yet metronidazole is never prescribed for Lyme disease while the latter are.
Making a note of this; Lyme disease is common enough that this would be useful to remember. (Or, because I’m pretty sure I’ll forget the specifics, to remember that I can search my LW comment history for it.) Thanks!
It looks like different agents are more or less effective for different forms of the disease. This study didn’t look at Ceftriaxone as far as I can tell, which is what is usually used for later stage Lyme disease. Doxycycline is typically used for prevention, which makes sense because you’re probably less likely to have cysts forming immediately after infection. It doesn’t look like Metronidazole is as effective against non-cyst form Lyme disease.
Doxycycline treatment reduced spirochetes by ∼94%
Metronidazole treatment reduced spirochetes by ∼54%
and
Tinidazole treatment reduced round bodies by ∼94%
Metronidazole treatment reduced round bodies by ∼68%
Looks like Tinidazole might be even better than Metronidazole vs. cyst-form Lyme disease.
Lyme is a curious case, because most of the findings that researchers act unaware of are findings they are aware of but choose to ignore. There is a small group of doctors, most prominently Gary Wormser, who are determined to prove that chronic Lyme does not exist, despite a great deal of evidence to the contrary. To continue defending his position, Wormser has been reduced to claiming (6 years ago, in the IDSA recommendations, which govern most Lyme treatment in the US) that if you do a Western blot and an ELISA test, and either one of them comes back negative, that should override a positive result from PCR (which pretty much never gives false positives unless you really screwed up the primer design) or even visible detection of spirochetes via microscopy (on the grounds that Borrelia can’t be visibly distinguished from the microbes for leptospirosis or syphilis, even though all three have similar recommended treatments). Wormser and his gang dismiss all histological studies of the effects of antibiotics on Borrelia, every one of which has shown that antibiotics reduce the number of spirochetes, but don’t eradicate them. They claim that the dosage and pharmacodynamics were not compared correctly, and so their theories should be taken as stronger proof than experiments in animals. They also use the “no-man” principle above: One of their papers “proves” that patients don’t have Lyme by taking a group of patients, applying 5 different tests, and concluding that they don’t have Lyme if any one of the tests is negative, without any consideration of the false negative rates.
Changing the clinical guidelines to include additional antibiotics, on the grounds that they kill cysts, would mean admitting that some patients in the past might not have been cured of Lyme by antibiotic treatment without those additional drugs. That would invalidate many of the papers published on Lyme by the members of the committee that wrote the guidelines.
Lyme is, I think, the only disease in the world where patients routinely are diagnosed to have the disease by undisputed clinical evidence, get treatment, come back to their doctors and say “But I still have the symptoms!”, and are told that it’s all in their head because a paper proves that they’ve been cured. A key problem is that the accepted clinical tests are presence of the bulls-eye rash (which happens only on infection in most cases) and a positive blood serum assay (but the spirochetes live inside cells and may not trigger a blood immune response after dispersion). The only evidence most patients have that they’re still sick is that they still feel sick. Wormser et al. spend their time coming up with ways to discredit any clinical tests that have any chance of diagnosing late-stage Lyme.
Completely coincidentally, admitting that chronic Lyme exists, and, worse yet, coming up with an accepted way of diagnosing it, could instantly create a pool of hundreds of thousands of Americans covered by insurance policies that would then be obligated to pay indefinitely for treatment that costs up to $1000/month for oral amoxicillin, and perhaps $10,000/month for the more-effective intravenous drugs.
Wormser’s most recent paper argues that if a patient has a negative Lyme ELISA test on blood serum, then positive tests for Lyme based on immunological assays of synovial fluid, and also positive PCR tests, should be ignored, because all patients in a prior study of patients with Lyme who had positive blood serum tests had positive blood serum tests. Yes, you read that right.
If you’ll look at the history page of that Wikipedia page, you’ll see that I’ve tried twice to edit out the egregious bias and lies in that particular Wikipedia page. Look at the articles cited, and look at who was on the panels cited. Most of the papers and all of the panels concluding there is no chronic Lyme were by the same people, who have all co-authored papers with each other: Wormser, Halperin, Feder, and Shapiro. The “Major US medical authorities, including the Infectious Diseases Society of America, the American Academy of Neurology, and the National Institutes of Health,” are all the same people. The Connecticut Attorney General’s investigation concluded that the IDSA panel was formed with prejudice and that Wormser excluded doctors who did not agree with him. The AAN panel was largely the same people as the IDSA panel. The NIH merely cited the IDSA and AAN guidelines without conducting any independent study. Look at everything said on that page without any citation or support; most of those statements are false.
Look at the history page and see what I tried to change. The page originally had “chronic lyme disease” in quotes, implying that it did not exist. “Most medical authorities advise against long-term antibiotic treatment” has 3 citations, but all of them refer to statements by the same small group of doctors, who have consistently masqueraded as “most medical authorities” here and in journal articles. The following statements say that chronic Lyme does not exist, but again all the citations are to the writings of that same small group of doctors. The article dismissing the fact that animal studies always find antibiotics do not eliminate Borrelia was also written by those same doctors. Then the page says, “Major US medical authorities, including the Infectious Diseases Society of America, the American Academy of Neurology, and the National Institutes of Health, have stated there is no convincing evidence that Borrelia is involved in the various symptoms classed as chronic Lyme disease, and advise against long-term antibiotic treatment as ineffective and possibly harmful.” The four citations given again refer only to the writings of and panels led by that small group of doctors. The statement that “Prolonged antibiotic therapy presents significant risks and can have dangerous side effects” is not supported in the Lyme literature; the risks are associated with intravenous therapy, while most patients have oral medication, and the risks of taking the antibiotics are less than the risks of not taking them.
Then we come to the “Controversy and politics section”. It says,
The evidence-based perspective is exemplified by a 2007 review in The New England Journal of Medicine, which noted the diagnosis of chronic Lyme disease is used by a few physicians despite a lack of “reproducible or convincing scientific evidence”, leading the authors to describe this diagnosis as “the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections.”[221] Most medical authorities agree with this viewpoint: the IDSA, the American Academy of Neurology, the Centers for Disease Control and Prevention (CDC), and the NIH advise against long-term antibiotic treatment for chronic Lyme disease, given the lack of supporting evidence and the potential toxicities. [83][222][223]
AGAIN, all four citations are to the works of this small activist group of doctors (Wormser, Shapiro, Halperin, Johnson, and Feder). The other doctors who deny the existence of chronic Lyme are Steere and Auwaerter, but they don’t co-author with Wormser et al.
When I modified the page to add a statement pointing out that every one of those citations and all of the authorities cited to claim that there is no chronic Lyme disease trace back to these five doctors, my statement was twice redacted, on the grounds that I was violating Wikipedia policy by combining information from multiple sources in a way that is not present in any of the sources. That is, because no one of the papers says that all of the papers were written by the same people, I was not allowed to point out that all of the papers were written by the same people!
“A minority view holds that chronic Lyme disease is responsible for a range of unexplained symptoms, sometimes in people without any evidence of past infection.”—I doubt that this is a minority view among doctors familiar with Lyme. Citation needed.
“as to argue for insurance coverage of long-term antibiotic therapy, which most insurers deny, as it is at odds with the guidelines of major medical organizations”—no citation to indicate that most insurers deny long-term antibiotic therapy, and I don’t think this is true anymore. Blue Cross & Blue Shield allows it.
The section on the IDSA guidelines antitrust investigation is not false, but is remarkably pro-IDSA considering the findings of the investigation, which were that the panel was rigged and the science was bad.
“A 2004 study in The Pediatric Infectious Disease Journal stated 9 of 19 Internet websites surveyed contained what were described as major inaccuracies. Websites described as providing inaccurate information included several with the word “lyme” in their domain name (e.g. lymenet.org), as well as the website of the International Lyme And Associated Diseases Society”—citation is to an article by Feder.
“A 2008 article in The New England Journal of Medicine argued media coverage of chronic Lyme disease ignored scientific evidence in favor of anecdotes and testimonials”—citation to article by Feder & Johnson.
In conclusion, there are no citations in the entire Wikipedia article to claims that chronic Lyme does not exist, except to papers co-authored by or panels led by Wormser, Feder, Halperin, and Shapiro; and I was not allowed to point that out.
Excellent. Thanks. This will take me some time to look at in detail, but my initial impression from reading this is that you’ve got a decent set of examples here.
Being from the relevant geographic region, that sounds intuitively implausible. I know lots of people who had Lyme disease, and most of them had symptoms after treatment. I feel as skeptical as if you’d told me that influenza is a genetic disorder.
The claim isn’t though that there aren’t post-disease symptoms. The issues are a) whether they can last for years after (rather than months) and b) if they are caused by still living bacteria.
It seems as though the controversy is over what to call the syndrome, not whether it exists:
Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2-4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme disease Syndrome” (PTLDS).
Not really. PTLDS is over a much shorter time span than what is often being called chronic Lyme. The claims about chronic Lyme are generally for a disease lasting on the order of years.
There do seem to be cases of that. Recent Lyme-related news suggests that such cases may be caused by repeated infections. This would seem to contradict the “no antibiotics” advice—at least for these patients. These were patients with multiple rashes, though—chronic Lyme disease is supposed to be different from that.
That is another article by Wormser. He studied cases of people who had repeated EM (bullseye rashes). The methodology is actually clever, looking at the OpsC protein. But of course he knows this is going to be cited out of context to imply that people with chronic Lyme are really just being re-infected. As you noticed, the bullseye rash usually occurs immediately after infection. Most people with chronic Lyme don’t get repeated rashes, and this study is irrelevant to them.
Recent Lyme-related news suggests that such cases may be caused by repeated infections.
This makes sense — people who have gotten Lyme are not much more likely than others to move out of the Northeast U.S. or stay out of the woods, those being pretty much how to avoid exposure.
The article I cited suffers somewhat from sampling error though. You can’t really sample from those with migrating rashes—and then draw conclusions about the prevalence of repeat infections as an explanation for chronic cases.
Also, PTLDS is a way of saying that people have the same symptoms, but you shouldn’t give them antibiotics anymore, because they don’t have bacteria, they have an autoimmune disorder, or crystallized dead bacteria that irritate the tissues, or some other novel, theoretical disorder (which is in every case less likely than the simple alternative that they still have bacteria).
Given that each one of the 6 or so experiments I’ve read about performed in vitro or in vivo show that antibiotics rarely kill all the bacteria, I don’t understand why it’s so hard to believe that some bacteria survive antibiotic treatment.
Wormser’s most recent paper argues that if a patient has a negative Lyme ELISA test on blood serum, then positive tests for Lyme based on immunological assays of synovial fluid, and also positive PCR tests, should be ignored, because all patients in a prior study of patients with Lyme who had positive blood serum tests had positive blood serum tests.
Completely coincidentally, admitting that chronic Lyme exists, and, worse yet, coming up with an accepted way of diagnosing it, could instantly create a pool of hundreds of thousands of Americans covered by insurance policies that would then be obligated to pay indefinitely for treatment that costs up to $1000/month for oral amoxicillin, and perhaps $10,000/month for the more-effective intravenous drugs.
The conspiracy theory cuts both ways, though: a common conspiracy theory holds that massive numbers of people are being pumped full of painkillers and drugs that they don’t need by a multinational conspiracy between the drug companies and the FDA.
Even if believing one meant you had to believe the other, that would merely set the drug companies and insurance companies at odds. Which makes sense, given that one is trying to extract money from the other.
It’s conceivable that once there’s a group receiving expensive treatments, there’s a constituency to continue and expand those treatments, but there’s a constituency to not start spending more money on a merely potential constituency.
Making a note of this; Lyme disease is common enough that this would be useful to remember. (Or, because I’m pretty sure I’ll forget the specifics, to remember that I can search my LW comment history for it.) Thanks!
Here’s an interesting test of various antibiotics: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/
It looks like different agents are more or less effective for different forms of the disease. This study didn’t look at Ceftriaxone as far as I can tell, which is what is usually used for later stage Lyme disease. Doxycycline is typically used for prevention, which makes sense because you’re probably less likely to have cysts forming immediately after infection. It doesn’t look like Metronidazole is as effective against non-cyst form Lyme disease.
and
Looks like Tinidazole might be even better than Metronidazole vs. cyst-form Lyme disease.
Lyme is a curious case, because most of the findings that researchers act unaware of are findings they are aware of but choose to ignore. There is a small group of doctors, most prominently Gary Wormser, who are determined to prove that chronic Lyme does not exist, despite a great deal of evidence to the contrary. To continue defending his position, Wormser has been reduced to claiming (6 years ago, in the IDSA recommendations, which govern most Lyme treatment in the US) that if you do a Western blot and an ELISA test, and either one of them comes back negative, that should override a positive result from PCR (which pretty much never gives false positives unless you really screwed up the primer design) or even visible detection of spirochetes via microscopy (on the grounds that Borrelia can’t be visibly distinguished from the microbes for leptospirosis or syphilis, even though all three have similar recommended treatments). Wormser and his gang dismiss all histological studies of the effects of antibiotics on Borrelia, every one of which has shown that antibiotics reduce the number of spirochetes, but don’t eradicate them. They claim that the dosage and pharmacodynamics were not compared correctly, and so their theories should be taken as stronger proof than experiments in animals. They also use the “no-man” principle above: One of their papers “proves” that patients don’t have Lyme by taking a group of patients, applying 5 different tests, and concluding that they don’t have Lyme if any one of the tests is negative, without any consideration of the false negative rates.
Changing the clinical guidelines to include additional antibiotics, on the grounds that they kill cysts, would mean admitting that some patients in the past might not have been cured of Lyme by antibiotic treatment without those additional drugs. That would invalidate many of the papers published on Lyme by the members of the committee that wrote the guidelines.
Lyme is, I think, the only disease in the world where patients routinely are diagnosed to have the disease by undisputed clinical evidence, get treatment, come back to their doctors and say “But I still have the symptoms!”, and are told that it’s all in their head because a paper proves that they’ve been cured. A key problem is that the accepted clinical tests are presence of the bulls-eye rash (which happens only on infection in most cases) and a positive blood serum assay (but the spirochetes live inside cells and may not trigger a blood immune response after dispersion). The only evidence most patients have that they’re still sick is that they still feel sick. Wormser et al. spend their time coming up with ways to discredit any clinical tests that have any chance of diagnosing late-stage Lyme.
Completely coincidentally, admitting that chronic Lyme exists, and, worse yet, coming up with an accepted way of diagnosing it, could instantly create a pool of hundreds of thousands of Americans covered by insurance policies that would then be obligated to pay indefinitely for treatment that costs up to $1000/month for oral amoxicillin, and perhaps $10,000/month for the more-effective intravenous drugs.
Wormser’s most recent paper argues that if a patient has a negative Lyme ELISA test on blood serum, then positive tests for Lyme based on immunological assays of synovial fluid, and also positive PCR tests, should be ignored, because all patients in a prior study of patients with Lyme who had positive blood serum tests had positive blood serum tests. Yes, you read that right.
While the existence of chronic Lyme is controversial, the current consensus seems to be closer to it not existing than it existing.
If you’ll look at the history page of that Wikipedia page, you’ll see that I’ve tried twice to edit out the egregious bias and lies in that particular Wikipedia page. Look at the articles cited, and look at who was on the panels cited. Most of the papers and all of the panels concluding there is no chronic Lyme were by the same people, who have all co-authored papers with each other: Wormser, Halperin, Feder, and Shapiro. The “Major US medical authorities, including the Infectious Diseases Society of America, the American Academy of Neurology, and the National Institutes of Health,” are all the same people. The Connecticut Attorney General’s investigation concluded that the IDSA panel was formed with prejudice and that Wormser excluded doctors who did not agree with him. The AAN panel was largely the same people as the IDSA panel. The NIH merely cited the IDSA and AAN guidelines without conducting any independent study. Look at everything said on that page without any citation or support; most of those statements are false.
Can you point to specific statements that you think are false?
(Edit: Incidentally, I can give quite a few other sources which agree on which way the consensus leans other than Wikipedia.)
Look at the history page and see what I tried to change. The page originally had “chronic lyme disease” in quotes, implying that it did not exist. “Most medical authorities advise against long-term antibiotic treatment” has 3 citations, but all of them refer to statements by the same small group of doctors, who have consistently masqueraded as “most medical authorities” here and in journal articles. The following statements say that chronic Lyme does not exist, but again all the citations are to the writings of that same small group of doctors. The article dismissing the fact that animal studies always find antibiotics do not eliminate Borrelia was also written by those same doctors. Then the page says, “Major US medical authorities, including the Infectious Diseases Society of America, the American Academy of Neurology, and the National Institutes of Health, have stated there is no convincing evidence that Borrelia is involved in the various symptoms classed as chronic Lyme disease, and advise against long-term antibiotic treatment as ineffective and possibly harmful.” The four citations given again refer only to the writings of and panels led by that small group of doctors. The statement that “Prolonged antibiotic therapy presents significant risks and can have dangerous side effects” is not supported in the Lyme literature; the risks are associated with intravenous therapy, while most patients have oral medication, and the risks of taking the antibiotics are less than the risks of not taking them.
Then we come to the “Controversy and politics section”. It says,
When I modified the page to add a statement pointing out that every one of those citations and all of the authorities cited to claim that there is no chronic Lyme disease trace back to these five doctors, my statement was twice redacted, on the grounds that I was violating Wikipedia policy by combining information from multiple sources in a way that is not present in any of the sources. That is, because no one of the papers says that all of the papers were written by the same people, I was not allowed to point out that all of the papers were written by the same people!
“A minority view holds that chronic Lyme disease is responsible for a range of unexplained symptoms, sometimes in people without any evidence of past infection.”—I doubt that this is a minority view among doctors familiar with Lyme. Citation needed.
“as to argue for insurance coverage of long-term antibiotic therapy, which most insurers deny, as it is at odds with the guidelines of major medical organizations”—no citation to indicate that most insurers deny long-term antibiotic therapy, and I don’t think this is true anymore. Blue Cross & Blue Shield allows it.
The section on the IDSA guidelines antitrust investigation is not false, but is remarkably pro-IDSA considering the findings of the investigation, which were that the panel was rigged and the science was bad.
“A 2004 study in The Pediatric Infectious Disease Journal stated 9 of 19 Internet websites surveyed contained what were described as major inaccuracies. Websites described as providing inaccurate information included several with the word “lyme” in their domain name (e.g. lymenet.org), as well as the website of the International Lyme And Associated Diseases Society”—citation is to an article by Feder.
“A 2008 article in The New England Journal of Medicine argued media coverage of chronic Lyme disease ignored scientific evidence in favor of anecdotes and testimonials”—citation to article by Feder & Johnson.
In conclusion, there are no citations in the entire Wikipedia article to claims that chronic Lyme does not exist, except to papers co-authored by or panels led by Wormser, Feder, Halperin, and Shapiro; and I was not allowed to point that out.
Excellent. Thanks. This will take me some time to look at in detail, but my initial impression from reading this is that you’ve got a decent set of examples here.
Being from the relevant geographic region, that sounds intuitively implausible. I know lots of people who had Lyme disease, and most of them had symptoms after treatment. I feel as skeptical as if you’d told me that influenza is a genetic disorder.
The claim isn’t though that there aren’t post-disease symptoms. The issues are a) whether they can last for years after (rather than months) and b) if they are caused by still living bacteria.
It seems as though the controversy is over what to call the syndrome, not whether it exists:
http://www.cdc.gov/lyme/postLDS/
Not really. PTLDS is over a much shorter time span than what is often being called chronic Lyme. The claims about chronic Lyme are generally for a disease lasting on the order of years.
There do seem to be cases of that. Recent Lyme-related news suggests that such cases may be caused by repeated infections. This would seem to contradict the “no antibiotics” advice—at least for these patients. These were patients with multiple rashes, though—chronic Lyme disease is supposed to be different from that.
That is another article by Wormser. He studied cases of people who had repeated EM (bullseye rashes). The methodology is actually clever, looking at the OpsC protein. But of course he knows this is going to be cited out of context to imply that people with chronic Lyme are really just being re-infected. As you noticed, the bullseye rash usually occurs immediately after infection. Most people with chronic Lyme don’t get repeated rashes, and this study is irrelevant to them.
This makes sense — people who have gotten Lyme are not much more likely than others to move out of the Northeast U.S. or stay out of the woods, those being pretty much how to avoid exposure.
The article I cited suffers somewhat from sampling error though. You can’t really sample from those with migrating rashes—and then draw conclusions about the prevalence of repeat infections as an explanation for chronic cases.
Also, PTLDS is a way of saying that people have the same symptoms, but you shouldn’t give them antibiotics anymore, because they don’t have bacteria, they have an autoimmune disorder, or crystallized dead bacteria that irritate the tissues, or some other novel, theoretical disorder (which is in every case less likely than the simple alternative that they still have bacteria).
Given that each one of the 6 or so experiments I’ve read about performed in vitro or in vivo show that antibiotics rarely kill all the bacteria, I don’t understand why it’s so hard to believe that some bacteria survive antibiotic treatment.
Would you mind identifying this paper?
The conspiracy theory cuts both ways, though: a common conspiracy theory holds that massive numbers of people are being pumped full of painkillers and drugs that they don’t need by a multinational conspiracy between the drug companies and the FDA.
Even if believing one meant you had to believe the other, that would merely set the drug companies and insurance companies at odds. Which makes sense, given that one is trying to extract money from the other.
It’s conceivable that once there’s a group receiving expensive treatments, there’s a constituency to continue and expand those treatments, but there’s a constituency to not start spending more money on a merely potential constituency.
Some recent coverage of the controversy: http://www.newyorker.com/reporting/2013/07/01/130701fa_fact_specter?currentPage=all