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

[frozenborderline]

I did have a very normal, non controversial. CDC positive lyme case at the BEGINNING of my case , but after taking some subsequent rounds of antibiotics and also reading literature I came to the conclusion that the lyme wasnt the root issue and wasnt likely chronic but rather triggered disease.

I've also mapped out a lot of my personal idiosyncratic health issues and comorbidities that also overlap with many me/cfs patients , and turned it into a novel model of me/cfs etiology. And I never thought 5hat a single anecdote would derail my ideas and have me doubting what I and the expert doctors around me thought was right, until I sort of started to get hypnotized, in a dreadful, dark way, with this evangelist of lyme cures.

Later I can post 5he text of our messages. I dont necessarily believe he's correct
And I'm not sure whether this should be in here or in emotional support

I've always said theology is more intertwined with science than people think. Not in a cheesy new agey, way, but in a way that one tries to map the whole world and its laws and properties and what moves it. what caused sickness and health used to be considered a "spiritual" matter. I'm no mind body-ist, I just mean this to mean that different ideological schemas are competing for the same set of facts. A psychiatrist fills the role a shaman would fill in a premodern society, perhaps. Or they could just overlap without one deciding which is correct.

But yeah, I'll have to elaborate more to get more precise feedback, I'm a bit perturbed/derealized rn. normally I tend to want to be disproved scientifically bc I think I'm getting closer to the truth, and every time I'm disproven I am closer to the empirical facts and a cure.

Sometimes someone comes along with a. Theory they are so confident in, based on their experience, that it does seem like it could not just adjust but break my models of what this disease is. It wouldn't necessarily bother me if it was about disillusionment with my lost years searching for s cure and then getting a different one, and the sense of waste, if it 2was also a sure bet. But no , it's just another biohacker,but this one seems to think in evangelical terms about their discovery. He is sure that he knows far more than me just through his short course of treatment for lyme, that finally worked.
I've heard similar stories before, and put them off to the anti inflammatory effects of some antibiotics , or maybe some people having some dysbiosis . But I never saw someone with this fervor that he was correct before.

 

[frozenborderline]

The central idea he has seems to be: all of the patients who get lyme and then have a sort of progressive course, fast or long, downhill... have chronic disseminated lyme, whether or not they test positive on normal CDC tests, and whether or not they have CFS symptoms and diagnosis. If you had Lyme as a trigger and you have any progressive course, fast or slow, even with partial remissions, he thinks you definitely simply have chronic lyme and that you need long term antibiotics. and that the only treatment is tons of antibiotics, preferably six months of rocephin (ceftriaxone). And that, despite having major spinal and neck and autonomic issues, mcas, and pots , and seeming to be in agreement with a team of experts that the etiology and pathology of my body is focused on the upper cervical spine problems and brainstem compression , that this is all secondary and caused by lyme.
The theory has a certain kind of internal logic, and I dont doubt this person's recovery in particular. It somehow so unnerves me though. Bc the rational and empirical part of me thinks it doesn't make sense totally coherently and is just an overly sparse and brutish application of occams razor, without a properly objective guidance to the hand that wields it, effectively cutting every hair off and even skinning the person using the razor, if the metaphor holds.

the upside of a theory like 5this is its simple, which is both a theoretical and empirical virtue. Its theoretically sound in that it's truly possible that If lyme was a pathogen that tended to evade most antibacterial drugs it would act like that. it would wreak havoc in the joints and cause brain inflammation, and it's possible that it would cause a mysterious complex disease with both immune deficiencies and excesses in different parts of the immune system, and it would seem like a more complex disease than it is and it would be treated with a simple course of the right antibiotics

Now for some of the downsides of the above theory : testing it , in me, would take six months, and more money. And while we dont necessarily have a zero sum system in our body, and other treatments could work alongside antibiotics, for an ideal test, you're supposed to do just this treatment. So for me personally, I'd be trying out something I only tried bc of a single theory, at the 3expense of everything I've worked for , and go into great pain bc of waiting an excessive time to get a needed surgery.
Also, while the theory claims to be testable just by that, I question why there aren't more recovery stories like that. There are others, dont get me wrong, but not necessarily more than I've seen for the most common recovery story types on this forum. So why even test it?
I guess I tend to think that the heuristic of I tend to take a living breathing example of recovery from this illness more seriously than I do all of the scientific research in the world. Bc rbe research is slow, and the biohacking is faster if messier. But this person isnt exactly an ideal example bc he was sick, but not with standard cfs symptoms. I guess we have some in common though.
Finally i wonder if while heuristics are intuitive and useful, if they can sometimes be overly relied upon, in a way that doesn't use them alongside other empirical and theoretical devices, but relies on them and the primal instincts like fear --fear of an unknown pathogen , to spread the idea. I'm not suggesting th3res a psychological component of the illness in the least. Just that when an open embrace of uncertainty yields to fear , we will cling to sometimes overly crude devices to stay afloat... a crude device like assuming that once one has had lyme one always has it, without skepticism toward that idea, could be a very very compelling and fear inducing and irrefutable idea that can do harm. Lyme is nasty , for sure. But if you start with the bayesian prior that you are fairly certain that lyme can stay in one forever, then it takes on a certain mythological characteristic and even if you dont think it is likely that it does stay in one forever, the mere idea that it can, will continue to haunt you.


Post script
I've actually been curious about ceftriaxone since one placebo controlled study showed it resolving cognitive fatigue in post treatment lyme patients. But I assumed it had been due to the anti glutamate effects it has, not the antibiotic effect, as almost no antibiotic long term studies have been shown to be vhelpful in post treatment lyme disease syndrome or cfs

 

[frozenborderline]

Rough example of conversation. A is me. J is the guy who is convinced lyme is the cause of everything


J:
The main thing I’ve noticed with people that have Lyme vs CFS is that it only gets worse if you move whereas Lyme it’s progressive

A:
Its interesting idea , mine has been progressive but slower than yours

Who knows. Maybe you've cracked the case

J
I’ve just never seen a CFS case with bilateral Bell’s palsy which is why I kept pushing for Lyme

A:
I was approved for ivig

J:
And it worked at least for me

A:
I dont have bella palsy tho

The only similarity we have is disability and the progressive part and that it started with lyme

J:
I never treated it in the beginning

A
But you know, people with Als, and mitochondria diseases get worse too, progressively

For some its genetic

Not sure it's always infectious

It is weird when u find a disease that does respond to treatments but seems to eat them up and go back to being worse and 3worse even after the treatments help for a timeb

J
I think for Lyme it just takes time, like 6-7 months if you’ve had it for a long time

A:
On my time scale that looks like a long slow average decline with lots of bumps, big ones, enough to not notice it, like a frog being boiled in water

I see tons of people on the lyme forums who treat for years without success and just get worse but who knows.

I do know that some people have said they've felt it's more of an uphill battle to recover from mold illness now

J
Idk, it worked for me at least

A
It used to be as easy as going to some random house in a desert town

J:
Like some people don’t respond to specific antibiotics

A:
Now the pollution and stuff encroaches further, you need more and more pristine isolated areas


J:
There was this blog by Dr Jaller (Lyme doctor) who had this patient who deteriorated on orals alone yet rocephin saved her

It’s weird

 

[Spanky88]

I know I treated Lyme for years with various antibiotics. Early into my illness I had some reduction in pain levels from high dose IV antibiotics. But aside from that I kept believing more and more treatment was the key as I didn't want to believe I had cfs.

Finally I had to give up on it. And yes much of the Lyme crowd thinks everything is lyme disease. I think it's true for a small minority that have Lyme in a chronic manner. It can become very cult like. I had to leave the community on Facebook as it was very toxic. I even got blamed for lack of progress by people in the lyme community and I saw lots of awful behavior.

It's like a religion to some. It's all they talk about and almost any symptom of any chronic illness can be explained by it or a herx reaction from antibiotics.

This is just my opinion and I am not claiming there are not people debilitated by Lyme.

BTW I always noticed courses of antibiotics seem to help for a little while and then stop. I think they have some anti-inflammatory action.

 

[frozenborderline]

@Hip any thoughts ?

 

[frozenborderline]

Well here's some solid science about disease progression and stages
https://internal-journal.frontiersin.org/articles/10.3389/fneur.2020.00826/full

 

[frozenborderline]

 

[Hip]

If I had Lyme, I'd look at doing home mild HBOT daily for a year, as I've heard some Lyme patients have responded to that. Unfortunately the equipment is expensive.

Then there is the drug disulfiram, which is thought to kill Borrelia persisters.

Azlocillin also thought to kill persisters.

Some swear by the Buhner protocol.

 

[Spanky88]

If I had Lyme, I'd look at doing home mild HBOT daily for a year, as I've heard some Lyme patients have responded to that. Unfortunately the equipment is expensive.

Then there is the drug disulfiram, which is thought to kill Borrelia persisters.

Azlocillin also thought to kill persisters.

Some swear by the Buhner protocol.

I never tried HBOT but I followed the Buhner protocol. I didn't see much in terms of results but I might have been misdiagnosed with lyme anyway.

 

[Martin aka paused||M.E.]

I think this is the problem: misdiagnosis. We don't have a reliable diagnostic test apart from clinical appearance when you see a rash or not, ce the tick etc. And even then you don't necessarily have lyme.

Disulfiram leads to higher levels of dopamine by blocking dopamine-β-hydroxylase. I assume that the effect of Abilify in ME is based on the dopamine boost bc I have heard others reporting success on other dopamine agonists.

So I think many with ME could possibly get better on Disulfiram (though I don't want to take it), while others might really have a persistent lyme infection that is resistant to most antibiotics.

As hip has mentioned, researchers recently found that Azlocillin is helpful here and it doesn't need long term abx.

I'm also diagnosed with CLD (based on serum tests) and very sure've never had a it.

People in the CLD community seem to be obsessed with the idea of long term abx treatment, while studies show us that it doesn't make them better.

 

[crypt0cu1t]

There is nothing that irritates me more than someone preaching to me about how my illness is "classic neuro lyme" even though I've trialed antibiotics for over 6 months, tested negative with Quest and Igenex multiple times AND never had a tick bite that I can remember.

I feel like most people who do "improve" on abx are either experiencing an anti inflammatory effect from them or had some other bacterial infection that may have been cleared up.

*Edit* I'm not saying chronic lyme doesn't exist, but I'm saying I think it's over diagnosed.

Antibiotics can be harmful long term and I think Treatments should be individualized; Plasmapheresis and high dose IVIG are the only things that have worked for me so far.

 

[frozenborderline]

think this is the problem: misdiagnosis. We don't have a reliable diagnostic test apart from clinical appearance when you see a rash or not, ce the tick etc. And even then you don't necessarily have lyme.

I trust the normal CDC tests and had a fairly classic case at the beginning, with rash and fever and such. I just have not that much reason to think it lingered after antibiotics other than the simplistic idea that if the symptoms stayed it must mean the disease is still there. I think it messed up my immune system, I also had documented continued viral infections and mold reactionsafter, though the lyme struck the initial blow

 

[frozenborderline]

I'm also diagnosed with CLD (based on serum tests) and very sure've never had a it.

Was it based on igenex ? I know for a fact their tests are bunk

 

[Martin aka paused||M.E.]

I trust the normal CDC tests and had a fairly classic case at the beginning, with rash and fever and such. I just have not that much reason to think it lingered after antibiotics other than the simplistic idea that if the symptoms stayed it must mean the disease is still there. I think it messed up my immune system, I also had documented continued viral infections and mold reactionsafter, though the lyme struck the initial blow

Around 20% don't react to abx or let's be more precise: abx don't kill borrelia in around 20% which causes ongoing symptoms. It's possible that it also messed up your system or triggered another disease.

 

[Martin aka paused||M.E.]

Was it based on igenex ? I know for a fact their tests are bunk

I don't even know Igenex... I do d multiple ELISA+Western Blots and did the qPCR for phages at RED labs

 

[frozenborderline]

Around 20% don't react to abx or let's be more precise: abx don't kill borrelia in around 20% which causes ongoing symptoms. It's possible that it also messed up your system or triggered another disease.

No, about 20% have post treatment lyme disease syndrome, 3which is not considered to be caused by persistent bacteria. It's possible it is, but seems unlikely 5o me.

 

[Martin aka paused||M.E.]

No, about 20% have post treatment lyme disease syndrome, 3which is not considered to be caused by persistent bacteria. It's possible it is, but seems unlikely 5o me.

I thought so too. But I recently had a discussion and searched for evidence and changed my mind.
Take this as an example
https://res.mdpi.com/d_attachment/a...00183/article_deploy/antibiotics-08-00183.pdf

 

[frozenborderline]

I thought so too. But I recently had a discussion and searched for evidence and changed my mind.
Take this as an example
https://res.mdpi.com/d_attachment/a...00183/article_deploy/antibiotics-08-00183.pdf

Its an impressive study and fairly interesting, and ill have to read it more. But it's still a single study.

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.

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. Also , I'm wondering how this relates to the overall microbiome , inside and outside a the body

 

[frozenborderline]

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

 

[Martin aka paused||M.E.]

Its an impressive study and fairly interesting, and ill have to read it more. But it's still a single study.

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.

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. Also , I'm wondering how this relates to the overall microbiome , inside and outside a the body

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