LD: Sufferers eager to be part of new study 
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 LD: Sufferers eager to be part of new study

As reported on Robynn's Lyme List:


Lyme Disease: Sufferers Eager To Be Part Of New Study


Day Staff Writer
Published on 3/10/2003

Ann Schwing of Haddam has so many symptoms from Lyme disease that she has
made up names for them. One of them is "Lyme fog," a sensation of having her
head filled with pressurized air.

"It's just indescribable," she said.

Schwing is one of the thousands of people who suffer from Lyme disease, the
mysterious and often misdiagnosed tick-borne disease that doctors and
researchers don't fully understand. And for her, as with many others, the
disease isn't going away and is causing memory loss, confusion and thinking

Frustrated and desperate, Schwing came to New London on Sunday to be
screened for a study that will explore chronic Lyme disease, and she hopes
the research it produces can provide some answers.

"I would love to be part of the study," Schwing said. "The symptoms are
horrible. Life is no fun."

Researchers from Columbia University are investigating treatments for
persistent Lyme disease and have been screening candidates in several
Northeastern states. On Sunday they came to New London, where they hoped to
find more people to get them to their goal of 45 participants.

The study, the first of its kind, will try to answer several questions and
will take several approaches. First, researchers want to know whether people
with persistent Lyme disease, who have been on intravenous antibiotics,
benefit from a second round of antibiotics.

Second, they will use state-of-the-art brain imaging technology to see if
patients with persistent Lyme disease have a problem in the nerve cells of
the brain, the {*filter*} vessels or both.

Third, they are looking to see whether there are any markers that will show
whether some people will benefit from therapy and others will not. Finally,
they are investigating whether brain abnormalities improve with time.

Only people who have been treated with intravenous antibiotics for three
weeks and have a well-documented history of Lyme disease, and are having
problems with memory, are eligible. But many people stopped by the New
London Senior Center on Sunday hoping to be part of the study even though
they don't meet the criteria.

"It's tough," said Adam Lessler, the Columbia University research assistant
who conducted the screening Sunday. "We have to turn people down."

The study, funded by the National Institutes of Health, gives people a
10-week course of intravenous antibiotics and will monitor their brain
functions in the following weeks and months.

Doctors are divided over the cause of persistent Lyme disease. Some think it
could be the result of a persisting infection, while other believe it's a
sign of a past infection that either caused residual damage or triggered a
self-perpetuating autoimmune response.

If the cause is persistent infection, then antibiotics would be the right
approach, but if the cause is residual damage, then cognitive therapy might
be the appropriate action. If the cause is autoimmune, then therapies to
address that would be the most helpful.

People involved in the study will have brain scans and testing at Columbia,
and afterward, will take the treatment at home with the help of nursing
aides. Some will be given a placebo, and they will be offered six weeks of
free antibiotic after the trial is done.

Like many Lyme victims, Schwing is frustrated by the lack of research on the
disease and people's unwillingness to take it seriously, even though, she
says, it has cost her her job as a social worker, ruined her life and taken
away her will to live.

On Sunday she came to New London armed with a battery of papers documenting
her history with the disease, which she says many doctors failed to diagnose
or refused to treat. Schwing even brought with her a tick she pulled off her
husband two days ago.

"Look," she said, pointing to the tiny bug and studying it with a magnifying
glass. "Can you believe it?"

Even this winter's bitter cold and heavy snowfalls haven't killed off the
bug that has plagued Schwing's life. She's hoping another round of
antibiotics will do the trick.

Sun, 28 Aug 2005 00:27:58 GMT
 [ 1 post ] 

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