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

[S-VV]

I recently thought about putting ads on my campus for "healthy participants" for an "experiment" (aka FMT) that will be generously rewarded.

Of course there is a lot of risk of contracting viruses or parasites, but I don't see many other options

 

[Hip]

...and, if you don't have that, you're screwed?

Looks like the UK Taymount FMT Clinic has opened branches in Canada and the Bahamas, as well as in Slovakia.

There is also the Dove Clinic in London which provides FMT.

 

[Learner1]

Thanks - the Canadian one is in on an island in British Columbia.. I'll check it out.

 

[Hip]

@Master4thDegree, can you say a little more about adding beeswax to the capsules? In your "Russian doll" capsule instructions here, you mention:

One can also melt bees wax to coat the second capsule, but it will still be quite large again then.

When you placed your three different sized capsules inside each other, like Russian dolls, did you use beeswax, or did you just place the capsules inside another with just air between them?

I am thinking that your Russian doll triple encapsulation might also work well with regular probiotic capsules. Lots of probiotic bacteria is lost to stomach acid because most probiotic capsules dissolve in the stomach; but if one were to encapsulate a regular probiotic capsule inside a larger capsule, and perhaps use some beeswax as well, this may get more of the probiotic bacteria safety into the small intestine.

Food grade beeswax pellets like these are pretty cheap to buy.

 

[Learner1]

Looks like the UK Taymount FMT Clinic has opened branches in Canada and the Bahamas, as well as in Slovakia

It is CN$7000 for the treatment, plus travel and staying on the island for 2 weeks. That's a lot of money.

Anything else?

 

[Hip]

It is CN$7000 for the treatment, plus travel and staying on the island for 2 weeks. That's a lot of money.

Anything else?

Yes, you can see why Taymount are keen to expand their business at those prices! And the 3 ME/CFS patients I found on this forum who were treated at Taymount (here, here and here) did not mention much about a successful outcome.

Apart from asking a friend or family member, I can't see many other options.

 

[junkcrap50]

I've read stories in the main stream press about FMTs where the patient had a boyfriend or girlfriend be the donor. One person even asked a friend for donations. But it's easier to get friends and family to give a donation if you're suffereing from C.Difficile and can tell them you're going to die. People will be willing to give their poop for life or death situation. It's harder to convince them if you have ME/CFS.

 

[Hip]

One thing that might be worth trying in lieu of FMT is the unique Escherichia coli Nissle 1917 probiotic called Mutaflor, which can be bought here in the UK (but may be hard to find in the US since the FDA banned its sale).

Intestinal Escherichia coli has been shown to be lacking in ME/CFS, and Escherichia coli is one of the bacterial species used in Borody's ME/CFS study infusing cultured bacteria into the colon. But note that Mutaflor can cause a major Herx even at a low dosage, so caution is necessary.

There is also Symbioflor, which is another Escherichia coli probiotic.

 

[perrier]

It is CN$7000 for the treatment, plus travel and staying on the island for 2 weeks. That's a lot of money.

Anything else?

I would caution folks to find alternatives to Taymount.
1) these folks are NOT doctors
2) these folks are money grabbers

We booked an appointment in the UK. We had to pay half if I recall for the procedure. Yes, it was thousands of dollars.

As soon as we arrived and whilst my daughter was doing the prep, bleeding began.

The husband and wife team just washed their hands of us, because they were not doctors and had no doctor on standby.

I called an ambulance and a two week stay in hospital resulted.

I telephoned them religiously, daily, giving updates. It was mainly to their voice mail, though I spoke with them too.

After that, right after the hospital discharge, the procedure was not recommended by the GI doctors. They said to wait some months. But we were Canadians and could not just wait in a rental. And there were consequences post hospital.

I had documentation from the hospital, and the Taymount husband and wife team refused to refund us, even partially.

They told us some fib that the sample were spoiled. This was not true, as they were notified 2 or 3 days prior to the appointment for infusion. The stool samples are frozen, by the way.

I argued with them and then they said a small portion could be applied to a future procedure. By then i realized these folks were taking advantage of very sick @nd very desperate people, who were looking right and left for help.

We lost thousands of pounds/ dollars.

Furthermore, in their books they marked us as, NO SHOW

This after my daily phone calls.

Then, a year or two later one of their secretaries contacted us to ask if we were happy with the infusion. I recounted the episode and frost greeted me.

Avoid avoid avoid

 

[junkcrap50]

One thing that might be worth trying in lieu of FMT is the unique Escherichia coli Nissle 1917 probiotic called Mutaflor, which can be bought here in the UK (but may be hard to find in the US since the FDA banned its sale).

Intestinal Escherichia coli has been shown to be lacking in ME/CFS, and Escherichia coli is one of the bacterial species used in Borody's ME/CFS study infusing cultured bacteria into the colon. But note that Mutaflor can cause a major Herx even at a low dosage, so caution is necessary.

There is also Symbioflor, which is another Escherichia coli probiotic.

Mutaflor is not available in the US. You have to buy it from Europe. I bought Mutaflor some years ago and had a hard time trying to find a place to buy it. Many places in Europe would not ship/sell to the US. I don't remember how I eventually got it, maybe eBay? But I never ended up taking it, so I can't tell you how I responded. My healthy parent did take it, but didn't notice any thing.

E.Coli Nissle 1917 has a very interesting history. It was discovered during WWI because 1 solder never developed diarrhea and dysentery in the trenches where as many of his fellow soldiers did. Mutalfor is supposed to help with many digestive problems.

 

[Hip]

Thanks @perrier for posting your story of the lack of compassion and apparent greed of the Taymount Clinic. I think it is unethical for the Taymount directors Enid Taylor and Glenn Taylor not to have refunded your money.

What also concerns me is the lack of information of success rates on their website. They must have treated many patients, and at the high prices they charge they should be able to afford to pay an admin staff member to keep tabs on the outcomes; but no success rates are detailed on the website, apart from a testimonials page, and I always find testimonials pages a little dubious.

So it could be that no ME/CFS patients at all have benefitted in the long term from the £4000 FMT treatment that Taymount provide, yet new ME/CFS patients may keep going to the clinic because the clinic gives the impression the treatment may help ME/CFS. My scam alert was already activated by this lack of success rate info on the Taymount wesbite, especially as we know that Dr Kenny De Meirleir found FMT was not beneficial in the long term for ME/CFS.

 

[perrier]

Thanks @perrier for posting your story of the lack of compassion and apparent greed of the Taymount Clinic. I think it is completely unethical for the Taymount directors Enid Taylor and Glenn Taylor not to have refunded your money.

What also concerns me is the lack of information of success rates on their website. They must have treated many patients, and at the high prices they charge they should be able to afford to pay an admin staff member to keep tabs on the outcomes, but no success rates are detailed on the website, apart from a testimonials page, and I always find testimonials pages a little dubious.

So it could be that no ME/CFS patients at all have benefitted in the long term from the £4000 FMT treatment that Taymount provide, yet new ME/CFS patients may keep going to the clinic because the clinic gives the impression the treatment may help ME/CFS. My scam alert was already activated by this lack of success rate info on the Taymount wesbite, especially as we know that Dr Kenny De Meirleir found FMT was not beneficial in the long term for ME/CFS.

You know I was shocked that they didn’t even have a GI doctor on stand by. There wasn’t even one they could ring up for me to talk too for advice!

I don’t have the impression that there are many ME patients going there, at least around the time we were there. As for now, I don’t know.

But they are sure cashing in on this little project.

 

[Hip]

You know I was shocked that they didn’t even have a GI doctor on stand by. There wasn’t even one they could ring up for me to talk too for advice!

I imagined that the Taymount Clinic would be under the control of doctors, but apparently it's run by non-medically trained businessmen and women.

 

[Gingergrrl]

@perrier I am so sorry to read about what happened to your daughter and it is criminal IMO. I am hoping others will read your post in the future and it will prevent someone else from going through the pain and suffering that you and your daughter went through with that clinic. How could they not even have a GI doctor on stand-by?!!

 

[frozenborderline]

following this thread, this is really interesting

 

[Learner1]

One thing that might be worth trying in lieu of FMT is the unique Escherichia coli Nissle 1917 probiotic called Mutaflor, which can be bought here in the UK (but may be hard to find in the US since the FDA banned its sale).

Looks like Mutaflor contains corn-derived ingredients, which could cause an allergic reaction.

Intestinal Escherichia coli has been shown to be lacking in ME/CFS, and Escherichia coli is one of the bacterial species used in Borody's ME/CFS study infusing cultured bacteria into the colon. But note that Mutaflor can cause a major Herx even at a low dosage, so caution is necessary.

There is also Symbioflor, which is another Escherichia coli probiotic.

I've used Symbioflor, but it did not restore my microbiome. It didn't hurt, but it didnt help, either. I ordered it from Germany and got it shipped to the US.

I imagined that the Taymount Clinic would be under the control of doctors, but apparently it's run by non-medically trained businessmen and women.

How could they not even have a GI doctor on stand-by?!!

This is on their FAQ:

"Are clinic personnel medically trained / qualified?

FMT is currently at the investigative stage and to the most part, microbiologists and academics are carrying out the research work into the effectiveness and relevance of the procedure with a range of conditions. The United Kingdom medical authorities do not classify FMT as a medical procedure, although once the research has reached an advanced state with sufficient positive trials data, medical adoption is likely to follow.

In preparation for medical adoption, treatment at the Taymount Clinic is carried out by trained FMT practitioners with nutritional experience."

 

[Learner1]

Then, a year or two later one of their secretaries contacted us to ask if we were happy with the infusion. I recounted the episode and frost greeted me.

Avoid avoid avoid

Thanks for sharing your story @perrier - I'm so sorry you had to go through this.

 

[Murph]

I've read stories in the main stream press about FMTs where the patient had a boyfriend or girlfriend be the donor. One person even asked a friend for donations. But it's easier to get friends and family to give a donation if you're suffereing from C.Difficile and can tell them you're going to die. People will be willing to give their poop for life or death situation. It's harder to convince them if you have ME/CFS.

I asked a mate if he'd give me poop if I wanted it for FMT and he said he'd be delighted and was flattered to be the one asked!

I expect if you know someone who considers themself a bit scientific and has read a few articles about it they'd be, if not delighted to help, then at least unable to come up with a good reason not to.

The actual cost to them is what, one clean takeaway container? They will be producing the material anyway!
The main downside is in the process of working up the courage to ask.

If you put up a post on facebook I bet you'd get a lot of reactions in a short timeframe....

 

[Learner1]

So, if one is celiac, does one need to get donations from someone on a gluten-fee diet?

Part of the reason my IVIG treatment seems to cause pain in my intestines is that I'm getting anti-gliadin antibodies from the IVIG donors!! (They showed up on a stool test and I've been on a strict gluten-free diet for years...the IVIG was the only source we could attribute it to...)

How about donors ingesting corn, milk, and eggs, which I'm also allergic to?

I'm definitely interested in solving this problem, but having had hives, chest tightness and MCAS symptoms, I'm a little fearful of allergic reactions...

 

[pamojja]

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.

By any change, do you had your microbiome tested before and after?