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

[Sushi]

If so, would deficient vitamin D levels play a role here as well ?

yes it does but you have to check both vit d 25oh and 1.25oh during gcmaf because it can make flares, in any case those with higher vit d had 2,5 fold more potency from gcmaf.during summer response to therapy has been found higher and this is linked to more sun which is equal to more vit d

Also, while it may be helpful to supplement D3 before starting GcMAF, it is not recommended that you supplement it while taking it--due to possible spikes in Vit D. At least this is what my doctor has told me.

Sushi

 

[greg22]

I notiecd people are testing for VDR receptor alleles. Does anyoen know what role the VDR plays with respect to GcMAP ? Does the GcMAP bind to the vitamin D that is bound to the VDR ?

Hi,

As far as I know the link between GcMAF (also called DBP-MAF) and VDR isnt fully understood yet. It seems GcMAF activates CD36 receptor on macrophages. DBP alone transports D vitamin into the cell which activates the VDR. I have read somewhere that GcMAF complexes with D vitamin.
However Yamamoto and KDM disagree on testing VDR polymorphism for gauging GcMAF responsiveness.
More info here: http://www.cfscentral.com/2011_01_01_archive.html (go to Wednesday, January 19, 2011 post on the page)

 

[vli]

Ive been very similar to Garcia in that the GcMAF has very much affected my mood in a negative way tho...even at lower doses I get the blues or on some days pretty bad depression, which is partly why I havent been posting an awful lot recently, aswell as for other more personal reasons.

Just wanted to say I'm struggling really hard with the depression too.

 

[Sushi]

Just wanted to say I'm struggling really hard with the depression too.

I didn't have depression but when I was taking a whole vial a week, I had a ghastly nightmare every night. When I cut back to a half dose, they disappeared. When I told this to KDM, he nodded as if this made sense. So maybe, vli, try a lower dose? I don't remember what you are on now.

I seem to be doing well on the half vial and KDM said to stick with it. As Garcia and Frou mentioned, the effect of GcMAF seems to be cumulative--or at least my patterns of response have changed. The first few weeks I could count on having to lie flat on the 5th day after the injection. Then the next day I would be fine.

Later, it was the 2nd day after the shot and maybe another "tired" day later in the week. I am not getting so much variation now after 15 shots. Also my good days are good--hardly know I have something wrong. I do need lots of sleep, but am not have trouble with insomnia. I am taking LDN too and that has helped with sleep.

This is all a bit hard to quantify on the spreadsheet, but I'll go in and update. I will be adding Nexavir and an antibiotic (gut infections) an probiotics soon.

I got my food sensitivities tests back and that means cutting my strict diet further. I am very reactive to eggs, almonds, soy and all other legumes! Ah, well....

Best,
Sushi











Fascinating roller-coaster with no map!

 

[Chris]

Sushi, you have my sympathy--I have been experimenting with foods (already on a very low fat basically vegan anti-atherosclerotic diet -last cholesterol reading--with VERY low Lipitor dosing--was 112 total, 59 L, 39 H)--and know I respond badly to most legumes, but seem OK with fermented soy--i.e. miso and tempeh. Have you tried those? One has to eat something!
Best, Chris

 

[globalpilot]

I would have thought a high levelof nagalase would predict success since it is what interrupts the production of GcMAF.

also on "no poster girl"'s blog, she wrote:

"A normal result on the nagalase test would be a value of zero to 1.0. Thus far in [cheney's] practice, the results have ranged from 1.1 to 6.5.
He explained that hed found that nagalase level predicts response or non-response to the standard GcMAF protocol . People below 4 respond; those above 4 do not. This can be gotten around, he told us, by doubling the dosage of GcMAF, and, interestingly, by increasing the bodys supply of vitamin D through sun exposure or a tanning bed (GcMAF is also called Vitamin-D binding protein)."

i found this interesting. my nagalase was 1.90, i think (i have to go check).

also, i thought cheney was telling folks to STOP taking vit d while on gcmaf??? that it was dangerous to take it while on gcmaf?

anyway, No Poster Girl is a brave soul and we are lucky she is blogging about her cheney appts. i hope her gcmaf journey goes well!!!!

 

[Rrrr]

i forgot to mention another reaction i'm getting from gcmaf -- an increase in sex drive. i know sushi reported this as well. anyone else experiencing this or any changes in their hormones?

 

[Ronan]

i forgot to mention another reaction i'm getting from gcmaf -- an increase in sex drive. i know sushi reported this as well. anyone else experiencing this or any changes in their hormones?

I have less sex drive! Good thing imo as there's nothing worse for zapping all my energy

 

[lobba123]

too early to say since i just took one dose of gcmaf but definitely less interest in sex this week

in any case i think that we are all so different and even within same CFS patients there are so many different infections that general synthoms and reactions can vary complitely from one person to the other

 

[hoop]

Hi Sushi,

I am taking LDN too and that has helped with sleep.

Aren't you afraid that GCmaf and LDN could conflict, that they eachother oppose?
During my 2 first injections of GcMaf I was also taking LDN, but since I was extremely tired which you can be from Gcmaf or LDN in the beginning, I stopped LDN, to give GcMaf priority, also because I asked KDM about LDN and he was against it. Now that I have had 18 injections of GcMaf and I become less tired of it, not yet better, I would like to give LDN a try again, if I could be sure they not oppose eachother. I am a moderate to low responder. I need sleep medication. Did you receive somewhere a confirmation that they can be used together. I searched the internet, but could not find it.

Best regards,
hoop

 

[Sushi]

Hi Sushi,



Aren't you afraid that GCmaf and LDN could conflict, that they eachother oppose?
During my 2 first injections of GcMaf I was also taking LDN, but since I was extremely tired which you can be from Gcmaf or LDN in the beginning, I stopped LDN, to give GcMaf priority, also because I asked KDM about LDN and he was against it. Now that I have had 18 injections of GcMaf and I become less tired of it, not yet better, I would like to give LDN a try again, if I could be sure they not oppose eachother. I am a moderate to low responder. I need sleep medication. Did you receive somewhere a confirmation that they can be used together. I searched the internet, but could not find it.

Best regards,
hoop

Hi Hoop,

Looks like we are both KDM patients but you must have seen him a few weeks before I did. (I have taken 15 injections) Another patient and I saw KDM together and had both been taking LDN for a year and a half with good results.

We asked him about whether it might conflict with GcMAF. He said that the question about LDN was that no one really entirely knows how it works. But, he told us to continue taking it.

On our second visit (after 12 injections) we were both showing positive responses to GcMAF and again asked about LDN and whether we should continue with it, try lowering the dose from 4.5mg, etc. He said to continue with LDN and if we wanted to experiment with lowering the dose, to do so only after we had reached the number of weeks on GcMAF that predicted a good response level according to our VDR tests.

I am a low-low responder, so for me that will still be many weeks away. The other patient is a good responder and thus may try lowering the LDN sooner. I'd guess (as KDM says) no one knows for sure about LDN, but we are responding to GcMAF and he told us to continue with LDN.

Hope this helps!
Sushi

 

[Rrrr]

a note about sleeping. i have shifted from taking my shots (daily b12 shot and daily nexavir shot) from the late morning to the late afternoon (5 pm?). i am now sleeping better. other things i take for sleep are:

- melatonin
- chamomile
- nettle
- theanine
- magnesium citrate

(sorry about hte poor spelling.)

this seems to be working. at first the gcmaf made my sleep worse, and so did the nexavir. but now i'm doing okay. even sleeping well! how strange...!

this may change by tomorrow, of course!

also, i HAVE To go to sleep earlier (10-11 pm?) and i wake up earlier now too. this is also new to me.

rrrr

 

[girlinthesnow]

Thanks for posting this sleep info Rrrr, I'll give this a try. My sleep has been deteriorating over the past week or so since restarting GcMAF/Nexavir. I take chamomile, nettle (sometimes) and magnesium for sleep too. Thanks !

 

[lobba123]

got the first full dose of gcmaf and i feel very very good, powerful and very very relaxed.no headaches or instamine effects

i am afraid my experience is of little help for you because the effects look complitely different from CFS patients

 

[hoop]

Hi Sushi,

thanks for your answer. But why do you want to lower your dosis of LDN
when you feel fine with it. I thought that 4.5 was a good maximum dosis?
Did KDM suggest to lower LDN and for what reason?
Thanks very much,
Hoop

 

[froufox]

Hi all

I just wanted to ask if anyone else has experienced nausea since they started on GcMAF? Ive been getting it quite a lot since I started the treatment in January...not every day but I do go through episodes where I'll get it a few days in a row and on some days it occurs several times a day. Its really uncomfortable at times. Also I started Nexavir a few days ago, and the nausea seems to have come back quite strongly today....i almost vomited this morning it was so bad! Its mostly settled down now but still slightly there in the background. Just wondered if anyone else has had this? I'm wondering if its related to die-off.

Also vli, sorry to hear that you have been struggling with depression too...i know how debilitating it can be. Hope things get easier for u.

 

[aquariusgirl]

Interesting (sorry...). You'd kind of expect people to get die-off if they were killing viruses and bacteria...but not too many ppl have mentioned this.

hope you have got lots of binders, chelators, mopping up agents... takes the edge off the misery.

 

[Sushi]

Hi Sushi,

thanks for your answer. But why do you want to lower your dosis of LDN
when you feel fine with it. I thought that 4.5 was a good maximum dosis?
Did KDM suggest to lower LDN and for what reason?
Thanks very much,
Hoop

Hi Hoop,

No, KDM didn't suggest lowering it--we asked about lowering it in order to see if we felt any difference in the response to GcMAF on a lower dose of LDN.

Best,
Sushi

 

[froufox]

Thanks for your input aquariusgirl, yeah I assume it is die-off, or something related to that eg secondary porphyria, as I know nausea is a classic symptom of that. I took some cholestyramine (Questran Lite) today and I think it might have helped slightly but I dont like taking that too often as it contains aspartame. The other one contains sugar which isnt good either!

I also take a charcoal/bentonite formula too sometimes, which does help sometimes helps but other times not.

Its perhaps because I took a 3rd of a dose last time, which was obviously too strong for me. I think it will help if i just continue to stick to very low doses.

Cheers

 

[Rrrr]

hi frou,

i know one person on gcmaf who has vomited a whole number of times since starting gcmaf.

i take cholestyraimine daily. i take the one with sugar, but i'm eating sugar lately...

sorry you are dealing with nausea.

and i'm so sorry vli -- and others -- are dealing with depression.

i'm taking this week off from gcmaf. last dose hit me harder and also i'm out of town, and need my strength and can't afford to feel sicker this week.

rrrr