Summary-line: 23-Jan n, wilcox@cis.ohio-state. #[wilcox@cis.ohio-state.edu: ] Return-Path: Date: Wed, 23 Jan 91 17:56:41 pst From: cnorman (Cynthia Norman) To: cnorman, wilcox@cis.ohio-state.edu, luna@ccwf.cc.utexas.edu, anasaz!john@asuvax.eas.asu.edu, dwyer@nosc.mil, jgautier@ads.com, b-davis@cai.utah.edu, richter@triton.unm.edu, hxkpy@slacvm.slac.stanford.edu, botteron@bu-it.bu.edu, rollo@xylogics.com, proud@ihlpy.att.com, bill@picard.att.com, jsparkes@bnr.ca, island!green@uunet.uu.net, ann@snow-white.merit-tech.com, iex!neptune.iex.com!bert@uunet.uu.net, siang@biochem.umass.edu, smalley@pilot.njin.net, king@reasoning.com, mnetor!perle!kevin@cs.toronto.edu, afc@shibaya.lonestar.org, mark.ochsankehl@p2.f175.n120.z1.fidonet.org, pjz@ceres.physics.uiowa.edu, ardyk@tc.fluke.com, cyn@mdaali.cancer.utexas.edu, ogicse!sequent!roseal@ucsd.edu, paulxxxx@portia.stanford.edu, andrea@sdd.hp.com, mvac23!thomas@udel.edu, ames!claris!netcom!shelamer@ucsd.edu, nick@icad.com, marks@ocfmail.ocf.llnl.gov, schillin@scl.cwru.edu, 880039a@acadiau.ca, lbrueck@wpi.wpi.edu Subject: [wilcox@cis.ohio-state.edu: ] Reply-To: cnorman@ucsd.edu *** EOOH *** Return-Path: Date: Wed, 23 Jan 91 17:56:41 pst From: cnorman (Cynthia Norman) To: cnorman, wilcox@cis.ohio-state.edu, luna@ccwf.cc.utexas.edu, anasaz!john@asuvax.eas.asu.edu, dwyer@nosc.mil, jgautier@ads.com, b-davis@cai.utah.edu, richter@triton.unm.edu, hxkpy@slacvm.slac.stanford.edu, botteron@bu-it.bu.edu, rollo@xylogics.com, proud@ihlpy.att.com, bill@picard.att.com, jsparkes@bnr.ca, island!green@uunet.uu.net, ann@snow-white.merit-tech.com, iex!neptune.iex.com!bert@uunet.uu.net, siang@biochem.umass.edu, smalley@pilot.njin.net, king@reasoning.com, mnetor!perle!kevin@cs.toronto.edu, afc@shibaya.lonestar.org, mark.ochsankehl@p2.f175.n120.z1.fidonet.org, pjz@ceres.physics.uiowa.edu, ardyk@tc.fluke.com, cyn@mdaali.cancer.utexas.edu, ogicse!sequent!roseal@ucsd.edu, paulxxxx@portia.stanford.edu, andrea@sdd.hp.com, mvac23!thomas@udel.edu, ames!claris!netcom!shelamer@ucsd.edu, nick@icad.com, marks@ocfmail.ocf.llnl.gov, schillin@scl.cwru.edu, 880039a@acadiau.ca, lbrueck@wpi.wpi.edu Subject: [wilcox@cis.ohio-state.edu: ] Reply-To: cnorman@ucsd.edu Return-Path: Date: Wed, 23 Jan 91 17:17:00 -0500 From: Patricia P Wilcox To: cnorman@ucsd.edu >Date: Tue, 22 Jan 91 21:19:42 EST >From: Brinton Cooper [note from Cyndi: Brinton has chosen >Organization: BRL to be off this list and will not > get this message unless you send >Pat Wilcox writes: it to him directly] >> Furthermore, I am lately reading medical papers with a >> distinctly heightened suspicion of the details of their explanations. >> The point of the quote was that in at least one case, steroids >> have been reported to exacerbate an autoimmune disease. >Corticosteroids are fairly powerful immunosuppressants. However, for >reasons not fully understood, the initial dose of, say, prednisone very >often makes a case of myasthenia gravis much worse, occasionally causing >great respiratory difficulty. This is why such drugs must be initiated >only when the patient is hospitalized. This effect is temporary, >however, and the patient begins to improve, usually in a few days. My father appears to be dying of treatment with corticosteroids. The effect on him was not temporary, and he has not improved over a period of two and a half years. Furthermore, I have a very strong suspicion that treatment with corticosteroids accounts for a derangement in my body's lipid metabolism that began at the time of treatment, has persisted for four years, and shows no sign of disappearing. >In general, without proper background, scientific training, and clinical >experience, one must take great care in reading medical papers which >seem understandable. Ah, but with "proper" background, scientific training, and clinical experience, the medical profession is falling flat on its face trying to deal with chronic fatigue syndrome. My experience in debugging large complex database systems has taught me that when something strange is going on, the trick is to one by one examine your assumptions, and to formulate hypotheses to explain the error on the basis that one or more of your assumptions must be wrong. Certainly the person who wrote the program did not intend it to cause bizarre database errors. >She continues, >> There are a lot of things going on with people who say they have >> lupus, but this whole thing of calling this an "autoimmune" >> disease is suspicious since one of the things that happens in >> lupus is photosensitivity associated with perfumes, soaps, >> skin preparations, etc. -- which sounds like the increasingly >> familiar story of immune system attacking hapten bound to body >> tissue. >Is it "people" who say they have lupus, or does she mean a diagnosed >medical condition? Lupus is, I believe, fairly easy to diagnose far >beyond ambiguity through the presence of certain macrophages in the >blood. People who have been diagnosed with lupus should take great care >to follow the orders of a competent rheumatologist or other specialist. >Untreated or poorly treated lupus (actually systemic lupus >erythematosis) is a fatal disease. I can only tell you about people who *say* they have lupus, since I do not have access to their medical records. >Photosensitivity is a symptom of lupus. Yes, and several sources, including the Merck Manual and some of Mr. Dyer's postings on sci.med, discuss photosensitivity *in combina- tion with exposure to various chemicals* as a symptom of lupus. >I wouldn't jump to the conclusion that lupus represents a >misdiagnosis because of the sensitivity to certain chemicals or to >sunlight. Oh, no, I don't mean that it's a misdiagnosis. Just that lupus is one of a number of diseases in which autoimmune responses have been linked to environmental exposure to chemicals. And that this is a common cause (sometimes well-recognized, sometimes not) of symptoms associated with a bunch of other diseases, too. >I can tell you, as a "practicing myasthenic," that paying too much >attention to peripheral symptoms rather than aggressively treating the >core disease is a futile exercise. Once my myasthenia was brought under >control by aggressive but medically accepted therapies, many other >problems "mysteriously" disappeared. Of course, we've had this discussion before. Your problems that "mysteriously" disappeared, disappeared because they were caused by excessive enthusiasm on the part of your immune system, and they went away when you were placed on powerful immunosuppressant drugs. I claim that *you* are treating the symptoms and not the cause. It terrifies me that you work every day in an office where dry erase whiteboard markers are routinely in use, when I have observed dry erase markers to be a primary cause of autoimmune disease. Have you switched yet to Expo II (low-odor) markers (with alcohol instead of ketone solvents)? Do you want me to buy a set of them and mail them to you? Trouble is, in your current immunosuppressed state, you probably won't be able to tell the difference. I've made progress to the extent that our University Bookstore now stocks the Expo II markers, and people with whiteboards in our department are using them (because I scream to high heaven when they uncork the ketone-based markers). >> My hypothesis is that there is *one* kind of autoimmune >> disease -- immune system attacking hapten bound to body tissue -- >> with a dozen different names depending on which tissue is >> being attacked, and a lot of overlap because the doctor gives it >> the name of the disease he's most familiar with. Case in point -- I have seen reactions like mine to whiteboard markers diagnosed as multiple sclerosis, chronic fatigue syndrome, migraine, and hypoglycemia. These diagnoses are all consistent with what the marker solvent does to susceptible individuals. None of them are wrong. They just do not address the underlying cause. >I seriously doubt this, unless the doc is some sort of backwoods GP with >a 1926 MD degree from Alexandria (Egypt) who hasn't read a journal >since then. Competent specialists don't "guess" the disease based upon >their familiarity; they diagnose on the basis of a complex procedure >which computer scientists could write down as a tree structure. Sorry, this is not true in my experience. Certainly the doctor who determined that my father's immune system was attacking his blood clotting factor VIII two years ago, was able to diagnose the immediate problem in great detail. It is equally certain that he absolutely missed the significance of the fact that this happened immediately following a heavy exposure to insecticide, and never took into con- sideration the effect that corticosteroid treatment might have on such an individual, even though my father told the doctor that cortisone had affected him very badly in the past. And it is scandalous that *I* was the one who insisted that my father should have a glucose tolerance test for diabetes (and I know next to nothing about diabetes). Any doctor who took one look at him should have thought to test for diabetes. Even after my father requested a glucose tolerance test, all they did was a single blood glucose level determination, said "Yep, glucose is high, must be diabetes, here's the diet," and never did any sort of detailed investigation which would have turned up a huge complicated history of many many unusual immune reactions over the years. Also, you know, if you have all the signs and symptoms of several diseases, you follow those diagnostic trees and they say "you have this one", but they don't say "and this one, and this one, and this one." And the answer you get often depends on what you happen to tell the doctor, and which questions he happens to ask. Sure, they can come up with a (correct, as far as it goes) name for the disease. But (as somebody's signature on sci.med says) just because they have a name for it doesn't mean they know what it is. >_Brint --Pat