Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

"Experts warn that celebrity tell-alls and rampant “pseudoscience” surrounding Lyme is fuelling misdiagnoses. “Lyme disease has been plagued with misinformation for decades,” said Andrea Love, the executive director of the American Lyme Disease Foundation. “Unfortunately, there are instances of celebrities bringing attention to Lyme when it is unlikely they actually were infected with this bacteria.”"

What's been fueling misdiagnoses - both false negatives and false positives - is a combination of dreadful diagnostics and contested symptoms that has been around for 40 years. A steady stream of propaganda hasn't helped. It's also been a situation characterized not so much by pseudoscience as bad science all around, and has been pretty much from the get-go.

Just a strange article. It has the feel of something written almost a quarter century ago. If this found its way into a US-based journal today, I suspect the push-back would be immediate and substantive. There should be little tolerance for unregenerately one-sided positions anymore (irrespective of if it's the ALDF or ILADS or whomever). There's just too much we still don't know.
 
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Deanne NZ said:
What is the purpose of this article? So many mixed messages.
It is a contentious issue in Australia as authorities say it is not transmitted by ticks there but there are advocacy groups that say it is.
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Mine was not from a tick bite, but from some unknown insect when I was on holiday in the Canaries. I'd had a nasty bite on my ankle which cleared up enough on the way home to not seek help...big mistake. Further down the line I was diagnosed with Borelliosis but which strain remains unknown. True Lyme disease is Borellia Burgdorferi, the American strain. There are at least 6 of over 300 strains of borellia that can cause Lyme-like disease, many being of European origin, inc the Canaries. This is why so many people have a negative Elisa test as this is specific to B Burgdorferi I believe.
 
I didn't think this deserved a thread of its own, but might be of interest to people with Lyme Disease :

https://www.youtube.com/shorts/8Wf58IwUwok?feature=share

Mod note: the video is brief but cognitively demanding with very fast speech, flashing words and images unrelated to the words. The story is that a woman's Lyme disease was cured when she was stung by bees.
 
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Linking this thread about a young girl with ME/CFS-like symptoms given a Lyme diagnosis in the UK

Jonathan Edwards

Thread 'Guardian piece on"Lyme"'

www.theguardian.com

As my daughter got sicker and sicker, our quest for answers dragged on. How did we all miss the bacteria taking over her body?

I write about nature, but when Milly got sick with a mystery illness, it never occurred to me that a long-forgotten tick bite could be the cause
www.theguardian.com www.theguardian.com

Another ill-informed Guardian piece.

Milly seems to have ended up with a Lyme diagnosis having been failed by an NHS that diagnosed "ME/CFS".
And presumably BACME style treatment.
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There is a radio programme on Lyme Disease on BBC World Service today.

www.bbc.co.uk

The Inquiry - Why are more people getting Lyme disease? - BBC Sounds

Lyme disease is becoming more common. But what’s driving that?
www.bbc.co.uk www.bbc.co.uk

Released On: 02 Oct 2025
Available for over a year

Lyme disease is a bacterial infection passed on to humans by infected ticks. Symptoms can range from fatigue, joint pain and a circular shaped rash to facial paralysis and heart arrythmia.

According to a British Medical Journal (BMJ) global health review, Lyme disease has likely infected about one in 10 people across the globe.

Recently, pop star Justin Timberlake went public about contracting the condition.

If treated quickly, most people will recover but there are still issues around diagnosing and treating Lyme disease.

And globally, cases are on the rise. In this edition of The Inquiry, Charmaine Cozier explores what's behind the increase and hears about new tests and vaccines currently being developed.

Contributors:
Dr Sally Mavin, clinical scientist and Director of the Scottish Lyme Disease and Tick-Borne Infections Reference Laboratory, Raigmore Hospital, Inverness, Scotland
Dr Armin Alaedini, Chief Scientific Officer, Global Lyme Alliance
Dr Gábor Földvári, research group leader, Centre for Ecological Research, Institute of Evolution, Budapest, Hungary
Dr Alessandra Luchini, Professor, School of Systems Biology, George Mason University, USA.

Presenter: Charmaine Cozier
Producers: Jill Collins and Emma Forde
Researcher: Maeve Schaffer
Technical producer: Richard Hannaford
Production Coordinator: Tammy Snow
Editor: Tara McDermott
 
Yes, interesting. Story from Wikipedia:
In 1988, McSweegan joined the National Institutes of Health's National Institute of Allergy and Infectious Diseases, and eventually became program officer for Lyme disease.[5] McSweegan was among a number of Lyme disease experts who were worried about the influence that an advocacy group was having over the NIH, some politicians, and the general public. The group, called Lyme Disease Foundation, promoted the belief in "chronic Lyme disease" and claimed that it required long-term, expensive, and unproven antibiotic treatments. The group was operated by two accountants, received funding from companies that sold intravenous antibiotics, and made claims that lacked scientific support. It also referred people with indeterminate symptoms to chronic Lyme disease-believing doctors who would diagnose them, even though evidence indicated most did not have Lyme disease.[6]

Beginning in 1995, McSweegan denounced the Lyme Disease Foundation in his personal time and continued to speak out against the group's influence on the NIH.[7][5] The NIH eventually removed him from responsibilities, both related and unrelated to Lyme disease. The media characterized the NIH's actions as retaliation for McSweegan blowing the whistle on NIH mismanagement.[8] In 1997, after noticing that his personal web site characterized the Lyme Disease Foundation as "whacko", the NIH suspended him for two weeks.[6] However, the NIH's own lawyers felt there was no basis for firing him. The Lyme Disease Foundation later sued McSweegan for slander, but lost. McSweegan won a countersuit against them. Through the process, he continued to receive positive job reviews.[7]

The NIH said it reassigned him to a post as director of the U.S.-Indo Vaccine Action Program. McSweegan told The Washington Post in 2003 that he did not know he was director of that program, and was instead assigned tasks better suited for an intern.[5]

Reports by the Post and CBS News led Senator Chuck Grassley, then the chairman of the Senate Finance Committee, to demand that the NIH give McSweegan work. In a letter to Health and Human Services Secretary Tommy Thompson, Grassley questioned the NIH's uses of taxpayer money, saying it was unacceptable for the NIH to "come rattling a tin cup asking for more money" when it was forcing taxpayers to "pay for full-time novelists".[7] The NIH promised to investigate the allegations.[9]
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Meh.

You non- US people have no idea. And we- the NIH?- got it wrong.

Who did the bad science, and if my question seems rhetorical, where is the good science? There is far more politics involved than most suspect.

Btw, look who took his place: Phil Baker.
 
duncan said:
Who did the bad science, and if my question seems rhetorical, where is the good science?
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Maybe I should have put "bad science" in quotes to indicate that it was McSweegan's claim. I have no knowledge of the Lyme Disease Foundation or what kind of science they do.

I just thought the story of how he stopped getting work so he started writing books on NIH time was interesting.
 
Sorry. I figured.

You are smart. I get the sense you are a stats person, and I apologize if I'm wrong. My daughter taught stats at Duke, which is a respectable university in the US.

Without that stats on your back, I'd have to be a bozo not to see, geez, you are smarter than I.

But even I know not to believe everything I should read without SOME hesitance - given us.
 
duncan said:
But even I know not to believe everything I should read without SOME hesitance - given us.
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Yeah, I'm not sure if this is only based on his own word. NIH, at least, denied it:
On July 1, NIH issued the following statement: "Dr. McSweegan has always been assigned duties appropriate to his position and pay level. The claim that he is being compensated for doing nothing is completely inaccurate."
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I have been following this for 15 or so years. But knock yourself out. It feels good to proclaim.

Edit. Sorry. @forestglip. In my world, embracing what he says is almost to comparable to wee willy.
 
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duncan said:
I have been following this for 15 or so years.
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If you can give us an update on where things are at now, that would be great @duncan.

duncan said:
Btw, look who took his place: Phil Baker.
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I didn't know/remember who Phil Baker is. This is from the American Lyme Disease Foundation, they are clearly fans. Looks like Baker retired 2023. The situation with Lyme in the US is hard to follow.

Dr. Baker served as Executive Director for over 17 years during which time he enhanced the resources and reach that ALDF provided to its readership. He has devoted his career to research and education about Lyme Disease; prior to his role at ALDF, Dr. Baker worked as a renowned scientist in the field of infectious diseases and is one of the most respected experts on Lyme Disease.

Dr. Baker ushered in a new phase of promoting scientifically accurate information about Lyme disease and confronting proponents of misinformation and unproven theories about diagnosis and treatment. He began his tenure at ALDF by publishing a piece in JAMA addressing unsubstantiated claims related to “chronic Lyme.” He felt passionately about debunking misconceptions and the rapid spread of misinformation related to Lyme Disease. To that end, he established the ALDF section entitled, “Misinformation About Lyme Disease” and “From the Desk of the Executive Director” where many articles designed to address specific areas of concern are presented.

As Lyme disease misinformation continued to spread, Dr. Baker also created a section entitled, “Physicians Resources” so that clinicians in non-endemic regions of the US could become more familiar with current methods used for the diagnosis and treatment of Lyme disease, as well as the results of recent clinical studies. When someone suspects Lyme disease, one of the biggest challenges for the public is discerning who are credible physicians and who are not. To aid in these efforts, the section entitled, “Finding a Physician” was also enhanced.
As Executive Director, he published more than 25 peer-reviewed scientific articles in leading medical journals critical of unproven diagnostic tests and long-term antibiotic treatments for Lyme disease. As a direct result of his efforts, the ALDF website regularly ranks in the top 10 of all websites devoted to Lyme disease and is widely acclaimed both nationally as well as internationally.

When he first took on the role as Executive Director, Dr. Baker stated, “at a time when misinformation is rampant, I am proud to continue to serve the interest of public health by heading the American Lyme Disease Foundation.” We can confidently say he served those interests well and has furthered the awareness and education of Lyme disease. Dr. Baker’s contributions to the field are vast, and he will surely be missed, but the ALDF expresses its gratitude for his many years of leadership, stewardship, and lifelong contributions.
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Oh dear. ::}

It is too late. Maybe tomorrow? This is horrifically wrong. This is glaringly wrong, like Wesley or short. ..


Relative to Phil Baker: Ha!

Ask me who replaced him.
 
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