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.
 
Last edited:
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.
Click to expand...

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.
 
A Wiltshire man has described "the brutal, brutal environment" he's dealing with during an Atlantic rowing challenge.

John Watling, from Lacock, is part of a team attempting what's been dubbed ‘the world's toughest row’ - from the Canaries to Antigua...

...The team is raising money for Lyme Disease UK. John’s 25-year-old daughter Yasmin now has to spend hours on a drip every day after being bitten by a tick at the age of 19.

Yasmin did not see the tick, but discovered an enormous red bullseye rash on her leg and realised she may have been infected with Lyme Disease.

In the years since, Lyme disease has had an enormous and negative impact on her life - leaving her with extreme fatigue, brain fog, memory loss and neck pain among other symptoms.

John said: "It's our honour and privilege to be representing the community of people that have chronic or long-term Lyme disease.

"Their hardship is every day and goes on for years.

https://www.itv.com/news/westcountr...d-in-stormy-weather-during-atlantic-challenge
 
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.
 
Last edited by a moderator:
I have had ME for about 6 years now and for the last couple years reactivated ebv,low nk cell function,low v02 max with 2day cpet,mold hypersensitivity and most recently c19 tested positive for babesia microti co-infection

Due to mold illness part being part of ME.I need to spend lots of time outdoors I have exercise intolerance and do experience Pem but do notice marginal benefits with certain locations

I was curious if anyone may have had success treating tick born infections?

I've been experimenting with nattokinase and serrepaptase without much help thus far

Also on a gut level it's either drinking lots of prune juice and watery stools or complete constipation and very bloated Even fasted for several hours i get acid reflux come up to the throat

Hopefully gut lining isn't damaged from ME or something like Lyme

Im not sure if this is Systemic ME causing autonomic dysfunction and gastropersis or what may be causing this

I can eat not so many calories and still have a very difficult



Thank you
 
I think there isn’t anything saying lyme disease can’t trigger ME, and bacterial infections reportedly triggering ME is definitely not unheard of. As far as treatment goes for lyme disease or Post treatment/chronic lyme disease goes I honestly have no clue.
 
Today at ADLM 2025 (formerly the AACC Annual Scientific Meeting & Clinical Lab Expo), researchers will unveil a blood test developed with the help of artificial intelligence (AI) that identifies Lyme disease sooner and more accurately than the current standard - and that could translate to vastly improved patient outcomes.

Lyme test offers hope for early, effective treatment​

Each year, more than 475,000 Americans are diagnosed with Lyme disease - a number that is only expected to climb due to climate change expanding the range of areas where ticks can live. When caught early, the condition responds well to antibiotics. However, the typical test - called two-tier serology - detects early Lyme accurately only 30% of the time. It's a significant missed opportunity, since more than half of Lyme patients not diagnosed or treated within the first few weeks of infection will develop long-term health problems such as fatigue, neurocognitive issues, and arthritis.

The new test leverages AI to offer major improvement. Its sensitivity and specificity are both over 90%, "meaning 9 out of 10 patients are going to get a correct diagnosis and receive appropriate treatment, which lowers the risk of chronic illness significantly," said Holly Ahern, a microbiologist and chief scientific officer at ACES Diagnostics.
Ahern and team built on research in rhesus macaque monkeys, whose immune response to the bacteria causing Lyme is similar to humans, to develop a panel that looks for 10 proteins (antigens) and is completed as a single test. This approach is an improvement over the two-tier method, which may require up to four tests.

Next, they analyzed blood samples from humans, including 123 people with Lyme disease and 197 uninfected individuals, to test whether adding machine learning to the test could bolster performance by detecting unique immune patterns. "You and I might get infected by the same bacteria, but we might both produce different antibody responses to it," said Ahern. "With these antigens matched with a decision-tree–based classifier, we can actually pick that up in each individual case."

The team found an algorithm that improved accuracy across all disease stages, correctly flagging infection in over 90% of early cases (versus 27% with the standard method). They hope the test - which, according to Ahern, is relatively inexpensive and works on standard laboratory equipment - will be commercially available by the end of 2026.
Click to expand...
 
SS replied in response to our request to avoid MSN:
Ok but some of the original sources are subscription only (eg Telegraph) and so not accessible to most people, or they insist you accept all cookies and advertising on their sites so it's much the same.
I have an ad blocker and I clear all trackers whenever I've been online anyway so it doesn't bother me.
Click to expand...
 
Interesting that she thinks if it doesn't bother her we should all be happy with it. If some supposedly important info is only available in the Telegraph, I tend to think it's not worth posting.
 
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.
  • Like
 
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]
Click to expand...
 
Meh.

Non- US people have little idea of what it has been like on the front line in the Lyme wars..

Who did the bad science? Who did the good science? These fundamental questions to this day remain largely unresolved. There is far more politics involved than most suspect.

Btw, look who took his place: Phil Baker.
 
Last edited:
duncan said:
Who did the bad science, and if my question seems rhetorical, where is the good science?
Click to expand...
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.
 
You must log in or register to reply here.
Back
Top Bottom