I may have Lyme, need advice!

[Martin aka paused||M.E.]

Ah, sarcasm. It's not necessary. Also, I'm no doctor. I'm not in the life-saving business.

I do like to think of myself as a sort of TBD history buff - and if you want to appreciate where Lyme is today, you'd at least consider embracing its history.

That was no sarcasm.
Yes, what I can imagine is that it triggers fibromyalgia. If you catch b.b. and get arthritis abx wouldn't help either.
But I will look for those studies by these authors you mentioned.

 

[duncan]

If you catch b.b. and get arthritis abx wouldn't help either.

CDC says if you get Lyme arthritis and treat it early, you treat it precisely with abx. Then again, I'm no CDC fan....

 

[Martin aka paused||M.E.]

CDC says if you get Lyme arthritis and treat it early, you treat it precisely with abx. Then again, I'm no CDC fan....

Ok that doesn't make any sense to me either... That's like saying if you get streps and then psoriasis you can treat both in the early stage with abx...

 

[duncan]

Ok that doesn't make any sense to me either... That's like saying if you get streps and then psoriasis you can treat both in the early stage with abx...

It does get weird fast, I know. But the "arthritis" IS in fact caused by the 'schetes, at least early on. Kill the Bb, pain and swelling should subside; that's the underpinning logic. I think this is indeed how it works in most cases presenting this way in early Lyme, certainly with kids (remember, Lyme started in a town with a cluster of kids with what some thought was juvenile rheumatoid arthritis).

But after a while, it changes. CDC and IDSA say once the arthritis reaches a certain stage, eh, it cannot be Bb anymore, so try different approaches. This is the windmill that the early EIS agent has been chasing since the late 70;s/early 80's. What's causing symptoms is anything but persisting Lyme. Could be molecular mimicry. Could be an autoimmune disorder or some other immune dysfunction. But it's not Lyme.

Maybe, maybe not.

 

[Martin aka paused||M.E.]

Spirochetes was the keyword...
I find this one convincing.
It's quite new and it shows in fact that b.b. can persist in the spirochetal BUT also in the biofilm abx-resistant form. The study also shows inflammatory signs and scars in the tissues and brain.
What leads me to the question why tf medicine (I read a book from 2018) declines the existence of resistance (nice play on words)

https://res.mdpi.com/d_attachment/a...00183/article_deploy/antibiotics-08-00183.pdf

 

[Martin aka paused||M.E.]

What stays is the problem with the tests... @Wanja can you remember a tick bite or a rash? Bc I can't but have positive (and negative) test results (not only for one strain)...

 

[duncan]

Spirochetes was the keyword...
I find this one convincing.
It's quite new and it shows in fact that b.b. can persist in the spirochetal BUT also in the biofilm abx-resistant form. The study also shows inflammatory signs and scars in the tissues and brain.
What leads me to the question why tf medicine (I read a book from 2018) declines the existence of resistance (nice play on words)

An autopsy. Sapi is well-known and highly regarded as an academian. Her biofilm work is peerless. Leigner is just a top notch Lyme clinician and all around good guy.

Anyway, why deny what once was accepted and acknowledged? Lots of theories, but only theories. The vaccine grail, which in a way may have got us into our testing quagmire. Legacy concerns. Timing. (It really WAS bad timing. AIDS was blowing up, ME/CFS was taking off, A recession was underway. Who could afford another panic when maybe it was unnecessary since most patients stricken with Lyme seemed to recover?) Diagnostic monies - half a billion dollars annually several years ago. There are potential other reasons but further down the rabbit hole than we need to venture right now.

 

[Martin aka paused||M.E.]

An autopsy. Sapi is well-known and highly regarded as an academian. Her biofilm work is peerless. Leigner is just a top notch Lyme clinician and all around good guy.

Anyway, why deny what once was accepted and acknowledged? Lots of theories, but only theories. The vaccine grail, which in a way may have got us into our testing quagmire. Legacy concerns. Timing. (It really WAS bad timing. AIDS was blowing up, ME/CFS was taking off, A recession was underway. Who could afford another panic when maybe it was unnecessary since most patients stricken with Lyme seemed to recover?) Diagnostic monies - half a billion dollars annually several years ago. There are potential other reasons but further down the rabbit hole than we need to venture right now.

Wasn’t there a new documentary… red ring or sth... Have to google it when I have enough energy... Seems like I was misled by medical institutions... If that's true what you say than it's a health scandal like ME/CFS... Or perhaps bigger

 

[lenora]

As I recall, the first case diagnosed as Lyme Disease was a young girl whose parents were both doctors. Everything had been tried and it was determined that she had perhaps the first case of Chronic Lyme Disease.

Unfortunately, there was nothing that cured her or even made her more stable. This was at least the late 80's, if not before. I don't know what became of her, she was in a wheelchair at the time, quite young and no, I don't believe there was a cure and the parents (with their contacts) hadn't found it.

If something reversed say autism, wouldn't it make the news and front pages all over the country? After you've been involved in this for a time, you begin to understand that every announcement is not a cure, but we do have to guard against finding everything negative. That's why we have to step aside for a time, regroup and then point out what is often the obvious. That meditation, vibrations and their ilk are definitely not going to cure us, as much as we may want them too. Hard science is what matters....and it's not the drug companies, but results that determine this.

Read both sides of the argument...don't be followers but thinkers. It's too important. Yours, Lenora.

 

[hapl808]

I've gone down the road of lyme as my initial symptoms looked a lot like that. But the question is whether 'chronic lyme' is persistent issues, residual damage, or something else entirely.

I've said this many times before, but until testing is better than a divining rod (actually I don't know - maybe those are good - too tired to Google), we can't figure out anything. If you go to enough LLMD, they will assuredly diagnose anyone with ME/CFS with lyme.

So the question is whether ME/CFS is lyme, or lyme is ME/CFS, or these are common comorbidities, or these are all one unified autoimmune illness, or whatever.

I've seen that with people like us who suffer for years and then a doctor shows them a bunch of fancy words and tests and tells them, "You have lyme!" and it's a huge weight off their back as all their suffering is validated.

Yet the people who swear by lyme often go through brutal treatments and don't seem to improve as much as I'd hope. I know some relatively financially well off people who have seen the best lyme specialists. Beyond herbs, all kinds of specialized treatments, long courses of IV antibiotics, and every other treatment. There's always an excuse - persisters, spirochetes, biofilms, etc. I've tried a lot of the lyme treatments that seemed less risky (doxy, zithro, Buhner, Zhang, etc) and gained some modest benefits. Is that because I had (have) lyme, or who knows. Doxy can affect collagen synthesis, despite what mainstream docs will tell you, and most drugs and herbs have many effects.

We can all agree that mainstream medicine has ignored us. But that does NOT mean that anyone who pays attention to us and tells us our suffering is real actually has the answer.

That's the danger in this world. Your enemy's enemy is not necessarily your friend.

Hope that makes sense.

 

[duncan]

I've seen that with people like us who suffer for years and then a doctor shows them a bunch of fancy words and tests and tells them, "You have lyme!" and it's a huge weight off their back as all their suffering is validated.

Well, it's not like that as frequently as you might think in Lyme world. In fact, it's often just the opposite.

Yet the people who swear by lyme often go through brutal treatments and don't seem to improve as much as I'd hope. I know some relatively financially well off people who have seen the best lyme specialists. Beyond herbs, all kinds of treatments, long courses of IV antibiotics, and every other treatment. There's always an excuse - persisters, spirochetes, biofilms, etc. I've tried a lot of the lyme treatments that seemed less risky (doxy, zithro, Buhner, Zhang, etc) and gained some modest benefits. Is that because I had (have) lyme, or who knows. Doxy can affect collagen synthesis, despite what mainstream docs will tell you, and most drugs and herbs have many effects.

Yep, although I would not use the word "excuse". We don't know what's going on. Like we all know, the tests suck, even though there are ways to use them to at least get a little bit higher confidence in a Lyme diagnosis - or denial of one.

So the question is whether ME/CFS is lyme, or lyme is ME/CFS, or these are common comorbidities, or these are all one unified autoimmune illness, or whatever.

Well, these are a couple of the choices. There are others. But Lyme clearly is NOT ME/CFS. Anyone who diagnoses an active case of Lyme as ME/CFS has obviously gotten it wrong. Easy to do with such a bad diagnostic repertoire.

I've gone down the road of lyme as my initial symptoms looked a lot like that. But the question is whether 'chronic lyme' is persistent issues, residual damage, or something else entirely.

No, it's really not. Extract the politics from the narrative, and the real question is whether someone has Late Stage Lyme. Lyme has stages, just like syphilis. Chronic Lyme was accepted by everyone - everyone, as far as I know - until around 1990 or just before. And it's not like the science changed. The question is what did.

I've said this many times before, but until testing is better than a divining rod (actually I don't know - maybe those are good - too tired to Google), we can't figure out anything. If you go to enough LLMD, they will assuredly diagnose anyone with ME/CFS with lyme.

Not where I got diagnosed. and I was in a Lyme epicenter. I meet the CDC 2-tier criteria and all the Lyme doctors I know bounce their ideas off that as the base metric. I understand it's a clinical diagnosis, but in the US, the push back against a TBD diagnosis of any kind - and there are several - is a very dangerous thing for a clinician to do.

 

[hapl808]

I meet the CDC 2-tier criteria and all the Lyme doctors I know bounce their ideas off that as the base metric.

Well, if your ELISA and Western Blot came back positive (or at least your Western Blot), that's a pretty easy diagnosis? I wasn't tested for the first few years of struggling with symptoms (started in SE Asia), and while I was tested later, I was told by various LLMD that if you don't get tested within a short period, then the normal tests are useless. Hence the rise of the alternate testing industry like Igenex and such.

Still not sure if SE Asia would have lyme - or possibly similar pathogens. In retrospect, I had all the symptoms but did not know it at the time. It wasn't until years later that I received various antibiotics, etc.

Anyone who diagnoses an active case of Lyme as ME/CFS has obviously gotten it wrong. Easy to do with such a bad diagnostic repertoire.

My issue is you can't say it's obviously wrong with such bad diagnostics. It's BECAUSE the diagnostics are so bad that no part of it is obvious? Neither ME/CFS nor chronic lyme has a definitive diagnostic tool, otherwise there wouldn't be people attempting to develop one.

 

[duncan]

Still not sure if SE Asia would have lyme - or possibly similar pathogens. In retrospect, I had all the symptoms but did not know it at the time. It wasn't until years later that I received various antibiotics, etc.

There are Borrelial variations in almost every country. Compound that with other tick-borne diseases that can vary by tick species.

My issue is you can't say it's obviously wrong with such bad diagnostics. It's BECAUSE the diagnostics are so bad that no part of it is obvious? Neither ME/CFS nor chronic lyme has a definitive diagnostic tool, otherwise there wouldn't be people attempting to develop one.

Agreed. My point is, however, that Lyme cannot be ME/CFS. It can be misdiagnosed as such, but Lyme is only caused by Bb. Crappy argument on my part at least in the sense that there are so many Borrelia infections that are not Bb sensu lato or a derivative, and I fear some government or insurance agencies try to capitalize on that. STARI is a case in point in the US Midwest. As is Australia.

 

[duncan]

Well, if your ELISA and Western Blot came back positive (or at least your Western Blot), that's a pretty easy diagnosis? .

Not necessarily. Heard of PTLDS? O the theory that some people, once they test positive, may always test positive - even with no Lyme present? I subscribe to neither BTW.

I was told by various LLMD that if you don't get tested within a short period, then the normal tests are useless. Hence the rise of the alternate testing industry like Igenex and such.

So, don't test for first 30 days, right? It's too soon for our immune systems to reliably mount a defense before then, supposedly. Then, it shouldn't matter that much except the accuracy of the 2T is purportedly higher the longer you have Lyme. BTW, Igenix isn't really that alternative. It just sets the bar at a different level, while also testing at least two strains vs just the conventional B31 strain most everyone else tests against - which might not do you much good if you're a strain from Asia.

 

[hapl808]

My point is, however, that Lyme cannot be ME/CFS. It can be misdiagnosed as such, but Lyme is only caused by Bb.

I guess that's true in one direction, but not necessarily vice versa. Could lyme trigger ME/CFS? Why not, since we don't know what ME/CFS is or what triggers it or why some people recover and some don't and so forth. So maybe lyme is one of the many things that can eventually lead to ME/CFS. That's actually what I think happened in my case, but the question is whether there is an active infection to still treat, dysregulation of the immune system, etc.

 

[hapl808]

And of course the question of if I were treated immediately if I could have avoided the next 20 years of misery isn't a helpful one. I saw an ID specialist immediately upon returning from SE Asia but they just kept running tests until I ran out of money. So the question is what can be done now.

 

[duncan]

I guess that's true in one direction, but not necessarily vice versa. Could lyme trigger ME/CFS? Why not, since we don't know what ME/CFS is or what triggers it or why some people recover and some don't and so forth. So maybe lyme is one of the many things that can eventually lead to ME/CFS. That's actually what I think happened in my case, but the question is whether there is an active infection to still treat, dysregulation of the immune system, etc.

In my opinion, yes. In fact, deep in Lyme world, it is proposed Lyme breaks the immune system.

 

[duncan]

And of course the question of if I were treated immediately if I could have avoided the next 20 years of misery isn't a helpful one. I saw an ID specialist immediately upon returning from SE Asia but they just kept running tests until I ran out of money. So the question is what can be done now.

Yes. Sadly, agreed.

 

[JES]

I guess that's true in one direction, but not necessarily vice versa. Could lyme trigger ME/CFS? Why not, since we don't know what ME/CFS is or what triggers it or why some people recover and some don't and so forth. So maybe lyme is one of the many things that can eventually lead to ME/CFS. That's actually what I think happened in my case, but the question is whether there is an active infection to still treat, dysregulation of the immune system, etc.

This is one problematic, another possibility is that ME/CFS is misdiagnosed as Lyme. I came up with at least one such scenario:

In a country for example where I live, ticks are common, so you will probably find a few percentage or even more of the general population would be positive if you tested everyone at a given time. Not all of those people are sick. Just like with COVID or any other pathogen, some people are completely asymptomatic and still test positive.

Let's say one of these persons who produces some kind of antibodies against Lyme later gets struck by a virus and develops ME/CFS. Now when they go to a Lyme clinic, the doctor runs one of the various Lyme tests and it shows the patient is Lyme positive. The patient may then get a Lyme diagnosis even if it was most likely the viral infection that started all symptoms.

This is actually what happened to me recently when I had a remote consultation with a German Lyme clinic. They looked at the results and said yep, no doubt you have Lyme, let's start to treat it. No questions asked and seemingly unaware a condition like ME/CFS existed.

 

[duncan]

This is one problematic, another possibility is that ME/CFS is misdiagnosed as Lyme. I came up with at least one such scenario:

Sure. A person could also have both ME/CFS and Lyme at the same time. Or more diseases or parasites or cancers or fungus or whatever. I've been diagnosed with ME/CFS independent of Lyme, and Lyme, and bartonella and babesiosis and POTS and other stuff. I have no doubt any other disease could be added to that array.