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

msf

Senior Member
Messages
3,650
I'm also in that category at the moment, so as I said earlier, it's interesting that KDM seems to be saying that LPS can cause some of the general symptoms, rather than the Lyme cell wall in particular, especially since we both seem to be chronically infected with LPS-producing bacteria.

I really don't have much respect for the NHS when it comes to these kind of disease, though it seems that a lot of other countries aren't very good at treating this kind of thing either.
 

paolo

Senior Member
Messages
198
Location
Italy
I'm also in that category at the moment, so as I said earlier, it's interesting that KDM seems to be saying that LPS can cause some of the general symptoms, rather than the Lyme cell wall in particular, especially since we both seem to be chronically infected with LPS-producing bacteria.

I really don't have much respect for the NHS when it comes to these kind of disease, though it seems that a lot of other countries aren't very good at treating this kind of thing either.

I heard a lecture by KDM in which he linked LPS to leaky gut, in other words he said that the origin of the LipoPolySaccarid that he was finding in blood samples was from intestinal flora which travels through gut walls.

Is he now linking LPS to borrelia?
 
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justy

Donate Advocate Demonstrate
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5,524
Location
U.K
I heard a lecture by KDM in which he linked LPS to leaky gut, in other words he said that the origin of the LipoPolySaccarid that he was finding in blood samples was from intestinal flora which travels through gut walls.

He is now linking LPS to borrelia?
sorry for using Wikipedia - its the quickest for me right now

http://en.wikipedia.org/wiki/Lipopolysaccharide

The good thing about KDM is that he does not remain static - he moves on and moves his treatments on as new ideas/tests etc become available.
 

Folk

Senior Member
Messages
217
Folk, so from a sample of one you can tell whether the rate KDM states is accurate or not? Also, if you had looked into it more, you would have found out that KDM says that the ´unsuccessful´ patients included 5% who (like Snowathelete) had been treated for less than a year, which was less than the average for the successful patients, and therefore if all these patients had continued treatment then it is likely that the 'successful' group would have been larger. Of course, this was based on his own reporting of a report that I can't find, so like all the other ME specialists, you have to take this on faith at the moment, with the conceit that the Norwegian ME study found similar levels of success in the small number of KDM patients they have data for.

With regard to your first point, it shouldn't be true, but what if it is?

Lol...
First I gave you a sample of one because you asked me if I could
put a name to any of the ´unsuccessful´ stories?
.
Second I'm not basing nothing. As I said, I was asking a legit question, "does anyone get better with KDM" cause all I see is people getting worse after years of nighmarish herxing.
Sorry, but he is not god. And it's okay to doubt on him, that doesn't make me the devil.
 

Valentijn

Senior Member
Messages
15,786
Second I'm not basing nothing. As I said, I was asking a legit question, "does anyone get better with KDM" cause all I see is people getting worse after years of nighmarish herxing.
Sorry, but he is not god. And it's okay to doubt on him, that doesn't make me the devil.
Yes, many people are being helped by him. Several on this forum, and more in his clinic who are not on this forum. Additionally, he is a Belgian doctor, and I doubt most of his local patients spend a lot of time on an English forum.

No one said he's a god, least of all himself. But repeatedly bad-mouthing him every couple of months, ignoring everyone who says he's been helpful, and dedicating yourself to discouraging everyone from seeking treatment with him is very tiresome. If you want to stop ME/SEID patients from seeing specialists, you'd might as well just take a course in illness-denial CBT and set up a clinic.
 

Folk

Senior Member
Messages
217
Yes, many people are being helped by him. Several on this forum, and more in his clinic who are not on this forum. Additionally, he is a Belgian doctor, and I doubt most of his local patients spend a lot of time on an English forum.

No one said he's a god, least of all himself. But repeatedly bad-mouthing him every couple of months, ignoring everyone who says he's been helpful, and dedicating yourself to discouraging everyone from seeking treatment with him is very tiresome. If you want to stop ME/SEID patients from seeing specialists, you'd might as well just take a course in illness-denial CBT and set up a clinic.

I'm not bad mouthing anyone. You got mad in the first place because I said some months ago that KDM was finding Lyme in everyone and I thought that was at least strange. Well there you go, now he said that loud and clear with his own mouth and allow me to still find that strange? Perhaps (and I'm with you on that: really hoping so) I'm totally wrong.

I'm not ignoring anyone who say's got better. I know Sushi did, and I've read your whole thread, still I don't know if you did, but happy for you if the answer is yes. Don't recall anyone else who did and would love to know if there is more...

And yes I went to forums and blogs from Belgium and Spain. Where I found more unsuccessful stories apart from people complaining the way they were treated by him or his staff. It's one side of the story but that's the most I could get till now.

About the CBT stuff... I'm not even wasting my time...
 
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Messages
180
Folk is right to be skeptical. I am rather torn on this subject because I am currently being treated by KDM's clinic and I appreciate the difficult job they have on their hands and how unique they are in actually attempting to do it, so it would be unbecoming to sit here and denigrate that effort but the reality is the standard of care, if it were any other disease (aside from ME/CFS on the UK NHS perhaps :rolleyes:) or any other context, would be shockingly sub-standard. The reality, I suppose, of one person trying to treat so many people with such little help, but one has to wonder why he has not attempted to move towards a more collaborative effort that would allow a closer doctor/patient relationship, or at least have someone that can help with answering the myriad of questions that inevitably arise during the course of treatment.

Onto the topic, I am not sure if the LTT-Elispot is reliable enough or well validated enough to be the basis for the assertion that Lyme and CFS are equivalent, I think you would need to see both positive tests before hand followed by negative results after treatment and the patient is in remission to even begin talking about it. Personally I was negative on LTT-Elispot and then positive after a re-test, I am still to be convinced I even have Lyme and I am 7 weeks into IV antibiotics. KDM has had hypotheses about ME/CFS in the past that have since taken a back seat, which of course does not discredit his current belief at all but it should serve as a reminder that this is a complex problem that may refuse to yield to a simple explanation. I would prefer it if he actually presented the evidence in its entirety before even dropping so much as a hint. The last two times I saw him he was talking about groundbreaking studies which apparently, due to the lessons learned from XMRV, are taking a long time to be published.

Maybe in a couple of months I will be singing a different tune but so far my skepticism about chronic Lyme and the treatment of it is only being intensified.
 

Valentijn

Senior Member
Messages
15,786
I don't get moody when someone disagrees with me. I get moody when someone seems to be out with a vendetta against a doctor who is trying to help a lot of people, won't acknowledge views who disagree with his, nor respond to those views, and then brings the subject up out of the blue again every couple months. Wouldn't it be easier for you to go reread those threads, if the goal isn't simply negative publicity aimed at a ME/SEID doctor?
And yes I went to forums and blogs from Belgium and Spain.
Excellent. I speak enough Dutch and Spanish to understand the contents of both. Could you please provide links to the relevant threads or posts in those forums?
 
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Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
@msf yes I can see now that my reading of the situation was not correct and KDM is finding Lyme in 95% of his patients - im not one of them - yet! LTT was negative, but I do have Bart, Cpn, waiting for Babs testing and mold panel right now. Will probably re test at some point, but all my other immune markers suggest a gram negative bacterial infection.

Hey Justy, @paolo mentioned Keith Jarrett recovering from CFS after treating a bacterial infection. For what it's worth I've read the infection was Cpn. In an interview with the Guardian he claimed he recovered with "conventional medicine used unconventionally."
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
My two cents: the 95% number seems unbelievably high. It also doesn't seem to be consistent with that CSF protein study a couple years back apparently differentiating the two conditions. Though it's important to note there was overlap between the ME/CFS group and the "post Lyme" group that didn't include healthy controls. That said, there's not a doubt in my mind borrelia can persist and that it can, at the very least, complicate ME/CFS. I can feel it in my knees and brain at this very moment.
:ill:
 

Folk

Senior Member
Messages
217
I don't get moody when someone disagrees with me. I get moody when someone seems to be out with a vendetta against a doctor who is trying to help a lot of people, won't acknowledge views who disagree with his, nor respond to those views, and then brings the subject up out of the blue again every couple months. Wouldn't it be easier for you to go reread those threads, if the goal isn't simply negative publicity aimed at a ME/SEID doctor?

Excellent. I speak enough Dutch and Spanish to understand the contents of both. Could you please provide links to the relevant threads or posts in those forums?

If you think I don't have the right to be skeptical (specially about a controversial subject) and that by doing that I'm aiming negativity at a Dr., and if you think discussing the thread's subject is "bringing it out of the blue" then ok....

Oh and just in case anyone misinterpreted as much as you did, which I strongly doubt, I'm not advicing anyone to not go and see a ME/CFS specialist. I might as well perhaps go and see KDM myself.

About the threads you ask, other than the PR ones I have only one link saved if you want to take a look: http://www.sfc-em-investigacion.com/viewtopic.php?f=11&t=2788&hilit=meirleir

If there's anything else you want with me, please PM me, I don't feel like anyone will benefit from this discussion anymore.
 
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paolo

Senior Member
Messages
198
Location
Italy
Hey Justy, @paolo mentioned Keith Jarrett recovering from CFS after treating a bacterial infection. For what it's worth I've read the infection was Cpn. In an interview with the Guardian he claimed he recovered with "conventional medicine used unconventionally."

Hi Dufresne,

could you provide a link to that interview (if it is on-line). I wrote to Keith Jarrett about two years ago, in order to have some advise, and informations about is way of healing. But he never replayed.

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'.
 

paolo

Senior Member
Messages
198
Location
Italy
Excellent. I speak enough Dutch and Spanish to understand the contents of both.

Hi Valentijn,

the video in the following link is from the debate in Dutch Parliament which was held about an year ago. From minute 9:40 you can hear KDM who is speaking about the relationship between CFS and Lyme. I can't understand what he's saying, because he is speaking in his own language; but maybe you can.


Would you be so kind to provide a translation for the first few minutes? At the beginning the camera doesn't show the slides, so it is impossible for me to have a clue of what he is talking about. Then we can see the slides, so it's easier to understand.

But I think that in the first three minutes he talks about the percentage of ME patients who have a positive LTT for borrelia.

Thanks so much!
 

msf

Senior Member
Messages
3,650
Folk, I try to be more patient with people on here than I am with others, but I don´t have any patience left in this case. Before you try to make out that I won´t contemplate the idea that KDM might be wrong, I actually enjoy debating other doubters, such as Prof. Edwards, because I actually learn something from them.
 
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msf

Senior Member
Messages
3,650
Hi Paulo, in the interview KDM seems to be saying that the LPS can come from either the Borrelia, or from the translocation of gut bacteria caused by the inflammatory process. So he hasn´t so much abandoned his previous idea as developed it. I actually think the fact that he found raised LPS levels in his patients was probably a crucial step in his understanding of the illness, since it would have got him thinking about bacterial infections rather than viruses and retroviruses.

Re: the presentation at the Belgian senate, I got my former co-worker to translate it for me. He´s a Belgian English teacher in Vietnam (perhaps the only one!) and apparently he wasn´t very impressed by KDM´s gramar...


DM's intro: hundreds of his patients have told him:
"the first couple of weeks after i'd taken antibiotics given me by my doctor, i felt better.",
so - DM argues - some kind of micro-organism must play a role in this.

immediately after that, at 10.40-11.10 DM says literally:
"if you take the criteria for CFS, both the ICC and the Fukuda criteria -
if you take that group [of people] and have them take 3 or 4 different Lyme tests, also the LTT test,
then you'll see that over 95 per cent of those people test Borellia-positive."

(3 per cent have too few lymphosites to be able to take a regular LTT test, but if they're tested again with an extra dose of lymphosites, they test Borellia-positive, too, so the overall percentage is, in fact, well over 95%)

so: DM's conclusion (11.30):
"what well over 95% of people diagnosed with MCE/CFS have,
might very well be not a diagnosis of MCE
but a description of [the symptoms of] a chronic Borellia infection.
"

*
2nd excerpt:
25.15-40
"the profile is pretty much the same for patients the world over:[DM's next sentence is a syntactic disgrace, incoherent and very confusing,
so it's no use translating literally, but looking at the table, i'm pretty sure he must mean the following]
"of the people meeting the ICC/Fukuda criteria for MCE/CFS
many are Borellia-positive (with PCR)
but if those patients take an LTT test, we re very nearly at 100%"25.40:
"Bartonella is easy to test for, and 35 to 50% of the patients test positive for it.
It's a common co-infection of Lyme, difficult to treat, partly also because of the place the bacteria tends to choose,
and which shares many of the characteristics of Borellia."


*

on a happier note:
if you should happen to be in Brussels between July 18th and August 17th, be sure not to miss the Great Brussels Fair !
(dutch: zuidfoor, french: Foire du Midi, their website is also in English, i've seen)
it must be one of the biggest in Europe,
and even if it's not (coz who but Americans cares about size, really?), it must definitely be the most atmospheric
i'll be trying hard to get home by then myself, too!
 

msf

Senior Member
Messages
3,650
Oh, and before someone points it out, my computer (being a Spanish one) corrected my spelling of grammar.
 

paolo

Senior Member
Messages
198
Location
Italy
"if you take the criteria for CFS, both the ICC and the Fukuda criteria -
if you take that group [of people] and have them take 3 or 4 different Lyme tests, also the LTT test,
then you'll see that over 95 per cent of those people test Borellia-positive."

Well, we don't know if he is right. We need very good studies and an international effort to confirm or refuse these conclusions. I can only say that I hope that he is right, for all of us.

I was previously diagnosed with ME, then I discovered to have an ongoing borrelia infection, by PCR testing. I am seronegative for borrelia. So it is possible that those with ME are seronegative Lyme, which may explain why no one before recongnized them as borrelia infection. This can also explain why these people are somehow different from the other boreliosis: they are seronegative, so they have some differencies in their immune response to this pathogen.

When, at Columbia university, they examined Lyme and ME cerebro-spinal fluid, they may have put in ME group seronegative Lyme. So they differenciate seropositive Lyme from seronegative Lyme, instead of seropositive Lyme from ME. These are only personal speculations, of course.

Thanks so much msf, it's very kind of you to share this translation with us.
 
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msf

Senior Member
Messages
3,650
I agree, but I think that is unlikely in the present climate. Even if the results are produced and then reproduced in KDM´s patients, people will just say (rightly) that this is just one population of ´ME´patients, possibly self-selected for Lyme. The right thing to do then would be to try to replicate the result with an international, multi-centre study, but I don´t think this will happen in the near future, as there are too many competing interests, and there is insufficient funding for ME (and Lyme) research.

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?