Opinions on de Meirlier

[unicorn7]

As I understood it, there is a cascade of problems in the body in ME: inflammation, lack of oxygen in tissues (hypoxia), metabolic changes, dysbiose in the gut, sometimes autoimmunity, etc etc.
Lyme can be the trigger that started that cascade. There are also other triggers, like Q-fever, EBV and other infections.

I think post-lyme disease is the same as ME. I don't know if there is actually such a thing as chronic lyme disease, where there is still active Borellia after a lot of antibiotics.

I think a lot of people are in that grey area. Some people have an obvious active lyme problem, there is no doubt to give them antibiotics. Some people are pretty obvious to have no lyme, no reaction on LTT or other tests. But there is a big group where it is less clear and you don't want to give everyone in that group long term antibiotics, but you don't want to risk giving no antibiotics to people who would really benefit from it.

I had a very mild reaction to the LTT (2,2,0) and I only got treatment for the gut, but it does say on my papers that it is post-lyme.

 

[duncan]

I believe there are a few PR members here who have diagnoses of both Lyme and ME/CFS. I am one.

The Lyme thing gets complicated very quickly. Science gets muddied. Politics come into play where any outsider would likely think there should be no room for politics. Semantics have a field day.

So, the short answer is, unless you can catch Lyme early on with the bulls-eye rash, and treat it while it is acute and in early stage...presently odds are that the best one can do is check for exposure. Checking for exposure can be done a couple of ways; I prefer a western blot because it gives you up to ten or more markers to estimate your chances (this is basically what the CDC's five-band IgG algorithm does).

I don't like to talk treatment because I am a treatment failure. That could be because I have Lyme that is refractory to abx. It could be that chronic Lyme is actually an autoimmune condition, so throwing abx is pretty much a waste of time, or worse. It could be I don't have either, that I am Lyme-free, and all my problems are related soley to ME/CFS.

So....were it me, I'd want a western blot to see which if any positive bands might surface. That is not to say there is not merit to other Bb diagnostics; it just means I understand the dynamics at play with a WB better.

Edited to add: This post is sadly inadequate. For example, there is a widespread belief within the Lyme community that Lyme can mess with one's immune system, in effect theoretically undermining the ability of metrics such as the WB to accurately assess even exposure, let alone determine status of infection. Regardless, I'd go the WB route.

 

[pibee]

I had a very mild reaction to the LTT (2,2,0) and I only got treatment for the gut, but it does say on my papers that it is post-lyme.

While at the same time I know at least 5 people who are receiving from De Meirleir even triple IV antibiotics ("persisters" protocol) for 'Lyme' with results on Elispot (2,0,0). This is why I skipped De Meirleir, he keeps changing his mind and 2 years ago claimed 95% ME/CFS patients have Lyme. Nobody serious could state such thing based on many 2,0,0 results, even some people were tested 2x until one result wasnt 2, before that was 0 or 1.

My highest Lyme score was (2,8,2), and recently -after 2 years of various antibiotics -(2,5,3). I had Bells palsy, that responded to antibiotics and is almost gone, my face was paralysed, also like botoxed.. some toxin
.
I recently got IV ceftriaxone 20 days, got much better (not even close to remission but much better), when stopped within 5 days HUGE relapse, even speaking difficulties, walking. So now I have to be screened for MS and Myastenia Gravis too as speaking problem could be one of those.

Then I did CellTrend, and surprise, surprise .. got top 1% scores, 8/9 positives, some are even 7x increased.
from Redlabs increased is PGE2, and c4a. Other markers I've measured normal like sCD14, MMP9, VEGF...
VIP is lowered, which fits my very disturbed circadian rhyhtm.

Before CFS (approx feel i had first real fatigue problems when i was 12), I had PANS, bunch of infectious-autoimmune syndromes, that also respond (and even get better) from antibiotics, Hashimoto and now new Sjogren.

All in all I dont know should I believe chronic Lyme exists, regardless of what LTT test says, when I look at my screaming CellTrend numbers.. and the fact i get only worse from antibiotics, at least CFS part.
My mom has mild CFS - very mild, - and we all have Hashimoto, so..with so high numbers I expect I'm one of subgroups with clear autoimmune disease, triggered by Lyme possibly.

 

[Jonathan Edwards]

@Jonathan Edwards I got my results from Kenny de Meirlier and I want to ask your opinion. At the same time, if I have Lymes disease, I need to act.

If you think you might have Lyme disease you should see a mainstream infectious diseases physician, not a fringe therapist like De Meirleir. De Meirleir has nothing to offer that you will not finding a standard university hospital.

 

[Jesse2233]

@pibee you said you had PANS, have you ever done the Cunningham panel?

Also did your PANS respond to abx?

 

[duncan]

De Meirleir has nothing to offer that you will not finding a standard university hospital.

I am not sure how accurate this declaration is. What TBD testing does a standard university hospital employ?The C6 as a screen? A generic ELISA? What treatment options both in terms of dosage and duration? What about abx combinations? How might De Meirleir differ?

Most ID clinicians and by extension, hospitals, embrace standard, prescribed Lyme diagnostic and treatment regimens, and are reluctant to deviate outside those norms. Most of these norms, I believe, are derivatives of - in one way or another - IDSA guidelines, but this will vary depending on the country.

There are both pros and cons to stepping outside the box, but to be clear, in my experience most infectious disease clinicians are only comfortable in the box, and refuse to operate outside of it. There are exceptions.

Either way, first any patient must decide what evidence to embrace, and whether that evidence is substantive enough to support an active Lyme diagnosis.

 

[pibee]

@pibee you said you had PANS, have you ever done the Cunningham panel?

Also did your PANS respond to abx?

No, you're right shouldnt call it PANS. i will do Cunningham panel, was too expensive but now i just have to know. I just assume is "PANS" in lack of a better word, because it is neuropsychiatric,pediatric onset, responds to antibiotics and some immune modulators like vitamin D . Yes, many psychiatric symptoms improved with antibiotics. But not fully.. I had big sleep disorder - from delayed sleep 10 years ago it switched to non-24 hour sleep cycle, it was about 24,5-25 hours, this is real hell. Within 24 hours of IV ceftriaxone (in July) it stopped and since then is much better, still not perfect but i dont cycle anymore.
So it is all very weird.
My biggest improvement was on bactrim - after 1+ year of other antibiotics that did nothing about psyche, then on bactrim I had big herx 3 days huge rages , needed ER I guess , after that I felt much better with CFS, and psyche and my jaw (TMD?) unlocked, it was like small explosion inside, and my face - that was numb for 10 years - become 80% better. This was 1+ year ago, my face is still improved a lot, almost fully. But psychiatric symptoms got a bit back, never as the best days on bactrim.

Even after all this, seeing that raging autoantibodies numbers, I'm very afraid to go the antibiotics route, and absolutely dont trust ILADS [anymore].. :-/

 

[Jesse2233]

Even after all this, seeing that raging autoantibodies numbers, I'm very afraid to go the antibiotics route, and absolutely dont trust ILADS [anymore].. :-/

I hear that. Have you ever tried treating the autoantibodies with autoimmune treatments?

 

[pibee]

If you think you might have Lyme disease you should see a mainstream infectious diseases physician, not a fringe therapist like De Meirleir. De Meirleir has nothing to offer that you will not finding a standard university hospital.

I was treated by mainstream infectious diseases physician, she almost killed me.

 

[pibee]

I hear that. Have you ever tried treating the autoantibodies with autoimmune treatments?

No, I found out CellTrend few days ago. I am in Croatia, it's about 2% chance I can get any autoimmune treatments here.

 

[dadouv47]

If you don't trust KDM, go see a Lyme specialist that follows ILADS guidelines. That's not something you can find in a '' standard university hospital''

 

[Nickster]

No, you're right shouldnt call it PANS. i will do Cunningham panel, was too expensive but now i just have to know. I just assume is "PANS" in lack of a better word, because it is neuropsychiatric,pediatric onset, responds to antibiotics and some immune modulators like vitamin D . Yes, many psychiatric symptoms improved with antibiotics. But not fully.. I had big sleep disorder - from delayed sleep 10 years ago it switched to non-24 hour sleep cycle, it was about 24,5-25 hours, this is real hell. Within 24 hours of IV ceftriaxone (in July) it stopped and since then is much better, still not perfect but i dont cycle anymore.
So it is all very weird.
My biggest improvement was on bactrim - after 1+ year of other antibiotics that did nothing about psyche, then on bactrim I had big herx 3 days huge rages , needed ER I guess , after that I felt much better with CFS, and psyche and my jaw (TMD?) unlocked, it was like small explosion inside, and my face - that was numb for 10 years - become 80% better. This was 1+ year ago, my face is still improved a lot, almost fully. But psychiatric symptoms got a bit back, never as the best days on bactrim.

Even after all this, seeing that raging autoantibodies numbers, I'm very afraid to go the antibiotics route, and absolutely dont trust ILADS [anymore].. :-/

The doctor suspects PANS with my sons due to his symptoms and we ordered the Cunningham Panel to test.
This is a hard road of discovery and treatments.
My son got bad advice from mainstream doctors as well and some that know about this disease.
I hope you can find relief.

 

[justy]

a fringe therapist like De Meirleir

Hi, great to see you back!

I'm wondering if you are able to back up the claim that Professor Dr De Meirleir is a 'fringe therapist'?

As far as I am aware he is a medical Dr trained in cardiology and internal medicine.
He has also, for many years been a teaching Professor at the University of Brussels.

 

[neweimear]

If you think you might have Lyme disease you should see a mainstream infectious diseases physician, not a fringe therapist like De Meirleir. De Meirleir has nothing to offer that you will not finding a standard university hospital.

I did see an infectious disease specialist in a hospital here in Ireland, he found no lyme but low immunity. He did not believe in ME and was very dismissive when I mentioned it.He suggested further tests so then I went to KDM and he uses Armin Labs to test for lymes. As I said I got a weak positive, I am hoping it is false positive. I dont have the budget for his 12 month protocol of herbal treatment. Its not KDM, its the reliability of the Elispot test I am querying. I am not sure about KDM either and his interpretation of the result, suggesting I have lymes for 10 years makes no sense to me.

 

[Binkie4]

If one has had a negative Elisa via uk NHS but it throws up a lot of false negatives, is a western blot at a NHS cost of £300 via my gp worth following since I understand this is not reliable either.

I had two separate tick bites about 10 years ago, no rash or other symptoms and developed ME around then.

Any opinions- gratefully received?

 

[Mel9]

I believe there are a few PR members here who have diagnoses of both Lyme and ME/CFS. I am one.

The Lyme thing gets complicated very quickly. Science gets muddied. Politics come into play where any outsider would likely think there should be no room for politics. Semantics have a field day.

So, the short answer is, unless you can catch Lyme early on with the bulls-eye rash, and treat it while it is acute and in early stage...presently odds are that the best one can do is check for exposure. Checking for exposure can be done a couple of ways; I prefer a western blot because it gives you up to ten or more markers to estimate your chances (this is basically what the CDC's five-band IgG algorithm does).

I don't like to talk treatment because I am a treatment failure. That could be because I have Lyme that is refractory to abx. It could be that chronic Lyme is actually an autoimmune condition, so throwing abx is pretty much a waste of time, or worse. It could be I don't have either, that I am Lyme-free, and all my problems are related soley to ME/CFS.

So....were it me, I'd want a western blot to see which if any positive bands might surface. That is not to say there is not merit to other Bb diagnostics; it just means I understand the dynamics at play with a WB better.

Edited to add: This post is sadly inadequate. For example, there is a widespread belief within the Lyme community that Lyme can mess with one's immune system, in effect theoretically undermining the ability of metrics such as the WB to accurately assess even exposure, let alone determine status of infection. Regardless, I'd go the WB route.

I am another with both Borrelia afzelii infection and ME (based on my severe PEM episodes). I recently moved house and.became so disorganised that I stopped taking two of my antibiotics for a few weeks. The fact that some of my 'Lyme' symptoms returned after a week and my PEM worsened shows that, in my opinion, the Borrelia was still there. It seems to be always ready and waiting for a chance to grow again.

 

[Mel9]

Ok, gosh sounds bad. I wonder can anyone here agree that I could ignore my weak positive lyme diagnosis, I just don't believe it and I do not want to take medications that I may not need.

You could try taking some of his recommended antibiotics short term to see if you respond. If you do not, you probably do not have a Borrelia infection.

 

[duncan]

am another with both Borrelia afzelii infection and ME (based on my severe PEM episodes). I recently moved house and.became so disorganised that I stopped taking two of my antibiotics for a few weeks. The fact that some of my 'Lyme' symptoms returned after a week and my PEM worsened shows that, in my opinion, the Borrelia was still there. It seems to be always ready and waiting for a chance to grow again

I have been diagnosed with neuroborreliosis. My ID specialist wanted me on IV Rocephin for six months at least, but insurance only allowed 30 days. During the infusions, for those 60 minutes, I could feel my brain grow heavy and my balance grow suspect. It felt like injecting silicone directly into my frontal lobe.That decline persists to this day.

Why? Why didn't it work, afterall it's the standard regimen. Well, MAYBE it didn't work because I am IgG subclass 1 deficient. That means my body, which has responsibility for mop up duty, ie, killing the spirochetal remnants left behind by barrage after barrage of doxy or mino or Rociphen, can be incapable of eradicating those remnants. Lyme does that. It pulls the rug out from underneath your immune system, and you end up sprawled on the floor wondering how anyone could be so sick. The abx knock down the Lyme, but your own body gives it solace and a respite, so it can recover and redouble its efforts, and you just get sicker. Whoever is concerned about Lyme, and goes and gets tested for it, do yourself a favor and also check out the integrity of your immune system. How do the different classes stack up? SubClass IgG 1 etc...? Because if you are deficient, it may bloody well matter.

I even tried pulsing dapsone along with some rifampin and ceftin. And chase it down with a jigger of mino. These abx cocktails leave my brain on fire, and my thoughts just smolders.

I recently did a 180 and I stopped abx in favor of immune modulators - just to see what happens. My head weighs 30lbs and I sometimes tilt to one side when I walk/stumble, and I smile with a child's joy when I nail a coherent sentence...Plaquenil is often the drug of choice for clinicians that dont believe chronic Lyme is an active infection, but rather the byproduct of a corrupted immune system. Many of these individuals are Steere disciples, and they may be right. But even if they are, they are going about it the wrong way, at least in my opinion. They should FIRST prove Lyme and company has been eradicated before they point a finger at autoantibodies. It feels kinda like an assumptive close, this thing that some researchers are doing, turning their backs on twisting spirochetes to conjure instead the spectre of autoantibodies of uncertain lineage and doubtful relevance. Hell, just look at what Steere has done with the concept - pretty much pounded it into the ground. But...they just may be right.

You need a super clinician just to coalesce this into something malleable so that a body can build off of it.

That's where doctors like the one discussed in this thread come into play.

 

[neweimear]

I am another with both Borrelia afzelii infection and ME (based on my severe PEM episodes). I recently moved house and.became so disorganised that I stopped taking two of my antibiotics for a few weeks. The fact that some of my 'Lyme' symptoms returned after a week and my PEM worsened shows that, in my opinion, the Borrelia was still there. It seems to be always ready and waiting for a chance to grow again.

Do you mind me asking where u got tested and if you used Elisa Spot, what score did u get?

 

[Mel9]

Do you mind me asking where u got tested and if you used Elisa Spot, what score did u get?

I had positive Western serum immunoblot results at two Australian labs.