Opinions on de Meirlier

[neweimear]

I think you can be sure that Dr de Meirleir has no valid evidence on which to base his comments to you. He frequently makes statements without valid evidence it seems. As a physician I do not see how he can know what he has told you. You are right to be sceptical. This is not real medicine as far as I know. As you know, I am all in favour of new treatments and have developed them myself, but based on carefully gathered evidence. There is no reliable published evidence that I am aware of on 'leaky gut' in CFS or a proven means of treating it.

@Jonathan Edwards I got my results from Kenny de Meirlier and I want to ask your opinion. I got a weak positive result, score 3, for Borrelia b. Full antigen and Borrelia b. Peptide mix on the Elispot at Armin Labs. When I last met with him he suggested that I was exposed to lymes disease 10 years ago. I have never had any symptoms, had 3 pregnancies in last 10 years. All was well until Jan 2016 when I started to feel rundown. Then in July 16 I got a viral throat infection and by Sept I had to leave work...all ME symptoms had started. I fit the ICC criteria and crash from mild physical, mental or social exertion. I have neurological symptoms but no pain apart from headaches. So I cant see where lyme fits into all of this. He has given me a long prescription and I am afraid to take it all as I have read some negative stories from patients. At the same time, if I have Lymes disease, I need to act. The other notable aspect of my results was a very low cd57, absolute count of 17...reference range 60 -360. I since read low cd57 can be indicative of lyme. I have other abnormal results....low cd14, low nk cell cells, increased il8 and a.host of food intolerances. Is it possible that I have lymes disease now on top of ME, all in the space of a year? I so appreciate any input. I am at my wits end.

 

[unicorn7]

Neweimear, can I ask you what prescription you got?

 

[Alvin2]

The other notable aspect of my results was a very low cd57, absolute count of 17...reference range 60 -360. I since read low cd57 can be indicative of lyme

https://www.igenex.com/testing/diagnostic-tests-for-cd-57-nk-cell-count/

low cd14

I don't understand quite what this does but here is more information
http://www.nature.com/icb/journal/v83/n5/full/icb200562a.html?foxtrotcallback=true

increased il8

Again i don't get how this is related to ME/CFS but more information
https://en.wikipedia.org/wiki/Interleukin_8

In the end this is over my head but i will say that if you test many healthy people you will find many who have something outside the official ranges yet are healthy. Its easy to think outside the range means bad but unless you really know how things interrelate you can't really say. Something like vitamins is more clear cut, immune markers not so much, since immunity is controlled and affected by many things from genetics, diet, exposures, toxins, etc.
I don't know if KDM is interpreting this correctly, so asking Dr Edwards is a good call (if he is still on the forum), you may need an immunologist who can confirm or deny that these findings are significant. All i am saying is don't worry until you get a second interpretation.

 

[frederic83]

I got a weak positive result, score 3, for Borrelia b. Full antigen and Borrelia b. Peptide mix on the Elispot at Armin Labs. .

So you got 3, 3, 0 ?

 

[neweimear]

So you got 3, 3, 0 ?

Yes, 0 for the final borrellia listed..does anyone know if false positives are common on Elisa?

 

[neweimear]

Neweimear, can I ask you what prescription you got?

I won't put it all here as alot relates to the gut. But the lyme treatment is the samento/banderol/cumanda protocol
I just dont believe that I have lyme. All the Red Lab results were negative for lyme. Its the cd57 that worries me....but then God knows how ME screws up our systems...I dont know what to do!!! I will take all his recommendations to heal gut and that is expensive. The lyme protocol is more money. He wants to see me in 3 months...I cannot afford to go again so it will have to be skype

 

[unicorn7]

My cd57 was very low too (12), but I didn't get the samento protocol.
Did you mean low CD14 or high?

You have a say in this, you can just email and say you are unsure and you are going to start with the gut program. You can decide later to start with the other stuff. Or ask for more clarification.

 

[neweimear]

My cd57 was very low too (12), but I didn't get the samento protocol.
Did you mean low CD14 or high?

You have a say in this, you can just email and say you are unsure and you are going to start with the gut program. You can decide later to start with the other stuff. Or ask for more clarification.

Did you test positive for lymes or just have low cd57?

 

[neweimear]

My cd57 was very low too (12), but I didn't get the samento protocol.
Did you mean low CD14 or high?

You have a say in this, you can just email and say you are unsure and you are going to start with the gut program. You can decide later to start with the other stuff. Or ask for more clarification.

Low cd14

 

[A.B.]

@Jonathan Edwards I got my results from Kenny de Meirlier and I want to ask your opinion. I got a weak positive result, score 3, for Borrelia b. Full antigen and Borrelia b. Peptide mix on the Elispot at Armin Labs.

I think he would tell you that Armin Labs sells tests that are usually positive.

He said something to that effect here: http://forums.phoenixrising.me/inde...ut-armin-labs-split-thread.42414/#post-685201

 

[neweimear]

I think he would tell you that Armin Labs sells tests that are usually positive.

He said something to that effect here: http://forums.phoenixrising.me/inde...ut-armin-labs-split-thread.42414/#post-685201

Thanks, I hope he replies to me. I knowi have ME, that is bad enough but to think I have lyme as well just makes no sense. I am a bit scared though. I emailed Armin and I am trying toget hold of Merlier because when he mentioned the lyme, he didnt make it sound alarming, just that I was exposed to it 10 years ago...

 

[A.B.]

Thanks, I hope he replies to me.

He said goodbye to the forums due to these recent events, that's why I replied to you.

 

[neweimear]

He said goodbye to the forums due to these recent events, that's why I replied to you.

Thanks, I hadn't realised he had left...that is a pity, I hope he comes back. Why has he left?

 

[Valentijn]

Thanks, I hadn't realised he had left...that is a pity, I hope he comes back. Why has he left?

A hostile takeover of the forum's board of directors, followed by gross mismanagement.

 

[msf]

@Jonathan Edwards I got my results from Kenny de Meirlier and I want to ask your opinion. I got a weak positive result, score 3, for Borrelia b. Full antigen and Borrelia b. Peptide mix on the Elispot at Armin Labs. When I last met with him he suggested that I was exposed to lymes disease 10 years ago. I have never had any symptoms, had 3 pregnancies in last 10 years. All was well until Jan 2016 when I started to feel rundown. Then in July 16 I got a viral throat infection and by Sept I had to leave work...all ME symptoms had started. I fit the ICC criteria and crash from mild physical, mental or social exertion. I have neurological symptoms but no pain apart from headaches. So I cant see where lyme fits into all of this. He has given me a long prescription and I am afraid to take it all as I have read some negative stories from patients. At the same time, if I have Lymes disease, I need to act. The other notable aspect of my results was a very low cd57, absolute count of 17...reference range 60 -360. I since read low cd57 can be indicative of lyme. I have other abnormal results....low cd14, low nk cell cells, increased il8 and a.host of food intolerances. Is it possible that I have lymes disease now on top of ME, all in the space of a year? I so appreciate any input. I am at my wits end.

Umm, Prof. Edwards has never shown any particular knowledge of Lyme, either of the IDSA or ILADS approach (which is not surprising as he is not an ID doctor). @duncan could tell you way more about it. All Prof. Edwards would offer you is some skepticism about foreign doctors and foreign labs, which you could get from your G.P.

 

[neweimear]

A hostile takeover of the forum's board of directors, followed by gross mismanagement.

Ok, gosh sounds bad. I wonder can anyone here agree that I could ignore my weak positive lyme diagnosis, I just don't believe it and I do not want to take medications that I may not need.

 

[A.B.]

Ok, gosh sounds bad. I wonder can anyone here agree that I could ignore my weak positive lyme diagnosis, I just don't believe it and I do not want to take medications that I may not need.

If it helps you make the decision, I consider having trusted de Meirleir to be a big mistake. If you are able to step back a little you can see the many red flags in his approach. A loner, secrecy, at best controversial science, no reliable data on the outcome of the treatment, he also seems to radically change his treatments every few years, unreliable lab tests, history of legal troubles.

 

[justy]

just that I was exposed to it 10 years ago...

How did he/you come to this conclusion?

It sounds as though you have not been ill that long? Lyme Disease UK Facebook group is groaning under the weight of people misdiagnosed with ME when they have Lyme - a lot of them getting completely better if they treat Lyme adequately.

Lyme can stay in a dormant state in the body and get going again when the immune system has a fresh insult such as a viral infections, stress etc.

I have met a LOT of KDM patients that are hugely improved from his treatments - some back to work, able to drive, socialise, go on holiday, exercise a little etc. I wouldn't freak out just yet.

 

[unicorn7]

Low cd14

I didn't know low CD14 was a problem, I just hear about a high CD14, that's why I asked

I read somewhere he uses CD57, CD14, prostaglandins and IL8 together as a marker for ME.

Thanks, I hope he replies to me. I knowi have ME, that is bad enough but to think I have lyme as well just makes no sense. I am a bit scared though. I emailed Armin and I am trying toget hold of Merlier because when he mentioned the lyme, he didnt make it sound alarming, just that I was exposed to it 10 years ago...

In my case, he considers lyme more as a trigger of the disease, than the ongoing problem.

 

[neweimear]

I didn't know low CD14 was a problem, I just hear about a high CD14, that's why I asked

I read somewhere he uses CD57, CD14, prostaglandins and IL8 together as a marker for ME.



In my case, he considers lyme more as a trigger of the disease, than the ongoing problem.

So does that mean you have both ME and lyme disease if lyme is the trigger? Is that what he thinks for most people? Have u been treated for lyme with any success?