Kenny De Meirleir treatment

[Daffodil]

@bostjan01 slovenia has that much Lyme disease? wow. that is so interesting. i had no idea.

i do believe many people are infected but show no symptoms. we have an inflammatory process that weakens us and I really dont know if anyone knows where this is coming from.

demeirleir does indeed have a practice in Slovenia. i think he even has a place where patients can stay and have treatment.

LDN didnt do much for me, I have never tried Rituximab, GcMAF helped a little, IVIG helped a little but i was able to afford only a tiny dose for 6 months. I know someone who stays in remission because she is able to get 25g of IVIG per month.

I also know several people in remission on HIV medications. This makes me think it could be HERV at play...but who knows. What an insane illness we had to get!

xo

 

[ljimbo423]

@ljimbo423 wow that is awesome. i am truly so happy to hear that. is this improvement a result of some treatment?

Yes, leaky gut and dysbiosis. I started with 25 days of Rifaximin. I have been taking herbal antibiotics daily for 8-9 months, along with glutamine, colostrum, a low carb diet. and probiotics.

I also take 3 grams of omega 3's and 500mg curcumin daily for gut inflammation and inflammation in general. I truly haven't felt this good, consistently for 15+ years!

Jim

 

[Daffodil]

Yes, leaky gut and dysbiosis. I started with 25 days of Rifaximin. I have been taking herbal antibiotics daily for 8-9 months, along with glutamine, colostrum, a low carb diet. and probiotics.

I also take 3 grams of omega 3's and 500mg curcumin daily for gut inflammation and inflammation in general. I truly haven't felt this good, consistently for 15+ years!

Jim

ah. yes leaky gut ...the disease is coming from the gut for sure. L-Glutamine is the ONLY supplement that i ever felt helped me. congratulations on your improvements! wonderful to hear some good news for a change

 

[pibee]

@pibee i didnt know what he charged in slovenia but most of the money he makes goes into research.
.

Research? Where did he ever publish research about the efficacy of his treatments? Even case studies, god forbid, double blind placebo.

I dont think he is into money, just think he is a bad doctor, doesn't follow science, doesn't cooperate with other ME researchers, and has way less people improving (is it 10%?) than placebo in Rituximab study (20-30% )...

250 eur is still affordable if you compare to what these USA CFS/ME doctors charge though.

we cant compare De Meirleir with USA doctors who actually follow science, and look at all possible causes while de meirleir pushes only his ideas about gut and bacterial infections.

 

[bostjan01]

What's the KDM clinic in Slovenia called?

 

[Daffodil]

Research? Where did he ever publish research about the efficacy of his treatments? Even case studies, god forbid, double blind placebo.

I dont think he is into money, just think he is a bad doctor, doesn't follow science, doesn't cooperate with other ME researchers, and has way less people improving (is it 10%?) than placebo in Rituximab study (20-30% )...



we cant compare De Meirleir with USA doctors who actually follow science, and look at all possible causes while de meirleir pushes only his ideas about gut and bacterial infections.

what are you talking about? which US doctors "follow sicence" with CFS? the ones who do this wont even treat it other than with antidepressants
lol every USA doctor pushes his own ideas...Montoya treats with antivirals, so did Lerner...Cheney charged ridiculous amounts of money....Peterson is all about Vistide or Ampligen....its the same story with everyone.

Clearly, you have a particular problem with DeMeirleir for some reason.

 

[Daffodil]

@bostjan01 I think you will have to contact them at the main clinic to find out:

Tel: +32 2 266 87 40
Fax: +32 2 266 87 50
E-mail: info@ehmb.be

 

[msf]

Research? Where did he ever publish research about the efficacy of his treatments? Even case studies, god forbid, double blind placebo.

I dont think he is into money, just think he is a bad doctor, doesn't follow science, doesn't cooperate with other ME researchers, and has way less people improving (is it 10%?) than placebo in Rituximab study (20-30% )...



we cant compare De Meirleir with USA doctors who actually follow science, and look at all possible causes while de meirleir pushes only his ideas about gut and bacterial infections.

As Daffodil suggested, your position on this is untenable.

 

[JES]

50% of population according to IDSA guidlines writer who is from Slovenia. Everyone here has had ticks in their life.

If that writer really has accurate information, it's a shocking figure. If 50% of the population carries the bacteria then it almost makes it pointless to test for Lyme, because as we know only a small fraction of those 50% are sick. The conclusion from this number would be that Lyme isn't the reason people get sick, there must be some other factors.

 

[Daffodil]

If that writer really has accurate information, it's a shocking figure. If 50% of the population carries the bacteria then it almost makes it pointless to test for Lyme, because as we know only a small fraction of those 50% are sick. The conclusion from this number would be that Lyme isn't the reason people get sick, there must be some other factors.

we have an inflammatory process going on and it is coming from somewhere....same story with 'chronic lyme' patients, I would imagine

 

[bostjan01]

Does anybody know if KDM takes insurance for people in Belgium? I'm wondering if I could get reimbursed by Slovenian insurance if I go see KDM.

 

[Daffodil]

Does anybody know if KDM takes insurance for people in Belgium? I'm wondering if I could get reimbursed by Slovenian insurance if I go see KDM.

No, I think he is considered a private doctor in Belgium....someone from Europe asked this before.

I don't know how it works for the lab tests...I suspect the lab might be considered private, too...I looked into this once before but I forgot what I found out. You can just email or call them in Brussels and ask.

xo

 

[Banana94]

I'm wondering what was treatment like for those who visited Kenny De Meirleir? Does he prescribe antivirals or rituximab also?

I have been looking at older posts and mostly found he was treating for Lyme disease. I'm myself positive for Lyme and already received treatment by an LLMD with no success and wouldn't like to receive it by KDM again.

He prescribed me additional to the ABX, nexavir and now isoprinosin. Both should have antiviral and immunmodulating properties. He didnt test me for viral infection, but I did some tests before which only showed past infections..
I dont think he prescribes Rituximab, he told once that this doesnt treat the cause. Also Ampligen not, same reason as rituximab..

 

[Rlman]

Yes, leaky gut and dysbiosis. I started with 25 days of Rifaximin. I have been taking herbal antibiotics daily for 8-9 months, along with glutamine, colostrum, a low carb diet. and probiotics.

I also take 3 grams of omega 3's and 500mg curcumin daily for gut inflammation and inflammation in general. I truly haven't felt this good, consistently for 15+ years!

Jim

how long did it take for you to start seeing improvements once you started the above treatments @ljimbo423?

 

[ljimbo423]

how long did it take for you to start seeing improvements once you started the above treatments @ljimbo423?

I started to notice benefits within a week or two. It wasn't a smooth ride though. I experienced times where I had significant die-off (a worsening of symptoms) from killing off the bacteria in my gut and PEM from overdoing it physically, with my new found energy.

It was around the 5-6 month mark, that I started seeing much more consistent relief in symptoms. I still have my off days but more often now, it's just a few hours.

The improvements are becoming more and more consistent month to month. I also want to note that I have been disabled with CFS since 1989, which I think is significant.

Having said that, it just goes to show, it's never too late to turn things around!

Jim

 

[Folk]

His consults are about 5-10 minutes. He has a room full of patients every morning. He probably look at 50 patients per day. He uses labs that are associated with him for VERY expensive and unproven tests. Thats a lot of money... He was even presecuted for not publishing his "discoveries". He always has "discoveries" he says he can't talk about untill it the "tests" are over and we never hear about it again.

 

[bostjan01]

I remember there is a thread about Kenny De Meirleir with a questionnaire that you're given at clinic about symptoms but can't find it. Could somebody post a link if you know to this thread or maybe upload image of questionnaire.

 

[unicorn7]

His consults are about 5-10 minutes. He has a room full of patients every morning. He probably look at 50 patients per day. He uses labs that are associated with him for VERY expensive and unproven tests. Thats a lot of money... He was even presecuted for not publishing his "discoveries". He always has "discoveries" he says he can't talk about untill it the "tests" are over and we never hear about it again.

I don't know everything about the guy and it could all be true what you're saying, but a lot isn't my experience.
I am always in there for a least 20 minutes and then he looks at my record and writes down my plan afterwards. So I don't think he can do more than 3 patients in an hour, for 80,- per visit. I have sat in that waiting room often a whole morning and there were definitely not 50 people in one morning.

I have no idea where he pays his staff from, because I got a meyers-cocktail for 60,-. I get the supplies from the pharmacist for 40,-, so they make a whopping 20,- for putting the infusion in my arm and letting me sit there for 45 minutes. If I go to a private place nearby, they charge me 150,--200,- for the same thing.

The tests he orders are expensive, because you have to pay for them yourself. If I do anything in a normal hospital, it's just as expensive, but I never see a bill, so I don't really care. The prices are pretty normal. With me, he does stool tests for microbiome and bloodtests for ammonia, prostaglandines, cytokines, what's exactly unproven about it?

I don't know if he is associated with the lab, no idea. I don't know anything about a prosecution. He does publish and is associated with a research institute in the USA.

 

[Hajnalka]

I remember there is a thread about Kenny De Meirleir with a questionnaire that you're given at clinic about symptoms but can't find it. Could somebody post a link if you know to this thread or maybe upload image of questionnaire.

http://forums.phoenixrising.me/index.php?threads/my-first-appointment-with-kdm.38707/#post-618610

 

[bostjan01]

I noticed that KDM does a lot of Lyme disease and coinfections testing and treatment along other things.

I've already done extensive testing for Lyme and coinfections. I had IgeneX panel from US and Infectolab (now BCA Labs?) from Germany all tests they offer done. It was over 2,000€. Tests were positive for Lyme, but CD57 count was normal which means Lyme isn't active. I was also positive for bartonella, coxsackie and yersinia. I went to LLMD and was treated for a while with heavy dose of antibiotics without any help. Antibiotics completely destroyed my gut flora and it took years to regain gut health. I had severe diarrheas for months following Lyme treatment. I personally do not think I have active Lyme.

I'm writing this because I'm wondering if I could tell KDM to not order these tests again and get Lyme treatment once again. Is he kind of person I could tell him that or he is not possible to reason with and would demand Lyme treatment again?