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Terrible and expensive experience with Dr. Kenny De Meirleir

hmnr asg

Senior Member
Messages
565
The following is my awful experience with a so called "CFS expert" known as KDM (Kenny Leo De Meirleir). I share my story so that maybe I can save some of you from wasting thousands of dollars and potentially being hurt by this crook.

Here it goes (sorry folks for the long story):
Despite reading a lot of negative reviews about him, out of sheer desperation I went to his clinic in Reno, Nevada. He practices his scam out of the Whittemore Peterson Institute (the folks who brought us the XMRV "discovery").
The whole thing felt like a scam from the beginning, but I went along with it hoping just "maybe" he can help.

Initially they gave me a brochure that said his fee is 490$ (payable by cash or credit card) and that potentially I have to pay another 200$ for food allergies. So I thought the worst that will happen is that I lose around 700$ (boy, was I wrong!).
I drove all the way there which cost me a lot more money, and energy (and I don't have much of either).

So during the visit I explain my problem and without really listening more than a minute or two he tells me he knows exactly what is wrong with me. He asked me to lay down on a bed and he proceeds to touch my abdomen and asks me if it hurts in that specific spot, to which i answered "no". He then proceeds to push his finger as hard as he could (almost a stabbing motion) which made me yell out from the pain. At this point he goes: "yes, I knew it, exactly, it hurts right there" (duh!). Then he proceeds to tell me the cfs is caused by the gut bacteria and rambles on for more than an hour about himself and his grievances against certain individuals in belgium etc. At this point I was in so much pain and I was starting to crash and I just wanted out of there.

When I thought the appointment is finished he says he will have to do some blood work. I assumed he means by a lab (like Quest or LabCorp). His receptionist made me sign a list of blood tests and asked me to sign it (which i did). He only THEN gives me the subtotal of 3200$ ! I was a bit confused at this point why they're charging me and not the lab (turns out HE is the lab!). I should have left right there and then but I gave my credit card info because I was very much confused and didnt know what else to do.

Then KDM himself proceeds to do the blood draw in his office, with a needle that really didn't seem like it came out of a sterile packaging. Also the needle was just dangling in my arm the whole time and causing pain. I have given blood on many occasions and this was the weirdest experience.

Afterwards I go to my hotel and had difficulty falling asleep from the sheer pain in my abdomen. The next day i had a large bruise on my lower abdomen and I was having trouble "going" and was experiencing severe bloating (but not being able to pass any gas).

I drove back and the next few days my pain got even worse. Also, I noticed that they withdrew 3950$ from my credit card (and not the 3200$ that they had told me).
I emailed their office and the receptionist said he had made a mistake in calculating the sum, and that the amount they withdrew is the correct one. But THEN the next week another 370$ charge was withdrawn from my account.

So at this point i'm out 4000$ + 370$ that were charged to my credit card by an entity called "RED RENO LLC" And "R.E.D. Laboratories". When I searched around they showed up as legal entities that he had set up in Reno to funnel money to himself via these nonsensical blood tests.

I asked their office for a refund at this point, to which they gave no response. Also I didnt go urgent care until after two weeks because I was in such a major crash. I still had a bruise at that spot but the doctor there really couldn't believe when I said a "doctor" had done this to me and kept pressing me to tell her if I had been abused at home.

This is my story and I regret the day I walked in to this guy's "clinic". I still have abdominal pain and bloating and I am out of almost 5000 USD (which is a lot of money for me). And all I got for it is a script for mestinon and vitamin B shots (I already take mestinon and vitamin B).

I really think KDM, with the full knowledge of this Whittemore Peterson Institute is engaged in embezzling vulnerable patients out of thousands of dollars per person.
 
Last edited:

Osaca

Senior Member
Messages
344
Yes that is my understanding also, they seem to have parted ways.
It's what I gather if I look at the headlines on the internet. I will dig a bit deeper once I have the energy. I would certainly not hope that one of our leading scientists is cooperating with charlatans (which it seems he isn't).
 

Wayne

Senior Member
Messages
4,376
Location
Ashland, Oregon
I share my story so that maybe I can save some of you from wasting thousands of dollars and potentially being hurt by this crook.

Wow @hmnr asg -- What a story! I'm sorry you had to deal with so much pain on so many levels, physical, emotional, financial, etc. Thanks so much for sharing your story. I'm sure it will serve others in the future who consider going to him, but decide to do a search for his name in a thread title here on PR before proceeding. I hope your recovery is moving forward, and will soon be in a place where you can put this all behind you. -- Blessings
 

YippeeKi YOW !!

Senior Member
Messages
16,064
Location
Second star to the right ...
The following is my awful experience with a so called "CFS expert" known as KDM (Kenny Leo De Meirleir). I share my story so that maybe I can save some of you from wasting thousands of dollars and potentially being hurt by this crook.
What a nightmare, and how carefully calibrated to this community's weaknesses: difficulty focusing, cog fog, physical exhaustion ... all potentially assisting the fraud in every possible way.

I'm deeply sorry that you had to go thru this, and as @Zebra wrote above, I could easily see it happening to me, in the same way.

Once you've recovered enough energy, would it be possible to enter a formal complaint aginst deMerlier and R.E.D., starting with that relative joke, the Better Business Bureau, and continuing on thru the Nevada Secty of State and/or Atty Gen'l? I doubt that it would be the first time they've heard his name ....

Take care of yourself, and know that this could have happened to any one of us and has nothing to do with any failing on your part.

And thank you soooooo much for the warning .... you'll never know how many members here, both current and future, you've saved from the same extortionate fate :nervous: :nervous: :hug::hug::trophy: ......
 

hmnr asg

Senior Member
Messages
565
So sorry you had to endure this, and the price tag seems outrageous. Did he say what bacteria he's suspecting in particular?
He was basically painting a picture that seems to be the same as most leaky gut theories. He said he will do a podcast at some point in the future and discuss his findings.
He said the bad bacteria will travel from the large intestine up to the small intestine and cause immune system issues (and thats where he pushed, where he thought my small intestine will connect to my big intestine, not sure why it should hurt in the specific spot).

He said the effects on the immune system are downstream from the gut and he will only address them if the blood tests warrant them.
Also he talked a lot about Lipopolysaccharides (LPS).
In addition he also gave a fecal test that he conducts in his own lab again. I told them I dont want any of the results and I just want a refund but they sent me the results of the fecal tests nonetheless (no blood test results though).
The fecal test results were all negative (I have attached it to this message).

Redlabfecal2.jpg
 

hmnr asg

Senior Member
Messages
565
What a nightmare, and how carefully calibrated to this community's weaknesses: difficulty focusing, cog fog, physical exhaustion ... all potentially assisting the fraud in every possible way.

I'm deeply sorry that you had to go thru this, and as @Zebra wrote above, I could easily see it happening to me, in the same way.

Once you've recovered enough energy, would it be possible to enter a formal complaint aginst deMerlier and R.E.D., starting with that relative joke, the Better Business Bureau, and continuing on thru the Nevada Secty of State and/or Atty Gen'l? I doubt that it would be the first time they've heard his name ....

Take care of yourself, and know that this could have happened to any one of us and has nothing to do with any failing on your part.

And thank you soooooo much for the warning .... you'll never know how many members here, both current and future, you've saved from the same extortionate fate :nervous: :nervous: :hug::hug::trophy: ......
I am planning to. The part that hurts the most is that they didn't even acknowledge my email even though I cc'ed the receptionist of the Whittemore Peterson Institute and asked to speak to Anette (the new head now). Nothing in return! no email from KDM, his receptionist or the institute people. And in my email I just asked for a refund of the blood tests (the visit fee be damned, he did spend more than an hour blabbing about his colleagues after all).
 

hmnr asg

Senior Member
Messages
565
So sorry you had to endure this, and the price tag seems outrageous. Did he say what bacteria he's suspecting in particular?
Also one of the main reason I visited him is that I heard he has given Filgotinib (Jyseleca) to his patients and some have had success. There are some mentions of this medication on the forum ( https://en.wikipedia.org/wiki/Filgotinib ).
The medication is a JAK1 inhibitor that is not approved by the FDA in the US and is pretty expensive (not nearly as expensive as his quack blood tests though). And I just thought he might be able to help me with it. But he barely let me get a word out and when I finally said it he said that it all depends on the outcome (which I later realized he means the blood tests).
Edit: my source on the success of filgotinib is not very reliable and this was just one person's testimony. So i really was taking a chance and didnt really have strong evidence on why this would be the key to my recovery.
 
Last edited:

Judee

Psalm 46:1-3
Messages
4,540
Location
Great Lakes
Once you've recovered enough energy, would it be possible to enter a formal complaint aginst deMerlier and R.E.D., starting with that relative joke, the Better Business Bureau, and continuing on thru the Nevada Secty of State and/or Atty Gen'l? I doubt that it would be the first time they've heard his name ....
And the state licensing board.
 

wabi-sabi

Senior Member
Messages
1,550
Location
small town midwest
(and thats where he pushed, where he thought my small intestine will connect to my big intestine, not sure why it should hurt in the specific spot).
Well, if he pushed hard enough to leave a bruise, I'd guess that's why.

He said the bad bacteria will travel from the large intestine up to the small intestine and cause immune system issues
Seems like this would only happen if you have GI motility problems. There are tests for that if you want to pursue that route.
He said the effects on the immune system are downstream from the gut
That's a possibility... but it could also be that immune problems are driving neuro problems which are driving the gut problems in the form of dysautonomia.

The calprot, FOB, transferrin and lactoferrin are all looking for blood in your stool, not infections per se. There are lots of reasons why you might have blood in the stool (you should talk to a real doctor about this if you're worried), but it can go with things like colon cancer or IBD. It's good to know you don't have blood, but it's not all that relevant to ME/CFS as far as I know. There are also better tests for colon cancer, if you're an age to get tested for that. No cancer doc would do this set of tests and then tell you you don't have it.

Cryptosporidium is a parasite that you get from drinking contaminated water, say swimming in a dirty pond. Giardia is similar. Both cause dramatic diarrhea a few days after drinking the pond water, so it's likely you would remember and connect the two events. these diseases are also not magic or rare, so any normal doctor would already have tested you for them. You surely don't need to see an ME/CFS specialist for those tests. Entamoeba is also usually caught by drinking contaminated water and is rare outside developing countries. You can find all this stuff on CDC website if you'd like more details.

Basically, he tested you for things that an infectious disease doc would test you for if you told her "Doc I've got this horrible case of diarrhea that's so bad I'm dehydrating, and it all started after a trip to the lake when I fell off the boat into the water". I'm betting that's not how your ME/CFS started and if you had said this to your doc she'd have given you these tests already. They're certainly not about ME/CFS. The docs that do think ME/CFS starts with a GI infection mostly point at GI viruses, not parasites and amoebas.

And hey, if ME/CFS is a nonspecific response to any infection (mold, enterovirus, mono, COVID, etc), then fixating on intestinal parasites is slightly silly. Any rate, they don't seem to be an issue for you.
 
Messages
53
(and thats where he pushed, where he thought my small intestine will connect to my big intestine, not sure why it should hurt in the specific spot).
Tenderness in the lower right abdomen is characteristic of Yersinia Enterocolitica infection. This bacteria can cause chronic infection with all kinds of GI and systemic symptoms, and is totally neglected by doctors in the US and elsewhere. I do not approve of KDM's methods or costs, but he does look for Yersinia and treats it if found. Also, if you do have it, taking an immune suppressor like Filgo would be a bad idea.
 

Seadragon

Senior Member
Messages
809
Location
UK
The following is my awful experience with a so called "CFS expert" known as KDM (Kenny Leo De Meirleir). I share my story so that maybe I can save some of you from wasting thousands of dollars and potentially being hurt by this crook.

Here it goes (sorry folks for the long story):
Despite reading a lot of negative reviews about him, out of sheer desperation I went to his clinic in Reno, Nevada. He practices his scam out of the Whittemore Peterson Institute (the folks who brought us the XMRV "discovery").
The whole thing felt like a scam from the beginning, but I went along with it hoping just "maybe" he can help.

Initially they gave me a brochure that said his fee is 490$ (payable by cash or credit card) and that potentially I have to pay another 200$ for food allergies. So I thought the worst that will happen is that I lose around 700$ (boy, was I wrong!).
I drove all the way there which cost me a lot more money, and energy (and I don't have much of either).

So during the visit I explain my problem and without really listening more than a minute or two he tells me he knows exactly what is wrong with me. He asked me to lay down on a bed and he proceeds to touch my abdomen and asks me if it hurts in that specific spot, to which i answered "no". He then proceeds to push his finger as hard as he could (almost a stabbing motion) which made me yell out from the pain. At this point he goes: "yes, I knew it, exactly, it hurts right there" (duh!). Then he proceeds to tell me the cfs is caused by the gut bacteria and rambles on for more than an hour about himself and his grievances against certain individuals in belgium etc. At this point I was in so much pain and I was starting to crash and I just wanted out of there.

When I thought the appointment is finished he says he will have to do some blood work. I assumed he means by a lab (like Quest or LabCorp). His receptionist made me sign a list of blood tests and asked me to sign it (which i did). He only THEN gives me the subtotal of 3200$ ! I was a bit confused at this point why they're charging me and not the lab (turns out HE is the lab!). I should have left right there and then but I gave my credit card info because I was very much confused and didnt know what else to do.

Then KDM himself proceeds to do the blood draw in his office, with a needle that really didn't seem like it came out of a sterile packaging. Also the needle was just dangling in my arm the whole time and causing pain. I have given blood on many occasions and this was the weirdest experience.

Afterwards I go to my hotel and had difficulty falling asleep from the sheer pain in my abdomen. The next day i had a large bruise on my lower abdomen and I was having trouble "going" and was experiencing severe bloating (but not being able to pass any gas).

I drove back and the next few days my pain got even worse. Also, I noticed that they withdrew 3950$ from my credit card (and not the 3200$ that they had told me).
I emailed their office and the receptionist said he had made a mistake in calculating the sum, and that the amount they withdrew is the correct one. But THEN the next week another 370$ charge was withdrawn from my account.

So at this point i'm out 4000$ + 370$ that were charged to my credit card by an entity called "RED RENO LLC" And "R.E.D. Laboratories". When I searched around they showed up as legal entities that he had set up in Reno to funnel money to himself via these nonsensical blood tests.

I asked their office for a refund at this point, to which they gave no response. Also I didnt go urgent care until after two weeks because I was in such a major crash. I still had a bruise at that spot but the doctor there really couldn't believe when I said a "doctor" had done this to me and kept pressing me to tell her if I had been abused at home.

This is my story and I regret the day I walked in to this guy's "clinic". I still have abdominal pain and bloating and I am out of almost 5000 USD (which is a lot of money for me). And all I got for it is a script for mestinon and vitamin B shots (I already take mestinon and vitamin B).

I really think KDM, with the full knowledge of this Whittemore Peterson Institute is engaged in embezzling vulnerable patients out of thousands of dollars per person.

So sorry you went through this. And lost a lot of money too. Try not to blame yourself for being desperate to get better though, it's understandable!

There have been quite a few members here in the not too distant past warning against KDM who had bad experiences with him and also lost a lot of money.

Several members said they also got worse after following his treatments.

Hugs xxx
 
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