I'm Allergic to My Hormones!-Awareness for Progesterone Induced Anaphylaxis-Autoimmune Progesterone Anaphylaxis, Part 3

Due to the medical professions lack of knowledge on Progesterone Induced Anaphylaxis, the prescription drugs they were giving me throughout the years, caused more damage, conditions, and diseases. Although getting diagnosis was a huge milestone and relief, treatment was another problem. There are minimal treatments for Progesterone Induced Anaphylaxis and due to the liver disease, seizure disorder, and my increased severe reactions to prescription drugs, my treatment options were extremely limited. I was now reacting to most prescription drugs, a lot of foods and drinks, antihistamines began triggering seizures, and I could not tolerate any kind of synthetic hormone treatments. My Immunologist consulted my Gynecologist with his findings and suggested two treatment options.

The first was Lupron injections which would shut down my ovaries and kick me into menopause, stopping the production of Progesterone and Estrogen both. Not having estrogen at the age of 34 could cause other complications like Osteoporosis, severe depression, atrophy in female related areas, and I was warned that my mild seizure disorder could more than likely turn into Gran Mal Epileptic seizures. The other complication with this treatment is that it is a once a month injection and there was no guarantee that I would not have a severe allergic reaction because once injected, it couldn’t be removed. I can always just stop taking pills if I react but how would they stop an anaphylactic reaction to an injection that stayed in my system for an entire month.

The other option they offered was a Hysterectomy. Again, removing both Progesterone and Estrogen from my body and still facing the complications of removing Estrogen completely. I couldn’t have hormone replacement therapy after surgery because the purpose was to get rid of my hormones, and I have never been able to tolerate synthetic hormone treatments in the past. With both of these treatment options, I ran further risks with no guarantees. My doctors didn’t know what either of the treatments would do to me. They were purely experimental.

After having further tests done by Immunology, I was diagnosed as also being allergic to my own sweat (Cholinergic Urticaria). This made the treatments my doctors planned even more uncertain as to whether they would help or hinder. What do I do now, have all of my female organs and my sweat glands removed?! I was teetering on a double edged sword battling one vicious cycle after another.

My husband and I had discussed the treatment options that the doctors were willing to try and decided that if I could not find a way to control the autoimmune diseases on my own, then I would have to take the risk of going through with the hysterectomy. We would just have to hope and pray that I didn’t develop further medical problems. We both understood that the surgery could help or could make things worse and once they removed my uterus and ovaries, there was no turning back if things ended up worse. In the mean time, while I researched further and tried various natural treatment options, my Immunologist prescribed Epinephrine injections (Twinject Epipens), Albuterol inhalers, and Dicyclomine for anaphylaxis. One Epipen is kept with me at all times and the other is kept at home. These are a few of the medications that my body will still tolerate and I didn't have much other choice anyway. I would just have to deal with the side effects. This bought me some time to research further, experiment, and make an informed decision.

I told my Immunologist that I would find a way to get better on my own using natural methods from my research. He looked at me with a smirk and replied that there was no way anyone could cure the Autoimmune diseases that I had and I was facing very difficult decisions. I was determined to avoid anaphylactic shock or put myself in further harms way by going through with possibly more dangerous experimental treatments. Back to the drawing board and I went researching what little information there was on the web about my medical conditions. I experimented repeatedly with various natural treatments one after another with improvement in some areas and failures in others. Before I was diagnosed, I was only able to research each individual symptom and natural treatments. Getting proper testing and diagnosis has allowed me to look for treatments for the actual autoimmune diseases, not just the individual numerous symptoms I was suffering. I filtered through the bits of information that I could find on AIPA/APD and started developing a plan for natural treatment options.

Typical allergies are treated with antihistamines or allergy shots (immunotherapy) for more severe cases. Antihistamines do not work for Autoimmune Progesterone Anaphylaxis because they don’t actually remove histamine from the blood and they were causing me to have seizures. Allergy shots work by injecting the patient with an allergen, which is the substance a person is allergic to, thus allowing the body to build up a tolerance to the allergen. The injections hopefully stop allergic reactions and autoimmune responses.

I remembered a time in my life when I was completely healthy for a while. These few times were during pregnancy when both my Estrogen and Progesterone levels were skyrocketing to be able to carry a baby. My hives and swelling increased during the first few months of pregnancy and then it all just stopped. For the first time since childhood, I was healthy! Yes, I was healthy but I also began having complications in 2 of my pregnancies and went into labor at 4 months and 7 months. Low Progesterone levels and an allergy to Progesterone can cause the female body to spontaneously abort. Somehow my body wasn’t producing enough Progesterone to maintain pregnancy but was producing enough to build up a tolerance and stop my reactions, just like allergy shots do. I was put on IV’s and prescriptions to maintain pregnancy and keep my own body from miscarrying. Thank God, it worked! My children are nothing less than miracles! Not long after giving birth, I began to suffer again from my autoimmune disease. After researching how allergy shots worked by increasing tolerance and knowing that the increase in Estrogen and Progesterone during pregnancy worked in the same manner, I began thinking. Maybe, if I gradually raised my hormone levels like what occurs during pregnancy, my body would build up a tolerance and stop reacting. How do I do that?

Synthetic Progesterone injections (Depo Provera) used as birth control obviously wouldn’t work to build resistance since that’s what my Immunologist used to get my body to react and diagnose me. So I went and bought some Wild Yam Cream. It’s a cream the delivers a natural Progesterone precursor through the skin. It absorbs into the skin just like a nicotine or morphine patch.

Anything with a small enough molecular size that you apply to the skin goes into the body and blood stream. This method of treatment is called transdermal delivery. I applied a small amount of the cream and big mistake, within a few hours I had kicked myself right into anaphylaxis. Well, that certainly didn’t work out the way I had planned! Through my research I found out that increasing estrogen causes the ovaries to release more Progesterone. A slow increase of my OWN bodies Progesterone was maybe what I needed to build up a resistance and a natural source of Estrogen could quite possibly do just that.

When I read about other possible medical treatments, I read a few case studies of doctors who experimentally put women with Autoimmune Progesterone Dermatitis (milder form of the Progesterone allergy) on a synthetic estrogen. In some cases it worked just like when I was pregnant and in some it did not. Synthetic estrogen is an estrogen used to treat menopause symptoms or estrogen deficiency. It just so happens that treatment with an estrogen also increases the ovaries release of the bodies own natural Progesterone if your not going through menopause. The estrogen used in these cases were conjugated estrogens derived from the urine of pregnant female horses. They are responsible for many serious side effects and an increase in female related cancers like breast and cervical cancer. This form of estrogen was not a viable option for me either.

I’ve already had fibrocystic breast disease and fixed that problem naturally, so I didn’t really want to risk it coming back in the form of breast cancer. The prescribed estrogen patch is also a synthetic form and my body was not tolerating synthetic hormones of any kind. I have never been able to tolerate any kind of birth control containing synthetic hormones. The synthetic estrogens are very dangerous so I went looking for a more natural, beneficial form of estrogen. There are many sources of safe, natural estrogen called phytoestrogens that are derived from plants. Soy, Don Quai, red clover, and Fenugreek are just a few but there was one in particular that caught my eye...Continued in Part 4. (See below for Parts 1& 2 and my new website for awareness of AIPA/APD)

On a happier note, did I find a natural treatment for my "incurable" autoimmune disease? YES! As of today's date, I can honestly say that I am currently in remission and have been for about 11 months. I say remission instead of cured because I don't know if there is a possibility of relapsing. In my next Hub (Part 4), I will tell you how I've done it. Although I still suffer from stomach pain a few days a month, I'm no longer suffering weeks of horrible symptoms. I haven't had a major seizure in several months, no hives or swelling, no major infections, and I've had no anaphylactic reactions before my menstrual cycle. What I have had is some really great side effects from my treatments to add to my new lease on life. Many women may be very interested in what I have done to get my life back.

List of Doctors and Clinics that are aware of, test, and diagnose Autoimmune Progesterone Dermatitis / Autoimmune Progesterone Anaphylaxis:

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

Arizona
800-446-2279 (toll-free)
8 a.m. to 5 p.m. Mountain time, Monday through Friday

Florida
904-953-0853
8 a.m. to 5 p.m. Eastern time, Monday through Friday

Minnesota
507-538-3270
7 a.m. to 7 p.m. Central time, Monday through Thursday
7 a.m. to 6 p.m. Friday

International Appointment Offices

Mayo Clinic in Florida
904-953-7000
904-953-7329 (Fax)
Intl.mcj@mayo.edu
Office hours: 8 a.m. to 5 p.m. (Eastern time) Monday through Friday

Mayo Clinic in Minnesota
507-284-8884
507-538-7802 (Fax)
Intl.mcr@mayo.edu
Office hours: 7:30 a.m. to 5 p.m. (Central time) Monday through Friday

Mayo Clinic in Arizona
480-301-7101
480-301-9310 (Fax)
Intl.mcs@mayo.edu
Call toll free from Mexico: 001-800-010-1390
Office hours: 8 a.m. to 5 p.m. (Mountain time) Monday through Friday
Required Information

When arranging an appointment, please provide:

* the patient's name as it appears on the passport (last, first, middle)
* patient's gender
* patient's address
* patient's date of birth
* direct patient telephone number
* direct patient fax number
* patient's email address (if available)
* a brief explanation of the current medical problem (in English)
the preferred date of appointment
* whether the patient will need an interpreter, and if so, what language


Please check this list frequently, as I will update when I find new docs/ clinics!