My ME/CFS Expert (Dr. Susan Levine) Said She is Very Excited About This "Future" Treatment (Fecal Microbiota Transplant-FMT)

[Daffodil]

Dr. Hazan seems to have some interesting things going on. I might look into her clinic.

https://progenabiome.com/our-services

Her center is also running a clinical trial on ME/CFS. I wonder if I should consider joining...

https://clinicaltrials.gov/ct2/show/NCT04100915?recrs=a&cond=me/cfs&draw=2&rank=3

i actually didnt know about this trial thanks!

 

[Daffodil]

@Eobara i would join it if i were you cuz normally her testing is very expensive. it will also make it easier to get treatment with her if you ever have the chance in the future

 

[hapl808]

i cant get over the feeling i had those few precious days. i cant even remember not being utterly miserable at every minute of every day. . but i began waking up and ...everything was so different. like someone had taken 100 bricks off my body. i was a different person altogether. even knowing the immense loss and realizing just how much misery i had been living in for decades....even that seemed bareable. i hope i can get back there again

This perfectly describes the few days I had of remission following my first antibiotic treatment with Zithro 10 years after ME/CFS onset. All symptoms disappeared, and I felt like a different person. The world smelled different.

Sadly that was over 10 years ago and never had another experience like it.

 

[Daffodil]

This perfectly describes the few days I had of remission following my first antibiotic treatment with Zithro 10 years after ME/CFS onset. All symptoms disappeared, and I felt like a different person. The world smelled different.

Sadly that was over 10 years ago and never had another experience like it.

MAny with autoimmune diseases have similar experiences with various antibiotics. This microbiome thing makes all the puzzle pieces fit

 

[Daffodil]

https://cfsremission.com/2019/07/14/a-short-me-cfs-mcs-remission-with-microbiome-samples/

 

[Eobara]

MAny with autoimmune diseases have similar experiences with various antibiotics. This microbiome thing makes all the puzzle pieces fit

I was on an antibiotic a year ago for a skin infection and it did not affect my ME/CFS whatsoever. Would that point to me not having a microbiome problem?

 

[Daffodil]

I was on an antibiotic a year ago for a skin infection and it did not affect my ME/CFS whatsoever. Would that point to me not having a microbiome problem?

no because i was on iv azithro, iv doxy, iv amox, and others, plus oral pills too for yrs and yrs. i did not experience remission with them. after 4 yrs of oral i did experience some increases in energy. it depends what kind of overgrowths you have and when you are lucky, some drug targets that strain and you get brief improvement. if you take antibiotics for yrs like i did for supposed "lyme", it wears off over time....the bacteria slowly starts becoming resistant. i am 99.999999999% sure you have a microbiome problem. you can get some testing like fecal calprotectin, zonulin, sCD14, etc to check for inflammation. leaky gut, and whatnot. a few are readily available locally

 

[Daffodil]

this makes all those protocols like trevor marshall, wheldon, etc etc all make sense. that is why it was helping..not because of some mycoplasma or w/e....changing drugs, you would eventually hit on some that help with the microbiome issue. most of those protocols just keep cycling the meds. the micocyline RA protocol too

 

[hapl808]

MAny with autoimmune diseases have similar experiences with various antibiotics. This microbiome thing makes all the puzzle pieces fit

Yep, totally agree. After that initial experience with Zithro, I tried again with a longer course, with Doxy, with a couple others. Minor effects, but nothing like the initial remission.

I think it's a microbiome thing and FMT looks like it holds a lot of promise. I wouldn't be surprised if the eventual protocol is a targeted antibiotic course, followed by a specific FMT combo. Sadly, I worry we are a long way away from that being determined and delineated.

 

[Daffodil]

@hapl808 i would be optimistic. our enemy is drug companies and their ruthless pressure on the FDA to stomp out FMT within europe and N America. it worked. my hope lies in Chinese research, which is moving quick

 

[Daffodil]

there are many clinics worldwide you can go to now where you can get antibiotics and then FMT but no point if it won't engraft. even barody, who uses antiseptics to wash out colon, is getting mixed results. maybe fraxel laser, which can remove top layer of membrane will be tried one day...i dont know. things just get reseeded eventually for most. but some have been lucky

 

[Daffodil]

one woman came in the group saying she keeps autoimmune in total remission with carnivore+FMT

 

[Eobara]

@Daffodil

So I called Dr. Hazan's office and got some information. She has a $1500 plan that includes an introductory appointment going over ones illness history, a stool bacteria test, and an appointment going over the test results. I asked about the clinical trial and supposedly the stool test I would pay for goes into that trial. As far as treatment, she mostly likely wouldn't be able to give me an FMT bc it is in the US, though she says sometimes there are exceptions if one does expensive paperwork with the FDA.

Do you think it is worth it for me to do the $1500 plan? I am very fortunate in that money is no problem. However, I want it everything to be worthwhile and I want any FMT I do to work above all else. Dr. Hazan seems very knowledgable, and maybe she would know the best way for me to get an FMT. I might go back to Dr. Levine and see if she knows of the best ways to get the FMT also, as she must know of some success stories in ME/CFS.

 

[Daffodil]

@Daffodil

So I called Dr. Hazan's office and got some information. She has a $1500 plan that includes an introductory appointment going over ones illness history, a stool bacteria test, and an appointment going over the test results. I asked about the clinical trial and supposedly the stool test I would pay for goes into that trial. As far as treatment, she mostly likely wouldn't be able to give me an FMT bc it is in the US, though she says sometimes there are exceptions if one does expensive paperwork with the FDA.

Do you think it is worth it for me to do the $1500 plan? I am very fortunate in that money is no problem. However, I want it everything to be worthwhile and I want any FMT I do to work above all else. Dr. Hazan seems very knowledgable, and maybe she would know the best way for me to get an FMT. I might go back to Dr. Levine and see if she knows of the best ways to get the FMT also, as she must know of some success stories in ME/CFS.

there are online success stories. the occasional ones are from a clinic or DIY from online sources but i get the feelinig most are when you use close family as donor. i will PM you

 

[Consul]

The comeback study is finished this spring and manuscript likely to be submitted late this year. Big fecal transplant study in pwme.

 

[ruben]

I had FMT in summer of 2015. This was at a clinic in Hertfordshire, UK. Never did anything for me. But my bank account went down by around £2,500.!!!!

That is too bad. Do you regret doing it? Do you still think it is worth it for ME/CFS patients to try?

I think you'd have to say that as 7 or 8 years have passed since I had FMT, surely if people were having cures or great improvements there'd be a number of people shouting from the roof tops with this life changing treatment.

 

[Consul]

Pilot study

https://www.researchsquare.com/article/rs-2805527/v1

 

[TexRob]

I also see Dr. Levine, and coincidentally I have also received an FMT, though not for ME/CFS - rather to treat a severe, recurrent C. Diff infection. For that purpose, it was extremely effective. I did not see any improvement in my CFS symptoms after the FMT, though it's possible I may have, were my body not totally wrecked by the C. Diff inflammation, and by not having eaten any food for nearly a month.

I do strongly suspect that GI disturbances are a key element in ME/CFS pathogenesis for many (though probably not all) sufferers. I notice that my GI symptoms, which are currently something you could label as IBS, are strongly correlated with my CFS symptoms. And this is not merely that my GI symptoms are a downstream effect of my CFS - my CFS symptoms worsen if I eat something that cause indigestion, for instance. And strangely, it often occurs that my CFS symptoms abruptly improve or worsen immediately prior to or after a bowel movement.

I would recommend not getting an FMT for the time being, even if it holds a lot of promise as a treatment. When it comes down to it, there is no such thing as a reputable clinic or donor when it comes to finding a 'perfect' donor. Even when I received an FMT for my C. Diff, working through the most official channels possible, the screening criteria were extremely lax compared to what I think would be warranted for identifying 'perfect' donors. And of course, we don't really even understand what makes a donor perfect - once there is some real, objective benchmark for donor quality then maybe it might make sense to do FMT for ME/CFS.

In the meantime, it might be worth looking into probiotics. I've had some limited success with 'Innovix Mood Probiotics', which contains two strains that have been shown in one study to modulate the HPA axis, by sensitizing glucocorticoid receptors. The impact of gut flora on systemic endocrine function is, I think, sorely underappreciated. Probiotics are a much safer way to experiment with this theory without the high cost, inconvenience, and potentially drastic adverse effects of an FMT.

I think there are many doctors on the right path to treating various parts of this disease, but I am confident it's based on a Thiamine intake issue that should be addressed as well.

I had C Diff for almost two years, Vancomycin for most of that time, off and on. Mine was cured with a fecal transplant in 2018. I believe that was the event that really kicked my CFS into overdrive, not the cure, but the infection. I've been chasing a diagnosis and cure since.

I really don't care if I annoy people by "spreading this info", but people need to make the final connection. A fecal transplant + diet and supplements might very well fix some people, but if your root cause for the Thiamine deficiency isn't addressed, it can just come back. It's been talked about ad nauseam, a bottom up (traditional medicine) vs a top down approach. It's great when some of those doctors find little things here and there. Like, there is a doctor who has found saline treatments to be hugely beneficial to ME/CFS patients. That makes total sense, because I've found that water absorption is a big problem with this condition. So, these are all great bottom up approaches to help people, BUT again, the root cause.

I have a big post about my treatment in general treatment, I guess I'll just put it in my signature. Day 23 and better than I've been in a decade (since my liver transplant for PSC in 2012).

 

[starlily88]

no because i was on iv azithro, iv doxy, iv amox, and others, plus oral pills too for yrs and yrs. i did not experience remission with them. after 4 yrs of oral i did experience some increases in energy. it depends what kind of overgrowths you have and when you are lucky, some drug targets that strain and you get brief improvement. if you take antibiotics for yrs like i did for supposed "lyme", it wears off over time....the bacteria slowly starts becoming resistant. i am 99.999999999% sure you have a microbiome problem. you can get some testing like fecal calprotectin, zonulin, sCD14, etc to check for inflammation. leaky gut, and whatnot. a few are readily available locally

 

[starlily88]

To Daffodil - I have severe gastroparesis/colonic inertia and bad IBS-C. What I don't understand is how are you or anyone getting testing like fecal calprotectin, Zonulin, sCD14 to check for leaky gut? I have gotten increasingly worse stomach/colon wise since having major surgery. Not one GI in Baltimore knows how to tell me "low volume" prep for colonoscopy. My GI who only let me do 3 Ducolax/ 10 oz mag citrate is off very sick - I can't do those 25 tabs, or drink 10 glasses of water, I can barely eat any food. I need this last colonoscopy - and GI's even Colo-Rectal Drs know zero about people w/ME who have extreme paralyzed tummy, paralyzed Colon. Do any of you have trouble emptying? Sorry, know this is about FMT's - no one does this in Baltimore, thanks Starlily88