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» LymeNet Flash » Questions and Discussion » Medical Questions » Wash Post LETTERS Printed!!!!!!!!!!!!!!!!!!

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Author Topic: Wash Post LETTERS Printed!!!!!!!!!!!!!!!!!!
CaliforniaLyme
Frequent Contributor (5K+ posts)
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Lyme Disease
Tuesday, May 22, 2007; Page HE02

Lyme Disease
------------------------------------------------------------------------------

I disagree with Gary Wormser that "Lyme groups are so loud" ["Combat Zone," May 15]. Spouses, moms, dads, friends and pastors are voicing their frustrations more clearly with the way the medical community treats patients with Lyme disease. More people who have suffered, first through the pains of being misdiagnosed and secondly through the disease itself, are "coming out" to local newspapers and Internet sources, attempting to help others through the Lyme labyrinth.

More investigations should be done on tests that detect Lyme disease, since what is currently available is not reliable.

The Rev. Nancy Hollomon-Peede
Alexandria


Thank you for writing a very balanced and informative article. I certainly hope that our elected state and federal officials will read it carefully to become better informed on the key issues so as not to be misled -- and sometimes even embarrassed -- by those who advocate unsafe and unproven measures for the treatment of this disease.

Phillip J. Baker
Kensington


Two members of my family have chronic Lyme disease, and the long-term regimen of antibiotics keeps them functioning. Yet many Lyme disease support group members have been denied this treatment by their insurance companies, and when off the treatments, they soon relapse.



David Perlmutter
New Rochelle, N.Y.


The article portrays the Lyme debate as "physicians vs. Lyme advocacy groups," when in fact its basis is a professional, scientific dispute between members of the medical community. At its root is the lack of research on the organism, ineffective blood tests, and the fact that many front-line doctors have to treat Lyme based on their clinical judgment of what they see that works. This is very common in science, where one group of scientists will challenge the status quo based on their own observations, often starting off as "fringe," and later being accepted as mainstream. Case in point: The scientists who challenged the conventional wisdom that ulcers were caused by stress. They were widely ridiculed for proposing that the cause was a bacterium, H. pylori. Today, they share a Nobel Prize.

John P. Tippett
Fredericksburg

Lyme Disease

Regarding the two-test sequence for Lyme disease recommended by the Centers for Disease Control and Prevention:

A study by researchers at Johns Hopkins in 2005 shows that, for a pool of patients suspected of having active Lyme infection,the CDC two-test sequence showed positive in only 45 percent when done while the patients would have been in the acute (early) phase. When the same patients underwent the same tests a month to several months later, and the two sets of tests were combined, 77 percent obtained at least one positive test result. The CDC two-test sequence is inadequate for an illness that wreaks havoc when it is not caught early.


Karen Holmes
Campbell, Calif.


Ten years ago, my daughter was diagnosed with chronic Lyme disease and treated for many months with various antibiotics, some administered through a port in her arm. When she continued to suffer from severe joint pain, fatigue, headaches, rash and other symptoms, she visited several doctors, including a rheumatologist.

Lyme disease, rheumatoid arthritis, multiple sclerosis and sarcoidosis were eventually ruled out after a more specific series of tests, a rheumatology panel was administered, and she was diagnosed correctly with systemic lupus erythematosus (SLE) . Now that she is being treated for SLE, she is in remission except for occasional flares. SLE is difficult to diagnose, but should be given serious consideration when Lyme disease appears to be chronic.


Carolyn C. Miller
Alexandria

Legitimate debate exists as to whether persistent symptoms are due to persistent infection, a post-infectious process, or both.

In 2001, the New England Journal of Medicine published an article documenting persistent "severe impairment" after treatment among patients with well-documented Lyme disease. In 2003, Neurology published an article documenting that repeated antibiotic treatment results in clinically meaningful improvement three times more often than placebo. Acknowledgment of this uncertainty would diminish polarization and advance the interests of both scientists and patients.


Brian A. Fallon, MD
Director, Lyme and Tick-Borne Diseases Research Center
Columbia University

[ 22. May 2007, 07:35 PM: Message edited by: CaliforniaLyme ]

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
bettyg
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sarah, thanks for posting these.

would help us if you edited and got rid of the stuff newspaper put in there duplicated over & over where it's in there ONCE vs. many times.

glad to see one from brian fallon.

i just finished sending my letter! hope they will public more later! darn [Frown]

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Greatcod
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"Thank you for writing a very balanced and informative article. I certainly hope that our elected state and federal officials will read it carefully to become better informed on the key issues so as not to be misled -- and sometimes even embarrassed -- by those who advocate unsafe and unproven measures for the treatment of this disease.

Phillip J. Baker"

Baker is of course the NIH Lyme case officer, or whatever, the man whose butt sits where McSweegan's used to.
And without the guts to identify himself as such.
Of course the paper knows who he is; it is complicit in omitting crucial information on one of its letter writers. And that's the way the game is played.

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Vanilla
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The game that they play is getting really old fast.
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lou
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I think Baker did not give his title because he wants to pretend he is acting as a private citizen, not as a govt employee. Free speech rights, you know. The only difference between Baker and McSweegan is that the Mac was flamboyantly biased, whereas Baker is quietly biased. Not any real change in policy though when Baker got the job. I think bias must be a job qualification.
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monkeyshines
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I'm appalled to learn here that Baker is someone that has a vested interest. Doesn't the Post bear some burden to fact check these things?
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Greatcod
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The deal in medicine these days is disclosure.
This is the dude who decides how much grant money Fallon gets. Its hardball, guys.
My view is that they are out for the kill.

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lou
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Well, they are certainly killing us. Guess that means they are "winning."
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Greatcod
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I may be wrong, and I've been wrong many times before, but my gut tells me that Wormser and the IDSA and apparently now the NIH are totally determined to have their way.
I also think the LDA and it's state legislative
iniatives are a major factor, and the one they really don't know how to handle.
Go Pat!

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Cass A
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It's time to OUT the NIH guy to the newspaper and via the internet--not just to the lymies.

Best,

Cass A

Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
   

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