Type of Porphyria

Acute Intermittent Porphyria (AIP)

Greetings to all Sponsors of the “Porphyria Club:. I have just recently “joined” it. My name is Arunas Brizgys (“ah-roo-nus birz-geese”), male, nearly 55 years old, and I live in Kingwood, Texas. My “ethnicity” is Lithuanian/Baltic (i.e. east coast of the Baltic Sea, northern Europe).

My path to the “club” has been a tortuous one, as I’m sure it has been for all of you. I also have had hypertension since my mid-20s, which undoubtedly complicated things. My porphyria probably started manifesting itself about 3-4 years ago with intermittent bouts of severe gastritis. At the same time my cardiologist had me on what I now believe to be a too high a dosage of an anti-hypertensive alpha blocker. I was on a series of medications which gave me palpitations, weakness, malaise. I got to spend a night in the ER. So he changed the meds again. Within two weeks my toes started to tingle and I started getting episodes of weakness, like the flu. My cardiologist said it wasn’t the meds. So, he upped the dosage. The tingling in my toes became more intense as did the episodes of flu-like weakness, and now plus palpitations and muscle aches. So, over the 4th of July, 2003, I got to stay in the hospital for a day and a half. The doc said there was “nothing” apparently wrong with me and released me.

During the next few months, the episodes became more frequent and intense. Since my BP was still high, the cardio doc added another medication. Within 3 days I was cramping, nauseated, etc. He reduced that dosage, upped the other one! Needless to say things did not get any better. By now I was having blurred vision, light headedness, “fuzzy” brain, etc. so he changed the meds again. By now my blood test results were totally crazy: liver enzymes off the wall, sodium and potassium way down, BUN & creatinine out of whack. And now I was having a high pitched whine/hum in my head (not tinitus) and involuntary muscle spasms of the body, arms and legs, which would start just as I was falling asleep (needless to say, I didn’t get much sleep). Due to the rapid drip in my electrolytes, I had the “pleasure” of spending 3 days in ICU in January and a month later, in February, they ran all sorts of blood and urine tests. The cardio doc said it was probably a problem with ADH (anti-diuretic hormone) but those were normal. He told me to restrict fluid intake to 49 oz/day and released me. The symptoms continued.

(As an aside, I was also having “pins-and-needles” pains in my right shoulder and arm along with cramping. Three neurologists said there was really nothing wrong, maybe some minor carpal tunnel, although one said it wasn’t that, so he did an EEG and a brain MRI. “Nothing” wrong!)

By now I was totally frustrated. I haven’t worked in about three years with all these problems, but I kept hoping someone would figure this thing out! I “fired” my cardiologist and neurologist(s) and found an internist who listened. She ran a whole battery of tests and was still scratching her head. Fortunately, she reduced and/or changed a number of meds which reduced some of the problems, but the attacks/episodes kept on coming.

To cut a looooong story short….during the first week of November, 2004, I went to the Kingwood Northeast Minor Emergency Clinic for what I thought was strep throat. It turned out to be an oral yeast infection due to the antibiotics I was taking after a couple of root canals. After the yeast diagnosis the doctor asked about my skin color, kind of ruddy-reddish. He said that I didn’t appear to be Native-American. I told him it had been that way for years, and I thought it was sun damage. He looked at some of my previous records and noticed some out-of-normal things with my blood tests, asked a few questions about my current symptoms, and said, “I think you have Acute Intermittent Porphyria”. “What?” was my response. He copied some info out of a physician’s reference book and suggested I have my internist run some specific tests. Sure enough, porphyria.

I called that doctor after the test results and thanked him profusely. He said I “made” his year! He is a certified neurologist/ophthamologist but prefers to work in urgent care.

Now I am researching everything I can about AIP. As my brother-in-law said, I will know more about porphyria than 99.9% of the doctors. I also have the resources of several doctors in my extended family, none of whom unfortunately, live anywhere near Texas, but I do have a phone/fax/e-mail.

After the diagnosis I have switched to a high complex-carb, low-moderate protein (Mediterranean) diet. Additionally, I am taking glucose tabs and as of this writing I have gone 14 days without an “attack”, which is the longest length of time in a long time.

I would be glad to compare notes with other APF Sponsors.