Why does Kenny De Meirleir diagnose almost every patient with bacterial infections?

[A.B.]

You are wrong about the antibiotics. Way less than the majority of his patients are taking specific antibiotics for infectious diseases.

I know what I've seen.

 

[dadouv47]

Perhaps he tries to, but he cannot do this with any certainty as far as I am aware.

That's why I said it's a clinical diagnosis and he can make mistakes

Since there are no test to distinguish both, every Lyme specialists faces this difficulty. Probably some are better than others when it comes to clinical diagnosis.

 

[dadouv47]

I know what I've seen.

I won't try to interfere in your beliefs, but you should have more evidences before claiming that he treats most of his patients with antibiotics for infectious disease (I'm not saying that he doesn't treat 90+% of his patients with antibiotics, yes he does, but most are antibiotics for the gut and not for Lyme)

 

[Research 1st]

Something sufficiently serious to break the emotional attachment and desire to believe that can blind patients.

Interesting you believe that KDM's patients and others around the world who follow his findings, and also then find evidence of infections using labs in their own countries, who also get treated and also feel better are not actually infected but instead guilty of:

''Emotional attachment'' and being ''Blind''.

Do you really believe this of the people who use this form, KDM's patients, and patients worldwide who discover such infections?

Maybe CFS specialists such as Dr Jose Montoya,Dr Kogelnik, Dr Peterson, Dr Lerner (RIP), Dr Chia, Dr Cheney and others who find infections are also as delluded as their patients in clinic?

I'm curious, please educate me into the point of this thread.

 

[Nielk]

Doesn't KDM own Redlabs?

 

[Daffodil]

@A.B. from the limited things i have heard on this board, it seems that Dr. Kaufman uses a similar approach to KDM.

KDM feels that borrelia suppresses the immune system in some particular way

most of us have IBS pre-dating the CFS. this is all somehow related to what he is doing.

there is some kind of inflammatory pathway malfunctioning....it is also possible it is HERV since many of us became ill after EBV.

 

[Daffodil]

Doesn't KDM own Redlabs?

i think so but not all his testing is done there. some things he sends out. he started redlabs because no one was doing the tests we needed done

 

[Nielk]

i think so but not all his testing is done there. some things he sends out. he started redlabs because no one was doing the tests we needed done

Right. Does he do the Lyme testing at Redlabs or somewhere else?

 

[Daffodil]

Right. Does he do the Lyme testing at Redlabs or somewhere else?

he did it at Infectolab but now at Armin lab cuz its cheaper. the guy who invented the test directs or owns Armin

 

[dadouv47]

Right. Does he do the Lyme testing at Redlabs or somewhere else?

The Elispott for Lyme is from Arminlabs (Germany). He says a better test is coming (not from him, in Netherlands).

He still does some tests related to Lyme (co-infections and other parameters in blood tests).

PS : From what I know he sold his shares from Redlabs (but I'm not sure about it)

 

[duncan]

Does he perform Western Blots? I'm just curious since for many THIS is the pivot point.

 

[dadouv47]

Does he perform Western Blots? I'm just curious since for many THIS is the pivot point.

No, it's ELISPOT from Arminlabs. He still is very cautious about this test. He knows it's far from perfect.

 

[Nielk]

he did it at Infectolab but now at Armin lab cuz its cheaper. the guy who invented the test directs or owns Armin

Okay. I know that some years ago there were questions as to the accuracies at his Belgium Redlabs site. Hopefully, it has been straightened out.

I worry about these things because we are so vulnerable being that we are so sick and have few options for care. We are an open target for some who are not necessarily looking for our benefit but for monetary ones.

I'm not saying that this is the case with KDM. Just saying we need to be careful. When a doctor also owns the lab he uses, it may be a problem.

 

[unicorn7]

I have exactly the same experience as Dadouv47.

Don't get me wrong, i'm absolutely not a groupie or something. If tomorrow a better treatment comes a long, then I will be the first to try it. I'm aware of a lot of weaknesses of KDM and his practice (especially on the social and information side...).
I am medically schooled myself and have looked up everything in my treatment on pubmed and found as much evidence as I need for my own treatment. Of course it's personalised treatment, so there is no double blind-placebo tested-gigantic study with loads of patients out there. I really wish there would be better studies, but we can't get to righteous. There are actually loads of treatments in the day-to-day GP practice that have no evidence at all

He tests for subgroups and different parts of the disease (gut problems, neurotoxins, virusses, bacteria) and treats accordingly. From my experience, he is extremely smart and knows a lot, a real prototype scientist guy but also with the downsides of that (communication is not his strong side..).

I don't really know why I feelt the need to defend him, but I think we should maybe not be this hard on someone who has worked in this field for the last 20 years, in a time when nobody was doing anything. The (political) backlash in Belgium against people working in me/cfs has been horrible.

 

[dadouv47]

Regarding Lyme, he basically follows ILADS guidelines.

About the conflict of interest pointed by @Nielk , I agree. It was a big concern for me in the beginning. I come from Belgium but I live far away now and I only see him 2 times a year. I was very surprised last appointment that he didn't want to make a single test, even if I asked if I should do again the tests for co-infections (lots of false negative). Looks like he didn't want my money after all (an appointment is 70 euros so it's pretty cheap compared to other CFS specialists).

I didn't improve so much since I started my treatment (I felt great during a period then I relapsed, now I'm still feeling better than when I started my treatment but it's still very far from being great) but I'm not concerned at all about about the possibility of conflicts of interest or him just trying to get money. I know he's doing all he can for his patients, even if he has many flaws (lack of communication, follow-up) and he can make some clinical mistakes.

It also important to know that it can take sometimes 3-4 years to the greatest Lyme specialists (Dr. Horowitz, Perrone in France etc...) to have significant results on his patients (and obviously there are cases of failure), so with ME it's even more difficult.

He's far from perfect but I don't see a better option in Europe right now

 

[Rossy191276]

No, it's ELISPOT from Arminlabs. He still is very cautious about this test. He knows it's far from perfect.

What are the concerns with elispot? You say a better test is coming-- do you know when... I'd be very keen to hear when his paper is released

 

[dadouv47]

What are the concerns with elispot? You say a better test is coming-- do you know when... I'd be very keen to hear when his paper is released

Too many false positives (which is odd because the ''bad'' common tests have too much false negatives). KDM told me about a study (don't know the details) that showed that 5-10% of healthy people without borrelia infection ended up being positive to those tests.

Some threads here mentioned the ''Tickplex'' test (done from Finish researchers). I don't know if he's already available (he should be) but didn't hear much more things about it recently. Many people had great hopes about this test.

KDM told me the test that he really believes will be the most accurante was being developed in Netherlands. I don't know when it's supposed to be released (and if it will be as good as he says)

 

[ahmo]

It took me 3 years and repeated protocols to eliminate bacterial, fungal, and metal toxins. When I'd finished with it, my quality of life was greatly improved. I still have very limited energy, but am no longer plagued by many symptoms. I feel that I eliminated all the drags on my system, leaving mitochondrial dysfunction as the remaining issue.

 

[Valentijn]

You are misunderstanding the statement that borrelia can trigger ME/CFS with the idea that ME/CFS is due to an ongoing infection with borrelia.

Is it your belief that an untreated Lyme infection won't become chronic?

But I think you are also misunderstanding. A Lyme infection may trigger ME, and it may become chronic, but ongoing ME symptoms are not due to Lyme anymore than they're due to ongoing active EBV. I had Lyme, and it may have helped trigger ME. The Lyme was treated after 20 years, and symptoms caused by that have gone away. It has not impacted upon my ME symptoms.

KDM doesn't just see ME patients. He also sees Lyme patients. They have somewhat different symptoms (no PEM, for starters) and a lot of them seem to do much better after antibiotics. Some ME patients have Lyme, some have other chronic infections, and some have no chronic infections. When those ME patients with infections are treated for their infections, they will likely see some improvement. But they will still have ME.

A few will experience side-effects from the antibiotics. This is very unfortunate, but it is a risk of any treatment. But this is why I'm a herx-Nazi when it comes to people ascribing adverse reactions as being a sign of improvement. Unless it's a spirochetal bacteria being treated with something which can kill it, and the symptoms primarily include fever and hypotension, it absolutely is not a Jarisch-Herxheimer reaction. Some adverse reactions should never be pushed through.

 

[A.B.]

@Research 1st everyone is biased and fallible. All patients and doctors are emotionally attached to their treatments. We need other people and exchange of views to save ourselves from adopting incorrect beliefs.

But I think you are also misunderstanding.

And I think you're trying to hide what is really occurring to protect de Meirleir from health authorities. Almost every patient gets antibiotics, often multiple and in multiple rounds. This is treatment of an infection.

The good and the bad needs to come out into the open and the ideas of de Meirleir need to be discussed so that we can more clearly see which of them make sense and which do not. If you believe in his methods that's fine, but please explain why and try to come up with convincing arguments.