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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. RivkaRivka

    RivkaRivka Senior Member

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    my email conversation with BGLI today included these exchanges:

    - i asked if i could get the gcmaf on my own, without a doctor. the response was:

    We would prefer to speak to one of your physicians.
    That way we are sure he is properly informed and we get the opportunity to reach many more patients.

    We are not equipped to deal with extensive inquiries from individual patients, please understand.

    We will only ship to individual patients after ensuring a doctor is monitoring the patient closely. There will be monthly labwork required and since it is an unregistered experimental product, used off label for cfs, many issues are uncharted territory. We can put your doctor in touch with a network in the US of physicians who are treating patients.

    We are only available on the phone during 1 pm and 4 pm Dutch time. Hours will be extended in future. Your doctor can also email us at: professionals@bgli.nl

    We prefer to ship directly to doctors. That way we can send it as samples for laboratory testing. It is up to the doctor if he/she would allow that as no doubt it is not according to FDA rules. If not and we have to ship to individual patients, there is a maximum order of 6-9 doses, we will ship once more if the shipment gets confiscated, after that there is no refund or third shipment. Almost all individual shipments are held up for a while at customs, so far only 1 has been confiscated and sent back.

    In future things will become more easy, various entities are working hard to establish that. Right now it's still trial and error shipping wise.
    _____

    next, i said i did not want to put my doctors at risk (since him getting the gcmaf and giving it to me is against fda regulations, i do not want to put him at risk this way) and asked these questions

    - Do you know how long the GcMAF is usually held up at US Customs, and also how long your GcMAF can be kept at room temperature before it loses potency?
    - How long can I keep GcMAF in the freezer before it begins to lose potency? (If I get 6-9 doses, it may take me a while to use it all up.)
    - What is the cost of each dose/vial?
    - Can my mother come to your offices in Holland and buy it directly from you, and then bring it back with her to the U.S.? Do you know of any complications with this strategy?

    their responses were as follows:

    The product will hold long enough for transportation.
    5-6 weeks in the fridge
    6 months in the freezer
    dose is : 1/5 of a normal dose every 3-5 days for the first few weeks
    then gradually build up to normal

    cost of a regular full dose is € 100,-
    Minimum order of 6
    excl. shipping, which is billed directly to you via your ups account.

    no, it is not an option to travel with gcmaf as far as we are concerned.
    There is no telling what would happen if the traveller was apprehended at customs.

    _______

    i replied with this:

    The good news is that I found a US government website that says it is perfectly legal to bring onto a plane, and into the USA, a 3 months supply of any unapproved new drug from abroad. (When it is a live person bringing it on the plane with them, not USP, this is called "Personal Importation.") Given this information, would you be willing to sell the GcMAF directly to a patient who comes to your office, or directly to a patient's representative (like my mother) if she were to come?

    The reason I ask about an in-person sale is because I worry about *mailed* GcMAF getting held up at customs for 1-2 weeks, and it losing its potency. The first paragraph below, from the FDA website, seems to say that it is way more risky to send unapproved meds via mail or UPS than it is to bring it in in-person (Personal Importation), which is completely legal.

    (here is the website i mentioned: http://www.cbp.gov/xp/cgov/travel/clearing/restricted/medication_drugs.xml )
    ______

    and they responded with this:

    We will not do this.
    Obviously we know about this and we still think shipping it is far safer.
    We have had quite some experience with shipping and no one has received anything that was not usuable.
    _____

    the end.
     
  2. Overstressed

    Overstressed Senior Member

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    Overstressed: May 7 2010(received 36 inj.), FOK Low responder, BSM moderate to low responder. 3 Years ill.

    OS.
     
  3. vli

    vli

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  4. garcia

    garcia Aristocrat Extraordinaire

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    They are actually very similar in potency. The paper looks at the ability of GcMAF to inhibit angiogenesis, in particular PGE1-stimulated angiogenesis. Table 5 lists the following data, where higher is worse:

    Yamamoto GcMAF: 17.4 1.7
    gcmaf.eu GcMAF: 18.3 1.5
    gcmaf.eu GcMAF stored at room temp for 15 days: 26.8 1.5

    So Yamamoto (17.4) and gcmaf.eu (18.3) are practically the same value, at least in this measure of potency (ability to inhibit PGE1-stimualated angiogenesis).
     
  5. froufox

    froufox Senior Member

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    I just have a question for those people who are on GcMAF...have u had many side effects and do u know if that is a normal response/a good sign that it is working? Also also for those who have already been on it for a little while, have any of the side effects diminished?

    Since my first injection last week, ive definitely been feeling worse and getting particular signs of inflammation eg increased depression, lots of headaches, lethargy, but ive also some very small positive signs that my immune system kicking in a little eg ive been sneezing more than usual. Ive also been getting sensitivity to light which from past experience i know is a sign of a herx/die-off for me. The depression is the one im struggling with the most though.

    I think that I might have had a little extra energy at times but it is subtle and it could just be a coincidence and nothing to do with the treatment. But thought I'd mention it anyway.

    Ive been taken Benadryl to help with histamine type reactions eg my sinuses seem to be flaring up too, but i havent really noticed any obvious benefits from that as yet.

    Have also written to the clinic to ask them about the side effects. Anyway im hoping that its all a good sign that the GcMAF is working!

    Thanks
     
  6. Overstressed

    Overstressed Senior Member

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    Hi Froufox,

    I had 36 injections until now, that makes 8 months . I've started full-dose from injection 1, and noticed immediate difference -while I was driving home from my doctors' office- on my tongue. Swelling improved, and my tongue clears up. On the third day -I received my injection fridays- sunday, I always feel tired. After I started Gc-maf, I lost weigth, actually, most of the weight I gained in one year time, and that was quite a lot. So, that's a nice side-effect. I didn't have had any flu-like symptoms, maybe a couple of times. Histamine was(and is) always a problem to me.

    However, I can not make any judgement of the quality of Gc-Maf I'm receiving. Maybe it's not good quality, maybe it's my genotype not allowing Gc-Maf really to kick-in(and therefore hardly any (bad) side-effects).

    Take care,
    OS.
     
  7. Alexia

    Alexia Senior Member

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    hi Froufox,

    Just to say that I get increased depression, lots of headaches and lethargy when I use Benadryl. And I know well because I need to use it very often and the effects are strong and very clear to me.
     
  8. tormenta

    tormenta

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    Hello to all, i am from spain, to pardon my language is a translator.

    also I am in my second injection of Gcmaff, my first injection was the past Wednesday in de meirleir clinic, I am FOK Low responder, BSM moderate to low responder in redlab.

    my side effects are awhile of relax, a little metallic flavor in the mouth and later in afternoon - night of the first day raises a little my temperature, I do not feel negative effects, I feel my less heavy body and my language is more clean, pink!!!!

    there is something of information in Internet on increase of vitamin D and the metallic flavor in the mouth and other side effects.

    I am happy for being able to read every day your forum, thanks
     
  9. froufox

    froufox Senior Member

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    HI Overstressed, thanks for sharing your experience. I'm glad to hear that u experienced some immediate improvements from the GcMAF and also that u havent suffered too many side effects either apart from the tiredness, which I have also gotten as I say. Thats really lucky. As u say it could be down to the quality of the GcMAF or maybe due to other reasons. I dont want to make assumptions about how ill you have been or are, but if I remember correctly you have moderate CFS is that right? I hope u continue to do well, thanks again!

    Hi Alexia, thanks 4 replying and sharing your experience...i'm sorry u feel worse on the Benadryl. I was getting the side effects before i started taking Benadryl so i know that its not down to that so i think its definitely down to the GcMAF. I am wondering if I am experiencing IRIS as i have a few coinfections, plus i have been ill for a long time and have pretty major HPA axis dysfunction so im sure all that means that it wont be a straightforward ride for me. I'm hoping that once im on the Lamotrigine it will help to stabilise my endocrine system as i go through these rough symptoms.

    Hi Tormenta, thanx and glad to hear that you are responding well to the GcMAF after just 2 injections thats great! I hope it continues. Have u been ill for very long? Would u say that u are mild/moderate/severely ill? Thanks.
     
  10. RivkaRivka

    RivkaRivka Senior Member

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    overstressed: thank you for your update! can you share with us the source of your gcmaf? is it KDM?

    Tormenta: thank you for your report! we look forward to hearing all about your experience with gcmaf. (gracias por su investigacion. queremos oir todo de su experiencia con gcmaf. bienvenido!!! es un placer a conocerte!)
     
  11. RivkaRivka

    RivkaRivka Senior Member

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    UPDATED LIST (Jan 18, 2011)

    can we get a list of
    - who is now on GcMAF
    - level of severity of ME/CFS
    - length of time sick with ME/CFS
    - when they started GcMAF
    - their source of GcMAF
    - their VDR results
    - if they are having any good or bad effects from the GcMAF

    if you send me the names, i'll keep adding them to this list. or you can cut and paste the list and add it yrself to yr own post.

    == Past ==
    Joey (Undisclosed source. No response from GcMFA, but it was only a limited trial of a pre-curser of GcMAF)

    == Now ==
    1. Cansado, KDM, Fall 2010
    2. Overstressed: Moderate ME/CFS. Ill 3 yrs. Started May 2010, FOK Low responder, BSM moderate to low responder. 3 Years ill. Excellent results.
    3. CindyWilliams: Dr. Sharp, Nov 2010??
    4. Nabo: Dec 2010
    5. Ronan: KDM, Dec 2010
    6. Lou:
    Sick 20+ yrs. Got GcMAF direct fr BGLI, thru his doctor. Started GcMAF Jan 2011. No response.
    7. Garcia: KMD, Jan 2011
    8. Froufox:
    Ill for 18yrs, moderate/severe. Started GcMAF 11th Jan 2011. Source of GcMAF - KDM. VDR: FOK1 - moderate responder, BSM1 - Heterozygote. Effects so far - increased depression, lots of headaches, lethargy, light sensitivity, inflammation in sinuses. Possibly some mild good effects at times eg extra energy, less inflammation in head.
    9. Tormenta: KDM. Started GcMAF on Jan 2011. FOK Low responder, BSM moderate to low responder (test done at redlab).

    == soon ==
    Sergio: KDM, Jan 2011
    Sushi: KDM, Jan 2011
    Vli: KDM, Jan 2011
     
  12. RivkaRivka

    RivkaRivka Senior Member

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    please, folks, help me update this list! take the above list of who is on gcmaf and copy it, and add yr own info, or help me fill in any of the info i am missing, and then repost it.

    if you are adding to this list yr good or bad experiences with gcmaf, keep it extra extra short for this list, like "good experience: more energy." or "bad experience: induced depression."

    warmly,
    rivka
     
  13. froufox

    froufox Senior Member

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    Hi Cansado, thanks for the info about the calcium. Can u say why it needs to be checked regularly ... is it because it goes up or something, due to the link to vit D? Thanks!
     
  14. RivkaRivka

    RivkaRivka Senior Member

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    from someone who attended the mikovits lecture yesterday at Gordon Associates medical office:


    Dr. Gordon said: the Brussels dr. says 150 patients have been successful with gcmaf. (no comment on unsuccessful ones).

    BEFORE YOU TAKE THIS TREATMENT HE SAYS:
    1. test for Vit D receptors
    2. test for nagalase

    If you dont have these, did he say that the treatment may not be effective?? not sure. He said Cheney says this process works.
     
  15. Ronan

    Ronan Senior Member

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    Why no mention of unsuccessful ones? Makes the reporting of the figure a bit pointless i would have thought
     
  16. citybug

    citybug Senior Member

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    Rivka, Do you think they would give a list of doctors to contact?

    Lou, was your doctor working with gcmaf, or did you bring it up? Maybe more doctors are starting to work with it, and if so what kind?

    Thanks, kathy
     
  17. citybug

    citybug Senior Member

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    Does KDM give a drip that compensates for testing all that blood at once? Or do any doctors do something to help, even saline? Does anyone else have the same problem I do? I'll only do 2 vials at once (prefer 1, maybe would do 3). I used to get bedridden for weeks before I was so sick from the blood draws.
     
  18. RivkaRivka

    RivkaRivka Senior Member

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    they will not give out the list of doctors using gcmaf in the usa. i asked. i think it is not many. likely very very few. but what do i know!?
     
  19. RivkaRivka

    RivkaRivka Senior Member

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    test for nagalase

    ronan, garcia, froufox, sergio and sushi,

    did you test for nagalase? do you know how to test for it? lab and cost?

    why test for it? to see a before and after analysis, or is there another reason to test for it?

    and what the heck is it?
     
  20. RivkaRivka

    RivkaRivka Senior Member

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