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» LymeNet Flash » Questions and Discussion » Activism » PRWeb.com Newswire - spreading IDSA spew (OH NO!! The Worm's the Chair of review?!)

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Author Topic: PRWeb.com Newswire - spreading IDSA spew (OH NO!! The Worm's the Chair of review?!)
AliG
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PRWeb.com Newswire - Still spreading Wormser IDSA spew

Can't AG Blumenthal make them "shut up" with the hogwash & challenged information until the review process is completed?!!!!!! Can't we get an injunction, restraining order or something to make them stop this until it can be determined that their info IS FLAWED?!!!!

You have to CHECK OUT THIS link! Infectious Disease Experts Offer Advice to Prevent and Treat Lyme Disease

Download this press release as an Adobe PDF document.

It's tick season, but gardeners, hikers, and others enjoying the great outdoors shouldn't let concerns about Lyme disease keep them inside.

A few tips to keep ticks away, and some advice from infectious diseases doctors about Lyme disease, should help you enjoy the spring and summer weather, according to the Infectious Diseases Society of America (IDSA), a medical professional association representing the nation's foremost experts in Lyme and other infectious diseases.


Arlington, VA (PRWEB) May 2, 2008 -- It's tick season, but gardeners, hikers, and others enjoying the great outdoors shouldn't let concerns about Lyme disease keep them inside.

A few tips to keep ticks away, and some advice from infectious diseases doctors about Lyme disease, should help you enjoy the spring and summer weather, according to the Infectious Diseases Society of America (IDSA), a medical professional association representing the nation's foremost experts in Lyme and other infectious diseases.


"With tick season upon us, it's important to put Lyme disease into perspective," said Gary P. Wormser, MD, chairman of the IDSA expert panel on Lyme disease and chief, division of infectious diseases, department of medicine, New York Medical College, Valhalla.

"The vast majority, more than 95 percent, of people who do contract the disease are easily treated and cured with short-term antibiotic therapy."


Lyme disease (Borrelia burgdorferi) is a bacterial infection transmitted by a particular type of tick that typically feeds on small mammals, birds and deer but may also feed on cats, dogs and humans. Although the disease has been reported in nearly all states, most cases are concentrated in the Mid-Atlantic and northeast states.

A number of cases also have been reported in Wisconsin, Minnesota and northern California.


Most people who are infected have a circular, red rash surrounding the site of a tick bite, swelling in their joints and, sometimes, facial paralysis.

"The symptoms are sometimes alarming, but with proper diagnosis and treatment almost all will go away in a few weeks," Dr. Wormser said.


Preventing Lyme Disease

"The best method for managing Lyme disease is to avoid tick-infested areas. If exposure to ticks is unavoidable, measures should be taken to decrease the risk that ticks will attach to the skin," he said. Some simple steps to avoid the tick bites that cause Lyme disease include:

-- Wear protective, light-colored clothing that minimizes exposed skin and provides a contrast to ticks, making them more visible.

-- If you are outdoors and may have been exposed to ticks, check your entire body every day to locate and remove ticks.

-- Use tick and insect repellents and apply them to your exposed skin and clothing, following directions on product labels.


Treating Lyme Disease

Persons who remove attached ticks should be monitored closely for signs and symptoms of tick-borne diseases for up to 30 days.

Single-dose doxycycline therapy may be considered for deer tick bites when the tick has been on the person for at least 36 hours.


Most patients who develop Lyme disease are cured with a single course of 14-28 days of antibiotics, depending on the stage of their illness.

Occasionally a second course of treatment is necessary. More prolonged antibiotic therapy is not recommended and may be dangerous, according to Dr. Wormser.

"Nearly all people - more than 95 percent - who do get sick with Lyme disease and are treated with the recommended course of antibiotics get better and go on with their lives," said Dr. Wormser, lead author of IDSA's 2000 guidelines on Lyme disease.

He also is chair of the expert panel currently considering revisions to the guidelines, which are due out later this summer. ( [Eek!] !!!!)

The expert panel reviews the published scientific literature related to the topic before reaching consensus on guideline recommendations.


Chronic or Post-Lyme Disease Syndrome

A small number of patients report a variety of non-specific symptoms such as generalized pain, joint pain or fatigue following an episode of Lyme disease that has been treated appropriately.

Some physicians advocate treating these patients with repeated or prolonged courses of oral or intravenous (IV) antibiotics, but Dr. Wormser cautioned that "there are no convincing published data showing such treatment to be effective."

Furthermore, long-term antibiotic therapy may be dangerous and it also can lead to drug-resistant superbugs that are impossible to treat, he added.

"These patients with symptoms that persist for weeks, months or longer appear to be a heterogeneous* group, and they report non-specific symptoms that also are associated with a number of other medical diseases, both infectious and noninfectious," he said.
(*heterogenous=large number of variants &
DUH!!! Does the "NEW great imitator" ring a bell?)

Patients who continue to have symptoms that persist after appropriate antibiotic treatment for Lyme disease should talk to their physicians about whether the diagnosis was accurate or if they may have a different or new illness.
(Will this get them off the hook?
It could be worth a try to
BLAME THE PATIENT.??!!)

More information about Lyme disease--including a fact sheet for the public and practice guidelines for physicians--can be found on the IDSA website at www.idsociety.org.


IDSA is an organization of physicians, scientists and other health care professionals dedicated to promoting human health through excellence in infectious diseases research, education, prevention and patient care.

Major programs of IDSA include publication of two journals, The Journal of Infectious Diseases and Clinical Infectious Diseases, an Annual Meeting, awards and fellowships, public policy and advocacy, practice guidelines and other membership services.
(Let's make sure we start mentioning all the
GOOD things we try to do so if it comes down
to juries, they'll like us?)

The Society, which has 8,000 members, was founded in 1963 and is headquartered in Arlington, VA.

Media Contacts:
Gina Czark
Monica Charleston
312/558-1770


I SMELL SOMETHING VERY FISHY GOING ON HERE!!!!!!

Can we ALL call Gina & tell her what we think of this?

.......Can the PR firm save them?

[ 04. May 2008, 07:02 AM: Message edited by: AliG ]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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Keebler
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-

I can't believe it - the timing certainly is curious - the day AFTER the AG's report was issued.

a lot of people are going to be harmed by this lack of complete and accurate information. Sigh.

QUOTE: Most people who are infected have a circular, red rash surrounding the site of a tick bite, swelling in their joints and, sometimes, facial paralysis. " END QUOTE


That would sure send away many patients who should be assessed, thinking they had to have the rash or the joint swelling and pain right then and there. Actually, I've read that the swelling is not always present, even when lyme affects joints with pain.

-=

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bettyg
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quoting this also!!

[/B] He also is chair of the expert panel currently considering revisions to the guidelines, which are due out later this summer.
**********************************************


The expert panel reviews the published scientific literature related to the topic before reaching consensus on guideline recommendations [/b]....

revisions coming out later this summer! good grief! they'll not be to our ADVANTAGE that's for sure over their HOG WASH! [cussing]

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AliG
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BETTY!!!! [Eek!]

I COMPLETELY MISSED THAT!!!!

The WORM is the CHAIR?!!!!!!!

That's NOT good at all. [shake]

Thanks for pointing that out. I'm going back up to highlight that in the article.

[group hug]

[Frown]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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shazdancer
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Relax, relax, something's wrong with that press release. Wormser was the lead author on the 2006 guidelines panel, which were a revision of the 2000 guidelines. That is what is being said here -- but I have to admit, it looks pretty misleading the way it is written, in the light of a new panel being formed.

I also have a problem with the repeated claim to authority in a press release made right after that authority has been investigated, found wanting, and put up for review.

-- Shaz

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shazdancer
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If anyone is interested in comparing all the guidelines (IDSA 2000, IDSA 2006, American Academy of Neurology 2007, ILADS 2004, and Burrascano 2005) along with a few comments on them, they can all be accessed from

http://del.icio.us/lymebrarian/guidelines

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jamescase20
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Its certainly not time to celebrate, its not over yet.
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TerryK
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According to the agreement between the IDSA and Blumenthal, there are many reasons why Wormser cannot be on the committee.

http://www.ct.gov/ag/lib/ag/health/idsaagreement.pdf

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shazdancer
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Right, Terry, NONE of the panel of the last IDSA guidelines -- Wormser, Dattwyler, Shapiro, Halperin, Steere, Klempner, Krause, Bakken, Strle, Stanek, Bockenstedt, Fish, Dummler, Nadelman -- can be part of the review.

So that doesn't leave a lot of regulars from the IDSA camp -- Coyle, Aurwaerter, Krupp, for a few. Many independents, such as Edlow. And then there's the ILADS docs.... [Smile]

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pingpong
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JThe worm is best off chairing a dung beetle parade..

--------------------
pingpong

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adamm
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Wait--who gets to determine who's on the panel?
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sometimesdilly
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adamm-

the IDSA will decide who goes on the panel.

the settlement insisted on 4 checks to IDSA's power to do as they will with the panel.

1. as noted above, NONE of the previous guideline writers may be on the panel.

2. an odbudsman agreed upon by Blumenthal will oversee the selection of panel members; his job
will be to certify that no panel member under consideration has any conflict of interests.

3.the IDSA MUST consider all applicants interested in serving on the panel. they are not going to be able to turn away all those of the ILADS persuasion.

4. Blumenthal AND the 'budsman and IDSA must sign off on who is selected to present scientific arguments in the public discussion.

The IDSA has gotten away with its many distortions largely because they have never been forced to contend with the people or science that can prove them wrong.

Now they do. PR cannot change tht reality.

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jwf
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Blumenthal and IDSA agreed to appoint Dr. Howard A. Brody as the ombudsman. Dr. Brody is a recognized expert and author on medical ethics and conflicts of interest and the director of the Institute for Medical Humanities at the University of Texas Medical Branch. Brody authored the book, "Hooked: Ethics, the Medical Profession and the Pharmaceutical Industry."

http://www.ct.gov/ag/cwp/view.asp?Q=414284&A=2795

http://tinyurl.com/655uq8

Blue Skies.........John

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bettyg
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dilly and john, good summaries of everything we have been reading!


i had another thought about these guidelines coming out this summer!

that could mean the NEW COMMITTEE would like at present and come up with their OWN "NEW INTERPRETED" guidelines ... what do you think? betty [Smile]

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ldfighter
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quote:
Originally posted by shazdancer:
Right, Terry, NONE of the panel of the last IDSA guidelines -- Wormser, Dattwyler, Shapiro, Halperin, Steere, Klempner, Krause, Bakken, Strle, Stanek, Bockenstedt, Fish, Dummler, Nadelman -- can be part of the review.

So that doesn't leave a lot of regulars from the IDSA camp -- Coyle, Aurwaerter, Krupp, for a few. Many independents, such as Edlow. And then there's the ILADS docs.... [Smile]

Unfortunately none of the ILADS guidelines authors can be part of the panel either.

"Review panelists shall previously not have served on any Lyme disease guideline panel."

Also excludes IDSA 2000 members and AAN.

Link to full agreement at http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=066085

[ 05. May 2008, 10:22 PM: Message edited by: ldfighter ]

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Lymetoo
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What a bunch of garbage. What they just wrote will harm even more people. They're basically saying "Don't worry about a little tick."

Can you believe this?
"A number of cases also have been reported in Wisconsin, Minnesota and northern California."

Yeah, like thousands!!!
[Mad]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymen
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Medicine is not democracy. Often one person is right when 99 others are wrong. Voting actually wouldn't take you far in medicine.

Yet, the new guidelines will be established by voting because voting is a familiar tool for conflict resolutions to politicians, and they were involved in the case.

I don't think the voting thing is good for us.

IDSA has manipulated Blumenthal into the arrangement knowing, that this would give them upper hand in the game. Please note that any factual statement in 2006 Guidelines will be either voted in or voted out when 75% voting majority is achieved. Pretty much everything will be decided in recruitment. Who has more guys on their side in the committee wins.

Please note that this is not a creation of new sets of Guidelines as some of you may think. There will be only some changes here and there; possibly not that much.
Only very limited new evidence that were excluded before will enter the discussion so it is unlikely that the Guidelines will be expanded.

Even if we get two or three LLMDs in the committee they still likely may get overpowered by the IDSA guys if IDSA party stick together and vote like one.

Trust me, IDSA will make sure that they will stick together and vote like one. Each IDSA member has strings attached. He will be afraid that if he breaks the ranks his carrier might later suffer.
IDSA has powerful discipline inside; they are like army; no disobedience goes unpunished.

We have a very strong and ruthless opponents and need in preparation a lot of brain power.

No doubts that sociopaths from Public Communications Inc. will continue to be involved as IDSA need to defend their tarnished reputation.

I knowingly call the PR guys sociopaths because normal person wouldn't attack sick and poor people to defend reputation of corrupted members.
They do this for both: $$$ and for pleasure. "We love what we do." they say. Read it on their website. You have to be deprived of human feeling to do what they do and love it (actually this is a weakness - perhaps we can use it somehow). Normal people also sometimes do nasty things to others because this is their job or just to make a buck. But normal person would hate doing it, would hate themselves for doing it; never, never love it.

Yesterday we had a visit on this board of one of employees of Public Communications Inc. who come to mock us.
I am sure that it was well above the description of her job, a joke made on her spare time just for her pleasure. (this thread is now deleted)

"We love what we do." - Actually I believe you, Public Communications Inc.! That is why I know that you are sociopaths.

It is certain that they study this board daily looking for our weaknesses that they could use later in their campaign against us.

I am sure that IDSA will try to redo the Guidelines sooner rather than later (they have one year to do so).
The reason is that they don't want to pay high fees to Public Communications Inc. for a year.
So the resolution maybe just within the next 3-4 months. It is coming quickly. We have to be ready.
A delay may work for us. I guess if we delay them the more money they loose for protective PR and the longer we can call current Guidelines "questionable" or "tainted".

We cannot be sure about how much we can gain in the new Guidelines. Perhaps not that much.

Our surprises should never be disclosed on this board in order to give no preparation time to the enemy.

THERE WILL BE SURPRISES - SO IDSA, PAY FOR YOUR PROTECTION ALL THE TIME. YOU NEVER KNOW WHEN YOU MIGHT NEED IT.

[ 06. May 2008, 11:32 AM: Message edited by: Lymen ]

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hcconn22
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Could someone list all the ILADS docs who served on the panel developing the IDSA guidelines, so we know who will not be able to participate?

--------------------
Positive 10 bands WB IGG & IGM
+ Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest

And still positive ELISA and WB two years after IV treatment
http://www.lymefriends.org/profile/blake

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AliG
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Authors of the IDSA guidelines and authors of the AAN guidelines


(courtesy of Tracy9 [Smile] )

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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hcconn22
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Never mind, answered my own question. Are we SURE none of these doctors can participate? This will be a real tragedy.

Daniel Cameron
Andrea Gaito
Nick Harris
Gregory Bach
Sabra Bellovin
Kenneth Bock
Steven Bock
Joseph Burrascano
Constance Dickey
Richard Horowitz
Steven Phillips
Laurence Meer-Scherrer
Bernard Raxlen
Virginia Sherr
Harold Smith
Pat Smith President, Lyme Disease Association
Raphael Stricker

--------------------
Positive 10 bands WB IGG & IGM
+ Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest

And still positive ELISA and WB two years after IV treatment
http://www.lymefriends.org/profile/blake

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hcconn22
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I don't see where it says anyone who has been on a panel can't participate, only those who were on the IDSA panel:


THE GUIDELINE REVIEW PROCESS

Under its agreement with the Attorney General's Office, the IDSA will create a review panel of eight to 12 members, none of whom served on the 2006 IDSA guideline panel. The IDSA must conduct an open application process and consider all applicants.

The agreement calls for the ombudsman selected by Blumenthal's office and the IDSA to ensure that the review panel and its chairperson are free of conflicts of interest.

Blumenthal and IDSA agreed to appoint Dr. Howard A. Brody as the ombudsman. Dr. Brody is a recognized expert and author on medical ethics and conflicts of interest and the director of the Institute for Medical Humanities at the University of Texas Medical Branch. Brody authored the book, "Hooked: Ethics, the Medical Profession and the Pharmaceutical Industry."

To assure that the review panel obtains divergent information, the panel will conduct an open scientific hearing at which it will hear scientific and medical presentations from interested parties. The agreement requires the hearing to be broadcast live to the public on the Internet via the IDSA's website. The Attorney General's Office, Dr. Brody and the review panel will together finalize the list of presenters at the hearing.

Once it has collected information from its review and open hearing, the panel will assess the information and determine whether the data and evidence supports each of the recommendations in the 2006 Lyme disease guidelines.

The panel will then vote on each recommendation in the IDSA's 2006 Lyme disease guidelines on whether it is supported by the scientific evidence. At least 75 percent of panel members must vote to sustain each recommendation or it will be revised.

Once the panel has acted on each recommendation, it will have three options: make no changes, modify the guidelines in part or replace them entirely.

The panel's final report will be published on the IDSA's website.

--------------------
Positive 10 bands WB IGG & IGM
+ Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest

And still positive ELISA and WB two years after IV treatment
http://www.lymefriends.org/profile/blake

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sometimesdilly
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regarding who can be included on the guidelines review panel-

(snippets from the B's settlement doc)

1- (look under action plan (B7))

NO member of the review panel may have previously served on a Lyme guidelines panel. (IDSA or ILADS)
--------------------------------------

2- the chairman -" must be trained in infectious diseases"

3- the chairman "must not have previously published a particular viewpoint regarding Lyme diagnosis and treatment."

4- on the panel of 8-12, "at least one" physician with clinical experience treating Lyme must be included.

5- the review will be conducted in private sessions, and session transcripts will not be made public. Blumenthal will review.

6- there will be a SIXTY DAY window for input open BEFORE the review process can begin, for the purpose of collecting "medical and science evidence."

------

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bettyg
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dilly, thank you; i haven't read the pdf version yet! [group hug] [kiss]
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AliG
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Thank you everyone for the input. [Big Grin]

Thanks Dilly for the snippets! [kiss]
I still have the PDF open on another screen, but haven't mustered the strength to actually read it yet.

I would NEVER have thought that IDSA would agree to let any ILADS docs sit on the panel. They ARE "IDSA" guidelines.

It does stink that the doc who served on the first panel, but was omitted from the second issuance guidelines, won't be allowed either. We KNOW he had an opposing opinion. [Roll Eyes]

With 8000 members, how hard could it be for them to find a handful that would be willing to go along with them?

I hope that the internet broadcast will be enough to make them give conflicting scientific information serious consideration this time.

I think it will be VERY important to get MASSIVE viewership of that broadcast.

Perhaps we should get something in the works to disseminate the info on when it will be, with date & time blank, then when we know those details we can make a massive push to get it out to all of our local doctors. (Just in case they don't give much notice [Roll Eyes] )

The ILADS doctors can't sit on the panel, but they can't be excluded from presenting evidence at those hearings that conflicts with IDSA's narrow viewpoint.

I just noticed this:
quote:
5- the review will be conducted in private sessions, and session transcripts will not be made public. Blumenthal will review.
Blumenthal will review the transcripts, but how will the accuracy of the transcripts be insured. I'm guessing that no one but the panel will actually know what transpires during that review.

Does Blumenthal get the final say as to whether they've come to reasonable conclusions?

[confused]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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Lymen
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Please see that microbiologists may stand in our defense. These guys are rarely tainted by IDSA politics since they are not IDSA members. IDSA so far hasn't been messing too much in the field of basic research. Particularly if the researchers are based in the universities and not in some politically charged institutions such as CDC they should remain objective.

Do you remember that IDSA committee for questionable Guidelines 2006 actually had some random people? There was for example a health inspector who apparently (according to him) had some tick knowledge.

Regarding treatment the best Guidelines cannot help us much since they are based on the body of science.
Most of us are treated with some success with drug combination in a way similar to treatment of tuberculosis.

But if you review what has been published, nobody scientifically examined this type of treatment in LD, so there is nothing about it in medical literature.

What was published, are some papers when one drug at the time (monotherapy) was used for a short period of time and was:
1. found very effective (measured by seroconversion of ELISA)
2. found weakly effective (some symptoms better)
3. found ineffective

Also our experience is in agreement that drug mono therapy is rarely helpful in advanced Lyme disease.

We won't find scientific evidence (clinical trials) in science for our combo treatments that we feel are better choice.

However the conclusion should be that more research is needed and better treatments developed - not that abx do not work in LD. We cannot allow IDSA faulty logic here.


Tuberculosis treatment (prolong treatment, drug combination) has never been scientifically evaluated because science never had enough tools to do so easly. Also such a project would be prohibitively costly (dozens of millions of dollars).

If tuberculosis treatment would have to get through the same processes as IDSA are applying toward LD today there would be no treatment for tuberculosis today.

[ 06. May 2008, 07:24 PM: Message edited by: Lymen ]

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