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

[Daffodil]

so my inflammatory problems continue. yesterday, most of the day was spent with the most severe diarrhea i had ever experienced in my life! i was literally screaming. eventually, i could take no more, and took 3 imodium and it worked.

today, i have awakened feeling horrible, with my head as bad or worse than when i started GcMAF. dear God, please let this be temporary!!!

 

[suzanne]

Hi Maryb, Forebearance and Sushi...

Thanks for the encouragement and support around the issues of dosing and sorting out as sustainable program. I have had to learn the hard way ( trial and error) that even the smallest doses of immune stimulation products ( transfer factor and thymus) can cause me to exacerbate my symptoms for days if not weeks/ months.

I am excited tat the olmetec from the MP seems to be having an anti-inflammatory effect and 6 days down the track I have not had one migraine- this is amazing for me and as good as going on holiday.

As you say Sushi, we really dont know how the KMAF works but I take your point about the activation of macrophages and it may be in my interests to start with dosing twice a week, say one drop at a time, and see how I am over a few weeks. After this 3 month period of no GcMAF, I now realise it is considerably easier ( and less painful) start a lot lot slower and then titrate up.

I hope in the future that there will be people that might benefit from our experiences and not have as much trial and error.

Thanks again guys. And well wishes to you all in your journey towards wellness. S

 

[Sushi]

so my inflammatory problems continue. yesterday, most of the day was spent with the most severe diarrhea i had ever experienced in my life! i was literally screaming. eventually, i could take no more, and took 3 imodium and it worked.

today, i have awakened feeling horrible, with my head as bad or worse than when i started GcMAF. dear God, please let this be temporary!!!

Hi Daff,

Could there be other causes for this diarrhea -- anything else you are taking eating? This sounds more like a gut issue? IB?

Sushi

 

[alice]

Daff wrote "so my inflammatory problems continue. yesterday, most of the day was spent with the most severe diarrhea i had ever experienced in my life!"

Daff, do you think GcMaf might contribute to your diarrhea? Reason I ask is that I had been battling pretty severe diarrhea for about 2 months - it is some better now. I've been on GcMaf from BLGI (Netherlands) since Aug.. and maybe there is a connection, altho I had not made a connection with it. I takeGcMaf sublingually and am still at 0.1 ng. Overall, I seem to be okay with it except for severe fatigue the second and third day after dosing.

I just had a colonoscopy and the biopsy showed that I have ulcerative colitis, so that is surely a causative factor for the diarrhea. So for me there is an inflammatory and auto immune factor there also..

I'm just trying to sort things out. I have also found that curcumin makes matters worse, so I have stopped with that.

Hope you feel better soon Daff. It gets so discouraging.

 

[Daffodil]

hi all. yes..i always thought that inflammation makes one have diarrhea......and i have had either diarrhea or contipation since i began gcmaf.

i am very sorry about your ulcerative colitis! damn. i hope that eventually, the improvement in CFS results in that getting better as well. my aunt has that also. bowel problems run in our family.

sushi....yes this diarrhea was different...it was so horrible ....maybe it was some old fried tofu i ate the day before....or some crab i had eaten....i have been trying to eat more meat lately.

i do have IBS but it is mild.

i am gonna jump out the window if my brain fog doesnt improve soon. i have HAD IT. this is clearly all in the spine..this disease....i can feel weird things in my brain stem/neck and lower back....those are where the herpes viruses live..in those nerve bundles...what are they called again...fking fog

xoxoxo

 

[maryb]

Daff I feel so sorry for you - I too have the same symptoms in my head/neck and lower spine - its an ongoing daily battle with it all. EBV and CMV are the 2 that I've tested high titres for consistently so I agree for some of us the virus is entrenched in these areas.
Every movement is controlled by these areas and its so damn hard to cope with. The only thing that works for me is chewable aspirin, and no it isn't for everyone - I know I'm probably ruining my stomach lining and every doctor I've seen has told me that - but its the only thing that gives me relief - and only then only sometimes.
I've been looking at Famvir for a while or acyclovir long term, but am still waiting for a period where I can just go for it and take the side effects which I know I'll have, some people have had good results with them though.
What does Dr Enlander say about the symptoms?

 

[Daffodil]

hi mary. i am sorry you are going through the same thing. if you have high titres then you should take the antivirals! i would 110%. the side effects arent bad at all and you only get worse for a while.

the weird thing about me is, my titres are never high. also, i have been on both valtrex and valcyte for 3 yrs, and they did not help. so i just do not know what to do.

part of me wants to give famvir a try because i have never tried that particular one.....the local doc said no but maybe i can convince him later on.

i dont understand any of this. i hope lipkin finds something. how long can one live with no life

 

[heapsreal]

Daff i know u have said that your viral titres are low but latest research seems to lean towards viral titres not being a good indicator of severity of illness, also need a good immune system to make viral titres. I know u have done av's before but i think its probably still an issue for you as well as some other unknown issues. There are other ways to get famvir, magicpharma.com . Maybe just maybe if antivirals can lower your viral load some then u could tolerate the MAF better, reduced inflammation from it??

For gut and GI issues look into sacchromyce bouldarri as its effective for diarrhoea and inflammation of the gut. I cant think of the particular antibiotic off the top of my head but its the one KDM prescribes for gut issues could also help, sushi?? u remember the name?? I would also be tempted to use doxycycline for a few months for other unknown bacterial infections u might have, they say the longer you have cfs/me the more infections one has, chuck the kitchen sink at it, again.

cheers!!

 

[Daffodil]

thanks heap!

i did try doxy long ago, with no response. i also had all the latest PCR and culture testing on my blood..no herpes virus was ever found. i am also a little reluctant to take those antibiotics unless i know i have overgrowth of something ..i heard they can make one pretty sick.

i wonder if i can find a good gut doctor. my old dr., dr. galland, specializes in that and perhaps would be a good guy to connect with again. then i can send away for the metametrix stool profile and he can read the results.

the only problem with that is, the test plus doc fees would run me over $1000. lately money has been a big worry for me and i just cannot keep getting that nk cell function test either ugh, which i now have to cross the border for so thats another couple of hundred! (since nevada stopped doing the test)

xoxoxo

 

[maryb]

Daff I think heaps means - xifaxan for the gut - it just works there doesn't go around the body like other a/biotics.

 

[heapsreal]

Daff I think heaps means - xifaxan for the gut - it just works there doesn't go around the body like other a/biotics.

thanks mary, spot on

 

[Daffodil]

thanks all.. so i have decided to get that metametrix gut profile test and hope that it is similar enough to the one that DeMeirleir does.
i really appreciate the help
xoxoxo

 

[Sushi]

Daff I think heaps means - xifaxan for the gut - it just works there doesn't go around the body like other a/biotics.

He does prescribe xifaxin for some (and yes it is confined to the gut), but he also prescribes others depending on what shows up in gut tests...but, from what I've seen, he doesn't prescribe ABX that go systemic, for the gut.

Sushi

 

[Xandoff]

i am gonna jump out the window if my brain fog doesnt improve soon. i have HAD IT. this is clearly all in the spine..this disease....i can feel weird things in my brain stem/neck and lower back....those are where the herpes viruses live..in those nerve bundles...what are they called again...fking fog

Daff,
This is exactly how my spine feels, I have same stuff. I take 60 mg of Cymbalta and have for the last seven years! It helps, but never enough.

 

[heapsreal]

tramadol is something i have found helpful for back and neck pain, slow release version i use but its not to be used if on an antidepressant.
Descent pain relief i think is needed sometimes to give us some respite from this condition. In conditions like shingles, pain relief is important as it reduces the damage done to the nerves in the long run not just respite from pain. I think this can happen with other herpes viruses too.

 

[Carla-nl]

Hi Daffodil, have you tried an anti histamine for the diarhea? May sound odd, but it works often.
Use clemastine (OTC) if you can.

And yeah, i'd try to find a doctor. Gc-MAF is not an off the shelf product, it needs tailoring per individual and often it requires co-treatment with prescription medication. Else it simply won´t work.

 

[Daffodil]

thanks, all. i do have a doctor, Dr. Enlander, but I havent consulted with him in a while. money is becoming a bit of a problem for me.

i know the back pain is from the GcMAF, because i get that only with GcMAF-associated inflammation...so i guess i will continue to wait until that is gone before i take another GcMAF dose.

has anyone here had improvement in brain fog by treating bacterial overgrowth in the gut?

thanks
xoxoxo

 

[Carla-nl]

The anti histamine helps to modulate the inflammation without taking away the good parts.

Brain fog is for me a result of infections. Wherever they may be. If that has not cleared up at all on the gc-maf something weird is happening.

 

[Daffodil]

hi carla. i cannot say its as bad as before because before, i was crying and wanting to kill myself all the time...so the fog must be a little better, but still very bad. no one finds any infections so maybe this stool test might show something.....the diarrhea has subsided for several days now....
thanks for the advice.

 

[ukxmrv]

Hold on there Sue, and please keep posting.

We are all here for you.