Brief Lyme mention in Time magazine
A.J.
cloning. Note the sort of odd mention of Lyme (and CFS). It's a weird
statement because A) many people have a double diagnosis of CFS and
Fibro, and it is strange to state that fibromyalgia is not "all in the
head" and yet sort of imply that CFS is and B) many Lyme patients meet
the criteria for both CFS and fibromyalgia at some point in their
illness, and are diagnosed as having those illnesses. I was a
CFS/fibro patient before I was a Lyme patient. (Of course, we all know
that people who develop fibromyalgia as an "afteraffect" of Lyme
haven't actually been cured of the Lyme, they just have ignorant
doctors.) In my own town there is a group of rheumatologists who bill
themselves as "Lyme specialists" but in reality make their living from
diagnosing fibromyalgia to avoid diagnosing Lyme disease. Half the
Lyme patients I have met in my area met the criteria for fibromyalgia
and were diagnosed with it before they got a more accurate diagnosis
of Lyme.
The ironic thing is that, although my severe fatigue and the sleep
and neuro symptoms, etc. etc., have not budged much after being
treated with various types abx for more than a year, my fibromyalgia
muscle pain is mostly gone. It has been a slow, gradual process, but
now when I have pain it is usually not generalized head-to-toe pain
the way it used to be, but limited to my shoulders hurting, or foot
pain or something else along those lines. I used to wake up every day
just aching all over, and I really don't anymore. Abx sure haven't
cured me but maybe they have done more for me than I had realized.
I pray for the day everyone with CFS and fibromyalgia (and a number
of other conditions) can be accurately screened for Lyme, because my
bet is that most of them are infected with it and don't know it. My
experiences with a New York CFS specialist really brought me to this
belief. She told me most of her CFS and Fibro patients had seemed to
be infected with Lyme when she tested them with a LUAT/full-band
Western Blot combo. Then at a later appointment she totally backed off
that statement, admitted that she didn't want to discuss Lyme disease
anymore because she was afraid of having her license threatened a la
Burrascano, then told me I'd have to get a new doctor if I wanted to
pursue treatment for Lyme. (She also told me she had become skeptical
of the accuracy of the Lyme tests she was using because people with
autoimmune disorders such as rheumatoid arthritis and MS were often
showing up positive for Lyme with those tests too!! I know some of you
out there are laughing bitterly at that one.) So I got myself an LLMD
with help from this group. Meanwhile the Lyme disinformation campaign
continues, and many more people will suffer before it is over.
I notice this article stresses that the muscle pain that fibro
sufferers have is real and mentions the sleep disturbances but does
not even touch on the fact that many fibro patients have cognitive and
memory problems,neuro symptoms, difficulty coping with temperature
extremes, unexplained weight problems and any number of other symptoms
(not one of which isn't also found in Lyme patients). I don't think
there are very many fibro patients who have responded as well to an
exercise regimen as this author claims.
Whoa, that turned out to be a much longer intro than I intended to
write. Now I've exhausted myself.
Amy in CT
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HURTING ALL OVER
Patients suffering from fibromyalgia used to be told that it was all
in their head. Not anymore
Ian K. Smith, M.D. - Time, February 19, 2001
Fibromyalgia is a mysterious illness with a long name and a bad
reputation. For years, patients who went to their doctors complaining
of inexplicable pain, stiffness and fatigue were told that they were
depressed or stressed out and their symptoms were psychosomatic. More
recently, fibromyalgia has been linked to chronic fatigue syndrome and
the aftereffects of Lyme disease, which in some medical circles is
enough to give any ailment a bad name.
But the reputation is undeserved. Fibromyalgia is a real medical
syndrome that is being taken more seriously these days, thanks to a
study out of the University of Alabama that has found what may be the
underlying causes: a reduced blood flow to the parts of the brain that
process pain and twice the normal level of a brain chemical called
substance P, which helps nervous-system cells send pain messages to
the brain. Not only do patients now have scientific support to prove
they're not crazy, but doctors also have more reason to take their
complaints seriously.
The complaints are serious indeed, from swelling, tingling, numbness
and stiffness in the soft tissues (muscles, tendons, ligaments) to
achy, throbbing pain that is worse in the morning, intensifies again
at night and has been known to drive sufferers to suicide. Fatigue is
a common complaint (reported in as many as 9 out of 10 cases), caused
perhaps by disturbances in the deep-sleep phase the body needs to get
properly refreshed at night. Patients have told me that they feel so
heavy in the morning they can hardly get out of bed and that they
often find it difficult to concentrate on even minor tasks. For
reasons that are not known, women get fibromyalgia seven times as
often as men, but the ailment can strike anyone at any age.
Doctors are at a disadvantage in diagnosing fibromyalgia because many
of its symptoms are shared by other illnesses. Compounding the
problem is the fact that even with these recent findings, there are
still no definitive fibromyalgia markers. X-rays and blood tests can
be used only to rule out other illnesses.
To facilitate diagnosis, the American College of Rheumatology
established a procedure for examining 18 tender points on a patient's
body. If the muscles feel very sore when pressed in 11 of these 18
points, a tentative diagnosis of fibromyalgia can be made.
Although there is no known cure, there are treatments that work. In
fact, many patients have managed the disease successfully with a
combination of simple exercises and medication. Heat treatments,
massage and regular stretching have been of benefit, as have such
aerobic exercises as cycling and jogging. Though many patients say
these exercises only worsen the pain, working through the discomfort
can eventually bring relief.
Tricyclic antidepressants such as amitriptyline and cyclobenzaprine
are sometimes prescribed to improve sleep and relax muscles. Some
patients opt for temporary pain relief via local anesthetic or steroid
injections.
There is no single regimen that helps everyone. Just keep trying
until you find one that works for you. And don't let anyone tell you
it's all in your mind.
Dr. Ian (e-mail: ianme...@aol.com) is a correspondent for NBC's
Today show.