• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Helen

Senior Member
Messages
2,243
I can´t find any earlier post about this radioshow from October, 2014. Please tell me if I am wrong and this should be deleted.

The radioshow was produced by Katina Makris in Lyme Light Radio, with the title Lyme disease in Belgium. The first part is an interview with a Belgian Lyme patient and from about 31:20 you will hear Dr. De Meirleir talk about ME and Lyme, their connections, research, future a.o.

I would recommend listening, as there is much food for thoughts and hope whether you are diagnosed with Lyme or not.

http://www.thedrpatshow.com/shows/mak-141001-van-dromme.mp3
 
Last edited:

Folk

Senior Member
Messages
217
So... That's the first time I Dr. Meirleir says with all the words CFS/ME is actually late stage lyme.
Am I right?
 

msf

Senior Member
Messages
3,650
Shannah, I pointed out some of the problems with the Natelson study in another thread, I think it was the one about the latest Lipkin study.

Wow, did anyone one else get a chill when KDM says ´It´s exactly the same thing?´ I mean, I think we all knew this is how he views it, but it´s still something to hear him say it in plain English.
 

Helen

Senior Member
Messages
2,243
Wow, did anyone one else get a chill when KDM says ´It´s exactly the same thing?´ I mean, I think we all knew this is how he views it, but it´s still something to hear him say it in plain English.

I did. That is why I posted the interview ;).
 

Folk

Senior Member
Messages
217
Shannah, I pointed out some of the problems with the Natelson study in another thread, I think it was the one about the latest Lipkin study.

Wow, did anyone one else get a chill when KDM says ´It´s exactly the same thing?´ I mean, I think we all knew this is how he views it, but it´s still something to hear him say it in plain English.

Yep totally I did too... I don't know if this is good or bad.
At least he's putting his foot down.

Now only time will tell if he's correct I guess.
 

msf

Senior Member
Messages
3,650
In my opinion, the only real question is what proportion of people who have been diagnosed with ME actually have chronic Lyme? The two doctors who have seen the most ME patients (with the most success, or at least the best reputations) are Lerner in America and De Meirleir in Europe. The first finds Lyme in a proportion of his patients, the second now finds it in the majority of his patients. Allowing for the difficulties in Lyme testing, it is likely that a higher proportion of Lerner´s patients have Lyme, and that some of them are undiagnosed. The real proportion will also be affected by environment, so Lyme will make up more of the burden of illness in those areas particularly affected by Lyme.

The other remaining question, as I see it, is whether the remaining cases are caused by another infection or from some purely auto-immune process. From De Meirleir´s necessarily simplistic outline, it would seem possible that other gram-negative bacteria, such as Yersinia, could cause similar symptoms. It is also likely that those who are more severely affected by Mono are also represented in most patient populations, along with patients with more glamourous but less common diseases such as Q fever, Ross River fever (present in the Dubbo cohort), and West Nile Virus.
 

Folk

Senior Member
Messages
217
In my opinion, the only real question is what proportion of people who have been diagnosed with ME actually have chronic Lyme? The two doctors who have seen the most ME patients (with the most success, or at least the best reputations) are Lerner in America and De Meirleir in Europe. The first finds Lyme in a proportion of his patients, the second now finds it in the majority of his patients. Allowing for the difficulties in Lyme testing, it is likely that a higher proportion of Lerner´s patients have Lyme, and that some of them are undiagnosed. The real proportion will also be affected by environment, so Lyme will make up more of the burden of illness in those areas particularly affected by Lyme.

The other remaining question, as I see it, is whether the remaining cases are caused by another infection or from some purely auto-immune process. From De Meirleir´s necessarily simplistic outline, it would seem possible that other gram-negative bacteria, such as Yersinia, could cause similar symptoms. It is also likely that those who are more severely affected by Mono are also represented in most patient populations, along with patients with more glamourous but less common diseases such as Q fever, Ross River fever (present in the Dubbo cohort), and West Nile Virus.

But there's more I guess.

First is ok, De Meirleir is finding Lyme in most of his patients but how accurate are the tests? If they were 100% wouldn't Lerner ( for example) be using too, and finding simmilar %?

Second is the other treatments bringing results. Like Dr. Chias and his gut enterovirus findings + treatment and specially Rituximab, I don't understand, is there anyway Rituximab could be effective if the target is Lyme?
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Thanks Helen, have given this a good listen this time around. At approx. 48 minutes he talks about a soon to be, large study showing the same abnormalities in cytokines and other immune parameters in M.E/Lyme patients versus healthy matched controls - he says its a large study and being written up. He states that from just looking at these 4 parameters in the blood he can identify an M.E/Lyme patient from a healthy person.

Does anyone know what happened to this study?
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
He states ' there is negligence here' - the same thing he told me a few weeks ago when I asked him if I had made my daughter ill - he feels patients have been very seriously let down by the medical profession. It's nice to hear him sticking up for patients in this way.
 

shannah

Senior Member
Messages
1,429
Thanks Helen, have given this a good listen this time around. At approx. 48 minutes he talks about a soon to be, large study showing the same abnormalities in cytokines and other immune parameters in M.E/Lyme patients versus healthy matched controls - he says its a large study and being written up. He states that from just looking at these 4 parameters in the blood he can identify an M.E/Lyme patient from a healthy person.

Does anyone know what happened to this study?

Wonder if there's any distinguishing between long term patients and under 3 years as in Lipkin/Horning study.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Wonder if there's any distinguishing between long term patients and under 3 years as in Lipkin/Horning study.

That would be interesting to see - but I shouldn't think KDM sees a lot of patients who are less than 3 years ill, most who go to him have been though many Drs, many diagnoses before going to him.
 

msf

Senior Member
Messages
3,650
Folk, your first question can basically summed up as, why are different doctors using different Lyme tests? The answer is because there is no standard test in the absence of a gold standard (culture) for testing. However, it is likely and logical that Lyme is underdiagnosed rather than overdiagnosed using the two-tier test.

Re: Rituximab, you´ll notice that KDM mentions that it ´ME/Chronic Lyme´is no longer a purely infectious disease, i.e. there is likely to be an auto-immune component too. There was a thread posted in the Lyme forum yesterday about the potential benefits of Dexamethasone in Lyme, another drug (like Rituximab) that is used in Rheumatoid Arthritis, an auto-immune condition.
 

duncan

Senior Member
Messages
2,240
msf, the thing about that Tulane study is that it is recommending steroidal treatment in acute neuroborreliosis cases. That's really striking because the general consensus - I think found in Burrascano's guidelines? - is to avoid steroids. It's one of the big no-no's.

So, this study would suggest that there are times steroids are not necessarily contra-indicated, and when used in conjunction with abx therapy, may hush an aroused immune system after spirochetes have been eradicated.

Of course, they only looked at rhesus monkeys, and only up to 14 weeks. I would be interested to know what would have happened at four months out, or six months - would the bacterial load have returned with a vengeance?

I would have kept checking for at least two years.