From: jod@equator.com (John Setel O'Donnell)
Subject: CFIDS and Lyme
Organization: Equator Technologies, Inc., Seattle, WA
Date: Fri, 28 Aug 1992 16:23:38 GMT

This is a repost of a message I posted to the CFIDS mailing list.

	..living with cfs..
    
    1.  while i started out with the flu, sore throat, swollen glands, spleen,
    liver, etc.  as long as i don't over do things these symptoms generally do
    not reappear.
    
    2.  prior tests in years past for lyme disease have been negative ... all
    i can say is that at least people with a lyme disease diagnosis get
    respect for living with a serious illness.
    
Lyme is a clinical diagnosis, and is essentially indistinguishable in
symptoms from CFIDS.  Many people (40%) never have the characteristic
rash; many more never have the joint-swelling which is a marker for Lyme.
Some have mostly musculoskeletal stuff, some mostly neurological stuff
(some researchers speculate that much of MS is undiagnosed Lyme, and
that all of CFIDS is).

The tests for Lyme disease are nearly worthless. 

- The spirochete replicates very slowly, thousands of times more slowly
  than, say, staph or strep.  It also changes part of its antigen coat
  with some regularity. This means that many people mount little or no
  antibody response.  

- Many people with a Lyme or CFIDS diagnosis have been on steroids or
  antibiotics, both of which can further limit antibody response.

- The most widely used tests are antibody titers.  Often the people sickest
  with Lyme (and hardest to cure) are the ones mounting the least effective
  antibody response, and are precisely those who test negative on the
  standard test.  "Standard" is a misnomer; different labs have wildly
  different "positive" thresholds, and use at least 3 different basic
  techniques.

- There are other, lesser-used direct tests for the presence of the bug.
  There's limited use of PCR (polymerase chain reaction) testing for 
  spirochetal DNA, and another test from 3M/Dianon which looks for
  spirochete antigens in urine.

- The problem with looking for the bug is that after you've had the disease
  more than a little while, there are very few circulating bugs.  They're
  mostly in tissues -- almost every part of the body.

One procedure that does seem more useful in picking up latent infection
is used by some clinicians.  The patient starts a course of antibiotics;
1000mg amoxicillin tid (yes 1K,tid), optionally with probenecid.  7
days later you do a urine test.  This way, bugs start dying and flushing
out of the system in quantities that the test can detect.

--

On the subject of antibiotics, many people diagnosed with CFIDS have
had a trial of antibiotics for possible Lyme, but had the experience of
getting worse with them, and interpreting that to mean that they 
don't have Lyme.  This is a misinterpretation. 

Most/all of the symptoms of Lyme are caused by the body's immune response
to the presence of the bug.  When you start taking antibiotics, bugs
start dying and flooding your system, usually 4-10 days after you start
taking them.  You feel much worse for 7-10 days, then you start feeling
substantially better.  This occurs with other infectious diseases, and
is known as the Herxheimer reaction; there's some ignorance of it 
around Lyme.

--
So check out my earlier post and call the Lyme foundation for a referral
to a Lyme-knowledgeable physician in your area to check it out again.
1-800-886-LYME or 203-871-2900.
--
-- 
- - -
John Setel O'Donnell                      jod@equator.com
Equator Technologies, Inc.                206-328-6544 voice/fax
Seattle, WA                               Read everything by Alice Miller.
Newsgroups: sci.med