Im being evangelized at about lyme treatmentd agsin and its getting under my skin

[Hip]

@Hip , do you know how I could find criticidms of or responses to a specifics study. Or how to contact the authors

Sometimes you find critical responses to a study published on PubMed, but that's quite rare.

You can search for an author's email by trying to find their university or institutional bio page. Usually just placing their name into google, followed by the words "contact" or "email" works.

 

[frozenborderline]

I guess I'd have to have more evidence than a single case study to take iv ceftriaxone. Its disturbing to know persistence of lyme to that level is possible, but they dont totally make the connection btwn the persistence itself--and that it's not in asymptomatic people (how common is it now)--and the disease course

 

[frozenborderline]

There are more studies of its kind. Maybe @duncan could jump in

I had only heard of primate studies showing the lyme persisters, and also the majority of the PTLDS antibiotics studies were negative results. Those are separate issues , but related.

At this point I'm not sure I believe it more than the lightning effect. Probably a bit more , but not much more

 

[duncan]

And even this study which is definitely the only study I've seen of its type , was only able to get modest results from s fairly extreme treatment regimen. It makes it seem like dormant Lyme , if it does exist , is an indicator of immune health or the terrain its on, rather than being important in and of itself.

I'd be curious to know what you mean by dormant Lyme

Every review I've seen of rcts of antibiotics for post treatment Lyme has been negative ,

I'm even more curious to know what you mean by post treatment Lyme.

Every review I've seen of rcts of antibiotics for post treatment Lyme has been negative , and I've rarely heard of Lyme doctors that weren't outright quacks. Ill have to think this over , but I'm not sure what conclusion I should draw. How do I find out if there were responses or criticisms to this article.

I cannot speak to where you've been looking at Lyme doctors. Regardless, I'd recommend focusing on your lab results so you're educated enough to weed through and past posers and incompetents.
As to this article, oh my. This is the tip of the iceberg. In the past ten to 15 years there's been a plethora of studies that similarly draw strikingly different conclusions from the cluster of circular reasoning studies that sprung up around the late 80's and early 90's.

 

[frozenborderline]

I'd be curious to know what you mean by dormant Lyme

The study talks about a cyst form that the spirochete goes into, presumably to evade attack but also makes it less active, its spreading less, later in disease. That's what I mean by it

cannot speak to where you've been looking at Lyme doctors. Regardless, I'd recommend focusing on your lab results so you're educated enough to weed through and past posers and incompetents.
As to this article, oh my. This is the tip of the iceberg. In the past ten to 15 years there's been a plethora of studies that similarly draw strikingly different conclusions from the cluster of circular reasoning studies that sprung up around the late 80's and early 90's.

any doctor that uses igenex testing or treats just based on symptoms which could be sequelae and not active infection, I dont trust. I think that approach is bs. Or if you're going to do it treat it as experimental, not as if you know for sure the disease is there based on simplistic reasoning and a hunch

I'm even more curious to know what you mean by post treatment Lyme.

That's easiest to answer. The official name for what people call chronic lyme, Post Treatment Lyme Disease Syndrome.

That's what the CDC calls it. The 1/5th or 1/4th of people that get the infection and get it treated in reasonable time and with enough antibiotics but have lingering problems

I feel fairly sure it causes immune changes and inflammation, and that environmental factors are a reason that the 1/4th that are sick are sick when many get the infection and are fine. I could be wrong, but a lot of things in my case are diagnosed, abnormal lab results and imaging that point to lyme and mold toxins causing mcas, inflammation that then both caused neuro symptoms and damaged joints, while also suppressing adaptive immunity and allowing for waves of viral infections which kept the progression of disease going further.

Now, sometimes a simple explanation is best, and so some lyme people tell me it's just lyme, but that isnt congruent with the facts I know yet.

 

[frozenborderline]

I'd have to see a bunch of the studies you're talking about and critiques of them, there must be critiques out there, since it's such a controversial area. And see both sides and think for myself

 

[duncan]

The study talks about a cyst form that the spirochete goes into, presumably to evade attack but also makes it less active, its spreading less, later in disease. That's what I mean by it

Understood. Also, persister cells in general. But this is not necessarily the same as asymptomatic Lyme. Even Willy Burgdorfer maintained you can have Lyme and be asymptomatic for a time.

any doctor that uses igenex testing or treats just based on symptoms which could be sequelae and not active infection, I dont trust. I think that approach is bs. Or if you're going to do it treat it as experimental, not as if you know for sure the disease is there based on simplistic reasoning and a hunch

Look, I've never used Igenex, but I love their approach to certain tests. There's intelligence and knowledge there. But if you don't like them, stick with the three FDA-approved tests. But I'd acquaint myself with the strengths and weaknesses of each. That's just me, though.

That's easiest to answer. The official name for what people call chronic lyme, Post Treatment Lyme Disease Syndrome.

No. You can have chronic Lyme and never have been treated, right? Accordingly, you cannot have PTLDS. More to the point:

That's what the CDC calls it. The 1/5th or 1/4th of people that get the infection and get it treated in reasonable time and with enough antibiotics but have lingering problems

Enough antibiotics? Who says? Remember, early investigators were convinced Bb was viral because normal courses of abx failed too frequently. As for being treated in a reasonable time, very many were/are not - which is why so very many have Late Stage Lyme.

I'd have to see a bunch of the studies you're talking about and critiques of them, there must be critiques out there, since it's such a controversial area. And see both sides and think for myself

Smart. They're out there. Check out Kim Lewis and Zhang and Monica Embers and a boatload of others. Drawing your own conclusions is the only way.

 

[frozenborderline]

No. You can have chronic Lyme and never have been treated, right? Accordingly, you cannot have PTLDS. More to the point:

No what? PTLDS is just as valid a name for what I have as "chronic lyme". I had acute lyme (unquestionably, rash, fever, positive standard tests -by normal PCP, not biased LLMD) and I got it treated and it cleared up most symptoms dramatically at first, and then they came back but in different form. How do I know it's not some kind of sequelae ?

And if we dont know what's causing the symptoms isnt it correct to call it post treatment lyme disease syndrome ?
https://www.cdc.gov/lyme/postLDS/index.html

 

[frozenborderline]

As for being treated in a reasonable time, very many were/are not - which is why so very many have Late Stage Lyme.

But I'm referring to the people who were treated in a reasonable time , which is a decent sized group. . A different group. I cant speak to late stage disseminated neuro lyme.

And as with covid, the severity or correct treatment of the initial infection doesn't necessarily predict severity of the disease, which is why I think there's more going on than an underlying infection.

 

[frozenborderline]

Enough antibiotics? Who says?

The CDC has failed me/cfs people a lot, but I dont think the opposite of what they say is always true , and I have no reason to doubt both their consensus and the consensus of other scientists on what enough antibiotics are.

But I've also had more than the standard course. I've also seen many people on antibiotic regimens for years and years and years that just doesn't help, doesn't help like the environmental treatments and cci treatments and so on do. There are always exceptions. The exceptions are enough to give me pause. But it's not like it's some obvious potent cure being kept from people by a grand conspiracy. The truth is more boring and murky and sad then that

 

[duncan]

No what? PTLDS is just as valid a name for what I have as "chronic lyme". I had acute lyme (unquestionably, rash, fever, positive standard tests -by normal PCP, not biased LLMD) and I got it treated and it cleared up most symptoms dramatically at first, and then they came back but in different form. How do I know it's not some kind of sequelae ?

Sorry, I forget sometimes to more fully explain. My "No" referred to there are cases of Lyme that are not Early Lyme that cannot be PTLDS. It had nothing to do with you per se..

And if we dont know what's causing the symptoms isnt it correct to call it post treatment lyme disease syndrome ?

No, imo it is not. There is an implication that the treatment should have been enough, and we do not know that. Would you say Post treatment cancer syndrome if you couldn't check the status of the cancer, but the patient still had cancer symptoms?

And as with covid, the severity or correct treatment of the initial infection doesn't necessarily predict severity of the disease, which is why I think there's more going on than an underlying infection.

So do a lot of other people, including many of the LLMDs (btw, I've also never been to an LLMD, but I've spoken to several and appreciate their efforts to find answers to persistent symptoms.)

 

[Martin aka paused||M.E.]

I hope we can all agree that we don't know everything regarding CLD and good research is still needed.

 

[duncan]

The CDC has failed me/cfs people a lot, but I dont think the opposite of what they say is always true , and I have no reason to doubt both their consensus and the consensus of other scientists on what enough antibiotics are.

I think you may want to peel back that onion - on your own - a little more. The history of how Lyme diagnostics and treatment got to their untenable current position might surprise you a little

But I've also had more than the standard course. I've also seen many people on antibiotic regimens for years and years and years that just doesn't help, doesn't help like the environmental treatments and cci treatments and so on do. There are always exceptions. The exceptions are enough to give me pause. But it's not like it's some obvious potent cure being kept from people by a grand conspiracy. The truth is more boring and murky and sad then that

.Agreed. I am a treatment failure.

 

[frozenborderline]

No, imo it is not. There is an implication that the treatment should have been enough, and we do not know that. Would you say Post treatment cancer syndrome if you couldn't check the status of the cancer, but the patient still had cancer symptoms?

What about post polio syndrome or post viral fatigue syndrome? I consider those valid. There are tons more of post infectious syndromes where the infecting agent is presumed gone, but some are named differently, like guillain barre, which can be triggered by an infection or certain types of cardiomyopathy associated with autoimmunity post infection. So what's wrong with just starting with the idea we know nothing and being open minded. How do you know the percentage of us who had treatment and still had symptoms, have lyme in our tissues ,? I'm trying to be open to the theory, but it's not open minded to be convinced of something before its properly studied. Or moreover to be convinced of it as a universal thing. I understand having great effects from treatment could cause a revelation, but no guarantee those are universal. I would take you at your word for what you said happened in your body and your intuition, but I dont thin that can be generalized

 

[frozenborderline]

think you may want to peel back that onion - on your own - a little more. The history of how Lyme diagnostics and treatment got to their untenable current position might surprise you a little

What do you mean by that, and how do you know I haven't looked into it? I looked into igenex and even the most chronic lyme believing researchers like Fallon, think its bunk and they show their work pretty well. I believe the truth could be yetuncovered, I dont think this is a closed case, but I think no test is better than a wholly inaccurate test and the CDC tests measure something pretty well, and are better than igenex and most private labs

Not saying they are perfect. But I think they have more false negatives than false positives. If they are wrong, it's in one direction. Someone who tests positive on those , I'm sure had lyme. Otherwise, its uncertain.

 

[Martin aka paused||M.E.]

What do you mean by that, and how do you know I haven't looked into it? I looked into igenex and even the most chronic lyme believing researchers like Fallon, think its bunk and they show their work pretty well. I believe the truth could be yetuncovered, I dont think this is a closed case, but I think no test is better than a wholly inaccurate test and the CDC tests measure something pretty well, and are better than igenex and most private labs

Not saying they are perfect. But I think they have more false negatives than false positives. If they are wrong, it's in one direction. Someone who tests positive on those , I'm sure had lyme. Otherwise, its uncertain.

What are the CDC tests?

 

[frozenborderline]

Sapis research is interesting. I will have to contact her and dig into this.

One thing that's true is with wilderness destruction and ecological damage in the US we will have a lyme epidemic like never seen before. Whatever the lasting symptoms are caused by, they're devastating. And its spreading. Every time we get rid of natural predators , that are on top of a trophic cascade, we unleash havoc on rural/suburban ecosystems. We get rid of the wolves and the coyotes and diverse predators and bears even and diverse grasses and birds!! And we are left with monoculture niches, tons and tons and tons of deer not kept in check, and mice , and simplified ecosystems that are prone to creating a habitat for lyme to spread. This didnt happen as often when we had intact ecosystems in most of the country

 

[frozenborderline]

What are the CDC tests?

Western blog and elisa. But the specific bands on both I forget, I dont have this memorized, am bedridden and sick currently.

Elisa refers to a type of pcr test used for many otherthings, and western blot is similarly general, but a western blot and elisa for lyme is a standardizedthing with the CDC, whatever bands they use for both I trust,

 

[frozenborderline]

I sort of have to imagine it at an ecological scale. The balance of bacteria and fungi and plants and whatnot, within and without. Any infection that is chronic is a dysbiosis. It fills a niche that's there for the taking

 

[Martin aka paused||M.E.]

Western blog and elisa. But the specific bands on both I forget, I dont have this memorized, am bedridden and sick currently.

Elisa refers to a type of pcr test used for many otherthings, and western blot is similarly general, but a western blot and elisa for lyme is a standardizedthing with the CDC, whatever bands they use for both I trust,

These are also the tests that the German CDC” (=RKI) questions. And I've did them in multiple labs a bc of highly contradictory results. It's different in your case bc you had the clinical symptoms. But if you don't... I would add a question mark...
RKI: “ Basically, a positive antibody result only speaks for Lyme borreliosis in connection with corresponding clinical symptoms and other CSF findings.”