Talk:Chronic Lyme disease/Archive 2

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Archive 1

Archive 2

Neutrality

Yup, WP:NOTAFORUM. If you've got something useful backed up by MEDRS, feel free to come back. Black Kite (talk) 20:10, 20 June 2018 (UTC)

This article is in my opinion in need of a good edit. It doesn't cite any sources that believe in chronic lyme disease, such as ILAADS, nor does it follow Wikipedia's neutrality policy by avoiding heavily slanted language, such as when it uses the term "generally rejected diagnosis". I would prefer if it said it was "a controversial diagnosis" and had citations to both ILAADS and IDSA. — Preceding unsigned comment added by Healthsupporter (talk • contribs) 20:47, 18 June 2018 (UTC)

See WP:GEVAL. Wikipedia isn't going to lend credence to discredited nonsense. Alexbrn (talk) 20:49, 18 June 2018 (UTC)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3548099/ would be a good start, but I doubt the owners will allow it. 2603:3023:312:E200:A09A:2576:C045:6662 (talk) 19:44, 19 June 2018 (UTC)

"Research papers that describe original experiments are primary sources. However, they normally contain introductory, background, or review sections that place their research in the context of previous work; these sections may be cited in Wikipedia with care" (https://en.wikipedia.org/wiki/Wikipedia:Identifying_reliable_sources_%28medicine%29#Biomedical_journals) 2603:3023:312:E200:A09A:2576:C045:6662 (talk) 19:53, 19 June 2018 (UTC)

Not WP:MEDRS. Alexbrn (talk) 19:54, 19 June 2018 (UTC)

So the main page for identifying reliable sources isn't as valuable as the one you prefer? 2603:3023:312:E200:A09A:2576:C045:6662 (talk) 20:02, 19 June 2018 (UTC)

https://academic.oup.com/ije/article/34/6/1340/707361 2603:3023:312:E200:A09A:2576:C045:6662 (talk) 20:02, 19 June 2018 (UTC)

13 years old when we have newer sources? Again see WP:MEDRS. Also neither of these articles are even about "chronic Lyme disease" (this source is already used here about PTLDS). Alexbrn (talk) 20:11, 19 June 2018 (UTC)

You raise a valuable point: What distinction, if any, can be drawn between the two? How would you characterize the differences between "chronic Lyme" (which is supposed to be a complete crock of shit) and PTLDS (a chronic condition which develops after the acute infection)?

The article makes only this one reference, then never returns to the subject -- but repeatedly mocks the idea that "chronic Lyme disease" could exist after the acute infection. It also makes no clear differentiation that I could see between "chronic Lyme" and PTLDS. As it stands, the article overwhelmingly comes across as "You're a conspiracy-driven 'leftist' moron if you think Lyme disease persists after the acute infection". 2603:3023:312:E200:ED7D:5CEF:1446:2A1D (talk) 10:06, 20 June 2018 (UTC)

This page is WP:NOTAFORUM. We follow decent sources and per the CDC while PTLDS describes the recognized lingering problems after treatment, chronic lyme disease is the term used for the bogus condition which exists only in the crankosphere. Alexbrn (talk) 11:27, 20 June 2018 (UTC)

The distinction seems clear: the idea of chronic infection with borrelia spirochetes, and the cottage industry of quack treatments around it, seems to be entirely unsupported by any credible evidence. Post-Lyme syndrome is well documented and consistent with what is known of other analogous conditions. The core issue is the fraudulent use of long-term antibiotics, and the legislative alchemy that protects these charlatans from discipline by medical boards. Guy (Help!) 11:31, 20 June 2018 (UTC)

Guy, thank you for unintentionally revealing the truth: You're describing treatment of PTLDS as quackery, and calling PTLDS "chronic Lyme" to escape being contradicted by the verifiable facts of the matter. 2603:3023:312:E200:ED7D:5CEF:1446:2A1D (talk) 19:56, 20 June 2018 (UTC)

It takes a special kind of chutzpah to claim that elaborating fact-based contradictions to a woefully-POV article falls under WP:NOTAFORUM. 2603:3023:312:E200:ED7D:5CEF:1446:2A1D (talk) 20:14, 20 June 2018 (UTC)

Added citations and additional information to this article. Did not remove any existing information. Healthsupporter (talk) 22:38, 22 June 2018 (UTC)

this added content sourced to a primary source -- see the definitions in WP:MEDDEF. We generally don't generate content about health based on primary sources, for a bunch of reasons. Jytdog (talk) 22:56, 22 June 2018 (UTC)

This article clearly lacks neutrality. Moreover, most of the sources which question the reality of existence chronic Lyme disease are outdated. There are quite a lot of publications which work on detecting and treatment of chronic Lyme disease. For example https://arxiv.org/pdf/1302.2961.pdf Even some doctors question it existence it doesn't they are right. — Preceding unsigned comment added by 81.230.34.63 (talk) 22:08, 24 June 2018 (UTC)

Please add some information to this article

Please add a link to "Willy Bergdorfer" in the See Also section.

Please add an excerpt from the New York Times review of "Under Our Skin" in the Media section.

Although the article does not indicate it is locked, I cannot find the normal way, or any way, to edit it. This seems strange.

Thanks for your help. — Preceding unsigned comment added by 136.49.4.224 (talk) 14:34, 26 June 2018 (UTC)

Name

The background section of this article needs to explain how this concept arrived with the name "Chronic Lyme disease" in the first place. 198.176.83.34 (talk) 12:21, 13 November 2018 (UTC)

New research

This articles data is a bit out of date. While its correct that the evidence for "chronic Lyme disease" is scant and much work needs to be done, the wording at the beginning of the articles is hyperbolic and inaccurate. There is a wide body of evidence and research produced by respected medical institutions that suggest this very well could be a real illness that should be more thoroughly researched.

A Johns Hopkins medical research study found widespread brain inflation in post-treatment Lyme disease patients: https://jneuroinflammation.biomedcentral.com/articles/10.1186/s12974-018-1381-4

PTLD is becoming more of a recognized ailment but with no definitive test or treatment:

I would suggest this article should be updated with more neutral wording, links to a few of these studies and suggest that the idea that this is settled science be removed. At the same time, it's important to highlight that there is no test or treatment for PTLD approved by the FDA and any suggestion that there is, is most certainly pseudoscience. — Preceding unsigned comment added by Charlimopps (talk • contribs) 19:13, 24 July 2019 (UTC)

Whenever someone writes "a Harvard study" or "a Johns Hopkins study," I become immediately skeptical. Scientists rarely care where a study is done. Period. Johns Hopkins used to employ one of the most notorious, and ignorant, anti-vaccine zealot in the USA. So there's that. Two of the articles you cite fail WP:MEDRES because they are from low-impact factor, predatory journals. That being said, that "Johns Hopkins" study clearly does not support the existence of CLD. This Wikipedia article is about CLD, which does not exist. It is a scam. And this article provides a large number of citations that support that. That is what is meant by WP:NPOV. SkepticalRaptor (talk) 19:38, 24 July 2019 (UTC)

Hi Charlimopps,

"Post-treatment Lyme disease" isn't the same as "Chronic Lyme disease". A PTLD diagnosis requires evidence of prior Borrelia infection, according to a standardized test that is available through any medical lab that does normal medical testing. It is the Borrelia version of Post-polio syndrome, or the scars after smallpox: the infection itself is gone, but the damage it did lingers.

A CLD "diagnosis", on the other hand, requires only your personal belief that long-term (and often lifelong) symptoms should be attributed to an infection, even if you have never been bitten by a tick or visited an area where ticks carry Borrelia. I'm sure you can see the appeal ("something that can be fixed with antibiotics" sounds ever so much nicer than "your kid has schizophrenia and may be in and out of psych hospitals for the next decade"), but it's not 'real'. That is, the people really are suffering, but the CLD idea isn't itself a single, coherent disease. WhatamIdoing (talk) 04:15, 31 July 2019 (UTC)

Addition of the POV:

I am not a medical professional, and I am not up on the latest "research". I cannot link to unimpeachable sources. But what I do know for a fact is this: my wife and older son had a disease that was successfully treated by so-called Lyme-literate doctors and integrative PA's. Moreover, these Lyme-literate doctors and PA's called it "chronic Lyme disease". For these reasons, I question nearly everything in this article. What I suspect is that insurance companies not wanting to pay for the extremely expensive antibiotic treatment (which worked on my son, mostly, but was not used, interestingly, on my wife) is what's ultimately behind all this. Chronic Lyme treated in this way is more expensive to treat than cancer. Even without antibiotics and using treatments like various supplements it's extremely expensive. So, and I'm speculating here, insurance companies don't want to pay for chronic Lyme. So they pressure insurance-based doctors to pretend it doesn't exist. So the insurance-based doctors come out with criteria that pretend away the chronic Lyme disease.

For what it's worth, Samaritan Ministries, a Christian medical-cost-sharing program, recognizes chronic Lyme disease. It's not a terribly common disease, so statistics might not be readily available.

Ackbeet (talk) 16:15, 5 April 2019 (UTC)

Please see WP:V, a core policy. We reflect accepted knowledge as published in reliable sources. Alexbrn (talk) 16:36, 5 April 2019 (UTC)

Very well. See:

"The Controversies, Challenges and Complexities of Lyme Disease: A Narrative Review", by Marie Claire Van Hout, J Pharm Pharm Sci (www.cspsCanada.org) 21, 429 - 436, 2018.

"Precision Medicine: The Role of the MSIDS Model in Defining, Diagnosing, and Treating Chronic Lyme Disease/Post Treatment Lyme Disease Syndrome and Other Chronic Illness: Part 2", by Richard I. Horowitz and Phyllis R. Freeman, Healthcare 2018, 6(4), 129.

"Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis", by Lorraine Johnson, Mira Shapiro, and Jennifer Mankoff, Healthcare 2018, 6(4), 124.

"Late Lyme neuroborreliosis with chronic encephalomyelitis", by Isabelle Beuchat, Vincent Dunet, Pascal Meylan, and Renaud Du Pasquier, Neurology Sep 2018, 91 (13) 627-628.

The last three of these simply assume the factual existence of chronic Lyme disease, and hence contradict a good portion of this Wiki article. In addition, there are a number of citations in the article that are suspect. Why are we allowing quoting Forbes in a medical article? Therefore, I am requesting that the POV be re-inserted. Ackbeet (talk) 18:50, 5 April 2019 (UTC)

Sources for WP:Biomedical information should meet WP:MEDRS, e.g. be secondary, reputably-published and not out-of-date. None of your proposed sources are suitable. To get a flavour of current thinking in respectable literature, maybe look at this recent editorial: PMID 30685081 ~~(I am not proposing it is used as a source for our article)~~. Note there is such a thing as ongoing B. burgdorferi infection, and there is some terminological confusion out there, but this article is specifically about the fake disease with non-specific symptoms most commonly called "chronic lyme disease", and the quackery swirling around it. For the quackery aspect sourcing guidelines differ, and in particular WP:PARITY comes into play. Alexbrn (talk) 19:03, 5 April 2019 (UTC)

Can you please show me several things: 1. How does the J Pharm Pharm Sci article, by Van Hout, that I quoted, fail to be secondary, reputably-published, and not out-of-date? 2. The main article says, "...of which possibly the most controversial and harmful is long-term antibiotic therapy, particularly intravenous antibiotics.", and quotes Salzberg, Steven (2016-04-04). "Long-Term Antibiotic Use for Lyme Disease Doesn't Work, Study Finds" Forbes. A review it might be, but published in a medical journal it certainly was not. And while I can see how it could be quoted for supporting the "controversial" bit, how can it be allowed for supporting a medical claim (the "harmful" bit)? And if it's not out-of-date, how is the newer J Pharm Pharm Sci article out-of-date? 3. As for this article being about the quackery surrounding "chronic Lyme disease", your statement there commits the fallacy of begging the question. This is what I'm calling into question! Quackery there may be about chronic Lyme, but the articles to which I've linked show that not everything is quackery, any more than everything connected with chiropractic is quackery (though no doubt there is some). The PMID 30685081 article to which you linked is quite simply not a scholarly article. It has zero footnotes! It has no references! I refuse to allow that article to sway me in any way. Ackbeet (talk) 19:23, 5 April 2019 (UTC)

I beg your pardon, PMID 30458921 is usable, but adds little to what we know since it says CLD is controversial and has no clinical definition - which is in accord with the "scam" view that prevails in reputable sources. Please review how WP:PARITY modifies the sourcing guidelines for WP:FRINGE topics such as this. Alexbrn (talk) 19:59, 5 April 2019 (UTC)

It's not a scholarly article. Scholarly articles have footnotes, citations, references, and bibliographies. That article has none of them. Therefore, it reflects the opinions only of the authors and perhaps any reviewers. Articles like that one shouldn't be quoted by anybody, WP or not. Also, you have not interacted with my previous questions. — Preceding unsigned comment added by Ackbeet (talk • contribs) 20:04, 5 April 2019 (UTC)

It's usable okay. Salzberg is usable per WP:PARITY, as is QuackWatch. I've added PMID 25999227 as a "belt and braces" supporting ref - this is a useful source which ideally could be used for an overall refresh of the article. Alexbrn (talk) 20:22, 5 April 2019 (UTC)

If you want to show that CLD is a controversial subject, fine. But you can't use it to support medical statements such as that long-term antibiotic therapy is harmful. That is a medical statement and should have medical sources to cite it. Otherwise, the main article commits the fallacy of appeal to inappropriate authority. You still have not interacted with my question about why the Van Hout article is not acceptable. In addition, let me ask this question: is this article considered to be "fringe" merely because it has that ridiculous sidebar labeled "Pseudomedical Diagnosis"? What counts as officially "fringe" in the WP world? In summary: there are many secondary, reputably-published, up-to-date sources that differ from this article, and hence I would like the POV added back in, since the article comes across as severely slanted. Your PMID 25999227 is light-years better than the other one you mentioned, but I think even it would be contested (I don't have the time to do that.) — Preceding unsigned comment added by Ackbeet (talk • contribs) 20:33, 5 April 2019 (UTC)

I answered about PMID 30458921 above. The harm statement is now sourced to the Lantos review. We know this is a fringe topic because our best RS for fringe topics (e.g. QuackWatch and Science-Based Medicine) call it so, and there is no counterweight in RS. Alexbrn (talk) 20:47, 5 April 2019 (UTC)

Can't say I'm impressed with either QuackWatch or SBM. Can you please tell me what the abbreviation "RS" means? You have not answered my question about the Van Hout article. What I asked was why the Van Hout article was not acceptable. You merely claimed it was, before I asked this question. Let me ask this question: what is on this article's page that indicates it is fringe? I'm talking about some marker. Moreover, how would I go about challenging that classification? Ackbeet (talk) 00:05, 6 April 2019 (UTC)

RS means WP:RS. The "Van Hout article" is PMID 30458921 which I addressed above. To discuss whether a topic is fringe, post at WP:FT/N. Alexbrn (talk) 06:00, 6 April 2019 (UTC)

Improving this article

Just started some initial efforts to improve the pages chronic Lyme disease and (riddled-with-fringe-citations) Multiple chemical sensitivity. My edits were reverted, but there seems to be some sort of misunderstanding, because all edits were above board. Please review the changes again. The effort was to remove redundant or irrelevant info and citations to WP:FRINGE group ILADS. For example, combined three mentions of fibromyalgia into one mention and removed the FM-wars reference, which just cites Feder. Also added citations to Feder, Barbour, and secondary sources citing CDC research that many people diagnosed with "chronic Lyme" have well-defined illnesses (e.g. ALS, cancer, Lupus), not CFS/fibromylagia.

I'd also like to add more about the psychiatric comorbidity often seen in patients with "chronic Lyme" beliefs, as discussed by Lantos, but not sure of the best way to add it.

Also valuable would be more discussion of the common beliefs in chronic Lyme groups, for example the discredited beliefs in multiple chronic coinfections. ScienceFlyer (talk) 11:42, 14 December 2019 (UTC)

The misunderstanding is your own. Your edits were not "above board" as you have stated above. -Roxy, the PROD. . wooF 11:45, 14 December 2019 (UTC)

Disputed edits

User:Sthatdc has been making edits to this article that have been disputed by User:JzG and User:Alexbrn. For some reason none of those editors has seen fit to create a section here, where it belongs, to discuss this issue, although they all seem perfectly capable of editing Wikipedia:Administrators' noticeboard/Incidents, so I am creating it for you. Please discuss the issue here rather than edit warring. There is no loss of face involved in being the one to start a discussion here: quite the reverse. Phil Bridger (talk) 18:51, 3 December 2019 (UTC)

Perhaps Sthatdc could say what they're trying to do. I'm seeing weakening of WP:V and removal of information from the lede here[1]. What is the rationale for this edit? Alexbrn (talk) 19:03, 3 December 2019 (UTC)

Since he refuses to say what his problem is, other than to claim it is somehow "obvious", I think we can safely ignore this until he explains his issue. Guy (help!) 23:03, 3 December 2019 (UTC)
Well, I'll start, since nobody else wants to go first. User:Sthatdc, you removed the word harmful, as in of the treatments provided by people outside the scientific mainstream, "the most controversial and harmful is long-term antibiotic therapy, particularly intravenous antibiotics". Why did you remove this? For example, do you think that there are even more harmful therapies in reasonably common use, or that it is a harmless treatment? WhatamIdoing (talk) 03:07, 7 December 2019 (UTC)
The word "harmful" seems to be well supported by the sources, but I'm not sure about the word "most". Both of the sources cited for this sentence only appear to look at antibiotic use, and not other proposed treatments, so they do not support any comparison. Phil Bridger (talk) 11:25, 7 December 2019 (UTC)

Taking another look I'm not sure about the word "controversial" either. Is there actually any controversy about this or are all reliable sources in agreement that this treatment doesn't work, and is actually harmful? Phil Bridger (talk) 12:22, 7 December 2019 (UTC)
Phil Bridger, I'd say those were good points. This source from Science-Based Medicine addresses this topic, citing this relevant paper from AMMI Canada. Alexbrn (talk) 14:08, 7 December 2019 (UTC)
Something can be "controversial" even when the scientific facts are clear. There's a general meaning of the term that is more like "people are yelling past each other". See https://www.merriam-webster.com/dictionary/controversy : dispute, quarrel, strife. You can be wrong and still engage in all of that. WhatamIdoing (talk) 05:54, 8 December 2019 (UTC)
You are right about that - I tend to be over-pedantic with word meanings. I would still stand by my questioning of "most", however. The sources make it clear that this is the treatment most commonly prescribed by those who believe that these symptoms are related to lyme disease, but don't preclude there being an even more controversial and harmful treatment offered. Phil Bridger (talk) 13:14, 8 December 2019 (UTC)
Phil Bridger, it's the primary reason behind the passage of laws specifically shielding "Lyme literate" doctors from discipline for using dangerous quack treatments. As so often with quacks, they get patients to lobby for laws that prevent regulatory bodies from addressing their malpractice. It's called "legislative alchemy" - the process whereby you can turn lead into gold by passing a law saying that lead is a form of gold. Guy (help!) 17:10, 9 December 2019 (UTC)
"possibly the most controversial and harmful" is unverifiable speculation. "one of the most controversial" is a statement that can be verified. Intravenous antibiotics are mentioned in the lead but not in the article anyway, which does not make sense. Who administers intravenous antibiotics except medical professionals? I do not believe medical professionals administer treatments which they know to be harmful. If I interpreted that sentence wrongly, make it clearer. Sthatdc (talk) 00:17, 15 December 2019 (UTC)
Sthatdc, it's the one that has led to attempts to discipline "Lyme literate" doctors, and for which legislative alchemy has been invoked. Guy (help!) 00:49, 15 December 2019 (UTC)
And why say chronic lyme has "symptoms similar to those of Lyme disease" when the cited source (and many others) make the point that chronic lyme has a huge number of symptoms, many of which are not specific to real lyme disease? Alexbrn (talk) 10:49, 7 December 2019 (UTC)

WP:COPYPASTE

You may not copy and paste text from a source, and present it in the voice of the encyclopaedia. You may not do this even if you indicate where you copied and pasted it from. Wikipedia is a free encyclopaedia, which means you must write your own text, which you license freely. You may quote a source verbatim if the exact words need to be reproduced. So, a first sentence which includes a large chunk of copied and pasted text presented in the voice of the encyclopaedia is not valid. I fixed that. Sthatdc (talk) 00:12, 15 December 2019 (UTC)

So you say. Now please provide the source, and show that it's not a reverse-copyvio (a site that copied from us). Guy (help!) 00:26, 15 December 2019 (UTC)

You seem to have completely misunderstood the situation. You think a review article in the New England Journal of Medicine plagiarised Wikipedia, and therefore it's OK for Wikipedia to plagiarise them? Sthatdc (talk) 00:36, 15 December 2019 (UTC)

Sthatdc, See above. Please identify the source of the supposed copyright violation. You removed text cited to multiple sources. Copyright is not a magic talisman, you have to show the actual source and that it is not de minimis. Guy (help!) 00:52, 15 December 2019 (UTC)

You seem to have changed tack, but again, you have completely misunderstood. The text was clearly copied and pasted from a source and presented in the voice of the encyclopaedia. Are you denying that? Sthatdc (talk) 00:54, 15 December 2019 (UTC)

Sthatdc, thank you for giving me the benefit of your 150 edits' worth of experience, but I, as a mere 15 year veteran with under an eighth of a million edits am unable to discern the purported copyright violation. So when you get back from your edit warring block you need to identify what text was copied from what sources, and that it's not free content (as Wikipedia sourced text is). Guy (help!) 01:13, 15 December 2019 (UTC)

You can't see which text was copied and pasted from a source and presented in the voice of the encyclopaedia? You are either illiterate, or trolling. Sthatdc (talk) 14:03, 21 December 2019 (UTC)

Evidence, please. --Guy Macon (talk) 01:52, 22 December 2019 (UTC)

I too am interested in these claimed copyright violation problems. Wikipedia takes copyright very seriously. So, specifics please so a good fix can be done! As to Sthatdc's other edits, they degrade the information content of the lede while skewing the POV (as mentioned above, e.g. by removing "harmful") and so are not to the overall benefit of the article. Hence, reverted. Alexbrn (talk) 14:20, 21 December 2019 (UTC)

Yes, me too. Sthatdc, you must provide evidence in EXACTLY this form: Provide the full quote, in quotation marks, from THIS article. Then provide the source from which it is supposedly taken, and tell us the page. If you do that, then we can take you seriously. Your evasive replies make me think you're just trolling us. -- BullRangifer (talk) 02:04, 22 December 2019 (UTC)

Unless something went very, very wrong, a Southern Hemisphere equivalent of an Ivy League/Oxbridge university does not give a first class honours degree in English literature and a law degree to someone who is illiterate. I'd be interested to see proof of this copyright violation. (Note: admittedly, in those same decades, something did go very, very wrong there, but that's another story.)--Shirt58 (talk) 03:34, 22 December 2019 (UTC)

Read the first sentence!!! It is already IN quotation marks!! Apparently, you do not understand what is written at WP:COPYPASTE. It is not a quotation; if it were, the exact words would be crucial to reproduce, and the person saying them would need to be named inline. What would motivate you to pretend you cannot see the copied text? Sthatdc (talk) 14:27, 22 December 2019 (UTC)

Newly Proposed Definition for Chronic Lyme

Hi all. Wondering if anyone would consider adding a section based on the relatively recently published evidence-based definition for chronic Lyme published by ILADS. https://www.mdpi.com/2079-6382/8/4/269/htm Seems like some of sources here are from early 2000s, particularly on the media side, and worth adding some fresh info. Also, I think it would be worth adding this also pretty recent article from the Atlantic with a compelling and open-minded patient perspective https://www.theatlantic.com/magazine/archive/2019/09/life-with-lyme/594736/ I'm pretty new here, so not too confident about the editing process, but throwing my hat in the ring. Mr Quizzicalclaws (talk) 00:21, 29 September 2020 (UTC)Mr Quizzicalclaws

ILADS is most assuredly not a reliable source for information. Pretty much exactly the opposite, in fact, as essentially nothing they have ever issued has been supported by research from within the mainstream medical community; see International Lyme and Associated Diseases Society for a summary. Minority and fringe viewpoints are not given equal weight in Wikipedia, and if sources like this are cited at all, readers are given appropriate caveats regarding the strong and unsupported biases of such sources. Dyanega (talk) 16:28, 29 September 2020 (UTC)

Ditto for The Atlantic; see WP:MEDRS. Unless citing, for example, Society and culture (see WP:MEDMOS), the laypress is discouraged as a source for medical content. SandyGeorgia (Talk) 16:46, 29 September 2020 (UTC)

Edit warring

TheUndiscoveredWriter you need to stop edit-warring your bad change. Please discuss any change you want to make. Alexbrn (talk) 14:25, 22 April 2021 (UTC)

Possible source

Sadly I lack knowledge to distinguish professionally looking quack page from proper medical page but https://www.frontiersin.org/articles/10.3389/fneur.2021.628045/full looks quite good - from abstract "B. burgdorferi was identified by PCR in several CNS tissues and by immunofluorescent staining in the spinal cord. These studies offer proof of the principle that persistent infection with the Lyme disease spirochete may have lingering consequences on the CNS." Mateusz Konieczny (talk) 11:39, 17 August 2021 (UTC)

There are a number of reasons that this article should not be relied upon (see also WP:MEDRS). Case reports are low on the hierarchy of evidence. This is a case report funded and published by chronic Lyme advocates in Frontiers (a dubious publisher). The report claims that the woman had a history of Lyme disease and then had a dementia diagnosis. It claims that she had positive antibody testing for Lyme disease, was treated for Lyme disease, and later "Serum C6 ELISA was negative". A negative C6 ELISA means that the antibody testing is negative. The symptoms/history reported by the woman are inconsistent with neurologic Lyme disease. Given her negative antibody testing and symptoms inconsistent with Lyme disease, it would be inappropriate to conclude that the woman had "chronic Lyme" or her dementia was caused by "chronic Lyme". The authors' other testing should be called into question because of lack of corroborating evidence. ScienceFlyer (talk) 17:13, 17 August 2021 (UTC)

Lines of separation

I'm trying to understand what separates "Chronic Lyme Disease" from "post-treatment Lyme disease syndrome". The Lyme disease article mentions "People who have nonspecific, subjective symptoms such as fatigue, joint and muscle aches, or cognitive difficulties for more than six months after recommended treatment for Lyme disease are said to have post-treatment Lyme disease syndrome (PTLDS)."

That seems to overlap with the description of Chronic Lyme Disease "a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to Borrelia burgdorferi infection" to describe their condition and their beliefs about its cause."

Are there some tests for "evidence of any relationship to Borrelia burgdorferi infection" in the case of "post-treatment Lyme disease syndrome"? If so that should be mentioned somewhere in the article. — Preceding unsigned comment added by 173.71.97.185 (talk) 21:45, 8 September 2021 (UTC)

Gleiberman

While the movie deserves criticism, this column is only from an entertainment reviews site and thus the rant of an unqualified person (WP:RSP also cautions about using Entertainment Weekly for other purposes than entertainment film reviews and this is a propaganda pseudodocumentary). When I read it, my impression is that Gleiberman suggests an undue relationship between environmentalism and CLD (a type of conspiracy theory, versus the fact that actual LD, not CLD, is expected to become more prevalent due to climate change). This article is also not necessarily about that movie, so such non-expert commentary may best belong attributed at that movie's article. —Paleo Neonate – 08:05, 27 September 2021 (UTC)

Improvements to article

This article does a good job of explaining the social phenomenon of chronic Lyme (CLD) beliefs. However, there are some statements that are unnecessary and/or unproven. I propose to remove the phrases "Fibromyalgia can be triggered by an infection," (and remove other related phrases like "post-infectious" from "post-infectious fibromyalgia") since this is unproven, unnecessary, and I couldn't find support for it in the provided reference. There are also a number of redundant phrases, and it might be a good idea to tighten things up.

Also, while many people who receive CLD diagnoses have unexplained symptoms (including chronic fatigue and fibromyalgia), others have well-defined diagnoses. These are the first two categories listed in Figure 1 of the 2007 NEJM consensus review by Feder and colleagues. In addition to unexplained symptoms, the CDC ( report 1, report 2) reported cases of cancer, a brain tumor, ALS, and autoimmune neutropenia, each being falsely diagnosed as CLD. There are also reports of Lupus, MS, and mental disorders being misdiagnosed as CLD.

Other aspects of CLD beliefs should also be added, such as the belief in "herxing", as discussed by Steven Novella. ScienceFlyer (talk) 04:34, 27 September 2021 (UTC)

These all seem like they'd be good edits to me, I'd encourage you to be bold and make those improvements. ‑‑Volteer1 (talk) 06:17, 27 September 2021 (UTC)

I think herxing is indeed relevant, it's similar when health problems result from practices like "detox" or certain forms of meditation and dieting (i.e. in yoga), with the common encouragment that it is a sign of progress on the path... The article also mentions how when one does better, there is a tendency (like with altmed) to believe that whatever was attempted as a treatment produced results (when many conditions are simply transient and unrelated). —Paleo Neonate – 02:15, 29 September 2021 (UTC)

CFS/fibro reference

speaking as someone with personal experience with these things: I'm not sure referencing these two as the real, correct cause, when they are also defined by 'generic nonspecific symptoms' (aka what your doctor tells you that you have when they don't know what you have), is necessarily the best information to be giving. maybe omit the sentence about what chronic Lyme is 'likely due to'? 2601:180:8300:B9D0:0:0:0:B52 (talk) 03:57, 21 December 2021 (UTC)

The content meets WP:V ("Chronic Lyme disease, which for all intents and purposes is FM/chronic fatigue ..."). Are there better sources that dispute this knowledge? Alexbrn (talk) 06:10, 21 December 2021 (UTC)

Claim of no evidence of persistent infection

This article cites reference #3 to say "Despite numerous studies, there is no evidence that symptoms associated with CLD are caused by any persistent infection." ... however, this is a July 2010 reference and there have been studies since then to support the notion of persistent infection in some. For example,

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease [2] (2018) "Motile spirochetes identified histopathologically as Borrelia were detected in culture specimens, and these spirochetes were genetically identified as Borrelia burgdorferi by three distinct polymerase chain reaction (PCR)-based approaches"

Variable manifestations, diverse seroreactivity and post-treatment persistence in non-human primates exposed to Borrelia burgdorferi by tick feeding [3] (2017)

"In addition, we observed evidence of persistent, intact, metabolically-active B. burgdorferi after antibiotic treatment of disseminated infection"

I don't usually edit WikiPedia but thought this should be brought to attention. — Preceding unsigned comment added by Aniese82 (talk • contribs) 03:03, 7 June 2022 (UTC)

Junk Middelveen sources, as discussed here ad nauseam over the years. Alexbrn (talk) 03:10, 7 June 2022 (UTC)

Those are actual, proper studies. What exactly makes them "junk sources" and what makes you more konwledgeable than all the scientists involved in those studies? — Preceding unsigned comment added by 80.108.55.24 (talk) 14:13, 16 July 2022 (UTC)

Review WP:RS, WP:MEDRS and read the article (focusing on occurrences of the word group). SandyGeorgia (Talk) 14:19, 16 July 2022 (UTC)

Semi-protected edit request on 29 August 2022

‹ The template below (Edit semi-protected) is being considered for merging. See templates for discussion to help reach a consensus. ›

This edit request to Chronic Lyme disease has been answered. Set the |answered= or |ans= parameter to no to reactivate your request.

Requesting to change the end of the sentence in the first paragraph "...or with post-treatment Lyme disease syndrome, a set of lingering symptoms which may persist after successful treatment of infection with Lyme bacteria."

to reflect the most current CDC definition of Post Treatment Lyme Disease Syndrome.

"...or with post-treatment Lyme disease syndrome, a set of lingering symptoms the CDC defines as "pain, fatigue, or difficulty thinking that lasts for more than 6 months" after treatment of infection with Lyme bacteria. The cause of PTLDS is "not known" according to the CDC. ^[1] DubiousPuffery (talk) 20:45, 29 August 2022 (UTC)

References

^ National Center for Emerging and Zoonotic Infectious Diseases (NCEZID), Division of Vector-Borne Diseases (DVBD), Centers for Disease Control and Prevention (2007-05-14). "Post-Treatment Lyme Disease Syndrome". Centers for Disease Control and Prevention. Retrieved 2022-08-29.

Not done: that is too much detail for the lead of an unrelated article. PTLDS is already discussed at Lyme disease, a hatnote to which exists on this article. Madeline (part of me) 18:32, 30 August 2022 (UTC)

Media Section Sources

Hola User:ScienceFlyer. Let's hash this out. What's the problem with my addition? I cited the same reviewer for Under Our Skin. If his authority is sufficient for one movie, then why is it not for another? I'm all for qualified medical professionals giving medical advice but this is a review in the media section. Perhaps we can focus on the review's non-medical aspect? (WikiTryHardDieHard (talk) 16:10, 5 June 2023 (UTC))

Both of the films in the Media section have their own articles. The content is UNDUE here, and it's doubtful that all of that content even belongs in the film articles. SandyGeorgia (Talk) 16:39, 5 June 2023 (UTC)

Do you want to get rid of the media section? WikiTryHardDieHard (talk) 17:17, 5 June 2023 (UTC)

What is the reasoning ? SandyGeorgia (Talk) 22:23, 5 June 2023 (UTC)

NEJM Source

@User:ScienceFlyer, @User:SandyGeorgia I want to draw your attention to the citation below. It is being used to describe Chronic Lyme Disease as a fraud. However the article does not bear out such an accusation.

Feder, HM; Johnson, BJB; O'Connell, S; et al. (October 2007). "A Critical Appraisal of "Chronic Lyme Disease"". NEJM. 357 (14): 1422–30. doi:10.1056/NEJMra072023. PMID 17914043.

— Preceding unsigned comment added by WikiTryHardDieHard (talk • contribs) 20:58, June 5, 2023 (UTC)

You seem to be reading an entirely different article. The one you linked concludes "Chronic Lyme disease is the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections. Other examples that have now lost credibility are “chronic candida syndrome” and “chronic Epstein–Barr virus infection.” The assumption that chronic, subjective symptoms are caused by persistent infection with B. burgdorferi is not supported by carefully conducted laboratory studies or by controlled treatment trials. Chronic Lyme disease, which is equated with chronic B. burgdorferi infection, is a misnomer, and the use of prolonged, dangerous, and expensive antibiotic treatments for it is not warranted." Other quotes include "Although proponents of the chronic Lyme disease diagnosis believe that patients are persistently infected with B. burgdorferi, they do not require objective clinical or laboratory evidence of infection as a diagnostic criterion.", "Other investigators have been unable to reproduce these findings in patients with well-documented post–Lyme disease syndrome.", and "Such laboratories may perform unvalidated in-house tests that are not regulated by the Food and Drug Administration, or they may perform standard serologic tests interpreted with the use of criteria that are not evidence-based." That is as close to calling it a fraud as you are ever going to see in an academic paper. Or are you looking for the actual word "fraud" to appear in the text? Regardless, this paper thoroughly condemns the diagnosis, and its practitioners, as something that is demonstrably not science. What other word would you suggest to describe something that purports to be medicine but does not adhere to any of the basic requirements? Dyanega (talk) 21:54, 5 June 2023 (UTC)

WikiTryHardDieHard please remember to sign your talk page posts by adding four tildes ( ~~~~ ) after them. Also, please take care to accurately represent what is in the article. The places where I see the word fraud in the article are either double-cited, or not cited to the NEJM at all.

Both the label and the belief that these people's symptoms are caused by this particular infection are generally rejected by medical professionals, and the promotion of chronic Lyme disease is an example of health fraud.[2][3
In contrast to these recognized medical conditions, the promotion of chronic lyme disease is a quintessential example of health fraud.[3]

I don't believe the second statement should be stated as fact in Wikivoice, considering the sourcing there. SandyGeorgia (Talk) 22:28, 5 June 2023 (UTC)

@SandyGeorgia Sure, thanks for the reminder about the tildes. I was specifically talking about the first example. The other reference: "Treating ‘chronic Lyme disease:’ Is it medical fraud?" Does not seem to be much better than the NEJM article. The author first asks if it's fraud, posits that yes, it is fraud, then in conclusion says "Is this not deception and misrepresentation for profit? Is this not medical fraud which endangers the patient and the community?" How can we possibly hold up these two articles as our sole citations for the apparently unanimous conclusion that Chronic Lyme Disease is fraud? WikiTryHardDieHard (talk) 22:42, 5 June 2023 (UTC)

Good question. Yeah at the very least I would like to change it from "fraud" as that denotes a crime. If we can find evidence of a doctor convicted of fraud for this offense, then I would consider leaving it. Maybe we can pull words used in the article. Eg. unexplained, not supported, unvalidated.WikiTryHardDieHard (talk) 22:29, 5 June 2023 (UTC)

@WikiTryHardDieHard The definition of health fraud is not necessarily the same as other types of fraud. The FDA defines health fraud as "the deceptive promotion, advertising, distribution, or sale of a product represented as being effective to prevent, diagnose, treat, cure or lessen an illness or condition, or provide another beneficial effect on health, but that has not been scientifically proven safe and effective for such purposes."

If you are looking for specific examples of health fraud, see the Lancet Infectious Diseases review and the case of Carol Ryser and her victims.

There's also this discussion of dozens of "unorthodox" treatments sold for CLD. As a general reference on pseudoscientific medicine like CLD, I recommend the book Do you believe in magic?. ScienceFlyer (talk) 22:57, 5 June 2023 (UTC)

Dramatic re-write

All, it is time for this article to be dramatically modified. The sources used to define the overall tone and tenor of this article are old. Chronic Lyme is no longer considered pseudoscience or fringe science. Modern research definitively establishes chronic lyme infection as real, and chronic lyme clinics have been opened at Columbia University, John's Hopkins, and UCSF. It's time to remove this old and grossly inaccurate information. I cannot yet edit this article myself but would be glad to work closely with those who can and who routinely do edit the article. Vt500ascott (talk) 20:37, 11 September 2023 (UTC)

Hello @Vt500ascott:, I suggest that you make your change request here first. Make sure it is stated in the form of "I'd like to change X by Y" or "I'd like to add X between Y and Z" followed by the list of sources used to back up the change. Before making that request, make sure that you carefully read WP:MEDRS and WP:FRINGE as well as the archives of this discussion page (see links at the top) to make sure that your proposal follow the rules. --McSly (talk) 21:01, 11 September 2023 (UTC)

Thank you. I will do so. Vt500ascott (talk) 21:42, 11 September 2023 (UTC)

"Chronic lyme disease" is not the same as Post-treatment Lyme disease Syndrome. "Chronic lyme disease" remains a vague term used to refer to a variety of ailments, including chronic fatigue syndrome/fibromygalia. The article does not need to be changed. If you attempt to "dramatically rewrite" the article, I will revert you. Hemiauchenia (talk) 21:16, 11 September 2023 (UTC)

I am eventually going to change this article. And I am going to source all my changes with modern literature. And you are not going to revert because you will be in the wrong. PTLD is a vague term that presumes all people who remain symptomatic after treatment do so for reasons other than chronic infection. It is now understood that some people do remain symptomatic because of chronic infection, hence the need to revise this article. Again, the article contains old and outdated information that is no longer accurate. Science marches on even if your ideology does not. Vt500ascott (talk) 21:23, 11 September 2023 (UTC)

Your claim that this article is "outdated" is utter bollocks. Take this quote from a 2021 review article entitled "A Review of Post-treatment Lyme Disease Syndrome and Chronic Lyme Disease for the Practicing Immunologist" [4] Chronic Lyme disease is a poorly defined term that is applied to patients with persistent symptoms including fatigue, cognitive dysfunction, or musculoskeletal pain. Some believe that the symptoms are due to an active, persistent Borrelia infection, often despite apparently adequate antibiotic treatment. The patient may not have any objective clinical or laboratory evidence of either a previous or a current Borrelia burgdorferi infection. The condition is not recognized by the Centers for Disease Control and Prevention (CDC), the Infectious Diseases Society of America (IDSA), or the American Academy of Neurology. Often, alternative practitioners who are designated as “Lyme-literate” make this diagnosis. Chronic Lyme disease has been widely publicized in the public media and by patient advocacy groups. There is no convincing evidence that chronic Lyme disease is due to a persistent B. burgdorferi infection. It's tone is basically mirrors that of the current article. The article does not need to be changed. "Chronic lyme disease" remains a vague term. Hemiauchenia (talk) 21:31, 11 September 2023 (UTC)

Irrelevant. I can cherry pick as well as you can and I can do it better since I know this topic better than you. But I'm not going to do that with you right now. You are on notice that this article will be changing; that all changes will be recent, modern, and sourced; and that the new information will be accurate rather than inaccurate. Vt500ascott (talk) 21:35, 11 September 2023 (UTC)

And who exactly are you, Mr Wikipedia:Randy in Boise with only a handful of edits to your name, to dictate the tone of this article? Are you a recognised expert on this topic? Hemiauchenia (talk) 21:37, 11 September 2023 (UTC)

I am a Professor of Immunology at one of the top medical schools in the world. I have created a wikipedia account today for the express purpose of changing this inaccurate article. Might take me a year to acquire the appropriate editing privilages. I don't care. As long as it takes, it takes. Vt500ascott (talk) 21:41, 11 September 2023 (UTC)

I'd have thought that 'Professor of Immunology' would have little difficulty providing the necessary WP:MEDRS-compliant sources to demonstrate the need for the article to be updated, by consensus. Put up, or shut up. AndyTheGrump (talk) 21:44, 11 September 2023 (UTC)

Of course. I will proceed as my privileges increase with time. I know I cannot change anything today. Vt500ascott (talk) 21:48, 11 September 2023 (UTC)

On the internet, you can proclaim yourself to be anybody and anything. Why should we believe your statement? On the Internet, nobody knows you're a dog Experts have no special status on Wikipedia even if you actually were an expert. The actual sourcing cited, rather than the person doing the editing, is what matters. Hemiauchenia (talk) 21:45, 11 September 2023 (UTC)

Of course. When I have editing privileges, I will proceed. Vt500ascott (talk) 21:46, 11 September 2023 (UTC)

You need no editing privileges beyond those you currently have to provide a list of sources you propose to cite to justify any changes. AndyTheGrump (talk) 21:48, 11 September 2023 (UTC)

Sure. But I just stumbled across this article a few minutes ago. What i must put together will take me some time, and time of course is a commodity. Beyond that however, there appears to be very ingrained resistance here by a dedicated group of ideologues, the credentials of whom are unknown and suspect. There is a controversy in this field, and this controversy has existed for a long time. If If the current editors are determined to maintain the present status quo, it seems unlikely that they will be swayed by any list of modern references Vt500ascott (talk) 21:52, 11 September 2023 (UTC)

No. Vt500ascott, one of the first things you will need to understand in order to be successful here is that assuming good faith is mandatory. You must not accuse others of being "ideologues". For those of us who know the community, it only discredits you. Nor do we demand "credentials" from our editors. I strongly suggest that you refrain from ever making such remarks in the future, regardless of what you may feel to be the case. Generalrelative (talk) 22:09, 11 September 2023 (UTC)

Also from the same source In many cases, patients diagnosed with chronic Lyme disease are ultimately diagnosed with fibromyalgia, chronic fatigue syndrome, or medically unexplained symptoms. Hemiauchenia (talk) 21:34, 11 September 2023 (UTC)

Do not persist. You do not know this topic. Vt500ascott (talk) 21:36, 11 September 2023 (UTC)

If you persist in the absurdly confrontational manner you have shown so far, you are unlikely to achieve anything beyond getting blocked from editing. AndyTheGrump (talk) 21:38, 11 September 2023 (UTC)

I have been polite and respectful. Vt500ascott (talk) 21:41, 11 September 2023 (UTC)

@Vt500ascott: You may very well be an expert in the field of immunology, but you will have to abide by Wikipedia's policies and guidelines in order to accomplish what you set out to do. These can be more difficult to learn than some might suppose! See for example the essay WP:CLUE for a bit of context. For the moment it is important for you to understand that the editors with whom you've interacted here know science well, and are experts at making sure Wikipedia does not misrepresent it. In order to receive a respectful hearing you should respect their expertise as well. If you'd like a more detailed introduction to Wikipedia's culture, I would be more than happy to discuss with you on my user talk page. Cheers, Generalrelative (talk) 21:50, 11 September 2023 (UTC)

Thank you. I would be happy to have that conversation on your talk page. Vt500ascott (talk) 21:53, 11 September 2023 (UTC)

Came across a curiuos case report

I came across this curious case report: Concurrent Infection of the Human Brain with Multiple Borrelia Species - is this a case of Chronic Lyme Disease or simply insufficiently-treated Lyme disease? The report was published by MDPI, I know that this is a predatory publisher, but maybe case reports can be believed more. I just wonder whether this case report would seem true to persons well-versed in Lyme. --CopperKettle (talk) 14:11, 2 December 2023 (UTC)

MDPI is a questionable publisher, and case reports are not WP:MEDRS as they are little more than anecdotes. Bon courage (talk) 14:14, 2 December 2023 (UTC)

I never intended to quote the paper in Wikipedia; I'm just curious how this case would be classified: as chronic Lyme or as something else, if we imagine that the case is true. Cheers, --CopperKettle (talk) 02:57, 3 December 2023 (UTC)

That's WP:NOTFORUM a question for here. Bon courage (talk) 05:57, 3 December 2023 (UTC)

Revert removing my recent edit re: podcast coverage

User:ScienceFlyer, you reverted my edit re: podcast coverage, saying that you “don't see how the cited references support the text". I have to admit I’m perplexed by that claim. While I can understand someone subjectively believing that the information I added is not sufficiently important to warrant inclusion, I don’t understand how the citations I added don’t support the text itself, as the text included paraphrased material and direct quotes from the source, respectively. I’ve replaced the content, with minor changes to the phrasing and addition citations. --User:Khane Rokhl Barazani — Preceding undated comment added 12:26, 12 February 2024 (UTC)

WP:MEDRS needed for this kind of material. Bon courage (talk) 12:29, 12 February 2024 (UTC)

Semi-protected edit request on 29 February 2024

The subject of Long Lyme is controversial and patients and physicians on both sides are demonized and entrenched in their view. Few physicians know that the recommended Eliza, Western blot tests are only 50% specific and is immune response dependent. CDC raised the estimate of cases of lyme from 30,000 to 470,000 cases a year in the USA from data collection improvement. Few physicians know this and would not look for lyme or coinfections such as babesia, bartonella in chronic cases or find it since no tests are reliable.

Lyme Connecticut cases in the 1970s led to Dr Burgdorferii discovery of the spirochete causing children and adults to have arthritis so severe many ended up in wheelchairs and today still do yet See also: "Whole genome sequencing of human Borrelia burgdorferi isolates reveals linked blocks of accessory genome elements located on plasmids and associated with human dissemination" at Harvard by Jacob Lemieux, etal with Pardis Sabeti, world leading geneticist on babesia show why the disease is so variable and hard to treat

Johns Hopkins Dr John Aucott panel of academic and gov't scientists report agrees the costs of having long Lyme is high, research is inadequate

Dr Neil Spector "2017 Focus on Lyme" a prominent breast cancer researcher with Lyme carditis shows the genetics as well as his misdiagnoses experience

2022 Tickborne Taskforce report to the US Congress from multiple stakeholders including government agencies, patients

NIMH Dr Susan Swedo research includes psychiatric illnesses can be post tickborne lyme or coinfections and other infections

"Cure Unknown" by Pamela Weintraub a scientific journalist who covers long Lyme giving historical data as well as her family's struggles to be treated

}} 170.250.215.18 (talk) 19:23, 29 February 2024 (UTC)

Thank you for your suggestions. None of those are reliable sources. ScienceFlyer (talk) 23:09, 29 February 2024 (UTC)

[1] National Center for Emerging and Zoonotic Infectious Diseases (NCEZID), Division of Vector-Borne Diseases (DVBD), Centers for Disease Control and Prevention (2007-05-14). "Post-Treatment Lyme Disease Syndrome". Centers for Disease Control and Prevention. Retrieved 2022-08-29.

[1]