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

Folk

Senior Member
Messages
217
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.

The first one isn't actually an answer... Since there ain't no reliable tests, there ain't no reliable results. Even though you find it logical that with the two-tier test Lyme ends up underdiagnosed, it is also logical that unreliable tests aren't the way of correcting it. Creating false positive results won't make up for the false negatives of the two-tier test.

Still most Lyme specialists claim that Lyme is a clinic diagnostic, which in my opinion just means: If you go first to a ME specialist he'll say you have ME, if you go first to a Lyme specialist he'll say you have Lyme, and if you go first to any other doctor he'll say it's in your head.
 

Valentijn

Senior Member
Messages
15,786
The first one isn't actually an answer... Since there ain't no reliable tests, there ain't no reliable results. Even though you find it logical that with the two-tier test Lyme ends up underdiagnosed, it is also logical that unreliable tests aren't the way of correcting it. Creating false positive results won't make up for the false negatives of the two-tier test.
The Elispot-LTT decreases the false-negative problem quite a bit, without raising the rate of false-positives. There hasn't yet been independent verification of the study showing this, but it's looking good so far.

Still most Lyme specialists claim that Lyme is a clinic diagnostic, which in my opinion just means: If you go first to a ME specialist he'll say you have ME, if you go first to a Lyme specialist he'll say you have Lyme, and if you go first to any other doctor he'll say it's in your head.
There are lab values other than direct evidence of infection which can support a Lyme diagnosis.
 

Nielk

Senior Member
Messages
6,970
Still most Lyme specialists claim that Lyme is a clinic diagnostic, which in my opinion just means: If you go first to a ME specialist he'll say you have ME, if you go first to a Lyme specialist he'll say you have Lyme, and if you go first to any other doctor he'll say it's in your head.

There is a lot of truth to that and if you go to a specialist who treats both Me and Lyme, he will say you have ME/Lyme.
 

msf

Senior Member
Messages
3,650
Folk, I´m not arguing that any one test is 100% reliable, in fact I was arguing the opposite, and since this is the case, I don´t think statements such as 95% of people with ME have Lyme are 100% reliable either. However, if you say that (for instance) 80% of people with ME have some sign of exposure to Lyme, compared to say 10% in controls, that to me would be a fairly strong indication that Lyme has something to do with a lot of ME cases.

As for false positives not ´making up` for false positives, if you go back and read what I wrote again, I did not claim that the true rate of Lyme in Lerner´s patients is likely to be the same as that De Meirler purports to find in his patients, only that the true rate in Lerner´s patients is likely to be higher than what he currently observes. When I said logical, I was referring to the faulty logic of using a two-tier test to diagnose an illness, since the sensitivity will be limited by the least sensitive test, which in this case seems to be the ELISA, and to make matters worse it is used first (so some patients will never know that their Western Blot´s would have been positive, since they have a negative ELISA). Therefore a more sensitive test (such as the WB or LTT-Elispot) which is not limited by a less sensitive one (such as the ELISA), will by definition pick up more cases of Lyme, assuming that the specificity of the three tests is the same.

Also, the difference between a diagnosis of Lyme and one of ME is considerable in my opinión, since the first has a recognized cause and treatments, while the second doesn´t. It´s like the difference between being diagnosed with Malaria and being diagnosed as suffering from mal aria (the symptoms might have been the same in some cases, but the second is potentially a much more useful diagnosis). So if you were suggesting that one diagnosis has as much explanatory potential as the other, I would have to disagree.
 

msf

Senior Member
Messages
3,650
Duncan, yes, that´s also the stance that KDM seems to take in the radio interview. I would just add that we don´t know the long-term effects of Rituximab in these patients either.
 

Folk

Senior Member
Messages
217
Also, the difference between a diagnosis of Lyme and one of ME is considerable in my opinión, since the first has a recognized cause and treatments, while the second doesn´t. It´s like the difference between being diagnosed with Malaria and being diagnosed as suffering from mal aria (the symptoms might have been the same in some cases, but the second is potentially a much more useful diagnosis). So if you were suggesting that one diagnosis has as much explanatory potential as the other, I would have to disagree.

Actually neither one has nothing recognized... Most doctors still don't accept the existance of Chronic Lyme, neither there is a consensus about the treatment for those who believe in it. I don't think I got the Malaria/mal aria stuff... but I'm not suggesting that one diagnosis has as much explanatory potential as the other
I'm suggesting that, after tests showing nothing and doctors dismissing us, we go in a field with two teams: On one side there's the Lyme team and on the other there is the ME team. The first one who sees you calls out loud "MINE" and there's your diagnosis.
 

msf

Senior Member
Messages
3,650
I think you are confusing Chronic Lyme with antibiotic-refractory Lyme, the first is recognised by IDSA, the second isn´t. Both are recognised by ILADS, which has the more logical position in my view (based both on animal data and the simple fact that it is very unlikely that any treatment is 100% effective).

In your sports analogy, I would suggest there that you are much more likely to win (or at least score a goal) if you get yourself picked by the Lyme team.
 

Antares in NYC

Senior Member
Messages
582
Location
USA
I think you are confusing Chronic Lyme with antibiotic-refractory Lyme, the first is recognised by IDSA, the second isn´t. Both are recognised by ILADS, which has the more logical position in my view (based both on animal data and the simple fact that it is very unlikely that any treatment is 100% effective).

In your sports analogy, I would suggest there that you are much more likely to win (or at least score a goal) if you get yourself picked by the Lyme team.
Just wanted to add to msf's post that the ILADS seems more open to research into chronic and antibiotic-refractory Lyme, while the IDSA opposes even the thought of looking into it. And for anyone not familiar with the history of these associations, the IDSA is composed by a tight cadre of good ol' boys led by Dr. Wormser with nauseating conflicts of interests and collusion with the insurance industry. Guess which one of the two associations the CDC listens to?

If you haven't seen it yet, please watch this film: Under Our Skin. Beyond explaining Lyme, this movie exposes the sickening corruption at the core of our health system, which is no longer a societal construct to keep us healthy, but a money-making machine focused on preserving revenues:


And for those not versed in the awful and appalling histories of both Lyme and ME/CFS, let me give you this analogy:

Dr. Wormser is to Lyme as Dr. Simon Wessely is to ME/CFS.
You get the point.
 
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Folk

Senior Member
Messages
217
In "Under our Skin" everyone gets better with the long term antibiotics and no one has a Herxheimer reaction (they didn't even mention it).
Just a thought... I wonder why I've never seen anyone getting better with long term antibiotics and everyone Herxing.
 

Antares in NYC

Senior Member
Messages
582
Location
USA
In "Under our Skin" everyone gets better with the long term antibiotics and no one has a Herxheimer reaction (they didn't even mention it).
Just a thought... I wonder why I've never seen anyone getting better with long term antibiotics and everyone Herxing.
In Under Our Skin also several people die of complications from Lyme.

Not sure I remember references to the herx effect in the 3 or 4 main stories. The park ranger states that after years of intravenous abx he's better, but nowhere near 100%.
 
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Folk

Senior Member
Messages
217
He (the park ranger) says he has hit a plateau in the middle of the movie. In the UOS2 he is 100%.
The girl from U2 was the only one I saw in a website that didn't got 100% well (even though that's not clear in the movie), but she says antibiotics were not the answer for her, she went for herbs I guess.

In your sports analogy, I would suggest there that you are much more likely to win (or at least score a goal) if you get yourself picked by the Lyme team.

So everyone here should be on long term abx? Cause in my team analogy is the team that shouts first who get to pick you and not the one where you fit better.
 

Antares in NYC

Senior Member
Messages
582
Location
USA
He (the park ranger) says he has hit a plateau in the middle of the movie. In the UOS2 he is 100%.
The girl from U2 was the only one I saw in a website that didn't got 100% well (even though that's not clear in the movie), but she says antibiotics were not the answer for her, she went for herbs I guess.
I need to catch the sequel that came out recently. Can't wait!
 

GcMAF Australia

Senior Member
Messages
1,027
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.
There has also been one US MD who found Lyme in most if not all of his ME/CFS
Not sure who, Klinger??
Here in Australia there several doctors who find Lyme predominates in CFS patients, maybe 100 for each MD (GP)
I wrote this in PR sometime ago
but a moderator did not believe this and I have not contributed much since that time
Note that Lyme disease involves many coinfections, either bacteria or viral
 

GcMAF Australia

Senior Member
Messages
1,027
The Lyme tests are getting better or at least not the US CDC tests
They are using DNA tests in many cases and infection can be confirmed with DNA sequencing.
The US government has recently confirmed 300,000 positive Lyme tests per year, up from 30,000
That tells me that the US government (CDC) was 90% wrong.
Some people think this is still an underestimation.
People diagnosed with alzheimer's, MS, autism, arthritis have been diagnosed with LYme infections.
Lyme is also associated with cancer
Maybe it is all Lyme!!
 

NK17

Senior Member
Messages
592
I finally listened to the radio pod cast today, what can I say since I've just been diagnosed by my ME specialist with Lyme ...

The overlapping of symptoms and immune abnormalities are definitely there.

I wish we could get some answers sooner than the 4 or 5 years that KDM talks about.

In the meantime I would suggest that you watch this touching speech of actress Yolanda Foster on her battle with Chronic Lyme Disease, in which she also talks about been treated by KDM:

 

nandixon

Senior Member
Messages
1,092
@NK17
Were you diagnosed with Lyme by Dr. K (#2) at the OMI? Would you mind saying what tests were used and their actual results? Thanks.
 

NK17

Senior Member
Messages
592
Yes Dr. Ka/ Dr. #2 @OMI.
IGeneX was the lab used for testing. Not sure how to report the results, but several important bands are ++.
Now getting tested for Bartonella with Galaxy Lab NC.
 

Folk

Senior Member
Messages
217
Wow I didn't know Yolanda Foster went to see KDM.
Is there ANY success story (not "10-20% improv I guess") from KDM patients? That's a legit question not an accusation. I'm asking that because I've read more then 10 uncessful stories in giant threads that lasted 1-2-3 years in different forums and languages plus some others short ones also uncessful and remember seeing only ONE thread here in PR about a remission from a patient of his who didn't explain nothing just created the thread to give the supplements she had left.

Anyway Yolanda is doing Ozone Therapy now... Wonder how that will turn out, that's one of the few alternative therapies I actually think it's legit.

@NK17 what did Dr. Kaufman said to you about it? Did he said you might have Lyme or he was affirmative? And did he mention about how he would treat it?
 

Valentijn

Senior Member
Messages
15,786
Is there ANY success story (not "10-20% improv I guess") from KDM patients?
You have asked exactly the same questions and received many answers, which you now seem to be ignoring, in other threads. Perhaps it would be easiest if you just reread those threads, instead of insisting we hash it out again every couple months.