![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 3 to 27 of 27. Go back in thread:
Posted by seldomseen on February 15, 2009, at 12:00:17
In reply to No Evidence For Chronic Lymes Disease, posted by bulldog2 on February 15, 2009, at 10:33:06
Here is a link to the full article in NEJM. It is freely available so I don't think I'm violating any copyright law.
http://content.nejm.org/cgi/content/full/357/14/1422
And a response
http://content.nejm.org/cgi/content/full/358/4/428
I don't really know enough about it to form an opinion either way, but the first line of the press release really cracked me up.
Seldom.
Posted by Garnet71 on February 15, 2009, at 12:33:09
In reply to No Evidence For Chronic Lymes Disease, posted by bulldog2 on February 15, 2009, at 10:33:06
Bulldog,
From the first article you posted:
"They concluded there is no scientific evidence that the Lyme bacterium persists after an initial antibiotic treatment of two to four weeks, and no scientific basis for long-term antibiotic treatment."
Just wanted to clarify - chronic vs. acute, not that you had meant your post to come across differently. I don't have time to read all those articles you posted, but skimmed through them, but to not defer anyone from seeking Lyme's treatment, this article does not deny the existence of Lyme - just the use of long-term treatment.
Sidenote: as to flaws in studies, who doesn't find them in just about any study that exists? For every study that concludes one thing, another will be created to try to disprove it and scientists will always come along to criticize the findings. Just the nature of 'studies'. That's probably a reason why we (as a laypersons) can't make sound conclusions from reading a few articles - a person really has to read everything out there on the subject and conclude whether or not a higher theory is valid. One of the problems I see is the lack of inter-disciplinarism (is that a word?), lack of cross-interest by researchers in their chosen fields.
What you post here, though is good information. Hope I can come around to reading it all soon. Thank you!!!
Posted by Phillipa on February 15, 2009, at 13:24:40
In reply to Re: No Evidence For Chronic Lymes Disease » bulldog2, posted by seldomseen on February 15, 2009, at 12:00:17
It's confusing for sure as I consider myself free of lymes but the dumb health dept differs just because of a Western Blot as was told I'd always test positive and so far can't find anything to dispel this on goggle. Kind of anger's me as I'd put it to rest so to speak til that doc here a rheumatologist insisted on another Western Blot. The first doc to find it was a pdoc that found it with routine testing. Then sent to the head of infection control and a rheumatologist who worked together. I never wanted all the treatment it just was something else to worry about. They claimed since from CT that I must have gotten it there. ANA at the time was 1:2800 or something. Ruled out MS with MRI and lymes in cerebral spinal fluid with two spinal taps. Did I ask for this treatment or seek it out no it was thrown at me as had gone to hospital for a med adjustment. Kept me over a month and fought a bill with two insurances at the time of over 60 some odd thousand dollars. As far as I'm concerned to much MSRA and Flesh eating bacteria and even kids earaches that no longer respond to antibiotics to even want to find a lymes doc. So never planned to and am not. Let the docs figure lyme's out the economy is a worse worry to me. Phillipa ps thanks seldom guess my frustration is showing hence why I don't like seeing doctors.
Posted by bulldog2 on February 15, 2009, at 14:50:37
In reply to Re: No Evidence For Chronic Lymes Disease » bulldog2, posted by Phillipa on February 15, 2009, at 10:50:03
> The article mentions IV antibiotics mine is documented in a folder with copies of positive bands of affected infectious bands when active. Oral was what my infection control specialist used for two years. What do you do when the health dept tells you you are positive and you repeately tell them you were treated? Gave the doc here the folder from infection control doc in other city. I feel the same way since no pain other than old age back. So what's the answer? Phillipa
I think you are talking about people who don't test positive on either of the lyme's test and are tested based on clinical symtoms.
Now if you had lyme's before you will always have some bands positive. However active lyme's would be determined by how high the bands go. They can tell wether it is active.
I think the doctor makes a good point. There's never been an established test that says after successful antibitic treatment that these bacteria harbor in the body.
Arthritis is very normal for someone of you age.
Unless you have fever and swollen lymph nodes I wouldn't do antibiotic treatment. Very bad for the body and you will become resistant to them.
Posted by Phillipa on February 15, 2009, at 15:33:21
In reply to Re: No Evidence For Chronic Lymes Disease, posted by bulldog2 on February 15, 2009, at 14:50:37
Bulldog we actually agree. Please if you know a link or site that states this info would you post it so I can let it rest. Would much appreciate it Thanks Phillipa
Posted by bulldog2 on February 15, 2009, at 16:17:15
In reply to Re: No Evidence For Chronic Lymes Disease » bulldog2, posted by Phillipa on February 15, 2009, at 15:33:21
> Bulldog we actually agree. Please if you know a link or site that states this info would you post it so I can let it rest. Would much appreciate it Thanks Phillipa
Seldomseen has the links to the study and a response. I certainly wouldn't embark on antibiotic therapy just on arthritis. I would do a cbc first to find out if white blood count is elevated.
Posted by bleauberry on February 15, 2009, at 18:58:31
In reply to No Evidence For Chronic Lymes Disease, posted by bulldog2 on February 15, 2009, at 10:33:06
You have to read the article closer. It doesn't say what you are claiming. Not at all. You read stuff into it that isn't there.
I found myself rebutting almost every sentence.
There were a hundred or more points to clarify. Here is just one of those hundred...
He talks about Chronic Lyme as a recurring infection after the initial antibiotic treatment is completed.That represents a very small minority of people with Lyme disease. Most people with Chronic Lyme are people that were never diagnosed in the first place and never had antibiotics after a tick bite, either because they didn't know they had been bitten or didn't know it was something that required attention. The author is not talking in this article about this vast majority of Lyme patients who never had any kind of treatment.
I agree with his view on IV antibiotics. Not a good route.
What Chronic Lyme Disease means is...it was never recognized and never treated in the early stage and has been allowed to progress into a stubborn longterm illness.
Another problem...he says the success of antibiotics is "anecdotal". Who the heck cares except for a mathematician? Is your job to get people well or push numbers on a desk?
All we know for sure is that tens of thousands of people who had clinical symptoms of Lyme, had tick exposure, have not had great success with other medications, not great success with other doctors, not great success in psychiatry, tested negative on the unreliable lab tests for Lyme, were labelled with mystery names such as Fibromyalgia, Chronic Fatigue Syndrome, Depression, Anxiety, and MS (just a pitiful way of mankind to say "we don't know what's wrong with you, but something is wrong, and we'll call it this")....well, a stunning majority of these people either improved significantly or become completely cured on well-chosen specific oral antibiotics.
That's all we know for sure. The author wants to wait for scientifically designed trials to show what is already happening in the real world. Sorry doc, while you drive your Porche and take Carribean vacations saying evidence on Lyme is only anecdotal, patients of OTHER docters are experiencing what you should be doing with yours...getting well.
There is a Lyme expert much greater than this author. His name is Dr Sam Donta of Boston General Hospital and Medical Center. The many articles and successes he has had put this author's views to shame.
It is very dangerous and misleading to cherrypick information, such as basing an opinion on one viewpoint, one source, or one misread sentence. One has to look at the entire body of evidence, pros and cons equally, to make an informed personal judgement that has any sense of wisdom attached to it.
Posted by Phillipa on February 15, 2009, at 20:05:24
In reply to Re: No Evidence For Chronic Lymes Disease, posted by bleauberry on February 15, 2009, at 18:58:31
Found this on pubmed. Phillipa
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1: Ann Intern Med. 1992 Aug 15;117(4):281-5.Related Articles, Links
Lyme disease associated with fibromyalgia.Dinerman H, Steere AC.
Tufts University School of Medicine, Boston, Massachusetts.
OBJECTIVE: To describe the clinical and laboratory findings as well as results of treatment in patients with Lyme disease associated with fibromyalgia. DESIGN: Observational cohort study. The mean duration of observation was 2.5 years (range, 1 to 4 years). SETTING: Diagnostic Lyme disease clinic in a university hospital. PATIENTS: Of 287 patients seen with Lyme disease during a 3.5-year period, 22 (8%) had fibromyalgia associated with this illness, and 15 (5%) participated in the observational study. MEASUREMENTS: Symptoms and signs of fibromyalgia, immunodiagnostic tests for Lyme disease, and tests of neurologic function. RESULTS: Of the 15 patients, 9 developed widespread musculoskeletal pain, tender points, dysesthesias, memory difficulties, and debilitating fatigue a mean duration of 1.7 months after early Lyme disease; the remaining six patients developed those symptoms during the course of Lyme arthritis. At the time of our evaluation, late in the course of their illness, 11 patients had positive immunoglobulin (Ig) G antibody responses to Borrelia burgdorferi by enzyme-linked immunosorbent assay (ELISA), one had a positive Western blot, and the three seronegative patients had positive cellular immune responses to borrelial antigens. Four patients had abnormal cerebrospinal fluid analyses that showed an elevated protein level, a slight pleocytosis, or intrathecal antibody production to the spirochete. The signs of Lyme disease resolved with antibiotic therapy, usually intravenous ceftriaxone, 2 g/d for 2 to 4 weeks, except in one patient with persistent knee swelling. However, 14 of the 15 patients continued to have symptoms of fibromyalgia. Currently, only one patient is completely asymptomatic. CONCLUSIONS: Lyme disease may trigger fibromyalgia, but antibiotics do not seem to be effective in the treatment of the fibromyalgia.
Publication Types:
Case Reports
Research Support, Non-U.S. Gov't
Research Support, U.S. Gov't, P.H.S.PMID: 1637022 [PubMed - indexed for MEDLINE]
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Posted by Phillipa on February 15, 2009, at 20:39:13
In reply to Re: No Evidence For Chronic Lymes Disease » bleauberry, posted by Phillipa on February 15, 2009, at 20:05:24
Last one would like to leave my experience behind. Phillipa
From the LymeLight Newsletter of the Lyme Disease Foundation
--------------------------------------------------------------------------------
The controversies surrounding Lyme Disease diagnosis and treatment and why it is not uncommon for patients to experience persistent symptoms despite receiving conventional" (short-term) antibiotic therapy for Lyme disease.
"Randomized controlled studies of treatment of patients who remain unwell after standard courses of antibiotic therapy for Lyme disease are in progress. To date, there are no convincing published data that repeated or prolonged courses of either oral or iv antimicrobial therapy are affective for such patients. The consensus of the Infectious Disease Society of America (IDSA) expert-panel members is that there is insufficient evidence to regard "chronic Lyme disease" as a separate diagnostic entity."So reads the most disturbing statement in the latest Lyme disease diagnostic and treatment protocol, formulated by the Infectious Disease Society of America (IDSA) and published in the September issue of Clinical and Infectious Diseases (2000; 31:1-14). Not surprisingly, the protocol dismisses the existence of chronic Lyme and provides clinicians with a virtual "four weeks cures all" protocol. The LDF expected the contents of the protocol after it discovered internal National Institutes of Health (NIH) documents that confirm the IDSA protocol was coordinated with a CDC-funded protocol to ensure they were identical. Another unsurprising aspect of the protocol is that it does not disclose IDSA committee members' conflicts-of-interest, as some committee members consult for insurance companies and Health Maintenance Organizations.
The IDSA's chronic Lyme disease (LD) statement is especially troubling because it comes during a time when physicians who recognize and aggressively treat late-stage LD are being charged by state licensing boards with overdiagnosis and overtreatment of the disease. For such doctors the protocol adds another "authoritative" document dictating "appropriate management" of a disease in which treatment failure can occur in any stage and no test can definitively diagnose or distinguish active from past infection. Adding further confusion to doctors trying to responsibly help patients is that no consensus has been reached about the clinical spectrum of LD, which the Centers for Disease Prevention and Control (CDC) states is a clinical diagnosis not to be ruled out based on negative tests."The implications of the guidelines are chilling," said Kenneth Liegner, M.D., a LD specialist from Armonk, NY, an area hyperendemic for Lyme disease. "They place physicians who treat beyond [IDSA] parameters in an extremely defensive position." Sam Donta, MD a Boston University Hospital infectious disease specialist, has already experienced the impact IDSA's statement is having on other clinicians. "Patients have already told me doctors are telling them there is no such thing as chronic Lyme disease," he said.
Donta, who like Liegner treats late-stage LD patients from around the country with longer-term antibiotic therapy, said he too was stunned that the Society could come to such a conclusion, especially since the National Institutes of Health (NIH) believes in chronic LD enough to study it.
Many physicians and researchers voice displeasure that since Lyme was supposedly "identified" in and around Lyme, Connecticut in 1975 by rheumatologist and IDSA committee member Allen Steere (a medical/insurance consultant), he and a few of his colleagues have become crowned "leading authorities" on LD. They say the approach they and the CDC take studying the disease continues today: minimize medical costs associated with the disease by downplaying its seriousness and defining it in the narrowest terms possible. Such an approach limits patient access to tests, reduces the official number of patients reported to have the disease, and reduces treatment costs, they say.
Initially Steere believed LD was a viral arthritis that affected only children, its symptoms were limited to arthritic conditions, and the disease eventually went away on its own. Southeastern Connecticut shoreline towns were thought to be the only place in the country where one was at-risk for the disease. It was also believed neurological manifestations of LD, common in Europe, did not occur with US strains of the LD bacterium, Borrelia burgdorferi, (Bb).
As science evolved, Steere and his colleagues, most of which continue to receive large government grants to study the disease, were slow to acknowledge Lyme is often a multisystemic disease. As it became apparent that symptoms often did not disappear on their own, they acknowledged antibiotic treatment was sometimes necessary to eradicate the Lyme bacteria. They steadfastly maintain, however, that short-course antibiotic therapy is highly curative, seronegative disease is rare, and patients who remain symptomatic after treatment suffer from misdiagnosis or "post Lyme syndrome", which attributes persisting symptoms to past, not active infection.
While initial conclusions about the disease have been modified, their narrow definition of the disease allows the most conservative conclusions relative to diagnosis and treatment to be made. Patients in late disease with severe neurologic symptoms, which are the most problematic to diagnose and difficult to cure, rarely meet the narrow CDC surveillance criteria (e.g. swollen joint(s) and positive two-tier tests) used as inclusion criteria for research studies. As a result, a large void in Lyme research exists.
Testimony by IDSA committee member/insurance consultant Raymond Dattwyler, MD during a 1994 Food and Drug Administration (FDA) meeting on the Lyme vaccine reveal enough gray areas in scientists' understanding of the disease to suggest standardization of diagnosis and treatment of LD is not yet possible. Nationally-based treatment trials of erythema migrans, Dattwyler said, may suggest regional differences in patients' symptoms and response to antibiotic therapy due to many different strains of Bb found throughout the U.S. Dattwyler also testified that patients who mount a weak immune response to the disease tend to have worse disease and a greater chance of treatment failure than do those who mount a vigorous immune response.
In addition, Dr. Dattwyler echoed the consensus among experts concerning the relationship between the LD bacteria and how it affects humans. "I don't think we have fully delineated all the various clinical manifestations associated with this infection," he said. Several times throughout his testimony Dattwyler repeated that sentiment.
Dr. Liegner has concerns that suggest IDSA bias against the existence of chronic LD. "It's amazing that the Committee ignored piles of published case studies detailing chronic Lyme because they're not double-blinded peer-reviewed studies," he said. Liegner went on to echo the consensus among he and his colleagues: In lieu of the absence of such research and disagreement among experts over the etiology and clinical spectrum of the disease, there are no "evidence-based" experts qualified to determine appropriate standards of care for LD. Therefore, Liegner said, empirical treatment, or treatment based on patient response, should be the standard of care.
Dr. Liegner also expressed concern that out of 99 studies cited in the protocol, only two examines chronic LD. One cited study by Dr. Steere, "Chronic neurologic manifestations of Lyme disease" (N Engl J Med 1990; 323:1438-44) evaluated the outcomes of patients with late neurological LD symptoms when treated with iv ceftriaxone (2 grams daily for two weeks). Of 27 adult patients, 17 (63%) of patients had "uncomplicated improvement." 6 (22%) had improvement and then relapsed and 4 (15%) had no change in their condition. Regardless of this study's 66% "uncomplicated improvement" rate, IDSA recommends treating late neuroborreliosis with 2-4 weeks of ceftriaxone. Guidelines state "response to treatment may be slow and incomplete." Unless relapse is shown by "reliable, objective measures" repeat therapy is not recommended.
An abstract presented by IDSA committee member Dr. Dattwyler at the VII International Congress on Lyme Borreliosis in 1996 revealed similar statistics. That study evaluated the effectiveness of intravenous orintramuscular injections of ceftriaxone, 2 grams daily, for 2 versus 4 weeks. Patients in the study had to have objective evidence of a usculoskeletal, neurologic or dermatologic disorder compatible with the diagnosis of LD and positive ELISA and Western blot tests.
The abstract reported clinical cure rates of 76% for patients treated for 14-days and 70% for those treated with 28-days. While the 28-day group had a lower efficacy rate, patients in this group were "more severely ill" than those treated for two-weeks. (No data concerning patients' specific immune response was included.)
To be eligible for the study, patients must have had an erythema migrans or exposure to an endemic area no less than 3 months prior to enrollment. Therefore it is likely most patients, if not all, were infected less than four months prior to treatment. Doctors such as Liegner and Donta find the hardest patients to treat are those who are likely to have been infected many months or even years before getting diagnosed.
Despite assertions by Dr. Dattwyler that a positive test stands a 98% chance of being a false-positive (1993 WLIW TV interview), the protocol does not explicitly state what constitutes "reliable, objective measures" that would warrant extended therapy when i.v. treatment fails to alleviate symptoms of neroborreliosis. Using direct-detection tests such as PCR, the experience of front-line physicians like Donta and Liegner find such short duration therapy in late stage cases is not likely to eradicate the LD spirochete. They find several months or more of therapy is often required before a patient is symptom-free/relapse free. In some patients, restoration of prior health may not be possible.
Many case reports support the adaptation of a longer-term treatment approach. Liegner has published case studies detailing Bb's ability to evade antibiotic destruction, including "Recurrent erythema migrans despite extended antibiotic treatment with minocycline in a patient with persisting Borrelia burgdorferi infection" (Journal of the American Academy of Dermatology, 1993; 28: 312-314). Numerous full text articles detailing persistence or relapse of LD despite "appropriate" or "conventional" antibiotic therapy have also been published in peer-reviewed journals.
Among the most compelling published evidence of chronic infection despite prolonged antibiotic therapy is the case study "Seronegative Chronic Relapsing Neuroborreliosis," (Eur Neurol 1995; 355: 113-17). It details a patient whose serum was consistently negative for free antibodies for Bb infection, but had laboratory evidence of active infection in the cerebrospinal fluid (CSF). The patient, a previously healthy 58-year-old woman, received four courses of intense antibiotic therapy: 3-weeks of intravenous ceftriaxone followed by 8-weeks of ceftriaxone; 2 weeks of intravenous ceftriaxone followed by 19 weeks of doxycycline; 3-weeks intravenous treatment followed by additional treatment with doxycycline; and 2 weeks of intravenous ceftriaxone.
Evidence of active infection was found each time after intense prolonged antibiotic therapy was administered. Relapse occurred soon after treatment was stopped and Jarish-Herxheimer episodes were experienced each time treatment was initiated. (J-H reactions are symptoms that include fever and nausea and are believed to be cause by the body's initial reaction to toxins from dead Bb.) When the patient was given clarithromycin for 22 months, no new symptoms or deficits occurred.
The report concludes the case is "an unusual case of seronegative Lyme disease" in a patient with "chronic relapsing Bb infection." Renowned neuro-Lyme expert and IDSA committee member Patricia Coyle, MD, SUNY Stony-Brook School of Medicine, co-authored the article. She did not respond to Email requests to discuss the IDSA protocol.
In addition to its rebuttal of chronic Lyme and endorsement of a short-term protocol, the way the Society conducted itself while formulating the guidelines remains a concern to many scientists. Dr. Donta was originally a member of the IDSA while it was drafting the protocol. He says the committee "disbanded" after years without success of trying to agree on anything beyond diagnosis and treatment of early-stage disease. He said during his time on the committee, no statement on chronic LD was included in the protocol's original draft.
When Donta learned the guidelines were going to be published, he said he voiced his desire to make changes to its late-stage section. Rather than consider his suggestions, Dr. Donta said committee member Robert Nadelman, MD, informed him that unanimity was not required for publication, and Donta's name was removed from the protocol without explanation. For reasons that remain unclear, the protocol was taken from committee chair Benjamin Luft, who Donta believes wanted to make changes to its late stage section, and given to Dr. Gary Wormser, an insurance consultant (Aetna) who took over as IDSA chair during the reorganization of the committee. Dr. Donta previously told LymeLight he believed the IDSA meetings "were based on politics, not science" and that when the guidelines were published, they would be "an embarrassment to the Society." Dr. Luft did not return messages to discuss the protocol.
Documents obtained by the LDF support Donta's conclusion. In a October 1995 e-mail, former NIH Lyme Disease Program Officer Edward McSweegan (who was removed from his position), tells new NIH Lyme Disease Program Officer Phil Baker that the American College of Physicians (ACP) and IDSA are currently working on Lyme disease diagnostic and treatment protocols. McSweegan says Dan Rahn, who was in charge of CDC-funded ACP protocol and an IDSA member for the LD protocol, is "supposed to be talking with" IDSA chair Benjamin Luft, MD to "avoid duplication incompatibility." Rather than "copy the wheel," (presumably by writing a third identical protocol), McSweegan suggests NIH find a way "to support the current efforts or provide some kind of endorsement for them."
Adding further suspicion of collusion to establish one specific protocol for LD diagnosis and treatment is a portion of the book "Lyme Disease" authored by IDSA-committee membr Dan Rahn,M.D., M.P.H., and Yale physician Janine Evans, M.D., and the American College of Physicians. Page 199 of the book states: "Nationwide, efforts are well underway to limit practice variation, reduce unnecessary health care expenditures, and measure and improve patient outcomes." Not only might this pertain to avoiding "duplication incompatibility" on authoritative LD protocols, but also one must wonder its relevance to the nationwide harassment of physicians by state health departments against doctors who deviate from "authoritative" protocols such as the IDSA's and treat beyond their recommendations.
Reached at his office at the Medical College of Georgia (MCG), Dr. Rahn, Chair of the MCG-Blue Cross/Blue Shield Center of Health Care Improvement, said no effort was made to coordinate protocols and that the paragraph in question simply pertains to analyzing if Lyme patients are receiving "the known best practice by leading authorities" for diagnosing and treating LD. As an example, Rahn cited "Quality of Medical Care Delivered to Medicare Beneficiaries" a study in the October issue of Journal of American Medical Society (JAMA 2000;284:1670-1676). The study analyzes quality of care Medicare recipients receive for primary prevention, secondary prevention and/or treatment of 6 medical conditions (e.g. stroke) for which there is "strong scientific evidence and consensus that the process of care either directly improves outcomes or is a necessary step in a chain of care that does so." In light of polarized medical and scientific communities over the diagnosis/treatment and clinical spectrum of LD and ongoing NIH studies examining the issue of chronic LD, it seems such a study for Lyme cannot be done on a scientific basis.
Likewise, efforts to "standardize" diagnosis and treatment protocols would be, at best, premature. Though Rahn cited the JAMA study as an example what his book referred to, he offered no specifics as to what similar studies may have been "well underway" when the book was published in 1997.
It is such suggestions as Dr. Rahn's that make many Lyme doctors such as New Jersey physician Anthony Lionetti irate. "Right now, it is impossible to formulate any protocol for Lyme that goes beyond early stage disease," Lionetti said. "Thousands of treated patients experience persisting symptoms despite 28-days of treatment. How can we standardize their treatment when there is not one double-blinded, controlled study that examines how they respond to additional antibiotic therapy." Lionetti estimates he has treated over 1,000 late-stage Lyme patients. For the majority of those, he prescribes a maximum of eight weeks of intravenous antibiotic therapy and estimates the success rate by treating with such duration is "about eighty to ninety percent."
New York State Office of Professional Medical Conduct's trial against East Hampton doctor Joeseph Burrascano, Jr., on charges of overdiagnosis/treatment of LD and its revocation of Long Neck Lyme specialist Perry Orens, MD, last year exemplifies the "chilling" impact Liegner and others believe the protocol will have on Lyme docs who aggressively treat late-stage LD. After leaving Burrascano's case open for over six years, OPMC informed him just weeks after the protocol was first released in late August that they will proceed with their case against him. The opening date of his trial took place October 26. LDF chair Karen Vanderhoof-Forschner anticipates the IDSA protocol will be among the primary evidence used against Burrascano.
Though Burrascano cannot reveal the specific charges against him, media reports state the charges include overdiagnosis and overtreatment of LD. The case represents a pivotal chapter in the Lyme disease controversy, as Burrascano is perhaps the most vocal, respected and influential physician who recognizes and aggressively treats LD. With his Lyme disease diagnosis and treatment protocol published in Conn's Current Therapy (Rakel, 1997), many Lyme-literate doctors rely on his guidelines to diagnose and treat LD.
Should Burrascano lose his case, the ever-shrinking list of doctors willing to aggressively treat patients who remain symptomatic after "conventional" short-term therapy because of unscientific protocols such as the IDSA's is sure to become even shorter.
And the implications of that go far beyond chilling.
Posted by bulldog2 on February 16, 2009, at 8:24:02
In reply to Re: No Evidence For Chronic Lymes Disease, posted by bleauberry on February 15, 2009, at 18:58:31
> You have to read the article closer. It doesn't say what you are claiming. Not at all. You read stuff into it that isn't there.
>
> I found myself rebutting almost every sentence.
>
> There were a hundred or more points to clarify. Here is just one of those hundred...
> He talks about Chronic Lyme as a recurring infection after the initial antibiotic treatment is completed.
>
> That represents a very small minority of people with Lyme disease. Most people with Chronic Lyme are people that were never diagnosed in the first place and never had antibiotics after a tick bite, either because they didn't know they had been bitten or didn't know it was something that required attention. The author is not talking in this article about this vast majority of Lyme patients who never had any kind of treatment.
>
> I agree with his view on IV antibiotics. Not a good route.
>
> What Chronic Lyme Disease means is...it was never recognized and never treated in the early stage and has been allowed to progress into a stubborn longterm illness.
>
> Another problem...he says the success of antibiotics is "anecdotal". Who the heck cares except for a mathematician? Is your job to get people well or push numbers on a desk?
>
> All we know for sure is that tens of thousands of people who had clinical symptoms of Lyme, had tick exposure, have not had great success with other medications, not great success with other doctors, not great success in psychiatry, tested negative on the unreliable lab tests for Lyme, were labelled with mystery names such as Fibromyalgia, Chronic Fatigue Syndrome, Depression, Anxiety, and MS (just a pitiful way of mankind to say "we don't know what's wrong with you, but something is wrong, and we'll call it this")....well, a stunning majority of these people either improved significantly or become completely cured on well-chosen specific oral antibiotics.
>
> That's all we know for sure. The author wants to wait for scientifically designed trials to show what is already happening in the real world. Sorry doc, while you drive your Porche and take Carribean vacations saying evidence on Lyme is only anecdotal, patients of OTHER docters are experiencing what you should be doing with yours...getting well.
>
> There is a Lyme expert much greater than this author. His name is Dr Sam Donta of Boston General Hospital and Medical Center. The many articles and successes he has had put this author's views to shame.
>
> It is very dangerous and misleading to cherrypick information, such as basing an opinion on one viewpoint, one source, or one misread sentence. One has to look at the entire body of evidence, pros and cons equally, to make an informed personal judgement that has any sense of wisdom attached to it.You are wrong about chronic lyme's. It can also mean after treatment with antibiotic that some bacteria remain and harbor in the body and continue to cause symtoms on and off for eternity.
As far as never being treated. If you test positive on Elisa or Western blot than get treated. If you don't test positive than I wouldn't get treated. Our bodies do have immune systems that are capable of fighting of pathogens.We are invaded by bacteria every day and fight them off.
Posted by bulldog2 on February 16, 2009, at 8:32:36
In reply to Re: No Evidence For Chronic Lymes Disease, posted by bleauberry on February 15, 2009, at 18:58:31
> You have to read the article closer. It doesn't say what you are claiming. Not at all. You read stuff into it that isn't there.
>
> I found myself rebutting almost every sentence.
>
> There were a hundred or more points to clarify. Here is just one of those hundred...
> He talks about Chronic Lyme as a recurring infection after the initial antibiotic treatment is completed.
>
> That represents a very small minority of people with Lyme disease. Most people with Chronic Lyme are people that were never diagnosed in the first place and never had antibiotics after a tick bite, either because they didn't know they had been bitten or didn't know it was something that required attention. The author is not talking in this article about this vast majority of Lyme patients who never had any kind of treatment.
>
> I agree with his view on IV antibiotics. Not a good route.
>
> What Chronic Lyme Disease means is...it was never recognized and never treated in the early stage and has been allowed to progress into a stubborn longterm illness.
>
> Another problem...he says the success of antibiotics is "anecdotal". Who the heck cares except for a mathematician? Is your job to get people well or push numbers on a desk?
>
> All we know for sure is that tens of thousands of people who had clinical symptoms of Lyme, had tick exposure, have not had great success with other medications, not great success with other doctors, not great success in psychiatry, tested negative on the unreliable lab tests for Lyme, were labelled with mystery names such as Fibromyalgia, Chronic Fatigue Syndrome, Depression, Anxiety, and MS (just a pitiful way of mankind to say "we don't know what's wrong with you, but something is wrong, and we'll call it this")....well, a stunning majority of these people either improved significantly or become completely cured on well-chosen specific oral antibiotics.
>
> That's all we know for sure. The author wants to wait for scientifically designed trials to show what is already happening in the real world. Sorry doc, while you drive your Porche and take Carribean vacations saying evidence on Lyme is only anecdotal, patients of OTHER docters are experiencing what you should be doing with yours...getting well.
>
> There is a Lyme expert much greater than this author. His name is Dr Sam Donta of Boston General Hospital and Medical Center. The many articles and successes he has had put this author's views to shame.
>
> It is very dangerous and misleading to cherrypick information, such as basing an opinion on one viewpoint, one source, or one misread sentence. One has to look at the entire body of evidence, pros and cons equally, to make an informed personal judgement that has any sense of wisdom attached to it.You should read the book By Dr. John Sarno called "healing your back" "the mind body connection". You may have TMS. It's just not about back pain but fibromyalgia and a host of other pain symtoms.
I still maintain that if you don't test positive on at least one of the Lyme's Tests and proceed with long term antibiotic therapy you are going into murky waters.
Posted by Glydin 3.9 on February 17, 2009, at 4:57:43
In reply to Re: No Evidence For Chronic Lymes Disease, posted by bulldog2 on February 16, 2009, at 8:32:36
Posted by bleauberry on February 17, 2009, at 18:03:47
In reply to Re: No Evidence For Chronic Lymes Disease, posted by bulldog2 on February 16, 2009, at 8:24:02
>
> You are wrong about chronic lyme's. It can also mean after treatment with antibiotic that some bacteria remain and harbor in the body and continue to cause symtoms on and off for eternity.True. Very deceptive organism it is. It hides and mutates well. That's why some people need to "pulse" their antibiotics and others may need maintenance doses for life to keep the organisms in "jail". Neither of these methods were tested. So while they work miracles in the real world, they haven't been done by pinhead scientists.
>
> As far as never being treated. If you test positive on Elisa or Western blot than get treated. If you don't test positive than I wouldn't get treated.Totally false. The above tests are only accurate about 40% of the time. Today's medical profession does not have a reliable test. Those tests are also only specific to a particular pathogen, not all of the dozens of mutations and co-infectors that have been identified.
If you have symptoms, test negative, but every other alternative cause has been throughly ruled out, you have to try Tetracycline. Simply as a diagnostic tool if nothing else.
>Our bodies do have immune systems that are capable of fighting of pathogens.We are invaded by bacteria every day and fight them off.
If this were true, then I could name off about a dozen common diseases that are pathogen based, such as sexual diseases as just one example, in which the immune system failed. Our immune system is pretty good, but it is no match for certain pathogens.
Posted by bleauberry on February 17, 2009, at 18:51:23
In reply to No Evidence For Chronic Lymes Disease, posted by bulldog2 on February 15, 2009, at 10:33:06
I truly appreciate everyone's passion on the Lyme subject. It is admittedly frustrating to see a low level of understanding of this intricate disease however.
And please, when we speak of Lyme disease, understand we are not talking about a bacteria. Lyme is an illness that results from the bite of a tick. This includes infection not only from Borrelia burgdorfen (Bb), but the many co-infections that also result. Furthermore, in the chronic form of Lyme, other factors take on an even more significant role - immune dysfunction, opportunistic infections, co-infections, biological toxins, metabolic and hormonal imbalances, and deconditioning. These other conditions can be the leftover ruins even after the original bacteria were killed, thus the name chronic Lyme disease. The damage was already done and there is a battlefield to clean up.
I would love to spend hours educating everyone on the controversies, diagnostics, treatments, prognosis, and physiology of Lyme and its Lyme-like co-infectors, but the geniuses who actually heal people every day do it so much better.
If, and only if, you truly want to learn more about the intricate topic of Lyme, one needs to ignore any literature older than 2007. Advances have happened in leaps and bounds in the last two years that make most of everything before that antiquated.
Advanced Topics In Lyme Disease...do a google search for the name Joseph J. Burrascano Jr, MD. He does an excellent job of discussing the controversies of Lyme, both sides, and all the details that you are not presently aware of as evidenced by your posts.
Dr Sam Donta, Head of Infectious Diseases Boston General Hospital. Type his name in a google search. Read whatever you find. People have flown from Alaska to be treated by him because, simply put, he gets people well when the other pinheads and MDs misunderstood the nature of Lyme.
My own doctor...Dr Rex G Carr. Type his name in a google search. He has a regionwide reputatation of getting people well.
The controversy of Lyme is passionate. It was also that way when everyone believed ulcers were caused by stress and then some wise guy came along and said it was a bacteria that caused ulcers. No proof. Anecdotal. Laughed him down. Of course now we know the wise guy was right after all.
The same scenario is being repeated with Lyme. The medical profession and scientific pinheads are the last ones to accept new truths.
Other references to round out your newfound expertise on Lyme:
The International Lyme and Associated Diseases Society. The "associated diseases" part is REAL important. It gives a hint to the intricacies of this infection. It aint just a simple everyday bacteria that any immune system can knock down. I can think of a dozen other serious illnesses that are caused by pathogens that our immune systems cannot knock down. We do have good immune systems, but some bugs are just a lot better at what they do than what we do.
Heck, even my local Nurse Practioner knows it is common knowledge how faulty the current lab tests are for accurate diagnosis of Lyme. I'm surprised people are uninformed enough to believe these tests are like Bibles. I mean, come on. Learn about this stuff before you debate it folks.
Lymenet.org has good info too.
Whatever you look at, make sure it is 2008 or newer.
For those who are Lyme skeptics, I agree with them on one thing, as does my doctor Dr Carr...IV antibiotics are rarely if ever justified or needed.
I wouldn't even have spent the time on this thread except that I am deeply aware of how guilty this disease is of causing stubborn psychiatric diseases that defy common treatments.
Posted by Garnet71 on February 17, 2009, at 19:59:39
In reply to Advanced Topics In Lyme Disease, posted by bleauberry on February 17, 2009, at 18:51:23
Thanks for all the info, Bleauberry. I really wish I could go to an infectuous disease md for opinions, but I lost my health insurance.
Sam Donta's website has a lot of information; I bookmarked it. Anytime I brought up Lyme to my doctors they just dismissed it, although the last one prescribed the tests--which appear to not really matter anyway, and still pending results. Its most likely a coincidence, but I was so healthy and sharp, even had an amazing memory before I joined the military, then spent time in the Lyme-infested woods several times a year, and ticks were brought back into the office from others who were out there too....like when I was sitting working in an office chair the time I noticed the tick in the back of my leg (I had a skirt on)....Anyway, I have gone downhill ever since. I wonder.
A few years ago, I could have NEVER imagined that this would be me today.
Posted by Phillipa on February 17, 2009, at 19:59:57
In reply to Advanced Topics In Lyme Disease, posted by bleauberry on February 17, 2009, at 18:51:23
BB it's a shame Rose who published the newsletter from lyme.org died of this illness. Her husband has it as well. Each country has different forms of the bacterias. In NC last year a new strain was found and was on the news. Interesting also that when the Lymes found that's when my thyroid went. So since it's autoimmune my immune systom isn't strong anymore. Phillipa ps I sure wish I saved some of the daily newsletters I don't think I did but hey I have a file from Sandy and saved some links she sent me. Will post when find
Posted by SLS on February 18, 2009, at 6:54:35
In reply to Advanced Topics In Lyme Disease, posted by bleauberry on February 17, 2009, at 18:51:23
Hi BB.
Thanks for this. I really didn't have the energy to chime in and write something as important as you did here. I am in complete agreement with you. My doctor treats psychiatric Lyme suffers and has even written treatises about it. I have seen some Lyme sufferers become bound to wheelchairs - literally one step at a time - long after the primary infection has been treated with antibiotics.
I don't know that this site will be as comprehensive as your post, but I found it several years ago, and it looked good to me.
- Scott*********************************************************
> I truly appreciate everyone's passion on the Lyme subject. It is admittedly frustrating to see a low level of understanding of this intricate disease however.
>
> And please, when we speak of Lyme disease, understand we are not talking about a bacteria. Lyme is an illness that results from the bite of a tick. This includes infection not only from Borrelia burgdorfen (Bb), but the many co-infections that also result. Furthermore, in the chronic form of Lyme, other factors take on an even more significant role - immune dysfunction, opportunistic infections, co-infections, biological toxins, metabolic and hormonal imbalances, and deconditioning. These other conditions can be the leftover ruins even after the original bacteria were killed, thus the name chronic Lyme disease. The damage was already done and there is a battlefield to clean up.
>
> I would love to spend hours educating everyone on the controversies, diagnostics, treatments, prognosis, and physiology of Lyme and its Lyme-like co-infectors, but the geniuses who actually heal people every day do it so much better.
>
> If, and only if, you truly want to learn more about the intricate topic of Lyme, one needs to ignore any literature older than 2007. Advances have happened in leaps and bounds in the last two years that make most of everything before that antiquated.
>
> Advanced Topics In Lyme Disease...do a google search for the name Joseph J. Burrascano Jr, MD. He does an excellent job of discussing the controversies of Lyme, both sides, and all the details that you are not presently aware of as evidenced by your posts.
>
> Dr Sam Donta, Head of Infectious Diseases Boston General Hospital. Type his name in a google search. Read whatever you find. People have flown from Alaska to be treated by him because, simply put, he gets people well when the other pinheads and MDs misunderstood the nature of Lyme.
>
> My own doctor...Dr Rex G Carr. Type his name in a google search. He has a regionwide reputatation of getting people well.
>
> The controversy of Lyme is passionate. It was also that way when everyone believed ulcers were caused by stress and then some wise guy came along and said it was a bacteria that caused ulcers. No proof. Anecdotal. Laughed him down. Of course now we know the wise guy was right after all.
>
> The same scenario is being repeated with Lyme. The medical profession and scientific pinheads are the last ones to accept new truths.
>
> Other references to round out your newfound expertise on Lyme:
>
> The International Lyme and Associated Diseases Society. The "associated diseases" part is REAL important. It gives a hint to the intricacies of this infection. It aint just a simple everyday bacteria that any immune system can knock down. I can think of a dozen other serious illnesses that are caused by pathogens that our immune systems cannot knock down. We do have good immune systems, but some bugs are just a lot better at what they do than what we do.
>
> Heck, even my local Nurse Practioner knows it is common knowledge how faulty the current lab tests are for accurate diagnosis of Lyme. I'm surprised people are uninformed enough to believe these tests are like Bibles. I mean, come on. Learn about this stuff before you debate it folks.
>
> Lymenet.org has good info too.
>
> Whatever you look at, make sure it is 2008 or newer.
>
> For those who are Lyme skeptics, I agree with them on one thing, as does my doctor Dr Carr...IV antibiotics are rarely if ever justified or needed.
>
> I wouldn't even have spent the time on this thread except that I am deeply aware of how guilty this disease is of causing stubborn psychiatric diseases that defy common treatments.
>
Posted by Phillipa on February 18, 2009, at 20:16:40
In reply to Re: Advanced Topics In Lyme Disease » bleauberry, posted by SLS on February 18, 2009, at 6:54:35
Thank you Scott signed up for the newsletter and finally found answer to my question in writing that a Western Blot can stay positive and doesn't mean you have active lymes. Thanks so much searched everywhere. Love Phillipa
Posted by bulldog2 on February 21, 2009, at 7:12:08
In reply to Re: Advanced Topics In Lyme Disease » SLS, posted by Phillipa on February 18, 2009, at 20:16:40
> Thank you Scott signed up for the newsletter and finally found answer to my question in writing that a Western Blot can stay positive and doesn't mean you have active lymes. Thanks so much searched everywhere. Love Phillipa
I have told you that many times in the past. Apparently you forgot.
Posted by bulldog2 on February 21, 2009, at 7:13:05
In reply to Re: No Evidence For Chronic Lymes Disease, posted by bleauberry on February 15, 2009, at 18:58:31
> You have to read the article closer. It doesn't say what you are claiming. Not at all. You read stuff into it that isn't there.
>
> I found myself rebutting almost every sentence.
>
> There were a hundred or more points to clarify. Here is just one of those hundred...
> He talks about Chronic Lyme as a recurring infection after the initial antibiotic treatment is completed.
>
> That represents a very small minority of people with Lyme disease. Most people with Chronic Lyme are people that were never diagnosed in the first place and never had antibiotics after a tick bite, either because they didn't know they had been bitten or didn't know it was something that required attention. The author is not talking in this article about this vast majority of Lyme patients who never had any kind of treatment.
>
> I agree with his view on IV antibiotics. Not a good route.
>
> What Chronic Lyme Disease means is...it was never recognized and never treated in the early stage and has been allowed to progress into a stubborn longterm illness.
>
> Another problem...he says the success of antibiotics is "anecdotal". Who the heck cares except for a mathematician? Is your job to get people well or push numbers on a desk?
>
> All we know for sure is that tens of thousands of people who had clinical symptoms of Lyme, had tick exposure, have not had great success with other medications, not great success with other doctors, not great success in psychiatry, tested negative on the unreliable lab tests for Lyme, were labelled with mystery names such as Fibromyalgia, Chronic Fatigue Syndrome, Depression, Anxiety, and MS (just a pitiful way of mankind to say "we don't know what's wrong with you, but something is wrong, and we'll call it this")....well, a stunning majority of these people either improved significantly or become completely cured on well-chosen specific oral antibiotics.
>
> That's all we know for sure. The author wants to wait for scientifically designed trials to show what is already happening in the real world. Sorry doc, while you drive your Porche and take Carribean vacations saying evidence on Lyme is only anecdotal, patients of OTHER docters are experiencing what you should be doing with yours...getting well.
>
> There is a Lyme expert much greater than this author. His name is Dr Sam Donta of Boston General Hospital and Medical Center. The many articles and successes he has had put this author's views to shame.
>
> It is very dangerous and misleading to cherrypick information, such as basing an opinion on one viewpoint, one source, or one misread sentence. One has to look at the entire body of evidence, pros and cons equally, to make an informed personal judgement that has any sense of wisdom attached to it.Beware of quack lyme's doctors!!!!
Posted by SLS on February 21, 2009, at 7:59:12
In reply to Re: No Evidence For Chronic Lymes Disease, posted by bulldog2 on February 21, 2009, at 7:13:05
> Beware of quack lyme's doctors!!!!
I bet there are quite a few.
What a shame.
- Scott
Posted by Phillipa on February 21, 2009, at 19:59:03
In reply to Re: Advanced Topics In Lyme Disease, posted by bulldog2 on February 21, 2009, at 7:12:08
No I did not forget. I was finally supplied the necessary references I needed in writing. When in the hospital for a month and treated with pic line rocephin only for a week as yes did have the hex reaction the doc thinks here as jerking muscles. So line removed and placed on orals. Thanks again Scott for providing what I needed. Phillipa
Posted by bleauberry on February 22, 2009, at 10:20:59
In reply to Re: No Evidence For Chronic Lymes Disease, posted by bulldog2 on February 21, 2009, at 7:13:05
>
> Beware of quack lyme's doctors!!!!
>
> http://www.quackwatch.org/01QuackeryRelatedTopics/lyme.htmlDefinitey beware. Quack MDs are everywhere. I find them mostly in the family practioners and psychiatrists. You know, those doctors with many people in the waiting room (a sign of that doctor's patients not getting well and the resulting revolving door effect), MDs who rush you in and out, have a prescription pad in hand within minutes, and paste some label on you without doing diligent work to rule out alternative causes for your symptoms.
Quackwatch, by the way, is in my opinion not a reliable site at all. Do you remember I mentioned "cherrypicking" information? They are pros at that. They demonstrate expertise in choosing just the right evidence to show their case, enough evidence to "suggest" they are looking at all the opposing evidence (though they are not), and leave the reader absolutely convinced by the cleverly crafted scenario. That being said, they should defininetly be one of your sources of information, which brings me to the next paragraph...
The best way to come to an opinion is not to let someone else do it for you. Instead, go into any topic with a neutral open mind. Read everything you can find. Quackwatch would be just one of perhaps 50 different things you read. Take in an equal amount of sources that support the topic and an equal amount that oppose the topic. In other words, become an expert on both sides in your own right. Not the result of someone else's homework, but the result of your own, which is probably going to be much more thorough since you went into it unbiased and neutral.
By the time this research process is completed, in which you have been playing the role of an impartial judge all along, you will have formed your own concrete opinion that you can be proud of, and you can then render a verdict. You can even come to the common conclusion, "We just don't know enough at this time to fully understand the comlexities, but with what we do know I tend to believe, for now,..."
As for LLMD quacks, those would probably more likely be some of the naturopath LLMDs and fewer of the MD LLMDs. Full fledged MDs are just under a lot more regulational scrutiny. They are more closely watched and punished for improper treatments. Even so, as I said, there are quacks in every profession, every arena of medicine, and every hospital. We should always beware of quacks in any corner of our lives.
I was afraid of any ole doc to help me with a suspected infectious disease. So I became a member of several forums that specialize in it. At them, I requested names of the best doctors. The names I got were few, six actually, in all of New England. Three of those names came to me from more than just one forum. So I had some overlapping confirmation. The folks that gave me the names are former and current patients. Who better to judge whether a doc is a quack or a pro?
Current and former patients spoke so highly of two of the doctors I narrowed my list down to. "Saints" is what they were referred as. I doubt anyone with any sense of quackness would get that kind of reputation.
Hey, did you read any of the info SLS gave, and the names I gave? Sam Donta, Boston General? International Lyme And Associated Disease Society? My own doc, Rex Carr? Any of it? You kind of have to if you want to be an expert, because reading quackwatch won't make anyone an expert. You need the whole picture to make an informed decision. The names above actually get people healed from mysterious diseases no one else can figure out. Quackwatch is not in the healing business.
Unforutnately many of us are so ill we don't have the strength to guard against quacks, seek experts rather than quacks, or know a quack when we see one. That is evidenced clearly on this board day after day.
Posted by Phillipa on February 22, 2009, at 21:09:07
In reply to Re: No Evidence For Chronic Lymes Disease, posted by bleauberry on February 22, 2009, at 10:20:59
BB was thinking why would the health dept call if only IGG or IGM were not both present. Haven't searched your doc will. And as a favor could you check out the ob-gyn that's here and deals with bioidentical hormones. Wrote a book sold out on Amazon The Youth Link by Ronald L. Brown MD. Have appointment end of April booked til then he feels that depression and anxiety are hormone related. Has a website but the primary one is in the process of being updated the second site Exective does work not much infor would you have a look. www.carolinahealthspan.com. This is the one that is being updated the one below can be accessed. thanks Love Phillipa
Posted by jcntrbr on August 17, 2013, at 10:07:25
In reply to Re: Advanced Topics In Lyme Disease » bleauberry, posted by SLS on February 18, 2009, at 6:54:35
I am a Lyme Disease sufferer. I was on a vacation around 2000, my wife noticed a black spot on me, it was a tick. we pulled the tick off and pretty mych continued our vacation. It was about a week or so later I had a ring around the bite, I was a little concerned but when the circle was gone and I had no reaction to it, I thought the problem was gone. I have been sick for about 12 years sometimes I couldn't function at all. I have been to so many Drs. and specialist and I have had so many MRI's and CT scans and radio active injections that I wonder if I glow in the dark.
I stumbled onto a Doctor in Hanover,NH about a year ago today Dr. Rex Carr. I drive 90 miles each way to see him, I make my appointments on time even during the worst winter conditions Vermont and New Hampshire can throw at anyone.
I do not resemble the person that I was 12 months ago however I also know that I have issues that will not go away, Lyme arthritis is painful. I have actually diagnosed 2 other people that I know that have had simular symtoms and I have 2 other people that will be seeing Dr. Carr.
I can't say enough about Dr. Carr, I am so glad that I stumbled accidently on one of the best Doctors that New England has to offer on Lyme.
This is the end of the thread.
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