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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

Discussion in 'GcMAF' started by Sushi, Jun 30, 2010.

  1. Xandoff

    Xandoff Michael

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    Just a quick thought I had Shoesies. Well we may may be in the light, Medical People who see this physical illness as a mental illness are not in the light. Beware of their darkness. I lived in their darkness for a long time and was so angry underneath that I just fulfilled their perception of "A Mental Illness". He doesn't have a real illness, he just thinks he does. You don't have to be a mindreader to know how certain medical people see you. Stay away from their darkness!
     
    ukxmrv likes this.
  2. Shoesies

    Shoesies Senior Member

    Amen! Yep, I am keeping that type of darkness at bay. Today is actually the first day in 2 months that I do not have brain fog, eyesight is better..hallelujah. Now if I can just figure out which of the new things I added that helped...I would never stop. My body cannot handle too many more relapses like this last one.
     
    Xandoff likes this.
  3. Daffodil

    Daffodil Senior Member

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    i thought i could go back to part time work to keep my drug coverage so i contacted some old friends at my previous job. i was feeling better when i did this. after famvir, i had declined but i got a call from the HR manager who asked if i could fill in for a sick employee for 2 - 3 weeks. i enthusiastically said yes. i worked 1 day for 6 hrs, and woke up the next day feeling like i was about to die, literally. i could barely move my neck, had chest pain, and it hurt to move my body.

    i could not go in again, and have now made a very bad impression. this was very upsetting and i sank into a deep depression and began feeling hopeless and suicidal again.

    then i thought about what had helped me in the past, out of all the things i have ever tried. the only things that really helped were: AZT, tenofovir (a little), and GcMAF. AZT i could not tolerate for long.

    try as i might to deny it and focus on the gut or EBV or whatever, the truth is staring at me in the face: what i have is a retrovirus. whether it is an exogenous or endogenous one, who knows. but it is a retrovirus, which probably woke up by the EBV or came with the EBV or woke up the EBV itself.

    there are 2 reputable specialists using antiretrovirals, that I know of. one of them is dr. chia. someone reports about her experiences with him on the other forum. i dont think dr. chia claims to be using these drugs for a retrovirus..he gives some other explanation i think.

    based on this, i have decided to ask my doctor to add Epivir ...beg rather....and i am not sure he will do it. but this is my plan. also, i used 10 ng GcMAF last week and felt almost nothing but sleepy. so next week, I will use 20 ng. i am still waiting for xifaxan to arrive from india.

    if xifaxan helps, it will be temporary. i know that. it is a retrovirus that is causing the inflammation that is resulting in bacterial translocation from the gut.

    i feel numb. i have lost everything already...done all the crying and raging and praying. there is nothing left. but to just keep going as long as my will holds out.
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Daff,

    Please be careful. You had a bad time with 20 ngs of GcMAF before. Re: he Epivir, why not ask Dr. Jamie Deckoff-Jones what she thinks? Trying things on your own, in the past, has often made you feel worse.

    None of us would like to see that happen!

    Sushi
     
  5. Daffodil

    Daffodil Senior Member

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    thanks sushi. i will try to contact her. i wonder if those who respond to acyclovir have their EBV somehow waking up a retrovirus and so silencing the EBV makes their retrovius latent again......whereas the people who do not respond, maybe had their retrovirus awakened and now it is causing problems on its own, without EBV or whatever the trigger was.

    i wonder if anyone in the world with any disease, has ever been treated in a trial with anti-HERV medicine. the only one i know of specifically for HERV-K is monoclonal antibody or something like that....
     
  6. Shoesies

    Shoesies Senior Member

    Daffodil - IDK sweetie how to answer your question but my heart hurts for you, everyone else...and me too damn it! ARGH. Naturopath is convinced that I do not need antivirals, he knows of a chinese herbal medicine that will "get the virus" out of me. Well that sounds wonderful, any clinical evidence it actually works? Freaking EBV is a B word and she likes to dig in Mr. Man. Of course he and the GP are poopooing GcMAF. Praying the appt Tuesday goes well with Dr. Bradstreet and I am comfortable with his level of care and expertese. Otherwise, I suppose it is buy a cabin in teh mountain wilderness, infinite cases of wine and hie myself alone to it and wait for the end to come. ARGH
     
  7. Forebearance

    Forebearance Senior Member

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    Thinking of you, Daffodil.
    Fore
     
  8. Daffodil

    Daffodil Senior Member

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    thanks all:) shoesies..i think i might buy a cabin in the wilderness even if i get better, after this trauma lol

    i had a trip form hell yesterday across the border to pick up xifaxan. took one dose already. dont feel anything yet ...just the usual suffering.

    its generic from india but it looks legit...
     
    merylg likes this.
  9. Shoesies

    Shoesies Senior Member

    Daffodil I pray that the xifaxan works for you. We should pool resources and get that cabin!! Looks even more promising to me today. I do not need the stress my life brings...just wish to hide away somewhere and heal.
     
  10. Daffodil

    Daffodil Senior Member

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    i just think i will have extreme PTSD after all this
     
  11. Shoesies

    Shoesies Senior Member

    (((daffodil)))
     
  12. Daffodil

    Daffodil Senior Member

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    {{{{{{{{shoesies}}}}}}}}}
     
  13. Daffodil

    Daffodil Senior Member

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    well i am 2 days into these antibiotics and they arent doing anything. brain totally fogged up. maybe i will just die this way. it is starting to really look like it.
     
  14. Shoesies

    Shoesies Senior Member

    Hey Daffodil, prob a stuipid question but have you tried monolaurin? Something is finally working after my three month relapse...pretty much bedridden except bathroom and sink for water three months. I had my first five month good spell after monolaurin and juicing four months...of course I felt better and stopped. BOOM. Not so sure it is only monolauren...I take a TON of other supplements and start GcMAF monday. Just wondered if you tried it. Kinda depressed myself...I really think I must prepare for a life of fear at relapse. It scares me to death to think of going trhough this again. Not so sure I can live through too many more of these. I feel you Daff, I really do...and you have been at this so much longer. I do not know how you do it.
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Shoesies,

    What dose GcMAF will you be taking? Even if the doc hasn't told you, ask him so you can evaluate the dosing effect yourself.

    Incidently, GcMAF keeps me stable. But it isn't an immediate effect--takes a while.

    But even if I overdo, I don't tend to crash--just maybe have to rest for a day or two. I hope it works for you!

    Best wishes with this,
    Sushi
     
  16. suzanne

    suzanne Senior Member

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    Re: Anatabloc

    Me again- same old struggle with inflammation, itchy skin and migraines.

    I have an ongoing issue with inflammation even when I take a tiny dose of GcMAF. I am still experimenting with what might work for me, to dampen the inflammation. I seem to react to everything! I am currently experimenting with a nano dose of cats claw- but not every day as that caused me a set back that took 5 days to recover from.

    In terms of anatabloc, I will never take this again. My reaction to just 1/4 tablet was really severe. Unlike the cats claw which tends to make my inflammation feel better, almost instantly, with the Anatabloc, I had symptoms that lasted 2 days- bad headache, nausea and woozy- sort of like when I start up on SSRI's? Perhaps a dopamine effect.

    In case any one else is thinking of going down this path- this is what the Anatabloc researchers have responded with ( not much help really!), but FYI:

    I have had a chance to discuss your situation with my colleagues in the safety department here. I can tell you the following:

    First of all, Anatabloc is a nutritional supplement and is not intended for the treatment of any disease. As such, what we know about it for any condition, including fibromyalgia or autism as the case may be, is only what we have heard from people such as yourself. Some report benefit while others do not.

    In the case of fibromyalgia, some people with this condition who have started Anatabloc have reported a worsening of their symptoms, but may be able to use the product starting very slowly at lower doses. However, we do not recall any cases where worsening of symptoms has occurred with a dose of 1/4 tablet as you describe.

    We recommend that people with medical conditions who want to try Anatabloc do so under the care of a health professional. Obviously, this would be particularly important for someone such as yourself.

    Finally, we are currently working on new versions of Anatabloc that contain fewer ingredients besides anatabine. Since we do not know the cause of your reaction to Anatabloc, you may wish to wait for these alternatives to become available.

    Thank you very much for contacting us regarding your experience with Anatabloc.

    Best Regards,

    E. Douglas Kramer, MD
    Consultant to Rock Creek Pharmaceuticals



    Next steps:
    I am going to keep going with the cats claw for a bit and have a few other possibilities to trial...I'll report back as I go. I have not yet written off the luteolin as a possibility but it too gave me bad head pain?

    My dr has given me a script for a raynauds medication ( I have raynauds) and I am yet to trial that- it is meant to hold possibilities as having an effect on TNF. Fingers crossed
     
  17. Daffodil

    Daffodil Senior Member

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    hi all. this xifaxan might as well be a sugar pill. its doing nothing. i am still nauseous and very ill.

    i have also lost some of the gains i made on GcMAF by now. i dont know if its because of the famvir i took. i still am a little better on GcMAF - i was bedridden and felt near death before and now i am out of bed most of the day (though not active) - but any gains i made with the fog are totally and utterly gone.
     
  18. ukxmrv

    ukxmrv Senior Member

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    Sorry to hear that Daff. Glad that you are a little better. Just wish we all had better answers on how to fight this disease.

    Sending you a hug ((((DAFFODIL))))
     
  19. Daffodil

    Daffodil Senior Member

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    thanks uk. maybe i should restart famvir...
     
  20. Shoesies

    Shoesies Senior Member

    Dr. Bradtsreet did not indicate the dosage. He did say he would start me on baby steps. He seems to think Lyme may be a factor. This has me more depressed. UGH, will it end already! I know it takes a while, am prepared for that as I remembered you sharing that and so much more. After I get comfortable with dosage...I may have some questions for you. I have found the formula to convert the dosage to nanograms and have a supply of saline injectible to dilute it. I think after the testing comes back we will have a better idea of what treatment in addiction to GcMAF to begin. Praying it works also. At least it offers the hope of working.
     

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