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From: B. Harris)
Subject: Re: Looking for Dr, researcher, or ? for help with...
Date: 28 Apr 1998 08:16:36 GMT

In <> 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

    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  Nadine<<


    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

    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.


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

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: B. Harris)
Newsgroups: alt.folklore.urban,
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 <> John R Henry
<> 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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