1. Forebearance

    Forebearance Member

    Hi cisasnaps,

    If you are comfortable with being a human guinea pig, I think it's well worth trying the GcMAF or MAF 878.

    The tricky thing seems to be getting the dose right. I've read some people with CFS who can tolerate the full dose, the one cancer and HIV patients take. But there are many people with CFS that need a much smaller dose.

    I would suggest starting with a small dose and working up if you don't have any bad side effects. If you know you are normally sensitive to things, try an even smaller dose. I found I needed 1/100th of a dose, for example.

    My journal threads are called "CFS: Forebearance's thread" with a number at the end. They go back for years, but MAF is in the more recent ones.

    The best advice I can give is to listen carefully to your body when trying this stuff. Because it's an experimental treatment, the doctors are only guessing when they prescribe dosing instructions. So you have to take responsibility for not overdosing yourself.

    I hope it works really well for you! If you can find that sweet spot where it causes good effects but not many bad effects, it could be a wonderful thing! I'm really glad I tried it.

    Forebearance
  2. cisasnaps

    cisasnaps Member

    I will look for your journal and agree on finding the dosage.. I took hepapressin for a year and a half and crashed twice; I'm still climbing out of the second one which has been a year. I attribute it to the hepapressin cocktail and when I called the office, a nurse kept telling me to up my dosage. I finally used my own judgment and stopped them. Dr. E wants patients to use the hepapressin with the Gcmaf and I said absolutely not. I'm waiting on blood test orders and will see my doc about getting this going in the next couple of weeks. How on earth do you measure 1/100th of a dose!?!?
    Christa
  3. Forebearance

    Forebearance Member

    Hi again Christa,

    You know, a lot of people take either Hepapressin or Nexavir with their GcMAF and say it's really helpful. But I don't take those things because I tried Nexavir and it was way too strong for me.

    I know myself, so I split the GcMAF into doses that were 1/10th of a standard dose. The first one I tried was much too strong, so I tried 1/10th of one of my syringes. At that small a dose it's just approximate, of course. It was a tiny droplet.

    So I just rubbed it into the skin on the back of my hand. Because it would have been hard to inject that! And it worked just fine that way. At least, for me it did.

    Best wishes!
    Forebearance
  4. IanH

    IanH Active Member

    GET SOME SUN -lots of sun!
  5. hopeandscepticism

    hopeandscepticism New Member

    My experience with Gcmaf was positive. The cost is definitely prohibitive, I put it all on credit cards and will be repaying it for a while, but it's a pleasure. When I add up the cost of less expensive treatments (supplements alone) that had no effect, finally paying for something that improved my life was actually cheaper. I had extreme inflammatory immune responses after the Gcmaf injection and needed very small doses in order to keep this effect manageable. At times the injection would cost me a day or two in bed, but it was qualitatively different than the CFS crashes that would keep me in bed. I felt that my body was actually doing something with the rest.

    My vitamin d levels got to normal levels. Then my NK cells raised to normal levels. I started to have one or two "normal" days a week rather than a slow gradual improvement every day. It was so weird after 4 years of illness to feel normal, you forget what it's like. A good day with CFS is NOT the same as feeling normal, you do crazy things like walk up stairs without titrating your energy or preparing for dizziness.

    Full disclosure...I had a positive response to Gcmaf which left me well enough to research other treatments and I had 6 sessions of Mickel therapy which got me all the way to better. I had all the reservations that most people have about this therapy, but I became a radical empiricist while sick...I just do what works for me, regardless of philosophical orientations.

    Now I am not sick but I lack stamina from years of not using my body. I am going back to work 25 hours a week starting next week. Scared and excited. It's an individual decision to start a treatment and I just wanted to share my "data."

    Here's what I tried before Gcmaf and mickel therapy- SHINE protocol, acupuncture, b12 injections, nexavir, antivirals, long term antibiotic therapy, methalyation protocol (but I don't think I did it right), probiotic/heal the gut treatments, gluten free (helped a little), probably so many treatments that I do not remember. I am still taking one medication SNRI and occasional melatonin or Benadryl when I can't sleep. It is so great to use your night table for books instead of bottles of medication. Hope this info helps someone. Good luck to everyone.
  6. MicheleK

    MicheleK Member

    I am so happy for you! How wonderful! Please let us know how you do when you go back to work. That is a dream many of us look forward to fulfilling. Congratulations!
  7. joanierav

    joanierav Member

    can someone in simple terms, tell me what this is? i find it hard to navigate the phoenix rising site.

    thank you,

    joanierav
  8. Mikie

    Mikie Moderator

    I took the liberty of separating your paragraphs. Many of us cannot read posts without the separation. If you will just hit the "Enter" key twice instead of just once, it will put a space between your paragraphs. I would hate to have anyone miss being able to read your posts.

    Love, Mikie