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Post Lyme Treatment with KDM

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Hi - I am interested of people’s experiences of treatment with Kenny De Meirleir and whether anyone has had a significant and sustained improvement in symptoms of chronic lymes?

I saw him in early 2015, did the 12 weeks IV abx followed by oral protocol. Definitely saw an improvement in first 6 months to a year but then plateaued. Continued to take oral abx for about 2.5 years but had no further improvement so in the end stopped taking them because I couldn’t justify the cost of it all.

I am definitely better than I was and can do more than before I saw him, but am still plagued with exhaustion, poor sleep, exercise intolerance.

Also he prescribed 2mg Lormetazepam per night to help with sleep. I never took the whole dose as was wary about it - I took which about a third a night which worked for ages however eventually stopped working. I decided to try and come off it but you can’t get it in UK so I saw a private psychiatrist who suggested switching to diazepam and gradually reducing the dose. Am down to 4mg per night. This is ok but it doesn’t feel restorative sleep and I wake up exhausted most mornings.

does anyone relate to this or have a more positive experience? Has anyone become symptom-free through his treatment?
 
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Markus83

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The benzodiazepines are highly addictive. I'm not sure if it's justified to use them just because of bad sleep.

If you think that you have chronic lyme, I would try the Buhner protocol in your case. It won't do the damage that abx do and after 2.5 years of abx I would definitively look for alternatives. Another experimental therapy for chronic lyme which is highly propagated at the moment is Disulfiram.
 

MartinK

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Anyone knows, if KDM now prescride Disulfram too? I didnt see him for 2 years now, I am very interested in how his treatment protocols has progressed.
I was really scared from his loads from atb, so many side effect probably... this is why I turned to herbs and dont see him anymore.
 
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So interestingly, KDM ran a RED lab test came up positive for b. Miyamotoi. This is not lyme, but also a tick carrying disease. He prescribed the following. I am curious if anyone else has been given a similar protocol by KDM for Lyme

--Disulfiram 250mg , 2x 1 a day
--Serrapeptase, 500 mg , 2 x2 a day
--Lauricidin, 1/2 scoop 2x day
--oregano oil, 2 x 1/day
 

Markus83

Senior Member
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KDM ran a RED lab test came up positive for b. Miyamotoi
It's quite common that tests which are not scientifically validated come back positive. I don't know about this lab test. But given that KDM has used Elispot in the past he seems to think that the more test results are positive, the better is it for the patient.

Do you know about Disulfiram? There are several things which are important to know. The patients I know from Germany started with much lower doses and increased them slowly.
 
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It's quite common that tests which are not scientifically validated come back positive. I don't know about this lab test. But given that KDM has used Elispot in the past he seems to think that the more test results are positive, the better is it for the patient.
Your comment about the tests not being scientifically validated is part of the reason I am skeptical. I also don't have the clinic signs. KDM was a bit defensive when I asked about the testing validity. This was a PCR test - which means an acute infection, but there is no way I contracted it recently.
 

duncan

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This was a PCR test - which means an acute infection, but there is no way I contracted it recently.
This is not necessarily completely accurate. You can have late stage Bb and PCR can be used to verify, for instance. PCR can work in both acute and chronic infections. Perhaps you meant "active" infection?
 
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Hip

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I am definitely better than I was and can do more than before I saw him, but am still plagued with exhaustion, poor sleep, exercise intolerance.
Have you been tested for other pathogens linked to ME/CFS, using sufficiently sensitive tests, or was it just Lyme you were tested for? Other pathogens have other treatments.
 

Markus83

Senior Member
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PCR can work in both acute and chronic infections.
Finding B. burgdorferi DNA in blood in chronic Lyme is virtually impossible. Otherwise no one would debate the existence of chronic Lyme. Maybe in B. myamotoi this is different, but I would be skeptical.
 

duncan

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Finding B. burgdorferi DNA in blood in chronic Lyme is virtually impossible. Ot
Culturing it is virtually impossible,. But getting a hit with amplified PCR is certainly doable - it's just that the odds are against it. Bb doesn't like blood; it has tissue-tropism.
 
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Finding B. burgdorferi DNA in blood in chronic Lyme is virtually impossible. Otherwise no one would debate the existence of chronic Lyme. Maybe in B. myamotoi this is different, but I would be skeptical.
This is the test that was run. the scientists who developed it seem to be engaged with the Lyme community - at conferences etc. I have no idea! https://redlabs.be/phelix-phage-borrelia/
 
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Hi - I am interested of people’s experiences of treatment with Kenny De Meirleir and whether anyone has had a significant and sustained improvement in symptoms of chronic lymes?

I saw him in early 2015, did the 12 weeks IV abx followed by oral protocol. Definitely saw an improvement in first 6 months to a year but then plateaued. Continued to take oral abx for about 2.5 years but had no further improvement so in the end stopped taking them because I couldn’t justify the cost of it all.

I am definitely better than I was and can do more than before I saw him, but am still plagued with exhaustion, poor sleep, exercise intolerance.

Also he prescribed 2mg Lormetazepam per night to help with sleep. I never took the whole dose as was wary about it - I took which about a third a night which worked for ages however eventually stopped working. I decided to try and come off it but you can’t get it in UK so I saw a private psychiatrist who suggested switching to diazepam and gradually reducing the dose. Am down to 4mg per night. This is ok but it doesn’t feel restorative sleep and I wake up exhausted most mornings.

does anyone relate to this or have a more positive experience? Has anyone become symptom-free through his treatment?

Hi,

I still have no protocol from Dr Kenny but should get one in 2 weeks, I can let you know.
for insomnia Im trying CBD oil, Im getting such a deep sleep and sometimes it is too much of sleep. So far I enjoy it much. I know diazepan is much more stronger but maybe as a fase out CBD could serve you well.
 
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Is there a way to order this disulfiram online?
I have heard people ordering it from India, some bought it in Spain (there is a faecbook group dealing with it). But mainly you have to have a prescription and then you can still order it from wherever.
 

MartinK

Senior Member
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What I find for Disulfram is start with low dose (65mg) 1x day and 3 days off.
Go for higher dose every 14 days...500mg 1x day is maximum dose.
great informations here: http://disulfiram.net/
many people have neuropatia from DSF, looks like thiamine and NR helps!
 
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A bit more info, as I contacted KDM's office: Here were my questions and his answers
______________
It says 'lyme protocol'', but I do not have lyme. I have Boriella Miyomotoi which is different.

1. Can you confirm that I have been given the correct protocol? “Yes”

2. Is this a repeating protocol or only taken for 8 weeks? “possibly repeated”
________________________
I see that on the http://disulfiram.net/ site, it says treatment may last as long as 6 months so that fits with KDM's response