There were 17 stories on the 7 pages including from many names I knew here from the board!
We had from Conn., NC, Ill, Iowa, Arizona, Calif., Mass., Florida, & Maryland
Well written every one! Considering my original letter was almost 700 words, they only removed 4-5 paragraphs worth! Surprised me; other really long ones were in there too.
Thanks Cindy for linking us so we could read them all; thought of copy/pasting them here, but that would take me forever. You folks can go & read them there.
Dr. Jones, I hope you are reading our letters there/here online! WE SUPPORT & LOVE YOU!
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bettyg
Unregistered
posted
read the link above on the wonderful SUPPORTIVE LETTERS from lymenet members/friends! Bettyg
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Gary Santaniello's Lyme Disease Divide is right on point and shows he has a fine grasp of the controversy.
This divide is perpetuated by doctors associated with the Infectious Disease Society of America. Their organization may have 8,000 totally misguided physician members, but there are thousands more of us who have suffered years of lost health thanks to their dogmatic self-serving views and guidelines.
Dr. Jones is a true humanitarian. He cured my grandson who was losing his vision thanks to chronic Lyme, and our family will be forever grateful to him.
How can the medical community continue to turn a blind eye on the thousands of kids and adults who have had their health restored thanks to the ILADS doctors?
[ 23. September 2006, 05:28 PM: Message edited by: nan ]
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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bettyg
Unregistered
posted
I even heard from 1 of the men from the marshall protocol board I met when I joined it first; he had read my Conn. article!
Amazing how fast these things travel once posted ONLINE! like our daily jokes, etc. lol
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Thanks for the link!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Today's NE Magazine has follow up to last week's article, including a good letter to the editor from Dr. P. Check it out: (hope I did this right!)
posted
An excellent letter. Sticks with the facts, does not hurl accusations. Is on the high road, unlike the opposition which uses every dirty trick and lie in the book.
His solution, though, of a medical conference.....
There have been conferences, but our side was specifically excluded, their abstracts, poster sessions rejected. These were international conferences which were engineered by the IDSA crowd to ignore the opposition to their guidelines, etc. Wormser was responsible for the last such conference. This all was intentional. If the readers of this newspaper knew all the underhanded, dishonest, bullying behavior that has occurred by Shapiro and his cronies, they would be horrified. Too bad they won't find out.
I am thinking here of the insurance work, the patents and profits made on poorly performing tests, etc; the ALDF, set up after the LDF and intended to confuse the public about the facts of Lyme; the publication of several books using the exact same titles as the Forschner and Lang books, in order to confuse the public; the old boy network skewing of publications and grants (peer review helps to promote a single viewpoint); and their willingness to charge doctors and serve as witnesses in these kangaroo court state medical board hearings. I am thinking now of people like Dattwyler, Steere, Shapiro, etc. All of Steere's co-authors on one of his major articles have taken part in these cases in courts, and state medical board hearings.
And yet having fed at the public trough of federal and pharma grants, not to mention the patents, they pretend to be only interested in science, not in profits.
It is just sickening that they have gotten away with this and if the public knew all these facts (which no newspaper will print) they would completely lose faith not only in medical science but in our major medical institutions too.
They say there is honor among thieves, but two of those guys sued each other in a fight over the lyme profits their biotech company made. It revolved around whether the crummy vaccine or lousy test kit had brought in more money and therefore entitled one of these guys to a larger share of the ill-gotten gains.
[ 24. September 2006, 11:14 AM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Well, it has finally come to light that the NIH and CDC had conflicts of interest -- maybe it's time to turn and look at IDSA.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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bettyg
Unregistered
posted
Yes, Dr. P had an excellent letter; NO ATTACKING like the other side did.
Mutual conference; I hope something like this can be accomplished so we CHRONIC LYME patients do NOT suffer due to conflicts & UNDER TREATMENTS by IDSA! Bettyg
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I am writing to praise your evenhanded coverage of the disparate viewpoints on chronic Lyme disease and the issues that currently face Dr. [Charles Ray] Jones. I'd also like to take this opportunity to present some of the science behind these issues.
There are in excess of 20 published articles in some of the most well respected medical journals which document unequivocally the persistence of Lyme bacteria in patients with chronic symptoms who have failed the IDSA's recommended antibiotic treatment protocols. Curiously, some of this very same published data to which I refer has been authored by some of those who penned the IDSA's Practice Guidelines for the Treatment of Lyme Disease. Despite this, these guidelines support only short-term antibiotic therapy.
Directly from these guidelines, it is unambiguously stated that in a study of 123 patients with early Lyme disease who were treated with 20 days of either of two different antibiotics commonly prescribed, "19 percent and 16 percent of patients, respectively had persistent subjective complaints." Failure rates of 19 percent and 16 percent are hardly inconsequential. More worrisome still, several studies document that antibiotic therapy in accordance with IDSA's guidelines for patients with later stage Lyme disease results in chronic symptoms in 25-50 percent. The IDSA is aware of this because one of the authors of the guidelines was an author of one of the aforementioned studies.
[Dr. Henry M.] Feder, who states, "the great, great majority of Lyme patients fit a very straightforward kind of pattern" and [Dr. Eugene] Shapiro, who states, "If a patient has only non-specific symptoms, it's unlikely due to Lyme" may argue that these patients with chronic symptoms after Lyme disease no longer have the illness due to the presence of only subjective complaints. For your readership's clarification, objective clinical signs such as joint swelling and Bell's palsy can be seen by the physician, whereas subjective complaints such as headache, fatigue, and muscle pain are not visible to the physician.
As doctors, we are all taught in medical school that over 90 percent of the critical information required in clinical decision-making comes from talking to the patient. Somehow, this has been overlooked and been supplanted with an obsession for objective findings in an illness that is subjective rich and objective poor. In fact, in a published study that was co-authored by the former head of the CDC's division in charge of Lyme disease, they found that in patients with early Lyme disease documented by the initial prototypical rash, apart from the rash, only 10 percent had objective signs. In the other 90 percent, only subjective complaints such as fatigue, muscle pain and headaches were present.
Feder and Shapiro may argue that these patients had the rash, so therefore they had an objective finding. This is true. However data from the CDC document that only 68 percent of patients with Lyme disease have a history of the rash. This figure is likely over-inflated due to the selection bias inherent to the fact that the rash is part of the reporting criteria. In another study by physicians of the camp that agrees with the IDSA, they found that in late Lyme disease, only 22 percent had a history of the rash. This figure is likely under-inflated due to selection bias in the opposite direction, for patients with Lyme disease who have the initial rash are more likely to receive early treatment and less likely to develop late Lyme disease. In yet another study of chronic Lyme disease despite antibiotic therapy, where the persistence of the organism was well documented, a full 50 percent of the patients had subjective symptoms only.
Shapiro states that prolonged antibiotics can cause gallstones and heart infections. This is half-true. Prudence requires clarification of this statement. These risks occur with Rocephin, an intravenous antibiotic which can be used for Lyme. They do not occur with oral antibiotics. Everything boils down to a risk/benefit analysis. I personally was treated with over two years of doxycycline and tetracycline for acne as a teenager. It's a curious double standard that treating zits with long term antibiotics is OK, but treating similarly with antibiotics for Lyme disease, an illness which can cause significant disability, is frowned upon by the IDSA. Given that the NIH has only funded essentially three large prospective blinded placebo controlled studies on the antibiotic treatment of patients with chronic Lyme disease and that two of the three found statistically significant benefits to treatment, it may be worthwhile for the IDSA to re-assess a risk-benefit analysis on this issue.
The ILADS Evidence-Based Guidelines for the Management of Lyme Disease are currently the only Lyme treatment guidelines listed on the National Guidelines Clearinghouse under the auspices of the Department of Health and Human Services. Despite the fact that these guidelines were forged from the evidence-based medical literature and published in a peer reviewed infectious disease journal, Feder states that "The bias of ILADS is to make everything fit Lyme disease." His statement is not only unsupported, in my opinion it betrays a prejudice against doctors that treat Lyme disease. I think it underscores the absolute necessity of establishing a dialogue across the medical divide.
A medical conference where the two sides of Lyme disease can present their data would be a great first step toward this goal.
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