Interview with Dr. De Meirleir about ME/CFS/SEID and Lyme Oct, 2014

[paolo]

Re: your results, I think a PCR result for Lyme should at least put you in the category of those who have been exposed to Lyme, assuming that the test has adequate specifity. What serological tests have you done? Did they just test for B.b senso stricto, or for senso lato too?

I was tested for serology of Borrelia burgdorferi sensu lato, european strains. I am negative, as one other ME italian patient. We both had a positive response to IV antibiotics, but then we relapsed. So we are searching for long therm treatments.

 

[Helen]

I was test for serology of Borrelia burgdorferi sensu lato, european strains. I am negative, as one other ME italian patient. We both had a positive response to IV antibiotics, but then we relapsed. So we are searching for long therm treatments.

Maybe you were infected by the Borrelia Afzelii or Garni that are more common in Europe?

 

[paolo]

Maybe you were infected by the Borrelia Afzelii or Garni that are more common in Europe?

I don't know, because with the PCR that I made it isn't possible to differenciate the species. I only know that it is positive for Borrelia burgdorferi sl.

My PCR was performed in a very well known Italian centre for Lyme Disease. We have a high concentration of borrelia infected Ixodes in the North of our country. The physician who tested me for Bb, diagnosed me as Chronic Lyme. He says that I developed the symptomatology of CFS due to my chronic borrelia infection.

 

[Helen]

The physician who tested me for Bb, diagnosed me as Chronic Lyme. He says that I dveloped the syntomatology of CFS due to my chronic borrelia infection.

Many of us do, so hopefully a proper treatment will help, or even cure.

 

[Folk]

Anyone know if is there any possible connection with Chronic Lyme and that old theory that "whiplash injuires or car accident stuff" might trigger ME/CFS?

 

[paolo]

Anyone know if is there any possible connection with Chronic Lyme and that old theory that "whiplash injuires or car accident stuff" might trigger ME/CFS?

The following is the theory I developed about Lyme.

When you are infected by an Ixodes (the main vector of borrelia) you may not develop any symptoms for years, maybe for the rest of your life.

But after any stressful events (a vaccine, a viral infection, an accident) your immune system may be weakned for a period, so to allow the latent borrelia infection to spread in your body. So you develop the symptomatology. In this case you won't develop the well known rash, linked to Lyme. May be you won't develop the serology either.

This could explain why CFS is linked to viral infections: if you have a previous latent borrelia infection, a viral infection can activate it, and you develop CFS, a post viral CFS. But the virus is not the cause, it is the trigger of the latent borreliosis.

 

[duncan]

Bb sensu lato includes garinii and afzelii.

What no-nonsense IDSAers would probably say for Lyme patients who test positive (IgM or IgG) post-treatment, is that those are false positives, just echos or immunological scars from earlier infection/exposure.

As we know, ME/CFS patients seem frequently to exhibit elevated values for all sorts of viruses and other pathogens, from HHV 6&7 to Coxsackie A & B. Our immune systems in general seems to yield a greater anti-body response, or at least in some, and for a while. So, there is an argument that says chronic Lyme, including sero-negative values (that would embrace positive Bb IgM metrics after two months) is really just another indicator or red flag for ME/CFS.

I can't convince myself which is right or wrong. I think I change daily. Too many uncertainties.

But I do know that one of the many reasons for those uncertainties is the disingenuous nature of much of the research emerging during the past 30 years, and the severe strangle hold some individuals have on where scarce research dollars are allocated. This holds true for both Lyme diagnostics and treatment. So if any fundamental truths propagated by any of the old Lyme guard were manufactured or exaggerated, that would lead me to lean more toward concluding Bb persists post-treatment.

Accordingly, regardless of how you portion it, a large swath of ME/CFS people would in fact be walking colonies of Bb, and these individuals have late stage disseminated Lyme and have nothing to do with ME.

Or, they could have BOTH ME and Lyme.

Or...What day of the week is it?

 

[celeste]

Not much about his illness, but I think this is it here

http://www.theguardian.com/friday_review/story/0,3605,345455,00.html

There's some more info about Keith Jarrett here:

http://articles.latimes.com/1999/feb/23/entertainment/ca-10710

Antibiotics are mentioned on page 2.

 

[Valentijn]

I was tested for serology of Borrelia burgdorferi sensu lato, european strains. I am negative, as one other ME italian patient. We both had a positive response to IV antibiotics, but then we relapsed. So we are searching for long therm treatments.

I was positive for Lyme, but am still having symptoms (albeit reduced) after 9 months or so of antibiotics. We're doing Bartonella treatment now, since I have the trademark bartonella marks - crazy looking bright red stretch marks showing up in odd places, and running at right angles to each other and such. I've had new sets of marks appear 3 times in the past 8 years, each time shortly after starting an antibiotic: levaquin, doxycycline, and tetralysal. I also had some severe neurological symptoms during the first episode, with a hemiplegic migraine lasting 3 weeks.

Even conventional sources admit Bartonella is a real bastard to test for, since it prefers to hang out in tissues and is rarely found in the blood. So now I'm on Rifampicin for that even though I tested negative for Bartonella.

For the record, I have my own doubts about Dr de Meirleir's claims that nearly all ME/SEID patients have Lyme ... but that's a far cry from proving he's a quack, as some here and/or on other threads have been claiming. His treatment of individual patients is very methodical and careful, and based on sound medical and scientific principles. He is most certainly not throwing antibiotics at everyone who walks in his door asking for them.

 

[duncan]

Clinicians who deviate from IDSA-prescribed therapies are frequent targets precisely because they do not conform. Some of these physicians deserve to be revealed as mercenaries. But many do not. Many are simply trying new therapies in authentic efforts to salvage the lives of their patients.

The problem is, the IDSA scriptures are purported to carry the weight of Science in their ink. To veer away from these is to elicit a response comparable to the biosocialpsychwackjob school: immediate and absolute. And the message couldn't be clearer: No patients should ever receive - and no clinicians ever prescribe - any treatments outside those defined in the Guidelines. Doctors who do stray, run the risk of disciplinary measures; at the very least, they court the contempt of their peers.

The problem is, conventional treatments fail too many people. Hell, conventional diagnostics fail too many people. So, if you're a doctor who is committed to helping patients, what is she/he to do? Turn their backs? Pretend their patients aren't sick? For many, that won't cut it. So they break ranks, and they try.

The response is uncertainty and perhaps calumny.

But there are success stories emerging. Anecdotes, but if you're really sick, an anecdote is a fact - maybe an isolated fact, but a fact nonetheless. String enough of those success stories together, enough of those data points, and maybe some definitive patterns will emerge from clinical investigations. To me, that's much preferred to this Waiting For Godot attitude that pervades the corridors of mainstream Lyme research at bastions like the NIH or NHS.

So. It's hard for me to criticize the courage those genuine doctors are displaying.

 

[Antares in NYC]

There's some good news, though: some states, like New York, have passed laws recently that protect doctors in their right to prescribe medical treatments off-label for difficult treatments that do not respond to traditional therapies (Lyme, ME/CFS, etc). This has gone a long way to protect those doctors and researchers that deviate from the absurdly restrictive guidelines of the IDSA and others.

Lyme specialists in other states run tremendous risks when they put their careers on the line to improve the lives of their patients, since the IDSA not only sets the guidelines but runs around like tattletales to regional medical boards, searching for any deviation and taking any doctor who does not comply to court. In my opinion, this is far and beyond what their duties should be, and it seems particularly abusive if not downright corrupt when the board members of the IDSA have been proven to have obscene conflicts of interest.

Canada is following suit, adopting the IDSA guidelines and enforcing them by law. Lyme patients in Canada have to cross the border to NY state to get treatment, since doctors in Canada are now terrified to lose their licenses even if you mention you've been bitten by a tick. (CBC full documentary available here)

I'm glad Lyme specialists in New York now have the latitude to use their best judgement when treating difficult cases as needed. I think it's revolting that good doctors like Burrascano, Jemsek, Jones, --who have actually improved the lives of thousands of Lyme patients-- are being shut down, put out of business and ruined by this zealous cadre.

PS: A few years back I remember reading an article about how a Lyme patient association in NYC organized a conference in the city, and Wormser and company came to that conference with the authorities to shut it down. And they did shut it down! It was just an association of patients freely gathering to share info and experiences, and they brought in the police to shut it down, claiming it disseminated "leaflets with false medical information". I'll see if I can find the article in Google. I mean, in the US the First Amendment of the Constitution grants you the right to free association. Apparently that can be trampled upon in the name of the purity of the IDSA guidelines. Borderline fascistic tactics, frankly.

 

[Dufresne]

@Antares in NYC, I think only those within Canada can view the documentary you linked to. However it's absolutely true what you're saying about Canadians having no access to treatment. I'm lucky to have a couple friends in other countries to help get stuff to me here in Montreal that I wouldn't otherwise be able to access.

Here's the last clip from celeste's link to the Jarrett article if anyone didn't read it.

"Taking antibiotics for two years can be pretty daunting," he says, "and a lot of people don't want to go through that kind of a course of treatment. But the bottom line is that I want to get well, and I don't care if I have to go through hell to get there."

@paolo wrote:
PS. I also love that movie, The Shawshank Redemption. In Italy the name of the movie is 'Le ali della libertà', which stands for 'Wings of freedom'.

That's an apt and beautiful title. Just like Jarrett, Any Dufresne was willing to do whatever it would take: 19 years of daunting, solitary work; suffering under a corrupt system bent on keeping him exactly where he was; and then finally crawling through 500 yards of shit to come out the other end free.

Personally I can't waste too much energy on the naysayers in power or even the schmucks on forums. To stick with the Shawshank metaphor: they represent the corrupt warden and rapist "sisters" respectively.

 

[Folk]

I wonder if with all those antibiotics (which my insurance (and I guess most) won't cover) wouldn't be best to take a shot at Rituximab.
And I mean both in terms of price and efectivness. The two have no guarantee but Ritux seems closer to a miracle and perhaps even easier on the body (?).

 

[paolo]

I wonder if with all those antibiotics (which my insurance (and I guess most) won't cover) wouldn't be best to take a shot at Rituximab.
And I mean both in terms of price and efectivness. The two have no guarantee but Ritux seems closer to a miracle and perhaps even easier on the body (?).

If you have Lyme (or another bacterial infection) antibiotics go to the root cause of your illness, and you have some chance to recover (I don't know how many chances).

If you have some kind of autoimmunity mediated by CD 20+ B cells, then you can temporarily address this issue with Rituximab.

The main problem is to figure out what is the cause of your own CFS. Then you can choose the appropriate treatment.

Nevertheless it's to say that -as many chronic Lyme patients have anti-brain antibodies (50%)- it is possible that Rituximab can reduce some symptoms in these cases.
As well antibiotics can reduce autoimmunity when the autoantibodies are induced by some pathogen, as in PANDAS, for istance.

 

[Antares in NYC]

I wonder if with all those antibiotics (which my insurance (and I guess most) won't cover) wouldn't be best to take a shot at Rituximab.
And I mean both in terms of price and efectivness. The two have no guarantee but Ritux seems closer to a miracle and perhaps even easier on the body (?).

Rituximab is a type of chemotherapy, so I'm pretty sure it must have some side effects, I would think.

 

[Folk]

If you have Lyme (or another bacterial infection) antibiotics go to the root cause of your illness, and you have some chance to recover (I don't know how many chances).

If you have some kind of autoimmunity mediated by CD 20+ B cells, then you can temporary address this issue with Rituximab.

The main problem is to figure out what is the cause of your own CFS. Then you can choose the appropriate treatment.

Nevertheless it's to say that -as many chronic Lyme patients have anti-brain antibodies (50%)- it is possible that Rituximab can reduce some symptoms in these cases.
As well antibiotics can reduce autoimmunity when the autoantibodies are induced by some pathogen, as in PANDAS, for istance.

Yes I'm aware of that. But if we go by the only study that we had untill now where 10 out of 15 had a good improvment or remission. We would be considering that, if KDM is right and a 95% of them have Lyme, it works somehow on those who have Lyme.
I mean it's not like, if you have Chronic Lyme, long term abx IS the answer. It's just a shot in the dark, as much as herbal protocols or Ritux.

Rituximab is a type of chemotherapy, so I'm pretty sure it must have some side effects, I would think.

Yes it does certainly. If you read the Rituximab seciton there's more explanation. Actually in theory one of the side effects is death hehe but reading the testimonials from those who did it, it didn't seem as hard on the body as who did long term abx. I think specially cause the aplications are done within long intervals.

 

[Jonathan Edwards]

Rituximab is a type of chemotherapy, so I'm pretty sure it must have some side effects, I would think.

Actually chemotherapy just means treatment with a chemical - i.e. a drug. It got linked to cancer because treating cancer with drugs rather than surgery or radiation was new in the 1970s. But aspirin is chemotherapy, so is penicillin.

What most people mean by chemotherapy is cytotoxic therapy, like cyclophosphamide or adriamycin. Rituximab bears no relation to drugs of that sort. It kills B cells specifically and has no effect on other cells so does not produce the side effects of typical cytotoxics. It has other potential problems, but quite different ones.

 

[Sushi]

Moderation Note:

Several posts in this thread have been edited to remove personal attacks. It is fine to discuss things, even with vehemence, but not to post negative personal comments about those you disagree with.

 

[NK17]

@Jonathan Edwards do you know if Prof. Mella and Dr. Fluge have ever tested their ME patients and/or study participants for Borrelia and co-infections?

It would be really interesting to know in light of all these exchanges here on PR and anecdotals reports of Lyme, Bartonella, Babesia "overlapping" with ME.

I would really love if any of you real scientists and doctors participating at the next Invest in ME conference would look into this and even more if you could report to us.

What is your personal opinion on this specific subject, if you have any?

 

[msf]

I can anticípate some of Prof. Edwards concerns with KDM´s approach, the chief one being that there isn´t a ´gold standard´ for diagnosing Chronic Lyme.

This is a problem for other bacterial infections too, like Yersinia (not the plague kind, it´s quite obvious if you have that). I thought of a possible way of detecting these infections in patients (or at least in patients in a study), and then I saw that cancer researchers have been using an analogous idea to help their patients determine which treatments will work best for their particular cancer.

http://www.nydailynews.com/life-sty...testing-drugs-mouse-avatars-article-1.2045646

My idea (I´m sure someone has had it before), is that blood from patients could be transfused into mice, and the mice could then be sacrificed to see if they had become infected by Lyme, Yersinia, etc.

I can see a lot of potential problems with this approach, principally that other antigens (as well as antibodies) in the blood would kill the mice before the slower-growing bacteria had a chance to establish themselves. One way it might be possible to avoid this would be to use knock-out mice, i.e. mice that have been genetically engineered to be extremely susceptible to the organism you are investigating the presence of.

It has also just occurred to me that you might not even have to use blood in some cases, since Yersinia seems to survive in the lower intestine (the cecum). I will leave it to you to imagine the methods that might be required in this case.

If it was possible to do this, then it would likely to be too expensive to do it for individual patients, but it might prove invaluable to test certain hypotheses, such as the existence of antibiotic-refractory Lyme in humans, and the presence of Yersinia and other pathogenic bacteria in patients with reactive arthritis.