Saturday, November 4, 2006

In 1971 I had been referred to a specialist who was doing the clinical trial for a cancer I had been dealing with. It involved taking my tumor, mixing it with killed tuberculin bacilli, and Freund's adjuvant. When I mention all this now to medical people their eyes glaze over with the "oh, that BCG stuff" look, and we go on from there. Except for my present oncologist who put two and two together and explained to me that was why I have autoimmune problems. It's a long term after-effect because it taught my body how to fight off the tumor cells, but also now fights my other cells too.

The drawback to having the cancer arrested (not cured) has been the autoimmune disorder. Often misdiagnosed as Lupus until they run the standard tests, then I get told it is "ANA negative" Lupus, and in more recent years, not Lupus at all. I am at the point where I do not care what the diagnosis is, as long as I get adequate treatment. Usually dosing of steroids until things calm down and I can get back to my usual reasonably normal self. As I have aged the episodes are more frequent and more lasting. I am now 61.

Some of the manifestations have been Alopecia Areata, Fevers without any understanding what's causing them, frequent lung infections/bronchitis, increase in allergies to mold, dust mites, smoke of all kinds, housecleaning products, and apparently some plants. I haven't bothered to get further testing on those.

The Lichen Planus of my skin, I can't even remember when it began. About 1979 or earlier are my furthest back memories. Photosensitivity seems to be related. Get me in the sun and a rash breaks out, but then later are the little pimple like sores that don't heal.

The Oral Lichen Planus in my mouth, was diagnosed in 1995. I might have had it earlier but it must not have been noticeable. Who looks that deeply into their mouth when nothing is going on? But, it has increased in the last ten years until it was diagnosed by a specialist as "severe erosive" Lichen Planus. Now, it is a constant battle between LP and Candida now that I am getting appropriate medicine for the LP (Clobetasol).

Because of the immune system being such a problem, I don't take flu shots because every time I do, I get the flu, and subsequent bronchitis or lung infection of some sort, as my doctor calls them. I have had pneumonia more than 14 times.

I have a list of drugs that bestow upon me, unfavorable reactions. Don't know if they are true "allergies" to the drugs. Just have been told by docs not to take them anymore. Penicillin is one. Tetracycline and Beta Blockers increase my lupus-like symptoms intensely.

Bendryl puts me to sleep, and leaves me druggy and grouchy all day, so I have Clarinex and Singulair. I use albuterol for the adult onset asthma and flonase for the sinuses.

I test so positive for tuberculosis now that my whole arm turns purple and swells up, though that is considered a reaction to the trial and no indication of having TB. Still no more TB testing allowed. I have learned that Freund's adjuvant is now forbidden to even use on lab animals because of the skin eruptions it causes. Hmmm.

Underneath all this I have the misfortune of having been exposed to the carcinogenic chemical dump, Love Canal, of Niagara Falls NY. I swam in the creek one mile down river for the first fourteen years of my life.

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