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    • #21366
      Bolt Upright
      Participant

      Fecal microbiota transplantation therapy for Parkinson’s disease

      A preliminary study 2020 Aug

      ncbi.nlm.nih.gov/pmc/articl…

      The motor and non-motor symptoms were evaluated by scale scores during the 3-mo follow-up. The score of PSQI, HAMD, HAMA, PDQ-39, NMSQ and UPDRS-III significantly decreased at 1 and 3 mo after FMT.

      10 out of 10 people that had a single colonic FMT treatment showed showed both motor and non-motor improvements.

      They had a self satisfaction chart that showed 10 out of 10 were satisfied for at least 4 months. 1 satisfied for 18 months and 2 satisfied for the duration of the study, 24 months. This chart seems kind of vague.

      I’m going to try and get more data on this study. I can’t believe they did not keep measuring UPDRS for the 24 months.

    • #21387
      Todd Kitten
      Participant

      As a PD patient and a microbiologist, I found this study interesting. As you pointed out, the study had good and bad points. For the latter, as you noted, they stopped testing after 3 months. Also, by the 7th month, only 4 of the 10 colonic transplant recipients still reported satisfaction. As for the 2 who were still happy after 10 months, it would be interesting to know whether the results would have been the same or different with a placebo group had they included one. It’s nice that the colonic group showed superiority over the nasointestinal group but they didn’t tell us if people were assigned randomly to those two groups. Finally, it was a very small study.

      On the positive side, I would love to see a cure for PD, but I doubt I’m alone in that I would be pretty excited to have a treatment that did no more than stabilize my symptoms. So when I see that most of the colonic patients showed substantial improvement and that it was more than momentary, I can’t help but like that. Good news is better than bad, even if it is preliminary.  A PubMed search for “microbiome” and “Parkinson’s Disease” turns up 586 articles, so this is clearly an area of interest. In my quick scan, I didn’t see any human studies better than this one, but apparently there’s at least on clinical trial going on:

      https://www.clinicaltrials.gov/ct2/results?cond=parkinson%27s+disease&term=fecal+transplant

      It is supposed to involve 48 patients, blinding of everyone involved, and follow up for 12 months. There are some other interesting aspects to this study as well that I won’t mention. Something to watch for, but not for a while….

      • #21391
        Bolt Upright
        Participant

        Thank you so much for weighing in Todd Kitten! A microbiologist, that is exactly what we need on this case!

        I did send an e-mail to Doctor Jin-Long Zheng asking:

        1. The paper shows UPDRS scores went down in month 1 and month 3. Did you continue to collect UPDRS scores for the entire 24 months of the study? If so, did they revert to baseline?
        2. Did all the subjects that had the colonoscopy delivered FMT improve scores in all the categories (PSQI, HAMD, HAMA, PDQ-39, NMSQ and UPDRS-III) or did some get worse?
        3. The two subjects that reported satisfaction with the treatment for 24 months, do you know if they continued to improve? Do you think their PD progression has been stopped?

        No reply yet, but it has not been long.

        I am so interested in hearing your opinions on so many things.  I know my gut issues have gone back 40 years and I seem to have been able to normalize them pretty well with the Specific Carbohydrate Diet and Intermittent Fasting. I’m thinking a handful of frozen crapsules a day for 6 months on top of SCD and I might have things back on track.

        FYI: I have not been diagnosed with PK. I have been diagnosed with REM Sleep Behavior Disorder which, it seems, a LOT of doctors consider pre-Parkinson’s.

        Thank you so much!

    • #21415
      Todd Kitten
      Participant

      Bolt,

      I should also say that I would be interested in hearing about your diet and your supplements, probiotics, etc. I adopted a vegan diet for a while. It was great for preventing constipation and for weight loss. The problem was that I didn’t need to lose weight, and I eventually had to add in other foods to start to regain some of what I lost. However, my vegan (semi-)personal trainer would be in complete agreement about periodic fasting and if your carbohydrates are from plants, then your diet as well!

      • #21416
        Bolt Upright
        Participant

        Thank you for asking Todd!  I should preface that I did not go to college but I am a very motivated learner.

        My diet is a combination of the Wahls Paleo Plus Protocol and the Specific Carbohydrate Diet. I avoid all foods that are prohibited on either list.  And I avoid dairy even if it is approved. Here is a great resource for SCD: http://www.breakingtheviciouscycle.info/

        There are 2 reasons SCD appeals to me:

        1. There is some thought that bad bacteria is sitting in our gut getting fed by hard to digest food just sitting around.  SCD is based on only eating food where the molecules are easily digested, so food does not just sit around and ferment.
        2. It seems the goal of FMT for PK would be to normalize the gut flora.  I found a study that showed the SCD could normalize gut flora on its own, as long as you still had some of the needed flora: https://pubmed.ncbi.nlm.nih.gov/33291229/

        I think I am also usually in ketosis.  I only eat between the hours of 2 PM and 10 PM.

        Supplements (everybody please remember I am diagnosed with REMSBD not PD):

        I just today cut out a bunch of supplements.  These are what I removed (I may add things back. I was taking too many):

        1. Idebenone (is being trialed to slow progression of REMSBD to PD/LBD).
        2. Lion’s Mane.
        3. NAC.
        4. Glycen.
        5. Magnesium L-Threonate.
        6. Amazon brand Solimo probiotics.

        Here is what I kept:

        1. B1 500 mg in the morning.
        2. Jigsaw Health Butyrex from T.E. Neesby 6 per day (2 with my B1, 2 at 2 PM with food, and 2 at 9 PM with food.
        3. Curcumin with both meals. Make sure it is 95% curcuminoids.
        4. 100 mg of selenium with 750 mg of Inositol because I have Hashimotos and I read a study where they converted a bunch of people with sub-clinical HT to euro-thyroid using about this protocol. I am not sub-clinical but it still seemed worth a shot to lower inflammation. There is a lot of thought people with HT should not take selenium and neither should men over 50.
        5. Niacin 250 mg Time Released at night. There is a study of 47 PD patients on this dosage for a year and all of them had some improvement or no worsening of UPDRS scores. Small study and no control group but I take what I can find. Niacin works as an anti-inflammatory in both the brain and the gut. Niacin binds with the GPR109A receptor, which is anti-inflammatory. Butyrate binds with it too, just not as strongly, so I time my butyrate to be used when the niacin is out of my body.
        6. And Melatonin 10 mg. It seems to make me sleep like a baby and there is evidence it is neuroprotective.

        And tomorrow I add Zeolite Clinoptilolite powder. Supposedly it detoxes you whole body. And it fixes the leaky gut.  And is an antioxidant and anti-inflammatory. And calming. This is not from the moneymaking pages, this is from the NIH: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6515299/

        I’m kind of an outlier on the SCD and the Zeolite.  I look at everything and if it makes sense to my high school educated brain I might just give it a whirl.

        I also have my Ambroxol but I am still on the fence. And I have a red light that I need to start pointing at my head.  Tomorrow!

        Thanks, Bolt.

         

    • #21414
      Todd Kitten
      Participant

      Those are great questions. I hope you get some answers. I went back and took a second look to see if the article had an online supplement where that sort of detail is often published, but as you probably saw also, they didn’t.

      BTW, your link got cut off. This one might work better:

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7458210/

      This version of the article is free to the public so anybody who wants to read it should be able to.

      I think it’s likely that at the very least at least some people either acquire PD from their gut or their gut contributes to the condition. That may be an overly cautious assessment, but it’s hard to say right now.

      As you probably know given your level of interest, the gut microbiome is complex, and the good news and the bad news is that for other conditions, at least, health or disease is often associated with certain metabolic capabilities rather than a particular bacterial species. That’s bad in that it makes it more difficult to assign blame to one particular bacterial species or hope to cure or prevent disease with another. On the other hand, it may mean that one day we’ll be able to ingest a bacterial cocktail of species with health-associated genes or  metabolomes and there will be at least a few that will be capable of colonizing each of our colons, despite their differences. And of course, feeding them is also important. We’ve probably both read the same advice that a plant-based diet is best at delivering the nutrients that will make it all the way to the colon where the good guys are located.

      It’s a fascinating topic, but given its general complexity and the scarcity of work done with good animal models, it’s hard to know how much time I should spend on this literature. I still have my day job and would like to keep that for a while. In fact, I have ~80 million base pairs of bacterial DNA on my hard drive right now that I’m working with, but the project isn’t related to PD. And of course exercise is good, and I’m trying not to not completely neglect my wife(!) Nevertheless, I may not always be prompt about it, but I’ll be happy to try to answer questions online or off if I’m able.

    • #21461
      Todd Kitten
      Participant

      Bolt,

      I have one more question for you. I’m curious about your choice of supplements and your decision to cut back. You mentioned your reasoning for some of your choices, including noticing an effect of melatonin. (The same has been true for me. I also have REMSBD, though for me, it’s definitely accompanied by PD.) However, beyond that, what has guided your decision making? I usually try to add one new drug or lifestyle change at a time and then attempt to determine whether there is a positive effect. So far, I’ve had very little luck. Of course, this is made more difficult by the possibility that it’s hard or impossible to detect a slowing in the rate of deterioration, which might be the best that PD patients could hope for in most situations. Even so, I have been trying to do “N of 1” studies on myself. When I first heard about this, I was skeptical because among scientists “N of 1” is usually a derogatory characterization of a poorly done study, but I thought this article made sense. I wonder if you’ve ever done this without realizing that’s what you were doing and if so, which of your treatments passed the test. If you’re interested, you can read about it here:

      https://www.knowablemagazine.<wbr />org/article/health-disease/<wbr />2020/single-subject-design

      -Todd

      • #21474
        Bolt Upright
        Participant

        I saw a video with the godfather of FMT, Dr Borody, and he mentions one weakness with the modern trial method is they only test one drug at a time. If it does not work they move on. But it takes 3 drugs working together to treat AIDS. This resonated with me.
        I like to just keep adding things that make sense to me. As long as I have an idea of what I THINK they are doing and how they compliment each other. Then my plan is to remove them one at a time (instead of adding one at a time).
        In fact, I just removed my NAC and Glycine about a week ago and had another RBD episode 2 days ago. So maybe the NAC/Glycine was working for me? I had gone a month without an episode.
        Anyway, that is my logic. I know I need to calm my body (B3, Mannitol), okay, it occurs to me I don’t exactly know what I think the rest of the supplements I take are doing. I need to write that part down.
        More to come once I review my list.

    • #21485
      Todd Kitten
      Participant

      Bolt,

      Fair enough.

      Actually my latest quest for a dietary adjustment would be to find a good source of farnesol on the chance that it might help. (It’s apparently found in certain fruits and vegetables.) However, the reason bringing this up would take us off-topic. Still, I expect that this article will get some attention from the website that we’re on now. The journal the article was published in is highly regarded, and for good reason. This article has a supplemental file with more than 70 tables presenting the raw data on which their conclusions were based.

      I’m not sure if the article is publicly available yet and it’s too technical for most readers anyway, but I found it very encouraging:

      https://pubmed.ncbi.nlm.nih.gov/34321320/

       

       

    • #21932
      Robert Li
      Participant

      Thanks for a great thread.  I think there is a huge weaknesses in many microbiome studies in terms of learning of how they might help us.  The weakness is that they often only change one variable at a time.  So for many people, the microbiome ends up resembling how it started.

      For instance, when autistic children are given an antibiotic to kill off excess clostridia, the clostridia often come back because the spores can easily survive outside the body until the antibiotic is stopped.  Then the spores can not only reinfect, but have less competition from weaker bacteria – the competition is usually what keeps them in most people from being truly pathogenic.

      My thought is that attempts at gut biome modification be done with supports even though that’s not how it’s usually done in studies.  For example, supplementing with vitamin D.  Low vitamin D is much more common in PD than in controls, and is necessary for the immune system to work properly, including helping control the microbiome.  Also, NAC and vitamin C are good for helping break down biofilms that pathogenic bacteria use to protect themselves.  What do you all think?

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