From: sbharris@ix.netcom.com(Steven B. Harris) Newsgroups: sci.med Subject: Re: Looking for Dr, researcher, or ? for help with... Date: 28 Apr 1998 08:16:36 GMT In <1998042802110700.WAA09017@ladder03.news.aol.com> nsmarch@aol- com (Nsmarch) writes: > My other hope is that in the mean time I can do something - >anything -- to help myself get better quicker. I am not a >hypochondriac -- I want desperately to get better and have this >stage of my life over with. When I was younger I was very >athletic, active, energetic, and in good shape. I would like to >regain as much of my old self as possible. Good for you. I doubt you're a hypochondriac also. In any case, your symptoms sound very much like chronic fatigue syn- drome, CFS (also known as CFIDS if the immune deficiency shoe "fits.") CFS is a real, but maddening disease, inasmuch as the cause and cure have not been found. >> I've lost faith in conventional medicine, and feel that many >>(most?) alternative sources of help aren't legitimate.<< Conventional medicine isn't a religion, and hopefully isn't something to lose "faith" in, in that way. We don't have a lot of the answers. As I noted in a previous message, we try to be honest about this. Some alternative sources of "help" will take your money, and be less honest. It's not clear if they are fooling themselves as much as you, but your money is gone anyway. >> I've received a lot of responses from women who have spent thousands and thousands of dollars on a variety of supposed treatments. No one has been very positive about the results they've received (except for some very short-term, temporary benefits during some treatments). As I mentioned at the onset of this message, my hope is that posting to newsgroups such as this might bring me into contact with some one who is involved in, or is interested in becoming involved in, non-traditional approaches to helping women affected by silicone. A solution to these problems would help not only myself, but thousands of other women who are in a similar circumstance. If you are such a person, please contact me at nsmarch@aol.com. Nadine<< COMMENT: I hope you get some helpful responses. As a representative of that medicine which you've lost faith in, however, let me suggest some other alternatives. Which you may not welcome, but here goes, anyway. It's going to sound as though I'm defending my turf at all costs, but I'm not that kind of guy. Conventional medicine has done some really stupid things, and hurt a lot of people-- mainly by not following the scientific method it was supposed to, but also because of just plain carelessness (thalidomide) or bad luck (phen/fen) or even fraud and lying (the artificial heart program in Utah 15 years ago). But you must be careful to blame medicine for stuff it has coming, and not tar it with stuff left over from every other problem in the world. Once upon a time, you know, they decided that you could erase wrinkles and sculpt faces, by directly injecting silicone into the tissues with a needle. Naked. And they did this for years, before problems began showing up. The stuff moved around, it fibrosed, it even got infected. But for all that time, the syndrome we think of as the silicone systemic syndrome, didn't appear. Where was it? This is, and was, the same stuff that leaks from the breast implants. You can even get it injected into your face in Mexico *today*, if you want it. Somehow, down there, it doesn't seem to do what it does up here in El Norte. Funny. The reality of some kind of systemic pathology from silicone oil leaking from implants is in serious doubt, and most pathologists who've studied the matter do not believe that the stuff causes any of what it's charged with, with the possible exception of local irritation and inflammation (and local cancer, if a device implant site is inflamed long enough--but that happens with any device made of anything-- silicone is nothing unique in that regard). The symptoms cannot be reproduced in animals, and indeed the symptoms are classic stress reaction type symptoms, with an overlay of something that sounds autoimmune, like the beginning or end of a bad virus syndrome. The problem is that the syndrome is basically identical with the symptoms claimed to be caused by chronic bacterial infections in root canals. Or chronic candidiasis (the Yeast Connection). Or with chronic poisonings from mercury amalgams, fluoride in the water, Aspartame, multiple chemical sensitivities, Agent Orange, Gulf War Syndrome (with or without the anti-nerve agent chemicals, or the secret mycoplasma), etc, etc. They're all identical. And all identical with chronic fatigue syndrome. There are millions of people out there with symptoms just like yours, who were active healthy people one month, and practically basket cases the next, but who didn't have breast implants. So they're out there looking for another reason. Epstein Barr virus was the big villain for awhile. Next week, something else. It's something real, but it's nothing that has been identified. The biggest mistake people make is to decide that they KNOW the cause, and are now on a holy crusade to stop aspartame from being added to Coke, or mercury to be used in dentistry, or something. These folks aren't helping. They're just creating a lot of class-action lawsuits that put companies like Dow-Corning in chapter 11 for a while, and ultimately cost a lot of people (elderly pensioners and their pension funds are the usual last Deep Pocket) a lot of money. The social effects of that kind of thing go so far they're hard to predict. But they are not good. I do medical research part of the time, and not long ago I needed a certain kind of suture for some experimental surgery. It's not made any more because the company that made it, simply quit. It was a tiny sideline to a giant thread-making and manufacturing giant. But it was MEDICAL item. Why expose yourself to the ultimate deep pockets risk, forever, for a tiny market? But nobody makes that kind of thread now. It was a sideline to them, but it was MY only source. My case involved only an experiment, and not on a human. But I know of another case in which an entire class of industrial chemicals, perfluorocarbons, have been put nearly off limits to medical research because the company that makes them (Dow again, as it happens) doesn't want to be exposed to liability of this kind, ever again. They'll NEVER market another medical chemical. Fine, you say. Except nobody makes this class of chemicals BUT Dow. It's a small market to them, nothing compared with refrigeration and industrial uses. But everything to the humans who need them. These chemicals are basically magic-- you can breath them because they are oxygen containing fluids, which are inert. Did you see the movie _The Deep_? With your lungs completely full of fluid that is twice as dense as water, you do not drown. I've seen this with animals on a ventilator, and it's a case of hardly believing your own eyes. The dense fluid opens up airways that could not be gotten to open otherwise, and will doubtless save countless lives. Premature children. Accident victims. Your family member with pneumonia. Right now, ONE little company is making one brominated version that has been held off the market for years because they didn't have enough money to test it. And giant Dow, with dozens of chemicals that work better, isn't going to get into it, or even sell to people they know are into it (when we need the stuff, we have to get it by a back-door route, as an electronics firm). That brominated fluorocarbon looks pretty funny on X-ray. It may save you from pneumonia today, but who knows what it will be accused of 20 years from now? What company wants to find out? What bunch of stockholders? In any case, what are YOU to do? I suggest an open mind. With so much at stake, I suggest you simply consider the possibility that you might be wrong. That you're simply a humdrum "ordinary" chronic fatigue syndrome victim. It's not romantic, like the Gulf War Syndrome. It's not the result of a decades of horrid plot, like mercury amalgam poisoning. Or a new plot, like aspartame. A giant chemical company probably didn't do it to you. CFS is huge, and real. But we just don't know the causes for some things. This is one. There is a payoff in broadening your outlook, which isn't some nebulous one of helping research. One payoff is that you won't be tempted to be as paranoid as some people you'll find in smaller support groups for CFS which is called Something Else. You won't have to worry that I'm getting paid by Dow to post here, as a few people reading this message are probably assuming (no doubt of this, actually). Seek out CFS support groups, and try CFS treatments. If you form your own local and smaller support group for CFS which thinks it's a support group for something else (Agent Z poisoning), you'll just expose yourselves to fewer possibly helpful things, and end up perhaps with some small and pathological "group culture" which will REALLY end up hurting you. Like the dental amalgam "poisoning" people who had all those filings removed. Be more eclectic. Your breast implants have already saved you from the filling removal, I presume. It's a shame your dental fillings haven't saved you from silicone paranoia. Let them! You had to have leaking implants out, but after that, let it be. Don't give up on medicine. It's looking all the time for what causes CFS. It's probably NOT a dozen, or two dozen things, because nature usually just isn't that complicated for one disease syndrome. Though CFS might well have more than one cause, it's probably not greatly more. And don't hesitate to try treatments which sound like they have nothing to do with the problem. Since we don't know what the problem is, precisely, we don't know enough to be able to winnow things down like that. That's part of the point about insulating yourself off in some silicone valley, where you can't see anybody else but other people with the same funny looking radiograms. In likelihood, that's all they are--- funny looking radiograms. The rest of it is just like a whole other bunch of people who are compadres you didn't know you had. Enough for now. You're probably furious anyway. I'll include a few abstracts, trying to make the point another way. There are studies suggesting there might be problems in the literature, but they are not convincing, and not confirmed by other workers. Nothing consistent is seen. Most studies looking for systemic problems with silicone, and all the most recent studies, are negative. If there's anything going on with silicone implants, it hasn't been proved, and it's not reproducible. Look elsewhere. Steve Harris, M.D. ABSTRACTS J Rheumatol 1998 Feb;25(2):254-260 A clinical study of the relationship between silicone breast implants and connective tissue disease. Edworthy SM, Martin L, Barr SG, Birdsell DC, Brant RF, Fritzler MJ Faculty of Medicine, The University of Calgary, McCaig Centre for Joint Injury and Arthritis Research, Alberta, Canada. [Medline record in process] OBJECTIVE: This study was a blinded, concurrent assessment of a historical cohort derived from a provincial registry (1978 to 1986) of breast implant recipients (cosmetic, not reconstructive) and controls (other cosmetic surgery) to test the hypothesis that connective tissue disease (CTD) is increased in breast implant recipients. METHODS: Women who underwent breast implant or other cosmetic surgery during the interval from 1978 to 1986 were contacted confidentially by Alberta Health and asked to particip- ate in the study. Those willing to participate completed an extensive questionnaire and supplied a blood sample, subsequent to which all surgical records were reviewed to confirm implant type(s) or cosmetic surgery(ies). All participants with any suggestion of rheumatic disease were assessed blindly by a rheumatologist for CTD. RESULTS: One thousand five hundred seventy-six breast implant recipients were recruited, including 1112 who had received silicone gel-filled implants (> 13,500 person yrs exposure). Seven hundred twenty-six controls were recruited. Prevalence rates adjusted for sex and age for rheumat- oid arthritis, systemic lupus erythematosus, scleroderma, and Sjogren's syndrome (the principal targeted conditions) were consistent with published reports for Caucasian women. While breast implant recipients self-reported significantly greater rates of symptoms than controls, post-surgical diagnoses of the principal targeted conditions did not indicate an increased incidence of typical or atypical CTD. CONCLUSION: The results of the study do not support the hypothesis that silicone gel-filled implants induce or promote CTD. ---------- Plast Reconstr Surg 1997 Apr;99(4):1054-1060 Lack of evidence of systemic inflammatory rheumatic disorders in symptomatic women with breast implants. Blackburn WD Jr, Grotting JC, Everson MP Research Service, Birmingham VA Medical Center, Ala, USA. Breast implants containing silicone have been used for approxima- tely 30 years for breast augmentation or reconstruction. In general, the implants have been well tolerated and reports have indicated a high degree of patient satisfaction. Nonetheless, there have been anecdotal reports of patients with musculoskeletal complaints that have been attributed to silicone breast implants. To investigate this further, we prospectively examined 70 women with silicone breast implants who had complain- ts that they or their referring physicians thought were related to their implants. On clinical examination, the majority of the patients had fibromyalgia, osteoarthritis, or soft-tissue rheumatism. One patient had rheumatoid arthritis, which predated her implants, and one had Sjogren's syndrome. Because many of our patients had myalgic symptoms, we further evaluated these patients by measuring circulating levels of soluble factors including interleukin-6, interleukin-8, tumor necrosis factor-alpha, soluble intercellular adhesion molecule-1, and soluble interleukin-2 receptor, which have been previously found to be elevated in patients with inflammatory diseases. We found that the levels of these molecules in women with silicone breast implants were not different from those seen in normal subjects and were significantly less than those seen when examining chronic inflammatory disorders such as rheumatoid arthritis or systemic lupus erythematosus. In summary, our clinical and laboratory evaluation of symptomatic breast implant patients argues against an association of silicone breast implants with a distinctive rheumatic disease or a systemic inflammatory disord- er. Given these findings and the clinical picture, it is our impression that most symptomatic women with silicone breast implants have well-delineated noninflammatory musculoskeletal syndromes. Moreover, these data fail to support the concept that their symptoms are due to a systemic inflammatory response related to their implants. ---------- J Biomater Sci Polym Ed 1995;7(2):115-121 Do silicone breast implants cause autoimmune rheumatic diseases? Smith HR Department of Medicine, Meridia Huron Hospital, Case Western Reserve University, Cleveland, OH 44112, USA. Current estimates are that up to a million women in the U.S. have breast implants with the predominant type being the silicone gel implant. Concerns have been raised regarding the safety of silicone gel breast implants with focus upon whether escaped gel might cause inflammatory and immune responses that subsequently lead to autoimmune rheumatic diseases such as progressive systemic sclerosis (scleroderma), systemic lupus erythematosus (SLE), Sjogren's syndrome or rheumatoid arthritis. A spectrum of illnesses ranging from local symptoms to systemic disease is seen in some patients with silicone breast implants, however, it remains to be determined whether such illnesses in these patients are coincidentally associated or are secondary to the implants. Our understanding of the relationship between the presence of autoimmune rheumatic diseases and silicone breast implants is limited. The available data indicate that silicone elicits a minimal immunological response as compared to conventional antigens. The histological, immunological and epidemiological experimental data derived from patients with silicone implants, as well as those from animal studies, are reviewed. These data do not convincingly demonstrate that there is a cause and effect relationship between silicone breast implants and autoimmune diseases. Further investigations are needed to clarify the interaction of silicone with the cellular and humoral immune systems, as well as with host and environmental factors. Ann Plast Surg 1993 Jul;31(1):1-6 Incidence of autoimmune disease in patients after breast reconst- ruction with silicone gel implants versus autogenous tissue: a preliminary report. Schusterman MA, Kroll SS, Reece GP, Miller MJ, Ainslie N, Halabi S, Balch CM Department of Reconstructive and Plastic Surgery, University of Texas M. D. Anderson Cancer Center, Houston 77030. OBJECTIVE: To test the hypothesis that there is a higher incide- nce of autoimmune disorders in patients who have undergone breast reconstruction with silicone gel implants rather than autogenous tissue. DESIGN: Prospective study. SETTING: Tertiary referral center dealing exclusively with cancer. PATIENTS: All female breast cancer patients who underwent breast reconstruction between January 1986 and March 1992. Patients were nonrandomly assigned to breast reconstruction with one of the following four methods: (1) silicone gel implant only, (2) latissimus dorsi flap with implant, (3) latissimus dorsi flap without implant, and (4) transverse rectus abdominis flap. The first two groups made up the implant cohort and the last two groups the autogenous tissue cohort. Selection of reconstructive method was made on clinical grounds and was based on both physician and patient preference. MAIN OUTCOME MEASURES: Documented diagnosis of autoimmune disorder by Board-certified rheumatologist. Results: Three hundred eight implants were used in 250 patients, and 408 reconstructions with tissue were performed on 353 patients. The two groups were similar in age and tumor stage. The two groups contributed 615.8 and 663.4 person-years of follow-up, respect- ively. One patient from each group (< 0.5%) had a documented occurrence of an autoimmune syndrome requiring therapy. Both cases were considered mild, and after initial low-dose steroid therapy, both patients are now off steroids. CONCLUSION: The incidence of autoimmune disease in mastectomy patients receiving silicone gel implants is not different than in patients who had reconstruction with autogenous tissue. From: sbharris@ix.netcom.com(Steven B. Harris) Newsgroups: alt.folklore.urban,sci.med Subject: Re: Breast implants are safe, or Dr. Dean Edell (of radio fame) and *two* urban legends Date: 26 Jul 1998 22:39:41 GMT In <35BB1C90.2E76E7F2@changeover.com> John R Henry <johnh@changeover.com> writes: >Cindy Kandolf wrote: > >> So why is silicon injected under the >> skin bad, while silicon leaking from a broken breast implant is >> harmless? > >Silicone injected under the skin *is* safe, assuming it is done properly >and medical grade silicone is used. The reason they stopped doing it was >because there is nothing to hold the liquid silicone in place, in the >desired shape. There were cases of local inflammation and fibrosis, also. But they were LOCAL, and there's a big difference between local and systemic problems with silicone. Silicone polymers in certain sizes can be horribly inflammatory, and (contrary to certain people's opinion) are not totally inert, like fluorocarbons. At my lab we use a Dow Corning product, a very low molecular weight low viscosity high purity silicone oil for dry ice bath cooling, and once, to have some idea of its toxicity, we injected a bit of it intraperitoneally into some mice. They died the next day of horrid peritonitis, clearly due to the oil (not our technique-- we do this with saline and drugs in saline all the time, and the mice are fine). I'm sure longer chain silicones are less irritating, but I have no problem with the idea that they can be broken down to things that are (or can be contaminated with lower molecular weight things that are). However, it's a LONG way from there to claims that the stuff gives people lupus. Steve Harris, M.D. |
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