Newsgroups: alt.med.cfs
Date:         Wed, 23 Dec 1992 14:14:33 PST
              <CFS-L@NIHLIST.BITNET>
From:         John Setel O'Donnell <jod@EQUATOR.COM>
Subject:      Re: Lyme disease discussion
              Wed, 23 Dec 1992 11:50:10 EST

    Thank you for your very informative posting on various aspects of
    Lyme.  I really have just one simple(?) question though; Is there any
    way of finding out if Lyme caused my CFS- at this late stage (4 years
    later!, and I'm much better now) I mean, is it "Spirochete(s) that
    need to be detected or what? I had almost all of those symptoms at one
    time or another throughout this (crap!)  for lake of a better word,
    and at one point I DID have a rash that lasted for 6 or 8 weeks. But I
    think I had been sick for almost a year when THAT happened.  When I
    first got SICK I was living in the catskills and Lyme disease was
    rampant but I got sick in the winter and didn't suspect a tick as the
    villan!

The ticks are active year round in many areas; although late spring is
the classic time, new cases occur year round.  Probably most people
with Lyme have no memory of a tick bite, nor of being in a
par"tick"ularly dangerous place.

To answer your question above, there's really no substitute for seeing
a doctor who's working with a Lyme patient population.  I mentioned
the Lyme foundation (203-871-2900) as a source of physician referrals.
But here's some background.

The symptoms of CFS and Lyme are basically indistinguishable.  You can
find older Lyme publications that disagree with this, but lots of
newer work (I can provide a bibilography again if necessary) shows
that Lyme often causes all the neurological problems, fatigue, etc.
that we call CFS.

The only difference in the diagnosis is etiology, the causative agent.
If you call it Lyme, the causative agent is known, though not
necessarily curable; if you call it CFS/CFIDS/Fibromyalgia/ME... the
causative agent is presumed unknown.  Since there's LOTS more research
money these days for viruses and retroviruses than there is for
spirochetes and bacteria, most of the attention going to "CFS" is
directed away from Borrelia burgdorferi (the spirochete that causes
Lyme) and friends, including Borrelia hermsii (now turning up in
increasing frequency in Lyme and MS diagnosed patients).

At the moment, there's no objective means for determining whether you
do or don't have Lyme in your body.  Unfortunately, the test
technology is pretty dismal.  The only tests in wide use, antibody
assays, are poorly controlled and standardized; the FDA rated most of
them "acceptable to poor" at its first Lyme testing conference two
years ago.  Worse yet, the approach is an _indirect_ test, testing for
antibodies (your body's response to an invader) rather than for the
bug itself.  The body's production of antibodies is often limited or
nonexistent because of (a) treatment with antibiotics, (b) the very
slow growth rate of the spirochete, (c) the mimicry by the spirochete
of human antigens, (d) the spirochete "hiding" in locations in the
body not well served by the immune system.  No direct tests for the
presence of the spirochete are currently available, although two
promising technologies are expected eventually, PCR ("polymerase chain
reaction", which tests for spirochetal DNA) and the "gold stain test"
developed at Rocky Mountain Labs.  Eventually there may be useful
blood and/or urine tests, but they're all still at least a year away.

This leaves the only real option of a "challenge" course of
antibiotics to see whether your symptoms are affected.  If so, you can
be sure you've got an antibiotic-sensitive organism causing your
"CFS".  Suitable challenge courses are e.g. 1000mg amoxicillin tid for
21 days, possibly with probenecid 500mg tid.  If you have Lyme, an
initial worsening of symptoms may occur, due to the Jarisch-Herxheimer
reaction which I mentioned in an earlier post; this usually has
cleared by day 14, by which time you would expect to start noticing
some improvement.  If you don't have Lyme, the antibiotic should have
no effect, except possibly opening you to yeast infections and/or
(rare) diarrhea.  Different antibiotics are preferred by different
physicians; it's important, however, to try high dose for at least 21
days and to be aware of the Herx. reaction.  (I've heard PWC's say how
awful their reaction was to antibiotics taken for e.g. a sinus
infection.  I believe this is because they were getting a Herx.  and
had undiagnosed Lyme.)  Also, don't assume that 21 days is going to
cure you of late Lyme; the process, if successful, takes much longer.

Some studies of CFS support groups in New Jersey have found Lyme in a
surprising proportion of the people, so checking out the Lyme
possibility could be very worthwhile.

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