1. Patients launch a $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!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Gcmaf-reactions and side effects

Discussion in 'GcMAF' started by Samina, Jul 27, 2011.

  1. Samina

    Samina

    Messages:
    9
    Likes:
    0
    I tought it could be an idea to have a seperate thread on side effects during Gcmaf treatment-to share our experiences and learn from each other. There seems to be some signs/symptoms that might be telling is that it works while others are indicators to reduce the amount or stop treatment for some time.

    Personally I started Gcmaf 12 days ago and have so far only taken 1 small dose 1/4. First few days I had a sore throat, but about 5-6 days after Gcmaf I started to have pain in my back-especially lower back around the area from my kidneys and further down. At times burning and at other times just pain. I got worried about my kidneys, but took bloodtests a couple of days ago and was told today that everything is fine.

    Has anyone else experienced a similar pain/sensation in their back? i am by the way a high responder with extremely low Prpc.
  2. janey

    janey

    Messages:
    31
    Likes:
    1
    Melbourne, Australia
    Good idea, Samina. Do you think perhaps flu-like symptoms may be ok, but having severe sleep problems as a main reaction may be more problematic?
  3. Samina

    Samina

    Messages:
    9
    Likes:
    0
    I did ask specifically about this when I started Gcmaf, and was told by KDM and th nurse that headache and insomnia were signs to look out as this would indicate that the body had problems tolerating the treatment. I have heard that flu-like symptoms, fatique and pain might be good signs...

    But I wonder what other symptoms might be an indication of - in my case the burning sensation in my back as well as sensitivity to light which I have never experienced before - and other people experience nausea, increased brainfog +++. Good or bad signs? I guess we all react very different and it is hard to tell.
  4. sphynx on roundabouts

    sphynx on roundabouts

    Messages:
    68
    Likes:
    5
    Hi Samina,
    someone on the long maf thread said her husband had that burning feeling all down his back while he wataking maf. I get a bad feeking in the kidney area. My kidney results are allnormal so I dont know about it.

    I have had bad breast pain and stinging since starting maf. The pain goes into under arm sometimes too but mostly in lower breast. I get groin pain too. It would be a great help if anyone could tell me if they felt anything similar or whether its normal or not while on gcmaf.

    Thanks,
    Sphynx on roundabouts.
  5. Samina

    Samina

    Messages:
    9
    Likes:
    0
    Thanks for sharing in re to burning sensation. How long have you been on Gcmaf? What I find strange is that this pain/burning startet after just 1/4 dose of Gcmaf-at least my body is reating to Gcmaf. Just had my second dose today.

    Hope someone have some experiences to share in re to your new symptoms.
  6. Tobermory

    Tobermory *****

    Messages:
    2
    Likes:
    0
    I would firstly check to see if you are in fact receiving genuine GcMAF so please find out the source of the GcMAF and see if it has been assayed.

    Many of the symptoms mentioned on this forum do not appear to relate to GcMAF but possible Vitamin D intoxication (google it).

    It is advisable to have healthy levels of Vitamin D when taking GcMAF so take supplements or spend more time outside in the sun, if you are advised not to take Vitamin D during the course of GcMAF then ask why not.
  7. Samina

    Samina

    Messages:
    9
    Likes:
    0
    I have been puzzled by the very strong reaction I got after the 1st Injection-as described above intense burning/pain in my lower back i.e. I decieded to postphone my 2nd injection for a week due to this, and I have so far taken 2 doses at home -SC- and have hardly had any reaction at all.

    Do you know if IV is much more effective?
    Am wondering if this is the reason why the reaction was so strong...If it is more efctive to do it IV - does that also mean it is working better this way?
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,415
    Likes:
    5,162
    Albuquerque
    Hi Samina,

    I took my first 13 injections IV. I didn't get the burning that you describe but did ask what the difference was between getting GcMAF IV or subcut. (I have been taking it subcut since the first 13).

    The nurse said that when you take it IV it just gets into the system faster but the overall affect would be the same taking it either way. So maybe getting GcMAF into your system "all at once" by taking it IV gave you a stronger initial reaction, but apparently this does not mean it is working more effectively.

    Glad you have done fine with the subcut injections.

    Best wishes,
    Sushi
  9. Overstressed

    Overstressed Senior Member

    Messages:
    401
    Likes:
    126
    Belgium
    Hi there,

    I read here often about vitamine-D intoxication, but my little experience by adding vitamine-D while on Gc-Maf has the opposite effect. I have a HUGE increase of energy, and maybe the biggest difference: I don't run to the toilet as soon as I drink something. And also: I'm just back from holiday - two weeks bathing in hot sunny weather- and I have a tan, that is not normal for me. I noticed this last year too, and the only reason I can think of is Gc-Maf.

    Best regards,
    OS(aka 'brownie' :D )
  10. froufox

    froufox Senior Member

    Messages:
    396
    Likes:
    65
    Hi all

    Ive just started injecting from a brand new batch of GcMAF...the vials have a blue top on them as opposed to the clear white one on the older batch. When I did my last injection, last week, I got a headache immediately after I had done the injection....i dont think that Ive ever got a headache after any of my injections, or maybe just the very first one but generally not at all. I only did 1/5th of a dose again, and I'm still injecting just once a month.

    Anyway since i did my injection on Monday of last week, Ive relapsed terribly with really intense side effects, particularly severe depression every day with huge adrenal crashes almost every day. Have also felt very inflamed in my head. So, I'm wondering if its because the Gcmaf in this particular batch is stronger? Has anyone else had a similar experience? Wondering what other people think about this, if some batches are stronger than others, or if the formula has changed?

    Thanks
  11. daniariete2000

    daniariete2000

    Messages:
    74
    Likes:
    6
    Does anyone suffer from burning mouth syndrome ? I have a riacutization of it after 4 shots of GcMAF but I'm not sure Gcmaf can be the cause. Do you know if immunostimulators can cause damage on the nerves's myeline ? I'm very afraid since I have a lot of pain on my mouth ?

    Thanks

    Daniele
  12. baccarat

    baccarat Senior Member

    Messages:
    188
    Likes:
    80
    Daniele,
    I'm sorry to hear you're going through such a rough patch. It sounds awful!
    Have you talked to your dr?
    It seems like inflammation out of control. I don't know whether immuno stimulators can damage nerves but they may increase inflammation. Not sure whether they could trigger autoimmune responses.
    I don't know anything about GcMAF but I thought that you may want to protect your nerves with B12, folic acid, some B6 etc. more info on this in the methylation section.
    I'd also ramp up some antioxidants to help the nerves. I presume Vit C, Vit E and lipoic acid which I believ it's been used in Germany to reverse neuropathy in diabetic patients.
    Hope you get better soon!
  13. Samina

    Samina

    Messages:
    9
    Likes:
    0
    Hi there,

    My mouth is not burning, but as I've mentioned here earlier my back has been 'on fire' since my first Gcmaf injection. I had to stop Gcmaf 5-6 weeks ago due to insomnia which hit me hard after my 7th injection - the burning sensation is slowly fading, but is still there at times. Luckily I am sleeping again too!

    No good advice, but to me it seems Gcmaf can cause a lot of strange reactions...
  14. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    I'm not on gcmaf, but very interested in how it is to tolerate. I started nexavir for a few days (working up to gcmaf) and got intense pain in stomach and fingers and rash. Can people say if they are also on nexavir, and what anti-inflammatories they take.
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,415
    Likes:
    5,162
    Albuquerque
    I inject Nexavir and initially I experienced what felt like die off. I am now working up to the normal dose and tolerating it. My side effects were definitely not inflammatory.

    Hope this helps.

    Sushi
  16. daniariete2000

    daniariete2000

    Messages:
    74
    Likes:
    6
    This is the KDM's question and answer :

    QUESTION: I suffer from burning mouth syndrome since 2 years. This burning sensation (like chili on my mouth) occurs 2 or 3 times during the year. Now it's 1 month that I'm taking GcMAF (4 injections) and since yesterday I have very awful burning on the mouth. I'm not sure that GcMAF is the cause and I would ask you if GcMAF can contribute to sensitize the nerves on my mouth (like demyelinization). It's not clear if is an infiammation problem becouse my dentist doesn't see any signs of infiammation on my mouth. I kindly ask you what I have to do and your opinion about this. I'm very afraid now about this....

    ANSWER : yes it could be related to 1,25 Vit D toxicity. Lower dose of GcMAF
  17. lobba123

    lobba123 Senior Member

    Messages:
    250
    Likes:
    18
    researchers said that gcmaf might awake latent viruses in order to expose them to immune system clearance, this might be the case

    yes it could be related to 1,25 Vit D toxicity....

    this is very strange, gcmaf has nothing to do with vitamin d.
    on gcmaf.eu version we are using vitd3 10000iu daily to get vitamin d25oh to high levels 50-100ng/ml and nobody had problems with vit d
    vitamin d is also of most importance for gcmaf response

    have you checked your vit d25oh and vit d1.25 levels?

  18. lobba123

    lobba123 Senior Member

    Messages:
    250
    Likes:
    18
    if you can afford one vial of gcmaf.eu, 660euro, i'd suggest to lower or stop kdm gcmaf to resolve this inflammation and then try gcmaf.eu

    if we avoid considering the gcmaf cost one thing is absolutely clear, gcmaf.eu has shown extremely rare cases of inflammation and no effects on vit d at all since all patients are on heavy dose vit d supplementing

  19. daniariete2000

    daniariete2000

    Messages:
    74
    Likes:
    6
    KDM seems not agree too much with supplementing vit d becouse it make 1,25 vit d worse (too hight level)

    My level of vit d 25 oh is quite low 26 [10 -100] but my 1,25 vit d is too high (over the upper limit) .

    I asked KDM if I had to supplement vit d and he answered me not becouse of 1,25 vit d problem..

    P.S. How can you say that GcMAF doesn't work on vit D ? GcMAF is the protein that work as vit d receptor and it works directly on 1,25 vit d

    Bye

    Daniel
  20. xrunner

    xrunner Senior Member

    Messages:
    536
    Likes:
    191
    I'm following this thread with interest as I haven't found much information around about the side effects of GcMAF. It's quite helpful, so thanks for posting.

    Daniel,
    Couple of years ago I looked quite carefully into the Marshall Protocol. I remember that a 25 too low concurrently with a 1,25 too high, is said (by Marshall ) to be a typical sign of a dysregulation in the metabolism of Vitamin D and that Vitamin D receptors are stuck, which suppresses the immune system.
    They say that the cause of this is due to intracellular cell wall-deficient bacteria, or L-form bacteria. The protocol was designed to iron out this imbalance by cutting out every source of Vitamin D and get the immune system working again which it does when it can recognise and destroy such bacterial forms. The protocol uses Olmesartan as the supposed agonist for Vitamin D receptors.
    I assume that GcMAF does something similar by working as an agonist of the Vitamin D receptors therefore unstucking the metabolism of 1,25.
    The result is an activation of macrophage activity, bacterial killing and related release of toxins and inflammation (they call it immuno-pathology; http://mpkb.org/home/protocol/immunopathology).
    There are remedies that can easily calm inflammation down but the question is whether that approach compatible with the meds that you're are taking and which in any case your doctor should know about.
    alice likes this.

See more popular forum discussions.

Share This Page