A rather opinionated reader made me aware of a disturbing issue. In Connecticut–the state whose city of Lyme gave the name to the tick-borne disease–the Attorney General decided that the nation’s foremost infectious disease experts have their heads up their arses. Apparently responding to pressure from questionable advocacy groups, the AG launched an “investigation” into the Infectious Disease Society of America’s Lyme disease treatment guidelines. The excuse for the investigation was alleged anti-trust violations.

Let’s step back a little. As discussed yesterday, there is some controversy surrounding so-called “chronic Lyme disease”. The overwhelming majority of experts agree that there is no role for long-term antibiotics. There has been no evidence to support either the diagnosis of chronic Lyme disease (as it is used by advocacy groups and some physicians) or the use of expensive and dangerous therapies to treat it. The guidelines on treatment of infectious diseases issued by the ISDA are just that—guidelines. Physicians are not required to follow these guidelines, but insurance companies often use them to determine what therapies they will pay for. These guidelines are, however quite influential, as we physicians count on our specialist colleagues to help sort out these difficult issues.

The CT AG decided that these guidelines were tainted by anti-trust violations. I’m not sure how evidence-based guidelines put together by a diverse group of experts can violate anti-trust laws, which were designed to prevent corporate monopolies, but the AG tried to pull it off.

More below the fold—>

Among the accusations: (See both the AG’s report and the IDSA’s response.)

1) The IDSA allowed for conflict of interest on the panel. This is both untrue, not mandated by law (apparently), and prima facie ridiculous. The panel recommended against expensive treatments—cui bono?

2) The panel failed to take into account divergent opinions. The panel did consider all of the evidence. Just because they disagreed with the fringe opinions doesn’t mean they didn’t consider them.

3) The panel’s recommendations were suspiciously similar to other medical society’s opinions (the American Academy of Neurology). So if medical experts agree on an issue, it’s an anti-trust violation rather than scientific consensus.

The good news is that the CT AG and the IDSA have reached an agreement. The current Lyme guidelines will stand, the IDSA will reevaluate them independently, and the Attorney General will leave them alone.

This troubles me, and it should trouble you. When a state government tries to strong-arm physicians and scientists to bring science more in line with the opinions of special interest groups, science-based medicine is in danger, and so are you.

Comments

  1. #1 SES
    May 21, 2008

    All I can say is “Yikes!”

  2. #2 Ben_Wraith
    May 21, 2008

    This is saddening. Living in Connecticut I was always rather impressed with some of the things our AG does like calling out Best Buy on fake web pages, so it’s disappointing to see him go against science.

  3. #3 daedalus2u
    May 21, 2008

    This is very scary. The same stuff as is happening in Kenya could happen here.

    http://news.bbc.co.uk/2/hi/africa/7413268.stm

    With the CT Attorney General running witch hunts, no one is safe.

    Low NO does strange things to people. I think that it is one of the things that leads to acute psychosis during metabolic stress, such as during hypoglycemia, hyperpyrexia, roid rage, alcohol abuse (hypoglycemia), stimulant abuse, solvent huffing and postpartum psychosis. In many people (maybe even most, but not all) the psychosis may be violent. I did blog about it in the context of postpartum psychosis.

    http://daedalus2u.blogspot.com/2007/08/low-nitric-oxide-acute-psychosis.html

    People suffering from low NO may have their judgment clouded by their low NO. They won’t realize it because one of the things that low NO can do is induce delusions. The “runner’s high” is an example of this, it is the delusion that one is not tired.

  4. #4 Suricou Raven
    May 22, 2008

    I am reminded of a similar case. I am recalling it from a book I read a while ago, so I cannot remember the details – ask google for names and dates. It involves a distributor of blood – this was before the HIV panic, but even then doctors could recognise high-risk blood. This distributer got his supplies from the worst sources – paid donation from poor districts, largely drug addicts. Cheap, but not safe. Eventually an organisatation of doctors caught on to this and circulated a warning to the medical community not to purchase blood from that distributor, because it was at high risk of carrying disease.

    The distributer sued them for something similar to antitrust – he claimed they were conspiring to drive him out of business, an illegally anticompetative act. The doctors admitted that they had been informing each other not to buy from this particular distributor, and the judge ruled against them – they were ordered to buy from the tainted blood source.

    I can’t remember more than that, but the book I read of it in is ‘Blood: An Epic History of Medicine and Commerce”

  5. #5 CTPatriot
    May 22, 2008

    Dr. Lipson…

    The reason this action by Blumenthal disturbs you and your readers is because you have all accepted the narrative that basically goes like this: “academic researchers and their associations are smart and well intentioned and patients are stupid and interfere with science.”

    Unfortunately, let’s suppose hypothetically that a small and powerful group of academics who control literally every facet of an illness, from the guidelines that are used to diagnose and treat it, to the peer review committees at major medical journals, to the decision making process regarding that illness at NIH, CDC and IDSA. Let’s also assume that these academics have serious conflicts of interest with the insurance industry, testing labs, etc. which bias their results in a manner that prevents a subset of patients from receiving treatment for that illness which has proven successful for them.

    Let’s further assume that some of those patients were also academics, doctors and other highly educated types who gathered the available research and even produced some of their own, coming to a vastly different conclusion than the former group did — conclusions supported by peer reviewed science.

    Now let’s assume that the former group has chosen to enforce their control over that illness by going after the licenses of every doctor who challenges their guidelines, by attacking them in the media at every opportunity, and by ridiculing the patients who have been made well through the efforts of those doctors after being failed by the former doctors.

    Let’s further assume that it is difficult if not impossible to get opposing research funded because of the influence of the academics in the former group, and it is even more difficult to get opposing research published in the major US journals because these same academics sit on their peer review committees.

    If you are a member of the latter group, what exactly are you supposed to do in order to see that the science surrounding your illness is conducted in an unbiased manner? How are you supposed to be able to receive the treatment that has worked for you when a powerful group of academics is helping to cut off your insurance and take away your doctors?

    When the medical establishment has become corrupted by corporate influence, where else is a patient supposed to turn than to those who make the rules that academics and doctors are allowed to play by? Do you think that people with MD’s and PhD’s deserve to be held to some other standard than the rest of us? Do you think that crimes committed by doctors can only be judged by other doctors?

    For those who are too thick to understand, let me state it this way – conflict of interest that affects the research conducted by a doctor/academic IS A POLITICAL PROBLEM. And while it may take a medical professional to adequately judge whether someone’s research is biased, a smart attorney general would surely gain the advice of various medical professionals during the course of examining the political issues that surrounded that research. I can guarantee you that Attorney General Blumenthal did just that.

    And his settlement, more than anything, should prove to you that he had no interest whatsoever in using his office to dictate to any doctor what their research should conclude or what their treatment protocols should entail. What he DID determine, however, was that there were significant conflicts of interest by authors of the IDSA guidelines which may have biased their conclusions. The best way of rectifying that, according to the settlement, was to have the guidelines reviewed under the auspices of a noted medical ethicist and a medical panel which was free of conflicts of interest.

    What could possibly be wrong with having a panel of one’s peers take a second look at their work? I would think that any scientist without anything to hide and who is dedicated to the truth would welcome the scrutiny of his peers.

  6. #6 SLC
    May 22, 2008

    Re CTPatriot

    The problem with Mr. CTPatriots’ comment is that the stance taken by the ISDA is counter to the interests of the pharmaceutical companies in that it recommends against long term use of antibiotics to treat the alleged chronic Lyme disease syndrome. Thus, what is the conflict of interest here?

  7. #7 Rev. BigDumbChimp
    May 22, 2008

    conclusions supported by peer reviewed science.

    You’ve piqued my interest.

    Can you provide links to said peer reviewed studies?

  8. #8 PalMD
    May 22, 2008

    I forgot to give you folks one of the citations, I think.
    This NEJM article is available for free, and has good citations.

  9. #9 Lambert
    May 22, 2008

    @ Rev. BigDumbChimp

    Don’t hold your breath. The full paragraph of course is…

    “Let’s further assume that some of those patients were also academics, doctors and other highly educated types who gathered the available research and even produced some of their own, coming to a vastly different conclusion than the former group did — conclusions supported by peer reviewed science.”

    And of course we all know what “assume” does (and CTPatriot does an awful lot of assuming) – makes an Ass out of u and me.

    As for being a Connecticut Patriot. Isn’t patriotism the younger cousin of religious faith? Don’t think, don’t question, just do what “they” tell you.

  10. #10 CTPatriot
    May 22, 2008

    “As for being a Connecticut Patriot. Isn’t patriotism the younger cousin of religious faith?”

    No, that is nationalism, you ass. A true patriot is someone who cares about his or her enough to try and make it a better place even when their actions may go against the prevailing government ideology. Of course, patriotism as practiced by today’s right wing is as you describe, the younger cousin of faith — the last refuge of a scoundrel.

    By the way, while I wrote “assume”, it is a fact that some of the doctors treating patients for chronic Lyme disease arrived at their methodologies and beliefs after either having experienced the illness firsthand, or through a family member and then having reviewed the available science themselves. It is also true that some of these doctors have published their findings in peer reviewed medical journals not to mention had their diagnostic and treatment guidelines endorsed and published by the same clearinghouse as the IDSA’s guidelines.

    To SLC: The conflict of interest is not with the pharmaceutical companies, but rather with the insurance industry, which does not want to pay for expensive longterm treatment. Insurance companies pay hundreds of dollars an hour (10 years ago it was as much as $650/hr) for doctors to render expert opinions against chronic Lyme diagnoses and treatment. It is not conjecture, but fact that some of the same academics who declare chronic Lyme disease to be non-existent also act as highly paid consultants for the insurance industry. That is just one of the conflicts of interest that would potentially bias their conclusions. Other conflicts are related to royalties received from lab test patents and things of that nature.

    Does anyone on this site engage in reasoned intelligent discussion or do you all prefer to simply smear people and fling insults instead?

  11. #11 CTPatriot
    May 22, 2008

    To Rev. Bigdumbchimp (love that ID) … here are a couple lists of peer reviewed science to support my claims:

    Persistence of infection: http://www.lymeinfo.net/medical/LDPersist.pdf

    Seronegativity:
    http://www.lymeinfo.net/medical/LDSeronegativity.pdf

  12. #12 CTPatriot
    May 22, 2008

    UGH! I left out the word “country” in the 2:17pm post above. My sentence should have read: A true patriot is someone who cares about his or her COUNTRY enough to try and make it a better place even when their actions may go against the prevailing government ideology.

  13. #13 PalMD
    May 22, 2008

    You may wish to read this on cherry picking data.

  14. #14 LanceR
    May 22, 2008

    let’s suppose hypothetically that a small and powerful group of academics who control literally every facet of an illness

    Conspiracy theory? Definitely a crank.

  15. #15 CTPatriot
    May 22, 2008

    Thanks for the link to your cherry picking data article. It is well done and describes perfectly the behavior of the chronic Lyme denialists I wrote about.

    If you were attempting to imply that the links I sent were cherry picking, you are absolutely wrong. I was asked to provide references that supported my stance and I did so. Those who believe chronic Lyme is real actually are far more inclusive and expansive in their review of the research. We can certainly have legitimate arguments over the validity of some of it, but so could we have those same arguments over the validity of the much narrower band of research looked at by the IDSA. If anyone has done the cherry picking, I promise you, it is they.

  16. #16 CTPatriot
    May 22, 2008

    Lance … it’s so much easier to simply dismiss people with smears than it is to investigate what they are telling you and determine whether it has any merit. I’d like to propose another definition for a crank – someone who is arrogant and intellectually lazy. Those type of cranks run around yelling “conspiracy theory” anytime someone confronts them with information that they can’t, won’t or don’t want to accept as possibly being factual. It’s a time honored technique used to marginalize and shut people up who harbor dissenting views so that you don’t actually have to address or debate those views.

  17. #17 Phyllis Mervine
    May 23, 2008

    Here is the story: a small, handpicked, exclusive group of people associated with a specialty medical society promulgate so-called “voluntary” treatment guidelines that are enforced through insurance company denials of care and state medical board prosecutions. Members of this group also have financial interests in government grants and test kits and vaccines and patents. They serve on peer-review boards and act as gatekeepers for who gets grants and what research is published. There is no oversight of this group and they are not accountable to anyone.

    Roughly half of the people treated under their guidelines remain sick. These patients, who may be as disabled as people with congestive heart failure, are now labeled as having post-treatment “syndrome” and further treatment is denied, constituting what is in effect officially sanctioned medical neglect. These very sick patients then consult other doctors who treat according to an alternative standard of care that cures most of them. A happy ending?

    No. The small, handpicked, exclusive group of guidelines authors feels their authority threatened. Their control is slipping. People with contrary views are asking for a seat at the table. Patient advocates are promoting legislation that might undermine their position of power. A state attorney general investigates them for possible antitrust violations. But does the specialty medical society consider an internal investigation of possible wrongdoing by the guidelines panel? No. They dig in their heels and swing into action, using all the tools at their disposal to defend their guidelines: lobbying, media, articles, blogs, editorials. Patients in wheelchairs take to the streets, waving signs and protesting outside legislative offices and scientific meetings. This is medicine in the 21st century.

    Lyme disease today – your disease tomorrow. Be afraid, be very afraid.

    Phyllis Mervine
    California Lyme Disease Association
    http://www.lymedisease.org

  18. #18 PalMD
    May 23, 2008

    Let’s try to remember that unfounded assertions are pretty meaningless. Data is more useful.
    I could assert that there is a conspiracy launched by the makers of ceftriaxone to make people believe in chronic lyme disease. It’s just as plausible as any other assertion. However, I have no data to support it, and it seems rather silly.

  19. #19 Emily
    May 23, 2008

    If you read the Attorney General’s decision, http://www.ct.gov/ag you will see that there is no medical determination being made.
    “Blumenthal’s findings include the following:

    The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;

    Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;

    The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee;

    The IDSA’s 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group’s position on chronic Lyme disease to achieve “consensus”;

    The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;

    The IDSA portrayed another medical association’s Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.”

    It does not require any medical training to make these determinations, only ethics.

  20. #20 Sharon H.
    May 23, 2008

    PALMD, the facts surrounding the chronic Lyme debate are pretty complicated, so you may want to hold onto your horses before making up your mind. I was surprised that, on a blog purporting to be about logic and backing one’s assertions with facts, you said you relied on “our specialist colleagues to help sort out these difficult issues.” It is understandable that you can’t analyze every medical journal article about every disease, but disappointing when you make editorial remarks on a particular disease without reading the science. I wouldn’t have thought you would support an “if it’s good enough for them, it’s good enough for me” approach. Since for many of us it was the difference between health and chronic illness, or even life and death, we read up on the science.

    Let’s start with definitions, because understanding what a disease is can change just by changing the meanings of key phrases. “Chronic Lyme,” for most of us, is synonymous with “persistent Lyme,” “neurological Lyme,” “late stage Lyme” and “tertiary Lyme” (http://www.nlm.nih.gov/medlineplus/ency/article/000669.htm , http://www.ninds.nih.gov/disorders/lyme/lyme.htm , and http://www.acponline.org/clinical_information/resources/lyme_disease/patient/glossary.htm , see the definition for “late Lyme disease”).

    Even the IDSA guidelines noted “There is no well-accepted definition of post-Lyme disease syndrome” (http://www.journals.uchicago.edu/doi/pdf/10.1086/508667, p.1094), thought they defined late Lyme disease as “arthritis, encephalopathy, encephalomyelitis, and peripheral neuropathy” (p. 1110) which sounds like what many call chronic Lyme. Rather than a rare phenomenon, they noted that Lyme arthritis (by their own definition, a late Lyme symptom) was reported in 1 in 4 surveillance cases (p. 1110).

    Instead of acknowledging chronic Lyme, the IDSA guidelines authors chose to redefine it, as “unexplained chronic subjective symptoms” (p. 1114). After ruling out possibilities such as reinfection, co-infection, slow resolution after treatment, and permanent damage, the guidelines suggest that, “In many patients, posttreatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tickborne coinfection” (p. 1115). There are always a few who claim to have a disease they do not, and I can imagine that such exist in Lyme disease as well; however, I cannot see any purpose for describing such a thing in treatment guidelines, except as an attempt to discredit the sick.

    Having spoken to probably dozens of people with late Lyme disease over the years, I can vouch that many have much more than subjective symptoms, and much more than “aches and pains.” In my own case, as a former professional dancer, I am all too aware of aches and pains, as they are part and parcel of a dancer’s life. I am insulted that a medical doctor would brush off my pain (which at times made me unable to walk) so cavalierly. And yes, my case clearly met all CDC guidelines for a reportable case of Lyme disease via mainstream lab testing.

    I will leave you with one last thought concerning the “experts” who wrote the IDSA Lyme guidelines. I for one would want anyone purporting to be an expert to be quite familiar with the advanced manifestations of the disease. But when it came to being acquainted with Lyme Encephalomyelitis, “Collectively, only 1 patient with encephalomyelitis has been diagnosed over the past 5 years by panel members” (p. 1110). As for peripheral neuropathy, not at all unusual in late-stage disease: “Only 9 such patients have been diagnosed by panel members…over the past 5 years” (p. 1111). Finally, for Lyme encephalopathy, a hallmark of chronic Lyme, the authors wrote, “Panel members…have diagnosed only 7 patients over the past 5 years” (p. 1111).

    Are you sure that these are the experts?

    Regards,
    Sharon H., MLIS

  21. #21 PalMD
    May 23, 2008

    Whoa, folks! I never said that Lyme disease in all its forms is non-existent…only that the so-called chronic Lyme disease, with no evidence of actual infection, does not respond to antibiotics, and that you cannot make a diagnosis of an infection with negative microbiology and serology, and that treating a non-existent infection with antibiotics is a good idea, and that the IDSA’s restating of the data is more reliable than a handful of wacko cranks with no significant data to support them.

  22. #22 David Thomas
    May 23, 2008

    So here’s my wish: When PalMD gets Lyme disease and fails the 2-4 weeks of antibiotics recommended by the tainted IDSA guidelines, and then goes on to develop disabling symptoms that are worse than congestive heart failure, I hope that he will read the studies in gerbils, mice, rats, dogs, monkeys, horses and oh yes humans that prove failure of short-course antibiotic therapy and persistent infection in chronic Lyme disease. And after that, like so many patients who are neglected by the tainted IDSA guidelines, when he seeks out those “wacko cranks” who treat patients with his illness, I hope that those caring physicians do not kick him out the door the way he deserves, but show him some charity. He certainly won’t get any from IDSA.

    And congratulations Connecticut, your Attorney General is a true hero and a star!

  23. #23 PalMD
    May 24, 2008

    Hmm. So I’m the one encouraging compassionate care based on the best available evidence, and those who want to recommend otherwise wish me to share in their unfortunate suffering. Interesting.

  24. #24 David Thomas
    May 24, 2008

    You are the one encouraging patient neglect based on the biased “best evidence” in the tainted IDSA guidelines, and we are wishing that if you do end up like chronic Lyme patients, you will not have to suffer the same miserable “compassionate care” that they do because of the tainted IDSA guidelines.

    It’s not interesting at all. Your point of view is uninformed and void of compassion.

  25. #25 Nick Sullivan
    May 24, 2008

    Lawl… All evidence is “biased”, biased as the means used to generate scientific/medical evidence are biased towards examining phenomena that exist. As PalMD’s noted there is null evidence form the standard tests for the presence of Lyme Disease causing bacteria in those suffering from Lyme Disease.

    Logic and experience dictate that as this is the case, using antibiotics on suffers will only have a placebo effect, and not solve the actually problem.

    So it’s pretty much irrational to say the IDSA’s guidelines are “tainted”, as it is also to say that Chronic “Lyme” Disease suffers should be treated with antibiotics…

  26. #26 David Thomas
    May 24, 2008

    To Nick Sullivan: “Standard” (ie patented commercial) tests for Lyme disease have a sensitivity of 40-56%. That means they miss about half the patients with the disease. When you go for your AIDS test, if the doctor tells you there’s a 50% chance you could still have AIDS with a negative test, would you be happy? Fortunately, AIDS testing has a 99.5% sensitivity. In contrast, the insensitive patented commercial Lyme tests will stay that way because they generate income for the biased authors of the tainted IDSA guidelines.

    “Logic and experience” translates into biased opinion. In the 18th century, “logic and experience” translated into bloodletting to cure disease, and doctors often killed people. This is what the tainted IDSA Lyme guidelines are based on. Maybe in your IDSA-dominated world everyone is biased, but it should not be that way. Which is exactly what the Connecticut AG is saying.

  27. #27 Phyllis Mervine
    May 24, 2008

    PalMD, Most people will agree that �so-called chronic Lyme disease, with no evidence of actual infection, does not respond to antibiotics� is probably not worth treating long-term with antibiotics. In fact, very few patients (or their doctors, even the ones you childishly label �wacko cranks�) will choose endless courses of antibiotics with accompanying adverse side-effects if they have no evidence that the treatment is helping.

    If quality of life is very poor, however, the patient may be willing to accept higher treatment discomfort and risk, even when the returns are minimal. This also is reasonable and should be the patient�s right. After all, we let people with cancer have chemotherapy and radiation, hardly benign treatments.

    But you are setting up a ridiculous straw man to knock down. Many people with �chronic Lyme disease� DO have objective evidence of infection and DO respond to long-term antibiotics. Our members do and patients enrolled in several double-blind, peer-reviewed studies also do. Are you saying we should also refuse to treat these people? Because that is what the IDSA guidelines say.

    Are you actually interested in the evidence, or only in evidence that supports what you already believe?

    Phyllis Mervine
    California Lyme Disease Association
    http://www.lymedisease.org

    For Your Information

    Page 11, ILADS Guidelines, http://www.ilads.org

    44. Table 1. Comparison of key IDSA and ILADS
    guidelines.
    CCondition IDSA
    Lyme arthritis B – II
    Encephalopathy A – II
    Retreatment None
    Prolonged antibiotics None
    Benzathine penicillin D – III
    Intra-articular steroid B – III
    Arthroscopic Synovectomy B – II
    Coinfection B – III
    Seronegative Lyme disease None
    Combination treatment None
    Empiric treatment None

    Condition ILADS
    Lyme arthritis A – II
    Encephalopathy A – II
    Retreatment A – II
    Prolonged antibiotics A – II
    Benzathine penicillin B – III
    Intra-articular steroid D – III
    Arthroscopic Synovectomy D – II
    Coinfection B – III
    Seronegative Lyme disease A – III
    Combination treatment B – III
    Empiric treatment B – III

    45. Criteria for evidence-based guidelines
    The ILADS recommendations are based on two criteria [10]:
    � The strength of the evidence (denoted by categories A�E)
    � The quality of the data (denoted by Roman numerals I�III)
    Recommendations rated �A� are considered good evidence to
    support the recommendation. Those rated �B� have moderate
    evidence to support the recommendation. Those rated �C� are
    considered optional. Measures designated �D� generally should
    not be offered; those designated �E� are contraindicated.
    A rating of I indicates that at least one randomized controlled
    trial supports the recommendation; II, evidence from at least
    one well-designed clinical trial without randomization supports
    the recommendation; and III, �expert opinion�.

  28. #28 PalMD
    May 24, 2008

    I believe you are confounding “late Lyme” and “chronic Lyme”. Many patients have objective evidence of active infection and have the late manifestations such as neurologic or cardiac involvement. This responds to antibiotics.

    Those who have no evidence of current infection, or who have “evidence” from sketchy labs, and a host of symptoms, do not respond to antibiotics, and they should not be used in these cases.

    The reference to the NEJM article above is a good starting point for those who are interested in the evidence.

    Especially troubling is “sero-negative Lyme disease”, that is, people who are told they have lyme, but have no evidence of the infection in their body.

  29. #29 Phyllis Mervine
    May 24, 2008

    How about answering my question above before going off in another direction?

    Many people with chronic Lyme disease (or LATE Lyme disease if you prefer) DO have objective evidence of infection and DO respond to long-term antibiotics. Do you agree with IDSA guidelines that we should limit their treatment to 2-4 weeks max if they relapse soon after treatment is stopped?

    This is a trick question to show if you are a humanitarian or not.

    Phyllis Mervine
    CALDA
    http://www.lymedisease.org

  30. #30 PalMD
    May 24, 2008

    A humanitarian doesn’t treat people based on guesswork, but on evidence. The evidence supporting the IDSA guidelines is excellent. None of the commenters has given any actual evidence to contradict these guidelines. If the preponderance of evidence eventually causes the guidelines to change, so be it, but at this point all you’ve given is individual anecdotes and a few cherry-picked references. That’s neither science nor compassion.

  31. #31 David Thomas
    May 24, 2008

    To PalMD: Since you won’t be convinced by evidence from the peer-reviewed medical literature in animals and humans, let me suggest an experiment: You should inject yourself with Borrelia burgdorferi, the agent of Lyme disease, wait several weeks, and then take 2-4 weeks of antibiotics. Unfortunately if you end up like most chronic Lyme patients with multiple disabling symptoms, a negative commercial Lyme test and denial of further antibiotic treatment because of the tainted IDSA guidelines, it would only be anecdotal evidence. But hey, nothing else seems to convince you.

    This experiment was suggested to Peter Duesberg when he claimed that HIV was not the cause of AIDS. Needless to say, we are still waiting for him to try it.

  32. #32 Phyllis Mervine
    May 24, 2008

    Your statements suggest that you have great respect for expert opinion, but beware! IDSA makes several broad claims that are not supported by science.

    1. The tests work well to diagnose Lyme disease in most patients.

    These tests actually dont work well to diagnose Lyme disease in most patients. In fact they are barely better than a coin toss, detecting only 44% of patients tested. This is significant, because a CALDA survey found that 73% of respondents were denied a diagnosis for Lyme at least once due to a negative ELISA by CDC criteria. Of these, 31% were denied access to a Western blot by their physicians due to a negative ELISA. This resulted in a delay in diagnosis of one year or more for 49% of responding patients. The average period of delay in diagnosis was almost 4 years.

    2. A minority of patients continue to suffer problems

    In actuality, numerous peer-reviewed, published studies state that 26% to more than 50% continue to suffer problems. Chronic Lyme can be as disabling as congestive heart failure.

    3. The spirochete bacteria can no longer be found despite rigorous testing

    Numerous studies have demonstrated persistent bacteria post-treatment, even after aggressive treatment, in heart, skin, eye, cerebrospinal fluid, ligaments, spleen, synovium, collagen, blood, urine. In early March, the American Society of Microbiology published research that proved that one month of treatment with the IV drug ceftriaxone did not kill all the Lyme spirochetes in infected mice. This is the most recent research to prove persistence of infection. A few weeks later, IDSA President Donald Poretz sent a letter to members of Congress, saying, “[T]here are no convincing published scientific data that support the existence of chronic Lyme disease.”

    4. For patients with persisting symptoms after initial treatment for Lyme disease, long-term antibiotics were no better than placebo and post-treatment Lyme disease doesnt respond to antibiotics.

    Peer-reviewed, published studies, including those funded by NIH, show that patients improve with treatment.

    CALDAs position is that there is considerable uncertainty regarding the diagnosis and treatment of Lyme disease. No single diagnostic and treatment program for Lyme disease is universally successful or accepted. Each of the two schools of thought is described in peer-reviewed, evidence-based treatment guidelines. Until we know more, patients must weigh the risks and benefits of treatment in consultation with their doctor and make an informed decision based on their own personal values.
    A separate issue is whether you as a doctor are satisfied with practicing cookbook medicine that allows no clinical discretion. This is what the IDSA guidelines attempt to do. They spell out every detail, call the guidelines voluntary, and then rely on state medical boards and insurance company reviewers to enforce them. This makes some doctors very uncomfortable.

    Medicine is learned by the bedside and not in the classroom. Let not your conceptions of disease come from words heard in the lecture room or read from the book. See, and then reason and compare and control. But see first. (William Osler) Here we are: look, listen, and learn like the good doctors of ILADS (www.ilads.org).

    Max Planck, who won the Nobel Prize in 1918 for quantum theory, said: “Important scientific innovation rarely makes its way by gradually winning over and converting its opponents. What does happen is that its opponents gradually die out and that the growing generation is familiar with the idea from the beginning.”

    Judging from your responses, it looks like we have another 20-30 years to wait, but we are not going to wait in silence.

    Now, I wish you a pleasant holiday and if you or your precious children happen to get a tick bite on your Memorial Day outing, which I hope you do not, please contact the online information and support group in your midwestern state by going to http://health.groups.yahoo.com/group/STATENAMElyme
    and the kind volunteers there will endeavor to help you.

    Phyllis Mervine
    CALDA
    http://www.lymedisease.org

  33. #33 Due_Diligence
    May 24, 2008

    For the IDSA Lyme guidelines authors, most of whom are academic researchers, profits are in running clinical vaccine trials and their own commercial interests in tick-borne disease testing; there is no money in the cure — off-patent antibiotics.

    If you read the Attorney General findings on the IDSA investigation, you will find that:

    **The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;

    **Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;

    **The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSAs oversight committee;

    **The IDSAs 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the groups position on chronic Lyme disease to achieve consensus;

    **The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;

    **The IDSA portrayed another medical associations Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.

    For well-researched details of the shameful history of Lyme disease, read the new book “Cure Unknown: The Making of the Lyme Epidemic” by Pamela Weintraub, available on Amazon, or go see the investigative documentary that will be playing in Silver Spring, Maryland from June 17-23, called “Under Our Skin: An infectious film about microbes, money, and medicine.”

    I suspect that PalMD will feel compelled to delete his previous entries after he actually does his homework.

  34. #34 Sharon H., MLIS
    May 24, 2008

    First off, PalMD, I do not wish you ill, and with due respect to David Thomas’ frustration, I do not subscribe to his view.

    Second, as I said, the problem in this discussion is one of definition. IDSA wants to re-define chronic Lyme as seronegative, non-specific, mild, and having only subjective symptoms. I have heard directly from 2 leaders in the International Lyme and Associated Diseases Society (ILADS) would not diagnose Lyme disease under those criteria, either. When they (and most experts, see my prior post) are talking about chronic Lyme, they mean persistent signs and symptom clusters, NOT vague, which are often debilitating, and which sometimes can be confirmed by PCR, culture, or serology.

    Let me take you into a document that stops just short of slander.

    http://content.nejm.org/cgi/content/full/357/14/1422 — note that every IDSA guidelines author save 2 is included in this paper, either as a first author or as part of the “ad hoc International Lyme Disease Group.”

    Quoting the paper [my comments in brackets]:

    “The word ‘chronic’ has been applied to Lyme disease in a wide variety of contexts and is sometimes used interchangeably with the preferred term ‘late Lyme disease.'”

    [Yes, that’s how the ILADS doctors would define it, as would the NIH and the American College of Physicians, see my previous post for links. Further, the IDSA authors have referred to chronic Lyme in this manner in other writings. For example, Dattwyler described chronic Lyme as a “deleterious effect” of untreated Lyme in 2007, if you’ll pardon the long link
    http://patft.uspto.gov/netacgi/nph-Parser?Sect1=PTO2&Sect2=HITOFF&p=1&u=%2Fnetahtml%2FPTO%2Fsearch-bool.html&r=1&f=G&l=50&co1=AND&d=PTXT&s1=dattwyler.INNM.&OS=IN/dattwyler&RS=IN/dattwyler ]

    “The focus of this review, however, is not the objective manifestations of late Lyme disease but rather the imprecisely defined condition referred to as ‘chronic Lyme disease.'”

    [Hmm, they just said that many people equate chronic and late-stage, but now they say that’s not how THEY define it.]

    “This term is used by a small number of practitioners (often self-designated as ‘Lyme-literate physicians’) to describe patients whom they believe have persistent B. burgdorferi infection, a condition they suggest requires long-term antibiotic treatment and may even be incurable.”

    [The term “Lyme-literate physician” was coined by patients, not physicians, as shorthand to refer to healthcare professionals who recognized various manifestations of Lyme and treated with long-term antibiotics if necessary. Some belong to the ILADS, some not. ILADS has a membership of a few hundred. Many more doctors than that will prescribe for longer than 2 months if it is indicated. And as I said, these doctors are not treating vague symptoms, but debilitating late-stage disease.]

    It is dishonest to re-define chronic Lyme as a non-disease and then accuse hundreds of doctors of treating a non-disease, when those doctors defined chronic Lyme as a debilitating symptom cluster. We are not confusing “chronic” and “late stage,” we are EQUATING them, just as others have done for the last 10 years and longer.

    I would be happy to provide more documentation about the existence of persistent Lyme, if you are interested.

    Regards,
    Sharon H., MLIS

  35. #35 Lee
    May 24, 2008

    Since even before the 1994 Dearborn Convention when diagnostic (indirect tests based on one’s immune response) guidelines were first being chosen for Lyme disease there has been controversy. Controversy amongst the very physicians and researchers who were there that day when some attendees walked out rather than put there names to what was obviously preordained. Not much has changed since then. We still have neither a definitive nor a direct test to measure for the absence or presence of infection. We still have a rather small group of self citing academics, many of whom have financial conflicts of interest with this complex disease, who set the standards of care. This would be fine IF the pathophysiology of Lyme disease were understood, but it isn’t. This would be fine if we had definitive tests for Lyme disease, but we do not. This would be fine if the microbiology of the bacteria was clear cut, but it isnt.

    Borrelia burgdorferi remains an exciting mystery with its ability to assume various forms in various conditions and with an almost infinite ability to change outer surface proteins.

    And when I see studies like the one done recently at UC Davis with Stephen Barthold wherein “cured” mice were able to re-infect “clean” ticks… I realize that for any one or any group to speak in a definitive manner about this disease is …unadulterated balderdashnot to mention unscientific. When one does not have accurate or definitive tests one does not have the evidence needed to formulate restrictive guidelines, no matter how many studies are based on these tests; no matter if you had a mountain of “evidence” derived from inadequate tests. (and we don’t) To claim that this is “evidence” is simply dishonest.

    It can be frightening for physicians to face a disease without definitive objective standards….but just proclaiming a standard does not make it so.

    Lee Lull

  36. #36 Theresa
    May 24, 2008

    A few comments to make:

    * Doesn’t it strike anyone as crazily illogical, this assertion by the IDSA folks that symptoms past the magical 3 week mark are not related to active infection?? Has someone found a way to communicate with the bacteria to inform them to pack up shop, stop their parasitic natures, and leave the premises? Has someone established a bacterial United Nations with the power to negotiate a cease fire at the 21 day mark, and send the “bad guys” packing?

    * The IDSA folks tout a very small handful of double blind study results to “prove” that longer term antibiotics are unnecessary. Why haven’t they addressed the fully logical conclusion that the 30-90 day trials failed because they were NOT LONG ENOUGH, or did not have the right antibiotics in combos that might lead to more treatment success? This conclusion is as equally plausible as theirs.

    * The IDSA folks do not ever address the compounding factor of the coinfections that can also be transferred from a tick infected with Borrelia. The University of New Haven published a study within the last 2 years which revealed that infected ticks on average pass along 5 different bacterial and some viral infectious agents. Isn’t it obvious why the symptoms caused by Borrelia and coinfections treated with ONE antibiotic may not lead to the eradication of infection?

    * Not even Syphilis, a spirochetal cousin of Borrelia has been put thru the ringer of extensive double blind studies (and poorly designed ones at that) to determine treatment recommendations. Back then, and even now, the MD’s who treat it used the self report of those infected, along with observable symptoms to decide when and how long to treat. Treatment was left as an open ended clinical decision. In short, treat until defeat.

    * The IDSA paints the picture of the disease and its treatment as easy to diagnose, and easy to treat, when nothing could be further from the truth. Those in the trenches of treating the very sick, know that we are at times, looking at a monster of an infection, with a tiny drop of research behind it as compared to AIDS.

    Imagine! These doctors have the AUDACITY to maintain an open mind, the audacity to use their minds to challenge the IDSA when what they are seeing in their patients is a different story. They look at all the research available from all over the globe, and use their best and kindest treatment skills to listen and trust the reports of symptoms by the patient and their families.

    They also have the clinical wherewithall to rule out every possible cause of the symptoms before coming to the conclusion that the patient has a Borrelia infection.

    It took my family practice physician almost 9 months to come to her diagnosis, after testing for every possible disease. During this time, my symptoms grew worse, and within 2 weeks on oral Ceftin once the diagnosis was made, I began to feel miraculously improved.

    If a Lyme patient has the cessation of her Lyme disease symptoms while on an oral antibiotic, and has her symtoms brutally return after the cessation of the antibiotic treatment: SHOULD THIS PATIENT NOT HAVE THE RIGHT TO MAKE AN INFORMED DECISION ON WHETHER OR NOT TO CONTINUE ON THE ONLY TREATMENT THAT ALLOWS HER TO WORK AGAIN, TO ENGAGE WITH HER FAMILY AND FRIENDS, TO ACTUALLY ENJOY HER LIFE??IT IS THE PATIENTS RIGHT TO CONTINUE ON THAT TREATMENT, PURE AND SIMPLE. Why this point gets lost in the debate, I have no damn idea.

    *In the field of oncology, as every well-educated physician knows, docs are free, and without harassment, allowed to use their judgement on whether to continue patients on chemo or new drugs when it may prolong life, or increase their quality of life – EVEN WHEN it may not lead to a cure for that patient. Why is this not questioned so vehemently by the medical establishment???

    Again, as a cancer patient has the right to make an informed decision to maintain on drugs that may or may not lead to a cure, so have those infected with a tenacious and complicated tick borne disease have the right to continue treatment on antibiotics. Aren’t antibiotics a little less toxic than chemo????

    “PalMD” Your child-like behavior on this blog is not even worth responding to. I chose to write what i have written as a way to engage in dignified discussion, and hopefully more readers of this blog will ask respectful questions, and engage in dignified discussion. Our hope in finding more effective treatments for this disease is in both “sides” having discussions like this one.

  37. #37 Sharon H., MLIS
    May 24, 2008

    I just noticed Phyllis’ most recent post. Since you have said that you wanted to see the evidence, I have looked up references for her assertions, if you would like to read them.

    1. “The tests work well to diagnose Lyme disease in most patients.”

    The tests do not work well — in this 2005 Johns Hopkins study they only got 25% posivity out of the acute cases, and only got to 43% by combining acute and convalescing serologies:
    http://jcm.asm.org/cgi/content/full/43/10/5080?view=long&pmid=16207966

    see also http://www.lymeinfo.net/medical/LDSeronegativity.pdf

    2. “A ‘minority’ of patients continue to suffer problems.”

    http://www.annals.org/cgi/content/full/121/8/560 — following up on a cohort after 10 years in 1994, the discoverer of Lyme disease said, “Our data show a higher prevalence of recurrent arthralgias, memory loss, and other neurologic symptoms in persons with a history of Lyme disease compared with persons of similar age and sex,” with at least 61% having at least one symptom (Table 3)

    see also http://www.lymeinfo.net/medical/LDPersist.pdf

    3. “The spirochete bacteria can no longer be found despite rigorous testing.”

    At UC-Davis, they treated mice for Lyme, then let uninfected ticks feed on them. When those ticks fed on previously uninfected mice, Lyme was found in the naive mice:
    http://aac.asm.org/cgi/content/abstract/AAC.01050-07v1
    http://www.news.ucdavis.edu/search/news_detail.lasso?id=8584 — discussion of the study

    4. “For patients with persisting symptoms after initial treatment for Lyme disease, long-term antibiotics were no better than placebo and post-treatment Lyme disease doesn�t respond to antibiotics.”

    http://www.ncbi.nlm.nih.gov/pubmed/12821734?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum — fatigue improved, 2003

    http://www.neurology.org/cgi/content/abstract/01.WNL.0000284604.61160.2dv1 — fatigue, pain, and physical function improved, cognition improved temporarily, 2007

  38. #38 PalMD
    May 24, 2008

    Alright, folks…
    So far, no one has approached this issue substantively. No one has presented evidence better than that of this countries best medical experts. All that has happened is b.s. “patient’s rights” statements, occasional cherry-picked bull, and tautological idiocy (“the tests aren’t good because I’m sick but my test is negative”).

    Don’t confuse denialism for debate.

  39. #39 David Thomas
    May 25, 2008

    I guess that this discussion is over. Lyme denialists cannot be reasonable. That’s how we got the tainted IDSA guidelines in the first place.

    To those who posted compelling references from the peer-reviewed medical literature and logical arguments about chronic Lyme disease, the CT AG will make sure that these arguments do not fall on deaf ears. The country is watching, and the days of ignorant comments like PalMDs are numbered.

  40. #40 PalMD
    May 25, 2008

    In case you missed it, the CT AG is out of the picture. he finally realized he was on a fool’s errand and came to an agreement with the IDSA and dropped all charges and investigations.

  41. #41 CTPatriot
    May 25, 2008

    Lipson: If there’s one thing I’ve learned from reading your responses on this topic, you are as much of a cultist as you accuse others of being. We have provided you with links to peer reviewed research and made very substantive arguments. The points we have raised, were you truly interested in writing about “denialism”, ought to have caused you to re-evaluate your rhetoric and to engage in a substantive discussion with us.

    You have, instead, chosen to dig in your heels, make no effort to review the information we provided or discuss it, and instead posted one brief moronic response after another. I had a doctor like you once. He’s the reason I became chronically ill. He was chronically arrogant and chronically convinced that he had all the answers.

    The CT AG’s settlement, by the way, was a severe smackdown of IDSA and their authors. Their guidelines now have to be reviewed by an independent panel which will not be composed of the usual suspects whose bias and conflicts of interest led to this mess. Lastly, now that you’ve admitted the exact point I made to you earlier, that the AG was very obviously NOT attempting to practice medicine without a license, but rather leaving that part up to the medical experts, perhaps you might want to change the title of this thread … because you now know it is a lie.

  42. #42 Stagyar zil Doggo
    May 25, 2008

    Following the links provided by PalMD, I have –
    From the AG’s website:

    At least 75 percent of panel members must vote to sustain each recommendation or it will be revised.

    From the IDSA site:

    Any proposed changes to the guidelines would require a supermajority vote of 75 percent of the panel.

    Hm, … anyone have access to the text of the consent agreement that they signed?

    On other points too, there is discord between the two webpages. The AG alleges conflict of Interest, which the IDSA ‘strongly disagrees’ with. The AG says that IDSA kicked out a dissenting panel member in 2000, while IDSA insists that s/he “voluntarily stopped participating”. IDSA insists that its guidelines are voluntary and that they “do they have the ability to dictate to insurance companies how to reimburse for services”. The AG gives a list of Insurance companies who “have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment”. The AG stresses that the new panel which will be tasked with re-assessing said guidelines may not contain anyone who served on the 2006 panel. IDSA is silent on this issue (at least on the linked page).

    So, I’m not sure that all the action on this issue is over. It may spark up again depending on whether the ‘dissenters’ manage to get someone into the new panel, or make an impact in live (through Internet) presentation to the panel.

  43. #43 Sharon H.
    May 25, 2008

    Thank you, Stagmar, I hadn’t seen that detail.

    The text of the actual legal agreement is at
    http://www.ct.gov/ag/lib/ag/health/idsaagreement.pdf

    In part 4c. of the action plan, it reads, “Panel determinations/recommendations shall require a supermajority vote of 75% or more of the total voting members.” In other words, whether they vote to keep the guidelines OR vote to change sections OR vote for a complete rewrite (part 5), it will take a supermajority vote. So both sides are right, in part.

    And I agree with you, the debate is far from over.

    SLC, you asked, “What is the conflict of interest?” Your question only addresses part of the attorney general’s findings. His findings were:

    — The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;

    — Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;

    — The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee;

    — The IDSA’s 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group’s position on chronic Lyme disease to achieve “consensus”;

    — The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;

    — The IDSA portrayed another medical association’s Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.

    As far as conflicts of interest, the AG found,

    “The IDSA’s 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests — in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies — to exclude divergent medical evidence and opinion.”

    It was never just about conflicts of interest with antibiotic manufacturers, and the IDSA panelists would have you believe. You can read about that and more at
    http://www.ct.gov/ag/cwp/view.asp?Q=414284&A=2795

    PalMD, you said:

    “So far, no one has approached this issue substantively. No one has presented evidence better than that of this countries [sic] best medical experts. All that has happened is b.s. “patient’s rights” statements, occasional cherry-picked bull, and tautological idiocy (“the tests aren’t good because I’m sick but my test is negative”).”

    If you would like two more documents with dozens of citations that present evidence refuting the IDSA guidelines, I would suggest ILADS own treatment guidelines:

    http://www.ilads.org/files/ILADS_Guidelines.pdf

    and a Powerpoint collection of citations, often by the IDSA authors themselves, supporting persistent Lyme and seronegative Lyme:

    http://www.ilads.org/Presentation_ChronicLyme.html

    I think I provided quotes to back up what I said, provided links so that you could read the quotes in context, and often provided additional links to prove that I wasn’t just cherry-picking. I never made a reference to patient’s rights, nor said “I’m sick but my test is negative,” because that is an untrue statement in regards to me.

    I have provided room for discussion. You have come up with terms such as handful of wacko cranks, sketchy labs, b.s., bull, and idiocy.

    And this website is about…?

    Regards,
    Sharon

  44. #44 daedalus2u
    May 25, 2008

    With all this talk of conflict of interest, has the Atorney General disclosed his potential conflicts of interest? In CT, the Atorney General is elected. That means campaigns which requires campaign donations which requires campaign donors.

    Has the Atorney General disclosed who donated to his campaigns and who worked on them and what their conflicts of interest are?

  45. #45 PalMD
    May 25, 2008

    I’ve read the ILADS doc. It’s rather disturbing in it’s absence of scientific reasoning in favor of supporting pre-formed conclusions:

    7. Highlights of guidelines
    Since there is currently no definitive test for Lyme disease,
    laboratory results should not be used to exclude an individual
    from treatment
    Lyme disease is a clinical diagnosis and tests should be used to
    support rather than supersede the physicians judgment
    The early use of antibiotics can prevent persistent, recurrent
    and refractory Lyme disease
    The duration of therapy should be guided by clinical
    response, rather than by an arbitrary (i.e., 30 day) treatment
    course
    The practice of stopping antibiotics to allow for delayed
    recovery is not recommended for persistent Lyme disease. In
    these cases, it is reasonable to continue treatment for
    several months after clinical and laboratory abnormalities
    have begun to resolve and symptoms have disappeared

    The data do not support these statements. The statement basically lists a large set of common, non-specific symptoms, and says, even if the (readily available) laboratory tests don’t support a history of Lyme infection, these patients should be treated with antibiotics until such a time as this diverse list of symptoms improve.

    The real medical literature is replete with actual trials that have failed to support any of these assertions.

  46. #46 M
    May 25, 2008

    Dear PalMD, you wrote, ” The evidence supporting the IDSA guidelines is excellent. None of the commenters has given any actual evidence to contradict these guidelines.” I appreciate your conclusion, as it is the one I once made after 20+ doctors told me that I did have “something”, but it wasn’t lyme (apparently repeatedly positive blood work wasn’t enough). – But, these wise men suggested, maybe I had Chronic Fatigue Syndrome and depression and heart arrhythmia and a rash that was caused by a bite from another bug and tremors of my jaw and arms which were caused by a strange virus “going around” and leg pain was because I wasn’t wearing comfortable enough shoes and bells palsy which happened because I was “sleeping in a weird position” and light sensitivity which indicated that I needed better sunglasses.
    Thank God those guidelines for diagnosis were followed by my doctors- What a travesty it would have been for them to do ANY of their own decision making and/or research into how a very healthy young student could go from healthy to entirely disabled in about 2 weeks time. No. It was probably more scientific just to tell her why she has each individual problem give her a handicapped sticker, and kick her out the door.
    Get with it!!!! This is not about sound research. It is about money and academic bullying.
    The IDSA’s evidence was written by the all-knowing Klempner…who then suddenly got a $1.6 billion govt. funded Level 4 biowarefare lab built in the middle of Boston for him to further his awesome research.
    I believe that the ILADS group would very much love the chance to prove their ILADS guidelines are more appropriate, but who will fund this research? The government? hmmm… Apparently not. Rep. Frank Pallone is stopping the bill, HR 741, sponsored by Rep. Chris Smith,from getting a HEARING -that’s it! This bill would authorize a $100 million, five-year plan to expand Lyme disease research and education.

    Obviously the government has better places to spend their money (think $1.6 billion biowarfare lab in downtown Boston). I mean why would you allocate any $$ to help educate the public on how to avoid getting this horrible disease? Clearly the govt. believes further lyme research (“further” being further than their 2 ancient and flawed studies) to be a waste of money.
    Obviously we know everything about lyme and there is nothing more to learn..

    So why are we all still so sick?

  47. #47 PalMD
    May 25, 2008

    Hmmm…there’s actually lots of ongoing work on Lyme disease, as there should be.

    Also, in endemic areas, people are pretty knowledgeable, thanks to public education. Most folks i know in, say, suburban new england and long island know how to avoid tic bites, and what to look for re signs and symptoms of lyme disease. Also, most physicians in these areas are pretty aware of the same info, and treat the disease quite frequently. Even I, in an area where it is quite rare, have treated a few cases.

  48. #48 CanadianChick
    May 25, 2008

    hmmm…reading the comments, I don’t think it’s PalMD who is behaving childishly…

    or unscientifically…

  49. #49 T. L. Kittle
    May 25, 2008

    Since *when* is it okay for ANYONE to INTERFERE WITH PHYSICIAN/PATIENT RELATIONSHIP??

    Guess what guys–we don’t know all the answers, and “science” should always be held up for what it is–not having definitive answers.

    They through around “the science” for Lyme disease without pointing out the science itself is faulty–by their own admission in the NEJM article (in regards to their references to false positive test results).

    Obviously, medicine needs to be practiced CLINICIALLY. We should use “science” as a guiding tool, but the final decision should be between

    the PATIENT AND THE PHYSICIAN–with the PATIENT having final word.

  50. #50 T. L. Kittle
    May 25, 2008

    “Connecticut Attorney General practicing medicine without a license”

    I’d be very careful about slander–this is obviously *not* what the Attorney General is trying to do–

    The last I checked, he hasn’t seen a single patient in his office…ever.

  51. #51 Muse142
    May 25, 2008

    PalMD, I just wanted to let you know that not everyone who reads your blog is a credulous troll.

    Keep on rockin in the free world.

  52. #52 Sharon H.
    May 25, 2008

    PalMD, you quoted the “highlights” section of the ILADS guidelines, which are discussed in more detail (with citations) in the following sections. Those are guidelines — by definition, they are about conclusions and recommendations, not investigations. The data do support their statements.

    I agree with you, the symptoms list is too short and non-specific. Having attended conferences where Lyme docs presented more recent findings, I would expect this section to be much more specific in future editions.

    And yes, there has been a lot of ongoing work on Lyme disease. We are a long way from understanding tick-borne infections. Five years from now, I suppose there will be new treatment protocols based on the evidence that is currently unfolding.

  53. #53 LanceR
    May 25, 2008

    Holy cow, did THIS bring the nuts out of the woodwork!

    Reading for comprehension… yer ALL doin’ it wrong!

  54. #54 PalMD
    May 25, 2008

    I never said the symptom list was “too short”…it’s actually way too long to be of any use.

    Perhaps some day we will understand chronic, non-specific disabling malaise better, but currently we don’t know much. To mislabel and mistreat it does no one any good.

    Wait, strike that. It actually does. So many people become ignored and marginalized when medical science cannot seem to figure out what ails them. We do have some non-specific ways of helping folks like this, but we still have a long way to go in sorting out what individual patients are suffering from.

  55. #55 PalMD
    May 26, 2008

    “Connecticut Attorney General practicing medicine without a license”

    I’d be very careful about slander–this is obviously *not* what the Attorney General is trying to do–

    The last I checked, he hasn’t seen a single patient in his office…ever.

    ZOMG! What a freak! It’s called a headline on a blog. It’s rhetoric. It’s nothing like slander (or, more proberly, libel).

    Friggin’ idiot.

  56. #56 Anonymous
    May 27, 2008

    These groups are not fringe. The guidelines that stop treatment of lyme disease past two weeks are looked at as the golden standard. A standard that insurance companies are using to deny treatment to thousands and thousands of American citizens who are extremely ill with the fastest growing infectious disease in the world. That’s not fringe. That’s horrible injustice.

  57. #57 Theresa
    May 28, 2008

    “It’s rhetoric. It’s nothing like slander (or, more proberly,[sic] libel). ”

    I see two more headlines here:

    LIPSON PRACTICING LAW WITHOUT A LICENSE?

    LIPSON PRACTICING BEING A TEENAGER WITHOUT THE ACNE?

    ROTFL OMG LOL GAFDD

  58. #58 Alex E. McKinnon
    February 10, 2009

    Dear Scienceblogs.com
    This is to the egg head who is knocking the Conneticut Attorney Generals office for helping WE THE PEOPLE.
    What I just read Connecticut AG practicing without a license. by PalMD.
    You sir have not experienced having Chronic Lyme Disease nor have anyone (wife, child or realative who is suffering from this.
    WHEN A COMPANY FOR PROFIT ORGANIZATION SUCH AS IDSA WHO IS FUNDED BIG TIME BY THE INSURANCE INDUSTRY AND OTHERS AND ON THE PAYROLL OF THESE INDUSTRIES IS PATHETIC.
    You from your name must be an MD.
    SAD TO SEE YOUR TREATING WE THE PEOPLE!
    The AG would not have done this without a reason nor would they have WON and proved that the IDSA is WRONG.
    My wife is suffering from Chronic Lyme.
    Was diagnosed with MS, Loopis and many other diseases (BY THE WAY CLINICAL PERSONAL DIAGNOSIS’S)
    You sir if you are an MD are an IN THE BOX DOCTOR WITH BLINDERS ON AND HAVE LOST WHAT BEING A DOCTOR IS ALL ABOUT.
    I am sharing with you this.
    LOOK UP THIS NAME DR. BARRY MARSHALL MD.
    The aussie doctor who does not accept the word no.
    Dr Marshal is an gastronologist.
    Have you heard of H PILORI BACTERIA? palMD?
    Have you ever heard of the NOBEL PRIZE FOR MEDICINE.
    I STRONGLY SUGGEST THAT YOU READ AND DO YOUR HOMEWORK ON DR MARSHALL FROM AUSTRAILIA BEFORE YOU SPOUT OFF any more about a DISEASE YOU HAVE NO IDEA ABOUT!
    Dr Marshall found the cure for the common bleeding ulcer in the 80’s was laughed at by the AMA and other in the MEDICAL INDUSTRY.
    DO YOU HOME WORK PALMD REALLY BEFORE YOU FILL PEOPLES MINDS WITH ANY MORE OF YOUR IGNORANT WRTINGS.
    Sincerely, Alex E. McKinnon
    ps AND THIS LETTER IS TO ALL YOU INTHEBOX MD’S WHO SEE NO FURTHER THEN YOUR NOSES.

  59. #59 Anonymous
    March 16, 2009

    CAPS LOCK doesn’t make your argument better

  60. #60 LanceR, JSG
    March 16, 2009

    Wow. I nominate Alex for a *headdesk* with double *facepalm* cluster. That is some weapons-grade crazy right there.

  61. #61 NJ
    March 16, 2009

    Now all we need to do is mention a vaccine for ‘chronic Lyme disease’ so all the anti-vax nutcases can come out and play too…

  62. #62 Ennyl
    April 21, 2009

    Dear Blogger:
    The Attorney General has the right to protect the interests of the public when guidelines followed by insurance companies are set by doctors who do not follow ethical guidlines on their self-appointed panels and then cut the panel short as they didn’t need to bother really setting any standards that mattered to anyone but the insurance companies, the researches with patents on the biological organisms and the patent rights holders of vaccines.

    Read the verbatim transcripts from the court case.
    http://www.ct.gov/ag/lib/ag/health/idsaagreement.pdf

    Mr. Blumenthal is defending **the citizen’s rights** to an unbiased board not his right to practice medicine. I think if you Read the transcripts for God’s sake, you’ll see that it is a legal matter not medical practice issues! It’s all there as to what the BLANTANT conflicts of interest were and continue to be since the IDSA is so resistant to getting it, as you seem to be.

    For the record, the treatment of LYME has become a PUBLIC HEALTH matter due to swelling numbers of those now struck with LYME DISEASE. It is an epidemic.

    I am not sure when doctors and medically trained personnel started believing that they are above reproach by a defender of citizen’s rights such as an Attorney General, particularly when it is in a public health arena?

    It’s like saying stockbrokers don’t need Federal regulations or laws to guide their investment decisions as we are all grown ups playing on the same level playing field without needing to know what the experts are really doing. Just trust them.

    Get real, the public interest needs defending against the likes of professions such as yours particularly when you think you do not need a legal overseeing of anyone in your profession.

    By the way, whatever did happen to the Lyme Vaccine that was out a couple of years ago?

  63. #63 LanceR, JSG
    April 21, 2009

    Reread the agreement you link to, genius. The guidelines stand as written, the IDSA agrees to reevaluate them periodically (which is what would happen anyway) and the AG will go STFD and STFU. Which would also be good advice for you…

    You appear to be clueless about several things:
    A. how science works,
    B. how medical guidelines are set up,
    C. how the legal process works,
    D. reality in general.

    You can rant and rave about “conflicts of interest” and “patent holders” all you like, but the end result of the guidelines is that they recommended *AGAINST* expensive treatments. This paid off… how?

    Reading for comprehension. You really ought to try it sometime.

  64. #64 suddenlyForgetful
    May 23, 2009

    Dear Lance,

    You seem like an intelligent enough young man. Maybe youre not getting enough attention? LOL.

    Have you seen Under Our Skin yet?

    Are you a researcher or a debater? There are tests out there being developed — University of Louisville has one being patented — that will disprove or prove the existence of chronic Lyme. It will also tell if your cancer is in remission.

    Until you can disprove it, it’s real to those who have a rash and suddenly have symptoms.

    If it is somatization, I have to laugh. No one has cured that either.

    I don’t care if you have MD after your name. Not impressed. I would be impressed if you had a test or something or a treatment to cure folks who suffer.

    Get busy. We’re in the dark here. The dark ages of medicine.

  65. #65 krisv
    June 2, 2009

    This is what I think- I applaud the only man willing to stand up for the rest of us. I was once one of those finger pointing “boy, I’m glad he got what he deserved” in regards to doctors “over-treating” Lyme disease. For every one of you that needs the studies and the proof under your noses to believe. I hope you get late-stage Lyme disease like I have. It’s a rude awakening and has changed the way I think forever. I have only had just over one month worth of anti-biotics in pill form. I am noticing some small changes. I literally thought I would have to prepare for my funeral this summer. I wish everyone would just admit that nobody really knows what these bacteria bring. Science has not caught up and these bacteria are smarter than we are- that’s why they survive. So stop taking a “science-based” head trip and listen to what people like me are saying. I want the option to sign off on treatment that I know might have consequences because I choose to do so. I am just as smart as the rest of you and I’ve researched my options. I could still be in bed with my Fibromyalgia diagnosis or slowly dying from ALS like my boss. (I know he has Lyme.) So next time you make a judgment, think of me. I was judgmental once and then it caught up with me. I am positive about what the future holds but I wish people would pull their heads out of their arses before making the statements they do.

  66. #66 LanceR, JSG
    June 2, 2009

    Nothing in the IDSA guidelines prevents you from “the option to sign off on treatment that I know might have consequences because I choose to do so.” They are just guidelines. Conversely, there is nothing forcing your insurance provider to pay for treatments that are widely known to be useless and harmful, either.

    And do you really think anyone actually believes the whole “I used to be {insert group here}, but then I saw the light” shtick? It doesn’t even pass the smell test.

    You may want to lay off the veiled threats, BTW. It just makes you look childish.

  67. #67 minimalist
    June 2, 2009

    Don’t listen to that meanie LanceR, krisv! Before I make any future judgments, *I* will think of you!

    I will think of you and your anonymous, unverifiable anecdote on the interwebs.

    For about 0.0002 seconds.

    Before I go off to read the peer-reviewed scientific literature instead.

  68. #68 krisv
    June 2, 2009

    I see I’ve wasted my breath. I truly feel for you. Everything I wrote is truthful and I’m sorry it just agitates you. Have fun with yourselves and be judged by someone else that isn’t me. Feel free to delete both of my comments because your site was not worth my visit, nor my comments. I will now use my experience to make a difference unlike what you are doing. Lesson one, do not visit blogs where the people do not want to do the work of looking at both sides. Lesson learned.

  69. #69 LanceR, JSG
    June 3, 2009

    Gee, looking at both sides is hard. Especially when there’s nothing on one side!

    Another Reading For Comprehension Fail!

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