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

[Gazelle]

Benign positional vertigo

Just wanted to add that benign positional vertigo was a "classic" symptom of the mid-80's Tahoe epidemic. I've had it off and on during the course of different therapies, and my doctor thinks it's XMRV or HGRV-related activation.

 

[Sushi]

Hi Rrrr & Sushi, I just wanted to add that I've also had vertigo recently, alongside pretty severe brain inflammation (i tend to think that its part of the same thing, at least in my case). I think might have been exacerbated by adding in b12 drops. Even just turning my head created a whooshing sensation, and dizziness. I think in general its caused by inflammation...I remember having the exact same symptom from taking antibiotics a few yrs ago which caused major die-off/herxing and too much inflammation as a result. And this time too, I think ive just had too much die off going on.

I had a week break from the GcMAF and stopped the b12 drops (I'm still on Nexavir tho), and most of the severe inflammation has reduced now, thankfully.

Thanks Frou and others,

So now we have yet another mystery symptom whose origin we are not sure of. You mention that you got it from die-off from antibiotics and are now suspecting both die-off and inflammation.

Here is my "historical" part of the mystery: the only other time I had it was when I was doing an intense few weeks of therapy with ozone and IV hydrogen peroxide. I was at a clinic and they said they occasionally saw that with this kind of therapy. I think it was die-off cause I don't think I have much inflammation (unless I am not recognizing it, though I don't have the usual symptoms). It went away when I got through that therapy.

Ozone & IV hydrogen peroxide are likely to cause a lot of die-off from oxygen sensitive critters. This could also apply to the HBOT, I'd think. So it would be something to watch if and when you try more of this.

I started getting it after adding Nexavir and hydrox B12 shots daily. With the other things I'm doing I could well be stimulating methylation which would lead to die-off/detox.

I did take a one day break from Nexavir and B12 and noticed that it lessened a bit.

Consado: after I did that intense oxygen work, I did get a lot better for a couple of years. I think with oxygen we have to balance the factors of oxidative stress with the benefit of killing critters.

Amongst us all, we are churning up some good data! Yeah for the life of a guinea pig!

I'm just going to monitor the vertigo and see if I can relate it to anything specific and whether the levels change. At the moment it is quite tolerable. I just have to be aware that the room may spin if I go quickly from lying to sitting. I did a rather intense pilates class yesterday and had to "fudge it" a few times when we went from lying to sitting or standing. But I managed the class equally as well as the 4 other "healthy" members of the class and it was so nice not to have to plead "health problems." I was also able to be out for a few hours doing errands the same day--this is good.

Thanks for all your thoughts.

Consado, do you have any news of the Convention in Brussels today?

Best everyone,
Sushi

 

[Rrrr]

cansado:

so sorry the gcmaf did not help. why is it that after only 38 shots KDM wanted to stop your gcmaf trial? what if it just takes more time? how long were you on it for?

and why did kdm ask you to take an 8 wk break? i do not understand why a few people have said that kdm is suggesting breaks. are the breaks for people who are doing poorly (worse) on gcmaf? or are the breaks for everyone, after a certain number of months on gcmaf?

also, cansado, can you tell us more about cannibas oil? what is that used for? what is that supposed to address?

best,
rrrr

 

[Rrrr]

cansado's stopping gcmaf begs the question: how long should we be on gcmaf before deciding it does not work?

i think that with some anti-virals and anti-retrovirals it takes people a year or more before they start to feel better.

i am confused as to why cansado was told to go off gcmaf after only 38 shots. i thought kdm told ronan that he may take 40 shots. if that is the case, why can't it be that some people may need 50 shots.

i have been sick 20 years. maybe longer. so what if i need to be on gcmaf for 2 years before it can overcome the damages that xmrv has done to my body in two decades.

 

[vli]

I have the same questions as mentioned in the post above mine, so if anyone'd be so kind as to jump in...

 

[froufox]

Hi cansado,

I'm on Nexavir now (1mls a day instead of 2mls, due to cost), but I also do an occasional injection of Dr Enlander's Hepapressin when i can afford to buy some. Its difficult to compare the two completely because as u say Dr E recommends to take Hepapressin once a week, although I know that some people take it twice a week. Once a week doesnt seem enough tho, at least for me, as although I do get benefits from it, it is pretty much shortlived. I do feel tho that the Hepapressin gives me a different and stronger boost compared to the Nexavir, presumably because of the added ingredients in there...methyl B12, magnesium, glutathione & trace minerals. The Nexavir does seem to help lower my brain inflammation, but it does not give me an obvious boost in energy, like the Hepapressin does.

The Hepapressin dosage is 1mls (they are sent in 1mls needles), but I dont know the specific breakdown of all the ingredients, so I dont know exactly how much Hepapressin is in there, but it would be good to know that.

Thanks and u hang in there too!



Hi Sushi, thanks for your input, I totally agree with u, thats one thing that concerns me about doing too much oxygen based therapies.

Glad u had a good day yesterday and handled the pilates class well!

Re the vertigo/dizziness, i usually get it alongside other symptoms of brain inflammation like brain swelling, pressure in my head, squeezing sensations and other stuff so I know its not just ear related in my case. However, I did find this link which discusses how TNF-@ has been found to be elevated in ear/autoimmune ear illnesses like vertigo. Since macrophages boost TNF-@, I wonder if there is a link there, and if adding in all the other stuff like B12, is just exacerbating it all? Theres also a mention of NFkB, which is also highly inflammatory as it controls genes that are involved in inflammation...

http://www.dizziness-and-balance.com/disorders/autoimmune/aied.html

Quote: "Bystander damage: In this theory damage to the inner ear causes cytokines to be released which provoke, after a delay, additional immune reactions. This theory might explain the attack/remission cycle of disorders such as Meniere's disease. There is evidence for cytokines in the cochlea including interleukin-1A, TNF-alpha, NFkB P65 and P50, and IkBa (Adams, 2002)."

And then re NFkB here it mentions "Tumor necrosis factor (TNF) released by the macrophage activates the gene switch nuclear factor-kappa B" http://www.rmgh.net/wiki/index.php?title=Macrophages

More info on NFkB..
http://en.wikipedia.org/wiki/NF-κB#Activation

So I wonder if thats what is going on. I guess its ok if its manageable but not good if it gets out of control. Mine seems to get way out of control at times, maybe either because I have a high infection load and/or my body cant control the inflammation due to poor endocrine function (I wonder).



Good points & questions Rrrr, I wonder if how an individual responds plus their test results, up to a certain point, indicates whether they are responding in the "right" way or not? Maybe KDM makes a decision then? I really dont know either, just speculating. I guess its worth writing to the clinic to ask.

 

[cansado]

Sushi,
I have no news from the conference but I will connect you on facebook to some people who have spread a lot of information on the conference. Do you take B12 shots daily?

I was on the full dose for 38 weeks. Experienced very minor response and at the end of the 38 weeks my mild side effects which I experienced in the beginning returned. That is the reason for taking a break, and so KDM assured me that I had enough shots. He mentioned it a couple of times that I needed about 40.

When looking at the C4A, CD14, RNA cytokines it was clear that my immunesystem is still hyperactive and that the GcMaf basically has not done its' work. We will know more of the reason why once the result of the nagalase test is in.

When I hear of patients taking breaks it is mostly b/c they perform poorly on GcMaf.

There is no clear protocol yet on why patients react a certain way and how much they need. I am a moderate-low responder. Remember, GcMaf is a form of damage control..

Because the virus replicates so slowly it is normal that it takes a long time for the antivirals to kick in. But as for the GcMaf I can't tell how long you should be on it before considering to stop. Keep in touch with KDM. Have you had your VDR determined? Didn't he imply how many you need?

I have been sick since 1989..

As for cannabis oil it might reduce the problems in the gut and intestines. Also good for sleep, pain, depression and even cancer tumors (?). I have heard great stories about it but I am not sure if CFS patients have tried it. Of course we live in this crazy society were this substance is illegal but according to me it has great healing powers.

 

[cansado]

Yes Froufox I also have the idea that Nexavir reduces the brain inflamation. My feeling is hereby confirmed! But it can make me feel very tired also. I am going to cut back a little and have my NK cells tested in 6 months or so with Dr. Enlander...see what happens.
Big hugs

 

[lobba123]

i am starting to have effects from gcmaf too, mild flu like symptoms (mild muscles pains, dizziness, slow mind and movments) with no fever.the worst part is late wake up in the morining but after a couple of hours those symptoms get mild.feeling weak and tired all day

this is my 6th/7th week so all this should be consistent with immune activation, at the 6th week i had a rise of vitamind 25OH to 58ng/ml which i could never reach in the past and also calcium has increased to 10.1 (normal range until 10.6).today i have checked alt/ast and calcium just to be sure about these symptoms are not liver or calcium related

i am using bgli protocol that suggests shots every 5days, so it is 6th week but 8th shot

 

[serg1942]

Hola chic@s,

Good to see that the forum is back on!

I have been a few weeks without following the thread, so I must have missed a lot. If someone out there also thinks that we need a subforum about GcMAF, please tell Cort or the moderators, because no one pays attention to me in this regard, and this subject already deserves a forum...

CANSADO, I am so sorry GcMAF did not work on you... I was expecting you to have a slower reaction, and a delay in the improvement of your symptoms, but hoping the markers of your immune system, etc. were getting better... and now what? Has KDM a plan B, C or D????

Today I have to be given my 21th shot. I am clearly better than before. I am posting below a message I wrote on FB about my progress. However, I'd like to be better than I am. Hopefully the injections I have left to be administered "make the trick!"...

As I explain below, I think both Nexavir and B12 shots makes me feel worse and to some degree must be masking my real health state, as makes no sense that I feel worse than 6 weeks ago when I started the injections all at once (together with GSH that can also be working together with B12 to produce a more efficient detox), and when I was getting better every week...

This is why I have decided to cut to half the dose of B12 and inject 5mgs every other day, instead of everyday... Will see how it goes.

BTW, I am seeing KDM on July 19th, but, because I am accompanying a friend of mine to her first visit with the Professor, we'll be in Brussels, at Campanile Violvoorde hotel, from Sunday night (17th) until Wednesday (20th).

If anyone is in Brussels at these days (or the ones who live there feel like it!), please let me know and let's see if we could meet there.
Un abrazo,

Sergio

***********************************************

My progress on GcMAF, June 10th 2011

I have not written recently about my progress on GcMAF, only because I wanted to have more solid and stable things to say, although the improvement is clear. Also, I started the rest of the treatment a month ago (Nexavir, IV B12, ABX,etc.), and I am feeling worse from this part of the treatment, that in the beginning can be pretty strong for the body.

I have had 20 shots of GcMAF so far (people usually takes about 40 top, so I still have a great margin of improvement I hope).

The main improvements are: much better digestion; more good days and less bad days; The good days are much better while the bad days are clearly less bad; From time to time I have days where I feel incredibly well, better than Ive felt in the last 7 years of disease (even at my 80%...); Although sleep is still a big issue for me, when I nap, I only need 1 hour or so, and I feel refreshed afterwards (this is new!); Mornings are better than usually; I suffer from mild vitiligo that is remitting; brain fog in general is better as well; Finally, I could say that I have more energy, but what is more noticeable is that I have definitely more endurance, i.e, less PEM

As Ive explained above, after adding on the rest of the treatment, I got worse and I stopped feeling the improvements I experienced after the first 3 months just on GcMAF (although my bad days weren't as bad as before). I think the initial response of my body to, especially daily injected Nexavir and Hydroxo-B12, masked and is still masking the net improvement I had and have reached. However, it seems that my body is getting used to the whole therapy, and I am starting to feel the benefits again, so I am very hopeful. Time will tell though!

I am seeing again Prof. De Meirleir on July 19th.

Best!

 

[vli]

Hi everyone,

I just noticed a new symptom that I'm having, though I'm not sure it's due to gcmaf since I'm writing this just before administering my weekly shot. I'm having weakness in the legs (feel wobbly walking about) and also lightheadedness. I suppose the lightheadedness isn't new to me as I have this at various points over the years but I was wondering if anyone else felt weak walking/standing up like I do as well (on top of any usual OI). Just thought I should report.

 

[Spring]

Hi Vli,

I have wobbly legs some days of the week, but only the first hour in the morning when I get out of bed. Those days sometimes the room spins around when I sit up in bed and then I have to wait 2 minutes before standing. Those days my head also feels light when I turn myself in bed.

Best regards,
Spring

 

[Sushi]

Hi Vli,

I have wobbly legs some days of the week, but only the first hour in the morning when I get out of bed. Those days sometimes the room spins around when I sit up in bed and then I have to wait 2 minutes before standing. Those days my head also feels light when I turn myself in bed.

Best regards,
Spring

Hi Spring,

Hmm--room spinning! Same happens to me when I stand up from lying or lie from standing or sitting. I've been thinking it is a detox symptom from Nexavir and B12? Are you taking those? I only started getting it after starting Nexavir and B12. I may be wrong though and maybe it is from GcMAF. I took GcMAF alone for about 4 months and didn't get the vertigo then.

Anyone else have thoughts about vertigo and this protocol?

Best wishes,
Sushi

 

[Gazelle]

apheresis

Sergio, back in December you had discussed the use of apheresis with white blood cells from a young, healthy donor matched for blood and mismatched for HLA-type to bypass a less sensitive VDR genotype and enhance GcMAF's effectiveness. Have you pursued this further or discussed it with KDM? Thank you.

 

[Spring]

Hi Sushi,

I also take Nexavir and B12 injections. But I have used them for 3 months without the spinning. The spinning started two weeks after starting Gc Maf, together with the wobbly legs, so I'm sure with me it's the Gc Maf. Or maybe it's the combination? I've heard others about the wobbly legs with Gc Maf but I don't know if they use Nexavir and B12 too.

Spring

 

[lobba123]

according to your trial with KDM and your experiences is there a correlation between response to gcmaf and vitamin d 25OH increase to high levels (i mean 60-100ng/ml)?

how many weeks did it take for you?

thanks

 

[cansado]

Hola!
No plan whatsoever Sergio!
I am very hopeful for you when reading your posts!
All the best,
C.

Hola chic@s,

Good to see that the forum is back on!

I have been a few weeks without following the thread, so I must have missed a lot. If someone out there also thinks that we need a subforum about GcMAF, please tell Cort or the moderators, because no one pays attention to me in this regard, and this subject already deserves a forum...

CANSADO, I am so sorry GcMAF did not work on you... I was expecting you to have a slower reaction, and a delay in the improvement of your symptoms, but hoping the markers of your immune system, etc. were getting better... and now what? Has KDM a plan B, C or D????

Today I have to be given my 21th shot. I am clearly better than before. I am posting below a message I wrote on FB about my progress. However, I'd like to be better than I am. Hopefully the injections I have left to be administered "make the trick!"...

As I explain below, I think both Nexavir and B12 shots makes me feel worse and to some degree must be masking my real health state, as makes no sense that I feel worse than 6 weeks ago when I started the injections all at once (together with GSH that can also be working together with B12 to produce a more efficient detox), and when I was getting better every week...

This is why I have decided to cut to half the dose of B12 and inject 5mgs every other day, instead of everyday... Will see how it goes.

BTW, I am seeing KDM on July 19th, but, because I am accompanying a friend of mine to her first visit with the Professor, we'll be in Brussels, at Campanile Violvoorde hotel, from Sunday night (17th) until Wednesday (20th).

If anyone is in Brussels at these days (or the ones who live there feel like it!), please let me know and let's see if we could meet there.
Un abrazo,

Sergio

***********************************************

 

[aquariusgirl]

I will be in brussels at the same time. Would also like to hook up with other KDM patients.

 

[Sushi]

according to your trial with KDM and your experiences is there a correlation between response to gcmaf and vitamin d 25OH increase to high levels (i mean 60-100ng/ml)?

how many weeks did it take for you?

thanks

Hi Lobba,

My Vit D 1.25 went down from 52 to 37 and my Vit D 25 went up from 34 to 48 in approximately a month on GcMAF. I do correlate that to GcMAF "doing something" as it was the only thing I did differently in that period.

Best,
Sushi

 

[Overstressed]

Hi Lobba,

My Vit D 1.25 went down from 52 to 37 and my Vit D 25 went up from 34 to 48 in approximately a month on GcMAF. I do correlate that to GcMAF "doing something" as it was the only thing I did differently in that period.

Best,
Sushi

Hi Sushi,

what are the reference values with your Vit. D tests ? Because, it looks to me that you were already on the safe side, before even starting Gc-Maf. I think LDN is helping you a lot too... My vit. D level was tested while I was already a long time on Gc-Maf and it was still 'low', i.e. 27. It's normal according to the ref. values, but they say that values above 30 are considered 'normal'.

Take care,
OS.