Talk:Lyme disease

The word "chronic" should not be in quotes

Even though chronic Lyme Disease is not a legitimate diagnosis per the IDSA, the word "chronic" should not be in quotes.

There are over 100 studies that demonstrate Lyme Disease itself, and more specifically the causative spirochete can be chronic and persistent with or without antibiotic treatment. These can easily be found with a simple PubMed search (or elsewhere).

Just because antibiotic treatment doesn't perform well after 4 months, does not prove that the infection is eradicated and not persistent. All it proves is that the antibiotics didn't work.

The quotes also make the article look biased against chronic Lyme Disease in my opinion. In my opinion removing the quotes promotes a more neutral point of view.

I tried making the changes, but they were reverted.

Why are the quotes necessary? I think they should be removed again. —Preceding unsigned comment added by 173.74.147.158 (talk) 05:53, 10 November 2010 (UTC)

And I have removed them. Even though it may not be an official diagnosis, it appears to be a valid description of the illness to call it chronic, and there is no need for scare quotes. I have left the quotation marks around the first time the term is used, because it's referring to the term and not the condition. —C.Fred (talk) 05:58, 10 November 2010 (UTC)

The problem is that the phrase "chronic lyme disease" is not a neutral phrase, but one that is widely used (often criminally) as a quack diagnosis in non-RS, and by using the phrase without signalling that it's not a legitimate phrase, we're violating the weight we are supposed to give the mainstream scientific POV as found in RS. We are violating NPOV by giving more weight to unscientific opinions not found in reliable sources, but only in unreliable sources. This principle is embodied in our MEDRS policy, where we give mainstream medical sources priority. To repeatedly use a misleading term without putting it in quotes is to give the quacks and frauds ammunition which they will use to defraud patients. We should use the terms used in RS, and when not doing so it should be made clear we aren't doing so. Maybe we should simply remove most of those instances, and when we are forced to use the phrase, to use words to make it clear, rather than quotes alone. -- Brangifer (talk) 06:39, 10 November 2010 (UTC)

The fact that it is poorly understood and used by criminal quacks is not sufficient to put it into quotes. Mainstream literature does not do it, PMID 18452806. Richiez (talk) 10:39, 10 November 2010 (UTC)

After casting my eye over this debate, I think I lean towards Richiez's opinion. Whether or a not a phrase is misused by non-RS doesn't effect how we use it on WP. NickCT (talk) 15:56, 10 November 2010 (UTC)

This edit seems to ignore the developing consensus. NickCT (talk) 16:14, 10 November 2010 (UTC)

A consensus hasn't formed yet because we're still discussing, and that edit deals with the situation in a very appropriate manner by using the wording from the source, rather than using some editor's choice of words. When in doubt we follow the source. -- Brangifer (talk) 16:34, 10 November 2010 (UTC)

Edit conflict... Richiez, your reference actually makes a good case for us using quotes, since the mainstream uses are instances of debunking, but it also presents another possibility for us. First, let's look at the summary from your source (which should be included in the article):

• "Studies have shown that most patients diagnosed with chronic Lyme disease either have no objective evidence of previous or current infection with Borrelia burgdorferi or are patients who should be classified as having post-Lyme disease syndrome, which is defined as continuing or relapsing nonspecific symptoms (such as fatigue, musculoskeletal pain, and cognitive complaints) in a patient previously treated for Lyme disease. Despite extensive study, there is currently no clear evidence that post-Lyme disease syndrome is caused by persistent infection with B burgdorferi. Four randomized placebo-controlled studies have shown that antibiotic therapy offers no sustained benefit to patients who have post-Lyme disease syndrome. These studies also showed a substantial placebo effect and a significant risk of treatment-related adverse events. Further research to elucidate the mechanisms underlying persistent symptoms after Lyme disease and controlled trials of new approaches to the treatment and management of these patients are needed." PMID 18452806

What we could try (in some cases) is to use the proper term suggested - "post-Lyme disease syndrome". I have already found another instance where "neuropsychiatric Lyme disease" was the description in the source, so I have used it. -- Brangifer (talk) 16:31, 10 November 2010 (UTC)

@Brangifer - Re "A consensus hasn't formed yet because we're still discussing" - So why did you make a change to something under discussion? Anyways, there is a consensus (both here and at Wikipedia_talk:WikiProject_Medicine#.22Chronic.22_Lyme_disease_controversy). You appear to be the only one who is "unsure" about how to proceed. May I respectfully suggest that you self-revert? NickCT (talk) 17:47, 10 November 2010 (UTC)

Do you think that one instance - where I actually improved the wording by removing OR (editorializing) and using the actual wording in the source - should be reverted? I think not. It's a definite improvement and I'm not going through every instance and restoring the scare quotes. Restoring what was there would definitely be a negative for the article by restoring OR. I have every single policy behind that edit. I hadn't seen MastCell's comment, but I appreciate it and think we can move on. -- Brangifer (talk) 18:18, 10 November 2010 (UTC)

Every single policy? Every single one? Really? Well you know what... I have god on my side. So there.

Whatever. I don't care about this topic enough to debate this. I think your editing style is touch aggressive though. NickCT (talk) 18:32, 10 November 2010 (UTC)

Well, I have enough experience here to allow me to engage in a bit of hyperbole....;-) If Since no policy is against that improvement of wording, I assume all policies back it up, especially NOR and V. Otherwise you have basically gotten what you wanted, and that is a removal of nearly all instances of scare quotes. I'm okay with that as the article currently stands. -- Brangifer (talk) 19:12, 10 November 2010 (UTC)

Would it be more neutral if only the mainstream view was represented in the article (leaving out all references to chronic Lyme), and then have a separate section dedicated opposing views? If done right, I think this could help the neutrality of the article. The truth is, there is science on both sides, and Wikipedia should not aim persuade someone to developing a "right and wrong" mentality. I understand Wikipedia follows the mainstream thought and therefore there should be more emphasis on the mainstream views, but it does look to the reader as if these views are the ones that Wikipedia promotes. The opposing views section should be more condensed, and only represent a small part of the article. Does anybody else agree? Or will this not work?

I only suggested removing quotes, because in my eyes, the quotes are both unnecessary and add a biased look. You can agree or disagree with me. I am not saying I am right. —Preceding unsigned comment added by 173.74.147.158 (talk) 18:37, 10 November 2010 (UTC)

Well, the consensus seems to be to leave them out, except the couple of instances where they are necessary, so I'm leaving it as is. As to your suggestion, we've discussed this before quite extensively, IIRC, and determined that it would be a violation of our NPOV policy and an improper fork article. That content is now included in this one, and that seems to work quite well. -- Brangifer (talk) 19:12, 10 November 2010 (UTC)

How about renaming the paragraph into something like "late complications of effectively treated lyme disease" ? I would donate a lead/overview for that. While "post lyme" and "chronic lyme" are widely used neither seems to accurately express the prevailing uncertainty about exact mechanism(s). Also "chronic untreated lyme" is at least of historical interest and needs to be distinguished. Sorry.. I am slow responding these days. Richiez (talk) 12:11, 12 November 2010 (UTC)

That wording ("late complications of effectively treated lyme disease") would suggest a causal link (between the prior Lyme infection and the subsequent symptoms) that would not reflect scientific consensus. "Symptoms experienced after treated Lyme disease" would be more neutral. -- Scray (talk) 16:38, 12 November 2010 (UTC)

I'm a little late. But I looked over over the article once more and in "Post-Lyme disease symptoms and chronic Lyme disease" and "Controversy and politics" there are multiple instances of "chronic Lyme Disease" in quotes. I think using quotes may be acceptable for defining what the term is, but the I think the quotes are overused. - WP:Quotations#Overusing_quotations / WP:Quotations#When_not_to_use_quotations -- 173.74.147.158 (talk) 02:07, 16 November 2010 (UTC)

I went ahead and fixed the overuse of quotes. I think the Wikipedia guidelines support my edit. -- 173.74.147.158 (talk) 02:35, 16 November 2010 (UTC)

Create subsection for misplaced content?

I'm also wondering if the "Controversy and politics" section doesn't more logically belong as a subsection in the preceding "Post-Lyme disease symptoms and chronic Lyme disease" section? After all, the controversy is about its existence, symptoms and treatment. -- Brangifer (talk) 16:31, 10 November 2010 (UTC)

I completely agree. However, I don't think the subsections "Harrassment of Researchers", and "Media and Internet material" fit. Perhaps those can just have their own subsection under Society and Culutre. Does that work? If so, I vote to move it. -- 173.74.147.158 (talk) 23:09, 10 November 2010 (UTC)

That all makes perfect sense. Will you do it? -- Brangifer (talk) 23:14, 10 November 2010 (UTC)

Done. See if you think it works. The Society and Culture section is lacking in my opinion, but not sure what I'd add/change to make it better. -- 173.74.147.158 (talk) 05:26, 11 November 2010 (UTC)

It looks very nice to me. Well done! The article is improved, and that's what we all try to do here. -- Brangifer (talk) 07:35, 11 November 2010 (UTC)

Just for the record, the controversy isn't just about chronic LD, it's also about diagnosis and testing, in early, midstage, and late LD. Also about the recommended treatment regimen(s) for patients once they're diagnosed. For instance, see Greer et al. 2007, PMID 17429088 for an example of how these issues might play out in an individual case, managed strictly according to the prevailing guidelines. (and please don't shoot me, I'm just the messenger. ;-) Happy editing, Postpostmod (talk) 17:24, 17 November 2010 (UTC)

Postscript to my preceding comment: I should have said, the case in PMID 17429088 was managed strictly according to guidelines by the primary care and EM physicians at a community hospital and at MGH, until a particular expert was called in to allow the guidelines to be broken. Just in time: the patient almost died.

Technically, the patient had "no objective evidence of ever having had Lyme disease" at any time in the presented case. The patient didn't have the rash "required" for clinical diagnosis of Lyme disease. Positive PCR evidence is disallowed due to an allegedly unacceptable rate of false positives. The IgM Western blot is not considered valid after the fourth week after onset. The IgG blot was negative by the Dearborn (CDC) criteria, and the positive ELISA is considered irrelevant unless comfirmed by the Western blot.

Therefore, unless that particular expert were called in to override the rules (which he originated), any doctor who treated the patient for Lyme disease would be dangerously liable to ridicule or prosecution by his peers, even in the presence of all the test results reported. Incidentally, I wonder why they didn't say what antibiotics the primary care prescribed for the presumed "virus"? It's a striking omission from the case history. I'd be willing to bet it was 200 mg/day doxycycline for 2 weeks, the standard treatment for early Lyme disease, which he would probably suspect from the symptoms and history, as he's in an endemic area, but would not dare to diagnose. As it's written, it makes the primary care doctor look like a fool (prescribing antibiotics for a virus), but presumably that's preferable to being seen as a "criminal".

If you think I'm being picky and the guidelines either don't say that, or aren't rigidly enforced, read the guidelines (PMID 17029130) carefully, and then look at what is said, and done, to doctors who think they're too rigid and disregard them (for example, the Nature Medicine 2008 article, PMID 18989271) .

Again, please don't shoot the messenger...;-) Best wishes, Postpostmod (talk) 19:03, 23 November 2010 (UTC)

I can assure you that no physician would ever be disciplined by a medical board for treating a critically ill, hospitalized patient with a short course of ceftriaxone for a suspected diagnosis of neuroborreliosis, even if the guidelines were not met to the T. The physicians who have been disciplined operate well outside those boundaries, as I'm sure you are aware. Comparing the two situations makes sense only as a rhetorical, point-scoring gesture, not as serious commentary. Additionally, you're playing fast and loose with the PCR criteria (as Scray mentions below), and you're ignoring the finding that actually clinched the diagnosis of neuroborreliosis: the production of antibody in the cerebrospinal fluid, which was present in this case and is specifically highlighted in the guidelines. So I think you're off-base in trying to cite this case to make your point. MastCell ^Talk 00:50, 24 November 2010 (UTC)

I just read those reports, and while I agree with some of the points you highlight (they could have started treatment before the diagnosis was certain, as doctors often do), some of your characterizations seem inaccurate:

• Nowhere in PMID 17429088 does it say that anyone was bound by guideline, nor that the expert that was called in saved the day. Both Dr. Steere (I assume this is the expert to whom you refer) and the case discussant said that diagnostic testing came in on day 11 at MGH that established the diagnosis.
• Positive PCR evidence is not disallowed. Here is a quote from that guideline (PMID 17029130): "Amplification of B. burgdorferi DNA in CSF using PCR by a laboratory with excellent quality control can also be useful [103, 124, 167], but few laboratories are capable of accurately performing this test. In the absence of erythema migrans, neurologic manifestations are too nonspecific to warrant a purely clinical diagnosis; laboratory support for the diagnosis is required." According to the report you cited, when laboratory evidence (including PCR) was available, the diagnosis was made and treatment was started.
• Those reports do not say that the guidelines you cite are rigidly enforced. They are not laws - just guidelines - and physicians use their judgment all the time.

I do agree that the omission of the type of antibiotics prescribed by the primary care physician should have been included on the first page. I think it's important that we stick to facts and avoid hyperbole. -- Scray (talk) 00:11, 24 November 2010 (UTC)

The priceless moment in that case report occurs when the diagnosis of neoplastic meningitis is considered: "An important part of our evaluation of this patient was review of the cerebrospinal fluid findings with a pathologist. This consultation occurred urgently on a Friday afternoon in the summer." You can hear the disbelief that a pathologist was actually located and convinced to review the CSF on a Friday afternoon. In the summer. I mean, even if a patient is in a life-or-death situation, I think most pathologists would agree that it's uncivilized to expect someone to work into the afternoon on Fridays, especially when it's nice outside. :P MastCell ^Talk 00:26, 24 November 2010 (UTC)

I’ll answer Scray first, as that post seems to be chronologically first, despite its position in the thread.

Hello, Scray, nice to meet you. Thanks for your detailed and civil response to my comment, and for taking the time to read the articles.

I’m sorry about the length of the following comment; it seems my previous one was insufficient, and I can’t know exactly where our knowledge bases fail to coincide. So I have no choice but to provide a multitude of detail and hope that some of it helps bridge our gaps.

Your first and third comments bear on whether following the guidelines is truly optional, or mandated (in the de facto sense). I hope guidelines are optional in other diseases, but unfortunately this isn’t the case in Lyme disease (LD). Doctors who break with the guidelines multiple times are liable to prosecution by their state medical boards, which is why four endemic states have passed “physician protection bills”. As MastCell rightly says, a doctor or a team can get away with it if they do it rarely, but since the disease isn’t rare in the Boston area, most doctors have responded to the situation by simply believing that the guidelines must be accurate or they wouldn’t exist, and therefore that they are acting responsibly by following them to the letter.

With regard to PCR, I guess the sentences you quoted from the guidelines would seem not to preclude the use of PCR results obtained from the unspecified “few laboratories” that are thought to be accurate. In practice, PCR results have often been discounted in the literature unless they are performed, or commissioned by, an academic laboratory run by one of the guidelines’ authors. (Weird but true). For example, the MGH in-house laboratory neither performs these tests nor sends them out. [1].

I’ll go on to discuss the CSF antibody situation, which has similar political issues. For example, MGH only offers CNS serology as a send-out test, and ONLY sends it out if a parallel serum sample has previously tested positive (by ELISA, presumably) in-house. This probably accounts for the long delay in getting these results (day 11 of hospitalization), which were the first guideline-acceptable “objective evidence” that the patient had LD (the previous tests are all technically considered insufficient, as I said above.) It need hardly be said that it’s a good thing the guidelines were broken to start treatment on day 5, a day after dyspnea and dysarthria developed. This is the kind of dilemma that the guidelines provoke, rather than help to solve.

Thanks again for your thoughtful comments. Let me know if you want further references to back up my statements. Best wishes, Postpostmod (talk) 16:42, 28 November 2010 (UTC)

I'll assume that we're here to understand the tone of the field, so comments on specific institutions are just to inform our edits to the article overall (else this does not belong on this talk page). Your statements regarding the MGH and testing using PCR seem to be at odds with the reality that the PCR test was done on this case from MGH. I point this out to underscore the reality that guidelines are not laws, and physician judgment is given wide latitude. In particularly severe/rapidly progressive cases, the guidelines need not be followed if the physician is willing to defend their actions before peers. In the case you're highlighting, the PCR was clearly sent even though the link you provide indicates no mechanism for doing so. Whether earlier treatment would have improved the outcome in this specific case is purely a subject for speculation (therefore it does not belong here), but the guidelines would not prevent a physician at MGH from prescribing Lyme-specific treatment as soon as the suspicion was high, particularly if that decision were made by consensus (this won't protect an individual practitioner who consistently violates clear guidelines despite warnings from a medical board). It really is a pleasure chatting with you - but I have a sense we should be mindful of the setting in which this discussion is occurring, and should stick to the subject, which is the article. -- Scray (talk) 20:06, 28 November 2010 (UTC)

Hi, MastCell. Hope you had a nice Thanksgiving (if you’re in the US, that is). Regarding your first comment above, I read the talk page guidelines and some essays for help responding, and I think I’d better just swim away. No hard feelings. I think I addressed your factual concerns in my answers to Scray.

Regarding your second comment – yes, that is a gem. A Friday afternoon in the summer, indeed.

I’ve obtained and read the two books about medical culture you recommended in our discussion on your talk page. Did you get a chance at Groopman’s How Doctors Think yet? I’m looking forward to resuming a friendly discussion there, when this one winds down. As always, best wishes from the loyal opposition, Postpostmod (talk) 22:32, 29 November 2010 (UTC)

Hello Scray, thanks for responding, and for your friendly tone. We seem to be talking past each other on whether LD PCR results that will be considered acceptable by the most influential LD researchers are possible to get, as you rightly point out they are, or are made inconvenient and slow to get by institutional factors, as I rightly point out.

Concerning the guidelines being voluntary, I just realized that I’m unintentionally hitting a nerve by suggesting that doctors are limited in their autonomy. It won’t change the point of my comments if we say the guidelines are “highly influential” rather than "mandatory".

These are mostly, I think, semantic and cultural problems. I’m a scientist, not a doctor, so it’s likely that I’ll unwittingly violate from time to time some of medicine’s internal idiom and social context. I'm sorry about any discomfort this might cause.

Regarding the relevance of the topic to improving the article, yes, part of it is in regard to the tone of discourse in the field, and in the article, neither of which meet WP standards of “impartial tone” as described in WP:NPOV. But specifically, my comment was made to correct the impression that the controversy is only about chronic LD, as Brangifer said, above, in his (implemented) suggestion to subsume the controversy under the chronic LD section. It’s broader than that, as well as clinically relevant, as this case study suggests. Since the article falls under WP:MED, it can only be corrected with permission from that group.

I’m glad you’ve enjoyed our discussion, I have too. If you’d like to discuss science relevant to LD, or medical culture, or epistemology in general, please drop me a note on my user page. Best wishes, and thanks again,Postpostmod (talk) 16:56, 4 December 2010 (UTC)

New government study, and the government's position

My wife is steadily weakening from chronic lyme disease, and I think my disgust with this article is or should be well known. However, there is a new government study just out.

In [2], over the period of 1999 to 2003 (when most doctors probably couldn't spell Lyme, let alone recognize it), "there were 114 records listing Lyme disease as a cause of death" of which "23 records showed the disease as the underlying cause."

Further down, "According to the CDC, ... a 'small percentage' of those treated with antibiotics report symptoms that last for months to years, including arthritis pain, memory problems and fatigue." So the CDC admits that the chronic lyme disease condition can exist.

Further, "As for the lethality of Lyme disease, it is plausible that certain documented long-term effects of Lyme disease could contribute to some deaths, according to Dr. Kevin S. Griffith of the CDC's National Center for Emerging and Zoonotic Infectious Diseases."

Critics of course noted that the CDC made no attempt to look at deaths that may have been from Lyme but weren't recognized as such. Since so much effort was then placed on diagnosing the condition as anything but Lyme, one would have thought that an honest effort to do so would have been made by the CDC.

It was added that "There is, however, no proof of that in the scientific literature, Griffith said." Just in the suffering and dying patients. I'd like to see a study of deaths where the CD-57 test results were available. Simesa (talk) 11:38, 12 January 2011 (UTC)