Severe post Lyme ME/CFS patient achieves full remission after Taymount FMT

[sam.d]

Hey guys, just wanted to jump in and report that a dutch vlogger suffering from severe chronic Lyme has achieved full remission after having an FMT done at Taymount. This after being on the brink of committing euthanasia out of sheer desperation, her situation was THAT bad.

Article in dutch: https://www.volkskrant.nl/wetenscha...redde-naar-eigen-zeggen-haar-leven~b3d34bfeb/

Can you guys comment how risky doing an FMT is?
Did she just get lucky?
KDM told me at my latest consultation that doing FMT is like russian roulette, there is a high chance that you could suddenly turn obese or something like that because of accidentally transplanting bacteriophages that are mismatched with your body.

 

[YippeeKi YOW !!]

@sam.d

KDM told me at my latest consultation that doing FMT is like russian roulette, there is a high chance that you could suddenly turn obese or something like that because of accidentally transplanting bacteriophages that are mismatched with your body.

That's not entirely impossible, but I would think that your natural biome would contain an FMT in favor of your more natural state, hopefully without negating the benefits.

Would it be possible to name an FMT donor, someone in excellent health from your own immediate family?

But I have no idea how to start that conversation. However, it might be worth a thought.

 

[Bansaw]

I dont think FMT is allowable in some US States (like mine).
On another question - is there a gut bacteria test you can take that will indicate that you might be likely to benefit from FMT?

 

[YippeeKi YOW !!]

@Bansaw @sam.d
I've read a fair amount about people doing DIY FMT's, which they say is fairly gross, but generally works.

And again, I have no idea how that conversation would start, either .....

 

[Thinktank]

I'm a bit lazy today so i translated a part of the article into English with google translate.

In the summer of 2016 her Lyme is finally declared cured. She is still lifeless, shivery and unable to do anything, develops chronic intestinal complaints and can hardly eat anything without being bothered by it. She tries all kinds of medication, steals one after the other diet, tries various supplements and even psychotherapy. Nothing helps.

The cause of her complaints is most likely in her intestines: the months of antibiotics have severely disrupted the intestinal bacteria, her gut microbiome, causing her digestive system to falter and harmful bacteria to play freely - with consequences throughout her body. "At one point I said to my parents: I do not know if I want to continue living in this way."

Coincidence? All (ex)patients of KDM i've spoken with were told their lyme was either "cured" or no longer "active", in 2016, then they were all told the problem now relied in their gut.

That whole lyme diagnosis by KDM is pure and utter nonsense. What i'm reading is that the poor girls' body and intestines were completely wrecked by years of heavy doses antibiotics for OVERDIAGNOSED lyme disease, she never had lyme disease to begin with. Post-lyme syndrome is not cured by a faecal matter transplant.
I'm very happy for her, but no way she had lyme disease. My interpretation is that KDM wrecked her health and she needed a transplant to have her intestinal microbiome "repaired".

Sorry for repeating myself over and over on this forum but people should know KDM's treatment is not without risk.
The exact same thing happened to me, first i was diagnosed with lyme disease by KDM and treated with years of heavy antibiotic doses. Then medio 2016 i was told the borrelia was no longer active in my body and the problem suddenly relied in my guts.

From mass-diagnosing patients with lyme disease to mass-diagnosing patients with "gut problems". KDM is completely untrustworthy in my opinion. What happened to ME = lyme? Any apology from KDM for mistreating patients as guinea pigs? .... i don't think so. He should have his medical license revoked, and that's the end of it.

 

[unicorn7]

https://www.google.nl/amp/s/www.bos...e-patients-frustration-but-new-hope/803763936

There are more stories like this

 

[YippeeKi YOW !!]

Sorry for repeating myself over and over on this forum but people should know KDM's treatment is not without risk.
The exact same thing happened to me, first i was diagnosed with lyme disease by KDM and treated with years of heavy antibiotic doses. Then medio 2016 i was told the borrelia was no longer active in my body and the problem suddenly relied in my guts.

@Thinktank
You speak from the unique and unassailable perspective of someone who was subjected to this seriously unbelievable medical recklessness, disregard, and malfeasance. If you have to rent a rooftop to shout it from, you're entitled. You're doing a singular and important human service, and I thank you for it, and applaud you.

He should have his medical license revoked, and that's the end of it.

Yeah, well, good luck with that. Doctors circle the wagons and protect the offender, in the full and certain knowledge that they could well be next in the crosshairs. It would be nice though.

Thought you might enjoy this, though you robably have already read it. But just in case:

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

 

[Belbyr]

https://www.google.nl/amp/s/www.bos...e-patients-frustration-but-new-hope/803763936

There are more stories like this

Great news report

 

[sam.d]

The exact same thing happened to me, first i was diagnosed with lyme disease by KDM and treated with years of heavy antibiotic doses. Then medio 2016 i was told the borrelia was no longer active in my body and the problem suddenly relied in my guts.

Which antibiotics specifically?
I have experienced major energy improvements so far with KDM's treatment. Now trying to improve my gut, but my gut was already severely broken even before I started with KDM.

 

[Thinktank]

Which antibiotics specifically?
I have experienced major energy improvements so far with KDM's treatment. Now trying to improve my gut, but my gut was already severely broken even before I started with KDM.

IV ceftriaxone
IV azithromycine
Doxycycline
Tetracycline
Tinidazole
Metronidazole
Ornidazole
Cefuroxime
Clarithromycine
Minocycline
Vancomycine
Rifaximine
+1 more antibiotic which i forgot the name of.

Besides that lots of experimental unproven stuff that made me really sick like GcMAF.

 

[Thinktank]

@Thinktank
You speak from the unique and unassailable perspective of someone who was subjected to this seriously unbelievable medical recklessness, disregard, and malfeasance. If you have to rent a rooftop to shout it from, you're entitled. You're doing a singular and important human service, and I thank you for it, and applaud you.


Yeah, well, good luck with that. Doctors circle the wagons and protect the offender, in the full and certain knowledge that they could well be next in the crosshairs. It would be nice though.

Thought you might enjoy this, though you robably have already read it. But just in case:

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

Thank you. I know of a few ME-patients who are even worse off than me, being bedbound or in a wheelchair because of KDM's "lyme treatment". I still have contact with some of them, it's terrible.

But i don't want to hijack this threat, back to the amazing recovery of this girl.

 

[YippeeKi YOW !!]

Besides that lots of experimental unproven stuff that made me really sick like GcMAF.

@Thinktank
Wow. Just...... wow!!!

 

[sam.d]

@Thinktank
unbelievable list
As far as antibiotics, I've only taken rifaximine & samento/banderol/cumanda protocol. Both of which helped improve my illness tremendously (I was almost 100% bedbound before starting with KDM).

Sad to hear the treatment was so bad for you and so many others.
I only got convinced to go to KDM because my friend's mom achieved full remission from his treatment (and has kept in full remission for 15+ years now). But it's horrible to hear the opposite stories. And I can understand how it becomes easy to demonize him.

Re the dutch girl, she was in fact bitten by a tick though, after which her illness started.

 

[Hip]

Hey guys, just wanted to jump in and report that a dutch vlogger suffering from severe chronic Lyme has achieved full remission after having an FMT done at Taymount.

It seems that this FMT treatment was given on 4 June 2018, which is about 8 months ago. So the fact that the full remission is still holding after 8 months is good news for this girl, because I read that when KDM tried FMT experimentally some years ago, he found that the benefits would only last for around 10 weeks before the bad bacteria grew back again.

So it seems like she might have just got lucky. Though there is also this notion of "superdonors", which are donors whose fecal material has a track record of helping more patients improve or recover than other donors. Perhaps she (either knowingly or unknowingly) received a transplant from a superdonor.

Whether the Taymount Clinic actually keeps track records of the success rate of its various donors against various diseases, in order to identify possible superdonors, I don't know. There are no doctors or researchers at the Taymount Clinic, they are simply run as a business by one man and his wife.

It might be an idea to contact them, and ask if they do tract the success rate of their various donors.


3 ME/CFS patients on this forum who were treated at Taymount (here, here and here) did not mention much about a successful outcome.


By the way, the Taymount Clinic showed quite a lack of compassion when the daughter a forum member became too ill to receive an FMT she was scheduled to get at Taymount, and so had to cancel. Rather than refunding the money, or providing a partial refund, Taymount kept all of the £4000 they charge. See that story here.

 

[perrier]

At the time we were at Taymount there was no doctor on the staff. Be careful. Be careful.

 

[sam.d]

It seems that this FMT treatment was given on 4 June 2018, which is about 8 months ago. So the fact that the full remission is still holding after 8 months is good news for this girl, because I read that when KDM tried FMT experimentally some years ago, he found that the benefits would only last for around 10 weeks before the bad bacteria grew back again.

So it seems like she might have just got lucky. Though there is also this notion of "superdonors", which are donors whose fecal material has a track record of helping more patients improve or recover than other donors. Perhaps she (either knowingly or unknowingly) received a transplant from a superdonor.

Whether the Taymount Clinic actually keeps track records of the success rate of its various donors against various diseases, in order to identify possible superdonors, I don't know. There are no doctors or researchers at the Taymount Clinic, they are simply run as a business by one man had his wife.

It might be an idea to contact them, and ask if they do tract the success rate of their various donors.

3 ME/CFS patients on this forum who were treated at Taymount (here, here and here) did not mention much about a successful outcome.

By the way, the Taymount Clinic showed quite a lack of compassion when the daughter a forum member became too ill to receive an FMT she was scheduled to get at Taymount, and so had to cancel. Rather than refunding the money, or providing a partial refund, Taymount kept all of £4000 they charge. See that story here.

Thanks for your reply @Hip !
For now I will certainly hold off on going for an FMT due to the risks, on all levels. I read that Taymount does not disclose anything regarding their donors.

I've been reading up on the development of Filgotinib though (the JAK inhibitor that KDM talks about, which I discovered through this highly interesting post). I'll try and hold on to my current treatment until that comes out.

 

[Research 1st]

Guys, folk making bold claims of KDM and mass misdiagnosis of his patients won't have much of an effect on his popularity to the global PWME community who will always find KDM's insight helpful in regaining some physical function back, with a subset finding him very useful or the exact oppposite admittedly.

The reality is many patients labelled with CFS, ME or Lyme have had abnormal laboratory test results from KDM that improve after his treatment (takes years sometimes) into more normal ranges - something psychiatry cannot do with the only government approved therapy of CBT/GET.

In this respect, he practices evidence based medicine with admittedly a huge dose of vital experimental medicine as there is scant established knowledge what to do post diagnosis and what works as each patient is unique. Additionally it appears sex/gender plays a difference how the illness presents itself immunologically.

Although I have never seen KDM or had a Lyme diagnosis myself, I have followed his research findings and to my surprise many of the abnormalities in the government denied 'Chronic Lyme' (more likely an autoimmune illness aka a subset of ME CFS) he claims to find in his own ME patients, I have discovered too. I tested myself for Borrelia and true to form, I don't make Borrelia antibodies at sufficient levels for an official diagnosis. (NB: KDM claims the most sick PWME don't). So his claim in my case, was correct.

However, this wasn't sufficient for me as it could be fluke so I ran a urine PCR assay which showed Borrelia and another co-infection. Without KDM's theory, I never would have thought of investigating the concept of 'seronegative Lyme'. I then tested my parents and noted similar findings and they are now also sick. Lastly I checked for persister form antibodies and noted my parents make them but I don't. This would correlate with KDMs claim that ME can run in families or be caused by blood transfusions as my mother had a blood transfusion before I was born, has ME like me, yet none of us have been bitten by ticks. The children born before me are all healthy also.

Years later I see other CFS researchers usually find related parts of the puzzle KDM may have also discovered previously - namely his claims over disturbed immune gut function, elevated D-Lactate (is this the form of elevated brain lactate in imaging studies?), Mold infections, Cytokines causing neuropsychiatric symptoms ,Herpes virus reactivation, elevated ammonia, VEGF/TGF-B1 etc etc. Of course, positive study results vary on which CFS criteria is used so biomedical research findings are rarely replicated due to this variable plus the fact no one is confirmed to have ME CFS anyway (heterogeneous cohort again) making research findings almost impossible to draw conclusions on.

So for sure, ME/CFS/Chronic Lyme or Seronegative Lyme aren't diagnosed with a single accurate test, and for that reason, there will inevitably be alleged KDM patients who are misdiagnosed, and so treatment fails and money is wasted on ANY proposed treatment. Sadly, this is the very nature of heterogeneous fatigue based syndromes though.

Taking that on board, if KDM really is so useless and scamming all ME patients who see him, how is this possible? It's evidently not and also in his defence he always runs extensive lab tests at prices that when done in house (Redlabs) are very cheap compared to other labs. Sometimes, 1/3 of the cost for some tests. He also sends samples out to other labs which cost the going rate of course.

Lastly why would an alleged unscrupulous doctor say on multiple videos, years ago, it's actually very hard to treat ME CFS patients who've been sick for decades? Surely he'd claim his wonder cures can treat anyone at any stage of their illness? Like the CBT/GET crew do so well?!

He does the opposite and says he can only usually make ME patients much better who are teenagers or been sick a few years. Again, this claim fits in with the clinical experience of other ME CFS researcher physicians, who sadly noted this phenomena.

So I think if people are to get upset about KDM they need to see the bigger picture that has him dealing with heterogeneous uncertain clients walking into his office and secondly, all treatment at this point in time, no matter if it's orthodox or not, remains experimental and at best clinic based and that's not any doctors fault and also would explain why patients inevitably fail to respond whilst others succeed.

 

[YippeeKi YOW !!]

@Research 1st
A heartfelt and persuasive defense of a fairly controversial Dr, who's at least up front about the limits of his abilities to 'cure' this crappy illness, and about the experimental approach he takes to trying to craft a personal treatment protocol for each patient that comes thru his doors.

It was good of you to post it, in the face of so many people who seem to clearly feel that they've been ripped off, and who may or may not have forgotten that sometimes, especially when we're desperate, we may hear things that haven't actually been said, or misinterpret that which was.

 

[Mel9]

@Research 1st
A heartfelt and persuasive defense of a fairly controversial Dr, who's at least up front about the limits of his abilities to 'cure' this crappy illness, and about the experimental approach he takes to trying to craft a personal treatment protocol for each patient that comes thru his doors.

It was good of you to post it, in the face of so many people who seem to clearly feel that they've been ripped off, and who may or may not have forgotten that sometimes, especially when we're desperate, we may hear things that haven't actually been said, or misinterpret that which was.

Yes, agreed! Well put @Research 1st

Borrelia infections should be diagnosed on the basis of symptoms because antibodies are very ‘ify’

One might have had a minor infection easily taken care of by antibiotics and yet, years later, anti-Lyme campaigners might find that a perfectly healthy journalist is ‘positive’ for Lyme.

That proves nothing.

 

[roller]

Thank you. I know of a few ME-patients who are even worse off than me, being bedbound or in a wheelchair because of KDM's "lyme treatment". I still have contact with some of them, it's terrible.

as of 2019 we dont know whats going on in the body. there are no reliable means, to measure/make visible cause and effect - neither in disease nor in improvements. so, even if lyme-titres and health improved after a doxy-treatment, its imo still just wild guessing to claim it was lyme bacteria that caused the issues in the first place.

from my own experience, every improvement causes a "shift". some culprits gone, but that makes room for others to thrive. and they do.
from my own experience, this can cause shocking developments, making you "bedbound" and worse.

after all, i believe, a treatment can only follow that life-cycles and adjust accordingly: treat the most likely culprits. when this was successful, watch out and take aim at the new battlefield.

to me it seems, that is what kdm does. and the more i close in, the more im impressed by his treatment protocols.

i wish, i had known of him some 10 years ago. i was living so close, i may have managed to crawl there

if i was in a wheelchair (after his treatment), i would wheel back to continue treatment.