I may have Lyme, need advice!

[Wanja]

Hey friends!

so my autoimmune-encephalitis panel came back negative.

I am going to get checked for Lyme next week as the symptomps of heavy chronic neuro lyme pretty much describes my situation.

https://forums.phoenixrising.me/threads/i-dont-think-i-have-cfs-anymore.84255/

i find this whole chronic infection thing rather confusing and i am not really sure what are the tests to take and treatments recommended and if they are reliable.

I would like to try some naturals first and then meds to treat my possible chronic lyme infection.

can you recommend supplements, meds, treatments, protocols which are know to help, things to keep in mind and the most effective tests?

Many of you are much more experienced than me and i dont have the power for that much research lately...

 

[Martin aka paused||M.E.]

Hey friends!

so my autoimmune-encephalitis panel came back negative.

I am going to get checked for Lyme next week as the symptomps of heavy chronic neuro lyme pretty much describes my situation.

https://forums.phoenixrising.me/threads/i-dont-think-i-have-cfs-anymore.84255/

i find this whole chronic infection thing rather confusing and i am not really sure what are the tests to take and treatments recommended and if they are reliable.

I would like to try some naturals first and then meds to treat my possible chronic lyme infection.

can you recommend supplements, protocols which are know to help, things to keep in mind and the most effective tests?

Many of you are much more experienced than me and i dont have the power for that much research lately...

The problem with chronic lyme is that there are no reliable tests.

It all starts with the question, what the term “chronic lyme disease” means at all as there is no widespread consensus… but Lyme can lead to other diseases

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC4477530/

Then the tests. Some use serum/liquor pair, some LTT, some ELISA+Western Blot.. Some other markers like sCD14, low NK57+ cells... there is no gold standard

The thing is that the science seems to tend that ppl who are diagnosed with “chronic Lyme disease” in fact have other diseases and are misdiagnosed and that there is no such thing like Chronic Lyme Disease at all... There was an article in the Ärzteblatt

https://www.aerztezeitung.de/Medizin/Chronische-Neuroborreliose-ist-ein-Hirngespinst-230960.html

You can also Look at the recommendations by the RKI

https://www.rki.de/DE/Content/Infek...76F5BF093DF4.internet082#doc2398672bodyText10

(Btw: the sources are in German bc he is German I thought and it could make readings easier for him).

You can also Check Wikipedia

https://en.m.wikipedia.org/wiki/Chronic_Lyme_disease

From my own personal experience: I’ve been diagnosed with CLD by the well known Professor Kenney DeMeierler. He is a self declared expert in the field of CLD and ME. His antibiotics plus IVIG didn’t do anything besides my car has a new owner now. I have completely contradictory test results. Not even the same strain (sometimes it’s b.burgdorferii, then another, now it’s relapsing fever which I have never had)…

Because of this confusion I read a whole medical book about Lyme disease. There is no evidence to support chronic Lyme disease. Physicians give you antibiotics based on clinical appearance or neuroborrelia (serum/liquor-pair plus inflammatory markers). But it's not a chronic condition - regarding the research.

My last try is now the LTT at IMD Berlin. If that result is also contradictory then I will throw that whole topic in the garbage can. After all I have read I really doubt that there is sth like Chronic Lyme Disease.
What doesn’t mean that you’re seriously ill!

 

[crypt0cu1t]

My AE panel came back negative too. There are tons of undiscovered antibodies.

 

[JES]

Regarding treatments, there are popular herbal protocols like Buhner and Cowden, it's quite easy to get access to them and there are books written about those.

The upside with herbal treatments is that they are unlikely to cause much harm, at least in my experience. The downside is that most of those herbs have only been demonstrated to work in vitro and there is little evidence of what exactly they do inside the human body. Another downside is that those protocols will lighten your wallet, especially the Cowden one.

With antibiotics I reckon you have a slightly more powerful treatment, but also a treatment that is capable of causing more harm to your microbiome. Neither are evidence-based for chronic Lyme, so it's pretty much a toss-up in my book. I'd probably go for herbs first if you had to pick either.

 

[geraldt52]

...antibiotics plus IVIG didn’t do anything besides my car has a new owner now...

It isn't really funny, but I had to LOL over that quote!

I can honestly say that in 35 years every single one of the scores and scores of "treatments" I've tried could be summed up by some version of your quote, and besides the wasted money there's the side effects and wasted hours associated with every black hole.

I truly believe that the people who are managing the best have "treated" the least, as hard as that might be to accept. I haven't "treated" with anything for more than 10 years, and I'm a bit better for it, not worse. The only thing that has made any consistent difference is carefully watching what I eat, and that seems to just keep me going, not "fix" anything.

 

[Wanja]

It isn't really funny, but I had to LOL over that quote!

I can honestly say that in 35 years every single one of the scores and scores of "treatments" I've tried could be summed up by some version of your quote, and besides the wasted money there's the side effects and wasted hours associated with every black hole.

I truly believe that the people who are managing the best have "treated" the least, as hard as that might be to accept. I haven't "treated" with anything for more than 10 years, and I'm a bit better for it, not worse. The only thing that has made any consistent difference is carefully watching what I eat, and that seems to just keep me going, not "fix" anything.

on the otherside i read success storys about people treating their "Chronic Lyme" on Facebook etc. Some people getting better after month of Antibiotics...

i just cant believe that my extreme neurological issues are caused by "plain" CFS. I can feel that there is something else going on. The Doctors i saw are really perplexed about my crazy CFS Symptoms... and i didnt have any PEM for years now, chronic fatigue 'yes', felt bad after nights outs and heavy activitys 'yes', but i did weightlifting etc and was "fine" most of the time.

 

[Wanja]

My AE panel came back negative too. There are tons of undiscovered antibodies.

yeah my plan is to get checked for all the other panels as well... which ones should i test for? which CAN i test for? Mayo Panel, Stanford? what else is there?

 

[Wanja]

The problem with chronic lyme is that there are no reliable tests.

It all starts with the question, what the term “chronic lyme disease” means at all as there is no widespread consensus… but Lyme can lead to other diseases

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC4477530/

Then the tests. Some use serum/liquor pair, some LTT, some ELISA+Western Blot.. Some other markers like sCD14, low NK57+ cells... there is no gold standard

The thing is that the science seems to tend that ppl who are diagnosed with “chronic Lyme disease” in fact have other diseases and are misdiagnosed and that there is no such thing like Chronic Lyme Disease at all... There was an article in the Ärzteblatt

https://www.aerztezeitung.de/Medizin/Chronische-Neuroborreliose-ist-ein-Hirngespinst-230960.html

You can also Look at the recommendations by the RKI

https://www.rki.de/DE/Content/Infek...76F5BF093DF4.internet082#doc2398672bodyText10

(Btw: the sources are in German bc he is German I thought and it could make readings easier for him).

You can also Check Wikipedia

https://en.m.wikipedia.org/wiki/Chronic_Lyme_disease

From my own personal experience: I’ve been diagnosed with CLD by the well known Professor Kenney DeMeierler. He is a self declared expert in the field of CLD and ME. His antibiotics plus IVIG didn’t do anything besides my car has a new owner now. I have completely contradictory test results. Not even the same strain (sometimes it’s b.burgdorferii, then another, now it’s relapsing fever which I have never had)…

Because of this confusion I read a whole medical book about Lyme disease. There is no evidence to support chronic Lyme disease. Physicians give you antibiotics based on clinical appearance or neuroborrelia (serum/liquor-pair plus inflammatory markers). But it's not a chronic condition - regarding the research.

My last try is now the LTT at IMD Berlin. If that result is also contradictory then I will throw that whole topic in the garbage can. After all I have read I really doubt that there is sth like Chronic Lyme Disease.
What doesn’t mean that you’re seriously ill!

yeah its quite interesting... thats probably the reason i didn't look into it further after i got a standard Lyme test which was negativ 5 years ago... i thought its somehow all bogus and somehow connected to CFS or MCAS because the facts always felt to squishy. No i am wondering if i was maybe wrong...

i am at a doctor for chronic infection in Kleinmachnow next week. Its a Lab called DEDIMED. he seemed pretty competent. costs a lot. but i really want to check this stuff.
Also Doctor Pfeiffer in Ärztehaus Mitte in Berlin is checking some special "CFS" parameters atm, i dont know what, but everybody's going to see this guy so i thought i might should as well.

 

[Martin aka paused||M.E.]

yeah its quite interesting... thats probably the reason i didn't look into it further after i got a standard Lyme test which was negativ 5 years ago... i thought its somehow all bogus and somehow connected to CFS or MCAS because the facts always felt to squishy. No i am wondering if i was maybe wrong...

i am at a doctor for chronic infection in Kleinmachnow next week. Its a Lab called DEDIMED. he seemed pretty competent. costs a lot. but i really want to check this stuff.
Also Doctor Pfeiffer in Ärztehaus Mitte in Berlin is checking some special "CFS" parameters atm, i dont know what, but everybody's going to see this guy so i thought i might should as well.

I saw Dr. Pfeiffer in 2017. Before he was part of the CFS Sprechstunde in the Charité (well, that's what he said). He said: “I've never seen real CFS or maybe at least one time. When there is a virus, then it's the virus”. Then he talked four hours about fish oils and vitamin D. The tests he has done didn't offer any insights. I don't know what to think of him. Maybe he had a bad day?

 

[Martin aka paused||M.E.]

i just cant believe that my extreme neurological issues are caused by "plain" CFS. I can feel that there is something else going on. The Doctors i saw are really perplexed about my crazy CFS Symptoms... and i didnt have any PEM for years now, chronic fatigue 'yes', felt bad after nights outs and heavy activitys 'yes', but i did weightlifting etc and was "fine" most of the time.

That's how I was from 2013-summer of 2017

 

[hapl808]

I've had the same issues that @Martin aka paused||M.E. describes, and my initial symptoms seemed very like Lyme but were not caught at the time. However, there's a ton of disagreement on accurate testing, treatment, etc. If a test is negative, it doesn't mean anything. If it's positive and you treat it and it's negative, it still doesn't mean anything.

So with testing, I like to ask if it's worth the damage - will it give actionable information in real diagnostic or treatment terms? When you're more severe, any test (including blood draw) can cause a bit of a crash, or a serious crash, so I feel caution is warranted. Also, since we're desperate it's easy to get drawn a convincing path by a competent doctor - who I truly think believes what they're saying.

My recommendation is try some of the various herbal protocols. We don't know all the contents and benefits in herbs and as someone mentioned, they are unlikely to do harm. Do Buhner or something for a month or two and re-evaluate. If you're improving by then, continue. If after 1-2 months (after the initial healing reactions) you're no better, then stop and look elsewhere.

I think expensive testing and fringe antibiotic treatments are of limited benefit and potential harm. That said, I have benefited from oral antibiotics in the past, but they always stopped working at a certain point. Maybe this is biofilms, or the need for 18 months of IV antibiotics, or the various extreme treatments, but I haven't talked to enough people who chose that path and didn't just end up somewhat suffering.

 

[crypt0cu1t]

yeah my plan is to get checked for all the other panels as well... which ones should i test for? which CAN i test for? Mayo Panel, Stanford? what else is there?

So, sometimes you never will show an antibody to AE and you'll be labeled as seronegative. You've got to look at other supportive evidence (EEG, MRI, PET Scan, CSF abnormalities)

I don't have any definitive AE antibodies, but I do have these;

Hypometabolism on PET, Slowing on EEG, High protein in CSF, high ESR/CRP, AChR Ganglionic a3 antibodies (which CAN cause AE in rare cases but it isn't definitive)

 

[Judee]

I truly believe that the people who are managing the best have "treated" the least, as hard as that might be to accept. I haven't "treated" with anything for more than 10 years, and I'm a bit better for it, not worse. The only thing that has made any consistent difference is carefully watching what I eat, and that seems to just keep me going, not "fix" anything.

I've done it both ways as well--gone many months, even years w/o taking anything and then also tried to treat.

I do think we tend to throw too much at the problem sometimes especially when we've managed to reach some sort of even plain, it's like we just can't help ourselves and gotta throw something else into the mix which usually bungles the progress we were making.

However, I will say some things do give me a little bump up of temporary improvement so now I'm back to trying things again because either way, I have been going downhill and don't cherish the prospect of being bedbound and trying to take of myself that way.

 

[Wanja]

I've had the same issues that @Martin aka paused||M.E. describes, and my initial symptoms seemed very like Lyme but were not caught at the time. However, there's a ton of disagreement on accurate testing, treatment, etc. If a test is negative, it doesn't mean anything. If it's positive and you treat it and it's negative, it still doesn't mean anything.

So with testing, I like to ask if it's worth the damage - will it give actionable information in real diagnostic or treatment terms? When you're more severe, any test (including blood draw) can cause a bit of a crash, or a serious crash, so I feel caution is warranted. Also, since we're desperate it's easy to get drawn a convincing path by a competent doctor - who I truly think believes what they're saying.

My recommendation is try some of the various herbal protocols. We don't know all the contents and benefits in herbs and as someone mentioned, they are unlikely to do harm. Do Buhner or something for a month or two and re-evaluate. If you're improving by then, continue. If after 1-2 months (after the initial healing reactions) you're no better, then stop and look elsewhere.

I think expensive testing and fringe antibiotic treatments are of limited benefit and potential harm. That said, I have benefited from oral antibiotics in the past, but they always stopped working at a certain point. Maybe this is biofilms, or the need for 18 months of IV antibiotics, or the various extreme treatments, but I haven't talked to enough people who chose that path and didn't just end up somewhat suffering.

Could Chronic Lyme actually be just CFS?

 

[Martin aka paused||M.E.]

Could Chronic Lyme actually be just CFS?

Have you read the links? There it says that it's often in reality fibromyalgia or ME

 

[Wanja]

Have you read the links? There it says that it's often in reality fibromyalgia or ME

yeah just read them! Hm... the thing is 90% of the Medical Community doesn't believe in ME/CFS either. So i am a little traumatized listening to the "established" scientific opinion. There is so many people suffering from these horrific neurologic symptoms similar to mine who don't have PEM for example (or maybe they havee and dont realize). its hard to say, some people got treated with antibiotics or herbs and recovered...

 

[Martin aka paused||M.E.]

yeah just read them! Hm... the thing is 90% of the Medical Community doesn't believe in ME/CFS either. So i am a little traumatized listening to the "established" scientific opinion. There is so many people suffering from these horrific neurologic symptoms similar to mine who don't have PEM for example (or maybe they havee and dont realize). its hard to say, some people got treated with antibiotics or herbs and recovered...

I'm not talking about docs but science. We have a lot of scientific proof that ME exists, doesn't matter what doctor average Joe thinks. That's a difference.
I'm very careful with recovery stories. Some recovered using DNRS, Gupta and related things. And as I said: I've investigated that route myself. And it didn't lead to anywhere but contradictory results. So if I were you and get a positive test I would repeat it.
Lyme id very real and very easy to treat. Chronic Lyme... Questionable.

 

[duncan]

Lyme id very real and very easy to treat. Chronic Lyme... Questionable.

Well, let's be accurate. Lyme can be very easy to treat. Can be - if caught early enough, and if you aren't unlucky enough to be among the 10% to 20% who are not easily cured.

As for "chronic Lyme" it's been politicized for decades now. Best stick with Late Stage Lyme - even though many early and current Lyme research pioneers regularly referred to "chronic Lyme." Why? Because it can be persistent, and we've known that since the early 80's. Hell, the original EIS investigator who came to Lyme to find the cause of the mysterious disease there reportedly was convinced it was viral because antibiotics failed so miserably in too many cases.

Late Stage Lyme has the same connotation among many Lyme doctors as Late Stage Syphilis, and for good reason, they are both tissue-tropic, they are both notoriously difficult to eradicate once they've set up shop in privileged sites like the brain, and they are, of course, spirochetes.

As for whether abx will help someone who's had it for a while - imo, no one can with any reasonable certainty say. There are reports on either side of that.

 

[Martin aka paused||M.E.]

Well, let's be accurate. Lyme can be very easy to treat. Can be - if caught early enough, and if you aren't unlucky enough to be among the 10% to 20% who are not easily cured.

As for "chronic Lyme" it's been politicized for decades now. Best stick with Late Stage Lyme - even though many early and current Lyme research pioneers regularly referred to "chronic Lyme." Why? Because it can be persistent, and we've known that since the early 80's. Hell, the original EIS investigator who came to Lyme to find the cause of the mysterious disease there reportedly was convinced it was viral because antibiotics failed so miserably in too many cases.

Late Stage Lyme has the same connotation among many Lyme doctors as Late Stage Syphilis, and for good reason, they are both tissue-tropic, they are both notoriously difficult to eradicate once they reach priviledged sites like the brain, and they are, of course, spirochetes.

As for whether abx will help someone who's had it for a while - imo, no one can with any reasonable certainty say. There are reports on either side of that.

You are right: let's be accurate! If you catches early it's easy with doxy, if later there are other abx and especially azlocillin. But Late Stage Lyme? Are there tissue studies you could link? I don't ask bc I want to debate on that but bc I have contradictory results myself and as I said I'm still investigating it (LTT).
After all I have read I question the existence of this disease but perhaps you can save my life now by teaching me something different and I got a treatment option!

 

[duncan]

After all I have read I question the existence of this disease but perhaps you can save my life now by teaching me something different and I got a treatment option

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.

Where do these numbers come from? /QUOTE]

From the mid-80's till, well, now. When I say "now", geez, Aucott alludes to them all the time, and he's John Hopkins. Any persister study that has come out in the last 10 years, too - think Zhang (also Hopkins) or Lewis (Northeastern.)

20% is a widely used "failure" number. I've seen revisionist papers suggest as low as 5%, and LLMD numbers suggest much, much higher than only 20%.

Are there tissue studies you could link?

Good question. Lots of animal studies. Check out Monica Embers work from Tulane. And there's Alan Barbour from some California college. Lot's out there. But if you're asking about human tissue studies, only Steeres come readily to mind, and his main focus is persistent sequela in knees.

So, maybe my brain isn't working so well, but when I think of human tissue studies, I think of most animal tissue studies, i.e., post-mortem. Now, there are post-mortem Lyme case studies that look at brains, hearts etc. There are also case studies of live people with Lyme (not brain case studies, but certainly hearts), most famously of Dukes' Specter (sp?). But it's the autopsies that resonate with me, because some - think Vicky Logan, for instance - only died after they stopped abx, and they often stopped because there wasn't enough evidence they were still infected with Bb so they could not get abx. I find these moving, not just that these people couldn't get something that might have cured them, or mitigated their symptoms, but it would seem to me at least, in their case, these treatments helped keep them alive.

After all I have read I question the existence of this disease!

What disease? Late stage Lyme refractory to treatment? It's been all around since 1976 if you're willing to just look at knees. But spirochetes aren't constrained they way our research dollars are, hence so many confirmed myocarditis deaths and neuroborreliosis.