Terrible and expensive experience with Dr. Kenny De Meirleir

[YippeeKi YOW !!]

(Gonna have to use that phrase sometimes too... with your permission. )

Anytime m'dear .... and thank you for the thoughty kindness of your attributing it !!!!

 

[hmnr asg]

Well, if he pushed hard enough to leave a bruise, I'd guess that's why.


Seems like this would only happen if you have GI motility problems. There are tests for that if you want to pursue that route.

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.

Actually I have had ALL these tests, by real doctors, done by real labs, covered by my insurance. I didn't need any of this at all! I have been sick for 13 years so I have been around the block in terms of tests. I didnt need his "home-made" tests done by his company at all! if I had given a chance to consider the cost and check the type of tests I would have run for the hills.

Btw my fecal test showed lack of butyrate short chain fatty acids and a lack of growth of any Enterococcus family of bacteria.
So far nothing has really been found in any of my tests (like many of us). I think its time to stop wasting money and just hang in there until Rob Davis or someone else finds a cure. I have wasted enough money on quacks.

 

[hmnr asg]

And the state licensing board.

@YippeeKi YOW !! @Judee
I really don't want to go after him that hard. I just want my money back (and none of the results). I really cant afford this expense (several months of rent that i don't have!). I am afraid if i go too hard after him it might affect his ability to maybe help even one person. Maybe he didn't like me for a few reasons (I am a POC and he is an old belgian guy, maybe he just didn't like me and hence the blunt trauma to my abdomen and the rest of his behavior), but maybe he can help *somebody*, so i really don't want to risk ruining his career or chance doing so.

I think i should try again and reach out to them to see if they can help at least partially reimburse my blood test costs (and none of their results have been given to me, so no service has technically been rendered).

 

[wabi-sabi]

Actually I have had ALL these tests, by real doctors, done by real labs, covered by my insurance.

Wow! That just makes it even worse.

So far nothing has really been found in any of my tests (like many of us). I think its time to stop wasting money and just hang in there until Rob Davis or someone else finds a cure. I have wasted enough money on quacks.

That's my plan too.

 

[JES]

Doesn't sound like KDM has exactly advanced on his hypothesis about ME/CFS 😒... Gut bacteria has been his thing for the last ten or fifteen years at least.

Gut bacteria traveling up to the small intestine and colonizing there is not exactly a novel theory either as that's exactly what happens in SIBO. The way to diagnose it is typically via a breathing test. It sounds like nonsense that he thinks he can diagnose it simply by pressing your stomach and I'm sorry to hear the pain it caused.

SIBO is typically treated with rifaximin, which I think some of KDM's patients had success with. What I don't buy is the claim that it would be the cause of ME/CFS. ME/CFS typically develops after an acute infection and I think the bad bacteria and bacteria in the small intestine is a consequence that shows up maybe only years later.

If gut bacteria was the root cause, then treating the overgrowth should cure one permanently, but I reckon people who had success with antibiotics often relapse after the course. It makes more sense to me that SIBO is rather a symptom of ANS dysfunction, which itself causes poor gut motility and would alter what bacteria and where they are located in the gut. Perhaps a viral infection in the gut could also cause something like this.

 

[fraser9]

I have an appointment with KDM in August. I'm in two minds as to whether I should cancel it now.

 

[hmnr asg]

I have an appointment with KDM in August. I'm in two minds as to whether I should cancel it now.

so if you are ok with spending the money (around 4500$) and dont mind driving to Reno , then why not, We have all wasted so much time and money on this disease with nothing to show for it. And I like you to come back and share your story here. Maybe I was an outlier and maybe he was a great doctor and maybe he just didnt like me.
the only thing im concerned about is the way he will push on your abdomen,. I think the solution is either to tell him it hurts the first time he pushes down (if you say it doesnt hurt he might make sure he pushes again hard enough to make it hurt). Or you tell him downright that you rather not have that examination because you have abdominal pain. Or just brace yourself for it, Otherwise I see no harm in it,

the one thing he might be able to provide you with (not sure because its not available in the US) is filgotinib, I have a feeling it might be useful for CFS (but its just based on my own theory).
Also please read the other stories about him on the cfs subreddit and no this forum, please dont be deterred just by once bad experience.

 

[fraser9]

so if you are ok with spending the money (around 4500$) and dont mind driving to Reno , then why not, We have all wasted so much time and money on this disease with nothing to show for it. And I like you to come back and share your story here. Maybe I was an outlier and maybe he was a great doctor and maybe he just didnt like me.
the only thing im concerned about is the way he will push on your abdomen,. I think the solution is either to tell him it hurts the first time he pushes down (if you say it doesnt hurt he might make sure he pushes again hard enough to make it hurt). Or you tell him downright that you rather not have that examination because you have abdominal pain. Or just brace yourself for it, Otherwise I see no harm in it,

the one thing he might be able to provide you with (not sure because its not available in the US) is filgotinib, I have a feeling it might be useful for CFS (but its just based on my own theory).
Also please read the other stories about him on the cfs subreddit and no this forum, please dont be deterred just by once bad experience.

Thanks for your reply. It was helpful. I've decided to go ahead with the appointment.

 

[hmnr asg]

Thanks for your reply. It was helpful. I've decided to go ahead with the appointment.

,Great ! But please come back and share your experience also, so that others can benefit from your experience as well. You can just continue the thread.
Good luck,!

 

[hmnr asg]

Update: The office of KDM wouldnt reply to me about refunding me the charges, so I had to try to go through the credit card company to reverse the charges.
However he ended up prevailing in the end and I was not able to reverse the charges. The credit card company said that he has rendered the services that he had offered.
This is nonsense as my original thread explains, he never told me how much I would have to pay and they made me sign all these forms before I was told the total amount and even the total amount was incorrect.

But me careful because this guy is very litigious and has set of several LLCs and has set up a pretty effective system to scam patients. If you give him any money, consider it gone, because you will not be able to see a dime of that again.

 

[hmnr asg]

Update2:
One of the charges was successfully reversed. I believe KDM might be going after *me* now legally.

I got an email from Annette Whittemore‌ ‌(the head of Whittemore Peterson Institute AKA WPI) saying that it is inappropriate for me to contact them regarding this issue and that they have no legal authority over the CTM Associates (one of the several LLCs that KDM has set up).

Also she said to only deal with KDM *and his legal counsel* from now on. I didn't know any legal counsel was involved, but it seems they are? Does this mean KDM might be lawyering up against me?

It seems very strange that they are completely distancing themselves from KDM since he is practicing out of their office and their website includes him and his services. I only cc'ed WPI in my communications so they can be aware of the situation. I was not expecting them to help me but it seems that they think it's "inappropriate" (that is the exact word she used in her email).

If you go to their website (https://www.wpi.ngo/medical) this "clinic at WPI" is the office of KDM, so how can they say it's inappropriate for me to even include them in the communication or try to contact them regarding this issue?

 

[fraser9]

All the costs for my appointment have been presented to me before hand in a detailed list sorry to hear your experience wasn't as transparent.

 

[hmnr asg]

All the costs for my appointment have been presented to me before hand in a detailed list sorry to hear your experience wasn't as transparent.

When was your appointment? Maybe after my complaint they changed their policy ?
Not only did I not get the breakdown ahead of time , when it was given to me on the spot to sign it was about 1000 lower than what they actually charged me.

Also, two more questions: did you test positive on their borrelia test ? Also, has he been able to help you in any way so far ? What medications did he prescribe?
Thank you ! And I'm happy you didn't have to go through what I went (and currently ) going through.

Edit: you are the person who asked about going in August ! My dang brain fog ! Sorry. I think they probably changed it after what happened with me. Also I have been reading about the laws around medical billing and what they did with me (not disclosing the cost ahead of time ) is actually illegal. So I'm glad they've gotten their things together.

 

[wabi-sabi]

It seems very strange that they are completely distancing themselves from KDM since he is practicing out of their office and their website includes him and his services.

I wish I had some explanation of this to give. My best guess is that they don't want to be associated with KDM's shenanigans and are worried about legal implications for themselves. Still a strange choice to say "inappropriate" though.

what they did with me (not disclosing the cost ahead of time ) is actually illegal.

At least you got him there!

 

[Hip]

It seems Dr Kenny De Meirleir is forever controversial, and someone who is either loved or hated, perhaps depending on whether his treatments helped or not (which in turn might depend on whether you are happy to part with your money for the often high prices of treatment).

In the interests of balance, here is one recent positive story I read about KDM's treatment, which allowed the ME/CFS patient to go back to work.

 

[Mouse girl]

So sorry you got taken in by yet another vile human seeing huge $ signs on the head of desperate and vulnerable patients.
Yeah, you can't get your money back due to having the blood work done, seeing him and signing papers. It will only make your feel more victimised and angry if you keep up a losing fight about this.


Dr Peterson left that place decades ago? already. He couldn't get his name off of their organization although he tried.

Fromwhat I remember, that place fell apart very quickly and included the whole nonsence and insanity of that whack job reseracher who is a conspiracy nut. I forget her name. I don't know weather she lost her mind or if she was hiding how her brain worked when she got the job.

It's been my experience that the best docs are the ones who look out for you financially and won't do expensive tests or experimental stuff. The two excellent docs i've had are 100% real docs, very well respected in the MD community, not woo-woo or experimental and base their work on science and also take into account the great financial burdens of this illness and the disability it causes.

 

[Stretched]

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.

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.

I hate to hear that a fellow PWC has had such a regrettable experience after having sought him out in good faith at considerable expense.

Medicine had its heyday in the 1950’s polio era with hard work in overcoming the proliferation of the ‘iron lung.’ Dr Jonas Salk, et al were hailed as hero’s. Unfortunately, the whole aura of medicine has gone downhill since for all but the most VISIBLE of conditions. Worse still, as Hillary Clinton noted, the system is broken, often protecting the very ones who should be expunged.

 

[Stretched]

Update: The office of KDM wouldnt reply to me about refunding me the charges, so I had to try to go through the credit card company to reverse the charges.
However he ended up prevailing in the end and I was not able to reverse the charges. The credit card company said that he has rendered the services that he had offered.
This is nonsense as my original thread explains, he never told me how much I would have to pay and they made me sign all these forms before I was told the total amount and even the total amount was incorrect.

But me careful because this guy is very litigious and has set of several LLCs and has set up a pretty effective system to scam patients. If you give him any money, consider it gone, because you will not be able to see a dime of that again.

If an enterprise is doing business over state lines it is likely subject to FTC governance. You might want to check there about piercing the illusive shields of protection.

 

[hmnr asg]

Fromwhat I remember, that place fell apart very quickly and included the whole nonsence and insanity of that whack job reseracher who is a conspiracy nut. I forget her name. I don't know weather she lost her mind or if she was hiding how her brain worked when she got the job.

You are speaking of Judy Mikovits who wrote that damn XMRV paper, got thrown in jail and came out and ended up creating the "Plandemic" documentary:
https://abcnews.go.com/Health/Welln...searcher-jailed-controversy/story?id=15076224
https://www.liebertpub.com/doi/10.1089/AID.2020.0095

Also not only that, another scandal involved Harvey Whittemore, you can just see all the scandals he was involved in by doing a google search or just checking his wikipedia search:
https://en.wikipedia.org/wiki/Harvey_Whittemore
He went to prison for two years because he was using the funds from the foundation to give kickbacks to the late Harry Reid. (lots of news articles on it).

Honestly I have no idea how the Whittemore Peterson Institute survived all their scandals and are still allowed to get money in the name of CFS research.

If an enterprise is doing business over state lines it is likely subject to FTC governance. You might want to check there about piercing the illusive shields of protection.

Yeah, you can't get your money back due to having the blood work done, seeing him and signing papers. It will only make your feel more victimised and angry if you keep up a losing fight about this.

After the stern message sent to me by Annette Whittemore I completely stopped pursuing this. I actually went back in the PR forum and saw instances of them intimidating a blogger and threatening legal action. They are very litigious and I, as a very ill person stand zero chance of surviving a legal dispute with them. I even deleted my negative review on google maps. I am genuinely scared they will still come after me.

 

[Bufeyberry]

😥😥😥