Newsgroups: alt.med.cfs
Date:         Mon, 11 Jan 1993 10:00:30 PST
              <CFS-L@NIHLIST.BITNET>
From:         John Setel O'Donnell <jod@EQUATOR.COM>
Subject:      Re: sleep

.....It is
    amazing to me how so many of us have such similar, bizarre sleep patterns.
    John O'Donnell wrote some about sleep dysfunction being a symptom of Lyme
    disease...you may have spoken about this previously, and I don't know if
    others have reached their limit with the Lyme discussion, but I am
 interested
    in knowing whether you think those of us who had a sudden onset of our
 illness,
    and who had no awareness of getting a tic bite, and weren't in the woods or
    by the beach or in any other high risk area -- if you think it's quite
 possible
    that we have Lyme disease?  Do you think Lyme disease is the cause of most
    of these chronic fatigue-like illnesses?

Onset:  My Lyme, like many others, felt like a mild flu.  But it started
changing, leading to a deeper fatigue than I'd ever known, mood swings,
inability to concentrate or remember, and facial and hand numbness and
slight loss of coordination.  Also migrating joint pains, the thing
that most made me think I was going crazy.  There are many different kinds
of onset; in some cases the chronic/neurological symptoms don't begin
until years after the initial infection.  Stress, all kinds of things
are thought to be related.  I had plenty of stress in my life at the
time I was bitten.

Tick bite:  I had an insect bite, I didn't think it was a tick bite.
I got it visiting a relative in a nice suburban condo development;
no woods nearby, no beaches, etc.  I happenned to see that I had
the classic rash 9 days later, since the bite was just below my knee.
I had absolutely no thought that I'd been doing anything high risk.
There have been lots of studies of tick populations in the Northeast;
one study in Westchester found over 10 ticks per square yard of lawn
in an ordinary residential neighborhood.  So it's hard to say just
what's high risk.

Possibility: Yes, I do think it's possible.  I even think it's likely.
In one study I was told about (I don't have the reference handy)
researchers went to a CFIDS support group in NJ and _found_ Lyme in
roughly half the members.  _Finding_ Lyme in half the folks with Lyme
is an accomplishment.  Again, since the symptoms are
indistinguishable, whether you're told you have "Lyme" or "CFS"
depends mostly on what physician you go to.  (And CFS, unlike Lyme,
does not have a vocal set of physicians lambasting doctors who
diagnose it; Lyme does.  I have already sufficiently explored their
motivations on this group, so I'll spare you a repeat.)  The only
difference is: in the one case, there's a known cause, which in many
cases can be eliminated, or at least managed.  In the other, we're
reduced to trying to manage symptoms.

I think it's important to be aware of the possibility of Lyme; if you
have Lyme, your health can be dramatically improved with appropriate
treatment.  Unfortunately, it's difficult to determine if you have
it; tests are not definitive, and the only way to really know is to
try a course of antibiotics.

            Oh -- 1 last bit of info -- a friend of mine sent me a review of a
    book that others may be interested in.  It's called "Sick And Tired Of
 Feeling
    Sick And Tired: Living With Invisible Chronic Illness", by Paul Donoghue and
    Mary Siegel.  It sounds like a sane and supportive book -- they both have
    chronic illnesses, and write about the psychological effects of having an
    illness that people can't see and many don't believe.

Thanks for this post.  Another book in this vein that helped me
tremendously was "Living with Chronic Illness", by Cheryl Register.




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