Sir Real
by Sir Real » Tue 7 Apr 2009 19:44
"OneGuest":
1. Here is L.Johnson's viewpoint on this topic as it relates to IDSA
"guidelines" on lyme :
When you say "L. Johnson"...are you referring to the person who can't read and comprehend settlement agreements, or, perhaps the doctor, (the person sometimes sarcastically referred to as Dr. "Large Johnson")?
Do you know if this Lorraine Johnson person works for ILADS or for us? Seems like she is constantly expressing opinions symapthetic to ILADS physicians...even co-authoring articles with them.
I'm curious.
I tried to find out, awhile back...if she was getting paid, as an attorney, out of funds collected from Lyme patients for the defense of Jones and others, for work she has performed on behalf of some "LLMD"s...and couldn't get an answer...
...which is kind of curious, because if she wasn't...you would think that they would just say so...wouldn't you?
I wonder why I can't get an answer to that.
I asked Pat Smith ...and she said that she 'didn't have an answer for me". (Which isn't quite the same as saying that she doesn't know...is it)?
She said that CALDA was "independent but affiliated"...whatever that means.
So, I asked her if she didn't want to know the answer...that if "L. Johnson" was getting paid...then shouldn't Lyme patients whose funds are going to that end...be told?
No answer.
So, I don't know what to think...but I think that some people who never-endingly demand accountability and transparency from others...but might be a little short on it, themselves.
I also wonder what in the hell this comment from Phyllis Mervine of CALDA means, in context:
"I agree with the person who said nonprofits don't ask the patients what to do. Nonprofits are businesses. They are supposed to have missions and a business plan. They are not democratically elected representatives of any patient group who take polls to decide what they should do next"
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Board index ‹ Information & Discussion ‹ General
Volkman's critique of IDSA guidelines
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Volkman's critique of IDSA guidelines
by ahhclem » Tue 31 Mar 2009 14:04
Sure looks like to me that Steere and company got "spanked" by one of their own.
David Volkman, Ph.D., M.D. , Emeritus Professor of Medicine and Pediatrics SUNY, Stony Brook, NY has written a letter to the new IDSA panelists debunking much of the old guidelines.
http://www.lymedisease.org/news/lymepolicywonk/82.html
from CALDA Lyme Policy Wonk blog:
David Volkman, Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook, and previously Senior Investigator with the National Institute of Allergies and Infectious Diseases, has submitted the attached letter to the IDSA pursuant to its document submission process. He has performed both clinical and bench research in Lyme disease since 1985. Given his impeccable credentials, outlined in the first paragraph of his letter, his submission should carry considerable weight with the panel. Among other things, he points to the suppression of research and stifling of the types of investigative inquiry necessary to begin to address pressing issues for Lyme patients—the need for better testing, the need to acknowledge persistence and start looking for treatment protocols that help patients get better, the need to keep surveillance definitions outside the arena of patient diagnosis, the need to acknowledge the usefulness of PCR testing, and the need to avoid prophylaxis regimens that may promote chronic Lyme. His letter smells a little bit like “courage” to me—a pretty rare commodity these days.
There is a .pdf link to Volkman's entire letter, complete with references, at the bottom of the article.
[edited for a typo, despite previewing first]
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Re: Volkman's critique of IDSA guidelines
by hv808ct » Sat 4 Apr 2009 14:42
Well, at least some of the comments coming into the IDSA regarding the guidelines review are from credible and rational sources.
David Volkman, Ph.D., M.D., Emeritus Professor of Medicine and Pediatrics, SUNY, Stony Brook, NY, fired off a referenced, 10-page letter about the guidelines and the authors of those guidelines.
He makes some good points.
I wouldn’t presume to argue with him about the immunology of natural infections or the proper treatment of human patients, but I think his reliance on the clinical outcomes of 17 patients from 1988, and the white-footed mouse as a model of human infection are serious weaknesses.
He writes that there is “…both animal and human evidence of persistent borreliosis following inadequately treated LD….” The critical word in that sentence is “inadequately.” I don’t think anyone would argue that “inadequate” treatment of any infection would not encourage persistent or chronic infection.
Commenting further about those 17 patients, he writes, “…all lacked detectable antibodies against borrelia. Although early antibiotic treatment abrogated antibody responses, it did not eradicate infection. When retreated, most of these chronic patients markedly improved within a month of completing a course of intravenous ceftriaxone, consistent with their problems being due to persistent, ongoing occult infection; although borrelia was not isolated in most cases….”
The issue of abrogated antibody responses and seronegative Lyme is interesting, but not exclusive to Lyme disease. Stopping any infection with effective antimicrobials should also truncate an immune response to that infection. I suppose the absence of antibody in an infection (i.e., seronegativity) only becomes an issue when one is relying on serology for a diagnosis.
Volkman also suggests that, “IDSA committee members deny the possibility of persistent seronegative Lyme disease.” I think all they deny is that pumping expensive antibiotics into symptomatic people on an open-ended schedule is somehow beneficial.
Volkman’s answer to the serology dilemma seems to be PCR. Maybe. I’m not sure. It’s sensitive and specific: just like a good diagnostic should be. But what does it tell you about infection, disease, and immunity? I’m sure if someone subjected me to enough PCR they could possibly find M. tuberculosis, MRSA, N. meningitidis, S. pyogenes, and measles. I don’t have TB, a staph or strep infection, meningitis or the measles. I might have DNA to these bugs, but there’s a big difference between being “colonized” and being “infected.” Should I be treated anyway just because a PCR assay says I have bug X?
As for the lowly white-footed mouse, I don’t think it’s a very credible model of natural infection in humans. Mice don’t show much morbidity and seem to clear their borrelial infections. I guess they’ve had a few million generations to evolve and adapt to ticks and B. burgdorferi since its arrival from Europe some 15,000 years ago.
Regarding financial conflicts and conflicts of interest, I wish Volkman had spent some time pointing out those kinds of conflicts among Lyme advocacy organizations, A.G. Blumenthal, Lyme specialty labs, and the many cash-and-carry private practice physicians who make a nice living off of the ignorant, the gullible, and the desperate. Fortunately, some of them are now in jail.
Just today, one of these online Lyme patients complained about how much his Lyme Literate MD was costing him. He wrote, “My first visit was $450 for 1 1/2 hours. The lab testing was approximately $1600.” (Two weeks ago, I had a complete physical, hematology and blood chemistry, EKG, PPD, chest film, and a well-deserved colonoscopy. Out-of-pocket cost was zero. But then I have good insurance and I don’t see quacks.)
So Volkman could have spent a few paragraphs talking about these for-profit LLMDs; their ties to i.v. infusion companies and diagnostic labs with “unusual” Lyme tests; their patient trolling at Lyme advocacy meetings; their memberships on Lyme advisory boards; their partnerships in Lyme clinics; their hawking of nutritional supplements and quack treatments; and, of course, their lack of published evidence and peer-review to back up their practices and claims.
Last year, Volkman wrote, “Although the use of repeated courses of antibiotics for a putative borrelia infection is unsupported and may cause serious morbidity, persons with evidence of previously inadequately treated Lyme disease may be seronegative and may benefit from adequate antibiotic therapy.” (My emphasis.)
Well, yes, I don’t thing anyone would disagree. But he’s describing a minority of patients. The majority of patients get bit, get sick, test seropositive, and respond to antibiotics.
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Re: Volkman's critique of IDSA guidelines
by minitails2 » Sat 4 Apr 2009 20:26
Ah, Mr. McSweegan, you're back.
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Re: Volkman's critique of IDSA guidelines
by ahhclem » Sat 4 Apr 2009 21:41
There are many compassionate docs who see that their patients are still ill after being treated by "guidelines" and are honestly torn as to what to do. Volkman's letter is a very credible resource to be handed out to them and help them to wake up and start thinking critically for themselves as to what is really going on.
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Re: Volkman's critique of IDSA guidelines
by Sir Real » Tue 7 Apr 2009 18:47
"hv808ct":
Regarding financial conflicts and conflicts of interest, I wish Volkman had spent some time pointing out those kinds of conflicts among Lyme advocacy organizations, A.G. Blumenthal, Lyme specialty labs, and the many cash-and-carry private practice physicians who make a nice living off of the ignorant, the gullible, and the desperate. Fortunately, some of them are now in jail.
Just today, one of these online Lyme patients complained about how much his Lyme Literate MD was costing him. He wrote, “My first visit was $450 for 1 1/2 hours. The lab testing was approximately $1600.” (Two weeks ago, I had a complete physical, hematology and blood chemistry, EKG, PPD, chest film, and a well-deserved colonoscopy. Out-of-pocket cost was zero. But then I have good insurance and I don’t see quacks.)
So Volkman could have spent a few paragraphs talking about these for-profit LLMDs; their ties to i.v. infusion companies and diagnostic labs with “unusual” Lyme tests; their patient trolling at Lyme advocacy meetings; their memberships on Lyme advisory boards; their partnerships in Lyme clinics; their hawking of nutritional supplements and quack treatments; and, of course, their lack of published evidence and peer-review to back up their practices and claims.
Yes.
Watching this "debate" (using the term loosely) unfold for a number of years now, one of the things that never seems to amaze is the degree to which Lyme patient "advocates" (using that loosely, also), are completely unwilling or unable to admit the degree to which "LLMD"s have a vested financial stake in the issue...
...and by aligning themselves so noticably and publicly with those with such an obvious stake...that they call their own motivations and credibility into question.
The aggressive cult-like tactics that these same groups employ in an exteremely unsophisticated and often just plain ridiculous manner...actually hurt and harm the legitimate issues of Lyme patients.
In my opinion, even in the unlikely event that this whole "antitrust" business (using that term incorrectly)...'Blumenthal's not-so-excellent Lyme adventure'...produces anything in the way of benefit to anyone, whatever...
...it still was, and is, an inappropriate use and abuse of power and NOT the appropriate or even an intelligent way to address the issues...or the legitimate forum or method by which to present those issues....and ultimately produced nothing whatever to justify the initial antitrust claim.
See also:
http://annalsofneurology.wordpress.com/ ... rs-debate/
Us vs. Them
Patient groups, who were represented on the ILADS guidelines-development committee by Pat Smith of the Lyme Disease Association, routinely cite the ILADS guidelines as evidence that prolonged antibiotic treatment for chronic symptoms is a reasonable approach to care in the hands of the right doctor. Others charge that the ILADS treatment parameters are being used to justify antibiotic therapy for nebulous symptoms that cannot be definitively linked to Lyme infection.
“Reimbursement is high for antibiotic infusion. There are a number of physicians in the country - primarily family physicians - who have made themselves ‘Lyme disease experts’ and treat chronic Lyme with antibiotics,” said Roos of Indiana University. “Every patient deserves to be thoroughly evaluated, but they should not be in the hands of these ‘Lyme clinics. They should go to academic medical centers and see neuro-infectious disease specialists who have no financial interest in them having Lyme.”
Lyme researcher David Volkman, an emeritus professor at the State University of New York at Stony Brook, has a unique perspective on the whole Lyme debate: he is solidly in the middle. In fact, he said: “I think I am despised by both groups.”
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Re: Volkman's critique of IDSA guidelines
by Joe Ham » Tue 7 Apr 2009 20:11
If Blumenthal's action was so off the wall (unfounded) then why did IDSA settle by agreeing to review and possibly rewrite the Guidelines with fresh authors?
And if it was intended by IDSA to be a rubber-stamp operation then why the extended "comment period"?
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