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

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

  1. 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. Paw

    Paw Well-Known Member

    Thanks for sharing. Your recovery sounds wonderful. I do keep hearing more and more intriguing news about fecal transplants -- so I appreciate you keeping us updated as protocols are clarified.

    I'm curious about your non-antibiotic ideas for "erasing the gut."
     
  3. Check out my site our2ndbrain.com where I go into great detail. That info is in the "how to make FMT pills" post.

    I hope it helps even one person out there with this soul crushing illness.
     
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  4. Paw

    Paw Well-Known Member

    Nice web site. I'll be checking back. I like your analogy of being forced to go without sleep for three nights. Sadly, most analogies -- even good ones -- don't quite make their way into most people's skulls when it comes to understanding this disease. As you say, you doubt you'd believe your own illness if you hadn't experienced it firsthand. I've often wondered what I'd believe. I never knowingly encountered someone with "CFS," but I remember scoffing a bit when news stories of "restless leg syndrome" were first coming out -- so that's not great evidence of an open mind on my part. (Mea culpas only came later, after I developed a horrible case of RLS myself -- one of my early symptoms before the onset of systemic illness; another big one was my decades of IBS.)

    Maybe I missed an explanation somewhere, but I'm curious: what does your 4th degree mastery refer to?
     
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