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'The Science Isn’t Settled on Chronic Lyme' by Rehmeyer and Dusenberry

Ema

Senior Member
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4,728
Location
Midwest USA
Fantastic Slate article by Julie Rehmeyer and Maya Dusenberry.

As journalists who have studied other contested diseases, the disdain and scientific drumbeating of the critics of chronic Lyme raised our suspicions. One of us (Julie Rehmeyer) has written extensively about bad research practices in myalgic encephalomyelitis/chronic fatigue syndrome, aka ME/CFS, and published a memoir about navigating a poorly understood illness, Through the Shadowlands: A Science Writer’s Odyssey Into an Illness Science Doesn’t Understand. And one of us (Maya Dusenbery) has written a book about gender bias in medicine, Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick. We’ve dug into the science and politics of Lyme, and we’ve found that this dismissive position doesn’t have a scientific leg to stand on—and further, that the dynamics around the illness are significantly driven by sexism.
 
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52
Great article.

I had a bulls-eye rash documented by my GP. My IgM showed Lyme-specific bands.

But...my IgM never switched over to IgG, even a year later. So all the doctors say is mumble mumble "false negative?" mumble mumble "who knows?" (go away).

Freakin' insane.
 

Hip

Senior Member
Messages
17,482
A new Lyme study published just recently found good evidence for chronic Borrelia infection in Lyme patients:
Using multiple corroborative detection methods, we showed that patients with persistent Lyme disease symptoms may have ongoing spirochetal infection despite antibiotic treatment, similar to findings in non-human primates.
 

RWP (Rest without Peace)

Senior Member
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205
@Ema

Excellent article! I think these two make a dynamic duo, similar to the terrific trio of Dimmock, Levine and Wilder who wrote the "ME/CFS:What Every Family Physician Needs to Know" article for the New York State Academy of Family Physicians e-magazine earlier this year!

Well-researched, and of course, very well written.

RWP + PWR
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
A new Lyme study published just recently found good evidence for chronic Borrelia infection in Lyme patients:


Thanks @Hip. That study has clarified why people with a Borrelia infection might have less severe symptoms on long term antibiotics but still do not get completely better.

The antibiotics seem to be bacteriostatic rather than bactericidal (ie they don’t completely kill the bacteria).

It’s disappointing to those of us who thought antibiotics could give a complete cure But anything is better than the terrible pain and suffering of the full blown infection.
 

Hip

Senior Member
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17,482
From what I understand, @Mel9, the significance of that study is that it has demonstrated for the first time (as far as I am aware) that Borrelia is present in chronic Lyme patients. As we know, there is this longstanding debate as to whether the symptoms of chronic Lyme are due to some after effect of a Borrelia infection, or whether they are caused by the ongoing presence of Borrelia in the body. This study would seem to support the latter theory.

Up until now, the only study that has found long term Borrelia was a primate study in monkeys, which found chronic Borrelia infection in these animals. This latest study now extends that finding to humans.
 

msf

Senior Member
Messages
3,650
Morgellons disease managed to show the medical establishment in an even poorer light than Lyme itself, if that was possible. Somehow, supposedly intelligent doctors got it into their heads that the cases they were seeing were the result of people looking up the wackiest disease they could find in a medical tome, and then introducing bits of fabric into self inflicted wounds...and they thought the patients were crazy!
 

msf

Senior Member
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3,650
By the way @duncan, enjoy the feeling of vindication, you deserve it for your tireless efforts in educating people on this forum about this disease. Hopefully now reasonable people will actually try to look for some effective treatments for chronic Lyme.
 

duncan

Senior Member
Messages
2,240
Thanks, @msf. This is a great article and is signifies a lot I think to the Lyme community,

Relative to the Sapi study alluded to by @Hip. I'm waiting for the other shoe to drop. You know that IDSA types are not likely to let this go unchallenged - especially with new IDSA Lyme Guidelines slated to be released this Fall.

The ALDF recently let loose with another salvo that can be interpreted as demeaning chronic Lyme patients' symptoms. Will that prove to be a hint of things to come this Autumn?

I'm curious how they will attack this study, though. Contamination? Spirochetes not viable? Via Morgellons? The ability of Sapi and company? All of the above?

I'm watching but so far I've yet to see a response.
 
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184
Sure a lot of attention on Lyme. Studies indicate there may be numerous triggers for CFS, including Valley Fever fungal infection. Valley fever is far more widespread than most people think, including most anywere in the Western half of the US. Vacationers can pick it up, too. Work has been ongoing since the early 1960's on a vaccine. Slow going. New evidence it can work. The vaccine appears to work for dogs. So some progress starting to happen. https://healthsciences.arizona.edu/...ws-vaccine-protects-dogs-against-valley-fever
 
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5
@cheeseater, would you mind citing studies indicating valley fever triggers me/cfs? My quick web search mostly turned up links to this forum.
I know five people who've had valley fever. One had multiple surgeries removing the fungus from their lungs.
 

SWAlexander

Senior Member
Messages
1,306
The Quiet Epidemic. https://www.thequietepidemic.com/
Streaming May 16th on

According to a new CDC estimate, 476,000 people are diagnosed with Lyme disease yearly in the United States alone. Even with prompt treatment, 10-20% of people go on to suffer long-term, debilitating symptoms. An unknown number of people remain undiagnosed and untreated for years, decades or even a lifetime. Without an accurate diagnostic test, the true scale of this epidemic remains unknown.

Documentary filmmaking has a proven track record of moving the needle on long-ignored social issues. We made The Quiet Epidemic to communicate the challenges we face and the solutions we need—to audiences far beyond the Lyme community. Change can happen faster when more people care about our cause.

We envision a world in which
 Chronic Lyme disease is recognized,
 the interests of patients are prioritized, and accurate diagnostics and treatments are accessible. The Quiet Epidemic is not just a movie, it’s a movement.
 

Osaca

Senior Member
Messages
148
New study by the CDC: A small study following 79 patients with Lyme neuroborreliosis for one year after they had been treated with antibiotics suggests a connection between an overactive immune reaction and persistent Lyme Disease symptoms.

https://wwwnc.cdc.gov/eid/article/29/6/22-1685_article
Seems quite familar to ME/CFS with our friends IFN-a and IFN-gamma once again stealing the show. Let's hope the CDC is currently running similar studies for Long-Covid where there's an abundance of new patients.