It’s Come to This

 

According to SCIENTIFIC AMERICAN, “Eighty percent of the human immune system resides in the gastrointestinal tract. Alongside it are the trillions of symbiotic bacteria, fungi and other single-celled organisms that make up our guts’ microbiomes. Normally everyone wins: The microorganisms benefit from a home and a steady food supply; we enjoy the essential assistance they provide in various metabolic and digestive functions.”

I keep hearing about this, anecdotal data from casual new aquatences. Not the stuff of science. Those of us who are chronic patients should know the value of big ears and an open mind. You may have heard about this yourself. Fecal microbiota transplantation (FMT), commonly known as fecal transplantation, consists of transplanting microbes from the stool of a healthy person to the gastrointestinal tract of a patient.

Not very tasteful, but let’s move beyond matters of taste and consider this on its merits. I know this theory is being tested at Yale and I believe at Harvard. The Internet is crowded with patient success stories that a scientist will (and should) ignore. But there is something to this idea. I would like to know what is happening. The procedure commonly is done via enema or colonoscopy.   Wouldn’t you go down this road if there were a pot of gold at the end?

25 Responses to It’s Come to This

  1. Christopher September 23, 2016 at 7:34 pm #

    It’s interesting in a few ways. The primary example that’s most remarkable is that bacteria fused with humans a hundred-thousand years ago, and became our mitochondria (the powerplants of our cells). There’s a lot of talk via about mitochondrial dysfunction in disease processes, especially MS. But there hasn’t been much research as of yet. Mitochondrial dysfunction is one of the major points in the Terry Wahls’ diet plan.

    • Richard M. Cohen September 23, 2016 at 8:01 pm #

      We are at the starting line on this. I know Terry and wanted to try her diet. My bouts of colon cancer made taking in that quantity of greens impossible. I cannot think of a reason not to try this. It’s not FDA approved. I don’t know where to go.

      R.

      • Sandra Schneider September 26, 2016 at 8:50 am #

        Richard,
        FMT is only approved to C Diff in the US. However, the Taymount Clinic in England does it routinely for MS and other disorders. They provide the pre-tested donors.I would do it in a heartbeat, but it is just not financially and logistically possible right now for me.

  2. Christopher September 23, 2016 at 8:51 pm #

    There are about a dozen other people promoting this type of diet for MS going back to around the time of Dr. Roy Swank (who actually promoted a mostly low fat diet for MS). It seems to have wide-ranging benefits beyond MS. Unfortunately the positive results take a long time, usually on the order of years. If someone has the patience and discipline to strictly follow one of these diets, it will definitely pay in one way or another.

  3. Jan September 23, 2016 at 10:41 pm #

    I’ve read about Swank, Mercola, Wahls, etc. and am overall on board. (If nothing else, no dairy and gluten-free help with the middle age gut. Well, not that I am really middle age, mind you).

    Wahls’ first book, “Minding Your Mitochontria,” was good; “The Wahls Protocol” was even better. While I don’t eat organ meats or do her Level 3, much seems to make sense to me. I understand that she tried, and nixed, big pharma.

    Also, stress is a factor. I have had too much of it, likely exacerbating issues. Her book does cover a number of items to think about overall. I think that my overall positive attitude helps.

    I did get a set of wheels this week. Would prefer that they be on a new car, but I refer to a wheelchair for a trip. I’m okay with it. (And no, I’m not giving up). I also have two new writing clients — also think that some sense of purpose is helpful and a grand distraction, too.

  4. Dale September 24, 2016 at 12:31 am #

    Woo hoo Jan! You might want to name your wheels. I have a MUSH bumper sticker on one side from the dogsled races we go to, I usually forget it’s there until someone points it out. But after all the dread of getting one a little personal touch is fun.

    I’ve tried some of these diets but don’t seem to have the discipline to stick to any one. I could eat fish every day though. Love salad. Love cheese. Love cheese steaks. And onion rings. Maybe time to try again.

  5. Jan September 24, 2016 at 7:53 am #

    Well regarding the fecal thing, I don’t think I’d want to be part of the pilot study but if there is gold at the end of that rainbow would consider it.

    Regarding the wheelchair, people still think I broke my leg when they see the cane. I’ve gotten to the point where I might just say “something like that” or keep using that fun comment about getting too aggressive on my broomstick during a Quidditch match and falling off in thinking that I am still 35.

    Sometimes humor just works best for all… even if being 35 combined with middle-age could mean that I’d live to 150 or something, ha. Hmm, or maybe a Harry Potter bumper sticker.

  6. Jan September 24, 2016 at 8:08 am #

    Oh and Richard I think that there is a lot of individual experimentation with many things, including diet and supplements.

    I recently read where supplements don’t do a ton but the people who take them tend to be healthier. I still do take some, such as a B variety and C. That it is really food that matters, so If you medically cannot eat greens then maybe try whole foods of other varieties, perhaps.

    “Practical Paleo” by Diane Sanfilippo is pretty good and actually shows pictures of what fecal items should look like and what makes the different varieties that way. I am myself not all Paleo, however.

  7. Amy Corcoran-Hunt September 24, 2016 at 4:04 pm #

    “It’s come to this.” Yuck, and yes. I would try it. The new Ann Romney Center for Neurological Disease research is fooling around with probiotics now. My neuro is involved. I can’t get in because it’s RRMS only (big surprise) for now. Big fight in London at ECTRMS about excluding wheelchair users from all trials. I am not holding my breath. But yuck and yes.

  8. Brian L. September 25, 2016 at 4:52 pm #

    Whether or not we would be open to this sort of thing probably depends on your perspective. Life in a wheelchair tends to give a different viewpoint both literally and figuratively. When I was first diagnosed, and still lived a mostly normal life, I would have had reservations about something so “icky”. I’ve written before about how living with an incurable disease expands your vocabulary. But as my vocabulary increases, so does my newfound courage. “Icky” no longer scares me. Intravenous infusions are now a cakewalk. Hematopoietic Stem Cell Treatment, no problem. As for the latest “what if”, I don’t care if you call it Fecal Microbiota Transplant or Swapping Shit, I’m in. Sign me up. Pretty please with sugar on top. My vocabulary has grown enough.

  9. Joan L September 26, 2016 at 12:44 am #

    I have been on the Wahls diet for the past 3 plus years. I do as much of it as I can including organ Meats, fermented food, and the two to three cups each of greens, sulfur, and colorful vegetables. I also take some supplements. I try to do meditation and swim 3 times a week. I am still mostly wheelchair-bound, unable to walk very far. I often say to people when they tell me how Brave I am that I am not brave, I am terrified! So I keep on the Wahls diet in hopes it is doing something or will continue to help me at least keep swimming. I can’t afford many of her suggestions such as a neural stimulating machine, additional supplements, among other things. I’d love to try the Stem Cell thing but of course don’t qualify, too far gone. So I’ll keep on this path and see what happens next. Fecal implant, hell yeah why not.

  10. Christopher September 26, 2016 at 5:54 am #

    Joan,

    Keep it up, it won’t hurt to keep trying. The damage to nerves is fairly quick and constant, but the healing takes a very long time. There’s a really good firsthand account of healing using a similar routine as Terry Wahls by a gentleman in the UK, but it took him about ten years… and this was back in the 1970s! Sorry I can’t find the link right now, but I’ll keep looking. The biggest problem is that there are multiple things that need to be addressed biologically/physiologically on consistent basis, and that kind of discipline is very difficult if you don’t have the time and/or the resources. But there are ways to mitigate those obstacles, it just takes some creativity.

    As far as stem cell therapy, there seems to be some confusion. The “stem cell” procedures available now using multipotent cells (mostly bone marrow mast cells and adipose tissue stem cells) are not the same as the ones expressed in science literature using pluripotent cells (embryonic stem cells). The former are basically used as a general ‘reset’ of the immune system, or touted as a “cure” by crooks, hacks and charlatans who just want your money (or are just misguidedly arrogant). The procedure Richard had was similar but different in very important ways. It would take too much space to explain here. The HSCT “immune system reboot” is not exactly a stem cell therapy, meaning that it uses stem cells to repopulate immune cells but not reverse damage–it is but it isn’t. The magic bullet therapy, embryonic stem cell therapy (pluripotent cells), is 20 – 30 years off at least from a viable and safe procedure. If you EVER hear of one of these advertised… run! They are promoted by complete quacks! The best you could hope for from one of these procedures is nothing happens, but you’re out about fifty thousand dollars. The worst is that your entire body becomes a cancer incubator that’s irreversible, and you’ll have about three months to live at most. This is very powerful stuff that science is only at the very beginning of understanding, let alone figuring out. If I may, I’d like to reassure you that you actually aren’t “too far gone,” Joan. You probably don’t qualify for certain procedures the way they’re designed, but that’s changing all the time. Just keep your eyes and ears open, because you may find something your doctor just isn’t aware of in the myriad research out in the world.

    Hope this helps.

    • Joan L September 30, 2016 at 1:20 pm #

      Wow! Thanks for such a comprehensive response, Christopher! You have given some very good info here and finally explain to me the difference with the stem cell Therapies. Thanks so much. Don’t worry I will never give up and I’m so glad to have this block of Richards to come to! Thanks again!

      • Christopher September 30, 2016 at 4:20 pm #

        🙂

  11. Yvonne September 26, 2016 at 11:54 am #

    Christopher that was a great summation of all the procedures. Thanks as I am a lazy researcher! 🙂

  12. Christopher September 26, 2016 at 3:27 pm #

    You’re welcome.

  13. Jill September 27, 2016 at 3:21 pm #

    Christopher,
    How do you feel about the ibudilast study which is on the fast track for approval?

  14. Jill September 27, 2016 at 3:25 pm #

    Christopher,

    How do you feel about the ibudilast study which is supposed to finish in May2017 and is on the fast track for approval?

  15. Jan September 29, 2016 at 6:24 pm #

    It seems that it has come to THIS… “running” a marathon when doing about anything. Hoping it is a grand flare and not permanent progression.

    Rather egregious.

    Anyone else with experience in major nerve pain and weakness–gross motor, fine motor, feeling of sprained ankles, hard to cook, back weakness? I suspect stress is the culprit.

  16. Sue in TX September 29, 2016 at 9:24 pm #

    Jan, yes. My pain symptoms remit at times, as do the others you mentioned. Neuro can prescribe a number of meds for the pain, tegratal and gabipentin calm
    The nerve firing. You can also get a cheap TENs device at Walgreens ($30) for your back. I use mine and it somehow makes the pain tolerable. My home remedy for back weakness, other than lying down for a bit, is a tight up to the breasts griddle. No spanxs, I’m talking heavy duty support. 😉 It seems to give support around the middle on weak back days. Just wondering if you are sitting awkardly in your chair too. Steroids of course may be an option to consider. I hope you feel better soon.

    On poop. Yah, I’d give poop a try if I was In a clinical trial with quality controls. I gave serious thought to helminthic therapy (infect yourself with hookworm) but didn’t have the guts to
    Buy an underground
    Jasper Lawrence hookworm kit. If I could get over fact that it is a live parasite, I might – might- do a clinical trial with monitoring by Drs and most important to me – quick access to pills to kill the worms . I’m just too cautious to do my own experimenting with poop or worms. Yuck.

  17. Jan September 30, 2016 at 12:43 pm #

    Any more input re ibudilast?

  18. Jan September 30, 2016 at 1:00 pm #

    Sue, thx much… on the road now and am being brief.

  19. Christopher September 30, 2016 at 1:13 pm #

    I posted a reply about ibudilast, but I’m not sure where it ended up because it’s saying it’s still “awaiting moderation.”. Probably because I included links.

  20. Jan October 3, 2016 at 8:17 am #

    Thank you.

  21. Kathy Miller October 14, 2016 at 5:44 pm #

    After dealing with C-diff for two long years, I have myself scheduled for a fecal transplant at the Cleveland Clinic. It’s my understanding that, at present, the procedure is approved only for patients with recurrent C-diff infections that have not responded to multiple courses of antibiotics. That means I qualify. It was my cousin who encouraged me to search out possible treatment at the Clinic. My referring physician said, “If there is anyone in need of a fecal transplant, it is you.” I had to find my own stool donor, and, thankfully, the first friend I asked said yes. We have to go through an initial screening with blood and stool testing on November 4; I’m told that the actual procedure — done via a colonoscopy using my donor’s liquified poop — will be scheduled about a week later. This seems to be a revolutionary idea with many possible future applications, treatment for MS included. C-diff sufferers can see positive results in as little as two weeks! So, yes, I did not hesitate to get in line. I will let you know how it goes.