93 comments (Add your own)

1. Stephanie wrote:

What did you use to get your symptoms under control? I was hospitalized in 2007 from an anaphylaxis reaction after consuming shell fish which I was never allergic to previously. After my initial hospitalization, my cycle kept coming on week after week. Every time my cycle would present, right before it would start approximately a week I would have severe cramping itching, difficulty breathing, hypertension, and on some occasions extreme tachycardia. I spent 52 days in the hospital total because they thought that I had idopathic angeiodema or anaphylaxis. However, I've notice and one of my doctors that it always occur right before my cycle. This disorder is almost debilitating as I have severe reactions at work and other inconvenient places. Please tell me what you are using, I am sick of this illness and want to get back to living a normal life. I've had several tests and discovered my allergy to soy however, I can have terrible reactions even though I was not exposed to an allergen. All seem to fall during my cycle. HELP>>

Mon, May 17, 2010 @ 8:59 PM

2. Lori wrote:

Hi Stephanie, so glad you found me! I did write back to you this morning with tons of info but while I was working on my blog entry, something went wrong and deleted everything! OOPS! This website is still very new and we're working on figuring out the best way to do the blog. I was able to recover your post and a good friend of mine is working on recovering my response back so please bear with me. If my post is not showing in the morning, I will rewrite it for you. So sorry for the delay!

Mon, May 17, 2010 @ 9:04 PM

3. Lori wrote:

Ok, I'm back Stephanie, :) I have articles published on hubpages.com with my entire story, how I got diagnosed, developed my own treatment, and how I used it to go into remission. Here is the link to part 4 of my series with details on my treatment using Pueraria Mirifica:

http://hubpages.com/_AIPA/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Part-4

You might have to copy and paste it from here but all of the links to my entire story and how high histamines can cause AIPA/ APD are on my "About Me" page and home page. The tab is located at the top of my website. My treatment is currently listed on Ebay and can be found/purchased on the link above (part 4). I will have a few products on this website but I'm making a some changes to containers/labels/pics and developing another treatment for those that might be sensitive to anything in the Pueraria Mirifica cream. I love the cream, great for your skin as well, but it's pretty expensive because of the organic ingredients from all over the world that I use to make it. The other product will just be organic carrier oils infused with the valuable estrogen (bioidentical estriol)constituents of Pueraria Mirifica. The oil infusion has the exact same amount of estrogen but is a bit stronger because it has no other skin conditioning ingredients in it to dilute the amount of estrogen going into the skin. And it won't be as expensive! I can actually offer this one now but just don't have it listed anywhere yet. I'd like to be able to offer a few different treatments so that others can choose which one is the most suitable for their needs.

You do have idiopathic angioedema/anaphylaxis according to the doctors, or at least they should have you diagnosed as such. It's called idiopathic because they can't figure out what's causing it. Definitely sounds like you have AIPA (Autoimmune Progesterone Anaphylaxis, Progesterone Induced Anaphylaxis) based on when your symptoms are occurring. You sound very similar to me and anaphylaxis will present itself differently in different people! I had excruciating burning muscle pain, seizures, low blood oxygen causing stroke like episodes, severe stomach pain causing vomiting of blood and bile, along with the symptoms you mentioned in your post. At least they kept you in the hospital for treatment. They couldn't even get the anaphylaxis diagnosed for me and sent me home on a heart monitor, inhalers, and pain killers. I was never treated for anaphylaxis with epinephrine or antihistamines. I had to survive on my own using research and natural treatments which is why I have devoted this website to informing/ helping others.

If your doctor is recognizing when the symptoms are occurring, then you need to see if he will research and test for this specific autoimmune disease/disorder. If not, then call Dermatologists, Allergists, Immunologists, and Ob/Gyn in your area and ask if they've ever heard of the condition and can test. Try, Try, Try to get tested and diagnosed. Take any info you can find to your doctor about this condition, case studies are a good one and some links are listed on my websites home page. You can even use my articles and "about me" pages if you like. Doctors do not know this condition exists and may even laugh in your face when you mention it to them, try not to let it bother you!

A lot of times testing will not even show positive and AIPA has to be diagnosed based on symptoms and when they are occurring so keep a specific journal of everything.

I have other emails/stories that I'm trying to get imported here on my blog but haven't had a chance yet. Hopefully soon, so you will be able to read about their experiences. Please feel free to contact me at any time about anything, I'm more than happy to help!!!

Tue, May 18, 2010 @ 7:40 AM

4. Holly wrote:

Hi Lori!

I don't think I got an e-mail from you, at least I can't find it in my inbox..? Hmm.. I'm new to the hub thing and I was kind of just googling idiopathic anaphylaxis and some how came across your information. I am really not sure even where to start- I am assuming you've been at this point.. :) . Lets see, I started having "allergic reactions, in which they said was anaphylaxis in 2000. I had them every single month up until 2004- I don't think I had any that year that I can remember. They could never figure out what it was that I was allergic to, I went through tons of tests.. allergic to latex, peanuts, asprin trees, grasses, some flowers, you name it I'm probably 'allergic to it'. January 2010 I had a reaction, I was actually at work- I work in an office and all of the sudden I got the weak feeling in my legs and started feeling the way I used to when I'd have a reaction, I left work and went to my mom's and sat for awhile.. my eyes were swollen like crazy, I could hardly breathe, I actually did like 10 puffs of my inhaler- no way did I want to go to the ER again. My mom gave me coffee and I took some benadryl (by the way I had rarely took any allergy medicine from 2004- Jan2010 because nothing really bothered me anymore. After a little while, I started feeling a litle better, breathing got better but I had a lot of crackling in my nose and throat. . I am kind of throwing my thoughts out as they come out... so bare with me! Anyway again, in February, I woke up at 5AM eyes swollen almost shut, couldn't breathe, I had a rash on my stomach and arms and the crackling nose and throat again. My nose was running and I couldn't even feel that it was running, it was stuffy- couldn't breathe out of it had to breathe out of my mouth.. I will attach a picture shortly. (We took it while I was in the ER) I was given a shot of adrenaline, put on an IV and given benadryl and then prednisone, I had to keep taking the prednisone for a week and a half eventually tappering the dose. In March, we were in Florida (I live in Iowa) on spring break. I was at Buffalo Wild Wings eating when I got this weird feeling in my stomach, maybe too much info but it is kind of like the feeling you get when you have to poop and are holding it. :) This is another "symptom" I have gotten every other time. We left a little later and then when we got home, eyes were BLOOD SHOT, i could hardly breathe, little swelling started in the face, and my nose was stuffy- where I couldn't breathe out of it, and again, it was running and I couldn't feel it. We went outside and sat and I used my inhaler like 6 or 7 times, -- No way was I going to the ER in Florida.. Sad huh? I hate going to the ER. I had to take 3 benadryl this time too. In April, I started getting the feeling twice, took 3 benadryl right when I started getting the feeling and I used my inhaler.. I had a hive on one of my eyes but it didn't get any further.. I was knocked out from the benadryl though. I went to the allergist in early March for the first time since the early 2000s and he did a lot of research.. I'm the first person he's treated with idiopathic anaphylaxis. He told me to do a little research, trying and keep track of my symptoms and see what I could come up with.

So I've been keeping track, looking back, I think I started getting my period in 2000, not 100% sure and my mom doesn't remember.
I have my period for a few days, then it goes away (in between each time when it goes away, that's when I have a reaction), then it comes back (period). In March I had a period while we were in florida (so around the 17th), in April I got one the first week (week ending the 11th) which was way,way, way early), and then the third week.. Which is really unusually for me. I actually was freaked out and took a pregnancy test because I've gained 20 lbs in one month, I think it may have been the prednisone, since the test was negative.. I'm just so confused about it. Sorry this e-mail is so sloppy, I'm really tired and my thoughts are scattered! Oh and normally, if my period is on the 17th, it starts on the 17th the next month or the 18th, it is all sorts of off now, which hasn't happened before. I know some have mentioned that they have anaphylaxis 10 or so days before their period starts so I'm really not sure if this is what it is or not. I have an appt with my allergist on May 23 so maybe I can talk to him about it.. He said he may send me to Chicago IL to see a specialist because he isn't very familiar with it.

Hope all is well with you,

Holly


PS: Thanks again for your time!

Tue, May 11, 2010 9:36 pm

Tue, May 18, 2010 @ 7:52 AM

5. Holly and Lori wrote:

-------- Original Message --------
Subject: RE: Progesterone allergy
From: Holly Tucker
Date: Fri, May 14, 2010 9:08 pm
To:

Hello again! I am slow at checking e-mail at home, been really busy at work.I think I am going to paste your message here- change my font color to answer your questions :) Or ask questions.. Might be easiest for me... Also, I forgot to attach pic last time, will do this time..

Lori: HI Holly, so happy to hear back from you! Been anxiously waiting! Well, I don't know where to really begin, there's lots to explain. First of all, are you on any kind of hormonal birth control???

Holly: No, I am not on any birth control.. (Also, I'm 23, 24 in September- not sure if that had been mentioned before)

Lori: I completely understand. We did withdrawal for 3 yrs and then well, you know, our 4th baby. I was always very, very careful about any of my sexual partners. You just never know what you could get nowadays. No birth control and latex allergy doesn't leave us many options at all.

Lori: Not to pry, but it would really help me put some pieces together. Birth control contains Progesterone and could possibly cause a reaction at any time, especially Depo Provera. That's what was used to test me for diagnosis. Most symptoms for AIPA should occur anywhere from 3-10 days before your period and then begin to subside after you start your period.

Holly: You can ask anything you want.. I think it'll help and I'll be an open book!

Lori: Great that your willing to put your personal info out there. It certainly makes it easier to figure out the problem which I have a pretty good idea of but it's very, very complicated, difficult to treat, and will take some experimenting on your part. Prescription drugs are going to end up doing to you what they've done to me and anything that I will recommend will be all natural, my only way of finding relief.


Holly: Do you know anything about a serum tryptase test? I have a note to the ER to check my levels next time I am there.

Lori: Yes, tryptase is released during anaphylaxis/ anaphylactoid reactions, BUT may not show up in testing even during anaphylactic episodes. It's to get positive testing for anaphylaxis. I have that same note but haven't had to go to ER for quite some time.

Lori: Here's the tricky part. It can take up to 3 weeks for histamine levels (what causes your reactions) to drop back down all the way where you stop reacting completely. If your levels are still fairly high because they haven't had time to drop all the way and your progesterone starts to rise again (which would be less than 3 weeks), your histamine level could cause you to teeter into anaphylaxis at anytime.


Holly: Which makes sense, it doesn't seem like it goes down, but I really don't know how to tell..

Lori: You just don't ever feel good. The higher your levels, the worse you feel (brain function, energy, breathing distress, etc.), the lower the levels, the more normal you feel, kind of healthy feeling. I still do not know what it's like to feel normal and healthy but where I'm at now is such a tremendous relief so I don't really notice the other minor irritating things.


Lori: That's what was happening to me for quite some time, I was constantly reacting in some way but it was showing as severe fatigue

Holly: all of the time, no matter what, however a few days this week I felt great,

Lori: OK, are you about 2-3 weeks away from your period??? I have a week a month like that and it's fabulous, my week is usually about a week after my period and I can work my tail off for days, feel great, lots of energy, great brain function, lots of motivation. Still pondering on how to try and have that all the time and seems to correlate with my hormone levels.

Lori: stomach pain?

Holly: I've gotten this a lot, which is usually the first sign that I am going to have a reaction that includes the swelling and anaphylaxis however, when i feel it coming on I take extra benadryl and it seems like it helps a little bit.

Lori: Yes, that's one of my symptoms I still have (very minor now), I still have issues a few days a month but no full blown anaphylaxis and it has to do more with my hormone, histamine flucuation, I have been in ER vomiting blood and bile begging to be shot from excruciating pain, literally wished I would die and was just mortified

Lori: burning muscle pain?

Holly: I don't really know what that feels like.. Honestly, I always feel like blah, or crappy so I don't know what "normal" feels like

Lori: I know this feeling very well, Probably feels like your not even real and your just looking at the world but your not really a part of it (very strange feeling) really disconnected. I used to have constant muscle burning (muscle tightness and clenching, especially my jaw) usually starting in my neck and shoulder that migrated to everywhere, was horrible and the only relief I could get was to drink alcohol (really terrible, I know). I was literally drove to drink on occasion to get some relief. At that time I was unaware that alcohol is an antihistamine. I was self medicating instinctively and didn't even know that I was doing it. Yes, alcohol (acetylaldehyde) naturally lowers your histamine levels and makes you feel sooooo much better, temporarily, then I'd have blasted hangover for about 3 days with very scary symptoms. I had to really be careful of not becoming an alcoholic because of the constant pain, suffering, and overwhelming draw to alcohol.,

Lori: but no hives or swelling most of time. If your periods have been irregular it will be difficult to figure out your 3-10 days before your period.

Holly: Which the have all of the sudden, they use to be like clockwork... which frustrates the heck out of me now..

Lori: ok so, if your allergic to progesterone, your body may be trying to compensate by not producing as much, causing irregularity, as a form of protection. It's down regulating your hormone production because of your reactions, possibly, if you are allergic to progesterone. This would throw your periods off, this is speculation on my part assuming you are allergic to progesterone,


Holly: I think I'll keep a journel every day now, how i feel throughout the day, what i eat, etc.

Lori: Definitely!!! Very Important to know EVERYTHING you are sensitive too and sensitivities may not show up in allergy testing.

Lori: You may have months or years of no anaphylactic reactions depending on what other things you are or aren't exposed to so your years of reaction does not surprise me. This is a horrible year for various allergies and I'm even having my difficulties with certain things that are in the air.

Holly: I thought I had outgrown my allergies

Lori: No, definitely not, they've more than likely gotten worse with you reacting to more allergens causing autoimmunity,

Holly: this year has been really tough.. I am sneezing every day, eyes itch constantly, watery, stuffy nose, I get a hive almost every day (for the last few weeks) on my right eye. I have a few other pictures I can include for you.

Lori: This year has been really rough for anyone with allergies, my son has had a horrible time with facial swelling, stomach pain, fatigue, insomnia, night terrors, inability to focus, I have been having a rough time as well, with itchy eyes, dry itchy throat, sinus drainage, etc. not much I can do about whatever is in the air except avoid everything else that I know I'm sensitive too

Lori: Another idea I have, which is a condition that the medical profession fails to recognize, is called histadelia It is where one is born with naturally high histamine levels and because this level is already high, it could start recognizing your own normal bodily fluids as foreign, along with many other things causing reactions. I have this condition based on my own theories but have never been diagnosed as the cause of my Progesterone Induced Anaphylaxis. Because of my constant high histamine, my immune system recognizes my own sweat, tears, and Progesterone as foreign, but it could recognize anything inside or outside your body!!!

Holly: I'll try and do some more research about histadelia, I really haven't heard that word until now.

Lori: NO doctor will have even heard of this word, lol. It is a very real condition and is caused by another source called undermethylation (very complicated cycle and difficult to correct but it can be done). You can be born with (genetically inherited) or you can end up with it later in life depending on things you have been exposed to, diet, what's in the air, things we drink or put on our skin, etc. It is where methyl groups bind to various vitamins, minerals, amino acids and conversions take place triggering various responses within our bodies to function normally. It has a huge affect on our immune system and histamine level causing serious immune system issues and severe allergies/autoimmunity. Somehow, who knows how, your good DNA got turned off, and bad DNA was turned on. Due to your stomach issues, your probably also very deficient in many ways (vitamins, minerals, amino acids), also leading to more complications with your bodies methylation cycle. It's a very nasty vicious cycle and one that I am very familiar with.

HOlly: Must be why they call it Idiopathic for me.. makes sense, just sucks that they can't figure it out..

Lori: It could be any 1 thing like progesterone or a combination of things at the same time. If you are exposed to 1 thing that your sensitive to then you may not even realize your reacting, you add 2 or 3 things that your sensitive to and they all start compounding raising your histamine levels even more. This is what happens to me. I may be ok with just what's in the air BUT, if I eat a bunch of things with certain ingredients, then I take a bath and wash with soaps containing chemicals, smear a bunch of lotion that contains paraben (toxic estrogen used as a preservative) all over my legs, and there's something in the air, I won't feel to great, lol.

Lori: It would depend on an individual's genetic weaknesses, what runs in your family history. IgE (histamine) attacking Thyroid

Holly: familiar with.. my dad had a low thyroid and my sister who is now 20 had half of her thyroid removed due to a mass growing on it.. not sure if means anything.. I am not at all medically inclined.. If that made sense!

Lori: Your fathers is a form of autoimmunity, your sisters could have been caused by undermethylation as well causing a mutation in cellular DNA, which could cause a goiter (growth on the thyroid). Have you had you thyroid levels checked? With your family history, your immune system could be attacking your thyroid causing problems as well,

Lori: IgE attacking lungs, muscles, joints, etc, causing any kind of autoimmune disorder, not just AIPA specifically. Histadelia is my ultimate underlying genetic condition that lead to me become allergic to so many things, including some of my own bodily fluids. This is what I certainly believe and I believe it exists in many. I have another hub on this that will explain my theories and why this is happening to us if you'd like to take a look. You might need to copy and paste it.

http://hubpages.com/hub/Explanation-of-Allergies-Best-Allergy-Relief-Natural-Antihistamines

Holly: I have it book marked so I can take a lot at it tomorrow afternoon

Lori: Depending on what your allergic/sensitive too and what you can avoid (obviously can't avoid whats in the air we breathe), your histamine levels may never drop completely to stop reactions completely. You may have absolutely no visible symptoms like hives and swelling but your reactions could be internal causing inner tension, teeth clenching, muscle/joint pain, ADD/ADHD, depression, anxiety, pins and needles in extremities, funny sensations in mouth, feeling like you have to poop , stomach disturbances (nausea, vomiting, spasms, cramping, etc.)

Holly: so weird, my jaw has been killing me lately

Lori: yep, that's it probably when you try to sleep, I'm guessing you don't sleep well, but want to sleep all the time. When you do sleep it's probably very intense and you clench your teeth!

Holly: I have anxiety a lot lately but most times are when I start feeling sick I get scared something is going to happen.. Or if I can't get a hold of Greg, I end up getting sick to my stomach worrying about it.

Lori: I know, I have PTSD, you have to TRY and stay calm, really talk to yourself, stress, anxiety, etc. also increases your histamine and will really send your brain firing in all directions, amongst other things like full blown anaphylaxis. I drink a tea called tension tamer, it works pretty well for stress and anxiety, doesn't make me drowsy

Holly: inability to focus seems normal to me now..

Lori: ADD/ADHD symptoms, I have this as well, some days better than others, REALLY frustrating

Holly: I never, never used to have acne which I have ALL OF THE TIME NOW..

Lori: You are seriously having hormone problems, really makes me think my treatment would help you

Holly: that's my first sign with the stomach pain- leads into D.

Lori: YES, it's horrible and then fear kicks in

Holly: stomach disturbances, that's a big one.. Actually, I have been to the ER twice because of really bad pains in my stomach- once they thought it was my appendix- which it ended up being nothing.. The ER drs were really mean to me both times, like I was making it up.. I was crying, kept feeling like I was going to vomit-- one of the drs asked me if I was pregnant I said no he said are you sure? how do you know?? DID YOU TAKE A TEST? I said no, I just know I am not pregnant- he tested me came back and said- well you're not pregnant.. thanks jerk.

Lori: I was tested for gall bladder, pancreas, and spleen (funny, I have 2 spleens), nothing showed in testing. I would pray they'd find something, not because I wanted to be sick but because I wanted to know what was wrong so I could get better. Most Doctors just have major ego problem and yes a majority of them are very mean. They think we're all idiots. They seriously tick me off!!! I had one tell me I needed mental help when my lungs were closing up, never even checked me, all I wanted was an albuterol inhaler, ended up having to go to ER anyway! Try very, very hard not to cry in front of them, because then they really treat you badly like your seriously crazy!

Lori: ALL kinds of symptoms that you would never even relate to having a constantly high histamine. Your more inclined to only pay attention to and attribute high histamine levels to your anaphylactic reactions only but you may be reacting all the time and not even know it. TRUST ME!!!! Yes, I'm in remission

Holly: I am very glad to hear!

Lori: I'm pretty sure we can figure something out for you but it will not be easy and you'll have to stick to a specific program. When you find something that works, do not stop taking it and think it will be ok. I learned the hard way, but sometimes we just can not afford everything I need. It sucks and I could probably cure myself completely but we have to be able to buy food.

Lori: I'm no longer suffering anaphylaxis from my progesterone but I am still reacting to things in the air, weather change, maple trees, foods/drinks, etc.

Holly: Which I believe is also a problem of mine, one day something may bother me another day something may not bother me. Actually, Greg's mom thinks I am faking. Which hurts because, I am not and I wouldn't do that to myself. She thinks I just want attention- said to Greg I just don't understand how one thing can bother someone and then the next day it doesnt.. Like burning leaves- sometimes makes my eyes blood shot and asthmatic, some days, it doesn't.

Lori: Probably depends on what kind of leaves are being burned. My son and I react to maple leaves, we can burn leaves but no maple leaves and that's what our whole neighborhood is, Fall is rough sometimes. Again, it will depend on what your exposed to and HOW many different exposures your having at that particular time. I HATE IT when people say things like that. Truly devastating and heart breaking!!! People like us don't want to feel like this or be sick, it's horrible, who would want to live like that. I seriously snap! I was pegged as a hypochondriac or psychosomatic (found that written in my medical records, jerks) for many years by doctors, family members, friends, even my own husband had his doubts about my sanity until he had to pick me up out of the driveway siezuring and they got positive diagnosis with tests and blood work that I demanded. He felt like a big horses butt then, lol. I do understand, I think he was in denial because he loves me number one and I hid a lot from him, I think deep down he knew I was dying and didn't want to accept it. I have to work very hard to bite my tongue and not complain, lol. He can see it in me when I don't feel well, now. But hopefully my really bad days will stay in the past.

Lori: My histamine level is still high and I'm always teetering depending on what I am exposed to. Progesterone was just the one that sent me spiraling in anaphylaxis. By building up my tolerance to Progesterone, I have lessened my allergy load quite a bit but still have allergies to other things that I currently can not control. I hope this is making sense, very hard for me to explain.

Holly: I understand that it is hard to explain... its hard for me to understand, let alone explain my situation.

Lori: Benadryl is a very good antihistamine and one that I used for many years until it started causing my seizures.

Holly: It was the first medicine I took- in 4th grade, gosh I don't even know how old I was..

Lori: Me too, the onset of puberty is when I really got sick and it progressed to anaphylaxis

Holly: After they found out i was allergic to dandelions (after picking them and smearing the flower on our faces at recess, yes we did weird stuff like that,

Lori: I remember doing that, lol.

Holly: My eyes were swollen and BLOOD SHOT, like crazy. They recently put me back on it- I hadn't taken it in probably 10 years.

Lori: If your taking it all the time you may build up a tolerance to it and it won't work anymore!

Holly: Which I believe I have and I don't think it is.

Lori: Yes, it knocks you out, lol, did me too, and you can't function on it,

Holly: It doesn't knock me out anymore. I took 3 the other night and felt like I was going to throw up.. that'll be the last time I do that... I passed out within 15 minutes of taking it. Greg was watching me though because I told him it felt like I did when I took vicodin (got run over by a car almost 2 years ago- no i'm not a drug addict ;)

Lori: I know, LOL. horrible stuff but it did work for me, I hate ER and did everything I could to avoid trips. Be very careful with your dose, it's easy to OD on and has caused death in children. Just a warning.

Holly: When I see the allergist, I am going to talk to him about it.. i don't think it is working GREATLY, i mean hey, I haven't had to go to the ER since Feb.. however, I am taking extra to make sure nothing happends at any of my 'warning' signs..

Lori: Same can happen with your inhaler, you may build up a tolerance to it as well!

Holly: I told him it doesn't work. I don't like the new inhalers, I don't think they work as well as the albuterol inhaler did.

Lori: I use albuterol but haven't had to in quite some time. Do you have epipens????

Holly: Yes, i've used an EPI PEN twice, well, my mom did it and then my nurse at school did it.. at school they had to put me on oxygen and start an IV in the nurses office then rush me to the hospital. I have two epi pens right now, and a demonstrator- which they never had before. I've carried at least one EPI pen with me since my reaction in 2000. You will never catch me without a purse, and a huge purse at that.. I am like a walking drug store.

Lori: LOL you should see my kitchen! It will buy you some time until you can find a better solution.

Holly: 15 minutes to get to the ER, if youre out longer than the 15 minutes you can use the other- that's what my allergist said.

Lori: The drugs are very bad, did more damage than good for me and made my treatment options very slim, but I do understand that you have no choice for now until you are certain what is causing your anaphylaxis.

Holly: The prednisone (which they said I may need to go on on an every day basis- right now i have infrequent IA so I don't have to yet) really seemed to help, it makes me feel like i have energy, the only thing I didn't like is how much I ate- which, you can tell I sure ate.

Lori: Predinisone is a nasty one. Yes, weight gain, big time! It's a steroid and will work for a while, again, with the tolerance thing. When you stop taking it you could end up worse. It's not correcting the problem just covering it up for a while like alcohol did for me.

Lori: I am the same with my allergies as you, you name it and I'm allergic to it, which is why I suspect the histadelia condition. You probably are allergic to your own progesterone as well, especially since you can't pinpoint what is causing the anaphylaxis. The test for progesterone does not always show positive and you have to have a very specific journal with dates of reactions in correlation to your periods.

Holly: I am going to start my journel tomorrow, day by day journel that is. I am having a hard time remembering things.. so hopefully it'll help

Lori: My memory sucks, I probably have brain damage now from lack of oxygen repeatedly and seizures, it will help. Then they can diagnose you based on your symptoms and when your symptoms occur if testing does not show positive. I was lucky and did show positive but not all cases do. You have got to find a doctor that is familiar with the progesterone allergy.

Holly: I am wondering if I have been tested for it. I know my doctor said I was tested for something but it came back negative..

Lori: they may have tested for celiac's disease, it's a gluten allergy, been tested many times. I guarantee you haven't been tested for the progesterone, probably IgE which is why they know about the anaphylaxis but not progesterone.

Lori: Most are not familiar with AIPA, so doctor shop, doctor shop, and see if your current doctor will research it and test you. Take him as much info as you can find, my hubs, case studies and treatments, etc.

Holly: I plan on giving him a link to your hub. I hope he will spend time looking into it.

Lori: He won't, but would be nice to think so.

Holly: I should get my medical records and send them to you! ha-ha

Lori: I'd be more than happy to take a look. I had to research all of mine. You wouldn't believe what they write in there and what they hide when it comes to testing. I found out so many things that they lied about. It was unbelievable! They can get away with anything!!!

Lori: If you are allergic to your progesterone, or any progesterone, stay away from all lotions, body washes, soaps, shampoos, conditioners, etc. that have Parabens

Holly: I'll have to google this word..

Lori: Parabens block your own bodies estrogen receptors and you need your good estrogen. This will help lower your histamine levels a bit. Try and avoid anything you know you are allergic too. I'm allergic to latex, aspirin, maple trees, most grasses as well. We have 4 children but I used spermacide suppositories which worked well for us to prevent pregnancy when we needed to, and I was not allergic to the spermacides. Probably would have had 10 children if I was, lol. My treatment for AIPA that I use with the Pueraria Mirifica (natural plant from Thailand that contains estriol a bioidentical estrogen that has put me in remission)

Holly: again, google here i come.

Lori: I write about it in part 4 of my series on hubpages. My treatment may put you in remission. It works just like allergy shots do but it is not a guarantee. I wish I could guarantee it but everyone is different, you would have to experiment like I did. I'd be me more than willing to help you along the way if you wanted to try it. Some of the cases of AIPA that I studied were successful on synthetic estrogen treatments but I could not use synthetic estrogen. Some cases were unfortunately unsuccessful. I experimented with the safest, most beneficial natural estrogen I could find and got very lucky. It works just like the successful synthetic estrogen cases I studied.

I have my own website up and running now, YAY! My treatment is not on there yet because I'm making some changes and have to take new pics but it's still on my hubpages (ebay listing). Hate to ask but I was wondering if I could post your comments/emails in the blog of my website?!

Holly: Yes, you sure can. .

Lori: GREAT Thank you so much!!! You can also contact me that way and participate in the blog to let others know your story, progress, and whether I've been helpful if you want. I would exclude certain details

Holly: anything you think would be beneficial to another person is fine, you don't have to exclude anything.

Lori: I certainly won't post anything if you don't want me to because of the personal nature of your situation.

I hope all this helps you and please feel free to ask me anything, email/blog anytime!!! Have a great day! Lori (She-rah)

Holly: I really don't know what else to ask. It is so hard to think about it sometimes.. (sneeze) my nose is stuffy today. Unfortunately, I have to work in the morning (do not normally work Saturdays but I am really behind at work) so I need to relax my mind so I can fall asleep.
Thank you again for your help--

Holly: PS: I smoke cigarettes and when I cut back or try to quit smoking, i start getting sick, eyes swelling, asthma, etc.. weird? No one believes me on that one either!

Lori: I certainly believe you, yes smoking is bad BUT it is an immunosuppressant and calms your immune system. When I quit, is when I started suffering from full blown anaphylaxis and it could be one of the things that ultimately kept me alive and from complete shock. Quitting is very stressful, WILL raise your histamine level, and could ultimately put you in shock causing death. I've experienced this so I know this for sure. Very hard for people to understand because of the health hazards associated with smoking but it's very true. I had to go back to smoking after 7 months, my body would just not calm down and I was repeatedly suffering life threatening symptoms. I still suffered the anaphylaxis after starting back up because Chantix (derived from a poisonous plant) caused extensive damage and quitting threw my immune system into complete overdrive.

I will follow in a bit with more info and possible treatments!

Tue, May 18, 2010 @ 9:10 AM

6. Lori wrote:

Good Morning Holly- Ok, so I think you suffer from a condition called undermethylation that causes high histamine levels (histadelia) and leads to various autoimmune responses. This is the short version and it is a very vicious cycle. My children and I suffer the same thing but can't always afford the supplements that I need to cure us completely, so I make sure I have the ones that are necessary. Here are some links to undermethylation:

http://chapmannd.com/histadelia

http://www.dramyyasko.com/nutrigenomic-testing-and-the-methylation-pathway/

Please understand that I am not a doctor, just someone who has done a tremendous amount of medical research and a lot of experimenting with various supplements to find the right treatments for myself. I truly do believe this is the ultimate source of your severe reactions and it will take a bit to find the right combo of treatments for you.

The first supplement I would like you to try is SAMe and it can be found on the internet or at your local pharmacy. It's over the counter, so no prescriptions needed. I like using vitacost.com for all of my supplements because they are super cheap but shipping takes about a week. Starting out with one or 2 supplements at a time is best because it's easier to see which ones are working and which ones are not. This is one supplement that is for all persons who are undermethylators that suffer from high histamine.

I would actually like to see if you could find a doctor to test you for the progesterone allergy before recommending my Pueraria Mirifica treatment simply because your timing of reactions is so hard to pinpoint based on your menstrual cycle. If SAMe is not going to help you, you will know it and become worse, so be prepared. Like I said before, this will take some experimenting but in people who are undermethylated and have high histamine, it should make you feel better. Not necessarily stop your anaphylaxis right away, could take up to 3 months to see significant improvement, and may take a few more supplements than just the SAMe but it's a good starting point for you. If you do not react badly to it, then stay on it and be consistent. I would start out with very, very small doses and work your way up to avoid any serious reactions.

PLEASE try and find a doctor to test for the progesterone allergy. Call all the dermatologists, Allergists, Immunologists in your area and just ask if they are familiar with the condition and if they can do the test with Depo Provera. If you test positive then, my treatment could possibly put you in remission like me.

SAMe is a more usable broken down form of methionine which is also for undermethylators/histadelics but I didn't do very well on the methionine, probably because of my liver damage, so I am going to try the SAMe as well. I may try it, see how I do, and also put my son on very small doses to see how he does. He is borderline autistic because of high histamine and undermethylation. Doctors do not know what either of these conditions are so they are of no help but I know that I have this condition and I think that you will be pretty sure you have it as well when you read the links above.

Another thing that you can try is Epsom salts baths, they are very cheap. Just get a bag of epsom salts pour a few cups in a hot bath, soak and sweat for about 20 minutes every other day. This will supplement you with some magnesium and is very safe. No worries about reactions on this one. I used it for my burning muscles and still do. Your probably going to need a high quality LIQUID vitamin/mineral/amino acid supplement as well. Actually, your just going to need this for sure. I use a vitamin called Eniva Vibe when I can afford it, it's a bit pricey but cheaper than buying 15 different supplements. This vitamin has it all!!! Makes me feel great but one of those that I can't have all the time because of cost. If you are undermethylated and having the stomach problems you have, you will be deficient in many different ways. Eniva Vibe covers just about all of them and it needs to be a liquid supplement so your body can absorb and be able to use it.The Eniva Vibe can be found on the internet, get the big bottle (apple flavored), that's the one I use. I think it might even be on Ebay. The SAMe, Eniva Vibe, and maybe estrogen, might be all you need to regain your health and stop your serious reactions. We'll just have to see.

I must warn you that this will be pretty expensive. I could probably have myself cured completely if it wasn't for how expensive supplements are. I am 100% positive this is the underlying source of our medical problems/severe allergies/autoimmunity it's just a real pain to try and fix. Please let me know if you get the SAMe, epsom salt,vitamin, and try them. And if you find a doctor to test you for the progesterone allergy, very important! I hope you're doing well today and I'm looking forward to hearing from you very soon! Lori

Tue, May 18, 2010 @ 9:25 AM

7. Lori wrote:

Actually wanted to let everyone know that if you are here because of various severe allergies, especially to things like your own hormones, you should take a look at the links on undermethylation/ histadelia in the post to Holly above. Really great info. Dr. Amy Yasko has a fabulous resume' and excellent information on undermethylation causing high histamine amongst the various other things that this cycle affects.

Wed, May 19, 2010 @ 7:32 AM

8. Vox Vocis (hubpages comment) 3/2010 wrote:

Quitting smoking (actually, smoking one cigaret a day) had positive effect on my health (I feel a little better). And some doctors calling me hypochondriac are so wrong!!! I still hope one day I´ll find out what my disease is and how I can treat it. Thanks for sharing your experience!

Thu, May 20, 2010 @ 8:13 AM

9. Lori (hubpages reply) 3/2010 wrote:

Your very welcome for sharing and thank you for the comments. I was a little worried about getting bashed about the whole smoking thing. Of course,I know it's bad, but for some one who's autoimmune, it's benefits could very well out weigh the risks. I'm actually considering trying the nicotine patch, again, so that I'm still suppressing my immune system but not killing myself with cigarettes. I despise the word "hypochondriac", literally had one doctor tell me I needed mental help while I was sitting in his office with my throat and lungs closing up. He never did check or treat me and I had to go to the emergency room. It is so rough dealing with doctors and others that treat you like that when you already feel so hopeless and I'm so sorry! Keep your chin up and do everything you can to get help and treatment. I'm positive that there is something that can be done for you. Research and Fight with the doctors tooth and nail!!!

Thu, May 20, 2010 @ 8:15 AM

10. Vox Vocis (hubpages reply) 3/2010 wrote:

Dear, I sympathize with you. I have this disease: chronical neurodermitis, urticaria - worst form, but it´s not actually a good diagnosis, no doctor in two states can explain what this really is or how it can be treated. My skin is often red, full of circles and lines and they burn, oh boy, do they burn :-( It is manifested every day so I have to take antihistamines on a daily basis.

Thu, May 20, 2010 @ 8:18 AM

11. Lori (hubpages reply) 3/2010 wrote:

Hi Vox, I'm so sorry to hear about your condition! Urticaria is horrible, I was breaking out from sweat. I certainly know what it's like to not be able to find the source of the problem. I researched and pushed doctors REALLY hard until they found some answers for me. My immunologist was my last hope before taking a trip to Cleveland Clinic for extensive testing on rare genetic disorders. Have you done your own research or made any connections with the cause? Is it some kind of allergy since urticaria is typically an autoimmune response? Really curious about your disease, as I've never heard of it.

Thu, May 20, 2010 @ 8:19 AM

12. Vox Vocis (hubpages reply) 3/2010 wrote:

I did all the possible tests to allergies - nothing, they say I don´t have an allergy. I noticed though, that when I have chronical urinary tract infections it burns very much ´´down there´´ and all over my skin (when I succeed to get rid of the infection at least for a month or two, urticaria is weakening), I have no gynaecological problems for the last three years but I think it must be some kind of bacteria causing this because my body is wild red when I eat sugar (bacteria feed themselves with sugar). My next step is to see a urologist to do all the tests I can there.

Thu, May 20, 2010 @ 8:33 AM

13. Lori (hubpages reply) 3/2010 wrote:

Hi Vox, I used to suffer repeated urinary tract and kidney infections along with others. Mine were caused by a systemic yeast infection called Chronic Candidiasis (Yeast syndrome), it feeds on sugar and carbohydrates, but most doctors refuse to recognize it as a medical condition. It took quite a few years to get diagnosed. Not sure if my autoimmunity allowed the infection or the infection caused the autoimmunity. Could be either. I found an internal medicine specialist that ran an Elisa Assay for a positive diagnosis. Along with verifying my symptoms. I was seeing gynecological specialists by the age of 14 and it wasn't diagnosed until I was 26. The doc put me on 2 weeks of Diflucan, no sugar/carb diet, and Probiotics. I still had the infection even after treatment so I control it by avoiding sugar for the most part, taking a Probiotic called Threelac, and eating organic coconut oil. Treatment of the infection usually causes a massive worsening of symptoms called a herxheimer reaction that last for a few days to weeks (it's horrible). The infection can cause urticaria, autoimmunity, frequent bladder/urinary tract infections, pain in muscles and joints, stomach and intestinal problems, tons of symptoms. It's another one that's very hard to diagnose because of all of the varied symptoms. Here's a really informative article:

http://www.cfs-recovery.org/docdarren2.html

I'd have to say that if you're having a big reaction to sugar then your condition is probably yeast related and your best bet would be to search high and low for a doc that will run tests for it. Just a guess. Hope this helps :)

Thu, May 20, 2010 @ 8:34 AM

14. Vox Vocis (imported email ) 5/2010 wrote:

"Vox Vocis (via HubPages)"
Date: Sat, May 01, 2010 11:03 am
To: hubs@awarenessforaipa.com

Dear She-rah,

I want to thank you once more for being so kind and trying to figure out the possible causes of my health problems. I finally found out that I have a massive allergy to milk proteins, gluten and nuts. Therefore, I am on a strict diet and visiting a doctor for alternative medicine who gave me a few injections and provided me with very good healing products. Hopefully, things will get better in time.

Thanks once again!

Best wishes,

Vox

Thu, May 20, 2010 @ 8:38 AM

15. Lori (imported email ) 5/2010 wrote:

5/2/2010 Lori (via HubPages)
Lori (hubs@awarenessforaipa.com) She-rah on HubPages
has sent you this message.

HI! Wow, such great news, made me cry!!! :) Now on to healing and getting better, I'm so happy they found the causes. I know your diet is really tough, I've had to do specific diets a few times and still have to be careful, very difficult but it will certainly help. Celiacs disease (the gluten allergy) is a really rough one. There's ton of hubs on HP about gluten free foods and diet. I've been tested for the gluten many, many times, I'm pretty familiar with it. Can't believe I never mentioned it to you, do you have digestive issues as well? I was focusing on the hives more but had I known whether you had stomach or intestinal problems, I probably would have said something about the gluten allergy and I thought you'd already had that test done, so sorry. I can't believe they hadn't tested you for that before with all the doctors and allergy testing you've had done in the past. Just blows my mind and makes me so angry that you've had to endure so much for so long. My immunologist recommends that my kids and I all take probiotics everyday. Our kind and your kind of allergies really mess up our digestion and the probiotics sure do help. Not sure if your doctor mentioned probiotics or not. Oh, I'm just so tickled with your news, what a tremendous relief for you to finally know what's wrong. Thank you so much for letting me know. Would you mind if I posted your comment on my hubs and my new website? Good luck to you with healing and finally putting an end to all your suffering. Have a great night! Lori

Thu, May 20, 2010 @ 8:43 AM

16. Vox Vocis (imported email ) 5/2010 wrote:

Vox Vocis
Date: Sun, May 02, 2010 3:40 am
To: Lori

Dear Lori,
I did the gluten allergy test two years ago but I had a crossed reaction showing I´m allergic to ´´everything´´ - this is a non-specific reaction. Recently, I did the test again (pseudo-allergy test) and it showed massive allergy to gluten and milk proteins. I have a very big stomach - people regularly ask me whether I´m pregnant (even the doctors asked me this question when I first came to visit) and intestinal problems. Unfortunately, probiotics are in milk products, which I can´t use anymore, but I might try with soya yogurt, gluten and lactosa free.

Let me know on which hub you would like to post my comment and I´ ll copy and paste it from my mail, but if you would like to do it yourself, it´s not a problem. Please, send a link to your website!

Best wishes,
Vox

Thu, May 20, 2010 @ 8:45 AM

17. Lori (imported email ) 5/2010 wrote:

RE: Your diagnosis
From: info@awarenessforaipa.com
Date: Sun, May 02, 2010 5:36 am
To: "Vox Vocis"

Good Morning Vox! I'm surprised they didn't run the gluten test again right after the first one with it showing the reaction it did. My son just had an IgE test showing allergic to everything and his levels are worse than mine, 380 and normal is 0-100. I've been freaking out, he's more autoimmune than me and missed school almost the entire month of March. I need to have the celiac's test done on him but he started going into shock and stopped breathing when they drew blood for the IgE. My poor baby! I feel so horrible but at least we can take precautions early on and pray he doesn't end up like me in a few years. The probiotics we take have no milk proteins and they work wonders on our digestion. Especially my son. He has terrible stomach problems when he eats certain things (all of us do but he's the worst). I get threelac off of ebay. I've tried many different kinds and this is by far the best one I've found. Yep, yogurt is out for you, I didn't know there was a soy yogurt. Hmm wonder what it's like, I'll have to look into that one. We love Chocolate soy milk, it's good and the kids don't mind drinking it. I'm hoping with avoidance of allergens that we can avoid, my kids will grow out of most of their allergies. I never want them to have to experience the things you and I have. I worry myself sick over it and what to do for them that I'm not already doing.

Thanks so much for letting me post your comment on HP and my website. There's actually 2 hubs I'd like to post it on and my website, lol. Part 4 hub of my series on AIPA, my "Explanation of Allergies" hub, and www.awarenessforaipa.com (my new website). I'll copy and paste your comment, I'm sure your busy enough without having to bother with that for me. If you wanted to do any hubs on your allergies/experiences, I'd be more than happy to put your links on my hubs and my website. :) Hope you have a great day and are starting to feel better. It could take up to 3 weeks for your histamine levels to drop from your new diet and most symptoms subside. Hopefully you're already starting to see a difference! Lori

Thu, May 20, 2010 @ 8:52 AM

18. Yvette (imported email ) wrote:

----- Original Message -----
From: Msyvet (via HubPages)
To: loricody1@comcast.net
Sent: Wed, 3 Mar 2010 21:23:24 +0000 (UTC)
Subject: AutoImmune Progesterone disorder
Msyvet on HubPages
has sent you this message.

She-rah:

I have had almost identical experiences with the hives and outbreaks on my body for 10 years and have been suffering with this for so long. I read your blog and am looking for help as to WHAT YOU DID once you found out you had this.

What sort of treatment has kept you from breaking out in hives as well as the anaphalaxis? I don't know who to turn to, it has become worse lately.

Any advice or direction on where I can go next would be helpful? Should I see a dermatologist or my gynecologist?

Thanks for sharing your story.

Thu, May 20, 2010 @ 9:09 AM

19. Lori (imported email ) wrote:

Date: Thu, 4 Mar 2010 02:16:41 +0000
From: loricody1@comcast.net
To: Msyvet
Subject: Re: AutoImmune Progesterone disorder


Hi Msyvet, so glad you found my articles! I hope I can help!!! As far as a Doctor goes, I would look for an Allergist/Immunologist to test for the condition, take them info. on the condition because it's extremely rare. They can shoot a small amount of Progesterone under your skin and wait to see if their is an allergic reaction. I do believe that some dermatologists and gynecologists might be aware of the condition also but it's very rare. Dermatology more than likely. Allergy/Immunology can also do a test for your own sweat which could also be the cause like in me. I'm severely allergic to my hormones and sweat. Although there is not much I can do about the sweat allergy, it's only bad when I'm reacting to my hormones, food, weather, hayfever, etc. at the same time. Depends on how high my histamines get. Hot bathes and showers also triggered hives but I switched to all organic/natural soaps, shampoos, conditioners, and lotions. I can not use anything that contains Parabens (a toxic estrogen), look at all of ingredients in anything that you use on your body to make sure that they don't contain Parabens. Since I have switched to all natural, I've only had about 2 hives on my belly after a bath in four months. Birth control, do not take any kind of birth control. I have never been able to take it do to severe reactions when I was younger. Birth control is also synthetic, toxic hormones and can cause serious complications in some women. Get off any birth control if you think you are allergic to your hormones!!! Honestly, my doctors have not really been able to help me except for getting me diagnosed and all they will do is experiment on me with injections or surgery. I have denied both and decided to do my own research and natural treatment. My treatment that I developed is homemade and can also be used to grow breasts (not that that's important but it was nice surprise for me!). Yes, I have grown breasts by making my body think it's pregnant/going thru puberty. Any woman that has hormonal problems, like menopause, perimenopause, imbalances, menstrual problems, conditions as severe as mine, or someone just wanting larger breasts can use this. I have made it all organic and natural and it is simply a cream that I infused with Pueraria Mirifica (a bio identical natural estrogen). I also, very slowly, worked my way up to 1000mg a day of oral doses after using the cream for about a month. I started extremely small, like 25mg per day to slowly build up a resistance in my immune system to stop reaction to my hormones, exactly like what allergy shots do. The Pueraria Mirifica is extremely safe, has many health benefits, and also helps prevent female related cancers (which I have suffered from also). It can not be used if you currently have a female related cancer though, so make sure you don't before you try and use this. So far I am still in remission and it is working very well. I have very minor problems with my stomach compared to the life threatening reactions and that's all I currently am having problems with 2 days a month. If you look into the pueraria mirifica on your own, you will find that's it's sold for breast enhancement and there are many creams/pills that are super expensive. I don't trust manufacturing companies, or most doctors for that matter. I couldn't find a product that contained the bio identical estrogen from Pueraria Mirifica only. They all had other estrogens and I only wanted a bio identical, safe estrogen. I started using the cream on the first day of my period and use it everyday, morning and night. The second month, on the first day of my period, I started with extremely low oral doses and worked my way up to 1000mg thru the rest of the month. Now, I just apply the cream 2x per day morning, night and take 500mg in the morning with food and 500mg at night with food. Each month I started increasing on the first day of my period with cream and oral doses until I was at the maximum recommended dose. I hope this helps you and I'm so sorry for the torment that your condition causes. I know it's horrible! Please feel free to contact me with any questions or for further information, I'll do anything I can to help! Lori

PS. Keep track of all of your symptoms and when they occur during the month, when you start your period, foods you eat, anything that could be a clue in getting proper diagnosis. Look for patterns, my anaphylaxis and skin reactions always began exactly 10 days before my period and started to subside 2 days after I started my period. It's a sure sign of a hormone allergy.

Thu, May 20, 2010 @ 9:22 AM

20. Msyvet (comment from hubpages ) 3/2010 wrote:

I just have to say once again, the more I read on these pages the more comfort I feel. Thank you again and again. I will be pushing my doctors hard for an answer...chances are, they may not want to give me one if they don't understand it and it isn't in the medical books. But that won't stop me.Keep writing She-ra!

Thu, May 20, 2010 @ 9:25 AM

21. Lori (comment from hubpages ) 3/2010 wrote:

Will do Mysyvet! Thanks agian for your wonderful comments! YES, YES, keep fighting and doctor shopping until you get diagnosed. Don't let them treat you badly and get you down, it is such a rare condition. It's very difficult, I know, it was the hardest part for me. Go to the doctors fully armed with everything you can find on Autoimmune Progesterone Dermatitis/ Anaphylasis and make them listen to you! Talk to you very soon! :)

Thu, May 20, 2010 @ 9:26 AM

22. Msyvet (comment from hubpages ) 3/2010 wrote:

Thank you so much for all of the information that you have given to me. I feel as though I can finally get a hold of this uticaria and begin to explore my options. Reading your hub helped me feel as though I have not been alone and that I won't be in the future. You rock She-ra!

Thu, May 20, 2010 @ 9:28 AM

23. Lori (comment from hubpages ) 3/2010 wrote:

AHHHH,Msyvet, Thank You So Much! Working on instructions for you for the cream. I wish you so much luck with the doctors and diagnosis. I will send an email in a bit! :)

Thu, May 20, 2010 @ 9:29 AM

24. Msyvet (imported email ) wrote:

----- Original Message -----
From: Msyvet
To: loricody1@comcast.net
Sent: Thu, 4 Mar 2010 03:33:48 +0000 (UTC)
Subject: RE: AutoImmune Progesterone disorder


Oh my gosh Lori....I feel like I am finally being understood. It has felt like I was living in a world of my own and that mine was all psychological. It didn't help that I am also a therapist/counselor and I have evaluated and re-evaluated my life over and over and over until I am DONE....I knew it was something physical and when I narrowed it down to the days near my cycle...it was as if I had taken a fresh breath of air reading other women's stories....especially yours today. I wanted to sit and cry at work because I felt relieved that I was not the only one with this syndrome.

I cannot thank you enough. I have noticed that parabens also affect me, sulfates...sulfites, etc. Just reading what you wrote to me tonight gives me hope. I also noticed that when I eat certain foods, particularly anything that will trigger my hormone imbalance, such as heavy carbohydrates or meats that have been treated with hormones, will make the hives worse.

The hives look like someone has taken their nails and dragged them across my body. The hives will only last for about 10 minutes or so, but I can see remnants of them and they ITCH like crazy.

I also noticed that hair coloring affected me as well...so I had to switch to an all natural product that doesn't have parabens, peroxide OR amonia...

I will begin researching which dermatologist to see. I work in a health clinic with doctors and NONE OF them have heard of what I am experiencing and some joked it was in my head...that just ticked me off...because me of all people have had enough therapy for different reasons to know that I do not need a reason to be crazy, and I don't desire attention..

I won't go into much detail, but I have searched and searched for an answer to my hives and breakouts at EXACTLY the same time you are indicating that yousr occur...then around 2 to 3 days AFTER my period, I am okay. It honestly looks like I have been whipped with a rope or something. AT first I thought it was paranormal, then realized it coincided with my period.

Please keep me posted as to WHEN you will begin selling this cream....I really would like to try it and I believe in alternative medicines...

I just appreciate your willingness to share your story, your struggle and your hope to get better naturally.

Bless you for that.

Take Care and I look forward to hearing from you soon.

Yvette

Thu, May 20, 2010 @ 9:35 AM

25. Lori (imported email ) wrote:

Date: Fri, 5 Mar 2010 15:37:29 +0000
From: loricody1@comcast.net
To: rooneytoons4u@msn.com
Subject: RE: AutoImmune Progesterone disorder


Good Morning Yvette! Wow, our symptoms were almost identical up until 3 yrs ago when Chantix really through me for a loop. I'm sure it's very difficult working in the medical industry and seeing all of the ignorance and misunderstanding that surrounds you. It was horrible for me and I didn't even work with doctors. I think that's probably been the worst part, the lack of knowledge from doctors, constant blaming of psychological problems, etc. I am so angry!!! Another reason I decided to try and treat it myself. I have no faith in doctors but I do need them to run the tests for me. Just tell me what's wrong and I will fix it on my own. Been doing it for yrs.
Do you remember if a majority of your symptoms went away during your pregnancies? That's what happened to me at about 4 months which is why I thought the estrogen might work. That and doctors have treated other women with estrogen. Not the safe kind of estrogen though. And, do you react to sugar like you do carbs??? That makes me wonder if you might have an underlying infection called Chronic Candidiasis, another one of those that doctors refuse to recognize. I've had it since the age of 14 and not sure if being autoimmune caused the infection or if the infection caused the autoimmunity. It's a nasty, really nasty infection. It's the common yeast infection but it becomes pathogenic and affects other parts of your body causing a whole mess of symptoms. I take coconut oil and avoid sugar to keep it under control. My infection became resistant to almost all treatments when I was in my early 20's. Here's a good article on it: http://www.cfs-recovery.org/docdarren2.html

You might have to copy and paste it but it's very informative. It took me 10yrs to find a doctor to do testing and find this.
You can go to your regular doctor and get a simple histamine test for the Progesterone allergy while your in the process of finding a Dermatologist. The candida test is a whole other battle with doctors.
Immunoglobin is the histamine test and that's why they sent me to immunology. Then you can get referred to someone by your doctor. Getting referrals isn't easy either when they can't find anything wrong with you. You have to have the histamine test done when your symptomatic, a few days before your period and do not take any antihistmines before. I had mine done when I wasn't showing symptoms and was still out of range but I just got lucky that the test picked it up. It's unknown what my levels are during anaphylaxis. I hate needles, lol!

I react to anything with sulf... also like tomatoes but eggs don't seem to bother me. Sugar/carbs cause reaction due to the candida infection and a lot of foods/drinks. I can not touch anything with caffeine, hate it, miss coffee so bad. I'd definitely try and stay away from caffeine too. Stevia is the only SAFE sweetner, nothing diet because they are all toxic including Splenda and can cause further unusual reactions. I have to avoid so much food and drinks that I'm a terrible binge eater because I've had to do without solid food for up to 11 days before. I'm a bit underweight and I eat when I can. Boy do I eat!!! I am up 12 lbs but have been as low as 88lbs. and had the doctors accusing me of anorexia and bulimia along with being a hypochondriac or psychosomatic. Really hard not to cry in the doctors office when you know your dying and they tell you that you need mental help.

I'll send you specific instructions cream because it's very important that you follow them. I must warn you that this is what has worked for me so far and may not work for you so be prepared to seek medical attention if you have problems with it. I'm not a doctor, just someone that found a cure for myself but the possibility of you reacting could be caused by anything in the cream, especially the estrogen. It's all natural but so are carbs, if you know what I mean. If you went into remission during pregnancy then I'm pretty sure it will work for you! You'd probably just get hives from it if anything at all happens but I can make no guarantees. Again, this is what works for me but everyone is different with different genetics. I'm sure you understand.

You have no idea what it means to me to be able to bring a little ease to your mind. I cried when I read your email yesterday too, lol. Even if the estrogen doesn't work for you, at least you can work on getting a medical diagnosis/ treatment and know that your not crazy. I'm very aware of the happiness and relief of finding someone like yourself and getting a diagnosis.

I have some links on my hubpages that should take you to some pretty good sites with info on the Progesterone condition and I will look for more for you if you like. Not a lot of info in this but some. Remember to take this to your doctor and make him listen to you or switch doctors!

I know that there are many more women with AIPA and some have probably died from anaphylaxis without ever being diagnosed, doctors just treated them like they were crazy. Breaks my heart and people need to be aware that the condition exists and can be life threatening. There's no way I'm only the 10th person that has suffered from the anaphylaxis. At least we can say we're unique, right?!
I'll let you know when the cream is finished. Do let me know how you are doing and write me any time even if it's just for support. Lori

Thu, May 20, 2010 @ 9:48 AM

26. Msyvet (imported email ) wrote:

----- Original Message -----
From: Msyvet
To: loricody1@comcast.net
Sent: Wed, 10 Mar 2010 02:41:13 +0000 (UTC)
Subject: RE: AutoImmune Progesterone disorder

Hi Lori:

Thank you so much for all of the things that you included in your last e-mail. For starters, YES, the hives went away when I was pregnant, although they got bad for a bit at the beginning of the pregnancy.

YES they get worse with certain carbs and sugars....but MOSTLY like today and tonight after I ate a snack of whole wheat toast and they just flared out of control. The spot in which I get the hives get warm, almost hot. Like a flush feeling. The look of the hives start off looking like someone has taken their nails and scraped them across my arms, legs, chest.etc. then little bumps appear next to those.

I have been researching the Candidasis and may fall into that category. However, this ONLY occurs when I am nearing my period, approximately 7 to 10 days out and then it eases up when I get my period and then like today, when I believe I may be ovulating. It is horrific. I feel like some sort of freak in a freak show when the hives come out. My grandmother on my father's side had VERY sensitive skin and could not wear a lot of things, I wonder how much of that is also hereditary.

I am so tired of this Lori, honestly....for ten years I just have felt like I need to live with it...but I am tired.It just gets so old when I have to scratch so much and it is debilitating.

Okay, will you send me your link to the hub pages again, I don't have it. I will gladly let people know how much your articles have helped me.Of course!!

By the way, does your head itch sometimes as well??? I am not lethargic or droopy, just itchy around those times of the month. I believe stress does exacerbate it as well. how about with you?

Who would test me for the progesterone? My dermatologist or my primary care physician?

As for no guarantees with your concoction, I get it. NO worries, I am not expecting miracles...but to at least try it may help.

Please tell me more about the coconut oil which I just read up on as well. I would like to start taking that.

Does that affect your Candidasis?

again, please send me your link.

Take Care and thank you again so much

Yvette

Thu, May 20, 2010 @ 9:52 AM

27. Lori (imported email ) wrote:

Date: Wed, 10 Mar 2010 16:26:28 +0000
From: loricody1@comcast.net
To: Msyvet
Subject: RE: AutoImmune Progesterone disorder

Good Morning! So happy to hear from you! Your very welcome for all of the info, I sure wish someone had known all this stuff to tell me, would've given years of my life back. Thank goodness the hives went away when you were pregnant. That was my biggest worry. Now I think for sure that the estrogen will work because your body does build up tolerance to your hormones. The first time I tried the estrogen, I screwed myself up and had to stop. I wasn't even able to get myself worked up to oral doses because I messed up from the get go. I got too anxious and didn't wait to start applying the cream to my skin on the first day of my period. Very important and I found out the hard way. I did well for the first 3 months, skipped two periods, and then all heck broke loose from messing my cycle up. This time I waited 6 months, started the cream on the first day of my period and have been able to increase my dosage from there. No messed up cycle and still in remission to date, going on 5 months now.

A little explanation for the food reactions. You may not react to certain foods all of the time depending on what your hormones and histamines are doing. Other times could be severe. This is because even if you build up a resistance to your hormones and get rid of those disabling reactions, your histamines will still rise before your period when progesterone is highest. You body may be able to handle the progesterone once you've built up resistance but if you add foods, drinks, things in the air, chemicals, etc. that you are sensitive too (not even highly allergic too) you are causing your body to get closer and closer to reaction. Hard to explain. You will always have higher histamines before your period even with resistance built up like in me, but if you keep adding things to your body that you are even slightly sensitive too, they begin compounding and overloading the body. For instance, I have currently built up a resistance to my hormones and am currently getting ready to start my period BUT the weather is changing, mold is in the air, I'm craving and eating food that I should avoid right now, I have had exposure to harsh chemicals from work on my skin, maple trees are budding, etc. and all of those things combined with my progesterone increasing right now have caused me to have some facial swelling and sinus problems this week. Next week, after my period, I can have exposure to all of those other things in the absence of progesterone and not react at all. In the winter when I'm not exposed to those other sensitivities, I won't react. Actually that's my easiest season, lol. You will always for the rest of your life have a sensitivity to progesterone, but you can use the estrogen to lessen the reaction to almost nothing. You go adding a bunch of other stuff that your sensitive to, before your period, and you'll kick yourself into reaction. Some things you will be able to avoid and others not, like hayfever. I have to avoid certain foods and even laundry detergents before my period and can avoid serious reaction from progesterone completely. Before the estrogen treatments, I would vomit blood and bile, my lungs would close up, I'd have seizures, etc. before my period and it lasted for days without even eating from the anaphylaxis. Like I said, remission, but probably not cured. Hope this makes sense.

The yeast thing- You will be sensitive to anything with yeast, sugar, carbs, if you have the Candida problem. Bread, beer, etc. again adding to the histamine overload. You may not react at all to anything with yeast, sugar, carbs, any other time of the month but before your period is when your immune system is going haywire and your body can't handle the overload.
Lists, time frames, and more lists is about all you can do to try and avoid these sensitivities. I cheat a lot, lol, and am still able to avoid full blown anaphylaxis. I just don't feel very good some days and I know it's my fault for binging on half a dozen cookies for breakfast 3 days before my period.

Coconut oil does help a great deal and I am able to tolerate sweets now. I gag down 3 tablespoons a day and get it from vitacost.com. Nutiva is the brand I use. I also put it in muffins, cookies, and just cook with it all around but mostly for sweets. There are a couple of ways to test for Candida at home, not sure how reliable, but one for sure is. You can either hit the full 3 tblsps. a day right off the bat and if you get sick like the flu you have the infection. It's called a herxheimer reaction and it's horrible too. I ran fevers, had diarhea, stomach pain, chills, body pain and aches, severe fatigue, etc. Learned my lesson there also! It goes away after a while when you've killed off a ton of yeast but the easiest way is just to start out very, very small and increase your dosage gradually to avoid the "die off" reaction. When you kill or feed yeast, they release toxins that make you feel horrible for a while. Almost like an allergic reaction in some and the flu in others, depends on how bad the infection is. Sorry, but you might feel bad for a while if you overdo. When you've killed off a bunch of it, you won't react to breads, sweets, etc as severely. I still can't drink beer and it makes me very, very sick but I can tolerate breads and stuff.

Yes, I used to have scalp reactions like itching bumps and blisters, had my husband keep checking me for lice, would get it in my mouth on my lips also. Switching to natural and organic soaps, shampoos etc. has stopped that since I started the estrogen. My 13 yr old daughter AND my 2 sons react to strange things too. My daughter has the sweat allergy, already diagnosed, she also gets the scalp itching before her period and hives (started when she was 8), and my boys just have respiratory allergies. Autoimmunity can unfortunately be passed thru genetics but that doesn't mean that your children will have problems. I come from a long line of undiagnosed family history (especially female problems) and I was desperate for diagnosis because of my kids. They have similar problems as me, especially with frequent infections and allergies. Now we know what to look for and things to avoid.

As far as the doctors, Dermatology would be your best bet for the progesterone test but your family doctor should be able to do it, IF he knows what he's looking for. You'll probably have to beg or get a referral. The progesterone test is not guaranteed either, sometimes the condition has to be diagnosed on symptoms alone. My test did show positive but was more of a delayed reaction showing hours later. The histamine test (blood) is one that either Dermatology or your family doc can do, try and get it done while your symptomatic. It will show if your histamines are high and whether your body is having unusual allergic/autoimmune reactions. Another test is the ANA test (blood) for autoimmunity like lupus. My ANA was elevated at 1:80 but not high enough for them to diagnose me with lupus. I got the stupid fibromyalgia diagnosis (which was wrong) with that test and rhuematology so it's pretty much worthless unless it's way out of range. Honestly, your going to have a battle on your hands with the doctors. You can call Dermatology offices and ask if the doctor is familiar with the condition, if he is then that's who you need to see. Your family doctor has probably never heard of it. You may want to talk to your OB/Gyn and see if they are familiar with it too. They should be able to test the progesterone since it's Depo Provera but not sure, they probably won't know what to look for as far as reaction.

Here's the links to my hubs -

http://hubpages.com/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Autoimmune-Progesterone-Anaphylaxis-Part-1

http://hubpages.com/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Autoimmune-Progesterone-Anaphylaxis-Part-2

http://hubpages.com/hub/Im-Allergic-to-My-Hormones-Awarenss-for-Progesterone-Induced-Anaphylaxis-Autoimmune-Progesterone-Anaphylaxis-Part-3

http://hubpages.com/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Part-4

Oh, almost forgot in all of my rambling babble, I did get the cream done but I obviously haven't been able to get my part 4 on hubpages, ebay, or amazon taken care of yet. I'm back to work and it's been taking it's toll. The cream isn't labeled which I'm working on today. I'll only make it fresh based on orders because it is organic/all natural and I'm not sure of the shelf life. It's good for over a month, that I am sure of. I have just been making fresh to avoid any spoilage or contamination. I feel so bad that your waiting on me! I know you must be as anxious as I was. Have a great day! Lori

Thu, May 20, 2010 @ 10:03 AM

28. Msyvet (imported email ) wrote:

----- Original Message -----
From: Msyvet
To: loricody1@comcast.net
Sent: Wed, 10 Mar 2010 21:20:29 +0000 (UTC)
Subject: RE: AutoImmune Progesterone disorder


Hiya Lori.

GREAT information once again. THanks, I really like the detail you give me as it helps me so much and I am that type of person.

I will gladly take the cream on paypal, I have an account, so just let me know how much and then I will send you the money.

It all makes so much sense. I am going to research a dermatologist that may be able to help me. Why would lupus be a diagnosis?

Well, I am going to go to your web pages and click in there.

I look forward to hearing from you,

Take Care,

Msyvet

Thu, May 20, 2010 @ 10:05 AM

29. Msyvet (imported email ) wrote:

Original Message -----
From: Msyvet
To: loricody1@comcast.net
Sent: Fri, 19 Mar 2010 22:36:42 +0000 (UTC)
Subject: RE: AutoImmune Progesterone disorder

Hi Lori,
Thanks again Lori for everything...it just helps me to know that I really AM NOT crazy!
Best to you!

Thu, May 20, 2010 @ 10:09 AM

30. Lori (imported email ) wrote:

Date: Sat, 27 Mar 2010 14:11:31 +0000
From: loricody1@comcast.net
To: Msyvet
Subject: RE: AutoImmune Progesterone disorder

Your very welcome and good morning, Yvette! You should get your cream today, let me know when you receive it. Instructions sent. This is exactly how I've been treating myself for the hormone allergy. I'm the first experiment using an all natural phytoestrogen so all I can do is advise on what I have done specifically to maintain remission. You will have to listen to your body and do your own experimenting as well.

If you start having problems while your on your period, like stomach upset, diarhea, by the 3rd month, then decrease the amount of applications to once a day or not at all, Only during your period! I would stick to at least once a day during your period to keep your estrogen level up but it depends on what your body needs. When your period is over, start the application of 2 times per day again. Stop using or decrease to 1 application during your period only from then on and apply twice per day everyday between periods.

You have to build up a tolerance for the first few months. Once the amount of estrogen is stable and your tolerance is built up you may get too much estrogen during your period. You need the estrogen the most in between your periods to keep your tolerance to the highest levels of progesterone up. The highest levels of progesterone start to build about 10 days before your period and then significantly decreases very quickly during your period when you may possibly need less estrogen as well. This is something you will have to play with because I don't know what your body is doing every month.

I'm still playing with increase and decrease myself but I plan on getting off all of my oral doses shortly. I'm just getting too much now during my period and it's upsetting my stomach. Next month I'm only going to use the cream during my period and cream + oral doses everyday in between. I hope I'm making sense. You should be fine on the cream only because you don't react to your progesterone as severely. The worse the reaction the more estrogen for tolerance you need. Let me know if you think you need more estrogen. I have the capsules or I can infuse more estrogen into the cream for application only. It's a 25% infusion but I can make it stronger if necessary, it will make the cream thinner.

Expect hormonal adjustments for the first month or 2!

Hot flashes
Pimples if you're prone to acne
Very sore, lumpy breasts- it's breast growth and mine get very, very sore for about 10 days before my period
Increase in body heat to a normal level if you're always cold
Night sweats
Increased appetite
Menstrual changes

It will be like going thru puberty or being pregnant in the beginning. Don't worry, the symptoms will subside when your body has adjusted. Of course stop using it immediately if you develop any allergic reactions like itching, hives, swelling, difficulty breathing, etc. I've applied it to every area of my body to test for reactions, including my face and around my eyes, no reactions what so ever. A friend of mine is also using it for hormonal imbalance and she is doing well. Check the ingredients to make sure you're not allergic to anything in the cream before you start using it.

List of ingredients: Organic aloe vera, comfrey root, chamomile, passion flower, white willow bark, marshmallow root, extra virgin olive oil, jojoba oil, almond oil, emu oil, extra virgin coconut oil, shea butter, cocoa butter, vegetable glycerine, acai berry oil, vitamin E, honey suckle extract, oatmeal extract, vanilla extract.

I plan on making a couple of different kinds of cream and maybe cut down on the expense of the ingredients but I haven't made it that far, lol. I want good quality skin care ingredients also so I'll have to see what I can do. I did get my final article (part 4) finished this week if you want to take a look. Lots of info on the Pueraria Mirifica and it's uses. Here's the link (copy/paste):

http://hubpages.com/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Part-4

I finally got labels and have the cream on ebay too. I was a little disturbed at the price I have to charge because of all the organic ingredients (they're pretty expensive) so I'm going to see what I can do about that. It takes alot of time to make and uses alot of ingredients. I'm not exactly a manufacturing company. ;) Please, do let me know how you are doing on the cream! I hope you have a great day and don't hesitate to ask me any questions!!! Lori

Thu, May 20, 2010 @ 10:21 AM

31. Msyvet (imported email ) wrote:

----- Original Message -----
From: Msyvet
To: loricody1@comcast.net
Sent: Sat, 10 Apr 2010 14:49:29 +0000 (UTC)
Subject: RE: AutoImmune Progesterone disorder


Lori:

I want you to know that I JUST STARTED my period. Was a bit perplexed as to why I hadn't started...but it came full force last night.

I had hives a few days before again, which is typical. I will now start the process of putting the cream on as you explained.

This is why I hadn't written earlier, I should have started my cycle almost 12 days ago. Could this be the start of menopause?? YIkes.

Hope you are well. And once again, thanks

Msyvet

Thu, May 20, 2010 @ 10:23 AM

32. Lori (imported email ) wrote:

Date: Sun, 11 Apr 2010 13:14:05 +0000
From: loricody1@comcast.net
To: Msyvet
Subject: RE: AutoImmune Progesterone disorder


Good Morning Yvette, So Happy to hear from you! I was going to write you this weekend but you beat me to it, lol. Yep, sure does sound like it might be the start of menopause. The estrogen will take care of that in a few months. I'm a bit late for my period this month as well, only 3 days but usually by now I'm begging to start just to get it over with. I'm sure you know that feeling! I don't even feel like I'm going to start so it's seems it will be a breeze this month. Nice for a change. I was a bit late last month also but it didn't cause any problems for me. I know your busy, but I would love it if you could email in a few days and let me know how your doing on the cream or have any questions about things you may experience. Thanks so much for letting me know what's going on, truly appreciate it! I'm doing well, just getting over a nasty viral infection, but to be quite honest it was "nice" being legitimately sick. Sad but true. I got over it all by myself and didn't even have to go to the doctor. I was so excited! Seems my immune system is calming and starting to work better. Took me 6 months to get this far, but hey, whatever works!:) I'm sure not going to complain. Hope you have a great day and I look forward to hearing from you!!! Lori

Thu, May 20, 2010 @ 10:25 AM

33. Msyvet (imported email ) wrote:

----- Original Message -----
From: Msyvet
To: loricody1@comcast.net
Sent: Tue, 13 Apr 2010 01:33:38 +0000 (UTC)
Subject: RE: AutoImmune Progesterone disorder


Hi Lori:

Wanted to update you on how things are going. This is day three of my period and also of the cream. I started getting an upset stomach and some diarrhea. So, I am going to cut down to one time a day while on my period. I even noticed my period being shorter, but we will see. It usually lasts seven days and pretty heavy up until the 5th day. Today, it is almost gone...LOVE THAT!!

Anyway, wanted to keep you posted.

Thanks again,

Msyvet

Thu, May 20, 2010 @ 10:26 AM

34. Lori (imported email ) wrote:

Date: Tue, 13 Apr 2010 02:55:35 +0000
From: loricody1@comcast.net
To: Msyvet
Subject: RE: AutoImmune Progesterone disorder


HI, Thanks so much for the update. Yes, cut back to once a day while on your period or maybe even 1/2 the amount once a day. That's the only time I have problems with my stomach, too much estrogen during that time I think but I always have stomach problems a bit during my period. After your period try and build up to using more, slowly, REALLY SLOWLY, cut back again on your next period to once a day, and then resume at the amount you left off at before you cut back. You may not be able to use it at all during your period like I do. Wow, confusing myself, lol. Sorry it's upsetting your stomach and you'll have to do some experimenting, sounds like you'll have to build really, really slow, even compared to me. Your body may produce more estrogen than mine by itself but not enough to build a tolerance to the progesterone. At least you can see how strong the hormonal effects are and your pleased with a shorter period :)! It's pretty strong stuff so you may just be able to get by with using small amounts in between your periods only. Keep me updated and have a great night! Lori

Thu, May 20, 2010 @ 10:28 AM

35. Msyvet (imported email ) wrote:

----- Original Message -----
From: Msyvet
To: loricody1@comcast.net
Sent: Tue, 13 Apr 2010 04:41:14 +0000 (UTC)
Subject: RE: AutoImmune Progesterone disorder


Hi Lori:

At present, am doing well.

The stomach problems are not that bad, just uncomfortable. I am hardly using much to begin with, maybe 1/2 a teaspoon...so I will cut back. I was not in any hurry to try much, so I went with as little as possible, but will go even less.

Will keep you informed.

Take Care and Happy Dreams!

Yvette

Thu, May 20, 2010 @ 10:30 AM

36. Lori (imported email ) wrote:

Date: Tue, 13 Apr 2010 11:32:12 +0000
From: loricody1@comcast.net
To: Msyvet
Subject: RE: AutoImmune Progesterone disorder


Good Morning! Your uncomfortableness should stop after your period, you're body will adjust pretty quickly. Have a great day! Lori

Thu, May 20, 2010 @ 10:31 AM

37. Msyvet (imported email ) wrote:

----- Original Message -----
From: Msyvet
To: loricody1@comcast.net
Sent: Sat, 15 May 2010 15:45:45 +0000 (UTC)
Subject: RE: AutoImmune Progesterone disorder


Hi Lori:

I haven't writtenin some time. Dealing with a traumatic experience, I have been so out of it, but have managed to put the cream on daily.

UNBELIEVABLE is all I can say. I have almost NO HIVES at all. My period has shortened to maybe 3 to 4 days and it is NOT even heavy. I feel so different. I still have minor hives but it doesn't look or feel like I have been flogged andit doesn't itch.

I still have a bit of itching on my scalp near my ovulation as I am nearing that now.

How do I find you on E-bay so I can order more.

I cannot say enough for what this has done.



I have not even been consistent in putting it on twice a day and I was just trying to stay above water. So I look forward this next month when it will be even more consistent.

Thank you a million times for your effort in trying to find the right combination of oils. The doctor's I work with cannot believe it....I even showed them the hives when they were occurring. Now they believe it.

Anyway, it has also helped with my mood swings

Write when you can and let me know how you are as well.

Take Care and again, Thank you.

Yvette

Thu, May 20, 2010 @ 10:35 AM

38. Lori (imported email ) wrote:

From : loricody1@comcast.net
Subject : RE: AutoImmune Progesterone disorder
To : Msyvet
Mon, May 17, 2010 02:24 PM

HELLO!!!! So happy to hear from you! I wish you could have sent me all great news, I'M SOOOOO SORRY TO HEAR ABOUT ...! I'm sure you're just about at your wits end with everything you've had to endure lately. Wow, you certainly have an amazing amount of strength. You need a break, hang in there Yvette, I'm praying for you! You have been through so much and I wish there was more that I could do to help. Please let me know if there is anything!

I'm just ecstatic to hear that the cream is working for you too!!! I'm hoping that with a few more months of use, the few hives you are still getting will stay away completely. If not, I can increase the amount of estrogen in your cream or you can just apply it more frequently, but that's your call. Actually, since you haven't been able to use it consistently yet, completely understand that, then it may take care of the other few hives when you are able to maintain consistency. Has your body adjusted enough yet to start increasing slowly or are you still having issues with your stomach? I honestly think you should try to not use any at all during your period and use it all the time in between your periods if you can. During my period has been my only problem with my stomach a few days so that's my next step.

I'm trying to get to that point but I might have myself in a bit of trouble with the oral doses. I don't think I should have ever tried that but I had to make sure I had enough estrogen to maintain my tolerance. Now, I'm on too much and having difficulties getting myself weaned off of it. I tried to cut my dose in half and only take 500mg last month on the first day of my period and I ended up with cramps so bad I thought I was in labor for 3 days and going to give birth to a hippo. It was horrible. This month, I'm pretty late and haven't started yet. As long as I don't skip a whole month, I'll be fine. At least I can recommend not taking the oral doses and using the cream too, lol. I have to be the one to experiment with that part so I know what advice to give, especially in treating our progesterone allergy. I may have a rough few months ahead while trying to get off of the oral doses but I'll get myself working right again, no worries!

I'm doing well enough to work 3 jobs and still not be ill so that's nice. We're a bit stressed as well, but I'm maintaining health wise. I have never dealt with stress very well so I definitely see improvement in that area for me. I might put my husband on the cream to help with stress but he's afraid he'll grow an extra nipple, rofl! :)

That's so great that your moods are stabilizing! I have that as well, I just feel stronger/happy and not on constant edge between one emotion and the next. Depression is so much better but I'm not scared to death anymore so that certainly helps.

That's so funny about the doctors at your work. Maybe now, they'll listen to their patients more and do a little research into what their patients complaints are. Or at least not make them feel like they're crazy or need mental help! That was the worst!!!

Here is my ebay listing:

http://cgi.ebay.com/Pueraria-Mirifica-Cream-60g-100-Natural-and-Organic_W0QQitemZ270553466302QQcategoryZ67590QQcmdZViewItem

Or it can be found here: http://hubpages.com/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Part-4

My website is almost complete and has a blog for questions, comments, suggestions, updates, etc. I have tons to import on it and haven't had a chance yet, busy, busy but it will be complete when I get the cream and a few other products I've developed on there. Here' my new website: http://www.awarenessforaipa.com/

I've changed the container of the cream to glass, I hate plastic, and I will have new labels shortly to match my website. Would you mind if I posted your emails/comments on my blog, excluding certain details of course? Your my other AIPA success story to date and I would love for others to be able to read about your improvements to get help they need with various conditions. If you don't want me to put anything on there, I completely understand because it's so personal. Just let me know! You wouldn't believe the emails I get everyday from other women suffering the same kinds of things.

And You're Very Welcome, but I should be thanking you for reading my story, trusting me, and trying my treatment!!! So, More than a Million Thanks from me to you! I'm so thrilled and so happy it's helping you!

Well, I hope you have a great day and I'm always looking forward to hearing from you, write soon! Will keep you and your family in my prayers! Lori

Thu, May 20, 2010 @ 10:45 AM

39. Lori (imported email ) wrote:

From : loricody1@comcast.net
Subject : RE: AutoImmune Progesterone disorder
To : Msyvet
Mon, May 17, 2010 03:01 PM

Oh, Msyvet, so sorry, I forgot to mention about the scalp thing. I used to get really bad infected follicles, have crawling sensations, and itch beyond belief too. That has subsided now, but I used Equate 2 in 1 dandruff shampoo plus conditioner. I'm not fond of the ingredients but it has no parabens and did help me a great deal with the itching.

Wanted to drop you this link as well: http://www.topix.com/forum/health/breast-cancer/TJCGI9R6O8VUFJAAO/p4#lastPost

I know your very busy, so don't worry about it if you can't get to it, but thought you might find this entertaining. You'll know who I am on here (She-rah, of course, lol). Feel free to leave a quick comment and help me shut this woman up, if you'd like ;) Big hugs, Lori

Thu, May 20, 2010 @ 10:48 AM

40. Lori (imported email ) wrote:

From : loricody1@comcast.net
Subject : RE: AutoImmune Progesterone disorder
To : Msyvet

Mon, May 17, 2010 09:34 PM

AWWWW, you're so AWESOME! Thanks so much for posting on the topix forum. That woman has serious problems. I think she's menopausal and needs some of my cream, lol! :)

Thu, May 20, 2010 @ 10:50 AM

41. Lori (imported email ) wrote:

From : Msyvet
Subject : RE: AutoImmune Progesterone disorder
To : loricody1@comcast.net
Mon, May 17, 2010 10:51 PM

I hope it helped others to read what I wrote. Gail sounds really scary and quite harsh. In my opinion, hurt people usually hurt people. Does that make sense?
Just keep doing what you are doing. Like she has any right to call the FDA,they are more concerned about Whole Foods and Sprouts who are making millions....which they should.The FDA is NOT God.
Thanks for all of your help. I will be ordering more. I am not finding I have any problems with my tummy on my period when I am doing it once a day. Will keep you posted.
thanks for the words and encouragement. I can use prayer all the time. I appreciate it...and believe that it works.
Take Care and YES you can use my words in your blog or wherever else you need to. I trust you will be discreet. :)

Msyvet

Thu, May 20, 2010 @ 10:53 AM

42. Lori wrote:

Hi Stephanie! I tried to email you back at the address that was provided but it won't send. I've tried a couple different ways and still not working. I hope you find this post!!! Just let me know another method of contacting you or I could just post the email here.

Sun, May 23, 2010 @ 8:56 PM

43. Stephanie S wrote:

I am not sure if my other email to you worked on hub pages. I would like to know the name of your doctor or the one that actually diagnosed you? How did you get diagnosed? Also, I see you had kids...we are trying but I am convinced it isn't working because of my 'allergy' I am swelling up SEVERELY every month so I can't imagine how my body will ever let me get pregnant with all the drugs I am on and swellings that I get. Did you have problems conceiving? Thanks for your site. It is great that you are doing this! Thanks!

Wed, October 6, 2010 @ 11:34 AM

44. Holly wrote:

Lori- It has taken a while to get back to you, over a month. I have a few minutes so I just wanted to let you know I again (had a reaction) today June 20th.

Last mensies started May 31 anticipated date June 30- 10 days prior to.. I kind of just tried to let it all slip out of my mind for awhile until today when it happened again. This time we were driving over to G's parents house for lunch. I didn't have to go to the hospital, took 50 MG of benadryl on top of the 50 MG that I took last night before bed. I am taking another 50 here in a few minutes so its helping I suppose. Also, used inhaler this time. I didn't go to the allergist on the 25th of May-- Greg had a seizure from hypoglycemia and ended up in the hospital so I stayed with him. I am going to make another appointment and will let you know how that goes.

Will talk to you soon!

Wed, October 6, 2010 @ 11:36 AM

45. R. N. and Lori wrote:

Good morning Roxanne! It's strange that your libido would go down, so I would guess that the lack of hormones from the BC was playing a role in that when you first started using the cream. My libido went thru the roof when I started using the PM cream and I drive my husband crazy, lol. It was the first time I had ever been on any kind of hormone ever so I could feel the effects right away. Glad you stopped using the progesterone cream for now and your acne is starting to clear. Can be dangerous if your body doesn't ovulate when it needs to.
Sorry the link to the ebay listing didn't work! Emailing is much better for links, thanks for your email, this is much easier. :) Here is the link and seller again so you can check him out. Let me know if these work or not.



http://cgi.ebay.com/ws/eBayISAPI.dll?ViewItem&item=260624033930

pueraria-uk

The PM should accomplish everything that you want but because of the BC, the cream alone may not be as effective for you as it is for me. You can apply it more frequently to different areas of the body to get higher amounts of estrogen, including "down there", you can take the oral doses, or you can do both at the same time like I do. I even apply it "down there" at night since I've had 3 children and my libido was zilch for a few yrs., plus it was very difficult for me to have orgasms from lots of stitches, scar tissue, and nerve damage. Natural child birth did a number on me due to my very petite frame. Literally healed the scarring, nerve damage, and increased muscle tone. I've been able to have multiple orgasms for the first time in my life. Not trying to give you too much vivid detail but I do want to be honest. I like the cream because I can specify which areas of my body I want to get the most estrogen for growth and firming and it has an overall effect as well. I use it on my breasts, face, butt cheeks, and "down there". Those are the places that I wanted significant improvement and I can localize the effects of the PM along with treating my autoimmunity. Hey, I want all the benefits I can get, lol.

Your own bodies progesterone raising naturally due to the PM won't have too much of an effect, or at least only good effects like helping with PMS, acne and other things. You can use the progesterone cream if you like because the BC more than likely had progesterone in it and that's what your body is used to, but you don't have to.

Let me know how the fennel works for you because it's also good for stomach spasms and many other things that I have issues with. I haven't added any other phytoestrogens to my regiment because other phytoestrogens will attach to the estrogen receptors and block the PM from being able to attach making it less effective. PM is 3000 times stronger than other phytoestrogens and I need the full effect for my progesterone allergy but the fennel is of huge interest to me because of my gastroparesis (vagus nerve damage causing severe stomach and intestinal spasms). Just had a bout with it for the first time in a while when trying to wean myself off of the mega oral doses of PM I was taking. Not fun at all and I lost a bunch of weight, so frustrated!!! Wondering if the fennel might help with my stomach and still allow the PM to keep me in remission along with maintaining the other effects I have from it?! My stomach is soooo much better but I do still have problems with it on occasion during my period. I'd really like to have it completely under control.

Well, late for work better get outta here, lol, let's see how well I do at avoiding a heat stroke today. Not looking forward to going and busting my rear in the suffocating humidity. 105 heat index and I'm just not ready for it at all! Hope you have a great day and looking forward to hearing from you soon! Hugs, Lori

Wed, October 6, 2010 @ 11:43 AM

46. R. N. and Lori wrote:

hey there! had my birthday this weekend so things have been busy!

i will definitely let you know how the fennel affects me. UPS has been trying to deliver my vitamins, but i havent been home to get it -- i should tomorrow!

i have been using a PM cream the last week and i got some PM pills (unfortunately, i had ordered them before getting your seller id, so, i hope they are decent quality). thank you for that link, i am going to probably order through them when i get my ducks in a row.

once i get my period this month, i am going to start charting any symptoms, etc. so i can make sense of what is going on hormonally. my face continues to break out, but my sex drive has been a little better the last couple of days. i'm wondering if that's because my period is about to start (that usually happens right when i get my period). i am going to wait to send the saliva sample for the hormone testing kit i got until i have been using the pills and cream for at least one cycle. i shouldve been doing this charting for awhile now. the simplest things always seem to occur to me last!

we had a hot week here, too. where are you? i'm in massachusetts. the a.c. has been on nonstop for the last couple of days. thank god for that! i will keep in touch!!

all the best,

R.N.

Wed, October 6, 2010 @ 11:46 AM

47. R. N. and Lori wrote:

HELLO! Just checking up on you! How are you doing??? Have a great day! Lori

Wed, October 6, 2010 @ 11:46 AM

48. R. N. and Lori wrote:

hey there! well, i have been taking a break from everything hormonal so i can get myself to my "baseline" which i feel like i am at now. in the next week, i am going to do the hormonal testing kit and send that in to find out what my actual levels are. from there, i can make any necessary changes i may need to make. it will be very interesting to see where i may be lacking adequate hormonal levels or vice versa. i shall let you know what comes of that!

how is everything with you? have you been maintaining your positive benefits from the pm? any new revelations?

thanks for checking in :) hope all is well with you!

R.N.

Wed, October 6, 2010 @ 11:47 AM

49. R. N. and Lori wrote:

Hello! So happy to hear from you, Sounds like a great plan!!!! Can't wait too hear how the hormone tests come out for you. Are feeling really bad since you've taken a break from everything???

I'm doing well, busy summer with work, 8 trips to ER only 1 was for me from work injury the rest of the families turn this year I guess. I've been horrible about not getting back to everyone like I want too, been a bit busy :) Aside from all of that, I'm holding up surprisingly well. I do go in today to have my gall bladder checked which may be why I haven't been able to get rid of ALL my stomach problems even with the PM. May not all be from the hormone allergy. It's much better than what it was, no more vomiting, but now I'm having other problems that fit right in line with gall bladder disease which does run in my family. If they take my gall bladder out and all my stomach problems disappear, I might have to consider the PM a cure for the the allergy! I thought that my stomach was all related to just that one thing but seems that they're may be a little more than that in play. Just have to wait and see.

Please do let me know how your tests turn out and have a great day! Hugs, Lori

Wed, October 6, 2010 @ 11:49 AM

50. Stephanie and Lori wrote:

Hi Stephanie, not sure if you'll get this or not. I tried sending it to the yahoo email but it didn't go thru. Your welcome for my site, very happy to help others! So glad I got this email, not sure why I didn't get the one sent thru hubpages. I replied back to your comment on my article and also replied to your post on my website forum: http://www.awarenessforaipa.com/blog


The name of my doctor is Dr. David Wright at Central Illinois Allergy and Respiratory (AIR) in Springfield, IL. The office number is 217-522-5596 if you would like to call them. Pretty far away from you, but I certainly understand being desperate for a diagnosis and treatment. Dr. Wright is an Allergist, Immunologist, and Internal Med Specialist. Very brilliant but a huge pill pusher and I can not tolerate prescription drugs anymore. It took me 24yrs to get diagnosed and was suffering the anaphylaxis for 3yrs. Never was treated for it, I was so scared to death all the time! Most of the time, I didn't have swelling or hives when I was suffering, my reactions were mostly internal, so it was very difficult diagnose and I had to demand testing for histamine (IgE blood test). Dr. Wright can test and diagnose but Ob/Gyn would ultimately decide your treatment. I didn't have any safe options which is why I developed my own natural treatment, which is still working well for me.

They shot 2 injections of Depo Provera in my upper arm, right under the skin. One was diluted Depo Provera and the other was full strength. I never showed a big reaction, like a hive or swelling, had very small bumps with itching at the injection sites. Several hours later, I had very hard, large, and painful lumps develop under my skin where the Depo Provera was injected. They were called satellite lesions and showed a significant delayed reaction. Also showing that most of my reactions were internal a majority of the time. Most doctors think of anaphylaxis as an immediate reaction but my form builds slowly over a few days gradually increasing with severe life threatening symptoms.

Are you on Predinesone and Epinephrine??? You should have epinephrine at all times. I finally have epipens, but I haven't had to ever use them since diagnosis and treatment. My cream that I developed with the Pueraria Mirifica (PM) is what I have used to go into and maintain remission. I also started oral doses of the PM but I'm trying to get myself weaned off the oral doses. It's just too much estrogen and I've started building up a resistance. I'm going to only use the cream in between periods and then take a break while on my period to avoid the resistance issue. I have imported some emails on my forum as well. Msyvet also has the hormone allergy and is the 2nd successful case using my cream for remission but she wasn't suffering full blown anaphylaxis like you and I. She was breaking out every month with the miserable hives all over her entire body. She still has not been diagnosed or tested by doctors and she works with doctors. They actually made fun of her when she asked them about the hormone allergy, so she has decided that she does have the condition based on when her symptoms are occurring and she treats herself. Doctors really have no idea that AIPA even exists. Almost all cases, outside of me, are diagnosed as idiopathic anaphylaxis.

Are you having reactions between 3-10 days before your period when your progesterone is rising? That's a sure sign of the allergy. The reason I ask is because it is possible to also become allergic to your own estrogen with it's reactions occurring in a different time frame. I have not been tested for estrogen but I do not react to my estrogen treatment so I'm sure I am not allergic to it as well.

Yes, I have 3 children and conceiving was not a problem for me but could be for someone else. I was only breaking out in random hives once in a while when I conceived and not suffering the severe symptoms, like you, until 3 yrs. ago. I went into remission at about 3-4 months into my pregnancy from the increase in my hormones but almost lost my daughter at 4 months and my son at 7 months. All of them were born a month premature. I believe that if you become pregnant with a girl, your body reacts more severely because of the hormones the baby has and could potentially cause your immune system to attack and/or abort the baby. This is just theory on my part and based on my experiences. You may have difficulties becoming pregnant because your body might not produce enough progesterone due to being allergic to it. It could be your bodies way of protecting itself. The meds you are on could also be a serious problem especially if you do become pregnant while on the meds. You would have to talk to an Ob/Gyn about this. The cream that I use may work for you to avoid anaphylaxis as well, but I'm not sure you could use it during pregnancy. You might go into remission during pregnancy and if you have your tolerance built up you might be able to go off the cream during pregnancy and stay in remission using your own hormones. Getting pregnant and staying pregnant might be a bit tricky for you.

I'd like you to get tested and diagnosed but that may be impossible and you'll just have to take things into your own hands, like I had to do. If you decide to try my treatment, I must warn you that you could have a reaction. Be prepared to seek medical attention. Myself and 1 other are the only ones that have used my specific treatment and it is experimental. It's working for us but that doesn't mean it will work for everyone. I can change the ingredients if are allergic to anything in the cream and just make an organic oil infusion but it's kind of messy. I don't have that one marketed yet, still working on a container and listing for it but I can make/sell it and it's cheaper due to the exclusion of other expensive ingredients. Sometimes, I use the oil if I'm being lazy and don't want to spend the time making the cream for myself, so it is very effective as well. Probably a bit stronger because there are no other ingredients diluting the amount of estrogen absorbing into the skin.

I hope this helps and feel free to contact me at any time with any questions, etc. Would you mind if I posted your email to my forum? It helps others find me on the web and helps me keep track of my cases and their stories. I'm easily confused, lol, and I have all my articles, 2 different email addresses, and my website I'm trying to keep track of. I don't want to miss anyone that needs helps. Have a great day! Lori

Wed, October 6, 2010 @ 11:51 AM

51. Holly and Lori wrote:

Hi Holly, Wow, been worried about you, glad you found some time to email! So sorry to hear about all the stress you've been going thru. Had a little bit myself with caring for my husband (very ill) for 2 weeks and then back to ER for stitches for my son last night, ugh. 4 trips to ER in the last week and a 1/2, Boy, when it rains it pours!

Well, your reactions definitely fit the time frame in correlation with your period! Was exactly my schedule before treatment. That's a good thing to know that your biggest reactions are occurring then. I'm sure you prefer to not have reactions at all but at least we can put some pieces together and hopefully get you controlled a bit.

Honestly, I do believe people like us suffer from the undermethylation/histadelia theory that doctors don't recognize but to try and fix it is a real pain, and very expensive. I've tried, with pretty good success at experimenting with the various supplements but I just can't afford to keep up with the daily handfuls of supplements due to finances and the fact that I'm just lazy and don't take them like I should. What can I say, life's busy and I like the easiest way of dealing with my health issues, which is rubbing on some cream twice a day. It's not a cure for the theoretical underlying condition but does control my progesterone reactions enough to function and have quality of life and I guess I'm just happy with that.

So, do you want to say the hell with all the supplements for histadelia and just try and control the progesterone allergy??? You have a lot on your plate as well and it would probably be easier for now to just try and deal with your major symptoms, which definitely does seem to have to do with your progesterone increasing before your period.

I do have to tell you that the instructions for treating the AIPA are written according to what has worked best for me and I am still working on timing and dosage. Had it right for a while and then messed myself up experimenting with oral doses but got it under control now. You may have to do some experimenting on your own and I will help you with that. I have to experiment on myself so I can let others know how I reacted to certain amounts, effective amounts, and timing. I've tried using it a few different ways and I'm really close to getting it completely right for me, lol. Everyone is different and produces a different amount of hormones, so it's obviously not an exact science with specific instructions that will work the same for everyone. I do hope you understand!

Just let me know what you would like to do or if there is anything else I could do to help! You and G get yourselves well, keeping you both in my prayers, and email me back when you get a chance. I worry if I don't hear from the people I know! Please do let me know how your appt with the allergist goes. Have a great day and feel better! Hugs, Lori

Wed, October 6, 2010 @ 11:57 AM

52. Erin wrote:

Hi, thanks for responding so quickly, it is so nice having support. I do have a few questions. I haven't read your entire series yet but will do so tonight. You mentioned tumeric, how much should I take and does it come in capsule form? Also I have had many symptoms throughout the years but they seem to take turns but really flare up after each of my pregnancies (specifically after I stopped breastfeeding) have you found this with yourself or any others? Also you mentioned effective birth control w/out pills what's your secret? I am so excited to just absorb as much info as possible about APD, ready to take control of my health finally! Thank you so much. Erin

Wed, October 6, 2010 @ 12:02 PM

53. Lori wrote:

HI Erin! Sorry I didn't get back to you yesterday!!! My internet was down all day and it took me 2 hrs on the phone with comcast (our provider) to get me up and running by this morning. Yes, the turmeric comes in capsule form and I believe it's 1 tsp. a few times a day. I'll have to double check but there is a great website called: http://www.earthclinic.com/CURES/boils.html ; that has tons of info on keeping staph at bay. There's many ways of using it so you might want to take a look and decide which would be the best way for you.You probably have MRSA, I've had it for years and curing it is very difficult. I've only had 2 spider bite looking breakouts since my initial infection when I was 19 and my husband just recovered from a severe infection in his face and neck. Might still need plastic surgery for it but he is fully recovered and healed now. Don't worry, you're not contagious unless your broke out and/or have open infection. MRSA is a real pain for everyone right now and just about everyone is a carrier.

I started having problems again with the APD after I stopped breastfeeding as well. I went into remission due to an increase in my progesterone because my body built up a tolerance during pregnancy and breastfeeding and then as soon as my hormones would drop, the severe allergy came back full force and probably worse. This is kind of how I'm treating myself. Instead of getting rid of or suppressing my hormones like the docs wanted to do, I raised them very slowly. The cream that I use works like allergy shots by allowing my body to build up a tolerance to my own progesterone. Kind of like tricking my body into thinking it's pregnant. I've had some trouble with getting my timing of using it and dosage right but I think I've finally got it. It is experimental and so far I've been very successful. The others that use it for the APD are doing very well also, but I give them heads up about what I'm doing and they keep me informed as well. We stay pretty close so we can keep track of how each of us is doing.

LOL, well as far as birth control, I do have 3 children. I've never been able to take birth control and I'm also allergic to latex. What my husband and I found worked the best after our last baby was the "withdrawal method" combined with a spermacide. You can get the spermacide at any pharmacy and you just insert the gel. Using both methods combined worked really well for us until I had my tubes tied. No more pregnancies anyway. You can get the kind of gel that lasts up to several hours so it's not something you have to do right before sex. Kind of ruins the mood if you have to get up, run to the bathroom, and put the gel in. Anyway, birth control will REALLY mess you up! They all contain progesterone and it can actually cause APD due to the synthetic hormones in it. Depo Provera and the Nuva ring are really big ones for causing APD as far as my research has gone. Depo Provera is what they used to diagnose me and I didn't have a big reaction until several hours later. It's called a delayed reaction. Most reactions occur immediately but it seems that the progesterone allergy builds more slowly and can take several hours to show significant signs of reaction. AND my reaction stayed under the skin, you could feel very large painful lumps under my skin but no visible signs like hives on my skin. Some women with APD never do show a significant reaction and have to be diagnosed symptomatically based on when your symptoms occur during the month. It's difficult to diagnose in those of us that have some OK months and other months that are completely disabling. Not sure why that happens and I think it has to do with which ovary is ovulating and how much progesterone it's releasing each month. I began alternating months, 1 ok, 1 life threatening so it was very difficult to pin point times of occurrences. Keep a journal of your symptoms to show the docs. They're not very nice, obviously, when dealing with a condition they don't understand and probably have never heard of. It gets extremely frustrating and you start feeling hopeless and insane when they tell you nothings wrong, it's all in your head. This is one of the reasons why I decided to battle it on my own with natural estrogen. I'm soooooo sick of doctors!!! We are whole new definition of PMS, lol, and they completely do not have a clue!

Please get back to me and ask me anything you want. I'm like a walking encyclopedia, lol! Hope you have a great day! Hugs, Lori

Wed, October 6, 2010 @ 12:05 PM

54. Erin wrote:

Hi Lori,

Wow thanks for all the great info! It sounds like you've been through a lifetime of this already, I'm glad your willing to share.

I went to see my Doc (internal med). She had heard of APD but I got the feeling she didn't know much about it. She first looked at all my symptoms and wanted to test me for Lupus (or start testing as it is a long process). It's an ANA test. She said that even if it came back neg. that doesn't mean I don't have an autoimmune disease. Tomorrow I go to my OB (her idea), and bring my test results and he will hopefully test my allergy to progesterone (that's the plan). Nervous about the Lupus test cause that has been a concern for sometime now. Do you know of anyone who has both Lupus and APD? I know a lot of Autoimmune diseases run together.
She also mentioned that if it was APD that there is really any treatment and since I am only 30 they wouldn't use hormone treatment cause I'm so young. I like her but if I am diagnosed with either or both I will be seeking a specialist or an allergist or both. I know a great family doctor/allergist who is really knowledgeable in rare conditions, the catch is he doesn't accept any insurance.
I am concerned either way about my daughters futures. I have two ages 7 and 1. Do you know if APD is hereditary? I have read that is can be but I have also read (and you mentioned) that it can be caused or worsened by birth control. I was on birth control for a long time (high doses and non stop (no breaks)) because of severe Endometriosis in my c-section incision (another rare condition that took me several doctors and "it's all in your heads").
I assume that could have played a role in the APD as well.

Sorry just ramblings today, a lot of information to try to absorb so quickly. I have started eating drastically less sugar and reducing my wheat intake as well as I have read it can make symptoms worse. Have you had any luck with diet change.

Well I'd better go. Thanks again for the info! Erin

Wed, October 6, 2010 @ 12:07 PM

55. Lori wrote:

Good Morning Erin! Yes, a lifetime of medical nightmares, literally!!! Glad your doc had heard of it but most don't know anything about it. Very lucky if they've even heard of it. My Immunologist is the one that had heard of it and did the testing with Depo Provera but he referred me to Ob/gyn. Went to Ob/Gyn and they didn't really know what to do with me except remove my female organs or try Lupron (injection to shut my ovaries down). Both experimental and highly dangerous for me with other possible serious complications. That's why I use the all natural estrogen, to many risks with what the docs wanted to do. I just get bounced back and forth between Immunology and Ob/gyn, so I take care of it on my own. They don't know what to do with me and pretty much just approve my treatments I have chosen and keep updates on me. They are both there for emergencies but haven't had any since I started my treatment.

I've had the ANA test which showed 1:80 abnormal, was sent to rhuematology and they said that I had fibromyalgia. Whatever!!! I saw 16 specialists before diagnosis and survived 3 yrs of full blown anaphylaxis/organ failure without epinephrine injections or antihistamines. I only used natural treatments depending on which organs were effected during my episodes. Rheumatology told me that my ANA wasn't high enough for lupus and I don't think I have that anyway but is a possibility. I believe I have a common condition called histadelia, which is another condition that doctors don't recognize. It's where your IgE levels are too high all the time and you become allergic to strange things, many things causing full blown autoimmunity. I have another hub written on this but it only touches the surface. I need to write one on undermethylation which is a possible source of the histadelia but it's very complicated and hard to explain. BIG giant vicious circle of imbalances in the body!!! I understand it all but hard to explain.

Anyway, not even really sure if Lupus exists. It does but I think that it is caused by certain imbalances within the body that can be corrected by diet change, supplements, and hormones. Hormone imbalances can cause lupus!!! Don't let the docs tell you any different. It's another highly misunderstood condition that doc's use steroids to cover up but not correct. They think the only cure for conditions like this are drugs or surgeries that only make things worse in the long run. I have a seizure disorder, gastroparesis, and liver disease on top of the AIPA from all their wonderful prescriptions. I used to only have the APD but with my other conditions caused by doctors lack of knowledge, my APD turned into AIPA mainly due to the liver disease. The liver is what controls how much histamine (IgE) and hormones stay and go from the body. Have you had an IgE test done??? That's another test you should try and get done (allergist). Try and get it done when you are reacting to progesterone before your period. Will give a good idea as to how severe the progesterone allergy is. Normal is 0-100 and I'm at 218 just on regular days. Not sure how high it really got when I was suffering from anaphylaxis because they never suspected severe allergic reactions. My symptoms were mainly internal with some mild outbreaks of hives or swelling but only once in a while. Mostly affected my heart, lungs, stomach, muscles, joints, throat, mouth, and bladder.

Yes there is treatment, but again, it's not guaranteed and all of them are experimental. Most women respond very well to estrogen treatments, which is what my cream is. The difference between my cream and prescriptions is that it is an all natural/organic bioidentical phytoestrogen. Meaning the body can use the estrogen exactly the same way as your own bodies estrogen. The prescriptions are synthetic forms derived from horse urine and are the main cause of female related cancers. This is why I developed my own natural form of treatment. I'll pass on the urine and cancer causing treatments, :) I've never been able to tolerate any kind of synthetic hormone anyway so that option was out for me. If you went into remission (symptoms subsided) during pregnancies and breastfeeding then it is highly likely that estrogen will be a great treatment for you. Remission yes, but not a cure. I could probably cure myself if I had the money but I'd need to be a millionaire and that's not happening anytime soon, lol.

The heredity issue is complicated too! None of this is easy to explain so please forgive me if I babble! Yes, APD/AIPA can be hereditary and is highly likely that your children (daughters) will develop something of the sort. They may have been born with the high histamine level like you, myself, and my children. All of us have high histamine and all of us have severe allergies. Here's the catch, they probably already have symptoms of the high histamine level (IgE). These symptoms could be anything! Reactions to food, things in the air, hayfever. Everyday normal allergies that no one really thinks twice about. Doctors call these allergies in children "NORMAL" but allergies are a form of autoimmunity. It is an unnatural response to something that the immune system should NOT respond to but does. Symptoms could be sleep disturbances, ADD, ADHD, crying fits, anger, inability to focus, autistic symptoms, belly aches, colic, belching, headaches, stuffy nose, sinus problems, ear infections, on and on!!!! These things that the docs consider normal nowadays and treat with drugs to cover the symptoms up are not normal at all. VERY VERY difficult to pinpoint the exact triggers which could be many. Undiagnosed and left untreated, these "normal" allergies never really go away. They just manifest differently like in you and me. The body begins to recognize even itself as being foreign and the immune system could think that hormones, sweat, tears, anything, is bad causing autoimmunity. SO, your daughters may never develop APD but could more than likely develop other conditions related to having high histamine levels. Could be depression, bipolar disorder, anxiety issues, then again they have their father's genetics as well. It seems to me that the hereditary part isn't so much the actual condition of APD but the high IgE. Honestly, they could just end up with hayfever and never develop anything further than that. I can speak from experience on this because I have 3 children that have very similar problems as me. Especially problems during childhood. My daughter is already allergic to her own sweat and possibly her hormones, she started with the hives at 10, just like me, when she started going thru puberty. Both my boys have horrible allergies. My one who started puberty at 10, now has mild autistic and ADD symptoms. He's super high strung!!! Boys have the same hormones as girls, but they are converted into testosterone. I almost wonder if my son has a progesterone allergy??? He's highly allergic to everything! All my kids have severe allergies but that doesn't mean that they will all have the APD. The high histamine will affect each one differently based on their own genetic make up. Hope this is all making sense! Here's a link to my other hub about high histamine:

http://hubpages.com/hub/Explanation-of-Allergies-Best-Allergy-Relief-Natural-Antihistamines

I'm sure the birth control played a huge role in the APD. They are not bioidentical hormones and so the body begins to recognize them as foreign. BUT they are close enough to the own bodies hormones for the immune system to start recognizing your own hormones as foreign too. I believe pregnancy puts endometriosis in remission or at least controls it which is why they put you on the BC. BC raises your hormone level and that is what happens during pregnancy. It's just not natural hormones doing it. I have kind of tricked my body into thinking it's pregnant by increasing my estrogen which also increased my progesterone allowing me to build up a tolerance to both.

Well, I've had alot of success with the no sugar, low carb, no wheat diet but my weight gets way too low so I'm stuck between a rock and a hard spot there. I felt fabulous but looked like death! It does help if you can keep your weight up. I battle candida (yeast) which became pathogenic (infectious) in me by the age of 14. It's a huge horrible other battle. I take probiotics and eat coconut oil to help keep the yeast under control. I can tolerate sugar and carbs but I do still have mild reactions. It will certainly help by lowering your histamine level all around, yeast increases histamine too, so the diet can reduce symptoms to your progesterone.

Wow, super late for work, lol. I'll write more on this as soon as I get a chance! Have a great day, Lori

Wed, October 6, 2010 @ 12:20 PM

56. Sarena wrote:

Hi, I just found this site and have been suffering with hives all over my body since November 2009 and on several allergy pills to get rid of them. Sometimes they are severe and sometimes they are more mild. I have done so much research, thinking I have become allergic to dye in food or preservative. I thought that I was allergic to Tide and I have switched everything to all natural products. But I have still been suffering with these hives. I finally went to an allergist last week who stated he believes that I am allergic to dust mites. He thinks this because they are worse when I wake up in the morning, and I always tend to sweat at night and my body heats up. I did have cold urticaria when I was about 13, whenever I was cold I broke out in hives on my knees elbows and feet.

I am exhausted of this, I will literally have massive hives that itch, burn, and swell together. I have had menstrual migraines since about age 21. I am not on any birth control pill right now either. I went on it for a short period of time and I know that it fluctuates, the hives, and it did get worse and I believe this is when I was on the NoreBe, which is a progesterone only pill.

How I found this all out, is because 2 nights ago I was watching mystery diagnosis and this woman was allergic to her own hormones and then I realized, this could be what I suffer from. I have allergy tests scheduled for mid August, I do not want to do those and he gave me a ton of allergy pills and nasal sprays to use. I have just stuck with Claritin, it seems to work the best. But could it be progesterone, if it gets worse in the night time and in the morning and then goes away, or really dust mites. I have washed my bedding several times and at least every few days and my bed is wrapped in a plastic bed wrap. The woman on the show had a total hysterectomy and she no longer suffers from her symptoms.

What if I want another baby, I am 36, is this possible if I am allergic to my own hormones. Also, both of my pregnancies, I was in pre-term labor for months. Is this a side effect of your body trying to deliver early to get the progesterone levels down. I have so many questions that I have unanswered. Any help or information would be fabulous. Thank you so much!!!

Sarena

Wed, October 6, 2010 @ 12:23 PM

57. Lori wrote:

Hello Sarena!!! So glad you found my site! I actually have tons of info for you which I'm sure you're very interested in. Our stories are similar but the hives that your talking about started in me when I was about 10yrs old, during puberty. Yes my hives were always worse at night when I would heat up and it also seems that more progesterone is released at night, at least it seems that way for me. When I was 10 and my daughter was 10 we both started breaking out in hives and swelling, but mostly only at night. It could be a dust mite allergy as well, and would be good to get checked but sounds like you have more than that going on. I'm allergic to dust mites but it really only causes sinus problems for me.

The cold intolerance allergy, is what they thought I had when I was 10 and it wasn't, it was my hormone allergy along with a sweat allergy. I'm allergic to my sweat as well, and since YES you heat up and sweat at night, could be sweat causing hives and swelling, progesterone coming out in your sweat, or a combination of both. My sweat usually only caused hives when I was exposed to cold and then heated back up again like in a warm bath. Swore I was allergic to water, lol. Depo provera is what they used to diagnose my progesterone allergy and their is also a sweat allergy which your allergist should be familiar with. He may not even know about the hormone allergy, it's very rare. Especially my form which causes anaphylaxis.

So funny you mentioned mystery diagnosis because I've sat down to write them my story and never have sent it to them yet. I'm only the 10th diagnosed person with this specific kind of allergy. I believe many women suffer the progesterone allergy causing hives, acne, blistering, and swelling, it's called Autoimmune Progesterone Dermatitis. My form is the severe life threatening kind in which I go into anaphylactic shock and my organs fail, it's called Autoimmune Progesterone Anaphylaxis or Progesterone Induced Anaphylaxis. There are many other cases like mine, but they seem to all be diagnosed as idiopathic anaphylaxis, meaning they can't find what is causing the severe reactions.

I went into preterm labor during all of my pregnancies where I was on an IV for 6 months with my first. My progesterone allergy got much worse in the beginning of pregnancy but then went into remission at about 3 months pregnant where I was healthy for the first time since 10 yrs old. I built up a tolerance to my progesterone as my hormones raised during pregnancy. Then after pregnancy, my allergy came back 10 folds until finally leading to anaphylaxis. Sounds as though you've always had problems with your hormones since you've had the migraines. They could be a sign of the progesterone allergy, I'm diagnosed with classical migraines too. By the way, I'm in remission!!! Yes, NO hysterectomy, I use a natural estrogen treatment, and I've been in remission for 8 months. I still have some minor problems from other allergies and health problems that I suffer but no organ failure or ER visits from full blown anaphylaxis.

The NoraBe that you were on really makes me wonder if it's exposure caused you to acquire the allergy. If your hives increased while taking it then I think it's pretty safe to say that YES, you probably are allergic to progesterone. It can be acquired from taking synthetic progesterones (birth control) or you can just be born with the allergy. Most women that suffer from the hormone allergy have been exposed to birth control pills causing an unnatural immune system response to progesterone. Well, when the immune system responds to even synthetic hormones, it could cause the immune system to respond to your own natural hormones!!! I was just born with high histamine and the hormone allergy so I have never been able to take birth control due to severe reactions from the synthetic hormones.

My treatment options were extremely limited, hence my own natural treatment. It is experimental, it is working, it is safer with many benefits, and not only myself, but 2 other women (suffering hives/swelling) are also now in remission using my treatment. Neither could find a doctor to test and diagnose, they just did they're own research, self diagnosed based on symptoms and timing of symptoms (worse symptoms are 3-10 days before menstruation and start to subside when you start your period), and they decided to try my treatment. Thankfully it is working for them too! Estrogen works in some cases but not in all.

So many women are desperate for diagnosis of this "mystery" condition but most never get tested or diagnosed due to lack of knowledge in the medical profession. I got really lucky and pushed really, REALLY hard for tests and diagnosis. If I hadn't, I would have died from anaphylactic shock/organ failure. Just some freak allergic reaction is what the doctors would have called my death if I hadn't gotten diagnosed. My children have similar problems as myself, so I got pretty crazy when it came to getting a proper diagnosis. I was scared to death for my kids! Yes, it can be genetic and not just in daughters. Sons may be born with naturally high histamine levels and antihistamines like benadryl and claritin only go so far. Eventually you build up a resistance to them and they stop working. Just to warn you.

Yes, you can still have children but it would certainly be heartbreaking if you miscarry. With your history of preterm labor and a possible progesterone allergy, 3 things could happen. You could miscarry, have preterm labor issues, or go into remission and have a fairly normal/healthy pregnancy. I went into remission but I still had preterm labor. 1 miscarriage. I was able to carry 3 children with the help of IV's and meds. So not all hope is lost if you decide you want another baby. I was offered to have a hysterectomy but that could come with a whole new set of devastating consequences. Especially since I couldn't have any kind of hormone replacement therapy.

I have many severe allergies to soaps, lotions, conditioners, laundry detergent, etc. We use Arm and Hammer no dyes or fragrance, organic castile soaps (vitacost.com- Dr. Woods Castile soaps), no lotions with PARABENS (read the labels- it's a very bad estrogen that blocks good estrogen from binding to the receptors), and I have to watch what I eat and drink constantly. It's such a pain but better than being in ER all the time.

You may have other sensitivities compounding the problem. If you have a food sensitivity, it raises your histamine, dust mite allergy will raise your histamine, then your progesterone level raises, raising your histamine even more until you have reactions like you are. Honestly, the regular allergy tests for food, dust mites, and things in the air wouldn't be a bad idea so you could try and avoid these. This would help keep your histamine level from spiraling out of control and you may be able to handle your progesterone better. Probably still react a bit but maybe not so severe. Hope I'm making sense, lol! It's pretty complicated. I have a few articles published with my story (childhood, pregnancies, diagnosis, testing, treatment options, etc) and how high histamine causes autoimmunity if you wanted to take a look. You can go to my website:

http://www.awarenessforaipa.com/aboutme

There are hubpage article links towards the bottom of my page with my whole story from childhood to diagnosis and treatment. Another article called "Explanation of Allergies" is really informative as well, that may help you understand what I mean about exposures causing histamine overload leading to autoimmune disorders. Just click on the links and it will take you to my articles. Here is the link to my forum:

http://www.awarenessforaipa.com/blog

I'm still importing emails (time hasn't been on my side lately, lol), but you can read other stories about people that I help. Would you mind if I posted your emails there???? I won't do it without permission but it's sometimes hard for me to keep track of all my emails, my forum, articles, etc. If I have all the info on one page then I can go right to it and keep track of everything more easily. Just let me know. I certainly understand that it's a pretty personal subject but I try and get as much out on the web as I can so others can find me. It's great to have support and know that your not alone but I completely understand if you'd prefer to keep it private by emailing only. I've found that APD/AIPA is not as rare as the doctors may think. I get emails everyday and have 100's of emails to import just not enough time to get it done right now. After I published my hubpage articles, I got tons of emails and truly didn't expect to get the response I've had. Been kind of in a tailspin trying to keep up with individual cases ever since. Please forgive me if I get confused (I'm easily confused) or ask you the same questions a few times :). Sometimes my memory fails me a bit. Hopefully I will be able to get everything caught up when my summer job slows down in the winter.

I hope this helps you and PLEASE feel free to ask me anything!!! I'll do whatever I can to help! Hope you have a great night, Lori

Wed, October 6, 2010 @ 12:27 PM

58. Sarena wrote:

Wow! No I do not mind you posting my email, as long as you just delete my name. I am very interested in what your treatment is. I had a huge flare-up last night and my period is due this weekend and now I am going on my third allergy pill to try to get it under control. I would love to hear about your treatment and try it, I am so tired of this!!!! Thank you so much!!!! Sarena

Wed, October 6, 2010 @ 12:29 PM

59. Lori wrote:

Good Morning Sarena! Running late for work as usual, lol, but wanted to drop you these links about my treatment before I left.

http://hubpages.com/hub/Im-Allergic-to-My-Hormones-Awarenss-for-Progesterone-Induced-Anaphylaxis-Autoimmune-Progesterone-Anaphylaxis-Part-3


http://hubpages.com/hub/Im-Allergic-to-My-Hormones-Awareness-for-Progesterone-Induced-Anaphylaxis-Part-4

These are the direct links to Part 3 and 4 of my hubpage articles about my treatment options and treatment that I'm currently using. Links to Parts 1 and 2 are also found in these articles at the bottom of the page. Feel free to vote me up and leave a comment if you want. Just helps me with my google rankings so I'm found on the first page of the search engines for other women to find. Hope to hear back from you very soon!!! Have a great day, Lori

Wed, October 6, 2010 @ 12:30 PM

60. Sarena wrote:

THANK YOU SOOOOOO MUCH!!!! I will definitely vote you! I appreciate all of this and am already passing your information on to physician friends and others who did not know about this! You have a GREAT day as well! Sarena

Wed, October 6, 2010 @ 12:31 PM

61. Lori wrote:

Hi Sarena! Your very welcome! That's great that your passing the info along, more people, especially doctors need to know about this. Not sure if you noticed or not but on the links that I sent you about my treatment, there is an ebay block with my cream in it. I marketed it because of all the email requests. Didn't know if you wanted to order and try it or not. I send really specific instructions for using it but you kind of have to figure out what works best for you. Hope you have a great day, Lori

Wed, October 6, 2010 @ 12:32 PM

62. Tiff and Lori wrote:

Hi, I responded back to your email quite some time ago but not sure if you got it. Please do contact me and let me know. I'm more than happy to help you with the Progesterone allergy and give you more info. Thanks again, Lori

Wed, October 6, 2010 @ 12:36 PM

63. Tiff and Lori wrote:

Yes, thank you, I did receive your email. I am trying to decide what to do. I live in a tiny town in Southeast TN, with doctors that wouldn't even begin to know how to help me. I've even been to Vanderbilt in Nashville with no luck. I've been diagnosed with a very rare skin disorder, but they still weren't sure about it. A few doctors have suggested genetic testing and allergy tests. I was fine while I was pregnant and up until my period started again. At the moment, I feel like I've been run over by a truck. All of my joints are sore, and I know it's because I'm approaching ovulation. I would like to try to find a doctor that would listen to my symptoms, without just calling me crazy. I am hesitant to try any medications or remedies while the baby is still nursing. I am going to try to get an appointment with one of the more intelligent doctors here to see if I can get things in order for further testing. Would you suggest the allergy testing for this sort of problem?
Thanks,
Tiff

Wed, October 6, 2010 @ 12:37 PM

64. Tiff and Lori wrote:

Hello, I was actually going to Cleveland Clinic for rare genetic testing (muscle biopsy for mitochondrial disorder) right before finding my Allergist/Immunologist. I definitely recommend getting allergy testing!!! The basic RAST test, IgE test (histamine levels), a skin test with an injection of Depo Provera (progesterone), and you may want to be tested for gluten as well. These are all the tests I had done to get solid diagnosis. Try your best to get the IgE test done when you are symptomatic!!!None of them may show anything at all and the Progesterone allergy specifically may have to be diagnosed based on your symptoms and timing of symptoms alone. That is, if the allergist is familiar with this condition. Believe it or not, it's not as rare as they think. I talk to women all over the world and get emails everyday. Some of them have opted to try and get solid medical diagnosis and others have said to heck with the doctors, they're all idiots and decided to self diagnose and treat all on they're own with success.

I can tell you right now that with you being fine during pregnancy and the timing of your major symptoms like, now, during ovulation that YES I'm about 300% positive you have a progesterone allergy (APD). Not sure if you've ever been on birth control but birth control can cause you to develop this kind of allergy. This probably being the reason the condition isn't as rare as the doctors think it is. Maybe they know this about birth control but don't want to test and diagnose us women because then no one would want to take any kind of synthetic hormone?!!!

I used to have the severe joint pain, along with severe burning muscles that they diagnosed as Fibromyalgia and/or Pschosymatic. I believe a lot of women who have the progesterone allergy may actually end up getting diagnosed with rheumatoid arthritis as well because of the severe joint pain it can cause. I'd run fevers and get horribly swollen glands in my armpits and neck, feel like I had a nasty flu bug, and break out in hives or have facial swelling sometimes. This was actually before I started suffering full blown anaphylaxis due to lack of diagnosis. The symptoms are sooooo horrible and I feel so bad for you!!! No one understands the disabling symptoms of this type of allergy and it truly is disabling. Although my Allergist is the one familiar with this condition and confirmed the positive diagnosis, he STILL believes that I should have been able to work all these years, continue to work, and refuses to help me get disability. He's male, LOL! I am considered to be in remission and I'm soooo much better it's unbelievable but I do still have my glitches, mostly food related and I'm actually going in today for gall bladder testing. If my current stomach problems are gall bladder related, I have my gall bladder removed, and I'm left symptom FREE after all these years, I may consider my treatment an actual cure. My stomach issues and other allergies are the only things I still battle and they come and go, have for years but seem to be more food and sweat related than anything. I originally thought it was all due to my hormone allergy. I had so many symptoms in every area of my body that it's been difficult trying to put all the pieces together.

If you have this allergy or suspect you have this allergy DO NOT TAKE BIRTH CONTROL!!! Could cause violent reactions like it did in me. Print up everything you can find about the allergy (case studies, my story, my forum, other stories, etc.) and take them to your doctors. My website has really good links of case studies and other stories so you don't have to search all over the web. Make sure you are fully armed because they may seriously laugh in your face when you tell them you think you have this. They laughed in my mom's face when I was 10yrs old and she told them she thought I was allergic to myself. Sounds so insane but she was right!!!

I ask everyone this but do you mind if I put your emails on my forum for other women to read? It helps my website get found by other women and helps them relate to you, me, and everyone else suffering for APD/AIPA. I completely understand if you would rather keep this a private matter and will not post if you prefer but I do get tons of emails and it's hard for me to keep track of specific details on everyone. My forum allows me to keep everyone all in one place so I can just scroll thru for a quick update.

Hope this helps you, feel free to contact me at anytime, and Please do keep me updated on how your doing! Have a great day, Lori

Wed, October 6, 2010 @ 12:40 PM

65. Wendy wrote:

Hi, and thank you for all your work. I am suspicious that I may have an allergy to Progesterone after researching this on the internet. I'd just like to see what you think:

No specific allergy symptoms over the years except: random hives when I eat shrimp - it's like one out of every three times. I've never, ever thought about whether I was on my period at the time. Various "autoimmune" type afflictions with ZERO positive tests or help. Difficult periods. I had the best pregnancy ever. While on the Ortho-Evra patch, experienced light-headedness, dizziness, and loss of vision a couple of times - was warned that I could have a stroke. Switched to Nuvaring.

After my son was born in 2008 - I went back on Nuvaring. I had craziness happen this January 2010. I missed my period completely. I had pregnancy symptoms - only totally intensified - nausea, heartburn,dizziness. I removed my Nuvaring b/c of possible pregnancy and feeling just out of sorts. Negative pregnancy tests, this goes on through February. I have never felt worse in my life. I was tested for hormone levels, all negative. I had moments where I felt electric and about to pass out, ready to barf at any time. The doctors are all looking at me like I'm crazy. One doctor tells me that it's psychological because I really want to have a baby. Uh. No, sir. I was on birth control before this, loser. The only other thing is a irregular pap smear leading to the recommendation of a colposcopy. I have no insurance. I have no help. I can't even get the colposcopy b/c there are no "clinics" where I live.

Ever since I have been off of b/c. I've had some pretty good pms. Then October: I break out into hives/rash during my period. The only explanation for this per my research is TSS. I stopped using tampons and freaked out. Little spots EVERYWHERE (concentration on torso, back, arms and fingers, groin and thighs) that are so itchy. Benadryl helps the itch but not the spots. I also had tuna (which I eat regularly) and thought maybe this was the cause. I felt awful.

All this month, I've felt "off." Then this period comes: the *moment* my period started - Hives/rash everywhere, same misery. Big PMS, lotsa intolerance towards the boyfriend, etc.

This is the only thing that makes sense to me. Have any insight? Thanks so much.

Fri, November 26, 2010 @ 1:41 PM

66. Wendy wrote:

Addition: I was worried especially at the thought of this getting worse and having to go to the ER like so many people. Is this progressive?4b

Fri, November 26, 2010 @ 1:43 PM

67. Wendy wrote:

I am sorry, I just thought of another thing: could hyper-sensitivity to certain over the counter drugs be a side effect of the allergy? I cannot take things like sudafed or cold medicines without feeling like I'm allergic to those.

Fri, November 26, 2010 @ 4:17 PM

68. atlantapug wrote:

Thanks for your website.
My sister was FINALLY diagnosed with APD after 5 years of hives, swelling and anaphylaxis. She has been told she's crazy, that she had hives from panic disorder, that she must be eating something she's allergic to... you name it. She has been so sick that she has a PICC line (implanted iv line) just to inject 100mg of Benadryl every 4 hours so she won't die.
My allergist tested her last week, and of course, it's positive for APD. She is finally getting a cure, total hysterectomy/oopherectomy in 2 weeks.
Best of luck to all, I sometimes wonder if it's because the sufferers are women that no one really listens.

Sat, December 4, 2010 @ 8:43 AM

69. Lori wrote:

Hello! So Sorry to hear about your sister but at least she found a knowledgeable doctor and has FINALLY been diagnosed with the AIPA/APD. NO ONE except the sufferers of this condition have any kind of understanding how life threatening or disabling this autoimmune disorder is. I was also offered the hysterectomy/oophorectomy or lupron injections. Neither were treatments that I chose due to possible further medical complications. My treatment is a natural and organic phytoestrogen that has been maintaining remission for me for almost a year now, no anaphylaxis or organ failure for 11 months. I too, suffered the full blown anaphylaxis that docs said was a panic disorder, I was a hypochondriac, or I was psychosomatic. It's so devastating and traumatic to know you are dying and NO ONE will help you. They didn't even know to give me epinephrine or benadryl every time I had to go to ER. They just slapped monitors on me and sent me home. Please let your sister know about my website, it's so much easier to deal with if you know your not alone! Wish her luck for me and please let me know how her surgery goes!!!

Sat, December 4, 2010 @ 12:14 PM

70. Lori wrote:

Hi Wendy- Did you get my emails??? Please keep me updated!

Sat, December 4, 2010 @ 12:16 PM

71. Lori wrote:

Just wanted to let everyone know, that for some reason not all of my emails are coming thru. Not sure why so here is an alternative email address to reach me: loricody1@comcast.net. I just received 3 blank emails with no address or message. Please try to get in contact with me at the other address. I don't want to miss anyone! Hope you all find this!!!

Tue, January 4, 2011 @ 7:08 PM

72. Kyla wrote:

Hey. I finally found a forum on this disease. I am currently undiagnosed but under the care of an immuodermatologist (one of the very few in Canada). I have been sick for an unknown amount of years. I started getting swelling when I was in my early teens in my ankles and I was always tired and crabby. Then after I got pregnant with my daughter when I was 17, I developed a more swelling (but only around my menstration time) of the vulva and developed breathing difficulty. It was thought that I had asthma, and I was given adn inhaler but in the end they ruled asthma out and took it away even though it helped me. I never told anyone abotu the swollen vulva not knowing that that is a sign of anaphylaxis.

I then started getting sinus infections and bacterial infections every month. Medications worsened the condition adn by the time I was 20 I was a full fledged pill popper with sinus meds, pain meds and antibiotics. I wont even get into all the symptoms I had by this point there just to many. By age 20 i was getting full face involvemnt and swollen eye lids and I tried to slowly take myself off of all the drugs I was on one by one to figure out what was causing my allergy (i did the same with food). Even clean from drugs (other than antiobiotics that were needed) and off of antiobiotics when I didn't need them, the symptoms persisted.

Over the years I have been checked out from top to bottom for every autoimmune disease you can think of (every woman in my family has at least one). I finally took picturs of all my symptoms (swellings now found to be in my mouth, ankles, face, vulva) and we found one thing in common when i took pictures and video taped my attacks. The all were happening in and around my periods. My periods are highly irregular and even stop for a few days at a time to restart again. I can go 30 days without menstration one month only to have it start at day 18 the next.

I am now being sent back to an allergist to rule out food and maybe get a progesterone test done if they have access. Im getting sent to an endo who is going to be putting me on lupron and I now have a fabulous dentist who and immunoderm who are trying to keep inflammation down on thier end (mouth washes and Im on plaquinel oral antinflammatory used to treat skin symptoms of lupus). The derm believes that righ tnow its a 50 50 shot that I have autoimmune progesterone dermatitis. Either that or its a connective tissue disease that it just developing EXTREMELY slowly over a course of 20 or so years thats only skin and mucous membrane involved at this time.

Im still waiting on the allergist appointment and endo...allergist is on April the 6th and the endo referal just went through. I feel better on the plaquinel but we still notice me getting mild attacks every month just before my menses. But its enough to keep it at bay for now till te other specialists get involved.

Whether I have this disease or not..I pray and empathise for all that do.

Mon, February 21, 2011 @ 8:19 AM

73. Lori wrote:

Hello Kyla! So glad you found my forum!!! Sounds like you've been a long time sufferer as well. It definitely does sound like AIPA which would be very hard to diagnose or even suspect with your menstrual cycle irregular the way it is. Seems like your on the right track as far as the docs you're scheduled to see. You'll want to take them all the info you can find on APD/AIPA, there are some links on my home page and some say how to do the test for the disease. It's a very specific test and not one that the Allergist will just normally run. He, more than likely has never heard of AIPA/APD so it's best if you go in fully armed with the info. I was exactly like you when I was a teen, and popping pills in my 20's for various infections/pain. It's a progressive condition and if the docs fail to get you tested and diagnosed, I have a treatment that I developed and have been in remission for over a year now. Please to stay in touch and let me know how your future appointments go. Here is a link to my new Facebook account for APD/AIPA sufferers and a few of my treatment users:

http://www.facebook.com/home.php#!/profile.php?id=100001460848651

Please feel free to join us!

Wed, February 23, 2011 @ 7:38 AM

74. Kyla wrote:

I've always have known that whatever it was surrounded the menstration. Hence why I would tell them at the emerge that i was a few days away from my period whenever I came in with severe stomache pain and vomiting (I've needed IV 5 times in teh past three years). But thats eth thing, almost all autoimmune diseases flare up during menstration and most can be skin adn mucous membrane involved. They kept testing me for crohns (with my half brother has). Of course, negative.

I have a chronic cough now (have had it since 2002) and my voice changes and gets wraspy every flare up (before it only happened sometimes..now its teh norm).

We know Im allergic to antiobotics and have in fact have general rashes along with the angioedema reaching all the day down my back. Ive peeled (mildly) all over the top half of the body twice now along with a flushed sunburn rash (i also have eczema). So we know that tehre is acute attacks, but even aftr taking me off everthing teh angioedema still flares up every period. Docs say we need to find the ORIGINAL problem. For years they wer ejust treating my acute problems and not gettign to teh bottom of anything. How could they when they weren't even aware that this disease even existed till I told them. It has felt like ive been on a ferris wheel not able to get off.

Ive had one misscarriage and in all of my pregnancies (ive had three now including the lost one) my blood pressuer dropped dangerously low evertimeand i would pass out. I had a seizure with my first child and thats when the low pressure first came about chronically.

My youngest is only not even two and durign the pregnancy swellign appeared everywhere (so much they tested me for yeast amd numerous other infections etc etc since my vagina swelled up from abut 6 months on) and I developed PUPPS rash (supposidly) that was just a guess even though i was extremely anxious along with the rash the alst two months of pregnancy. I anxiously delivered him adn suddenly this almost half body rash dissapeared within 48 hours...ive never seen anything like it.

Anyways i knew to keep my camera rolling for teh months after as i knew it was gonna be real bad...hence how i finally got sent to teh immunoderm. My GP looked at me horrified when i brought in six months straight in video of angioedema in multiple spots etc I had found APD/AIPA online and asked her if it was real...or course, she had never heard of it but shes told me she'd check it out. She came back with a yes...it is real and she couldn't beleive it but since all my other tests have been "unremarkable" (thats a term they use often in my files) it actually fit the description of what i captured on camera. Immunoderm made sure to doa full evaluation to rule out all teh stuff ive been tested before as well as genetic skin diseases such as another rare disease called Porphoria. All of course came out negative and now we are going after the Aipa diagnosis/testing.

I'm getting that weird feelign that this may be "it" but i dotn want to get my hopes up if it isn't and get that dissapointed feelign all over again whenever i thought they were gonna "get it".

Mon, March 28, 2011 @ 2:18 PM

75. Lori wrote:

Hello Kyla! So Happy you found my forum!!! I'm so sorry you've suffered so long! Most of us have waited years and had to do the research, diagnosis, and treatment ourselves. That's fantastic that you found a doc to listen to you and look the APD/AIPA up and test you for it. It definitely sounds like this it! I swelled and had massive hives, stomach problems, frequent infections, from the age of 10 on (as soon as puberty hit). The APD progressed to the anaphylactic form a few years ago. It is progressive so it's great that they are finally getting tests done before...Some tests show negative but doesn't really sound like it should be a problem in your case. If the testing is neg, they can surely diagnose you based on your symptoms and taping of reactions. I sooooo wish I had pics and video of how sick I was, great idea. All of my tests showed unremarkable as well, except for an abnormal positive ANA that rhuematology said was a false neg. The APD/AIPA was the only other test that showed positive for me. After so many years of being tested for EVERYTHING the docs just said I was psychosomatic, hypochondriac, or tried to send me to mental health, which was devastating along with all the horrible life threatening symptoms. Keep your chin up, seems your on your way to resolution!

I have a new Facebook account for APD/AIPA if you would like to join me and a few of the others:

http://www.facebook.com/home.php#!/profile.php?id=100001460848651

Trying to get all of us together in one place and see if we can get further testing and education done for APD/AIPA since it's currently considered an orphan disease. There are many of us that suffer from the progesterone allergy and the doctors need to start recognizing it!!! Please feel free to ask me anything. I would love for you to keep me updated with your tests and doctors visits if you don't mind. Hope you have a great day! Lori

Tue, March 29, 2011 @ 7:32 AM

76. Kyla wrote:

I will keep you updated on how it goes. Im always nervous going to see a new specialist cause u never know how you are gonna be recieved by them etc etc. The endocrinologist already knows why im going in there..hes the one who came up with te lupron idea to stop my mensus so hes all good. But its the appointment next weds that troubles me. I wont know how this guy is still i meet him. The gp's on board, te derms on board and the endo is on board..so its just this allergist now if my food tests are negative.

I encourage anyone out there with any visable symptoms to record it on camera. I wish I had done it earlier...but when your young you just think you dont have any other options. Their doctors right? After a major general rash and eight months of pure hell straight I finally smartened up and realized...what the hell am I argueing with them for? I can just take pictures LOL All those years wasted..I could have done this when i was 20.

For anyone who takes my idea and takes pics etc, make sure you have the date put into the corner. That way you can truly see if there is in fact a pattern (my attacks are inbetween 18-27ish days apart) depending on of course how late my period is or how early my spotting starts. It was disgussting how predictable it became. I just had an attack of angioedema a few dyas ago and my periods ending in next few days. So the next attack sho[uld be closer to the end of the month in april (usually my periods are late).

Also, next advice for picture taking if anyone wants to do it...get before and after pics at th same angle etc etc so show what it looks like when you are not flaring vs when you are. My swelling looks very mild. Its not te amount it swells but the many different body parts that swell at the same time. Mine is generalized so its not as easy to visibally see since its so spread out.

It didn't actually look that bad. So if u didn't know what i looked like on a regular basis..u would have just thought i was chubby in teh ankles and legs or that i looked really really tired. At first docs thought i have extra fat around my ankles so i took teh before and after pics to show how much they did in fact swell during flares. They can't argue with what they thenmselves see. I brought my symptoms to them, basically invited them to take a look on the inside at my life so they could finally see what i saw. I also video taped inside my mouth etc etc (that was interesting I had never looked in there before even though i coukld feel the sores...its tricky thought u have to get into good light to take the video/pics).

I'll post after my allergist appointment next weds. Hope all is well. But thats my advice to all the autoimmune sufferes out there. We have the technology to prove out cases..USE IT!! If you have a doc that wont look at the pics...get a new doctor.

Tue, March 29, 2011 @ 11:00 PM

77. Lori wrote:

Hello Kyla! Really great ideas with the pics and recording!!! I'll have to make a post about that on my APD/AIPA facebook acct. Especially with having the dates on the pics! Makes keeping track of things, soooo much easier. I just had list after list but by the time I would get into see a specialist, which takes months, I would have no physical symptoms. I finally started scheduling appts. when I thought I would be flaring or went to ER so it was all documented by docs. When my anaphylaxis set in, most of my physical symptoms subsided so I couldn't really get any pics and any puffy face I would get, others wouldn't have really been able to tell the difference. I did have very old medical records that documents my massive hives and swelling that started at puberty but they've since been destroyed, very upset about that! I didn't know they could just destroy records without your consent or sending you copies first. Apparently they can! What if a child has open heart surgery as a baby, no problems until they're 25 and then no doctor will listen to them about their childhood heart surgery because their records have all been destroyed????

When you go see the allergist, make sure he researches how to do the testing for APD. That's sooooo great that you have other specialists backing you up for the diagnosis. Food allergies are good to know as well because you'll want to avoid as many triggers as possible or it all just compounds the progesterone allergy. Some things I can eat but only certain times of the month and there are other allergens that I have, like my own sweat, that I just can't avoid. Geez, sweat and progesterone, how ridiculous, lol!

Good luck at your appt and please do keep me up to date. Have a great day! Lori

Thu, March 31, 2011 @ 7:45 AM

78. Kyla wrote:

Ya I went back to find my files...one walk in destroys them after two years (i had a bout of purpura that the yfound during an infection). I had henoch purpura as a child which was recorded and then i had what they thought to be another bout when i was 19 ish that i went to a walk in for. Henoch purpura is an anaphylactic skin/blood vessel reaction to an infection. So it now all makes sense that i would be conituing along those same lines as an adult. I notice swelling when im ill too..so could it be that im allergic to virusews and hormones and meds? Hence why i could have such long reactions if they all ran into one and then another and then the other?

Period reactions causes swelling...which in the end results in dry mucous membranes...pick up an infections cause hte membranes are dry and inflammed... swell more from that...get put on meds that i have become alleric to and have a third reaction...which causes my skin to peel off...makes sense to me!! We couldn't figure out how i could go months sometimes with absolutly one complication after the other and now it may make all the sense in the world if in fact it is autoimmune progesterone or estrogen anaphylaxis. Unbelievable. But im rambling now...i could literally give examples all day long as im sure you could to.

Thu, March 31, 2011 @ 8:38 PM

79. Lori wrote:

Hello Kyla! Sorry it took a bit to get back. Had a bout of the flu last week and working on getting caught up on everything. Yes, everything makes complete sense. It's one vicious cycle after another. Your not allergic to viruses, I doubt, but definitely could be to your hormones, meds, other things. When your autoimmune, your immune system is in hyper mode all the time. The progesterone allergy has us in a constant state of inflammation, even if you can't visibly see the symptoms. Since our immune systems are so busy fighting with our hormones, it doesn't focus it's attention to fighting off infection. Then when we frequently get infection, it spins our immune system into complete over drive from an already hyped up state and really starts causing serious reactions. The infections themselves just increase flaring that already exists from the constant reactions to hormones, meds, etc. Then YES, we're put on meds for infection, that causes more and more problems and the cycle just continues. It was a constant ridiculous battle for me as well.

I had the flu for a few days last week and I'm still having some issues due to residual reactions just from my immune system freaking out more than normal. My skin itches and is bright red, secondary staph infection, mild facial swelling, burning muscles, stiff joints... but this time I was able to get over the infection on my own and I will recover fully in about another week when my immune system stops flaring. Actually this was my first flu/cold since last winter and that is completely unheard of for me. I used to suffer frequent nonstop infection and NEVER could get over the infections without meds that I was usually allergic too. I'm still not feeling the greatest and I thought I was going to die from pain when I had the flu but I did recover on my own. Our recovery time is a bit longer than those with a normal immune system and it can take up to 3 weeks for our histamine/immune system reactions to calm back down.

Your skin peeling off sounds like Steven-Johnson syndrome with is a severe allergic/anaphylactic reaction to meds... You react to something (progesterone possibly), get sick from the glitch in the immune system reacting even more, and then the meds send you into more severe reactions. They're all compounding one another, just like I used to do! This is exactly how you can go months with one complication after another!!!

Tue, April 5, 2011 @ 8:36 AM

80. Kyla wrote:

Ya, the skin peeling has been captured on camera already (its really mild and only lasts a few days that last time but this time it was to minocycline) but the immunoderm etc know all about it. After I had my general rash year ago with mild skin peeling, the rheumy said that she thought i had had a drug reaction to biaxin. I found out alter that both my parents are allergic to erythromycin which is in the same drug family. She gave me a bit of a clue as to how serious it was...she said that strep could have caused the reaction too if drugs didn't (meaning toxic shock strep doesn't cause peeling in anything else other than that) which also can cause skin peelage.

So, some sort of erythrodermic response to drugs. But erythroderma type responisis are supposed to be a sign and not an actual disease of something more...weve been searching for the "more" ever since. The more we dug the more we found lol To date Ive been diagnosed with atopic dermatitis, sebborhiec dermatitis, general dry skin, mild rosacea, acne, light sensitivity and last but not least, the most deadly...the idiopathic angioedema. Of course the deadliest one had to be diagnosed last lol lol We found everything BACKWARDS!!! So it was more like what skin disase DIDN'T cause the reaction LOL its a good thing i have a sense of humour. Counting down the minutes to my appointment tomorrow!!

Tue, April 5, 2011 @ 5:07 PM

81. Kyla wrote:

All went well. Allergy tests for food were negative. Allergist agrees that this COULD be hormone related and has suggested that I keep taking my pictures etc etc but didn't offer to do any testing on me. I highly doubt it would go positive anyways even if he did do it. Whatever reaction it is it isn't IgE mediated. My levels have been normal so that wouldnt show up on a skin prick test anyways would it? All i can do now is wait for the endo appointment and i have no idea when thats gonna be yet. The true test is all thats left and thats te lupron.

Hope you recover quickly Lori!! Your and mines story sounds so familiar its scary. Someone actually knows what im talking about. Not even my mothe who has lupus understands the muliple reaction thing.

Thu, April 7, 2011 @ 12:41 AM

82. Eschina wrote:

I have recently discovered on my own that I am having some type of sensitivity to estrogen. I had multiple cysts on my ovaries, but according to a naturapathic doctor, I my not have PCOD. I followed an antiestogenic diet and am fully relieved of my symptoms until I eat something with estrogen. My allergy symptoms disapeared too. That is how I discovered this estrogen allergy. But I am 31 and have no kids yet. So I don't know if I am inhibiting my chance of getting prenant, and what will become of me when I get pregnant. Do you think your natural treatment would help me. I just finished drinking a natural sparkling grape drink that gave me some much pain all over my body that I can't even talk or think. The pain is subsiding now. That is how serious it is. I don't have anaphylaxis, but the brain "fog" actually comes from my suppressed respiratory system from the allergy. I am vegan now, mainly because I love the diet and secondly, because of the hormone issue.

Sat, April 23, 2011 @ 9:08 PM

83. Diana wrote:

I was just wondering if anyone knew of someone who could treat this in the Orlando Florida area? Most of the allergists I've gone to have been unwilling to test me for this because they are not expierienced enough or have never heard of AIPA.

Wed, August 3, 2011 @ 3:08 PM

84. Lori wrote:

Hello Eschina! Wow, I never received a notice in my email that you had posted(been messed up for a while) So VERY Sorry I hadn't gotten back to you until now. That's really great that you've been able to control a majority of your symptoms thru diet and avoiding exposure!!! Very hard to do...I'm honestly not sure if my treatments would help because they are estrogen (estriol) treatments. What is a possibility is that they could help you build up a tolerance to other estrogens and block the ones that your reacting too. There are many different kinds of estrogens most are not bioidentical to your own bodies like the PM treatments. There is a possibility that they would help but also possible that they'd cause you to react just depends on what kinds of estrogens you're reacting too and if you could build up a tolerance. Usually with hormone allergies you have to use the opposite hormone of the one your reacting too. Progesterone allergy is typically treated with estrogen and estrogen allergy could possibly be treated with progesterone. Some people respond in an opposite manner where they have to use the hormone they are actually allergic to, to build up tolerance. All depends on the mechanism of action occurring within the immune system and how your body will react to treatment. Unfortunately, there is no way for me to predict how each individual will respond to each treatment. They're all experimental treatments and no further studies, testing, or research is being conducted to determine safer treatment options. Any treatment you try whether it be estrogen or progesterone will be trial and error, just like I had to do. H
ope this helps and have a great day!!!

Thu, August 4, 2011 @ 10:56 AM

85. Lori wrote:

Hello Diana! Wow, so happy I found your post, my email account has been giving me fits for a while and I haven't been getting notifs of new posts, grrrr. If for some reason I don't respond here on my forum within a few days, please do contact me from my home page or email me at loricody1@comcast.net (my other email). I really don't know of any docs in the Orlando area, wish I could help more with that.

VERY few docs are aware of Autoimmune Progesterone Anaphylaxis which why it and it's milder form are considered orphan diseases. They've stopped all education, research, testing... often leaving the patient feel orphaned. I'm sure that's exactly how your feeling right now, orphaned! We all feel that way!!!

What you could do is call around to all the allergist/immunologists, gynecologist, and even dermatologists in your area and request to speak to the docs. Find out if they've ever heard of Autoimmune Progesterone Anaphylaxis, actually, ask about Autoimmune Progesterone Dermatitis (not as rare) and see if they can test or b willing to research how to test. This would save you money and time for wasted appointments. If you can find a doc that is interested or seems interested, has heard of the autoimmune disease, then that's who you'll want to see.

The test is very simple, my own immunologist didn't know how to test but found out. It's just 2 intradermal injections of Depo Provera (very small amounts) that goes into the first few layers of skin. The first injection is diluted, the 2nd is full strength, and then there is a 3rd injection of histamine used as the control to see how your skin will react to the progesterone. Not all testing for the autoimmune disease shows positive due to a variety of reasons and then the AIPA/APD has to b diagnosed based on symptoms and timing of symptoms. My immuno doc used both my positive skin reaction at full strength, history of reactions, medical history with symptoms starting at puberty, and timing of reactions to diagnose me. Some even have a delayed reaction to the test, which I did as well. The reaction at the injection site could occur several hours later, up to 48hrs later. This was another positive reaction I had to the test. I had a very small hive at the non diluted Depo Provera injection site and then several hours later, I developed very large and painful lumps under the skin at the site. You couldn't see them but you could very plainly feel them, they hurt! They were about the size of a golf ball but never surfaced to skin level.

Unfortunately, most women never find a doc without traveling far and wide, they have to self diagnose...

Here is my new facebook acct link for AIPA/APD and some of my treatment users if you would like to join us:

http://www.facebook.com/home.php#!/profile.php?id=100001460848651

I do believe if you clicked on my name above, it will take you there too. I linked it but not sure if you'll go directly to my account.

I do hope this helps!

Thu, August 4, 2011 @ 11:26 AM

86. Lori wrote:

YEP, Diana and anyone else who wants to join me on my Facebook account devoted to Autoimmune Progesterone Dermatitis and Autoimmune Progesterone Anaphylaxis, Just click my underlined name right above this post. It takes you directly to my account so you can send me a friend request :)

Thu, August 4, 2011 @ 11:29 AM

87. Deb wrote:

Hi She-rah,
I was so excited to find your hub page! I share a lot of similar symptoms and troubles with doctors. I started searching autoimmune progesterone after seeing a story on Mystery Diagnosis. Three yrs ago I developed severe persistent asthma, then foods/additives would trigger my asthma, tied my hormone changes to my asthma flares, started having adverse reactions to medications (mainly all my asthma meds), hives, itchy skin and lesions, and most recently prior to my cycle I can't eat and breath (I believe that I may developing anaphylactic reactions). My reactions to my hormones are not the same a normal asthma reactions and the intesity has increased. My husband and I have become very concerned. I have kept a diary and other charts of symptoms and triggers for the past 3 yrs and now maybe it will come in hand. I am reviewing my notes, continuing research and trying to figure out what doctor to start with for help. I would like to get a proper diagnosis. I have also tried birth control pills to balance hormones and was unsuccessful. I am interested in trying your product once diagnosed. Thank you for your time to listen to my story. I would be greatful for any thoughts or comments.

Tue, August 9, 2011 @ 8:41 AM

88. Lori wrote:

Hello Debra! I'm so happy you found my hubpage too :) I do hope it's helped you figure out your big mystery. The symptoms of APD/AIPA can be so vast ranging from very mild skin irritations before your period to severe and life threatening. I agree, it does seem like you're symptoms are becoming anaphylactic in nature. That's how I was, unable to eat, breathing distress, multiple organ involvement, seizures. Pretty much every part of my body was affected to the point of having 17 medical specialists, 1 for every organ/system in my body. Unfortunately, out of all my medical specialists, not a one would believe or help me until I was referred to my immunologist. I started out with the Autoimmune Progesterone Dermatitis (only affecting my skin) and years later progressed to the Autoimmune Progesterone Anaphylaxis where the symptoms became almost fatal. Most of the cases I work with actually acquired the hormone allergy from taking birth control with synthetic progesterone. The cases continue to rise since docs prescribe BC like candy. Certain forms of BC can progress the condition as with pregnancy/after pregnancy as well. Just the repeated progesterone exposure...

As far as finding a doc, well, most of my cases have had to self diagnose because the autoimmune disease is an orphan disease. They've stopped all education, testing, research and most do not even know it exists. The reason I developed my own treatments. My treatments are bio identical estriol (estrogen) and in some case studies, estrogen does work, just like for me. BUT in some cases it doesn't, just depends on the mechanism of action occurring within the immune system. Sooooo, research, testing needs to be done for those that need other treatment options outside of the very few there are.

Here is a link to my new Facebook account for some of my AIPA/APD sufferers and treatment users:


My facebook profile

Please do feel free to send me a friend request if you like. Trying to get as many of us together as possible in hope that we can get studies opened up for the APD/AIPA.


Please do feel free to ask me anything!!!! Have a great day! Lori

Tue, August 9, 2011 @ 8:42 AM

89. Lori wrote:

Here is a list of Doctors/Clinics that will do the APD/AIPA testing. I will update this as I find new ones and more of us get positive diagnosis.

List of Doctors that are aware of Autoimmune Progesterone Dermatitis and Autoimmune Progesterone Anaphylaxis that will test and diagnose:

Dr. David Wright (Allergy, Immunology, Internal Medicine)
Central Illinois Allergy and Respiratory (AIR)
543 W Miller St Ste A
Springfield, IL
(217)522-5596

Dr. Andrey Leonov, MD
Allergy and Asthma Clinic
229 Hammes Avenue
Joliet, Il. 60435
Phone: 815-744-2300
***on a side note, if anyone traveling a distance to be tested, I would call and talk to him and let him know ahead of time. The progesterone is not something they have in stock at the clinic to test. Also, my sample was in sesame seed oil, so if you are allergic to nuts, ask for a different base. Hope this will help some people.


Dr Peter Lee (Ching Sang)
Allergy and Immunology
(250) 370-0318
Suite 250, 1641 Hillside Ave, Victoria, BC V8T5G1 Canada
***There are two Dr. Lee in Victoria who both practice Immunology , so make sure you have the correct one:)


Instituto Universitario USP Dexeus
C/ Sabino de Arana, 5-19
08028- Barcelona. España (Spain)


Dr. Katheryn Brown
Allergy Clinic of Tulsa, OK
(918) 307-1613

Mayo Clinic

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Call toll free from Mexico: 001-800-010-1390
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Thu, September 8, 2011 @ 8:14 AM

90. Ashton Morgan wrote:

Hi All,
I'm so glad I found this site. I'm hoping that I may find some answers to some of the issues I've been having with my skin for about the past year. I have been told by a dermatologist that I have Seborrheic Dermatitis on my face. It started as a small spot on my chin and in the corners of my nose, but has since spread to all around my mouth and nose. It's red, itchy at times, and usually very flaky. Sometimes it gets to be red, raw, and painful. I've been given a boat-load of creams, taken antibiotics, used shampoos, but nothing has cleared it up. It's actually getting progressively worse. And the crazy thing about it is, I had it on my scalp, but I was able to clear that. Just not my face.

I've also mentioned this face rash to my Rheumatologist, Family Practicioner, and OBGYN, but nobody really seems to think it's that significant. I truly believe my body is trying to tell me something is wrong on the inside.

I have Polycystic Ovary Syndrome (PCOS) so I take Birth Control Pills and Metformin to regulate that. One day last week, I googled both of those medications and Seborrheic Dermatitis and APD came up in the search. I also learned that hives are a symptom of APD. If I don't take Zyrtec everyday, I break out in hives. I've never understood this, as once upon a time, I only had to take Zyrtec in the Spring and Fall. Now, it's a regular part of my daily routine--it shouldn't be.

I see a new Dermatologist on Friday(the one I've been seeing for the last year has failed me horribly, and I'm tired of being experimented upon. I can do that at home on my own for much cheaper) and I plan to present the info I've found in my research of APD in hopes of maybe getting some testing done. My question is this--seeing as how this is supposedly so rare, what type of doctor should I be seeing? I have a history of other Autoimmune Disorders. I just saw my Rheumatologist. He's awesome, but I'm thinking he may not know about this because he hasn't mentioned it. I just saw my OBGYN as well. That was before I discovered APD, so I only mentioned to her the possibility that maybe my Birth Control Pills were causing my face rash. She said they normally don't do that, but obliged my request to change to a different pill which has different active ingredients. Now that I've done my research, I'm thinking that my facial rash doesn't cycle because without the BC pills, I don't have regular cycles, and then on the pill, I'm always exposed to extra Progesterone.

I'm just shaking my head right now because if I can't take the BC pills, how will I regulate my cycles? And I'm fearing that this is just the beginning...if I don't make some changes, this allergic reaction may get a lot worse.

Any insight or info anyone can provide would be GREAT!!!

Mon, September 12, 2011 @ 12:17 PM

91. Lori wrote:

Hello Ashton! So Sorry to hear about the problems you've been having! I completely understand your frustration and irritation with the reactions. Have you ever been to an allergist/immunologist? I would highly recommend seeing one and getting allergy testing done. Specifically, testing of histamine levels (IgE and other immunoglobin levels), RAST test, skin allergy testing, and intradermal testing for the progesterone allergy. You really should call a bunch of docs and find out if any of them have ever heard of APD/AIPA or at least willing to research and test. Birth Control is the biggest trigger/cause of most of my autoimmune progesterone dermatitis and anaphylactic cases. There could be any number of triggers with progesterone possibly being just one of them. Avoiding as many as possible is a huge plus to reducing reactions.

I used to get a face rash also around my mouth,nose area. It was tiny little blisters that itched, scaled over, looked like it would almost heal, and then would come back in larger patches. It was diagnosed as a bacterial infection and bacitracin cleared it up for me. Since we do have various autoimmune issues, we're prone to strange infections like this. Might not be what you have going on with the rash but that's what mine was.

Of course your doc would never admit that birth control CAN and DOES cause rashes, various other reactions, and autoimmune diseases! They'd lose so much money in the med industry if they did admit to it. Hormones play a VITAL role in how our immune systems function which is why autoimmune diseases are 80% higher in women than men. Not hard to figure out but the docs seem to remain oblivious to the truth or even health for that matter. They prefer to just keep pumping us full of drugs so we ignore or tolerate our symptoms and they very rarely try to find or treat the real source(s) of our problems.

Honestly not sure if you do have APD because of the PCOS and BC. No real particular cycle like you mentioned so would be hard to determine. Most major symptoms occur 10-14 days before your period and then begin subsiding when you start your period. BUT you're on Birth Control (BC) and I'm also not sure as to whether it's a progesterone based BC. If it is Progesterone based, then it would cause you to react all month long due to the constant exposure. Not sure if you're aware of the risks involved with Metformin either, it's a really nasty drug for some. Here is an update on it's warning from the FDA:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000974/

You'll have to copy and paste the link but thought you might find it interesting. I know that PCOS and Type 2 diabetes go hand in hand, again with hormones playing a vital role in how our bodies perform other functions...I have another client that has PCOS and she treats naturally with my Pueraria Mirifica treatments and Wild Yam Cream. I do believe she uses the 2 in combination according to how her monthly cycle "should be". Pueraria Mirifica treatments all month, except for during her period and Wild Yam treatments 14 days before her period. Stopping both treatments during her period. She's said that the Pueraria Mirifica is the best treatment she's ever tried and within 2 weeks, got rid of her facial hair, increased her energy, stopped tons of her symptoms. I really do wonder if there was a natural way to balance hormones your hormones, if the diabetes would correct itself since they're very obviously related?! I don't believe she has the diabetes with her PCOS so not sure of how treatment would effect that specific condition. Would certainly be better and safer than trying to treat the PCOS with synthetic hormones like BC that seem to only cause more problems.

Please feel free to click on my name right above this post and send me a friend request on my new facebook account if you would like to join me and others there. We share quite a bit of information, doc visits, updates, various treatments, experiences with my Pueraria Mirifica etc. Also, I'd really like to know when your symptoms are occurring the most if you can tell and what type of BC your on. I hope you're feeling well today and look forward to hearing back from you.

Tue, September 13, 2011 @ 7:32 AM

92. Lori wrote:

Ashton- So Sorry, copied the wrong link above on the metformin, it's a warning for the combo metformin scripts. Are you on a combination metformin treatment or just the metformin alone? The link might still be worth taking a look at. Here is a better one that might explain your hives, rashes, etc.

http://www.drugs.com/sfx/metformin-side-effects.html

Tue, September 13, 2011 @ 7:39 AM

93. Dr. Scott wrote:

This is some great information about this site. I agree and will let others know so that they can post as well. Love it, will be back and see what others have to say as well.

Tue, January 3, 2012 @ 1:07 PM

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