Newsgroups: alt.med.cfs
Date:         Tue, 22 Dec 1992 10:46:10 PST
              <CFS-L@NIHLIST.BITNET>
From:         John Setel O'Donnell <jod@EQUATOR.COM>
Subject:      Re: Lyme disease discussion
              Tue, 22 Dec 1992 09:20:01 +0100

    Adding to my earlier posting, saying that I'm not so much against
    continuing the O'Donnell/Nye discussion: We as CFS sufferers are
    depending on the outcome of this *negotiation af the truth*...
    ...Could O'Donnell and Nye
    make clear that they, on a deeper level, really care for the
    sufferers? What is their real conviction.

I'll explain my views and personal connection to what I'm talking about.

I have had my life turned upside down by Lyme disease.  I was bitten
by an insect on May 20, 1988; 9 days later I had the classic "Lyme
rash" which about 50% of Lyme-infected patients get.  I sought
immediate treatment.  I was given treatment according to the protocols
then recommended by Steere.  My initial flu-like symptoms disappeared
while on the antibiotic, but relapsed about 10 days after therapy.
I went back for more treatment.  I was sick on and off that whole
summer, relapsing, fighting with my doctor, getting more antibiotics
and getting well again.

My symptoms started changing in new and very very frightening ways, to
include partial paralysis of my hands (my handwriting became almost
unreadable), numbness and tingling sensations in my hands (I still rub
my hands together regularly to check on my health) and face, aching in
different joints in my body -- "traveling" from one place to another,
pain in my ears, confusion and memory problems at work, and deeper
fatigue than I'd ever known.  I had unbelievable sleep disturbance;
waking up many times at night, never really being asleep, never really
being able to be fully awake during the day.  Also night sweats.  I
didn't know anything about Lyme, and didn't know that all these things
were common symptoms.  I feared I was going crazy from pressure at
work.

At the time, I was head of engineering at a computer manufacturing
company that I'd co-founded a few years earlier; while we were
bringing amazing new technology to the marketplace we were continuing
to have financial and internal management problems.  For the first
time I found myself unable to work the 60-80 hours per week I'd been
accustomed to, and basically unable to do my job.  In my journals at
the time, in addition to the record of my symptoms there's a pervasive
isolation and fear.  I was getting blamed by everyone around me for
suddenly "slacking off" in my work; people told me I was just making
up the symptoms.  I sort of believed them, and was desperate to know
how to fix it.  I did everything I was told, including spending lots
of time in psychotherapy and trying various psychoactive drugs
prescribed by a psychiatrist.  There was some improvement in the
desperation, but none in the other symptoms.

During this time my (first) doctor had referred me to one of the Lyme
guys at Yale.  He gave me a bigger dose of antibiotics and told me to
go away.  This time I thought I was cured; I was symptom-free for 3
months.  He told me, by the way, that none of the symptoms I'd
recorded were Lyme; that Lyme only causes arthralgias (joint pain) and
frank arthritis of the large joints.  I'd been talking about my
fingers and hands and feet and especially my neck.

In February of 1989 I was positive for the first time on a Lyme blood
test.  Physician #3 put me on a short course of on IV ceftriaxone.
The first time (10 days) it helped; but things didn't clear up
completely, and symptoms returned.  The second time (14 days) I
started getting worse -- nobody'd told me (or my physician) about the
Jarisch-Herxheimer reaction with Lyme.  (This is an initial worsening
of symptoms which can start 1-7 days from the beginning of treatment,
and last several days. It can be severe, and require _brief_ reduction
of antibiotics and/or _brief_ administration of prednisone to get
through it.  It's believed to result from dead spirochetes flooding
the body, being flushed out of the places they were hiding from the
immune system, causing a big jump in symptoms.  Essentially all the
symptoms of Lyme are thought to result from overactive/nonspecific
activity of the immune system in response to the presence of the
spirochete.  Did you know that the spirochete presents antigens so
formed that, when your body makes antibodies to them, those antibodies
also bind to and attack your own nerve cells?  This "cross-reactivity"
is one of the clinchers for some researchers in believing that much of
MS is undiagnosed Lyme.  Also, of course, much/most of
CFIDS/CFS/fibromyalgia.)

He refused to treat me any more; it was obvious to him I had post-Lyme
syndrome or just depression.  He sent me to a psychiatrist; eventually
I agreed to do this.  Prozac cleared up some depression things (yes, I
was depressed from being sick) but affected none of the symptoms; the
antipsychotic she put me on (whose name I've blocked) just made me
sleepy.  There was a particularly unpleasant thing about being told
"you're just imagining this".  Had Prozac been offered as an adjunct
to antibiotic therapy to help with the depression attending the
illness, it would have felt very different than it being offered as an
alternate, because I was cured and was just making it all up.

Several physicians later -- another leading Yale academician was in
there along the way as saying I needed psychiatric drugs, not
antibiotics -- I found a physician recommended by the Lyme foundation.
He's a family practitioner who stumbled into learning about Lyme
because he's in an endemic area; but he pays attention to and believes
his patients, and follows the clinical research.  I was still positive
on a direct-antigen test; there were still spirochetes around.  He
resumed antibiotic treatments and things got better, worse, better,
but the average is much better than it was.

In March of 1990, due in part to my absence and disability, the
company I'd cofounded failed, leaving me and 170 others out of work.
My worst nightmare came true: being unemployable, uninsurable, and
unemployed.  Fortunately my wife had *great* health coverage through
her job, which paid for my antibiotics, and allowed me to get well
without declaring bankruptcy. I work as a consultant now, so that I
can work full-time when I'm well and part-time when I'm not.  It's
working out well.

One thing Dr. Nye mentioned was the importance of treating
the fibromyalgia symptoms.  I agree with this.  One of the most
important advances in my health in the last two years was the
result of reading one of the articles in "Lyme Disease 1991",
cited at the end of this posting, which recommended working
up to doing 1 hour of aerobic exercise 3 times per week.  I've
done it & am doing it, and now live essentially aspirin-free (I
used to live on aspirin most of the time for the pain) and have
more energy & sleep better & concentrate better.

A few more comments and observations.

- One clinical retrospective study showed a 75% relapse rate on the
  standard treatment regimens in the literature.  This was published
  in abstract form at Fifth Int'l Conference; Joe Burrascano.

- Lyme poses serious problems for physicians because there's no test that's
  worth anything.  The antibody tests are nearly useless; due to the
  slow replication of the bacteria some people never develop much of an
  antibody response, esp. if treated early.  PCR hasn't panned out so far,
  and it's unavailable due to patent litigation.  The urine antigen tests
  have been disappointing. There's a test called the gold stain test
  developed at Rocky Mountain Labs (where the spirochete was originally
  identified) which some have hope for; it's not out yet due to
  licensing issues, I think.

- In the absence of a definitive serological test, deciding on whether a
  regimen cures the disease is very difficult.  This is especially true
  because of the widely varying nature of the symptoms.  People with
  Lyme can look depressed, or look like they have CFIDS, or look like
  they're malingerers, depending on the outlook of the physician.  It's
  my opinion that a lot of the research results are contaminated because
  the researchers ignored ongoing symptoms and proclaimed a cure when
  there was none.

- There are Lyme disease support groups up and down both coasts.  Most
  of the people in those groups have been to 6 or more doctors.  Most have
  suffered a real break in the physician-patient relationship; they feel
  betrayed, belittled, and ignored.  (I used to live in CT; I got my Lyme
  in eastern MA; it's endemic in both states.)

- Chronic Lyme exists.  Many of the early researchers denied this and
  invented "post-Lyme syndrome" to refer to symptoms which persisted after
  a course of antibiotics.

- Late-stage Lyme is currently incurable; that is, none of the clinicians are
  curing the folks who've had it bad or long. There are thousands of people
  out there who've had their lives destroyed.  However, it does seem to be
  manageable; folks (including myself) who were seriously disabled can
  be gotten up to functional.  However, this requires finding a clinician
  who's willing to take the Lyme seriously and treat it with a long-term
  course of antibiotics.  Most send you to a psychiatrist after the
  initial course doesn't work, and when the psychoactives have no effect on
  anything except some of the concomitant depression, they send you home
  and tell you to forget about it.


Here's a listing from one clinician of symptoms related to Lyme:

+ rash at bite site, other sites
+ unexplained fevers, chills, sweats
+ unexplained weight change
+ fatigue
- unexplained hair loss
+ swollen glands
+ sore throat
+ testicular/pelvic pain
- unexplained menstrual irregularity
+ sexual dysfunction
- upset stomach
- change in bowel function
+ shortness of breath, cough
+ chest pain, rib soreness
- heart palpitations, pulse skips, heart block
+ joint pain, swelling
+ muscle pain, cramps
+ twitching of the face or other muscles
+ headache
+ neck stiffness, creaks and cracks
+ stiffness of the joints or back
+ tingling, numbness, burning or stabbing sensations
+ Facial paralysis (Bell's palsy)
+ Vision: double, blurry, eye pain, increased floaters, photosensitivity
+ Ears: buzzing, ringing, ear pain
+ Dizziness, poor balance, increased motion sickness
+ Lightheadedness, wooziness, difficulty walking
- tremor
+ confusion, difficulty in thinking
+ difficulty with concentration or reading
+ decreased short-term memory
+ disorientation; getting lost, going to wrong place
- difficulty with speech
+ mood swings, irritability, depression
+ disturbed sleep -- too much, too little, early awakening

(+ means I've had or have this one)

By the way, there's a foundation running conferences, cosponsoring
research, doing physician referrals, and disseminating information.
Their "scientific packet" ($20) is a good investment.

  Lyme Borreliosis Foundation
  P.O. Box 462
  Tolland, CT 06084
  203-871-2900


Also, there's a good and accessible survey of the Lyme literature 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.

If you order, order soon; they say they're closing down shipments sometime
soon.
-------
Comments: Gated by NETNEWS@AUVM.AMERICAN.EDU