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

[Daffodil]

well, i can tell you that i was sick 24 yrs, bedridden for part of it and now i can sometimes walk 2.5 miles.

i dont imaginie i will ever gain more than 45% functioning and dont even know if i will ever get my brain back (KDM also doesnt know)....but i am very glad i went to see him

 

[PhoenixDown]

At the time of this post, K. de Meirleir diagnoses one or multiple bacterial infections in nearly every ME/CFS patient he sees

Why don't you type out Kenny De Meirleir in the title so it will appear in search results?

Edit: Title has been changed.

 

[dadouv47]

https://www.omf.ngo/what-is-mecfs-old/lyme-disease-initiative/

''Many people who are infected with Borrelia, the Lyme disease bacteria, develop ME/CFS symptoms. So whether it is chronic Lyme disease, a post-Lyme disease syndrome or Lyme disease developing into ME/CFS, understanding ME/CFS and its infectious triggers better will reveal more about the chronic condition many Lyme disease patients develop.''

The OMF doesn't seem to differ from KDM point of view that Lyme could trigger ME/CFS.

Are you going to blame the OMF as well?

Maybe KDM overestimates ratios of Lyme disease in his patients (by treating some patients who are borderline positive), but he shares the same principles as described by the OMF.

 

[A.B.]

Maybe KDM overestimates ratios of Lyme disease in his patients (by treating some patients who are borderline positive), but he's shared the same principles as described by the OMF.

So you are saying the Open Medicine Foundation thinks it's a good idea to treat ME/CFS with antibiotics? Just trying to understand your position.

 

[dadouv47]

So you are saying the Open Medicine Foundation thinks it's a good idea to treat ME/CFS with antibiotics? Just trying to understand your position.

You are already changing the main subject of the topic.

You started a topic mentioning the fact that KDM almost always finds an infection in his patients : the OMF and many CFS specialists agrees on the fact that Borrelia (or others like EBV) could trigger ME/CFS. You were already criticizing this idea saying it's ''KDM crazy theory'', but it's shared by the vast majority of CFS Doctors and researches, including the OMF.

I was answering to the main subject of your thread. Claiming that only the crazy KDM thinks that way, which is absolutely false.

If it's important to treat your infection with antibiotics or to treat leaky gut with antibiotics, there are every kind of hypothesis and I'm open to everything. I can see the benefits to treat some very active forms of Lyme, as well as I can see reasons to treat leaky gut with antibiotics. You can disagree, and he can make clincal mistakes and bad diagnosis (saying someone is suffering from active Lyme while it's not the case), but it doesn't mean his premise is wrong.

 

[A.B.]

That ME/CFS is due to an ongoing infection with borrelia is a fringe view. It is not shared by the vast majority of ME/CFS doctors, researchers, or the Open Medicine Foundation. 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. De Meirleir's view does not enjoy widespread scientific support, sorry.

 

[Daffodil]

@A.B. its not an ongoing infection only..there is something else keeping the infection and other infections on going. there is a fault in the immune system and KDM knows what it is. It has to do with an inflammatory pathway. a particular one.

 

[dadouv47]

That ME/CFS is due to an ongoing infection with borrelia is a fringe view. It is not shared by the vast majority of ME/CFS doctors, researchers, or the Open Medicine Foundation. 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. De Meirleir's view does not enjoy widespread scientific support, sorry.

KDM thinks borrelia triggered ME/CFS in my case. And he's not treating me for Lyme. He never gave me any antibiotic for Lyme. That's EXACTLY what the OMF described and what KDM said to me.

 

[duncan]

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.

Perhaps KDM believes Bb is the culprit. I'm not saying he does, but if he does, how is this any different than any other ME/CFS expert treating according to their pet theories? Moreover, at least a couple ME/CFS experts believe that a corrupted immune system can foment refractory Lyme, ie, ME/CFS renders a pwME who contracts Lyme unable to readily resolve it.

De Meirleir's view does not enjoy widespread scientific support, sorry.

Whose does?

 

[Marky90]

@A.B. its not an ongoing infection only..there is something else keeping the infection and other infections on going. there is a fault in the immune system and KDM knows what it is. It has to do what an inflammatory pathway. a particular one.

He knows what causes ME? Then he should write about it and get the nobel prize..

 

[Daffodil]

@Marky90 i believe there is a paper in review at some journal or something

 

[A.B.]

KDM thinks borrelia triggered ME/CFS in my case. And he's not treating me for Lyme. He never gave me any antibiotic for Lyme. That's EXACTLY what the OMF described and what KDM said to me.

I can't properly respond to this statement because I have been asked not to reveal personal information and will not do so.

All I can say is that de Meirleir clearly believes that most of patients have "late stage lyme disease" and that the treatment almost always involves several antibiotics. This is not consistent with a hit-and-run hypothesis but with an ongoing infection hypothesis or some variant of it.

 

[Marky90]

@Marky90 i believe there is a paper in review at some journal or something

Cool, I`ve been waiting for some publications from him

 

[dadouv47]

I can't properly respond to this statement because I have been asked not to reveal personal information and will not do so.

All I can say is that de Meirleir clearly believes that most of patients have "late stage lyme disease" and that the treatment almost always involves several antibiotics.

Not for inactive Lyme, and you should know it very well.

And if u know some personal informations about me, you know that I'm not lying about my case (I respect the fact that u keep privates informations for you, thank you!)

 

[A.B.]

Not for inactive Lyme, and you should know it very well.

Can you explain? I don't know what you mean.

 

[Groggy Doggy]

At the time of this post, Kenny de Meirleir diagnoses one or multiple bacterial infections in nearly every ME/CFS patient he sees and has been doing so for several years. This conclusion is based on my time as member of a forum for patients of de Meirleir where I had the chance to see the diagnoses and treatment plans of other patients.

These diagnoses are in stark contrast to published research which shows no evidence of such high prevalence of bacterial infections in ME/CFS patients.

Yes, I am aware that KDMs protocol uses treatments aimed at bacterial infections. Seems this is how he sees ME. Just like Montoya thinks ME is an infectious disease, and uses antivirals. It's possible that KDMs approach could work for a small subset, just like Montoya's approach could work for another small subset.

But I feel the vast majority of us, need to be treated with personalized customized treatments.

 

[duncan]

All I can say is that de Meirleir clearly believes that most of patients have "late stage lyme disease"

Good luck proving him wrong, even if you are correct.

Good luck proving any of the theories from leading ME/CFS clinicians/researchers are wrong. Even by trying the therapies and failing, it does not necessarily prove them wrong.

It's a tough time to be a patient.

 

[dadouv47]

Can you explain? I don't know what you mean.

He distinguish people who have active versus inactive Lyme, which is what every Lyme specialist do. He will treat with antibiotics against borrelia if he believes you have active Lyme, otherwise he will only treat the consequences of it (leaky gut, neurotoxins etc...)

There are not a single test in the world to distinguish both kinds, so it's essentially a clinical diagnosis (Dr.Horowitz and other Lyme specialists do the same).

PS : From what I heard, 3-4 years ago he used to treat Lyme more aggressively for almost every positive case, while now he doesn't. Some patients doesn't like the fact that he's not treating Lyme so aggressively, while others (like you I guess) think he shouldn't treat their patients with antibiotics for Lyme. I personally think it's very difficult to know and clinical mistakes are obviously existent. I think his knowledge about Lyme is way better now than it was some years ago, but there's no magical pill (both from Lyme and for ME).

 

[dadouv47]

I can't properly respond to this statement because I have been asked not to reveal personal information and will not do so.

All I can say is that de Meirleir clearly believes that most of patients have "late stage lyme disease" and that the treatment almost always involves several antibiotics. This is not consistent with a hit-and-run hypothesis but with an ongoing infection hypothesis or some variant of it.

You are right about the name ''Late stage Lyme'', but late stage lyme (or ''post lyme'') could mean = You don't suffer from Lyme anymore, but from the consequences from it.

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

 

[duncan]

He distinguish people who have active versus inactive Lyme, which is what every Lyme specialist do.

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