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The data and information presented in this web site are presented in good faith and believed to be accurate. Any and all liability for the content or any omissions including any inaccuracies, errors, or misstatements in such data or information is expressly disclaimed. The web site is compiled for the sole purpose of informing community members of resources and information pertaining to Lyme Borreliosis Disease and its coinfections.
The Canadian Lyme Disease Foundation, Directors and members are not liable for any direct or indirect damages or any damages whatsoever resulting from loss of use, data or profits, whether in an action of contract, negligence or other tortious action arising out of or in connection with the use or performance of information available from this website.
Consult a qualified Lyme ( Borreliosis ) Disease literate doctor for medical advice if Lyme Disease is suspect.
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http://www.newstimes.com/cgi-bin/dbs.cgi?db=news&view_records=1&id=50098
Patients grapple with Lyme disease
By Robert Miller
THE NEWS-TIMES
2003-05-12
NEW MILFORD - In 2001, doctors told Tony Coffey he had a form of amyotrophic
lateral sclerosis - ALS, or Lou Gehrig's disease - and gave him a few months
to live.
His steps were faltering, his speech slurred. He couldn't swallow his own
saliva, let alone food. He had Bell's palsy, causing his facial muscles to
droop.
"I couldn't cough or laugh,'' said Coffey of Fredericks County, Penn. who
celebrated his 37th birthday Saturday at a symposium on Lyme disease at New
Milford High School. "And I had what I can only describe as a constant
pressure on my brain. I think my doctors thought I was faking it, or losing
my mind.''
Coffey was lucky. His search for medical help took him to Dr. Gregory Bach,
a Pennsylvania doctor who specializes in treating Lyme disease. Thanks to
intensive, long-term regime of antibiotics, Coffey has recovered his health.
He has a new son, named Gregory after Bach.
"I'm happy every day of my life,'' he said. "I'm just so grateful to be
liberated from the hell of Lyme disease.''
Bach, Coffey and several other doctors spoke to more than 200 people at the
symposium, which was organized by Karen Kopins Shaw of Litchfield. The
repeated message of the day was that Lyme disease manifests itself in many
ways, making its diagnosis a difficult thing.
"We have to think outside the box,'' said Bach, who plans to build a
research hospital in Pennsylvania dedicated to studying tick-borne diseases.
"ALS, multiple sclerosis - all are getting mixed up with Lyme disease.''
Echoing Bach's words. Dr. Steven Phillips of Ridgefield said his research
into Lyme has found links between infections with Borrelia burgdorferi -the
spirochetal bacteria that causes the disease - and autoimmune disease like
multiple sclerosis, lupus and rheumatoid arthritis.
"Doctors have called MS an autoimmune disease, and said people who get it
have a genetic predisposition for it,'' said Phillips. "But it's not just
genetic. For a long time, they've thought there was an infectious agent
involved.''
While studies have drawn a blank between MS and viruses and airborne
bacteria, Phillips said he and other researchers are now showing that many
MS patients have also been infected with the Lyme bacteria, finding
bacterial cysts in their spinal fluid.
Phillips' presentation also showed one reason why the bacteria is so hard to
detect once it infects a human. To protect itself, the corkscrew-shaped
bacteria can convert itself into a round microscopic cyst - "like it's
eating its own tail,'' Philips said. As a cyst, it can hide out in cells
where it's harder for antibiotics to reach. At a later date, it can turn
itself back into a spirochete.
"That's why the tests for Lyme are so often wrong,'' Phillips said. "They're
looking for the proteins associated with the spirochete when it's a cyst.''
Lyme disease is the country's leading tick-borne disease and Connecticut has
the highest per-capita rate of Lyme disease infection in the United States.
People get Lyme disease when they're bitten by a black-legged tick - a.k.a.
the deer tick - which carries Borrelia burgdorferi in its gut. If the tick
stays attached for a day or two, the bacteria moves from the tick into the
human; because the tick, in its nymphal stage, is as tiny as a poppy seed,
people don't always realize they been bitten.
Once bitten, most people - but not all - get an expanding rash around the
tick bite, accompanied by a fever, headache and stiff joints. If they take
antibiotics as soon as these symptoms show up, they're usually cured without
and further repercussions.
For those who don't get treated right away - and even for some who do - the
Lyme infection can show up months later with much more severe symptoms,
including painful and swollen joints, heart disease and neurological
problems.
Dr. Bernard Raxlen, a Greenwich psychiatrist who has treated the
psychological problems the disease can cause, said he's seen many patients
with "brain fog.'' - a general mental wooliness that prevents them from
carrying out tasks they could have knocked off it s a few minutes prior to
infection.
"I've seen patients with severe hyper-sensitivity,'' he said. "Lights bother
their eyes, noises bother their hearing. They have spatial disabilities -
they find themselves getting lost in their own home towns. They have
language problems - they start using the word 'thing' a lot instead of all
the nouns they've lost.''
"And I've seen spontaneous rage, depression, severe anxiety and panic
attacks - all from people who were doing very well a few weeks before.''
What's frustrating to doctors who treat Lyme patients is that there's not
one good laboratory tests that can identify the disease. Phillips said it's
hard to culture the bacteria taken from the body. Other blood tests - which
detect the presence of the disease by the infection-fighting antibodies it
produces - are widely recognized as unreliable.
"If you think you have Lyme disease, and your doctor takes one blood test
and says you don't without looking at your clinical symptoms, immediately
run to another doctors,'' Raxlen said.
A tick bite can cause other infections diseases - babesiosis, ehrlichiosis,
bartonella People can sometimes get infected with more than one disease from
a single bite.
The difficulties in diagnosing Lyme disease has opened a sometimes bitter
split in the medical community about it. Some doctors believe people should
get two months of antibiotics at most for the disease; others, including
those at the symposium, have kept their patients on antibiotics - both oral
and intravenous - for a year or longer.
The first camp also question many clinical diagnoses now being made,
claiming people with a host of problems - anything from undefined aches and
pains, to chronic fatigue, to fibromyalgia, to depression - have persuaded
themselves erroneously that they have Lyme and are being mistreated by
doctors who support that diagnosis. The Lyme disease-friendly doctors say,
in reply, the disease has a bewildering array of symptoms which should not
be ignored or dismissed.
Jerri-Lynn Wier, an attorney from Pennsylvania who has worked on behalf of
the Lyme community, said doctors have had their records seized and their
licenses threatened because they've treat Lyme patients aggressively with
antibiotics. Because of such incidents, she warned these doctors to
carefully abide by the new HIPAA regulations dealing with patient privacy.
"I'd urge you to follow them scrupulously, she said. "They'd be an easy way
for others to attack you.''
Dr. Amiram Katz, a Southport neurologist said Lyme-friendly doctors must
also fastidiously rule out any other illnesses before making a diagnosis of
Lyme.
"Our role is to ask first 'What else could this be,' '' he said. "We should
wake up every morning thinking of other diseases instead of Lyme disease. We
have to be careful. Misdiagnosis can run both ways and it's dangerous both
ways.''
Contact Robert Miller
at bmiller@newstimes.com
or at (203) 731-3345.
Division of Ottaway Newspapers,Inc.
333 Main St. Danbury, CT 06810 (203) 744-5100
copyright © 2001 by The News-Times
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