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

[Daffodil]

if i have more energy on gcmaf, it has to mean the inflammation is lower (ie..the infected cells are getting destroyed). if my energy keeps getting better, it will mean the inflammation is getting even lower. so it HAS to follow that the brain fog will clear, too, eventually, right? i mean....unless its a completely different disease process up there, which i do not think is the case. so ver time, doesnt the fog HAVE to clear if my energy is improving???

i am really worried cuz i have heard of HIV+ people who have dementia and still no HIV in blood and they are well otherwise. that could happen in CFS too maybe. but then those people have not tried gcmaf....

ugh. i wish there was an easier way to repeatedly test spinal fluid and see whats going on in my head...cuz its really bad.

 

[CindyWillis]

thanks, cindy, for your input. helpful to hear that.

one thought, tho: when comparing the different sources of gcmaf, we need to state how large a dose we were on for each source, how often we were taking it and the method (subc, IM or IV) -- otherwise the comparisons are not going to be accurate.

for example, maybe cindy (or anyone) reacted so strongly to one dose over another because of a different amount she took, or a diff method of application (like subcu vs IV)? just some thoughts.

rrrr

Good thought. Here is some more information. 25 of BGLI for 1 year, 25 for first month raised to 40 of GCMAF.eu over next 1 1/4 months and 50 for first three weeks raised to 80 Dr. DeMelier over next 2 months. All IV once a week.

 

[Daffodil]

hi all. still feeling bad from the o.18 "overdose" last friday. brain fog/inflammation so bad i cannot sleep.

i guess i will be waiting a while to take it again.

received metametrix kit for stool testing. feeling skeptical but will do it.

xoxox

 

[Daffodil]

hi all. so, as you probably know, i took a slilghtly larger dose 10 days ago - 0.18 ng instead of 0.15, and had a very bad time. I didnt take the gcmaf this week.

thing is, i still feel pretty inflammed but i am just not sure if its from the gcmaf-induced inflammation or if its just from the CFS....or maybe i feel bad cuz i didnt take gcmaf this week!. i cannot tell. its very confusing. my fog is horrible so it makes it all even harder to make sense of. my chest pain seems better...that comes on when inflammation is very bad.

i kind of feel like taking a dose now, maybe 0.1. what do you guys think?

thanks!!

 

[cigana]

I have a question about KDM's treatment. I have just had my first appointment with him. When I come back for my follow-up consultation (in about 1 month I believe), might he prescribe GcMAF then? The thing is I would need to therefore arrange for a cooling case and ice packs in advance, since I travel from the UK, really I need to know before because presumably they don't also sell you the cooling case + ice ?? Really what I am asking is should I get these things and take them to my next appointment with him? Thanks.

 

[Rrrr]

hi daff,

if you do another shot of gcmaf now, you'll likely feel like you did before, when you did 1.8 cc, only worse. and it could last a lot longer. i do not suggest you do more until you feel "normal" again. this is a strong suggestion, almost a plea.

i've been waiting 1.5 months now to do my next gcmaf shot because i'm waiting to return to "normal" first, since my last shot (and over-exercise) experience.

i think the gcamf accumlates in teh body. so each shot can have more of an impact than the last -- this is my personal experience.

 

[Rrrr]

cigana, i have private messaged you on the kdm question.

 

[Daffodil]

thanks rrrrr. i will wait it out. but i am not sure i can tell when i am at baseline anymore. i think i am at it now, or near it. i mean...so hard to distinguish between awful, slightly less awful, slightly more awful lol

do you still consult with any doc? KDM?

apparently gcmaf stays in the body only 6 days but i guess its effects must last much longer...

ugh i was so hopeful 2 weeks ago and now....ugh

xoxoxo

 

[Sushi]

When I come back for my follow-up consultation (in about 1 month I believe), might he prescribe GcMAF then? The thing is I would need to therefore arrange for a cooling case and ice packs in advance, since I travel from the UK, really I need to know before because presumably they don't also sell you the cooling case + ice ?? Really what I am asking is should I get these things and take them to my next appointment with him? Thanks.

Hi cigana,

I hope your next appointment is in more than a month because some of the significant labs take longer to come back and he might want to see those before prescribing GcMAF or not. If it is in a month, you might call them and ask if you should make it later to make sure the labs are back.

And, I use a thermos flask to carry GcMAF (with ice). You could just tuck a small one in your luggage "in case." I use a small steel one that won't break.

Best wishes,
Sushi

 

[cigana]

Thanks Sushi. How long do the labs usually take then? I was very pleased with the list of tests KDM arranged for me.

 

[Sushi]

Thanks Sushi. How long do the labs usually take then? I was very pleased with the list of tests KDM arranged for me.

Hi cigana,

Since he sends blood etc., out to a variety of labs, the time varies. I'd imagine he had you do the metagenomic stool test from RedLabs. That one can take 2 or 3 months as they send them out for analysis in batches of 100 and it depends on whether they are ready to send the next batch out when they get yours. Mine took over 2 months. Also, the nagalase test can take 6 weeks to 2 months--though they may have improved on that time by now.

Then he has to analyze your test results and make a treatment plan. I'd call them and ask for advice about the next appointment date. Realistically, not much is going to be back in a month.

Best wishes,
Sushi

 

[Daffodil]

i have had a good 2 days. less inflammation, more energy. still a very long way to go but feel positive.

clearly, i should not raise my gcmaf dose above 0.15 for a long time. at this dose, things seem to be going in the right direction. i owe a lot to those who warned me not to push through the side effects of a higher dose..i would have just kept right on increasing it, if left to my own devices.

my mother is noticing that i have been talking more and being a little more argumentative....looks like a bit of my old personality is coming back lol

i am a little worried about my high 1,25-vitamin-D levels. i will have new results monday.

 

[sprankel]

Good to hear daffodil!

 

[Daffodil]

i went for a walk today. i walked very slowly but it was a fair distance. i went into a book store and found myself reading the jackets of a couple of novels that looked interesting.....a month ago, i don't think i could have read a dr. seuss book.

i feel very worn out right now and think i will pay for my walk a little, tomorrow.

i am so happy about gcmaf.

 

[sprankel]

That's great daffodil!
But please be carefull, don't overdo.

 

[ukxmrv]

So really pleased to hear about your progress Daff!

 

[Daffodil]

thanks, all

i got my bloodwork....seems my vitamin D results are normalizing, too.

The last 25-D was 34 and it is now 48 (still low but coming up). The last 1,25-D was136 (high) and it is now 96 (normal). I am not taking vitamin D supplements.

 

[sprankel]

That's good news about the vit D.
Nice that 1,25-D is going down

 

[Daffodil]

http://www.alibaba.com/buyofferdetail/103772471/Biochemical_Laboratory_Injections_Preparation.html

 

[LesleyH]

In case anyone is interested, GcMAF from gcmaf.eu can now be bought using a credit card over the phone, so the system is so much easier now than having to do the bank wire transfers