Someone cured of cfs/fms - looking for Radio

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by saint1, May 12, 2014.

  1. saint1

    saint1 Member

    After battling this for so long, I decided to seek out individuals who have been cured of it. Radio has a protocol he followed to get well. He moved to this forum, and looking to continue following his protocol. Hope he shares it here.
  2. saint1

    saint1 Member

    I'll look for your story. After struggling so long, a light bulb finally came on, and I thought to look for someone who has been cured - or at least put it in remission. Your story can be the life boat people are searching for.

    I have implemented your protocol - been taking the digestive enzymes & TMG (that has hydrochloric acid in it) and the LRT. In fact, I contacted BodyBio to see if we can get some kind of a group discount. I think you said you used Nutricology also - and they are much cheaper. So, I ordered that. They don't have the same 4:1 oil ratio - or at least didn't state that it did. Do you think it will get into the cell to do the repair of mitochondria?

    I know I asked you a lot, so will try to keep to a minimum. What is your take on Famvir and Valcyte?
  3. saint1

    saint1 Member

    You've obviously done your homework. I have a hard time digesting the technical stuff, and have to go back and re-read it. I bookmarked the link to "A Summary of Leading CFS/ME Protocols", and will also re-read everything again.

    Dr. P said have to stay on antivirals for life - which shocked me. If we can get immune system up-and-running, won't that take over to keep viruses in check? Are you on long-term famvir or Valcyte?

    You mentioned "mast cell activation" - I believe that is related to allergic response, and I have terrible allergies. I began taking Probiota, as that is supposed to help lower histamine. Did you have a lot of allergies?

    You mentioned "lack of blood flow" as impairing mitochondria. Will the antivirals take care of this? My blood tests revealed high fibrin which I believe means the blood is thicker. I tried nattokinase, which is supposed to digest fibrin, but had horrible reaction to. Will this impair blood flow to mitochondria? If so, do you know how to correct it?

    Sorry for asking so much, but I am undergoing surgery and desperate to get my body into fighting shape for this next assault.

    Thanks again for sharing your knowledge.
  4. Mikie

    Mikie Moderator

    Over the years, I have researched, and utilized, a lot of different treatments to deal with the various conditions related to my CFIDS/ME and FMS. All of them helped. It wasn't until I did the peptide injections, though, that my symptoms went away. I also never use the "C Word" (Cure).

    Love, Mikie
    RadioFM likes this.
  5. Mikie

    Mikie Moderator

    All symptoms of CFIDS/ME and FMS are gone. My tender points are gone. I've been sick since 1990 and really sick since 2000, until the other treatments and the peptide injections, so I'll likely never be the same as I was before the mycoplasma infection triggered my CFIDS/ME. I suffer from the same things as my neighbors and friends my age--lower back pain, which I don't think is related to my former illnesses. I've aged almost 25 years since getting sick so it's difficult to tell just how I might have fared had I not gotten these illnesses.

    Before the peptide injections, I did the Guai treatment for my FMS and it was very successful. Only problem is that it's so restrictive regarding what one can use in one's daily regimen. Also, it's very slow and if one tries to increase the dose to hurry things up, it causes painful FMS flares. Still, at the time, it was about the only thing available. It got me out of bed and off of morphine.

    Transfer factors, antibiotics, antivirals, and heparin all helped but with the peptide injections, it's a one-treatment deal over the course of a year. Biggest drawback is that ins. doesn't cover it so it was all out of pocket.

    Love, Mikie
    RadioFM likes this.
  6. saint1

    saint1 Member

    Flat on back all day yesterday. Think the famvir must be killing virus.

    If there isn't a way found yet to kill viruses inside of the cell, then how do you deal with it? Is there a liposomal product that might work?
  7. saint1

    saint1 Member

    Mikie - Can you tell me where you got "peptide injections" and what they are?

    thx
  8. saint1

    saint1 Member

    Radio - what is your take on chlorella to detox liver? I also bought yerba bentonite clay, and try to do the cholestyramine once a day. Came across one study that said bentonite clay worked only a little. So much info to process. Did you take liver detox supplements?
  9. saint1

    saint1 Member

    Rado - I emailed Andy Cutler and he specifically stated that alpha lipoic acid should never be taken except on a 3-4 hour around the clock dosing schedule. He also said never take the R-ALA form.

    This concerns me because so many supplements contain ALA.

    He gave me permission to quote him:www.noamalgam.com
    www.noamalgam.com/hairtestbook.html
  10. saint1

    saint1 Member

    I know you don't have all the answers, but you seem pretty knowledgeable. You've also regained your health - which is what I am struggling hard to do. I'm weary of trying to fix myself alone. Fibro doc is good; he helped some, but he didn't have all the answers either, as I'm not fully functioning. I emailed my fibro doc about the peptide injections.

    You said the viruses that live in cell may need pharmacologic intervention. Do you mean famvir & valcyte?

    That was an inspiring story! I had a ton of amalgams removed, but the dentist had no knowledge of how to do it properly, so I know I ingested/ inhaled a good amount of mercury. Did you have any root canal teeth removed? I read some docs saying they're bad - but once you extract the tooth - something has to be put in it's place.

    I did the Andy Cutler protocol onc time months back - but did it rather haphazardly, as he said the ONLY way to do it is around the clock every 3-4 hours. I thought about doing it again, but right now trying to get my liver in good order.

    How can you have a B12 deficiency when the sublingual forms are easily tolerated? ALA helps endothelial function and nerve function?

    I was trying to use the chlorella to detox liver because of being on flucozanole, famvir, & celebrex (as well as other things). Didn't know there was a chance of it moving mercury around. Maybe I'll go with the bentonite clay. Read where people use P & B shakes - psyllium & bentonite. But then, my neighbor said cleanses are supposed to wipe out the good bacteria. Do you have any thoughts on this?

    Taking cholestyramine, but that is very binding. I take magnesium citrate, but ran out.

    I was going to try taking magnesium sulfate orally (epsom salts) - although supposed to not take for longer than a week. Why did you say taking msm a bad idea? I tried one pill one day again & got massive headache. I was using the cream I mixed with the epsom salts, but it was messy - and then I read all the toxins in creams at Environment Working Group's website & thought I can't afford any more health challenges.

    I read on one site I came across that people helped with GcMaf. Have you ever tried this? I saw it can be ordered online, but the guy Joe, from the forum said something about afraid it would be seized at customs.
  11. saint1

    saint1 Member

    That link on heavy metal toxicity was worth it's weight in gold. I just emailed it to my family members. Did you ever use DMSA or DMSP? Andy Cutler's protocol calls for taking ALA (he said never use the R-ALA form) every 3 hours around the clock - and never use it any other way, as I believe it can release the toxins into your brain or something.

    Have you had any root canal teeth pulled? I just wonder what these holistic doctors expect people to do if they have teeth pulled. Have to research it more.

    I was just reading a health magazine this morning about the strong anti-inflammatory effects of curcumin - maybe you can try that.

    I wonder about your B12 status. I take 5,000 of Jarrow methyl B12 a day/ alternate with Perque brand. My blood tests were run, and the fibro doc said my B12 was really high, but said "that is a good thing". I just don't know if the blood tests measure correctly, as I don't know if it needs to get into the cell. My belief has always been that the body regenerates itself if given the right things.

    Can you tell me why you thought it a bad idea to use MSM sulfur?

    I went on one site, and someone said they were cured using GcMaf. I thought of ordering it (I'm pretty desperate to get well) but only place you can buy it is I think from Holland, and someone mentioned that customs may seize it. And I don't believe you get your money back.

    Still wondering about those peptide injections. Asked fibro doc about.
  12. saint1

    saint1 Member

  13. jaminhealth

    jaminhealth Well-Known Member

    The Prolotherapy MD that I listen to on the radio, said he has done avacodo diets in his life.....I eat a lot of avacodos, but may start eating more.....there is a supplement that is avacodo based but contains soy and I don't like to consume soy. I'll look for the name of it and post....it's Avo-vida.

    For COLD therapy, look at the Cryotherapy post I have here.....jam


    I've been doing the Great Lakes Hydrosylate for a few months now......many love with product....I posted about this here a few months ago.
    Last edited: May 18, 2014
  14. Mikie

    Mikie Moderator

    Hi, Saint,

    Peptide injections are now called, amino acid solution injections, at the insistence of the FDA. Only about 20 docs in the US do them. They originated through Oxford University and their research facility. The theory is that we are sick because our brains stop making peptides in the proper sequence to do their jobs. The injections contain the proper sequences which eventually train the brain to produce them on its own. The formulas are closely guarded and not much info is available. This treatment isn't covered by ins. At the time I did it, the shots were $300 each, every month for a year. I think they are now closer to $400 and some docs charge more.

    The infections, which initially triggered my CFIDS/ME and contributed to my illnesses, never go away. If I get run down or sick, they can rear their ugly heads. My mycoplasma infection stays latent but whatever Herpes-Family-Virus I have will attempt to reactivate. I keep Acyclovir on hand for when this happens. I also still have sensory overload now and then. I take Klonopin for that.

    So, as you can see, I am not problem free. I just don't have to be bedridden and on pain pills. I do not suffer from post-exertional exhaustion and can work out aerobically. As I mentioned, I no longer have FMS pain nor tender points. I ain't perfect but I'm better than I used to be. I don't know whether the injury to my brain, which allows sensory overload, is from my CFIDS/ME or from multiple head injuries, starting at age 11. I do know that the infections I suffer never usually go away in anyone. The just go latent if one is lucky.

    Love, Mikie
    RadioFM likes this.
  15. saint1

    saint1 Member

    Mikie,

    Thanks for sharing that. Do you know where you can get a list of docs who do these shots? I emailed my fibro doc about, but just in case he doesn't think they help, it's good to know.

    It is not a big surprise that insurance doesn't cover shots. They take so much of our money for our lousy plan, and fight us every inch of the way when we need to use it. My elderly neighbor warned me years ago about how lousy insurance companies are - now "I'm" older, and know the truth of what she told me years ago.

    My son used to do cable installations, and told me the most expensive homes weren't always the doctor's and lawyers - they were the insurance executives. So draw your own conclusions.

    I was just reading about how spirulina helps boost/ regulate the immune system. I was reading Amy Yasko's info. that Radio posted. She recommends an RNA formula - but very expensive. I read that spirulina has RNA/ nucleic acids in it.
  16. saint1

    saint1 Member

    I'd like to take an avocado oil supplement. I bought avocado oil, but bought wrong kind - it's for the skin. I need to find an alternative way to get vitamin E - which has been shown to help fibro people - but every time I use it my eyes swell. I've tried different brands, and same thing happens.

    What does the Hydosylate do for you?
  17. saint1

    saint1 Member

    I'll keep it brief: Why did you say before that it was a bad idea to take MSM sulfur?
  18. jaminhealth

    jaminhealth Well-Known Member

    Well, I'm taking the Hydrosylate to REPLENISH collagen in my joints/body.

    I take HIGH doses of MSM daily for a lot of years, it helps CALM pain for me. jam
    RadioFM likes this.
  19. saint1

    saint1 Member

    Some of that info is very complicated to read; especially when you're health is not up to par. Famvir taking a toll.

    My one question: How can you tell if you're in the category of being unable to metabolize sulfur into sulfate?

    Don't know if this is relevant or not, but I took MSM one day a few weeks back and got massive headache.

    thx
  20. saint1

    saint1 Member

    Some of that info is very complicated to read; especially when you're health is not up to par. Famvir taking a toll.
    My one question: How can you tell if you're in the category of being unable to metabolize sulfur into sulfate?
    Don't know if this is relevant or not, but I took MSM one day a few weeks back and got massive headache.
    thx