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

Discussion in 'General Treatment' started by Master4thDegree, Oct 8, 2018.

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Have you looked into the Gut Bacteria Connection?

  1. Yes

    65.5%
  2. A little

    25.9%
  3. I don't beleive there's a connection

    6.9%
  4. No, but now I will

    3.4%
Multiple votes are allowed.
  1. Master4thDegree

    Master4thDegree

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    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.
     
    Last edited: Oct 8, 2018
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  2. pamojja

    pamojja Senior Member

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    Thanks for sharing your story to recovery, very encouraging.

    What would be the solution without antibiotics?

    How you did that? Thanks.
     
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  3. Master4thDegree

    Master4thDegree

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    Much like getting a colonoscopy, one could easily just evacuate the bowels with Epsom Salt (magnesium sulphate labeled for this purpose) and then fast for maybe 8-16 hrs. Remember that our metabolic resources are already dangerously low, so this isn't without risk of electrolytic imbalance and worsening of symptoms. The second question is far to complicated for this venue.
     
    Last edited by a moderator: Oct 18, 2018 at 8:06 PM
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  4. S-VV

    S-VV Senior Member

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    How serendipitous. My ME/CFS started after 2 weeks of antibiotics, pushing the microbiome into a stable dysbiosis. I'm going to attempt a targeted course of ABx to upset that disbyosis. If that doesn't work, I'm going for a FMT
     
  5. junkcrap50

    junkcrap50 Senior Member

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    Can you share more details about these steps? How did you "extract" the probiotoic material from her stool? Sounds like you just used her stool, no? How did you "encapsulate the probiotic contents? Sounds like you did a DIY Fecal Transplant via Oral Transplantation/Top of the digestive system. What capsules did you use? How did you do it in a clean and safe way so you weren't tasting and swallowing stool?

    I have personally done FMT via enemas and had some success and benefit. (But screwed it up afterwards by eating too much fiber and too much prebiotics).
     
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  6. ljimbo423

    ljimbo423 Senior Member

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    I am convinced that my ME/CFS was caused by dozens of courses of antibiotics I took over many years. Like you, I slowly developed ME/CFS from a severely altered microbiome and the massive fallout from that.

    My view is the gut is just where it starts. From there toxins from the gut cause immune system dysfunction, mitochondrial dysfunction and low grade brain inflammation. Causing all the symptoms of ME/CFS.

    I am having great progress treating my gut although it's not a fast process, it's showing consistent progress, month to month.

    Congratulations on your recovery!! No easy feat by any stretch of the imagination!:thumbsup:
     
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  7. lnester7

    lnester7 Seven

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    How long have you been in remission? and how many FT have you had? I ask because 100% of the ones I read about, plp eventually get the symptoms back( hope is not your case) but want to make sure you are past that possibility.
     
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  8. ljimbo423

    ljimbo423 Senior Member

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    Have you seen this study? There was a 58% sustained response, after a 15-20 year follow up.

    If I remember right, these patients were given antibiotics first to wipe out most of the dysbiosis and to allow better implantation of the Fecal microbiota Transplantation (FMT).

    I think preparation for the transplantation and who the donors are, are probably very important to how successful the transplant is.

    This is a quote from Thomas Borody's study on Fecal microbiota Transplantation (FMT) in ME/CFS-

    Link to study
     
    Last edited: Oct 10, 2018
  9. Master4thDegree

    Master4thDegree

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    Great question.

    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. I may have been able to get away with fewer and especially if I started resistant starch earlier. I did wait for 1/2 year to report a remission.

    I also believe I can explain why most FMT attempts fail.
     
    Last edited by a moderator: Oct 18, 2018 at 8:06 PM
  10. Master4thDegree

    Master4thDegree

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    It was Much more complicated than making capsules from straight stool. I did use a centrifuge for example. Heavy regard for safety and sanitation and to ensure delivery into the intestines....

    Just getting fired up after some quality collaboration with Stanford and having Nancy Klimas offer expert critique.
     
    Last edited by a moderator: Oct 18, 2018 at 8:07 PM
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  11. pamojja

    pamojja Senior Member

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    Thanks. As long as you don't sell something with a site you'll be fine.
     
  12. Hip

    Hip Senior Member

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    There are currently two blog articles on the site:

    Here are some quotes from the first article:


    Very interesting. So you are saying your encapsulation of the donor fecal microbiota into enteric capsules that deliver their contents to a point around 1/4 of the way into the small intestine is key to your success? Presumably that's based on the fact that you had SIBO, which these small intestine-targeted pills addressed.

    Could you kindly explain how you created these enteric capsules? I cannot seem to find any details on your website about this.



    That may have been enterovirus, one of the major viruses linked to ME/CFS which often starts with an acute gastrointestinal infection. Enterovirus may then chronically infect the tissues of the lining of the intestine.
     
    Last edited by a moderator: Oct 18, 2018 at 8:10 PM
  13. Gingergrrl

    Gingergrrl Senior Member

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    Thank you for sharing your story and even though I do have family, what you said above brought tears to my eyes.

    I was curious if one of the antibiotics you received while ill was Levaquin or in the fluoroquinolone family (if you remember). No worries if you do not!

    I am very interested in gathering stories of people who have significantly improved and also the connection between the gut and autoimmunity (but don't want to take this off track). I am thrilled for you that you are now well enough to take your children camping and hope you have a great time together. :fire::cookie::)
     
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  14. perrier

    perrier Senior Member

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    Dear Master4thdegree,

    A question please: did you suffer from flu feeling? and more importantly, did you suffer from Post exertion malaise: this is very specific. It can be generated by just picking up a pencil for some people; or just trying to sit down at a computer and replying to a short email, or just taking a shower sitting down, and so on. This malaise seems to be the signature for this disease, if I am not mistaken.

    Did the FMT cure this? Thank you.
     
    Last edited by a moderator: Oct 18, 2018 at 8:13 PM
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  15. Master4thDegree

    Master4thDegree

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    Still in ever learning mode, what is ABx? I think that is a wise starting point regardless of what it is. FMT should be a last resort, although I don't regret my decision to do it for obvious reasons, but I was quite scared it could backfire.

    ** Now I see that fear was unwarranted, even animals perform coprophagia in the wild when they are sick.**
     
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  16. Master4thDegree

    Master4thDegree

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    I was given SO MANY antibiotics that the answer is likely YES!. They were trying to save my life.
     
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  17. perrier

    perrier Senior Member

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    Dear Master4thdegree,
    Dr Borody is Australia does the FMT with colonoscopy. Of course, that does not reach the small intestine. Your story is very similar to my daughter's, in fact. Except she is dreadfully sick.
     
    Last edited: Oct 8, 2018
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  18. Master4thDegree

    Master4thDegree

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    I too suspected Enterovirus as also Dr. Chia in Torrance California focuses greatly on that particular. The Stanford research is definitely pointing to viral reactivation as NOT being the issue for us although viral triggers to hit the threshold of metabolic collapse indeed. Any virus can do it and even a car accident can send stress hormones to the point of no return.
     
    Last edited by a moderator: Oct 18, 2018 at 8:12 PM
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  19. ljimbo423

    ljimbo423 Senior Member

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    I think I know the research you are referring to here about Ron not finding viral reactivation's. Do you have an idea of how a virus or stress would trigger metabolic collapse?
     
  20. Gingergrrl

    Gingergrrl Senior Member

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    ABX is an abbreviation that is often used for antibiotics (and doesn't mean anything more than that)!

    That makes sense and I was just curious. I agree that for sepsis, any and all antibiotics need to be given to try to save the patients life. Versus other situations where hardcore antibiotics are given unnecessarily (something that happened to me in 2010 and injured my right arm and I am still dealing with this injury eight yrs later).
     
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