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My Porphyria Story


     Where does one begin to tell their history of porphyria? For most porphyrics the story goes back to the time of their conception, some nine months before their birth. This was my case for at least my AIP type porphyria. My PCT has been acquired because of the toxic times in which we live.

     I was born in California in the rural agricultural Sacramento Valley. While growing up I was around all kinds of fertilizers, and pesticides. Also the main drugs at that time were Sulfas and Barbituates.

     When I began school I also began bouts of repeated pneumonia. I would always get the big mustard packs placed on my chest and a large pot of water was brought to a boil on a small one-burner portable unit. An isenglass mesh was placed around my bed to hold in the vapor.

     Then there were the drugs, and I would get sick and vomit endlessly. Then too I would cry with pain. I missed 41 days of school during first grade. Lucky for me my educational process was reinforced at home or I would still be in the first grade!

     I now fully believe that those horrible pneumonia bouts coupled with the drugs given me, were my earliest indicators of AIP. These drugs also caused a lot of itching which led me to scratch myself until I bled. Hindsight does tells us a lot of things.

     In junior high and high school I helped in the dairy barn. It was my job to spray the barn with DDT morning and night before the cows came. The mist would linger in the air and keep the flies from coming in.

     I wonder now how much of the DDT entered the pails and containers of milk. Nothing like DDT laced butter! And today my "body butter" is laced with that DDT which sometimes makes itself known during sweating or weight loss.

     My father also had a truck garden on 10 acres of farm land. Here we had a wonderful crop of boysenberry, blackberries, nectar berries and strawberries. We also had grapes of different varieties. I would often help with the spraying of fungicides and chemicals to keep mildew from forming on the berries and grapes. Today those chemicals are still in by body fat and show up in my blood during acute attacks.

     When I began teaching I had a classroom for special education students that was a storeroom for the biology and chemistry departments. I spent a lot of time in their lab while my students had "time out" for behavioral learning skills in this lab storeroom. I would often get nauseous when in the lab, but would think I was pregnant or maybe had the flu. It is strange as I look back now at all calendars and diaries how many times I would have the flu and how very "cyclic"  it was...always five days to one week before the normal women's thing would occur.

     The first pregnancies went well. The last five were hell and ended in spontaneous abortions or late-term miscarriages, depending on the terminology in my medical records. Drugs given during one hospitalization for a D & C ended with hallucinations and confusion. At the time my mother deemed it post-partum depression. I had lost the ability for three or four days to be able to concentrate, remember anything that happened five minutes before, or know what I had to do in the next five minutes.

     Now I know this all too well. It was nothing more than AIP.

     When I was first married my husband and I went with friends and I was going to be adult and have my first alcoholic drink. I ordered a vodka collins on the light side. The glass was 8 inches tall and 1 1/2 inches wide and went straight up. The shot glass of vodka was very scanty and yet, one half inch of this alcohol did me in. I went from fine, to laughing, to crying, to vomiting with ab pain so bad I thought I had been poisoned.

     The next time I tried a wine, a chablais. After all I was in California which is the U.S.leading grape growing state. I was again very sick and immediately had the flu for three days within hours of drinking a glass of wine. Now I know it was NOT the flu.

     Throughout the years when I was not pregnant, I was always with the flu once a month like clockwork, but a week to five days before "Mother Nature" would visit.

     The ab pains became bad in the 1970's and I would tell the doc so and he would just muse that it was probably a "woman's thing" and It would be with me until I was about 55. Great.

     Finally I went to a medical school residence's clinic and got checked out. They did find cancer. So that was the pain I thought and after surgery that would be that.

     Surgery went well. Then the chemo. I was told to expect some nausea, but the vincristine and cytoxin were unreal. Hallucinations, tremors, endless vomiting and sweating, bloating. I went through this for the entire chemo series and really thought that I was going insane.

     0nce done, I returned to normal except for getting the flu each month. The ab pain continued and so after hearing from the doc so many times that the pain was "just a touch of appendicitis" I had the appendix out The same with the gall bladder. Pathology reports indicate that there was nothing wrong with either of the organs. The surgery was unnecessary and costly. Also the anesthesia given made me sick and had side effects I will not share.

     A year later I was dieting quite strictly and the ab pain came and stayed with me until I started passing out at work. I was taken to the doctors office where he immediately gave me demerol and sent me to the hospital. 0nce there I started vomiting a lot and Vistaril and something else was administered and I had visions of a giant kaleidoscope with bright flashing colors and walls coming in on me. I was floating and going from hot to cold.

     The next day I had a GI series, stomach xray, a flouroscope, and the fun stuff of enemas on a gut that was all ready completely empty. They withheld food in order to do a test. Whether it was the radiological chemical given or the fasting I do not know. I again went through the same acute attack as two days earlier. I had four doctors probing and all said there was no intestinal blockage to be found, and no cause of the ab pain.

     The consulting neuro noticed reduced and absent tendon reflexes, but otherwise everything else was normal even though I had slight numbness. The neuro said it was possible that it was psychological. The other docs said it was " etiology unknown". My own doc who was not present, wrote up in his discharge summary: probable intestinal blockage.

     Back to square one. A multitude of tests, and nothing positive in the end because the discharge statement was liken to the admission statement. It did not matter what the radiologist and three on-calls had to say. "nothing there". And even the neuro's comment of possible "psychological origin" was overlooked.

     A few months later the numbness had progressed and was a daily thing. One day it was so bad I loss my gait and fell in a parking lot. I was taken to the ER by emergency personnel. Nothing could be found. The EEG came out o.k. There were only reduced tendon reflexes. I also had blurred vision but that was felt to be from the fall. After a an EEG, CT Scan, lab tests and ten hours in the ER I was sent home.

     That very night I had the flu again. Ab pain, vomiting, sweating, blurred vision increased, and a respiratory binding like a tourniquet tight around my chest. I remember clearly wishing I would die just them. The pain was too much and no way would I return to the ER. I called my regular doc and he said not to worry about it, it was just a women's thing and I might be imaging it all as well.

     I did go to the ER with crushing chest pain and left side numbness. Nothing was found and I was sent home. My old doc said that I was just imagining it.

     I then went away for a few months. While away got very ill, and remember the only thing I could do was to drink a very sugary sweet cola and pan dolce, a plain bread made where I was living. It took four long days of vomiting, ab pain and profused sweating and abdominal bloating before I became human again.

     I also learned that I was allergic to shellfish during this time away from home. A few years later I also learned that I could no longer have penicillin. Both times I had it, I became red spotted more than I ever did when I had the measles.

     I had to have dental work done and when I was given the injection to numb the jaw I remember the feeling of being on a merry-go-round and bright colors flashing and people coming into and going out of sight, sort of like the old Excedrin headache advertising. I was like a drunk leaving the dentist office and promptly passed out in the car. When I finally reached home I began vomiting and having another flu attack.

     Three days later I emerged once again just fine. I told my doc about it and he said that I was probably having problems with PMS.

     0nce again I had been strictly dieting. I never fast. But my caloric content was lower than normal probably about 25%. My meals were balanced and nutritious.

     I went to a friend house and we were celebrating her birthday and suddenly the ab pain was so bad I knew that I would pass out because of the severity.

     I went home and got family and went to the hospital. I was scoped, scanned, xrayed, irrigated, poked, bled, and you name it. There was nothing. Four days later my doc tells me that it is all in my head. In my discharge notes he writes that I had intestinal blockage. The consulting doctor the on-call, and E-R doctors all had cited no intestinal blockage, and that the etiology of the pain was unknown.

     I went to a bar-be-que and the host sprayed his yard with bug bomb and everyone had a can of "OFF". I immediately got nauseated and within two hours was vomiting and had to excuse myself. I went numb, blurry vision, and labored breathing. The next day I could not walk.

     Another time I substitute taught in the science department because of a teacher shortage in that field. I was pulled from English and ended up in biology. While my class was not into chemicals, the chemistry class was. I became very sick before the day was over. Sulfur caused my throat to burn, eyes water, skin itch and nausea, abdominal pain, and a sense of unsteadiness. I got another sub for the last hour and went home and was in bed for three days vomiting and drinking milkshakes which were the only thing I wanted along with 7-Up.

     My first husband died and a friend was concerned that I would not rest and called my doc for a small prescription of sedatives so that I would be rested before the funeral. The sedative or anti-anxiety pill made me hallucinate, profusely sweat, eyes to blur, and I started vomiting. Luckily bags of fresh hard rolls and dinner rolls had been brought by the house. I ate crescent rolls and jelly most of the night along with drinking orange juice. That stopped the pain and I felt o.k. to attend the funeral.

     I then got the Epstein-Barr and also pneumonia that spring. My son and I went to Hawaii I came home from there really sick. It was months before I started to feel better. I revarnished the wainscoating in my front porch and had a similar reaction to the varnish as I had to the sedative. Sick for four days without any help because I no longer would see my old doc. After I became engaged again and remarried I began going to doctors again.

      Finally after another bout of pneumonia I saw the on-call at the walk-in clinic and I found out that I could no longer ever have penicillin. The sulfa drugs were also taboo so I went without anything. Another month passed and I had pneumonia again and saw a lady doc. She gave me Cipro and it worked. I began having my annual exams again and really liked this doctor. She was thorough. At that time I was having hot flashes and this lady doc prescribed Bellergal.

     Wow, what a trip. Insomnia, restlessness, nausea, little tremors, flashing lights, and spacy feelings. I kept the Rx but rarely took it, and when I did the same time would happen again. The drug is from the ergot family and very Unsafe.

     I faced surgery and because of some community problems and being scared of surgery, my doctor gave me a sedative or anti-anxiety type medication. A few hours after taking it I was crying non-stop, walls crashing in on me, a crushing and suffocating feeling, and blurred vision.

     I had a series of bad pap smears cyrosurgeries, cone-ops, and finally ended up having to have a hysterectomy. As a followup I was given Premarin to keep me healthy after a hysterectomy. Well folks, I got sick from it repeatedy and eventually it gave me blood clots and a pulmonary emboli.

     Premarin, being partly estrogen, is also Unsafe for porphyrics and not good for many women who have blood clotting problems.

     During this time this lovely lady doc left her local practice and she referred me to a real gem. I was not happy to have to go to a male doctor again, but she offered me a choice, and I told her of my hesitancy, and she told me her choice and so I went.

     This wonderful doctor is thorough, caring, and ordered tests I had never had before. By this time I was having regularly trouble with numbness and leg gait and foot drag. We looked at the possibility of MS and eventually he referred me to a neuro for this. Nothing however showed on a CT Scan.

     He also immediately found that I was hypothyroid, and set out to correct this.

     My doc also found elevations in my liver panel. A very high level of alkaline phospatase,SGOT and other liver function tests. He consulted several times with a gastroenterologist familiar with the liver. I was not an alcoholic, nor did I have hepatitis, the two main causes of this liver elevation.

     For nine years we followed this liver elevation and the numbness and problems with gait. He tested me for all kinds of things, and one by one ruled out a lot of different things.

     I was of no help to him. Because of my previous old doc who kept telling me that I was imagining it all, I protected myself by withdrawing into a safe little shell and only letting out a little information at a time. Then my physician would pursue that one thing. In this way I did not bombard him with a mile long list of symptoms which would probably end me up in the psych ward as a hypo.

     Eventually I saw my primary care physician for the fine dedicated physician he is. A non-judgemental person, very exacting, persevering, unpretentious and most willing to learn with me. My physician is open to discussing everything with me so that I could understand myself, my body, my health or lack thereof.
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