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

[suzanne]

Hi Daffodil,
I too experienced severe back pain and increased head and neck pain after being on the GcMAF about 4 weeks.
There is no dr here in Aus that is very familiar with the GcMAF and so I took another dose at the 4 week mark just to test whether this really was the culprit.- BAD idea.
I spoke extensively with Sushi (thanks sushi!) and like others have said here- it is really important to stop the GcMAF until the inflammation subsides and then start again at a much smaller dose.
I am at week 4 and my back pain is still subsiding - but at least it is no longer intense, but my neck pain is still quite bad. I reckon I am going to wait another few weeks before I start again- with maybe a ridiculously low dose of 5 nannograms- I started on 20 nann. and had the same issues you seem to be facing. Like you, I never had this back pain symptom before - mainly I have head problems- headaches and migraines - so the back pain was a surprise and I know what you mean about how severe it can feel. It am sure it will subside if you stop the treatment for awhile.

regards

Suzanne

 

[Daffodil]

Hi Suzanne. Thanks for that info. Your experience sounds very similar. I will not take another dose for a while. Are you doing better overall on the GcMAF?

xoxoxo

 

[natasa778]

I am wondering if indometacin or a similar prostaglandin inhibitor might be helpful here. I mean for the pain and overall GcMAF inflammatory side effects?

http://www.ncbi.nlm.nih.gov/pubmed/2957206

 

[Daffodil]

hi all. got some bloodwork back. eGFR at 58, consistent with moderate kidney disease if results are similar for 3 months.

ferritin at 9, deficient

B lymphocytes high at 0.84, normal range 0.08 - 0.52...pathologist comment: "increase in B cells"

I will have NK cell function results in an hour or 2 hopefully.

Looks like I have gone downhill and this could be due to stopping Tenofovir. I feel totally awful. I was going to wait until my EBV and HHV6 antibody results come back, but I might talk to Dr. Enlander and re-start Tenofovir soon.

 

[Daffodil]

i'm kind of thinking i have leukemia. increased cd19 and severe low backpain ?? maybe its that!

 

[Overstressed]

i'm kind of thinking i have leukemia. increased cd19 and severe low backpain ?? maybe its that!

Hi Sue,

With such a minor increase you can't have cancer. Before I started gc-maf my cd19 were also on the rise, but it came down while on gc-maf. What didn't come down however, were mine lymphocytes.

You should talk to your doctor, about Tenovovir, because hiv-specialists say once start ARVs, you should not quit.

Best wishes,
OS.

 

[Daffodil]

Thanks OS. there is no doctor who knows anything! whom can i ask?

i am getting worse everyday! what is happening????? the same labored breathing is coming back..the same throbbing all over, feeling that i am about to die..only this time it is accompanied by excrutiating back pain! w t f

i KNOW this isn't "die-off".

 

[Daffodil]

so i spoke to Dr. Enlander. EBV EA IgG: 1:160, EBV IgG NA: 1:160, EBV IgG VCA: 1:640.....HHV6 IgG: 1:160
M. Pneumoniae: 3.26

These are not very high.

His suggestion is to stop GcMAF for 2 weeks, add Tenofovir back in for 4 weeks, see what happens. Then, add GcMAF back and continue on Tenofovir...damn i hope thats what he said. the fog is severe.

i said why not look at gene expression before and after tenofovir but he said it doesnt help everyone.

personally i think it would give most people a boost if everyone tried it.....but i certainly dont recommend that cuz now apparently i am stuck on it forever!?

 

[Daffodil]

my NK cell function is 6. down from 65. i have to now assume tenofovir + gcmaf was working and gcmaf alone was not and tenofovir alone was not (on tenofovir alone, my NK cell function went down to 13). no wonder i feel so awful.

 

[ukxmrv]

Can you afford to keep taking the Tenofovir Daffodil?

(I know it's a terrible though having to stay on a drug for ever (or at least a long time)

 

[Daffodil]

hi uk. this depends on how long they let me keep my insurance. i think there is some program here that if your doctor prescribes it, they give it to you without asking for proof of HIV status..but i am not too sure about that.

i dont know now if i will wait until the week is up to restart it. i am in SO much agony right now, having suicidal thoughts. etc.. i dont see the point in waiting, especially with my NK cell function at 6. this is obviously not related to anything else but worsening of the disease. and let me tell you...this is not a normal worsening either. this is as if it is coming back stronger than ever.

really..it is looking entirely hopeless for me and ..well i had better not complete that thought.

 

[Overstressed]

hi uk. this depends on how long they let me keep my insurance. i think there is some program here that if your doctor prescribes it, they give it to you without asking for proof of HIV status..but i am not too sure about that.

i dont know now if i will wait until the week is up to restart it. i am in SO much agony right now, having suicidal thoughts. etc.. i dont see the point in waiting, especially with my NK cell function at 6. this is obviously not related to anything else but worsening of the disease. and let me tell you...this is not a normal worsening either. this is as if it is coming back stronger than ever.

really..it is looking entirely hopeless for me and ..well i had better not complete that thought.

Hi Sue,

don't even think of suicide, we only have one life, how difficult things are at some moments. I documented here, a few pages back that I experienced the same behaviour, either a new infection or a relapse. I'm doing somewhat better now, it look me half a year to get here. I stopped Gc-Maf for a while, and then restarted on half the dose. Not every week (the last injection was 3 weeks ago), I take a half dose whenever I feel the need for it. And this is whenever I feel VERY bad, not earlier. I urgently need to have my NK-cell function tested, and my Nagalase.

You now what helps me most these days? R-Alpha lipoic acid together with biotine. When my tinnitus doesn't stop from taking anti-histamines, R-alpha lipoic acid does the job. Amazingly, my connective tissue becomes stronger, especially in my legs, and almost instantly. To me it looks like whatever we have, stops replicating when I take it.

Since Tenofovir degrades reverse transcriptase, you might have a build-up of virus-RNA, which is being attacked by your immune system ? It's difficult to speculate, you should urgently find a doctor knowledgable to help you. Perhaps you have a re-activation of latently infected cells, which might explain why your NK-cell function is lowered. One would wonder when Gc-Maf comes into the picture...

Best wishes,
OS.

 

[Daffodil]

OS..thank you. you are very knowledgeable indeed!

last night, the pain was so intense i was crying and begging to die. it was in the lower back mostly...and just the overall throbbing and head swelling. i would have gone to the ER but what good would that have done.

also, my mother was asking me which meds i needed to take, and i could not answer her! i couldnt even remember the name of 1 medication!

so anyway, i re-started the tenofovir 4 days earlier than I was supposed to.

when i speak to researchers in the field, they seem rather optimistic, saying papers will be published and to wait it out....but i cannot help but think that i am doomed...that it will be more of the same and no new pathogen. i did hear that they think it will be more than 1 pathogen at play...but i guess that's not news.

 

[Overstressed]

More than one pathogen might be very well the case. I remember Dr. Ruscetti saying a (retro)virus infection never comes alone'. It might explain the difference with my wife. I transferred an infection to her, I'm 100% sure, but she doesn't have by far the symptoms I have. She began lately suffering IBS, some fatigue and forgetting things. But, she doesn't have a lymph swelling in her neck, no geographical tongue. Shortly after I infected her, her thyroid went up, but no antibodies, and she seems negative for EBV and CMV, which I tested positive for, with sky-high antibodies.

So, I expect I transferred the easiest infection to her, the difficult one(retrovirus?) was not transferred. This might explain the co-infection and/or perhaps interaction with the herpes-viruses. Anyway, it's just a nightmare...

Sue, did you once had an HTLV-test, already? I'm asking you this because HTLV might cause lower back pain, which is not exclusively for only HTLV, however.

Best wishes,
OS.

 

[suzanne]

Hi Daffodil,
You are definitely in a bad way- I understand what it feels like to want to die than face more days of pain and illness, but it will not go on with the same set of symptoms and intensity forever. But it does mess with your head.

In terms of hope, I can say, that I have had the same symptoms of back pain- really severe- and also had the head swelling feeling. I get a lot of head pain normally - but no back pain! The back pain has nearly gone though and it is about 4 weeks since I stopped the GcMAF. It has taken me the month to get back to my previous base line.

I cannot say much about whether I feel better as I have only been on GcMAF for 5 weeks and now I have had 4 weeks off. When on GcMAF, though, I had the last few days of the 1 week cycle where I had more energy- the other 4 days of the cycle I felt pretty awful. From what others seems to say, this is a normal cycle. I think for me, the inflammation built over the 4 weeks I was on the GcMAF and then I just had to stop- in fact, I couldn't even roll over in bed, so I know what you mean about the back pain- weird and excrutiating.

I am now hoping to start back up on GcMAF but will wait one more week- and then, I am going to try a dose of about 8 nonnograms- it is hard for me to measure a dose that is a lot less than this! I have gone and got some saline solution ( thank you sushi for another brilliant suggestion) and that seems to have helped with measuring out a dose that is capable of being injected. I will see how I go on the 8 nonnograms, and if that is too much I may have to go smaller again.

I will report in along the way.

I am sending you good vibes from aus. and really hope your inflammation settles soon- I am absolutely certain that you are experiencing an inflammation problem and this may take a month to settle- how long since your last GcMAF?

warmest to you.

 

[Daffodil]

thanks, all. OS. yes, i have been tested for HTLV a few times...no exposure. i did hear from a researcher that the herpes viruses will likely play an important role.
Suzanne...i dont think its just an inflammation problem. if it was, CD4 wouldnt come down and certainly, the NK cell function wouldnt go from 65 to 6. this is something else. is it possible for you to get NK cell function tested in australia?

i wonder if starting tenofovir will even help this time.

surely, if GcMAF alone was working on people, the NK cell function could not fluctuate from 65 back down to 6, could it? i mean..that wouldnt make sense, even in the presence of inflammation. if inflammation alone caused that kind of immune system suppression, even healthy people with normal infections would die.

 

[Overstressed]

I wonder -if other's might tune in- experience the same behaviour of NK-cells function ? Your hear anecdotical evidence that NK-cell function increases when on Gc-Maf, but what happens next ? Does it go down again ? Is it going down when you stop Gc-Maf ? So many questions, so little answers...


Best wishes,
OS.

 

[Daffodil]

i heard nagalase goes back up when people stop the gcmaf...so you cannot stop altogether, i think. this has to be some infection that is permanent.

 

[Sushi]

Just reporting that I did get an uncomfortable level of inflammation again, but I stopped GcMAF before it got really bad. After 4 or 5 weeks, all the symptoms of inflammation had disappeared so I took an experimental injection of 5 ngs and felt immediately "good" again. I also had significant immune activation the next day--in this case it brought out a latent sinus infection that started to drain.

Daff, your info about nagalase going up when people stop GcMAF is anecdotal--people respond differently--this is not "the norm."

Best wishes to everyone. I do think the best course when you are having severe symptoms is to take a long break from GcMAF until the symptoms resolve--whatever else you do for immediate treatment.

Sushi

 

[Daffodil]

i think even low dose gcmaf has caused kidney problems for me. my GFR was 58 and i have this new extreme low back pain. i didnt even take vitamin D with it.