Summary-line: 15-Jan n, wilcox@cis.ohio-state. #immune: CFIDS notes *** EOOH *** Return-Path: Date: Tue, 15 Jan 91 14:22:51 pst From: cnorman (Cynthia Norman) To: cnorman, wilcox@cis.ohio-state.edu, luna@ccwf.cc.utexas.edu, ames!chinet.chi.il.us!chaz@ucsd.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, abc@brl.mil, 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: immune: CFIDS notes Reply-To: cnorman@ucsd.edu Return-Path: Date: Tue, 15 Jan 91 16:51:44 -0500 From: Patricia P Wilcox Here is a plain text version somewhat awkwardly (sorry) derived from a letter I sent to Dr. Walter Gunn, CFIDS researcher at the Centers for Disease Control. By the way, I have never had any noticeable trouble with chlorine, but ozone seems to be bad news (see "Odds and Ends" below). Some of the people on the mailing list may not have seen my original long letter to the CFIDS association, and I've corrected a few flaws since I sent it to the rest of you, so let me know if you want a copy, anyone. -------------------------------------------------------------------- FROM: Patricia P. Wilcox The Coolspring Banjo Works 6617 Home Road Delaware, OH 43015 Phone (614)881-5032 E-Mail wilcox@cis.ohio-state.edu TO: Dr. Walter J. Gunn Mail Stop A-32 Centers for Disease Control Atlanta, GA 30333 DATE: January 3, 1990 Dear Dr. Gunn, ... Here is a large packet of information relating to the hypothesis that many cases of Chronic Fatigue Syndrome can be explained as the reaction of the immune system to small chemicals (haptens) which bind to body protein carriers to form immunogenic conjugates (as is well known to happen in the case of drug allergies). The last thing in the stack is a letter I sent to the CFIDS association last fall with a description of several organic chemicals that I know from personal experience to cause CFIDS-like symptoms. Further findings along those lines are reported in an attachment to today's letter. I won't repeat all of that here, but to summarize my position: It is certain that there exists a subset of the population who experience severe headache, asthma, nausea, and neurological problems when exposed to organic solvents at concentration levels far below those that bother most people. I am one of these sensitive people, and I have identified dozens more among family, acquaintances, and fellow workers. Exposure to sensitizing chemicals at low levels has become so pervasive in recent years that many of the people I talked to had not identified the source of their problems until it was suggested to them, whereupon a few simple experiments convinced them. It is also clear that the tendency to develop chemical sensitivity can be inherited, and that the actual sensitivity is triggered by high exposure or repeated low-level exposure to a sensitizing chemical. This sensitization is permanent, and may extend to a large family of cross reacting drugs and chemicals. The symptoms are those of Chronic Fatigue Immune Deficiency Syndrome, but they are also being diagnosed as sinus allergies, hypoglycemia, migraine, multiple sclerosis, lupus erythematosis, myasthenia gravis, Sj\"ogren's syndrome, fibromyositis, manic depressive illness, and probably other things. While it may not be the only cause of CFIDS, I believe that environmental exposure to sensitizing chemicals _can_ cause CFIDS, and may in fact be the most frequent cause, and that your research should include an investigation of the mechanism by which some of us become so highly sensitized. In the past, exposure to ketones and related chemicals has been largely limited to a few professions such as printers (particularly rotogravure printers), stringed instrument players (violin rosin), professional athletes (skin tougheners and traction enhancers), painters (paint solvents), and woodworkers (glues and wood finishes). In recent years, however, the wide use of Sanford Dry Erase (whiteboard) Markers in schools and offices has exposed much more of the population to organic solvents at levels that can trigger serious health problems in those of us with a predisposition toward sensitivity. Once sensitized, we face a host of health hazards including printing inks, perfumes, shoe glues, cellophane tape adhesives, food additives, and fabric dyes, some of which are almost impossible to avoid in everyday life. Conclusion. I hope that this information will lead you to do a few simple tests and ask some questions to convince yourself that Sanford Dry Erase Markers might in fact explain a large percentage of ``Yuppie Flu'' cases. I will be most happy to suggest easy ways you can test these ideas, and I offer myself as a ``canary in a coal mine'' to help isolate possible chemical causes for mysterious clusters of CFIDS cases. It would be interesting to determine the HLA A and B types for a good-sized sample of CFIDS patients, along with controls who share the same environment without developing CFIDS. If it would help, I can point you to several dozen people who exhibit CFIDS-like symptoms upon exposure to known organic solvents. Maybe you will come to agree with me that removing ketone-based marking pens from our schools and businesses is an important step towards preventing more people from getting sick and easing the lives of those of us who are already sick. In any case, we will have accomplished a major first step if we have managed to discover what's really causing the disease. Yours truly, Patricia P. Wilcox Appendix A---Additions to ``Letter to the CFIDS Association'' Although the list of offending chemicals is becoming rather long, the ones that cause the most intense migraine headache pain (and other CFIDS symptoms) are the ketones, toluene and benzoic acid, and whatever it is that's in Scotch box sealing tape. These can generally be avoided, once the problem is understood. But the ones that cause the most _misery_ are the chemicals that make it almost impossible for me to read any books, magazines, or newspapers printed after about 1988. Here is an update on things that I've discovered since the CFIDS conference, including information on what's gone wrong with the printing industry. The Genetic Connection. The Ohio State University hematology lab did some tests at my request (although they thought it was a bit strange ...) I do not have a G6PD enzyme deficiency (it still seems likely, however, that my Italian friend who reacts to whiteboard markers with severe anemia may be G6PD deficient). Both I and my highly chemically-sensitive daughter share the HLA A1/B8 allele that is often associated with ``auto-immune'' diseases. There is a family history of migraine headaches, high blood pressure and heart disease, and some diabetes among my grandparents' generation---and almost no cancer deaths. (Perhaps we should view CFIDS as a kind of continuous ongoing chemotherapy.) It is interesting that many chemicals on my list (e.g., ketones) are known to bind strongly to proteins, and one of them (toluidine blue, contraindicated for patients with G6PD deficience or myasthenia gravis) is a biological dye used to stain ``enzyme-deficient tissues.'' This all lends credence to the supposition that we are observing immune system reactions to a protein (carrier)/small chemical (hapten) conjugate. In the case of people with G6PD deficiency, anemia results when certain foreign substances bind to hemoglobin molecules and the hemoglobin is subsequently destroyed. In the case of a number of other diseases, there does not appear to be a medical consensus that an auto-allergic mechanism always causes the disease, but there are hints in the literature that exogenous chemicals can bind to myoglobin (muscle tissue), or to bone marrow, platelets, red blood cells, or white blood cells (causing blood diseases), or to myelin (nerve sheath), causing symptoms of multiple sclerosis, or to pancreatic tissue, causing eventual diabetic symptoms, or the walls of blood vessels, causing heart attacks or stroke. (See _Introduction to Clinical Allergy_, p.176, for a description of hematological manifestations.) The diagram of cell metabolism in the article on BHT-BHA intolerance illustrates a disturbance in lipolysis and glycolysis associated with an atypical response to beta adrenergic blocking drugs in these individuals---this may explain my low blood sugar and high cholesterol and LDL/HDL ratio (the cholesterol problems, by the way, occurred only after I was treated with corticosteroid injections for the ``sinus allergies'' that turned out to be an immune reaction to whiteboard marker solvents). The low beta-adrenergic reserve observed in BHT-BHA intolerant individuals may also explain why Sudafed (pseudoephedrine hydrochloride), which I think is a beta adrenergic stimulator, relieves many of my ``chronic fatigue'' symptoms. Violin Rosin. I had observed that certain violin rosins triggered my auto-immune symptoms. I have now determined that the rosin which makes me sick is dark rosin. A call to the manufacturer revealed that dark rosin is made by taking clear rosin and adding nigrosine, which the dictionary defines as ``one of several dark blue or black aniline dyes.'' I now know of three people who play old-time fiddle for square dances who have chronic fatigue syndrome, and they confirm that they react as I do to dark rosin. There is also a banjo player who shows some of the same symptoms just from standing near the fiddlers and breathing the rosin dust (and is also hypersensitive to toluene). Furthermore, a man who works for the company that manufactures dark rosin told me that he has the worst case of hypoglycemia that his doctor has ever seen. Many of the aniline dyes are known to be powerful carcinogens as well as (now) a probable cause of CFIDS. This all seems to indicate a very clear possibility of a connection between rosin dust and the high incidence of CFIDS and cancer observed in a North Carolina symphony orchestra. Printing Inks, etc. I have spent considerable time on the phone with Mr.~Ralph Miller in the Quality Control section of the U.S. Government Printing Office, and a couple of people at the National Association of Printing Ink Manufacturers, as well as talking to a local printing ink manufacturer and the medical people at Hercules Chemicals (supplier for printing ink resins). First conclusion: printing inks are complicated! However, there are some things we know for sure. For one thing, the coating for a coated paper contains formaldehyde, and will cause immune reactions even in the absence of anything bad in the ink. For another thing, BHT (one of the small molecules known to provoke allergic reactions) is used as an ``anti-skinning'' agent in some inks. For a third thing, anything printed on a rotogravure press contains enough toluene to cause migraine symptoms in sensitive individuals. Other one-of-a-kind problems: Hewlett-Packard just switched to a water-resistant ink for their DeskJet computer printer. The new ink contains 2-pyrrolidone and sulfonated azo dyes, and makes me very sick. Also, almost anything printed with blue ink gives me a headache---the local ink manufacturer says the culprit is most likely copper phthalocyanine (thalo blue). But _all_ recently-printed documents give me headaches now. And here's why. Starting about three years ago, the entire ink industry changed their ink formulas in an effort to "deodorize" printing operations. What they did was to change their ink oil to a high-boiling point (500 degrees or higher) petroleum distillate, treated with hydrogen, so we're talking about saturated aliphatic hydrocarbons with chain length ranging from about C11 to C20. I have no reason as yet to think that the new ink oil is itself toxic, but what seems to be happening is that the inks are never completely dry any more, and there is a tiny but continuous cloud of ink fumes escaping into the air. Now, someone sent me a clipping from the New York Times, and the ink made my eyes water and provoked an asthma attack. My friend at the Government Printing Office says that the New York Times ink is really simple---just carbon black mixed with ink oil. So I went looking for information on carbon black, and found a series of articles dated around 1980 describing problems with carcinogenic impurities in the carbon black used for xerographic toner. These impurities are several flavors of pyrenes (or nitropyrenes). Best guess is that a) they've found ways to remove the larger part of the pyrene impurities from xerographic toner, b) toner does not escape into the air much after being set by the heat of the copying machine, c) no one has bothered much about removing pyrenes from the carbon black used in printing ink, and d) appreciable quantities of the stuff are getting into the air because of the new never-drying ink oils. This should be easy to verify if you have access to a lab with sensitive gas chromatography equipment. The frightening thing about this is that (as with the aniline dye in dark violin rosin) if there is a high enough concentration of nitropyrene molecules in the air to cause CFIDS symptoms in chemically sensitive individuals, it's probably enough to cause cancer in the 75% of the population who do not have the HLA B8 gene which is theorized to destroy carcinogenic agents. It may be 20 years or more before we can tell for sure whether the general population runs a high risk of developing cancer >from reading the daily newspaper. Waiting for 20 years is not an acceptable way to answer that question. Odds and Ends. More things that have caused problems recently: - FD & C Blue #1 (in toothpaste and shampoo). - Saccharine (in toothpaste). - Benzoic acid---turns out that the ``benzoin'' in tincture of benzoin and Tuff-Skin is actually benzoic acid, a major component of gum benzoin, rather than the pure chemical also known as benzoin. At high pH, benzoic acid becomes one of the benzoates (e.g. sodium benzoate), often used as food preservatives. Benzoic acid is one stage in the metabolic breakdown of toluene, which may be the reason that toluene is so toxic. A closely related chemical is benzocaine (topical anesthetic), known to be a strong sensitizer which causes cross-sensitization to other drugs. - Ozone (generated in large amounts by the plasma screen of my daughter's portable computer) caused me to have an asthma attack. - Rubber tires give me headaches. I don't know why my friends had rubber tires in their dining room... - Mold toxins, probably aflatoxins, make me sick. This may be why I could never stand to eat peanut butter. - Insecticides. One lungfull of insecticide dust when I walked down the wrong aisle at the hardware store, and I was sick for a day. Impossible to tell exactly which insecticide caused the trouble. - Isopropyl alcohol. The lab technician didn't wait for the skin to dry after using an alcohol swab. Enough alcohol got under the skin to cause swelling and pain for several inches above and below the elbow, arthritic pains in the joint, and a big bruise. All this just for a blood test. - Telephones. Talking on one of our two telephones (a Radio Shack model) causes me to develop large red hives on the left side of my face and upper chest, along with shortness of breath. I opened the mouthpiece and observed that it contains a small black rubber flange and has a line of sealant around the edge that looks like silicone bathtub sealer.