Dusenbery & Rehmeyer in Slate: The Science Isn't Settled on Chronic Lyme

[Kalliope]

Slate: The Science Isn't Settles on Chronic Lyme
by Maya Dusenbery and Julie Rehmeyer

That means that ironically, those who howl that chronic Lyme is “fake” BECAUSE SCIENCE aren’t just being unscientific, they’re also impeding science. On top of that, they are attacking extremely vulnerable patients and feeding sexist stereotypes. So cut the contempt. Let’s do the science and figure this disease out.

 

[Kalliope]

For those interested in the subject, the podcast Science vs recently had an episode on Lyme: Lyme Disease: How Scary Is It?

This week, we’re entering the Lyme Wars. We’re asking: what is Lyme disease? How do you get it? How do you know you have it? And if you get infected, are you stuck with it forever? To find out we talk to neurologist Dr John Halperin, neuropsychology researcher Dr Kathleen Bechtold, and a Lyme patient we’re calling Emily.

(wonder if they' do an episode on PACE?..)

 

[duncan]

That means that ironically, those who howl that chronic Lyme is “fake” BECAUSE SCIENCE aren’t just being unscientific, they’re also impeding science. On top of that, they are attacking extremely vulnerable patients and feeding sexist stereotypes. So cut the contempt. Let’s do the science and figure this disease out.

Pretty good article.

As a rule, I try to avoid talking about chronic Lyme. It's better and simpler and clearer and less controversial to talk about late stage or tertiary Lyme, just as one would syphilis.

What most probably don't realize is there has been an active campaign to delegitimize the concept of Lyme disease that is chronic. Not merely to argue that Lyme cannot go chronic, but more specifically to attack the label "chronic Lyme", or worse, the character of those diagnosed with it. It has gone so far as to state that in order to get the stamp of chronic Lyme, patients must never have had Lyme at all, ie, a criteria for a diagnosis of chronic Lyme is to never have had Lyme in the first place. This runs counter to any other infectious disease of which I am aware that can be treatment refractory.

 

[duncan]

To find out we talk to neurologist Dr John Halperin, neuropsychology researcher Dr Kathleen Bechtold, and a Lyme patient we’re calling Emily.

John Halperin? Imagine asking Crawley to weigh in on whether ME/CFS is purely a biological disease that rarely is curable.

 

[duncan]

This is a very good article, but it - in my opinion - still may stumble on phrasing provided by mainstream Lyme.

For instance: "Widely accepted studies have found that about 10-20 percent of those treated for Lyme are left with lingering symptoms"

"Lingering" symptoms? Why not just say in 10-20 percent symptoms remain? Better yet, about 10-20 percent are uncured, or do not recover?

This is a strong, sympathetic article that makes good points. My question would be, Is it the takeaway for readers that researchers never have been able to prove that Lyme disease has been cured in perhaps as many as 20% of all who contract the disease? So one in five who are infected stay sick indefinitely.

For me, it's not so much that patients must prove they are still infected - how absurd is that? Rather, the key is retracing Lyme History to perhaps see that it has never been adequately proven that Lyme is reliably eradicated in what approximates 100% of those infected when treated with an orthodox abx regimen.

 

[Kalliope]

Francis Collins wrote this in NIH Director's Blog from yesterday:
Precision Diagnosis for Tick-Borne Diseases?

If you get sick, getting a definitive diagnosis in order to get the right treatment for your tick’s particular pathogen(s) can involve multiple tests at a cost of about $200 each. Wouldn’t it be great if there was one simple, low-cost way to test for all major tickborne diseases? Such a test is now under development by NIH-funded researchers, and it recently passed an encouraging early research milestone.

 

[duncan]

Lipkin is doing a panel. Pretty cool stuff, in theory. He's got Brian Fallon working on it, too (Fallon used to be a darling in the Lyme advocacy community). Not sure how much it improves accuracy issues, but I like getting multiple pathogens tested for in one test.

Tick-borne diseases come in packages these days, so testing accordingly is a good thing.

Edited to add: Want to see how Lyme politics impact even Lipkin? Now, I am doing this from memory, but I think this new panel does not include Bartonella. This would be in line with IDSA dogma, and contrary to ILADS, and kinda weird as most who test positive for Lyme in my neck of the wood eventually get tested for Bartonella as well. I will check and see if I can find that reference.

Ok, according to Science Daily, the 8 pathogens tested for include Anaplasmosis, Babesia microti, Borrelia Burgdorferi, Borrelia Miyamotoi, Ehrlichia, Rocky Mountain Spotted Fever, Heartland Virus and Powassen Virus.

Sigh. I see they stipulated the 8 in @Kalliope link to the NIH - which I read so I have no excuse for not referencing it.

 

[Arvo]

Rather, the key is retracing Lyme History to perhaps see that it has never been adequately proven that Lyme is reliably eradicated in what approximates 100% of those infected when treated with an orthodox abx regimen.

I haven't dived into it, but a while back I did a casual newspaper search in the dutch newspaper databank, and was surprised to learn that in the early 90s it was accepted that antibiotic treatment didn't always work and that a portion of the Lyme patients remained symptomatic and in need of using a wheelchair after.

It would be interesting to go through the history and piece together what happened, and what caused the change into the dogma that a short anitbiotic course always leads to being cured and tick-infection free. Due to snippets of info and timing I would not be surprised if the upcoming psychiatric narrative of chronic fatigue syndrome, which started to gain steam very shorty after, will be involved. The idea that patients get an infection and then "afterwards" experience "fatigue" and unjustly think they are still sick, which (according to bps lore) is a cognitive-behavioural mechanism "perpetuating" symptoms and/or making patiënts focus too much on normal physical sensations - this can be fit nicely over a situation where the antibiotics course did not lead to cure.