Talk:Chronic Lyme disease

Semi-protected edit request on 9 April 2024

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There is definite evidence that chronic symptoms can be attributed to Lyme spirochetes. See Monica Embers Tulane primate study published in 2012 and Invisible International free CME online that includes many researchers and veterinarians on Lyme. See many research articles in lymedisease.org on research. See "Dr Neil Spector 2017 Focus on Lyme" youtube. Even Allen Steere and Gary Wormser now know that the lyme spirochete causes chronic disease as shown by Jac(fob Lemieux including by Allen Steere and Gary Wormser as coauthors of the recently published in 2023 "Whole genome sequencing of human Borrelia burgdorferi isolates reveals linked blocks of accessory genome elements located on plasmids and associated with human dissemination" that explain why some people have severe disease. Like syphilis which is also a spirochete that reaches the brain, lyme can be severe. Unlike syphilis, it has no accurate test with CDC admitting 21-70% sensitivity in early and mid-Lyme so more than half are misdiagnosed. Patients are not treated when tests are negative and not treated when tests are positive "false positive" claimed. "Cure Unknown" by Pamela Weintraub, a medical journalist whose family came down with Lyme documents the Lyme Wars leave patients with no care and go after doctors who try to help them. Yes, there are quacks but there are also people who commit suicide from pain from long Lyme or a coinfection such as Bartonella. Fallon, et al Columbia 74% higher suicide rate in population study in Denmark. See Bartonella Babe Jake Picker 30 yr old who recently chose ass't suicide legal in Calif, a beautiful soul who tried to educate. It is worse than Tuskegee and Wiki should doccument it and remove outdated info. I hope you look carefully at all this. I did not know it until several people I know in NE Ohio were affected in some way as millions are now. Darry Hall of Hall and Oates called it a "scandal" how patients are treated as lyme loonies and I completely agree. See "Lyme the 1st Epidemic of Climate Change" by MB Pfeiffer, an investigative reporter. See Shania Twain, see Kris Kristofferson. See Senator Tina Smith who cosponsored the Kay Hagan Tick act who saw 23 doctors and spent $240,000 before being diagnosed. Doctors do not know it is prevalent and the WB, Eliza tests do not work early when it is most treatable. Kids end up in wheelchairs. Willie Burgdorferi who discoverd Lyme says it is chroni. Feel free to email me. I feel sad that I did not know this despite 28 yrs in the medical field. Teri Sanor, MD 170.250.215.18 (talk) 01:13, 9 April 2024 (UTC)

 Not done: please provide reliable sources that support the change you want to be made. '''[[User:CanonNi]]''' (talk|contribs) 01:18, 9 April 2024 (UTC)

Semi-protected edit request on 21 April 2024

This article is outdated. Even hardliners like Allen Steere and Gary Wormser who denied patients had long lyme now know that Lyme can cause severe and fluctuating symptoms. They are co-authors of the 2023 Lemieux "Whole genome sequencing of human borrelia isolates reveals linked blocks of accessory genome elements located on plasmids and associated with human dissemination" showing viruses within the spirochetes and genes associated with the probability of invasive infection and severe symptoms.

Gary Wormser testified against physicians who tried to help Lyme patients. Lyme is a clinical diagnoses since it needs treated early to prevent dissemination. Now he knows better from this research. They left patients without any treatment which is like Tuskeegee experiment only many more. CDC now estimates 476,000 cases/yr and funding is only $63/per pt. Lyme is a spirochete like syphilis yet 3x more common. HIV/AIDs funding is 2.9 billion which is $82,000/per pt.

The western blot and eliza test miss half the ases in the early and mid-stages.

CDC and IDSA used to say that most patients get a rash yet less than half get a target rash as even Steere's early research showed.

Even with facial droop and musculoskeletal severe symptoms, the guidelines say no treatment is needed unless there are 5 bands.This is arbitrary based on a surveillance definition that is highly specific and poorly sensitive. Over 50 journal articles document Lyme disease despite negative tests.

Even a positive test of 5 bands was often not treated "false positives" so the patients with long symptoms had no treatment then either. Cases like Dr Neil Spector, a successful breast cancer researcher who was repeatedly misdiagnosed leading to his lyme carditis and a heart transplant. He switched careers and noted Lyme disease was in the Dark Ages for research (see Dr Neil Spector 2017 Focus on Lyme") and says syphilis has already confirmed that spirochetes go into the tissues and brain. Kris Kristofferson's dementia was from Lyme. J. Miklossy's research on oral spirochetes and lyme spirochetes found "Alzheimer's disease-a neurospirochetosis. Analysis of the evidence following Koch's and Hill's criteria" and that biofilms of the spirochetes cause the brain plaques, tau and amyloid years ago.

NIH and NINDS funds research based on what individual researchers want to study. Almost all say "more research is needed" yet there is no follow up to advance the field.

$3 billion dollars donated to Alzheimer's disease every year, yet there is not 1 trial on clinicaltrials.gov and in RePORTER, the only researcher advancing the field that I found was Monica Embers at Tulane. Either prove or disprove that dementia can be from oral treponema spirochetes and Lyme spirochet

Invisible International free CMEs shows that veterinarians are ahead of physicians. They do not have the Lyme Wars. They see dogs and treat them. Tulane's Monica Embers gives free education there and has shown monkey brains contain intact Lyme spirochetes, DNA and RNA. That was in 2012 yet no follow up until she did it and found that monotherapy antibiotics is not enough to eradicate Lyme infections.

Wormser did a study years ago showing Lyme patients do not have long symptoms yet selected only patients who had the target rash and got antibiotics within 4 days. It is easily treated then. That is not the population with severe symptoms.

NIH funded in 1997 Lyme and deafness by the Institute for Deafness yet there are no published results, 2 more studies were funded, no published results. Much of neuroborreliosis has no published results despite giving taxpayer dollars. No results mean the field cannot advance.

Senator Tina Smith who signed the 2019 Tick Act was misdiagnosed by 21 physicians and spent 1/4 million dollars on unnecessary tests before Lyme was diagnosed. It costs the USA $75 billion dollars a year because disabled adults cannot work and disabled children cannot attend school regularly so need a 504 Education plan. I was an RN and MD for 28 years combined and knew nothing of this until 4 people I know had Lyme or a coinfection and it is truly a scandal how they were treated. A 14yo went from straight As to disability, a young boy is deaf in 1 ear, a man had joint surgery on his hand and on RA meds until his lyme coinfections were treated with antibiotics for 6 months and then did not need the other 4 hand joints surgery, is off all RA meds and still his pcp and rheumatologist did not research any of this.)

All who sent out misinformation owe people that suffered so much. Mark Ruffalo, the Hulk says it was "brutal, brought me to my knees" Olivia Goodreau was so disabled her parents had to lift her into a wheelchair (much like the children in Lyme 42 years ago) yet was misdiagnosed by dozens of physicians. At 12 yrs old she started LivLyme when she heard that a boy and his mom were living in a car to afford their Lyme treatment. Her book "But She Looks Fine" is true. If they had the late stage sores that syphilis spirochetes have, it would never have come this far. CDC needs to count all cases which it does not do now, it uses a percentage based on if it expects LYme ie in Lyme NE, 1 in 7 cases are counted and in other states much less are counted since they feel clinicians are overdiagnosing it. See lymedisease.org for details. It is the largest lyme database in the world. Public service announcements could be easily changed to say it is a clinical diagnosis, any mental change should be evaluated for infections, the tiny nymph could be shown since many do not see it or the rash. Suicide is 70% higher if Lyme per Fallon research of 6 million in the Danish population. Dr Swedo of NIMH has been trying for years to get education out about strept,lyme and other infections as cause of severe psych problems especially in OCD patients.

Forward this to anyone who will help prevent these tragedies. Teri Sanor, MD OhioMD (talk) 02:28, 21 April 2024 (UTC)

 Not done: it's not clear what changes you want to be made. Please mention the specific changes in a "change X to Y" format and provide a reliable source if appropriate. '''[[User:CanonNi]]''' (talk|contribs) 02:32, 21 April 2024 (UTC)

Balance of page and WP:UNDUE

The current page takes a strong stance against the label "Chronic Lyme Disease". This is understandable given current medical guidelines. However, there needs to be room to address the points of view of patient advocates and researchers reassessing it's status.

What I believe is incontrovertible:

• "Chronic Lyme" is not recognized by practitioners and researchers.
• There is little evidence to support the use of antibiotics as treatment.
• People claim to have the disease despite never receiving a Lyme disease diagnosis.

Let's discuss what other content is appropriate to be included. _{too_much} curiosity (talk) 18:19, 19 May 2024 (UTC)

There has been some guidance by Dyanega already in edit summaries, but what you're running into issues with here when you talk about "balancing" an article is WP:FALSEBALANCE. Wikipedia policy does not state or imply that every minority view, fringe theory, or extraordinary claim needs to be presented along with commonly accepted mainstream scholarship as if they were of equal validity. If specific research has moved from minority view to mainstream that can be discussed, but there are some underlying fundamentals people often misunderstand when it comes to what is considered WP:DUE in medical topics. KoA (talk) 18:32, 19 May 2024 (UTC)

I understand the guidelines. And, most of the time I err on the side of caution with WP:DUE, preferring to exclude rather than include info. Perhaps "balance" is the wrong word for what I'm trying to describe, since I'm not at all trying to balance the page with bogus claims. Rather, I guess I'm trying make the page more "humble", since the current page has a slightly dismissive tone.

I do think it's important to note a change in attitudes among researchers. Fibromyalgia used to be thought of as an affective disorder, but is now treated as one of unknown biological origin. The Time article I included in my edits quotes researchers reexamining it through a similar lens.

I do not believe my previous edits assigned undue weight to a minority view since they clearly stated the medical consensus. Is there anything in my edits that should be excluded? Why? I think I'd find a more detailed discussion to be helpful. _{too_much} curiosity (talk) 18:54, 19 May 2024 (UTC)

@Toomuchcuriosity Thanks for your comments and suggestions.

I don't think the Time piece is reliable, and it should not be used to support "a change in attitudes among researchers".

The Time article mostly quotes or links to researchers who are funded by CLD advocates. The article does not disclose the conflicts of interest. The article photographer (who seems to be essentially a co-author) is a CLD patient. It seems to me that a major development is the money going to some academic researchers from CLD advocates. These researchers are then promoted in the media, including by university press offices. Sources:

As with other antiscience groups, some Lyme disease activists have created a parallel universe of pseudoscientific practitioners, research, publications, and meetings, arranged public protests and made accusations of corruption and conspiracy, used harassment and occasional death threats, and advocated legislative efforts to subvert evidence-based medicine and peer-reviewed science. Politicians, the media, and the public have been left trying to discern the scientific facts from the pseudoscientific ones, with many regarding both as equally valid as they try to be fair and balanced. When such inappropriate and uncritical weighting occurs, public and government officials unknowingly come to accept or even endorse highly unconventional and sometimes dangerous theories and therapies.
— Auwaerter, et al, 2011

In some cases, even clinicians who’ve harmed patients end up being defended by vocal, organized, and well-funded networks. Groups such as the Global Lyme Alliance and the Bay Area Lyme Foundation are flush with cash; the hedge fund manager Steven Cohen, whose wife, Alexandra, has persistent Lyme symptoms, has given more than $50 million toward related groups since 2015. They also boast celebrity allies such as Justin Bieber and Avril Lavigne, both of whom received Lyme diagnoses and have shared details of their alternative treatment protocols.
— Bloomberg, 2020

Steve Cohen, the hedge-fund billionaire purported to have inspired Billions, has committed more than $60 million to Lyme and tick-borne-disease causes. His wife, Alexandra, is a chronic-Lyme patient. Several universities that pursue research topics friendly to the chronic-Lyme cause — such as Columbia and Tulane — are among the recipients of his largesse.
— New York Magazine, 2019

As of today, the Cohens' web page for "Lyme and tickborne diseases" says "Over $102 million to 60+ projects since 2015."

A new center at Columbia University will open this summer to patients. The Cohen Center for Health & Recovery from Tick-Borne Diseases has been established through a $16M grant from the Steven & Alexandra Cohen Foundation to Columbia. [...] Dr. Fallon is also Director of the Columbia Lyme & Tick-Borne Diseases Research center, which was established in 2008 by the Lyme Disease Association Inc. and Time for Lyme (now GLA).
— CLD advocacy group Lyme Disease Association, 2021

One San Francisco Bay Area family decided to make a search for a cure for chronic Lyme disease their personal mission after all four members of their family tested positive for Lyme and co-infection diseases. Aiming to prevent others from enduring a similarly painful chronic health trauma and to shed light on the complex disease and encourage further investment in research, Emily and Malcolm Fairbairn have made a $2.14 million gift to the MIT School of Engineering to fund a two-year research project examining a physiomimetic analysis of acute and chronic Lyme disease.
— MIT press office, 2020

[Emily Fairbairn's] $2 million gift to Iwasaki’s research toward Long COVID and finding a cure for chronic Lyme disease stems from both a personal and altruistic mission. Her daughter was diagnosed with chronic Lyme disease while a student at Harvard. That diagnosis led Fairbairn to uncover the source of her own years of physical suffering. In fact, they learned that her entire family, including their dog, was grappling with chronic Lyme.
— Yale School of Medicine press office, 2023

ScienceFlyer (talk) 22:29, 19 May 2024 (UTC)

@ScienceFlyer I really appreciate you taking the time to explain the issues with the article. Based on that info, I agree that it should be excluded. _{too_much} curiosity (talk) 13:18, 20 May 2024 (UTC)

"Treatment harms" section

I propose to create a new "Treatment harms" section with new and existing material. I've been accumulating references, which might be useful: There is a newer review article describing treatment harms, as well as an older review of dozens of "unorthodox" treatments". This suggestion is semi-related to the edits proposed by @Toomuchcuriosity which cites an unreliable Time magazine article that promotes dangerous bee venom therapy. (I agree with mentioning treatment delay in the article body.)

• The well-established side effects of antibiotics.

• Bee venom therapy can result in anaphylaxis and death. (ref)

• Ozone treatments have been associated with complications, including death. (Ref 1, ref 2)

• Use of disulfiram has caused toxicities and a death (ref 1 authored by French CLD advocates, ref 2, ref 3)

• Harms to children (ref 1, ref 2, ref 3, )
• Older treatments like malaria and bismacine

I'm not sure how this would best be presented stylistically but maybe it's a good idea to just start it and see how it evolves. ScienceFlyer (talk) 21:09, 19 May 2024 (UTC)

This sounds interesting. Go for it. -- Valjean (talk) (PING me) 22:41, 19 May 2024 (UTC)

I read the bee venom therapy as a marker of desperation for finding working treatments, and I feel silly not thinking about how it can be misconstrued by others... I just feel the need to explain that my goal is not to promote bogus, and hope that my edits are assumed to be made in WP:Good Faith. _{too_much} curiosity (talk) 13:19, 20 May 2024 (UTC)