Discussion in 'Fibromyalgia Main Forum' started by cisasnaps, May 31, 2012.

  1. cisasnaps

    cisasnaps Member

    My Doc is Dr. Enlander in NY. I crashed, the worst in 17 years, last August. I had all the bloodwork redone (took me 2 months to get to the hospital to have it drawn!). At the time, Dr. Enlander had nothing left to offer or suggest except to look into Dr. Merlier's work. Now, he is administering GcMaf to his patients. His nurse said 'all' but based in the expense, I can't imagine. I have a voucher for a plane ticket that expires in August so I am saving every penny to build up a bank in case it works for me. It starts at about $300 a month, and can go as high as $1100 when titrated up.
    I asked about 'who' it seemed to work for, like those recently diagnosed, long term, steady vs up and down symptoms. They haven't found there is a pattern. Some respond very well, some have improvement, some have nothing. It seems there are pretty minimal risks, save for a few stories I've read online.
    I read that he doesn't do gene testing, haven't confirmed this with the office...
    Anyone on the protocol that can share experience?
  2. ladybugmandy

    ladybugmandy Member

    I have been on Enlander's GcMAF for just over 3 months. I was almost dead before that. Now, I can cook and clean a little on most days. My NK cell function is up to 65 - I think that is the levels of a healthy person. It was 2 at one point.

    I bought 18 vials of GcMAF from Enlander at $277 a vial and since I was so sick, I was able to tolerate only a small dose (that is what usually happens if you start out very sick with a lot of inflammation). Each vial has 100 ng. I am on about 16 ng a week.

    So now it turns out that I will have several extra vials after a year.

    I think it lasts a year or just over a year in the freezer, though some people say it can last longer. I bought it on Feb 14th...so if anyone wants to buy some from me at a discount, please let me know.

    Mine was never thawed...I brought it back from NYC frozen.


    ps......i know of one person who is doing very well on the GcMAF protocol (she saw DeMeirleir) after 23 yrs sick. and another man who went to med school after GcMAF after 8 yrs sick. i know several who are better. I have heard from one person who did not respond. i think most are responding.

    there are many people on the Phoenix Rising Board who are on it.

    you can also read the website of Dr. Jeff Bradstreet..he is having a lot of success with autism and GcMAF.
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  3. Elisa

    Elisa Member


    I am so happy to hear you have some improvement - it makes me happy to hear such good news.

    I read about GcMaf and Maf 314 on Phoenix Rising Forums...

    Which one are you taking - the injections or the probiotic/yogurt form?

    Can they be purchased from Dr Enlander?

    Just wondering...would feel so blessed to see an improvement!

    Take care and God Bless!!!!

  4. ladybugmandy

    ladybugmandy Member

    Thanks Elizabeth:) Not sure if you know me, but I have been through utter hell for the last 20 yrs with this agonizing illness. I used to post here a long time ago, when I was seeing Dr. Lerner.

    I am using the injections. Dr. Enlander feels that is the best option right now. Here is a video by him:

    (Commercial URL deleted by moderator)

    Yes...they can be purchased from Enlander, DeMeirleir in Belgium (for a lot less), GcMAF.eu, BGLI, some place in Japan, and Israel too.

    DeMeirleir and Enlander use the same source.

    xoxo[This Message was Edited on 06/01/2012]
  5. joanierav

    joanierav Member

    hi ladybug, its so good to hear from you. ive missed you so much, and was always wondering how you were doing. ive always enjoyed your input on here.

    yes i remember your days of "utter hell". and your trips back and forth to dr. lerner. did the valcyte help you at all? you were on it a long time.

    what have you been doing, besides the gcmaf, to have improved so.

    im so happy to hear of your progress. im not that far from dr. enlander. but i live alone and anything over 2 hrs, would be a hardship. does ins. cover the gcmaf at all.

    love and hugs. joanierav
  6. ladybugmandy

    ladybugmandy Member

    hi joan! thats so neat that you remember me! i still post all the time on the phoenix rising cfs forum. i am still not well by any means, but at least i am not on death's door anymore.

    dr. lerner's valcyte + valtrex protocol didnt help me much at all. then when XMRV came out, i tried treatment for that, which helped a little for a while...but then it was back to zero again.

    now, the gcmaf seems to be doing something good....but my optimism is always guarded!
    i am pretty sure the gcmaf is not covered by insurance...

    how are you?


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  7. spacee

    spacee Member

    So glad to hear you are not at death's door anymore.

    So, is everyone with CFS a candidate for this? Somone can buy it from
    you and just start taking it? No rx needed?

  8. Elisa

    Elisa Member

    Hi Again,

    Ladybugmandy - maybe you remember me as Elisa - we spoken here and at Phoenix Rising and during your ARV therapy.

    Does one need to be a patient of these doctors to order the Gcmaf or Maf 314?

    Anyway, I hope you are blessed with continued recovery...

    God Bless,


  9. spacee

    spacee Member

    I just watched a video of Dr. E on FB. He stated that they are arranging
    for it to be bought over the counter in Europe and the UK. Nothing mentioned
    about Canada or US. But I think they are working on it.

    Right now it is injectable form. But they are working on a probiotic "starter"
    that can be put in yogurt. You eat 3 oz at am with breakfast and it does
    absorb into the GI tract.

    I hope that this would work for me better than the VSL that KDL used to like
    cause the VSL didn't do anything.

    This does sound very promising and, personally, I would think be available
    within 6-12 months.

    BTW the GC MAF was studied 20 years ago as a treatment for HIV patients
    but I guess they found other things to use. Cheney, Elander and KDL are
    the 3 that were mentioned that are keen on this treatment.

  10. spacee

    spacee Member

    has a lot of info and will mail to the US. FYI

    There is a diet that is suggested (required?) for the stuff to 'work'. It
    requires a lot of meat and some supplement.

    He says to sunbath and get a lot of exercise to increase oxygen in body.
    That might not be doable for CFSers.

    But it seems ppl can respond even at the low CFS level. But not all.

  11. ladybugmandy

    ladybugmandy Member

    ok you guys need to go to the Phoenix Rising CFS Forum...all these questions about GcMAF are answered there. you do not need an RX and this stuff actually works. its weird. i mean..it works on like 80% of people..

    many of you guys know ..i could not get out of bed...was always planning suicide..now i can get up and clean and cook and sometimes even shop. and its only been 3 months.

    my NK cell function is up to 65...thats the levels of a healthy person.

    Enlander, DeMeirleir, Klinghardt, Bradstreet, Cheney, and many others are using GcMAF now. its the most promising thing, i hear.

    you can get it from a doctor or from (commercial URL removed by moderator), BGLI, Japan, Israel, etc. you can just order it in the mail! but its better to be followed by a doctor.

    i know several who are doing much better on this and some who are even recovered. please everyone look into this. nothing worked for me before and i think this is working...at least for now.

    right now, Enlander feels the injectible form works better than the yogurt but many are doing the yogurt too.

    Enlander feels that Hepapressin makes it work better and DeMeirleir likes to to use it with Nexavir.

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  12. ladybugmandy

    ladybugmandy Member

    oops forgot to mention that they are not sure if its safe for people with autoimmune conditions.
  13. Forebearance

    Forebearance Member

    Hi cisasnaps,

    I've used GcMAF from last October to April. Now I am dying to get more. It helped me quite a bit. You can read my story in detail in my journal-type threads, which I try to update at least once a month on this forum.

    [This Message was Edited on 06/03/2012]
  14. cisasnaps

    cisasnaps Member

    Thanks for all the thoughtful replies and I'm so glad to see reports of improvement! I will go to Phoenix Rising and read up. The GcMaf is so, so expensive, Dr. Enlander told me I have to go to his office for a 'test shot' in case I have a reaction to it. It's the cost that is pretty prohibitive right now, but I believe I could make it happen. I've read conflicting things on availability. I know it can be ordered from Belgium but between travel time and possible customs hold, it loses effectiveness. Too expensive to risk. On the other hand, could my regular GP access this? It seems only a few specialists supply it directly...
  15. ladybugmandy

    ladybugmandy Member

    hi christa. you can order it from (Commercial URL removed by moderator). its expensive there, too. you can also order from BGLI.


    when i brought it back from dr. enlander's office, i used a cooler and ice packs and the office typed a letter for me for airport security.

    enlander's office will mail you some too. they say its ok if it stays at room temp. for 72 hours but i didn't want to risk it.

    Enlander is now selling this MAF yogurt making stuff as an alernative to the injections. its much cheaper, like $70 a month or something.<[This Message was Edited on 06/08/2012]
  16. cisasnaps

    cisasnaps Member

    Dr. Enlander is selling the starter for the yogurt mixture on ebay, it's $137 a month. I don't know how to do it, but i believe the starter can be used to keep making batches, it has colostrum in it which is why the doc says to purchase every month. I buy colostrum separately anyway/ Here are the instructions, since it's a supplement he states you do not need to be a patient to order it so it's on ebay.

    new updated instructions stronger starter kit

    Use 1 gallon wide mouth glass jar

    add complete jar of STARTER KIT
    then add
    one pint of yoghurt
    one quart kefir
    one pint whole cream

    to make one months supply of MAF 878. Take 2.5 ounces (75 ml) daily each morning wit food. Add 1 teaspoon olive oil or 1 teaspoon flax seed oil to reduce gastric enzyme digestive effect on MAF 878

    Keep mixture at approx 80 degrees F for five days before use.
    After 10 days keep mixture in refrigerator

    i'm not excited about the 10 days at room temp and not sure why you can use at 5 but need to leave out 5 more.

    Anyone know more about the time at room temp?

  17. lyncourt777

    lyncourt777 Member

    The yogurt Maf 878 is $125 for 1 month supply. I just got some today. He explains it well here:

  18. LindaLowther

    LindaLowther New Member

    i called the office today and they said to put it in the fridge after 5 days. i dont know why it says 10 days in the instructions. maybe you should call the office too cuz i am very foggy.
  19. cisasnaps

    cisasnaps Member

    I contacted the office as well; it *is* 5 days at room temp. just tried my first dose today and put it in the fridge. By my scale, 2.5 ounces is 1/4 cup. Sound right by others? Would love to hear how anyone is doing on it...
  20. cisasnaps

    cisasnaps Member

    I would love the link to read your story, could you send it to me? I'm about to start the injections and after talking with one of the nurses at Dr. Enlander's office, it doesn't seem the results are as positive as once expected. Still, I'm willing to try it...