Talk:Chronic Lyme disease

Implications for treatment

It is not valid to sneak POV into this page by saying there is "no evidence" for persistent infection, when that evidence is quite clearly documented at Lyme_disease_microbiology.

It is also POV to say that we need a better definition for "post-lyme syndrome" - this is a statement right out of the IDSA guidelines. It presumes that "post-lyme syndrome" is in fact what we are dealing with, when the heart of the controversy is whether it is appropriately considered "post-lyme syndrome" or chronic infection.

Let's explain the controversy, not push sides. 75.41.71.106 14:10, 26 April 2007 (UTC)

I disagree. There is no consensus on whether there is on going infection or autoimmune reaction in the chroinic lyme page. May be different scenarios in different patients. This page is already 100% POV in the direction of persisting infection, when post lyme syndrome (meaning antibiotic refractic) is a real condition. Not all patients respond to antibiotics, even years of it. {67.82.232.151 18:39, 26 April 2007 (UTC)}

The page is not 100% POV in persisting infection; it explains the position of IDSA quite clearly. Meanwhile your previous edit was that there was NO evidence of persisting infection, so your POV is blatant especially given the evidence outlined at Lyme_disease_microbiology#Mechanisms_of_persistence.

This is key: the term "post-Lyme syndrome" does not simply mean antibiotic refractic. It suggests that the infection has been eradicated. VERY different, and that is at the heart of the controversy.

The point is that both sides have to be explained, and neither should be presumed correct. This means that "post-lyme syndrome" - a term newly pushed by IDSA with implications you failed to acknowledge - is not a given. You say antibiotic failures prove the existence of "post-Lyme syndrome." But ILADS argues that failure (particularly short-term) can mean ongoing infection, which is clearly not "post-Lyme". Even if long-term antibiotics do not work, this does not prove the infection has been eradicated when one considers the evidence that persistent infection sometimes occurs even despite long-term therapy. Some of this evidence was authored by several of the IDSA authors themselves, ironically enough. And I completely agree that there may be different scenarios for different patients. (I'd suspect ILADS would agree with you on this as well, whereas IDSA insists that ongoing infection is extraordinarily rare if it exists at all.)

Now I am not saying ILADS' view is correct, just that there are indeed two valid positions with support in the medical literature, and that "post-lyme syndrome" and "no evidence of infection" are terms that reflect only IDSA's position. That needs to be put in context, since this is an article on the controversy.

Please be aware that this is an encyclopedia, not the journal of the IDSA. In order to keep WP:NPOV, competing views need to be presented as such. The existence of something called "post-lyme syndrome" is reflective of ONE side, same with chronic infection. 75.41.71.106 20:40, 26 April 2007 (UTC)

Looking at the page again, "PLS" in the intro is entirely inappropriate as the sentence concerns the likelihood of a chronic infection existing -- such a chronic infection would NOT be PLS by the IDSA's own definition. Please see their guidelines, Table 5, for exclusions. 75.41.71.106 21:19, 26 April 2007 (UTC)

Chronic Lyme and Post Lyme syndrome

Perhaps there's some confusion here. I removed lines like "Patients with PLS may or may not have serologic evidence of continuing spirochete infection" for this reason: PLS by definition means no continuing infection. Evidence of infection is one of the exclusionary criteria. The IDSA's proposed PLS definition is not meant to encompass all late-stage lyme, just patients without ongoing infection. Since they don't believe in persistent infection, that's pretty much everyone who stays sick. If you don't believe me, please see the IDSA guidelines at [1], especially Table 5.

It's not anyone's place to talk about what evidence is convincing. This article is meant to describe the two positions, not what doctors or patients should do (i.e. no judgements and declarative statements about whether or not things "may persist" when the point of this page is to describe two sides). Please see WP:NOR.

I also found the comparison strange between no consensus on treatment for "chronic Lyme" and no treatment recommended at all for PLS. That's not parallel; in one case ILADS recommends antibiotics and IDSA doesn't, in the other case IDSA proposed a new "syndrome" with no treatment. 75.41.71.106 21:19, 26 April 2007 (UTC)

Reply:

The subject is broader than IDSA vs ILADS. Lyme is global, no just in the U.S., though the U.S. usually sets the international standards for treatment.

PLS does include ongoing infection by IDSA guidlines, and "symptomatic therapy" is suggested (unfortunately no symptomatic therapies are mentioned in either IDSA or ILADS guidelines). PLS and chronic lyme are now considered one and the same by IDSA.

I am trying to delineate that chronic lyme (continuous infection) and post lyme syndrome ("autoimmune") can both exist. It's not necessarily one or the other and needs to be reviewed on a case by case basis until more is known about the infectious agent, its subspecies and human host responses. That is the broader view and takes in all the science available without going into specifics. {67.82.232.151 00:38, 27 April 2007 (UTC)}

Fallon study

I am concerned about the manner in which Brian Fallon's 2004 randomized trial is discussed on this page. Apparently, this data has never been published, athough it was orally presented at a research conference. The section on this page makes claims which are not present in the only written reference cited (the LDA press release). Because those claims are not published, they fail the Wikipedia policy requiring content to be verifiable. I am not an expert on the topic of chronic lyme disease, and this is not intended as an attack on the science or the scientist - I merely point out that scientific claims should not be included on wikipedia until they are published. -Rustavo^{Talk/Contribs} 01:55, 9 May 2007 (UTC)

---

May I point out to Rustavo that numerous industry studies were published attesting to the safety of smoking during the 1960s. In fact, medical dent students were required to answer yes to a test question "is smoking is safe" on exams back in the 1970s..... a test question which was clearly misguided and wrong based on many "published studies..." Studies which turned out to be bogus.

So, my friend, publication does not necessarily indicate the merit of a study. Reputation of the scientist is of the utmost importance, and Fallon has been widely published in numerous journals and he is considered to be an expert on neuroborreliosis. His findings were delivered at a reputable conference. I question the validity of your concern about Fallon, and frankly would be interested in knowing the motivation, since you are admittedly not an expert on Lyme disease..

Perhaps you could employ your sharp editorial efforts on a Wikipedia subject like "Hormone Replacement Therapy," which is much more poorly footnoted and documented than this page is.. (only 4 weak footnotes on a page that has serious health implications for hundreds of thousands of women......)

I might point out that Hormone Replace Therapy has recently been indicated in a large number of cancers and has had great impact in public health, so I question why so many admitedly uninformed individuals are so interested in the Lyme treatment debate, when patients with neuroborreliosis are clearly benefitting from treatment as many studies have shown.

It seems quite odd, given the many other health concerns out there and the many other poorly documented/footnoted medical sites on Wikipedia.. It would be wonderful if we could explain our motivations for changes here... Thank you, Freyfaxi 20:06, 19 May 2007 (UTC)

I will answer your personal questions about me on your talk page. Please try not to turn these discussions into personal attacks - remember that assuming good faith is a fundamental principle of Wikipedia. -Rustavo^{Talk/Contribs} 03:23, 20 May 2007 (UTC)

Table

The two standards of care table is very hard to read and leaning towards POV. I think a general description of the debate is better, and that the table be removed and substituted with a more traditional format. I will wait on making changes (changes I make will be format, but keep wording verbatim), until this comment is responded too. If not responded within a week I will go ahead with changes. (Fredweis 17:41, 14 May 2007 (UTC))

I haven't really contributed to this page, but from having worked on pages with similar medical controversies, I can say that the most difficult task is keeping one side from trying to overwhelm the other with volume of writing - the result is an overlong, rambling, and unreadable article. Although the table is unconventional, I think it is actually quite readable and keeps things concise & balanced. You might want to look back and see what the discussion & issues were that lead to its creation in the first place - it may be a necessary evil. -Rustavo^{Talk/Contribs} 17:48, 14 May 2007 (UTC)

OK, now I have contributed to the page :-) -Rustavo^{Talk/Contribs} 19:00, 14 May 2007 (UTC)

I know the topic quite well, the info inside the table "leans" to POV, its not terribly brash conjecture by any means, its well cited material, just its presentation is a bit POV. I think a summary of the opposing view points may be better, and then have the table beneath. My dislike of the the table is there is a lot of info squeezed in the boxes. A summary with quotes, and the table displaying more simplified info may be more easily readible(Fredweis)

OK, but whatever new format you come up with, it would be good to have some built-in constraint on the relative amount of content for each "standard of care." -Rustavo^{Talk/Contribs} 22:32, 15 May 2007 (UTC)

The table is a VERY important source of information for Lyme sufferers and for the scientific commmunity in general. Science is a process of debating different theories and hypotheses with the scientific method. Might I remind readers here that the scientific "herd" is not always ultimately correct, especially when large research grants disort rational thinking processes and stymie the free flow of information. As I recall, the world did not turn out to be "flat..." though all reputable thinkers of the day insisted that it was flat. I vote that the detailed table REMAIN here, or preferably be reinserted back into the main Lyme disease page-- which is where it belongs in the first place. Those of you who wish to censor this information will not ultimately prevail in your attempts. Scientists in Europe are currently in the process of proving the persistent infection hypothesis and congenital transmission has already been documented. I would be happy to provide the footnotes. Thank you. Freyfaxi 19:03, 19 May 2007 (UTC)

Has nothing to do with censorship, there is NPOV literature in the table, such as the term "circular reasoning", whether true or not, this is not a presentation of facts, but someone's representation of the facts. Plus the table takes up almost the whole article. It needs to be more concise.

Jay Sanford's 1976 paper noting persistence of infection, published in the Biology of Parasitic Spirochetes.

Hi, I have inserted the following paragraph proving that military doctors had a consensus regarding persistent infection of the borrelia spirochete in the brain and eye as early as 1976:

About the time that the Lyme epidemic was identified in the 1970s, Dr. Jay Sanford, a former Walter Reed Army Institute of Research doctor, published a 1976 paper in a book titled “The Biology of Parasitic Spirochetes.” In it, Dr. Sanford stated: "the ability of borrelia, especially tick-borne strains, to persist in the brain and in the eye during remission after treatment with arsenic or with penicillin or even after apparent cure, is well known.” Although the notion of persistent neurological infection was identified early on by military researchers such as Dr. Sanford, later Lyme researchers curiously denied the possibility of persistent borrelia infection in the brain, with many researchers ignoring repeated evidence of persistent infection.

Before contesting the above paragraph for unknown reasons, please provide SOLID scientific evidence with footnotes proving that Mr. Sanford's early assertion about persistent infection is WRONG. It is not acceptable to delete a scientific a footnote without evidence to the contrary. Please also provide scientific proof that the syphilis spirochete, a relative of the borrelia spirochete, does NOT persist as an infection in the brain. Please provide footnoted evidence to the contrary BEFORE you plan on contesting this paragraph. Thank you, Freyfaxi 18:46, 19 May 2007 (UTC)

Sanford says "Borrelia", he does not delineate between borrelia burgdoferi sensu lato (lyme) or borrelia of the relapsing type (borrelia recurrentis). The statement needs more context. Also the statement predates the Lyme controversy, so it is not particularly relevant in the contemporary argument. There is plenty of hard evidence of persistent borrelia burgdoferi sensu lato infection on Lyme disease microbiology page. Access to the article would be nice if you could post it. (Fredweis 23:44, 19 May 2007 (UTC))

University of Graz co-trimoxazole and roxithromycin treatment study: 76% recovery rate

Here's just one of many european studies asserting the benefit of extended antibiotic treatment for those with chronic infection. This kind of study coming out of Europe is very important for those who suffer. Thank you.

Oral treatment of late Lyme borreliosis with a combination of roxithromycin and co-trimoxazole--a pilot study on 18 patients. • Gasser R, • Reisinger E, • Sedaj B, • Horvarth R, • Seinost G, • Keplinger A, • Wendelin I, • Klein W. Department of Internal Medicine, University Graz. In this pilot trial, 18 patients participated in an investigation in which the combined therapy of co-trimoxazole and roxithromycin in late Lyme borreliosis was tested. The study has been performed as a result of earlier case reports in "The Lancet" where this combination has been used successfully in order to thwart late Lyme disease. The authors show that 76% of the patients recovered completely. In 2 patients, symptoms could be resolved with i.v. penicillin and 2 did not respond to any antibiotic therapy. These results show that oral therapy of co-trimoxazole and roxithromycin in combination provides similar results as i.v. antibiotics in earlier studies. PMID: 8798283 [PubMed - indexed for MEDLINE] Freyfaxi 19:25, 19 May 2007 (UTC)

This page has only been posting randomized studies, which the above is not, its an observational study, which the guidelines have not taken into account, they could be posted under a new heading for observational studies. There are some other studies worth posting here:

• Randomized placebo-controlled Studies

Steere, 1985 - 40 patients with established Lyme arthritis were randomized to receive weekly IM injections of benzathine penicillin or placebo. 35% of the treated patients had complete resolution of their symptoms and remained symptom-free during a mean follow-up period of 33 months. None of the placebo treated patients improved. As compared with nonresponders, penicillin responsive patients were more likely to have received antibiotics for early Lyme disease and less likely to have received intra-articular steroids.

• Randomized Trials:

Dattwyler, 1988 - 23 patients with clinically active late Lyme disease were randomly assigned to IV treatment with either penicillin or ceftriaxone. Of the 10 treated with penicillin, 5 were judged treatment failures; of the 13 who received ceftriaxone, only 1 patient did not respond. An additional 31 patients were subsequently treated with ceftriaxone with similar results. Patients that were unresponsive to ceftriaxone were more likely to have received corticosteroid treatment.

Pfister, 1989 -21 patients with radiculitis or neuroborreliosis associated with Lyme disease were randomized to receive a 10 day treatment with either IV penicillin G or cefataxime. There were no differences in the outcomes of the two groups. See Pfister, 1991 below.

Hassler, 1990 -135 patients with late-stage Lyme disease were randomized to receive IV penicillin G or IV cefotaxmine for 10 days. Cefotaxamine was significantly more effective than penicillin G with 87.9% vs 61.3% reporting full or partial remission of symptoms 24 months later.

Pfister, 1991 -33 patients with Lyme neuroborreliosis were randomized to receive a 10 day course of either IV ceftriaxone or Cefotaxime. Neurologic symptoms improved or subsided in 26/30 patients-there was no difference in treatment groups. At a mean follow-up of 8 months, 17/27 patients were clinically asymptomatic. Bb was isolated from the CSF of one patient 7 months after ceftriaxone therapy. Since 10 patients remained symptomatic, the authors concluded that a prolongation of therapy might be necessary.

Steere, 1994 -38 patients with Lyme arthritis were randomly assigned to 30 days of treatment with either doxycycline or amoxicillin plus probenecid. Patients who had persistent arthritis 3 months following treatment were given IV ceftriaxone for 2 weeks. 16/18 of the patients treated with amoxicillin and 18/20 treated with doxycycline had resolution of arthritis symptoms within 3 months of treatment. However, neuroborreliosis later developed in 5 patients. Of 16 patients with persistent arthritis who were treated with IV ceftriaxone, none had resolution of arthritis within 3 months. The authors concluded that even with resolution of specific manifestations of Lyme disease with oral antibiotics, there is still a risk of developing additional symptoms of Lyme at a later time. Persistent arthritis may be related to an autoimmune phenomenon (although they did not rule out persistent infection with PCR or culture). Others concluded that 2 weeks of IV ceftriaxone may be insufficient to address Lyme arthritis.

Wahlberg, 1994 -100 consecutive late-Lyme disease patients were treated with different antibiotic regimens and followed up for 12 months after treatment. Treatment outcome was successful in 4/13 patients treated with IV ceftriaxone for 14 days, 50/56 patients treated with ceftriaxone followed by 100 days of amoxicillin with probenecid, and 19/23 of those treated with IV ceftriaxone for 14 days followed by 100 days of cephadroxil.

Okski, 1998 -randomized 60 patients with disseminated Lyme borreliosis based on CDC diagnostic criteria to receive either cefexime and probenecid orally for 100 days or ceftriaxone IV for 14 days followed by oral amoxicillin and probenecid for 100 days. The immediate outcome after antibiotics was not different between the two treatment groups. However, after a year of follow-up, there were significantly greater relapses, treatment failures, and positive PCR tests. The results of this study support the use of intravenous antibiotics along with prolonged antibiotic therapy in patients with late-stage Lyme disease.

Fallon, 1999 -studied 23 Lyme patients who complained of persistent memory difficulties after IV antibiotic therapy of 4-16 weeks. Four months after their initial treatment, 18 of the patients received additional IV antibiotics and compared with the others who did not receive additional antibiotics. Those receiving additional IV antibiotics scored better on cognition tests, greatest functional improvement in energy, pain, and physical functioning than untreated patients. Based on the results from this pilot study, the authors concluded that there was enough evidence to plan a larger study investigating the utility of repeated courses of IV antibiotics (see Fallon, 2004).

Logigian, 1999 -a series of 18 consecutive patients with Lyme encephalopathy and symptoms of memory difficulty, minor depression, somnolence, or headache were treated with 30 days of IV ceftriaxone. At the beginning of treatment, 89% had abnormal memory scores, 89% had CSF abnormalities and all tested had perfusion defects on SPECT scan. Six months after treatment, memory scores were significantly improved, CSF protein levels were significantly less, and post-treatment perfusion was significantly improved. 12-24 months after treatment, all patients rated themselves as improved or back to normal.

(Fredweis 23:51, 19 May 2007 (UTC))

NEJM article

I added an external link to an NEJM article. Maybe someone more knowledgeable can incorporate the conclusions into the article itself? JH-man 12:11, 5 October 2007 (UTC)

POV tag

This article reads like a press release from ILADS. I changed some things but there is still alot to do. The views of Raphael Stricker get more weight here then the entire medical community. Yes there is real controversy but it is not fair to allege stuff against IDSA when you ignore the ILADS conflict of interest, they are the ones that get rich treating people with no evidence of infection with multi thousand dollar transfusions of stuff that is not proven to help them. And they want insurance to pay for it. This artcile needs some neutral eyes I will help for a while, I have no position on Lyme one way or another but it is obvious what the real mainstream medical one is and that needs to get more weight than a few hundred doctors who advocate chronic lyme for their livelyhood. RetroS1mone talk 13:10, 17 June 2008 (UTC)

POV section on testing

I have moved this section b/c it is just "Test says this, one sentence, ILADS critics say this, several paras". I don't see how to improve it w/o re writing. Go for it, here it is:

Testing

The debate over Lyme disease testing remains a heated one, with concern over both false-positives and false-negatives (see Lyme disease#Diagnosis). Tests currently rely on indirect methods of detection (i.e. the body's immune system response), because it is very difficult to culture the bacteria directly from patients. Specific issues with regard to the testing controversy include the following:

• Sensitivity of the CDC's testing protocol.

Critics argue that the CDC's 2-tiered testing protocol (ELISA test, followed by confirmatory Western blot test if positive or equivocal) misses many patients who are infected. This criticism is not without merit. Several studies have examined this question and found that as many as 50 percent of definite Lyme Disease as defined by the presence of Borrelial DNA or Borrelial culture were negative when tested against the CDC's recommendations. Such studies have included both early and late stage Lyme Disease patients. A study from the College of American Pathologists concluded that "these tests will not be useful as screening tests until their sensitivity is improved."

• Inadequate lab standardization.

Standardization of testing has been found to be inadequate, with a high degree of interlaboratory variability.

• No diagnostic gold standard to determine sensitivity of tests in late disease.

Without a diagnostic gold standard to identify those with chronic Lyme disease, circular reasoning becomes a problem in studies that evaluate the sensitivity of serologic tests for this population. Bias is unavoidable if subjects are selected by CDC criteria, since late-stage patients must have tested positive previously in order to qualify for a study. In a study cited by the CDC to defend the tests' validity, the authors acknowledge this risk of selection bias.

False Negative Tests

False negative test results due to the following, particularly in late and chronic Lyme disease:

• Immune system evasion by Borrelia burgdorferi.

Intracellular sequestration, antigen variation, immune suppression, the formation of immune complexes, and predominance of cystic forms have all been cited as reasons for seronegativity in late and chronic Lyme disease (see Lyme disease microbiology#Mechanisms of persistence).

• Positive test criteria is based on early Lyme disease.

The CDC's criteria for a positive Western blot were developed based upon on a study of patients with early Lyme disease. The serologic response of patients with late-stage Lyme disease was not analyzed and incorporated, despite that fact that such cases require a positive Western blot for diagnosis by CDC standards.

• Specific markers for late-stage Lyme disease left out.

Several highly specific antibody bands for Lyme (31-kDa and 34-kDa, corresponding to outer surface proteins A and B) were not included in the CDC criteria for a positive Western blot because they only appear late in the disease. These bands which have not been included on the CDC Western Blot are so specific to Borrelia Burgdorferri that they are being used/studied for the development of a Lyme Disease vaccine. As a result, the vast majority of laboratories do not report these bands, even if they are positive. This is one reason some clinicians use laboratories that specialize in tick-borne disease, as they usually report all antibody bands.

• Tests based on only one strain.

Current tests at most laboratories are based on only one strain of Borrelia burgdorferi (the B31 strain is used in the U.S.) despite the fact that there are over three hundred strains worldwide and over one hundred in North America (see Lyme disease microbiology). Several studies have found that this practice can lead to false-negatives - another reason some clinicians use tick-borne disease specialty labs, which utilize multiple strains of Borrelia burgdorferi in the preparation of test kits.

False Positive Tests

Many physicians believe that Lyme disease is over-diagnosed and over-treated. One of the most widely cited studies from critics of Lyme Disease was written by Allan Steere. His study, published in JAMA concluded that 57% of patients diagnosed with Chronic Lyme in an endemic area did not actually have the disease.

comparison table

My opinion, the comparison table of ILADS vs IDSA is still misleading and has to get alot of work. I made some changes, please help! First it is not ILADS vs IDSA it is ILADS vs the rest of medicine. And it needs so many references for statements. Can we put a statement, it is not meant to say these are equal view, ILADS is a fringe group? RetroS1mone talk 03:58, 1 July 2008 (UTC)

• I say this article is a nearly unsalvagable POV fork, and should probably be deleted. Phlegm Rooster (talk) 05:35, 5 July 2008 (UTC)

I see no evidence to characterize ILADS as a "fringe" group when current and past presidents have been published in major medical journals. And given Attorney General Blumenthal's recent findings regarding the IDSA, it would seem especially inappropriate for Wikipedia to endorse one view over the other. Besides, User:RetroS1mone, I thought you had "no position" on Lyme disease? -Bapb (talk) 21:33, 6 July 2008 (UTC)

Blumenthal

I added the actual findings from Blumenthal's investigation, because although this (now pro-IDSA POV) article implies that Blumenthal is mysteriously under the sway of a few physicians and advocates, he is in fact the Attorney General of the State of Connecticut. The findings of an investigation by his office is certainly relevant information. The IDSA press release remains as a response, and if someone would like to elaborate on the IDSA's response with more specifics (keeping in mind WP:NOR), go ahead. Bapb (talk) 21:22, 6 July 2008 (UTC)

I reverted bc the AG's opinions are opinions and allegations not findings. The legal system works this way, the AG makes allegations, files charges, there is a trial, a judge or a jury finds guilty or not. AG versus IDSA there was a settlement, no trial no findings, no admission of guilt. Innocent until proven guilty is for IDSA like everyone. May be the allegations are notable but it's not about IDSAs science anyway. RetroS1mone talk 21:33, 6 July 2008 (UTC)