Kenny De Meirleir treatment

Helen

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Is he kind of person I could tell him that or he is not possible to reason with
He is definitey a person who carefully listens to you, and recommends tests and treatments based on that. I would suggest that you write down your questions before the appointment, and I´m sure you´ll get replies. I would wait with the questions until he has finished talking.
 

pibee

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I had IgeneX panel from US
a bit off topic, can you please tell me how you shipped blood to IgeneX, was it expensive and complicated from Europe?
Also Galaxydiagnostics, sent me brochure about shipping but it's so complicated.

I am considering this, because, I was high positive for Lyme via Elispot and CD57, and had some more specific symptoms like Bells palsy (although it can be from herpes virus too but it's much more common in Lyme). Just like you I did bunch of antibiotics, overall they made ME worse, but many neuropsychiatric symptoms, TMJ problems and neuropathies better, or even resolved, so I think this is definitive proof I had or still have bacterial infection.

But lately I am thinking if these bacterial infections are only significant in us just like viruses are, because of exhausted immune system, so consequence of autoimmunity (this would be my wishful thinking too).... so i will check igenex to see what's up.

If you had only worsenings from antibiotics, more antibiotics for gut dont sound like a good choice to me.
 
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Folk

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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.
http://www.ncf-net.org/forum/CallForResignation.htm
 

aquariusgirl

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No axe to grind here. Honest question... but that was 2002 and we've known about R NAse L since then and nothing has come of it? So what does that say about the significance of it?
 

Folk

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No axe to grind here. Honest question... but that was 2002 and we've known about R NAse L since then and nothing has come of it? So what does that say about the significance of it?
Well the point it's not about the quality of information but the unethical decision of witholding information.

@unicorn7 was defending him, and he has all the rights to do so, I just pointed facts. The prosecution and the fact he's associated with the labs he orders tests. His answer was he didn't know about that so I just showed.
 

msf

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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.
A falsehood! I do decry it! Also, you spelt it so badly it might have been persecuted, I which case I agree.
 

unicorn7

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I have read that page, but it's from a society right? Not a real legal prosecution? I had tried to find out what happened with that, but it's a really long time ago and I couldn't find anything.

I have the same question as aquariusgirl. Isn't that information in his book? The RNAse-L thing is pretty well known, I think a lot of people have dismissed it's importance, so I don't really get the point that he was trying to hide it and that that's the reason we don't have a solution fro ME/CFS yet. Seems a bit out there.

I know a dutch website that has a very good interview with him printed (its pretty old, I think 2007), and he talks about the whole RNAse-L theory there as well.

I don't know if he's financially gaining from RED-labs or not, but in his clinic and the prices there, I can't see any sign of wanting to make a lot of money of sick patients, to be honest I see the opposite.
 

msf

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Well the point it's not about the quality of information but the unethical decision of witholding information.

@unicorn7 was defending him, and he has all the rights to do so, I just pointed facts. The prosecution and the fact he's associated with the labs he orders tests. His answer was he didn't know about that so I just showed.
Perhaps you just don't know what the word means.
 
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a bit off topic, can you please tell me how you shipped blood to IgeneX, was it expensive and complicated from Europe?
Also Galaxydiagnostics, sent me brochure about shipping but it's so complicated.

I am considering this, because, I was high positive for Lyme via Elispot and CD57, and had some more specific symptoms like Bells palsy (although it can be from herpes virus too but it's much more common in Lyme). Just like you I did bunch of antibiotics, overall they made ME worse, but many neuropsychiatric symptoms, TMJ problems and neuropathies better, or even resolved, so I think this is definitive proof I had or still have bacterial infection.

But lately I am thinking if these bacterial infections are only significant in us just like viruses are, because of exhausted immune system, so consequence of autoimmunity (this would be my wishful thinking too).... so i will check igenex to see what's up.

If you had only worsenings from antibiotics, more antibiotics for gut dont sound like a good choice to me.

No, it wasn't complicated to ship to US. It was back in 2012 and if I remember correctly IgeneX demanded that a doctor requests test. This was really the hardest part. So I had to go to my GP and ask her to request test. I shipped through DHL. When tests were done they faxed it to my GP.
 

Folk

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A falsehood! I do decry it! Also, you spelt it so badly it might have been persecuted, I which case I agree.
I just meant prosecuted, 1 letter typo. My native language is portuguese do you speak any of it? we can try that. (or spanish) I'm guessing no.

He surely was persecuted too though, but with good reason.

I have the same question as aquariusgirl. Isn't that information in his book?
Yes he published on his book by $89.24 on Kindle or $172,95 Hardcover (talking about money....).

Still that's not how it works, you withold information unitl you publsih a book.
 

Lipac

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@Daffodil What kind of medication did he prescribe you to make you feel better?

I've been sick for 7 years now. My worst symptom being brain fog and fatigue. I was positive on a test for Lyme disease but really this doesn't mean that borrelias (Lyme bacteria) are causing symptoms because vast majority of people keep their Lyme bacteria at bay.

I was given combination of strong antibiotics which completely wiped out my gut flora I was having severe diarrheas and needed lots of time to repair my gut.


So I'm thinking if anyone here was given for example antivirals, rituximab or IVIG or anything else except antibiotics by KDM? What does he prescribe apart from antibiotics? Did he tell you he doesn't prescribe rituximab?
@bostjan01 I was sick so long and finally got (3 sets) of definitive Borrelia tests . My clinical picture fit ( acted like MS not FM, etc). I lived in two high Lyme areas since birth ( great lakes and Sweden's highest Lyme county). Many my age from school were getting sick around 40 .

However, Lyme treatments didn't help. My functional medicine Dr wouldn't give me more.

* I too now wonder if Lyme positivity is endemic in certain areas... and not my primary problem, but one of many. No one can say for sure.

And after 30 years, if it's second stage ( like syphilis, which studies DO show a parallel course of both diseases), antibiotics don't turn around the progression, or cardiomyopathy, or cns degeneration, etc.

At this point, I DO tell my Drs because it MAY be part of the clinical picture.
If I had latent TB, or had polio, I'd do the same.

But I won't try any more very $$ Lyme treatment.
Supportive therapies are the best, IMO.

I view it like post polio syndrome or syphilis or anything else that isn't effectively " cured" but goes on in later life to cause degeneration and disability.
Maintaining hormonal, cns, mitochondrial function; and limiting DNA damage and chronic inflammation are about the best I can do.
 
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Lipac

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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.
I live in Michigan. Independent testing 10 years ago showed among symptomatic and asymptomatic people around the Great Lakes ( Minnesota, Wisconsin, Michigan, Ontario Canada, )
90% tested positive on highly specific borellia Western Blot testing. The study is on the ILADS site.

People are getting MORE ill with chronic diseases ( like " probably ALS" or " something Autoimmune" ) than past generations.

I know people who died at 65 from chronic illness with no name, while thier mothers and aunts/ uncle's are Healthy at 85-100. This is SHOCKINGLY common- people from 40-60 more disabled than thier elderly parents.
It is my case.

Much has to do with how woodlands were managed in the 1960-70s, allowing for a POPULATION EXPLOSION of BORELLIA- CARRYING ANIMALS.
This was the case in the Northern US- when I lived in Sweden, it was the same practice, and they have a date as high as my state in the US.
I'm not sure how Central Europe managed forests and deer populations.

I have learned MUCH from Veterinarians, who know about disease epidemics decades before medical Drs.
The best Indicators of infection and disease rates, are to look at animal disease maps ( dogs, horses, cattle, sheep; but esp dogs and horses).

THOUGH IT'S KNOWN ( talk to a Veterinarian or Epidemiologist) almost nothing is written about TRANSMISSION BY BIRDS. They have carried BORELLIA- around the world. It's endemic among forestry workers in Australia. It's in Japan.

MANY PEOPLE HAVE GOTTEN IT IN NEW YORK CITY, WALKING IN CENTRAL PARK.
YOU DON'T HAVE THE BE IN THE WILD.

I am happy for those who get SWIFT treatment in the first year; though that is no guarantee it won't progress.

ALL OF US IN THIS AREA WHO HAVE IT, HAD weeks of ANTIBIOTICS AS CHILDREN OR TEENS. Acne treatments for 1-2 years should eradicate it.

Genetics, methylation, number of exposures, increasing virulence of the bacteria - all seem to have a correlation with re emergence, and severity.

So, yes the exposure/antibody production can be as high as 50%, or higher.

Historically, in the past almost EVERYONE in Europe tested positive for TB, and was exposed. Not all were Chronically Ill or died, but all were exposed and most were carriers.
Same with the plague, Influenza, etc.
 
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msf

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I just meant prosecuted, 1 letter typo. My native language is portuguese do you speak any of it? we can try that. (or spanish) I'm guessing no.

He surely was persecuted too though, but with good reason.



Yes he published on his book by $89.24 on Kindle or $172,95 Hardcover (talking about money....)

Still that's not how it works, you withold information unitl you publsih a book.
That's not what prosecuted means in English. When I speak Chinese I try to check any terms I'm not sure of, especially when someone questions what I said.
 

Folk

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That's not what prosecuted means in English. When I speak Chinese I try to check any terms I'm not sure of, especially when someone questions what I said.
Ok if language is your best argument I'm outta here. (I meant what I said)

Just gave my 2 cents on KDM ethics. Good luck to the OP.
 
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Do you know if Eurovolley hotel or any other offer lunch and dinners? I'm checking out hotels that they recommended me in email that Himmunitas sent me but they only offer breakfasts. I'd have to stay 2 nights in Belgium. How did you guys organize meals?
 

Sushi

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Do you know if Eurovolley hotel or any other offer lunch and dinners? I'm checking out hotels that they recommended me in email that Himmunitas sent me but they only offer breakfasts. I'd have to stay 2 nights in Belgium. How did you guys organize meals?
When I stayed there (a few years back) they had a buffet breakfast that was extremely generous and included more than enough ingredients to make a sandwich with for lunch (they were okay with that), so I took the sandwich with me to the clinic for lunch. Their restaurant had nice dinners and if you spoke to them earlier in the day, they would accommodate special dietary needs. There is also a sandwich and salad restaurant about a block away on the same side of the street.
 
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I am a patient of KDM for 1.5 years and I have positive LYME.
I do not get antibiotics from him, but only herbs.
I myself insisted on this, because I developed immunodeficiency, and I can not stand antibiotics.

Analyzes can not find my co-infections (suspect brucellosis, rickettsia, Bartonella), as I contracted in the tropics and possibly very exotic species.

Brucellosis was discovered by a non-traditional method (RIFE), I am good at baiting for treatment.

Also, I constantly take apitherapy, the doctor asks to continue
Hey @Olena, do you still do apitherapy? How has your progress been? Does KDM support you doing apitherapy?
 
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i should clarify... i was once at 50% but it fluctuates. right now, i am not doing well and still go through phases where i am barely 40%. this is because i was sick so long and also am in my 40's. if only i had had this treatment sooner.
Hi @Daffodil how are you doing right now? You're still seeing KDM?
 

Daffodil

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Hi @Daffodil how are you doing right now? You're still seeing KDM?
hi sam. i am no longer seeing KDM because I cannot afford to see him and pursue other avenues at the same time. I became intrigued by Jeff and jennifer's success so decided to look into craniocervical instability. since then, a few more people have gone on to have surgery, with mostly positive outcomes.

having said that, maybe because i have not kept up with my KDM visits and testing, i am down to 20 - 30% functioning, if that. i still take the meds he gave me 2 yrs ago ..