John Hopkins: Widespread Neuro-inflammation in Post Treatment Lyme disease

Belbyr

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https://www.technologynetworks.com/...Ew1B1Hio0_fQ_u-Shuvb4TrTR82Y6l4SofubmfHS2Nwx4

Now, in a small study, Johns Hopkins Medicine researchers report they have used an advanced form of brain scan to show that 12 people with documented post-treatment Lyme disease syndrome (PTLDS) all show elevation of a chemical marker of widespread brain inflammation, compared with 19 healthy controls.

Results of the study, published in the Journal of Neuroinflammation, suggest new avenues for treating the long-term fatigue, pain, sleep disruption and “brain fog” associated with PTLDS, the researchers say.

“There’s been literature suggesting that patients with PTLDS have some chronic inflammation somewhere, but until now we weren’t able to safely probe the brain itself to verify it,” says Jennifer Coughlin, M.D., associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine, and one of the first authors of the study report.
 

duncan

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No such thing as post treatment Lyme Disease Syndrome any more than there is such a thing as post treatment Stage 4 Lung Cancer Syndrome.

It's just Lyme disease continuing to generate symptoms - until they can prove unequivocally it isn't.
 

Belbyr

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No such thing as post treatment Lyme Disease Syndrome any more than there is such a thing as post treatment Stage 4 Lung Cancer Syndrome.

It's just Lyme disease continuing to generate symptoms - until they can prove unequivocally it isn't.
This hasn't been proven to be the case yet. Columbia University failed to bring lasting relief to lyme disease sufferers with prolonged IV antibiotic therapy. There is evidence that borrelia can exist in humans and not cause illness.

We are looking at immune dysfunction in these illnesses.
 

Jackb23

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Little is known about what causes PTLDS or how to treat it, and while studies have shown that people with PTLDS have elevated markers of inflammation—such as the chemokine CCL19—in their bloodstreams, it has not been clear where that inflammation may be occurring.” (Article).


The cytokine encoded by this gene may play a role in normal lymphocyte recirculation and homing. It also plays an important role in trafficking of T cells in thymus, and in T cell and B cell migration to secondary lymphoid organs. It specifically binds to chemokine receptor CCR7.” (https://www.ncbi.nlm.nih.gov/gene?Db=gene&Cmd=ShowDetailView&TermToSearch=6363)

To be honest, I don’t have the faintest clue about the immune biology around all of this, but maybe some of these research tag-lines I dig at (many of which intertwine with me/cfs) will be of use to someone who does.
 

duncan

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Well, no, I fear you have it a bit backwards, @Belbyr . People meet the clinical requirements for a Lyme diagnosis. At this precise moment, 99 out of 100 patients actually will not know if they are actively infected with Lyme. But if they satisfy the 2T in the US, then they get a formal diagnosis.You assume they are infected because they comport to the algorithm.

Take those patients with their formal diagnoses and give them two weeks of doxy. Hell, give them 4 weeks of doxy. If 20 % of those patients still have symptoms, are you going to tell me that they no longer have Lyme disease? Are are you instead going to say the treatment protocol failed?

The correct answer is the latter, because that is what 40 years of testing has taught us. What 40 years of testing has NOT taught us is that the political entity "PTLDS" actually exists anywhere but the fantasies of IDSA wannabies
 
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Belbyr

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All I am doing is repeating what Columbia University is finding. They are not part of idsa or ilads. Long term antibiotic treatment failed but there is some evidence the bacteria still exist. I stand by my statement that the immune system is at fault.
 

duncan

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Long term antibiotic treatment failed but there is some evidence the bacteria still exist. I stand by my statement
If you are referring to Fallon's work, he did not say long term abx failed. You may wish to reexamine the three Lyme RCTs.

Regardless, you have a point: The immune system MAY BE at fault. But since the early days of Lyme research there has been a steady drip of research that suggests 10 - 20 % of patients treated are not cured. There have been ample animal studies demonstrating Bb persistence as cause for symptoms, and a long line of case studies with humans doing the same (Vicky Logan or Neil Spector ring a bell?).

So why introduce a medical construct like PTLDS when there is evidence that persistence of Bb in the face of abx is real and likely causatory? Doesn't that strike you even a little bit as sleight of hand?
 

Belbyr

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I think there can be such a thing as PTLDS. Look at all the dysautonomia's and CFS. I think the evidence is almost in stone now that these illnesses were started by a triggering event/infection that creates a chronic disease state. It's possible this can happen in lyme as well.

My hope is that the 'chronic' lyme, POTS, CFS, Fibro, and other's research will all converge on a point of cause/effect/treatment. Couple these findings with the new autoimmune findings in RA, we might be getting somewhere.
 

duncan

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Plausibility can be a slippery slope. We need more data. But who's looking? People assume Lyme research continues unabated, but what research is being done is mostly limited to acute early Lyme, and to non-direct diagnostics.

At 350,000 Lyme cases annually in the US alone, with a cure rate at say 80%, how many sick are left behind without a relative amount of research $'s being directed at them? Tens of thousands? Hundreds of thousands? Who do you imagine is looking? John's Hopkins? Aucott and company are supposedly parsing down into PTLDS, but who is dedicated to late stage Lyme?

This is a question that should resonate with anyone within striking range of a tick.
 

junkcrap50

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Take those patients with their formal diagnoses and give them two weeks of doxy. Hell, give them 4 weeks of doxy. If 20 % of those patients still have symptoms, are you going to tell me that they no longer have Lyme disease? Are are you instead going to say the treatment protocol failed?
I thought immediate lyme treatment was more like at least 6 weeks of doxy. More like 8 weeks. That is, treatment from a somewhat lyme-literate doctor. I wouldn't want to risk chronic lyme with only 2 weeks of antibiotics.
 

duncan

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Most clinicians would be unfamiliar with ILADS doctrine, or if they were familiar, unlikely to embrace them for fear of, at the least, painting outside the lines, and worse, perhaps retribution.
 

debored13

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All I am doing is repeating what Columbia University is finding. They are not part of idsa or ilads. Long term antibiotic treatment failed but there is some evidence the bacteria still exist. I stand by my statement that the immune system is at fault.
There was one study showing significant benefit in post treatment lyme from iv ceftriaxone. It doesn’t prove that iv antibiotics should be the main treatment but it’s not true that there are no studies. The question of whether long term abx help is totally separate from whether persistent infection exists though! Of course there’s some lyme quacks that push years of abx w no evidence of benefit, but there also is certainly some evidence that points toward borrelia persistence in animals after 3 weeks doxy, and also points toward borrelia forming cyst forms that are antibiotic resistant. The anti chronic Lyme crowd seems solely focused on proving antibiotic treatment doesn’t work rather than answering the question of lyme persistence, which could possibly open the door for new treatments.
 

debored13

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I thought immediate lyme treatment was more like at least 6 weeks of doxy. More like 8 weeks. That is, treatment from a somewhat lyme-literate doctor. I wouldn't want to risk chronic lyme with only 2 weeks of antibiotics.
It’s normally 3 weeks of doxy. If you don’t know about the whole chronic Lyme controversy and go to a regular pcp with a clear cut lyme case that’s what you get.
 

junkcrap50

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It’s normally 3 weeks of doxy. If you don’t know about the whole chronic Lyme controversy and go to a regular pcp with a clear cut lyme case that’s what you get.
Oh, I know all about chronic lyme and its contorversies (unless your talking about something specific). I have a family member who has it. And that's why I kind of skoff at just 3 weeks of antibiotics. I thought that's the regular PCP response who recognizes lyme as a real thing. I thought it was longer. In my case, if I got bit by a tick, I would want longer than 3 weeks.