1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
Discuss the article on the Forums.

Dr. success using higher doses of GCMAF

Discussion in 'GcMAF' started by CindyWillis, May 6, 2012.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,158
    Likes:
    4,747
    Albuquerque
    Sorry, don't know the reason why our moons disappear, just know it is a common thing that "means" something. Someone here probably knows though! The shriveled fingertips (like your hands have been in water) is also common. I also don't know the relationship between that and fading of fingerprints or even if there is one--just know both are common.

    Sushi
  2. CindyWillis

    CindyWillis

    Messages:
    93
    Likes:
    26
    I got tired this week but worked a 85 hour week which I am sure caused this. I am going to try very hard to take the yogurt every day at 5pm. It really helps when I take it but I don't take it enough times during the work week. I am now up to .9 GCMAF and am taking .6 heppapressin when I take my GCMAF shot and then .15 per day Monday-Friday. I find that this shot of heppapressin REALLY helps a lot during the week. I worked too much this week and got tired on Thursday and Friday but will try taking the yogurt each day to see if that moves things along more quickly.
  3. lnester7

    lnester7 Seven

    Messages:
    1,138
    Likes:
    997
    USA
    How/where does one get yogurt w MAF in it???? Where can I order it?
  4. Daffodil

    Daffodil Senior Member

    Messages:
    2,644
    Likes:
    632
    i think you have to buy some stuff from a doctor and make it or something
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,158
    Likes:
    4,747
    Albuquerque
    Hi Inester,

    If you are a patient of Dr. Enlander you can buy it from him ready made. He has developed his own kind that is probably slightly different from the one developed by Dr. Ruggiero. If you want to use the one developed by Dr. R, you need to see a doctor in Vienna or have a session with her by Skype, and then order the ingredients and make it yourself.

    Dr. Cheney was doing some trainings for his patients on how to make it, but I believe you have to be one of his patients. Somewhere in one of the MAF 315 threads you will find the contact information for the Dr. in Vienna.

    Best wishes,
    Sushi
  6. Overstressed

    Overstressed Senior Member

    Messages:
    401
    Likes:
    126
    Belgium
    Hi,

    I've made some observations lately, and after reading the interview with Dr. Ian Lipkin, it made some things clear to me.
    Before the interview, I read one report where they stated that disappearing lunulas was associated with cell apoptosis. Now, in the interview, Dr. Lipkin states that (...) platelets are chewed up by antibodies(...).

    Since I was on Gc-Maf, my lunulas became stable, but since beginning of this year, I'm re-experiencing the beginning of my illness all over again. One of that is disappearance of my lunulas and fingerprints. My interpretation is that possibly, the virus is re-activated and appears back in the blood. The body tries to fight back by producing large amounts of antibodies. These antibodies chew up the platelets(my bloodwork showed a huge decline in platelets which was also present in the beginning of my illness). By then, I didn't understand what it might mean. Dr. Lipkin might have supplied the answer to that.

    This is all speculation of course, but I'm convinced that disappearing lunulas is associated with cell-apoptosis.

    Best regards,
    OS.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,158
    Likes:
    4,747
    Albuquerque
    Thanks for the explanation, Overstressed.

    I hope you find a way to return to the "better health" you had before. We can do without lunalas and fingerprints, but not without health!

    Best wishes,
    Sushi
  8. suzanne

    suzanne Senior Member

    Messages:
    178
    Likes:
    45
    I am thinking of trying GcMAF- I have a question you guys may be able to help me with.
    I have VDR Taq ++ and VDR fok +-

    Does any one know if the GcMAF reduces your 125 D levels as part of the mechanism of how it works?
    The reason i ask is that I did really well on Marshal protocol for 3 years- and then it just seemd to no longer provide relief and i got sick again.

    It reckon that I respond well to benicar ( I started on it agaiin 2 days ago- in desperation) and after being off it for 2 1/2 years (whcih have been hell) I am now feeling better - not fixed- just noticably better.

    I suspect I do well on anything that reeduces my 125 D and was interested in whetehr this would result if I took GcMAF.

    Any ideas here?

    cheers
  9. froufox

    froufox Senior Member

    Messages:
    396
    Likes:
    65
    Hi Suzanne, I think some people reported that their vit D, both 25D and 1,25D normalised whilst on GcMAF ie went up when it was previously low, or came down after it was toohigh. The only thing that I can tell you about mine was that 1,25D was actually over the range after being on GcMAF for 3 months.... result 69 (ref 25.1- 66.1). However I dont know what my levels were pre GcMAF and I wasnt tested afterwards either, and I dont know what my 25D was. I found GcMAF quite hard to tolerate, so this may all tie in with the increase in inflammation that I experienced whilst on GcMAF, maybe partly to do with vit D dysregulation too. Also I cant tolerate vit D in supplements....it gives me too much inflammation.
  10. Daffodil

    Daffodil Senior Member

    Messages:
    2,644
    Likes:
    632
    lol can you tell i am still foggy
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,158
    Likes:
    4,747
    Albuquerque
    Both my Vit D 25 and 1,25 normalized on GcMAF. Many have high 1,25 and this does lower for some (don't know the percentages) while on GcMAF. I was told to check both of these every 2 weeks for the first month and then monthly after that.

    Best wishes,
    Sushi
  12. suzanne

    suzanne Senior Member

    Messages:
    178
    Likes:
    45
    I have found a dr in Perth, West Australia that knows about GcMAF and required testing and treatment for ME. I have received my first vial and had initial run of tests- including vit 25D and 1,25 D. Plus various immune markers C3 and c4 that were low for me-and whie cell count- at least this time I have some decent base line data. The 'new' dr s going to get me a nagalese test, too.
    I will start my first dose on friday and I am thinking of taking .05 for my first dose and even though this seems ridiculously low, I reckon it is easier to titrate the dose after a week if I am doing ok. I have a history of severe reactions to medications and protocols, so better to start slow.
    BTW, is it neccessary to take a supplement to try and keep inflammation under check?
    Als, I read somewhere that it would be a good idea to do fungal tratment before GcMAF, but I never seem to get ahead with fungal treatment- any views on this?
    And, lastly, I am not intending to supplment vit D with GcMAF as it causing me to itch and feel nauseaus- hopefully this wil not compromise the gcMAF.

    Any thoughts?
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,158
    Likes:
    4,747
    Albuquerque
    Hi Suzanne,

    I'm glad you found a Dr. who is knowledgeable about GcMAF--best wishes taking it!

    When you say your dose of .05 I'd guess that is ml. What matters is how many nannograms that is. That is how doses are calculated.

    Taking GcMAF can have ups and downs. Why not catch me on chat or PM me and we can discuss it more?

    Inflammation is a common problem, so you should discuss ways to deal with that with your doctor.

    Best wishes,
    Sushi
  14. CindyWillis

    CindyWillis

    Messages:
    93
    Likes:
    26
    I haven't been on this website for 3 months but wanted to report back that I am now almost 100% symptom free. I have worked a 80-95 hour week for the past 3 months and now have no relapses for all nighters and stuff like that. I have trouble with intensive exercise still but am exercising regularly otherwise. I have now been on the GCMAF at 100 for 2 months. I expect to be symptom free and be able to exercise as intensely as I want and to start going off of it slowly after another 8 months so we will see. Other than the high doses of GCMAF, I am also taking Heppapressin from Dr. Endlander and can say that I find it extremely helpful along with the GCMAF.
  15. Sasha

    Sasha Fine, thank you

    Messages:
    7,430
    Likes:
    5,284
    UK
    Thanks for coming back to report, Cindy - I often wonder if people who do well on something just disappear into their new lives and so we don't get to hear the successes. Congratulations on your recovery - I'm so pleased for you! :balloons:

    I'm also on hepapressin and started MAF 878 a couple of weeks ago (no GcMAF) so very early days for me, especially since I've been ill for 26 years but I'm hopeful, and it's a huge boost to read an account like yours.
  16. CindyWillis

    CindyWillis

    Messages:
    93
    Likes:
    26
    I agree. It is important to make sure people know what got you well. I find the hepapressin to very helpful. I didn't get it once for 2 weeks 7 weeks ago and it had a huge effect on my recovery - I started to go downhill rather quickly without it.
    Hanna and Sasha like this.
  17. GcMAF Australia

    GcMAF Australia Senior Member

    Messages:
    624
    Likes:
    498
    Cindy
    i am glad for your great recovery
  18. CindyWillis

    CindyWillis

    Messages:
    93
    Likes:
    26
    Thank you! I am so happy it has finally come and appreciate everything Dr. Endlander did to make it happen!
  19. atoska

    atoska

    Messages:
    54
    Likes:
    18
    rome italy
    CindyWillis! that is so great news!! I'm happy for you! and for all of us because it give us hope! :)
    thank you very much for letting us know how you are felling! :)
  20. Daffodil

    Daffodil Senior Member

    Messages:
    2,644
    Likes:
    632
    woo hoo!!! heart felt congratulations!!!!!!!!!!!!!!!!
    GcMAF Australia likes this.

See more popular forum discussions.

Share This Page