From: jod@equator.com (John Setel O'Donnell)
Subject: Re: CFIDS and Lyme
Organization: Equator Technologies, Inc., Seattle, WA
Date: Wed, 2 Sep 1992 05:33:19 GMT

In article <16272@pitt.UUCP> geb@dsl.pitt.edu (gordon e. banks) writes:
>In article <1992Aug28.162338.10877@equator.com> jod@equator.com (John Setel O'Donnell) writes:
>>    
>>Lyme is a clinical diagnosis, and is essentially indistinguishable in
>>symptoms from CFIDS.  Many people (40%) never have the characteristic
>
>Lyme is a disease with a definitely identified cause (the borrelia
>spirochete).  It is true that it can produce many different
>symptoms, but it is not at all in the same category with CFS,
>for which no cause has yet been identified.  Lyme is in the
>differential diagnosis of patient presenting with fatigue.  So
>are other diseases, such as mono and MS.

Just what does this statement mean?  

It's been 10 years since the cause for Lyme was identified.  We still
have garbage serology, and garbage research based on it.

The only really reliable tests are stains of tissue biopsies, or
culturing the bug from fluids or tissues.  These are essentially never
done.  In 11/90 the CDC, FDA, and ASTPHLD held a conference on Lyme
disease testing.  The CDC tested 20 of the commercially available (and
used) kits for sensitivity and selectivity.  Only 7 of them made it to
"fair" or "good".  Then the results of labs using these kits were
compared.  Mean agreement between labs at the CDC, and the state
public health labs using these kits was fair or worse.

Furthermore, the tests are indirect, testing for antibodies which
often don't develop due to the low populations and long generation
time of the spirochete.  Many of those sickest never mount much
antibody response.

The lab tests are garbage; therefore, the diagnosis is a clinical diagnosis.

Now, as for symptom lists for Lyme and CFS, depending on who you
listen to they overlap 100% except for ECM and blown knees (or other
synovia with excess fluid).  There are no differential diagnostic
symptoms except these two.  And 40% of Lyme patients never develop
ECM; a higher proportion never get the fluid in the joints.  

So on what are you basing your differentiation of Lyme and CFIDS?

>
>>(some researchers speculate that much of MS is undiagnosed Lyme, and
>>that all of CFIDS is).
>>
>I've never seen any legitimate researcher speculate that much of MS
>is undiagnosed Lyme.  Only quacks who do no research, but only
>charge huge sums to patients with MS for giving them worthless
>lyme treatments.  Do you have anyone in particular in mind, or
>did you just toss this one out?

You know, Gordon, I find offensive your willingness to call quack
someone who you don't know, of whose work you're totally ignorant.  It
makes it hard for me to pay attention to other things you say, because
I don't know what's your bigotry and what's your wisdom.

And while we're talking about "legitimate researchers".  My long
personal experience is that the mainstream guys who publish in NEJM
have their heads firmly planted in the sand.  I've been treated by 3
of em.  Treated badly, in ways that contributed to my Lyme becoming
deep seated and currently incurable.  I see them ignoring fundamental
facts, searching for post-Lyme syndrome, CFIDS, autoimmune diseases,
rather than recognizing their treatment failures for what they are:
persistent infections.  This despite work in the European journals for
several years now reporting culturing Bb in patients treated with the
mainstream protocols.

Because of the absence of reliable tests, the determination of the
effectiveness of therapy winds up being totally subjective.
Intellectual honesty in such conditions can be hard, especially if
you're bent on making your research career on "being the guy who found
the cure".  Kicking people who aren't getting well out of your
studies, and then declaring victory, does not meet my test for
intellectual honesty.  Spending research money to determine whether 10
days of doxycycline is better than 14 days of amoxicillin, when both
regimens have been shown to be useless, does not meet my criteria for
good usage of severely limited public funds.  Yet it's happenning
among the guys you seem to revere.  As I said some postings ago, these
guys are a serious hazard to public health in this country.  And I'm
one of their victims.  Bitter and angry?  Yes.  Reality-based?  Yes.

Okay, to answer the question you posed above.  I've heard the leading
clinicians discuss this at Lyme conferences in recent years.  There's
a survey of the literature on this topic in "Lyme Disease 1991",
an excellent and topical review of many points of view available from 

Lyme Disease Education Project
P.O. Box 55412
Madison, WI 53705
$11.95.

There are three papers on the topic of Lyme and MS; by Ferris,
Marshall, and Katzel.  To summarize.  From 1909 until the mid-50's MS
was considered to be spirochetal in origin.  The 1970 Merck Manual
still advanced the spirochetal theory.  In the early 50's one paper by
a US researcher pursuing this theory was retracted due to
contamination of study materials.  This retraction somehow discredited
the entire 40 years of research; there's been essentially no work on
the topic since.  One of the papers cites some 43 references which I'm
not going to key in here.  I respectfully suggest you get the book and
pursue the references if you're interested.
-- 
- - -
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