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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. pieddours

    pieddours

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    Thank you everyone who has contributed to this thread for sharing so much useful information.

    I understand that Dr Cheney is recommending sub-lingual GcMAF. Has anyone here tried that or know what Dr De Meirleir's take on sub-lingual versus IV or IM is?

    Also, does anyone have any experience with trying to get GcMAF into Australia? I'm wondering how customs down here will deal with it.

    Thanks for any thoughts.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi pieddours,

    I have not heard of KDM recommending that any patient take GcMAF sublingually. He usually recommends taking it IV though for some who have not had a way to get it IV in their home town, they take it IM. Also, for some, IM seems to be a "gentler" way to take it--though whether it is as effective as IV, I don't know.

    Each doctor has his or her own reasons for administering it by whatever means he or she recommends. I am seeing KDM, so I am taking it IV. Were I Cheney's patient I'd be getting it sublingually. They are using also using different sources but I don't know whether this is a consideration or not.

    Re: customs. KDM has successfully sent GcMAF through US customs--which is pretty strict. He has a lot of Australian patients so you might PM someone like Tony in Melbourne and he could probably give you more information. I believe he has all his legal documentation in order which may well mean that he is able to ship it to many countries.

    Best wishes,
    Sushi
  3. Tony

    Tony Still working on it all..

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    Hi pieddours, last I heard a few weeks ago getting GcMAF into Aust hadn't yet cleared all the hurdles but it's being worked on. I'll let you know here if I find anything out.

    Does anyone know if Cheney has figured out a sublingual version as yet? I've only heard he was thinking about it...
  4. cansado

    cansado

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    Last time I spoke to KDM about this and he is not very enthusiastic about the sub-lingual GcMaf. I didn't ask why because it was not of importance to me but I wish I had..

    C.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, he is prescribing the BGLI product sublingually.

    Sushi
  6. Ronan

    Ronan Senior Member

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    Ok, on my way back from my appointment with KDM today and he had some very interesting bits of news indeed! Fist off Cansado i actually asked him about sub-lingual GcMAF and he said something in the saliva breaks down the protiens in the GcMAF... or something to that effect, cant remember exactly.

    I asked him his oppinion on the latest Contamination studies and what he thought of it all. His response was that there is going to be big news in relation to the blood supply in the next couple of months and that a new study being released in about 2 months would put all the contamination arguments behind us all. I asked him who was doing this study but he said he couldnt tell me as he has signed a non disclosure agreement (not sure if he said non disclosure agreement but something to that effect). I asked if this would silence the whole contamination argument or just be a study saying its not contamination and he said this will end all the debate.

    Also, he mentioned that a well know HIV doctor is fully behind xmrv now. Cant remember the doctors name unfortunatly but he said he won a nobel prize last year in the HIV field if that rings any bells to anyone?

    On Lymphosite Infusion he said its a possible treatment route but not right now as there is too much contamination in the blood supply from the "healthy" donors that it would complicate matters worse by giving alot of people new strains of MLV.

    I asked again about IV ir IM injections as i am having problems getting IV done. he said not really any difference either way.

    Now on to me :D I told him i have been noticing a bit more energy recently (not the last week and a half though as a bad spell has hit). I am at about 15 injections now. He said as i am a moderate to low responder that the fact that i am already seeing additonal energy after only 15 weeks is a positive sign. He said it would be 30 - 40 injections for me before i should be alot better. I asked if the headaches i get 2-4 days after each injection was a sign that the GcMAF was working and he said it was. He said the GcMAF causes a reaction similar to that when you get a migraine so the headaches are a sign its doing what it should be doing i.e. macrophages working.

    I asked how patients were doing in general and he said very well indeed. He said he expects me to be fully better after 40 weeks on GcMAF. I asked if i would have to keep taking GcMAf after that and he said some patients are being kept on a much lower amount. He said full recovery likely but i might still have the same food sensativites for a few years after as it takes a long time for the memory cells to be replaced.

    Hopefully he is right about all this... not the first time ive heard i'll be fully better but things are looking positive for the time being anyway!

    Thats all i can remember now. Sitting in the airport waiting for a flight in 4 hours with a fuzzy head.
  7. Navid

    Navid Senior Member

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    thanks for sharing so much info. glad to hear you are feeling better on gc-maf and that kdm thinks you will be fully better soon .......woohoo!!!!!


    was the hiv nobel laureate doc: luc montagnaire(sp?)

    thanks:balloons::thumbsup::victory::thumbsup:
  8. leela

    leela Slow But Hopeful

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    Wow, Ronan, what a great report--especially the part of your expected recovery!
    This is all *very* exciting, and I am so grateful, once again, for all you pioneers/reporters/brave warriors
    who are helping to forge this new territory for everyone.

    Thank you and Hooray!
    :thumbsup: :victory:
  9. filfla4

    filfla4 Senior Member

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    Thanks for letting us know all this Ronan!!! Hope you have a good flight and get home safely!!

    :thumbsup::balloons::victory:
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Ronan,

    You get an award for a report from the airport! This is great news--both re: the contamination controversy and your own experience and prognosis.

    I was getting pre-migraine symptoms (aura followed by mild headache) with about the same timing after an injection as your headaches, so thanks for asking about this.

    Just got my 7th shot today and I do notice changes--I seem to have a bit more stamina if not energy--but I do have a couple of couch-bound days each week. We are just keeping a good supply of movies on hand for those days.

    Good going! And thanks so much for posting.:Sign Good Job:

    Sushi
  11. aquariusgirl

    aquariusgirl Senior Member

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    Ronan, so what's his prognosis based on? What are your labs showing?
  12. denlander

    denlander

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    hepapressin costs $25 per injection once a week

    hepapressin costs $25 per injection once a week
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    The price I quoted for Nexavir--$450 per month--is for daily injections.

    Sushi
  14. serg1942

    serg1942 Senior Member

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    Hi Ronan: CONGRATS!!!!!:victory::victory::victory::victory::victory::victory::victory::victory::victory::victory::victory::victory::victory::victory::victory::victory::victory::victory::victory::victory::victory:

    You can imagine what your message means to all of us... You were getting worse and worse, then you started feeling well, and now KDM tells you this...It is encouraging...I cannot see any reason why he could want to lie or exaggerate...I think this is what he is seeing on his patients, and he seems getting more confidence over time...I really cannot believe it, and I won't until it happens to me, if it actually does...But THANKS for sharing, and I wish you the best of luck!:thumbsup:

    Best,
    Sergio
  15. serg1942

    serg1942 Senior Member

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    Update on GcMAF:6th injection, and tests results evolution.

    Hi all,

    Last Tuesday I had my 7th shot of IV GcMAF, and I’d like to report on my progress, both physical and test results wise.

    I am doing follow-up tests every few weeks as per Prof De Meirleir prescription, to monitor mainly my vit D levels, calcium and phosphorum, although I am also running the typical blood count test.

    So far I have three tests done to compare, a first one made 1 month before starting GcMAF (on December the 2th, 2010) –I started GcMAF on January the 24th, 2011--, a second one made just after my 2nd injection (on the February the 4th), and the third one after my 5th (on March the 1st ).

    Interestingly, my number of leucocytes and of lymphocytes are higher than ever during the last 7 years of disease. Leucocytes (all the blood cells) were at 5.3 (4.5-11.5) on the first test, while lymphocytes were at 1.5 (0.9-5.1). --Note that they were usually a bit low, or on the lowest limit of the normal range, and they improved a bit after starting LDN.

    I don’t have the measurement of the white blood cells on my second test, but on the last one, after 5 injections of GcMAF, my leucocytes were at 7.3, almost on the average of the normal range, and as I said, higher than ever while on my disease (no idea bout before...)

    The same for the lymphocytes count: they were almost at 2.0, and again, I don’t remember them so high (although they are still way below the average of the normal range).

    As far as Vit. D., and calcium, here is the evolution:

    - 1 test: Vit D 1.25 OH (active): 77 (25-66) / Vit D 25-OH (inactive): 24 (30-100)

    - 2 test: Vit D 1.25 OH: 65 (25-66) / Vit D 25-OH: 21 (30-100) / Calcium: 98 (88-108)

    - 3rd test: Vit D 1.25 OH (Pendent) / Vit D 25-OH: 29.3 (30-100) /Calcium 94 (88-108)

    Worth nothing that my liver enzymes, usually high, are better than ever as well. According to Prof. De Meirleir they were a sign of the immune system struggling in the liver, so this must be related.

    Worth noting as well that my cholesterol is normal for the first time, although my triglycerides has gone up from a normal value to a bit high value. (It may be related with hypothyroidism).

    Conclusion: It seems that on CFS, because of immune activation, we usually have low inactive Vit D and high active vit D. GcMAF can usually raise Vit D, hence the need to monitor it as well as calcium, cause they go up and down together.

    It seems that my low inactive Vit D is getting higher (better!), and my high active vit D is getting lower (better too!). Calcium seems to be lowering a bit, what it is also a good sign (calcium is excitotoxic).

    On the other hand, it is obvious that my immune system is improving. At least I know that I have a higher total count of white blood cells and a higher number of lymphocytes (the latest are needed in order to cut off Gc protein into the GcMAF molecule, and of course in order to kill infectious cells! ;-).

    So, in other words: GcMAF seems to be working according to the basic tests I have right now (We’ll see the progress of the specific tests in a few months…).

    What about my physical progress??: Well, you can read about mine and other’s on this spreadsheet:

    https://spreadsheets.google.com/ccc...iV2FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en#gid=0

    It is pretty clear now to me, that I am doing more things than before and for more time. Specially going out and doing stuff that requires adrenaline, but not really many tasks at home. I think this is because of my hypothyroidism. Still, this is a fact, and quite noticeable, and I am very glad. I don’t feel more energy, but instead, I feel more stamina, what has allowed me to go out to have dinner with friends 4 times in just a few weeks, to do errands, to go to the gym, to attend a conference the same day I had gone to see a video about MCS in the morning, etc.

    The other clear change for good that seems to have been established, is the improvement of the HPA axis: I go to sleep in the afternoon, and I only sleep for 1 hour top…(not for ever as I usually did).

    Still I have a few bed-days weekly, as Sushi reports too.

    In conclusion, so far, so good… :victory:

    Hope this is helpful,
    Best,
    Sergio
  16. anncavan

    anncavan

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    Hi all,
    Thanks for the great updates! I am hoping to send my labs out on Monday to Redlabs in Brussels. I'm ordering the VDR test, but also decided that while I'm at it I'll have them run the "Cytokine RNA, inflammatory" - IL-6, IL-8, IL-10, TNF, TGF-beta1, MIP-1beta mRNA levels. For this inflammatory test, it requires a "Paxgene" tube of blood. My doctors office wasn't familiar with this. Wondering if anyone knows what this is? Maybe it's called that in Europe, but there's a different name in the US? Usually doctors offices and labs over here reference the color of the top of the tube - lavender, tiger top(orange & grey striped), etc. Any ideas out there?
    Thanks!
    Lannie
  17. lansbergen

    lansbergen Senior Member

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    http://www.fda.gov/MedicalDevices/P...rances/Recently-ApprovedDevices/ucm078637.htm


    The PAXgene™ Blood RNA System is used to collect a patient’s blood sample and isolate RNA (ribonucleic acid) so it can be used in diagnostic lab tests. RNA is a molecule found in cells that translates genetic information from DNA to proteins produced by the cell. RNA can be used in lab tests to help confirm or rule out a suspected disease or condition.

    The PAXgene™ Blood RNA System is made up of a plastic tube for collecting blood and a kit for purifying nucleic acid from a patient’s blood sample. The tube contains chemicals that can stabilize RNA from cells in the blood sample to keep the RNA intact for shipment at room temperature or storage for a short time at room temperature or in the refrigerator. The stabilized RNA is separated from other substances in the blood with the purification kit. The RNA obtained using this system can be used for reverse transcriptase polymerase chain reaction (RT-PCR) in in vitro molecular diagnostic lab tests.

    How does it work?

    * A patient’s blood is drawn into a plastic tube containing the stabilization solution
    * RNA in the cells of the blood sample reacts with the chemicals in the stabilization solution.
    * The chemicals prevent RNA from degrading when the blood sample is stored at room temperature or 4C for several days, or at -20 or -80C for several months.
    * Using the purification kit, the stabilized RNA from the patient’s sample is separated from the other component of the human blood.
    * The isolated intracellular RNA can be used for RT-PCR in in vitro molecular diagnostic lab testing.

    When is it used?

    The PAXgene™ Blood RNA System is used to help a medical professional obtain high quality intracellular RNA from whole blood for use in RT-PCR in vitro molecular diagnostic testing.

    What will it accomplish?

    The PAXgene™ Blood RNA System could standardize and improve the quality of intracellular RNA from patient’s whole blood drawn in the doctor’s office or diagnostic lab.


    http://www.preanalytix.com/product-catalog/blood/
  18. filfla4

    filfla4 Senior Member

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    Thanks for the update Sergio! Very promising!!! :victory:
  19. lobba123

    lobba123 Senior Member

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    hi i joined your forum because very interested with GcMAf for hbv, i am followed by international researchers in pisa (i am italian) and use of Gcmaf might be of great help tp us too since cronic hbv has the same problems as other cronic viral infections, there is no immune response towards virus, almost nothing while immune system keeps destroying liver cells.tenofovir, like for hiv, stops damage and virus but cannot help to gain immune control of infection

    is there any experience on the forum on Gcmaf and hbv?
    i have seen a friend of a memeber cleared hcv by Gcmaf, any info about it?
    our main concer with immune system activation is liver dmage to clear virus, it might be very severe without modulation or tenofovir to clear 99% virions around
    how many shots do you get per week?is gcmaf about 600euro or 1000euro per shot?
    what do you think about the safest supplier (costs are not a problem)?

    reading about immune tests, vitamin D problems are similar in hbv cronic infection, almost all vit d severely deficent in inactive form.
    immune system while off antivirals similar to yours, low lympho, low white cell count especially on those with a lot of immune tollerance to the virus

    thanks for your help
  20. filfla4

    filfla4 Senior Member

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    Hi Lobba, I'm afraid I don't know anything about GcMAF and HBV. I get 100 nanograms by I.V. weekly. The price was around Euros 450 for 12 doses. (Please correct me Sushi if I'm not right with the price!) I am under the care of Prof K De Meirleir in Brussels and I get this directly from his clinic at:

    Himmunitas
    De Tyraslaan 111
    1120 Neder-Over-Heembeek
    Tel: 02 266 87 40
    Fax: 02 266 87 50
    Email: info@ehmb.be

    Good luck!
    filfla4

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