1. Patients launch $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!
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.
Discuss the article on the Forums.

GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

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

  1. Berthe

    Berthe Senior Member

    Messages:
    136
    Likes:
    0
    near Antwerp
    I think it's mind-boggling indeed.
    I just wanted to let everyone know that stopped treatment five weeks ago. I have to admit that I experienced improvement but it's a bumpy road to heaven. The first eight weeks I felt worse for only two to three days a week. As a wrote in the spreedsheat I improved 20%. After week eight it went downhill and the side-effects (malaise, fever, inflammation and pain in joints) overshadowd the good effects. I decided to stop after shot thirteen (my lucky number ;-). Three weeks after my last shot I traveled to Spain, where I hit rockbottom. The PEM was horrible, never experienced before. The most worse time of my life.

    I think the build up of the MAF in my body caused the horrible inflammation and is the main cause of the pain which is still killing me. BUT and here it comes: I'm actually doing better know. I've read my first book since almost a year. I try to ease the pain with two times 150 mg Lyrica and although I don't like the side-effects of Lyrica it is the only way to get some relief.

    I'm in another climate for the moment and I hope the improvement will last when I'm back home. I also hope the inflammation will diminish over time. I don't want to go back to the MAF on a weekly basis because I already was on 1/4 dose (as a high responder and with abnormal PrPc) I would like to take it once a month. IV.

    The Gc MAF definetely did something to my immunesystem. I've head low grade temperatures for over more then ten months. Nowadays I experience them once a week. The malaise that came with the low grade temperatures also subsided. I'm able to read and to do groceries.

    Personally I think that the start dose needs to be very low and perhaps needs to stay low because of the building up of the Gc MAF in the body (and therefore the activation of the Macrophages). The building up of the MAF and the activations seemst to differ in patients. I have a friend who is low responder who experienced the same accumulation of the side effects as me after 20 shots as where I experienced this after only eight shots. She paused for eight weeks and restarted the therapy and worsened much sooner. Now she is on a monthly maintenance dose. I feel that when the patient reached a certain level of activation one needs to lower the dose to a monthly dose. Our immunesystems are 'damaged good' and not comparable to/with the immunesystems of patients with other diseases mentioned in other clinical research.

    Berthe
    With love from Spaiin
     
  2. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    951
    Likes:
    92
    read this post.. edited for sense/


    A bit off topic....but on the copper thing. DAN doc Peta Cohen in NJ has done some work in this area.

    She said that some of her patients ...autistic kids...started "blowing out" or dumping huge amounts of copper on a biofilm protocol.

    So perhaps the copper is sequestered in the biofilm?

    Google, peta cohen, biofillm. I only found the one article an ARG newsletter. It's a bit dated now. If anyone has more up to date info, I'd be interested in hearing it.

    I had a huge copper pull once on an FTM. Thing is I'm not sure if I was doing the biofilm protocol at teh time. I suspect so. I've always meant to go back to the biofilm protocol, but it made me as sick as a dog in the past.


    One other thing: some PWCs have been testing with high intracellular calcium thru Acumen Labs in Devon, UK. Is that linked to calcium channels etc...?

    I know John McLaren Howard at Acumen was looking at this....along with some physicians.


    FWIW!
     
  3. serg1942

    serg1942 Senior Member

    Messages:
    348
    Likes:
    350
    Spain
    I just moved my bottom reply to another thread called GcMAF and inflammation. I would appreciate if we could continue this subject there, as we have this sub-forum open with the goal of separating the subjects. Thanks!:

    http://forums.phoenixrising.me/show...esponse-to-it.&p=190764&viewfull=1#post190764


    Hi guys,

    Berthe
    , may I ask where are you in Spain? I live in Valencia, and in august will stay a few weeks in Cdiz Are you by chance nearby to any of these cities? :) Oh!, BTW, I will be for a few hours in Madrid next 16th, and I will go to a bar to hang out with some friends for a while, so you'd be very welcome to join us if you live there!

    Joey, I reduced the dose of B12 from 5 mgs injected daily down to 5 mgs injected every 4 days, and within 3 weeks I am back to where I was. I feel better in general. My mornings are much better, my digestion is much better, brain fog is much better, my endurance in much better, and my energy is higher as well. I would say that the more noticeable change is that I have not as many bad days as before. Actually I have very few bad days, plus, they are not as bad as they used to be. As far as the good days, they are not as good as Id like though, but they are more often than before.

    Its quite frustrating actually, as I am in a sort of in a limbo I am better enough to get bored stiff at home, but not well enough to even think of having a "decent" kind of "life" outside, more than going out for a few hours to do some errands, to the gym, or to hang out with friends, but always feeling sick

    Interesting your theory about inflammation and response to GcMAF. My C4a from before I started GcMAF was 2840. My cytokine profile was perfect though. Remember I am on 4.5 mg of LDN, and at this point I think it is helping a lot with inflammation, as I have not felt any sign of inflammation that I can tell..

    I re-tested my C4a a few days ago, and I will have its results on Friday of next week. I will let you know how it comes out.

    Best,
    Sergio
     
  4. cansado

    cansado

    Messages:
    85
    Likes:
    0
    USA
    Hello dear patients!!

    What thread this is. The power of sharing. Anyway since I lived in Brussels for a while and moved back to the US I have been a little out of touch......

    But I am back... well sort of...

    First to refresh our minds, I am a KDM patient, and was interviewed by the Dutch TV back in August of 2010.

    about the C4a: Before GcMaf it was 3283 (December 2009)
    After GcMaf (one month after) it is 10971 (a record??)

    I have been off the GcMaf now for about 3 months, and just feeling like before. Little better in the morning, but still tired. I started an other "therapy" in Europe (about 2 months after the GcMaf was stopped), and that has given me some benefits but I will report about this once I am able to get my hands on it here and restarted it for a while.

    Could someone please forward me the link to the spreadsheet?

    Thanks!
     
  5. cansado

    cansado

    Messages:
    85
    Likes:
    0
    USA
    Has anyone done the H2S test during or after the GcMaf treatment?

    Before mine was mild positive (2) and after it came back strong positive (4)
     
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,299
    Likes:
    6,376
    Albuquerque
    Cansado (Joey?),

    Maybe we should add the H2S results to the spreadsheet?

    https://spreadsheets.google.com/spr...FONGlOMXBXV3c&authkey=CIH8jqcC&hl=en_US#gid=0

    Mine was also positive (2) initially. Thanks for differentiating between mild positive and strong positive. I wasn't quite sure where a 2 put me on the range.

    Also, Let's ask to have the link to the spreadsheet be made into a sticky as it keeps getting buried in the thread. I'll write a mod with the request.

    Sushi
     
  7. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    60
    Wow Cansado..10971! Your c4a shift sounds exactly like Leonora (except her baseline was even lower). Again, the shift is more noteworthy than the actual number. Now I'm even more curious what happened with that Cheney patient's c4a that was nearly cured and is now worse than before he started gcmaf. If there's really a correlation between the rise in c4a and drop in response/tolerability the doctors need to know about it and start monitoring it biweekly.
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,299
    Likes:
    6,376
    Albuquerque
  9. cansado

    cansado

    Messages:
    85
    Likes:
    0
    USA
    According to the H2S Protea Biopharma sheet:

    There is negative of course

    Moderate positive (2-3)
    Strong positive (4-5)
     
  10. Leonora

    Leonora

    Messages:
    32
    Likes:
    0
    Norway
    I have taken H2S test both before, during and after Gcmaf. I have had negative as well as strong positive tests - NO correlation to Gcmaf. It is more correlated to if I'm on antibiotics or not, or if I have eaten something prior to the test...etc...
    KDM also says it has a correlation to the shift from Th1 to Th2....
     
  11. cansado

    cansado

    Messages:
    85
    Likes:
    0
    USA
    How about adding Leaky Gut Syndrome (soluble CD14)? Because the GcMaf should get a grip on this as well. But it is kind of tricky because once you test 3x negative then it is officially gone according to KDM.

    C.
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,299
    Likes:
    6,376
    Albuquerque
  13. undcvr

    undcvr Senior Member

    Messages:
    797
    Likes:
    133
    NYC
    Ok please don't shoot me but what is c4a and c3a ?? Just a link would be fine.
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,299
    Likes:
    6,376
    Albuquerque
    This is a "leave your guns at the door" forum! :angel:

    Here is a quote: C3a and C4a (Labcorp) are products of the complement system, cleaved from C3 and C4. These proteins are mobilized by the immune system as part of its acquired and to a lesser extent innate immune responses. These proteins can attach to unwanted bacteria and target them for destruction. These tests are sensitive indicators of a busy immune system attacking unwanted proteins or germs. These markers can provide a general sense of immune activation in the face of infection or inflammation.
    http://lymemd.blogspot.com/2009/11/what-do-those-lab-tests-mean.html

    Sushi
     
  15. vli

    vli

    Messages:
    2,052
    Likes:
    2,172
    CA
    I've been trying to enter my pre-GcMAF c4a on the spreadsheet but to no avail--for some reason Google keeps refusing to save it. So I'll just write here in the meanwhile that my c4a before starting gcmaf was 1406, so just a bit over the range. Just looking at everyone else's values, mine seems comparatively low. So hoping that my current crash is only temporary??? I have to say it lasted the whole of June but today seems to be the first day I feel I'm emerging out of it--finally able to sit in the sun (not so photophobic) and feeling a bit more mobile. It's really frustrating though because I also started feeling better after my period started so it's near impossible to assess whether my improvement is due to the onset of menses or my TRULY getting out of the crash. Hope that makes sense.
     
  16. Charles555nc

    Charles555nc Senior Member

    Messages:
    463
    Likes:
    69
    I think I posted here about feeling about 50% better on GcMAF over the first three weeks then regressing back to maybe 25% improvement.

    *New Discovery*
    I always liked retroviral explanation of chronic fatigue syndrome, so Ive always tried to add in things that are good vs aids a relative of XMRV. I tried NAC, glutamine, selenium, and lysine. Havent been able to tolerate them AT ALL.

    Since I felt so much better on GcMAF. I started going back and retrying a couple things. Still get ms like symptoms with selenium, unless its 1/4th of a regular dose. But the NAC has done something I never expected. When I was doing my next last dose of GcMAF via injection...I actually started bleeding. For those that dont know, Ive had major clotting issues when getting blood drawn and in the last 6 weeks have not bled a drop from any needle sticks (so much cytokines perhaps). I was also having massive joint pain in my neck and shoulders, that subsided alot when i started the NAC. Some aids patients took it 3 times a day, but I think once a day will be the most i can tolerate so far.

    Edit: I had horrible side effects from glutamine. Just read articles about how glutamine feeds cmv or herpes viruses, i cant remember which.
     
  17. Nabo

    Nabo

    Messages:
    92
    Likes:
    1
    Holland
    Last week i had my gastroscopy in an hospital in belgium.
    Very scary! but i servived! hhaha.

    they took biopties and they are tested in redlabs!
    hope to here soon from them.

    And my other blood tests (like c4a, cd57 etc)
    I think i get the results in 2 months.

    Now still on a break from gc maf.
     
  18. lobba123

    lobba123 Senior Member

    Messages:
    250
    Likes:
    18
    just got VDR results, FF/Bb how do you call this result:
    high/moderate to high?

    is there any data available about VDR/gcmaf response from KDM trial?
     
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,299
    Likes:
    6,376
    Albuquerque
    Hi lobba,

    Assuming Redlabs test is correct (the results have been different for a couple of the same patients using different labs), FF is a high responder and Bb would be a moderate responder. The BSM seems to be more important than the FOK.

    No data yet (that I am aware of) on the correlation that KDM has found in actual GcMAF response and the VDR results. I'm sure he has data, but I don't think he has published yet.

    Sushi
     
  20. janey

    janey

    Messages:
    31
    Likes:
    1
    Melbourne, Australia
    Here's a quick update on my GcMAF experience. I've now had 3 injections (1/5th dose) and the initial benefits that I had have disappeared. My sleep patterns have changed - sleeping more in the afternoon, but waking up more at night. I have an odd experience to report - 3 hours after my 2nd injection, a felt a wave of intense heat rising up my body, leaving me with a sensation of a burning hot face. After a couple of hours of sleep the intense heat dissipated, but left me with a hot face for 3-4 days. After the 3rd injection, I have a hot face again. So far, I'm tolerating this treatment ok, still hoping that the initial benefit I felt will return at some point.
     

See more popular forum discussions.

Share This Page