How I put ME/CFS into remission....& even better

[mattie]

I’ve tried FMT (Fecal Microbiota Transplantation) as described by the OP.
Did the whole thing: Centrifuged, triple encapsulated DIY freshly made FMT pills.
Excellent healthy and known donor.
Took at least 250 capsules over the course of 6 weeks.
0 / nada improvement. No ill effects either.

If you are in a SIBO subgroup it may be more helpful.

In my opinion the risks are low and for me this was absolutely worth trying.
Certainly could not hurt my microbiome as I have been given heavy courses of antibiotics in 2017.
At least my microbiome diversity should have been restored by this procedure.
But as I said, it has not helped with any of my ME or Dysautonomia symptoms.

 

[ljimbo423]

I’ve tried FMT as described by the OP.
Did the whole thing: Centrifuged, triple encapsulated DIY freshly made FMT pills.
Excellent healthy and known donor.
Took at least 250 capsules over the course of 6 weeks.
0 / nada improvement. No ill effects either.

Did you use antibiotics to wipe out the existing microbiome immediately before the FMT? Are you positive you had a donor with a healthy microbiome? Did you follow a strict prebiotic diet during and after the FMT?

If you did all of these things then I would say you are comparing apples to apples. If you didn't do all of these things than your statement above is not accurate-

I’ve tried FMT as described by the OP.

I feel like it's only fair to compare apples to apples. Meaning doing the very same protocol to assess weather it truly works or not.

As far as donors go, I think it's crucial to know that they have a healthy microbiome or it won't help.

A person can be physically healthy but that doesn't mean they have a healthy microbiome. Unless they have extensive stool analyses done, one can never know.

Unless you have a 5 year old that has never taken antibiotics, then you can be pretty sure. How do you know your donor had a healthy microbiome?

The OP used his 5 year old daughters stool, knowing that she had NEVER taken even one course of antibiotics. I read somewhere that the average person in the United States has taken 10 courses of antibiotics by the age of 18.

I had taken probably 15 or more. There were 266 MILLION prescriptions of antibiotics given out in the U.S. in 2014! There was only 318 million people living in the U.S. in 2014. The point that I'm making is that finding a good donor would not be easy.

This is a quote from the original poster (OP)-

Based on data from the Stanford symposium, this will make sense to many of you. Almost every researcher from 2017 and 2018 alluded to the gut microbiome as being extremely different than healthy controls. So here is what I did.

A. I used antibiotics to erase my gut again. I realize I now have a better solution that doesn't require antibiotics and doesn't take more than a 24-48 hrs.

B. Using my daughter as a donor (as she has never had antibiotics in her life) i proceeded to extract the probiotic material from her....you guessed it. STOOL. Now unlike over the counter probiotics, this had the entire makeup of 1000-5000 strains unlike the maybe 25-30 you can get over the counter still.

C. Now many have tried enema fecal transplant, but I can explain why only a small subset of ME/CFS patients respond to that. I however encapsulated the probiotic contents in a way to ensure delivery to about 1/4 of the way into the small intestine. The enema only reaches the large intestine.

D. Then I endured a strict prebiotic diet and within weeks I felt better and months I was living (some again).

POST #1

He also spread his FMT's out over 3 months time, not 6 weeks like you did-

I started back in January and the most significant portion of my remission has remained since about March. I did however perform about 9-12 FMT transplantation events between Jan-Mar.

POST #9

 

[SherDa]

I believe a strict prebiotic diet is probably an extremely important factor in the success of FMT. It seems a person would have to stop eating many of the foods that fed the dysbiotic microbiome while making a concerted effort to feed the good. This may be a radical dietary change for some people, especially those who eat a lot of acellular carbs. It may be true that a strict prebiotic diet alone would be enough but maybe would take longer than a protocol with antibiotics and FMT? And maybe high polyphenol intake could be used instead of antibiotics to help shift the microbiome. (Just some of my thoughts based on the many articles I've read and my gut feelings.)

 

[mattie]

@ljimbo423 It seems you feel a need to invalidate my attempt at this even though you have no idea what I did exactly.
First of all: no FMT is the same. There will always be many parameters that will not be exactly identical.
OP's story is just anecdotal. So is my attempt at this. This is not science. It's common sense.

I will not go into all the details, but let's just say I followed the exact protocol, under close guidance by the OP.
I can't even remember if it was exactly 6 or maybe 8 weeks but do you really think that is super-relevant? I don't, neither does the OP.
I can assure you that when you have swallowed 250 FMT pills on an empty stomach, prepared exactly the same way as the OP proposes,
that the donor's microbiota will get transplanted.
I have been eating a "prebiotic" diet for over 20 years.
I had my donor eat a prebiotic and otherwise very strict and healthy diet for 2 months before starting the FMT.
No I did not have my donor tested, that is just not an option where I live.

I used antibiotics to erase my gut again. I realize I now have a better solution that doesn't require antibiotics and doesn't take more than a 24-48 hrs.

Indeed he now proposes another protocol involving fasting and high dose Epsom Salt flush.

I think the OP's method of FMT is very good. But it is not very different from the many DIY tutorials that were already out there.
I think only the idea of triple encapsulation (instead of double) was added. I also believe that the only reason he got onto this forum though is to seek out "clients" to sell them his "coaching" services. That is also the reason why moderators stepped in at the beginning of this thread. Still no judgement there.
I absolutely believe that he means well. FMT however is definitely not a panacea. But in my opinion well worth a try for some of us.

 

[ljimbo423]

@ljimbo423 It seems you feel a need to invalidate my attempt at this even though you have no idea what I did exactly.

Sorry @mattie , I'm not trying to offend you. Also, I'm not to trying invalidate your experience with FMT.

I'm just pointing out that you didn't do the very same protocol as the OP. This is your quote- "I’ve tried FMT as described by the OP".

I feel like it's important for other people that read this to know the details before they decide weather the OP's protocol works or not.

I think not taking the antibiotics to wipe out much of the bacterial overgrowth before the FMT could have made the difference in weather it worked or not.

It seems to me that getting rid of a lot of the bad bacteria/overgrowth before doing the FMT would make it much easier for the bacteria in the FMT to find a place in the gut to implant and to better stabilize it.

I understand it wasn't feasible for you to have your donor tested but knowing that one has a healthy donor is absolutely crucial for FMT success.

Again, this is not a criticism. I'm just adding another viewpoint for other people reading this thread.

 

[mattie]

I'm not trying to offend you

No worries, I'm not offended.

Everything you are saying here is hypothetical. We simply don't have the research or statistics to prove any of the points that you are making. Not enough data on this.

Quote from OP:

I realize I now have a better solution that doesn't require antibiotics and doesn't take more than a 24-48 hrs.

If you (or someone else) thinks it is crucial to take antibiotics first, then by all means, go that route.The OP did not recommend this to me. Also I had no signs of "bad bacteria" or SIBO.
I did a few days of fasting combined with an epsom salt flush prior to FMT. After this a bit more fasting to get all the magnesium out, and then: in with the new habitants! And followed by lots of prebiotic yummies. I am sure they must have felt right at home.

If you think that only tested donors can give you beneficial microbiota than get your donor tested if you can.
I had to settle for a very healthy, but untested donor. Rather that than a donor that I would not know personally. Also daily availability of your donor is important if you want to prepare a "fresh" batch of pills every single time.

FMT for anything other than Clostridium difficile infection is an experiment, nothing more.

Again: the OP's story is anecdotal and so is mine.
Would I have had results if I did it differently? We will never know.
There is absolutely no evidence that FMT is beneficial for ME/CFS.
It would be nice to hear more stories of (lasting) improvements in ME/CFS patients.
From the activity on this thread I conclude that not many on this forum have tried it.

There are a lot of different FMT protocols. None of those has been proven to be more effective than the other, although the oral route will make sure the probiotics will reach your small intestine.

 

[ljimbo423]

No worries, I'm not offended.

Good to hear.

Everything you are saying here is hypothetical. We simply don't have the research or statistics to prove any of the points that you are making. Not enough data on this.

I agree, there isn't enough evidence yet. Although I think there will be as research continues on the gut, immune system, mitochondria and brain connection, which Stanford and other research centers are researching.

Jose Montoya said last year that Stanford is looking at "The gut, brain, immune system axis". The Solve ME/CFS Initiative (SMCI) are also looking into the the gut, immune system, mitochondrial and brain connections.

Jarred Younger is a part of the SMCI team, studying the link of ME/CFS to the brain inflammation he has found.

My feeling is that a healthy gut is absolutely crucial to recovering from ME/CFS.

 

[Saraht]

Our stories leading up to ME/CFS and while battling it have some remarkable similarities. Yet due to subcategories of this illness, many of us fail to respond to treatments that work for others, and in fact some of us may get worse. The science behind ME/CFS is indeed still in it's infancy.

For those that watched the Stanford Symposium on ME/CFS, (2017 available to on Youtube and 2018 soon enough), much of what I say here will be corroborated by the research. Remember though, my story is an anecdote, and anecdotes are not science. My story however is still worth telling, I will help connect it to the research from the Symposium.

This is largely a crude summary yet I have offered more detailed info on a website "our2ndbrain.com".

My story started with a superbug (MRSA) infection. I was hospitalized for about 12 days with surgeries to remove necrotic tissues, and massive IV antibiotics. The doctors did save my life, but little did either of us know that I would soon be sent to Hell for it.

I would call my decline into ME/CFS as more gradual. I didn't feel the same after MRSA, but I wasn't quite bedridden yet. slowly as systems started shutting down, I kept hurting more, doing less, catching every illness, and the worst for me....I just couldn't think anymore. The cognitive decline was hardest for me. I did however get a stomach bug about 2 years after MRSA that did send me over the cliff. Prior to that I had been researching and researching (as you all do), but now I was barely able to leave bed nor read on most days.

My life was limited to the occasional window to study (on the disease) and maybe a couple of chores around the house and drive the kids to school. Had them ride bikes home, as this was too much. Big thank you to my wife for taking the lion share of work load without complaint.

So now I had to find answers. Answers that the doctors didn't have, not even the ones who were once the president of an ME/CFS association. We have all felt that pain of expensive doctors who just can't help. It was incumbent upon me to find answers.

Reading research (when I could) from socialized medicine countries like Finland, Norway, Sweden, was easily the most helpful. Socialized medicine allows for research into unprofitable ventures when needed. Not to say that capitalized medicine has produced great results too, just that there is no profit potential in ME/CFS yet so no research. In short here is what I did after about 1.5 years in bed and dedicated research.

** This is my story. You are urged to talk to your doctor before even considering. This procedure is illegal for doctors to perform in the USA for this purpose, but it wasn't (isn't) illegal for me to perform on myself. **

Based on data from the Stanford symposium, this will make sense to many of you. Almost every researcher from 2017 and 2018 alluded to the gut microbiome as being extremely different than healthy controls. So here is what I did.

A. I used antibiotics to erase my gut again. I realize I now have a better solution that doesn't require antibiotics and doesn't take more than a 24-48 hrs.

B. Using my daughter as a donor (as she has never had antibiotics in her life) i proceeded to extract the probiotic material from her....you guessed it. STOOL. Now unlike over the counter probiotics, this had the entire makeup of 1000-5000 strains unlike the maybe 25-30 you can get over the counter still.

C. Now many have tried enema fecal transplant, but I can explain why only a small subset of ME/CFS patients respond to that. I however encapsulated the probiotic contents in a way to ensure delivery to about 1/4 of the way into the small intestine. The enema only reaches the large intestine.

D. Then I endured a strict prebiotic diet and within weeks I felt better and months I was living (some again).

It is important to note that this was only part of the problem. If I was to rate the recovery, I would say around 65-70% recovered. I couldn't go all day yet, but certainly wasn't stuck in bed (hell) anymore.

I am collaborating with Dr. Phair from the Standford symposium about the second phase of my progress. I have also shared my results with Nancy Klimas. I had to extrapolate my own treatment from work similar to Dr. Phair's. He makes a great case though for why providing this information too early could cause some issue for those willing to self treat. It is a challenge that isn't without some risk especially for those who cannot stomach getting worse before getting better again. They would like more time designing the treatment and monitoring.

I will say this though, the answers are coming. Extrapolating from Dr. Phair's work and much more while being willing to take some (calculated) risks has resulted in my health surpassing my Pre-MRSA days. I am better than I was in my 30s.

At 44, I took my kids to Magic Mountain for example, and they couldn't keep up. I am taking them camping this weekend and have no worry of running out of gas mentally and physically. I run 6 miles some days, I do p90x others, swim, do chores....basically live life again. My brain is as sharp as it was when I was younger and to feel again... Little did I know how bad my brain chemistry was. I can feel the emotion from movies again, I can smell fresh cut plants and grass (olfactory clearly was shut down). I could go on and on about what was missing in my life, but now I want to focus on what is missing in yours.

I hope this offers some hope to you. We so desperately need it. The conclusion of this is simply this "the answer are coming, please just hold on for it."

May you find some joy and comfort today. I hope you have some family, but if not, count me as a brother.

Hi
I am really interested in doing FMT using my sons stool. Did you do any screening of your daughters stool?
I am worried about parasites and wether genetic diseases eg hashimotos that my husband has can be passed on to me. I think I would prefer to use my own family as I would have a donor on hand if needed and I know his medical history.
thanks Sarah

 

[Learner1]

I am worried about parasites and wether genetic diseases eg hashimotos that my husband has can be passed on to me.

It's easy enough to have your donor do a stool test to look for parasites, viruses, candida, etc. Your genetic disease question (like Hashimotos) doesnt make much sense.