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

[Forebearance]

Ronan, here's another perspective on the colds issue.

It might be that what feel like colds are your body kicking out various microbes that it has acquired over the years. As your immune system gets stronger, it might decide to kick the buggers out.

Especially if your colds are happening without an obvious source. Like say, you don't remember sitting next to someone with a cold. You don't know where you could have gotten it.

When I first began taking Virastop I got a "cold" which was actually my body getting rid of something. I hadn't even been out of the house so it seemed odd that I could have picked up a cold. I don't know if something similar is happening to you, but I thought I'd mention it.

 

[garcia]

I was pointing out the fact that getting a cold espcially with fever consecutively to GcMAF treatment could be a sign of immune restoration.

This is what happened to me. I don't normally get colds per se. What happens when I "catch a cold" is that I get very very tired and lacking in all energy (even more so than usual). Since being on GcMAF I caught a cold/flu from my family and had a full-blown flu reaction with a temperature. This is the first one I can remember getting in years.

If the immune system is too biased towards a TH2 immune response then it will be unable to mount a cold/flu immune reaction, and you won't get any classic cold/flu symptoms.

I believe the flu I got was a good sign as it hopefully shows the gcmaf is shifting my immune response back to TH1.

 

[garcia]

where does anyone outside the US order their VSL from? The company website says it would ship to US customers only.

I ordered mine from here:
http://www.dennisthechemist.com/

 

[garcia]

I started LDN 2 months ago and since then I haven't gotten a single cold. Coincidentally, sergio and sushi are both on LDN and they seem to be experiencing less of the adverse effects of gcmaf while still experiencing the same, if not more, benefits.

I agree LDN is a potent immunomodulator so there is a good chance it is helping to alleviate many of the symptoms of GcMAF-therapy.

Having said that, I know that Sergio and Sushi had both made a lot of gains before starting GcMAF, so explains why they are getting less adverse effects.

Some people can't tolerate LDN. I suspect their immune systems are in worse condition than those who can, so the fact that someone can tolerate LDN might be a good sign in and of itself.

 

[Overstressed]

Hi,

as you all know I'm quite a while already on Gc-Maf(46 injections) and recently I added selenium and that is doing fantastic things to me. I don't know if Gc-Maf makes the difference, because I took selenium before I was on Gc-Maf and I had the feeling it increased(=worsening) my symptoms.

The reason I started selenium is because it seems beneficial for the thyroid.

Take care,
OS.

 

[heapsreal]

This is what happened to me. I don't normally get colds per se. What happens when I "catch a cold" is that I get very very tired and lacking in all energy (even more so than usual). Since being on GcMAF I caught a cold/flu from my family and had a full-blown flu reaction with a temperature. This is the first one I can remember getting in years.

If the immune system is too biased towards a TH2 immune response then it will be unable to mount a cold/flu immune reaction, and you won't get any classic cold/flu symptoms.

I believe the flu I got was a good sign as it hopefully shows the gcmaf is shifting my immune response back to TH1.

i think we dont get colds because our immune systems are down, poor nk function etc, but when vral ,loads come down like with av's etc the immune system kicks into gear and this i think is whats referred to IRIS/immune reconstitution inflammatory syndrome. I know since being on antivirals i have been getting colds and flu's so i think my immune system is starting to work, alot of viral symptoms are from cytokines that our immune system produces to fight infections etc.

 

[Sushi]

I agree LDN is a potent immunomodulator so there is a good chance it is helping to alleviate many of the symptoms of GcMAF-therapy.

Having said that, I know that Sergio and Sushi had both made a lot of gains before starting GcMAF, so explains why they are getting less adverse effects.

Some people can't tolerate LDN. I suspect their immune systems are in worse condition than those who can, so the fact that someone can tolerate LDN might be a good sign in and of itself.

I don't think we have really been able to figure out here why some respond to LDN and some tolerate it. I wish we knew more.

In my recent visit with KDM and from the immune system tests he did, he said that I had extreme immune activation, a positive neurotoxin test which indicates a shift towards Th2, and would also indicate higher gut permeability. I also had gut infections.

Of course these tests were done before I started GcMAF. My cytokine profile had only IL8 elevated, and it was only 40. I'd guess the fact that my inflammatory cytokines were lower than usual for ME/CFS patients who are XMRV+, is probably due to LDN and that these lower levels may well help me to tolerate GcMAF.

With my "extreme immune activation" I was also unable to "get" a cold or the flu or mount a fever. After 16 injections, I have once had a fever and a fluish episode.

Yes, I had made some gains before starting GcMAF--mainly from methylation therapy, detoxing heavy metals, and LDN. I worked with methylation before starting LDN and whether or not that made it easier to take LDN, I don't know.

Let's keep this discussion going as we are raising some important questions. I look forward to the conference on the 20th and hope we will get some more or less "live" reports from London that might help us in our discussion.

Sushi

 

[Rrrr]

Hi,

as you all know I'm quite a while already on Gc-Maf(46 injections) and recently I added selenium and that is doing fantastic things to me. I don't know if Gc-Maf makes the difference, because I took selenium before I was on Gc-Maf and I had the feeling it increased(=worsening) my symptoms.

The reason I started selenium is because it seems beneficial for the thyroid.

Take care,
OS.

great to hear from you, overstressed. and great to hear yr good news.

i have tried selenium before and it never did anything. but what i have found is that things i have tried in the past can sometimes help later on (years later). and things that hurt me in the past can sometimes not hurt me later on. and things that helped in the past CAN sometimes hurt me later on. it seems my body is ever-changing its reactions to things. and i never know why.

but i do think that of all the things i have tried, i'm most hopeful about gcmaf. and hopeful that it will allow me to take some things that i could not take in the past, as i became hyper sensitive to them (methylation supplements).

i'm only on my 4th shot of gcmaf. i missed my shot this wk. i'm going to increase the dose for my next shot. and i'll do that subcutaneously. then i'll keep that increased amount and do my next one after that via an IV push shot.

 

[freda]

gc maf the real deal

We have had a very bad experience with GcMAF so we wish to share this with you as we are aware that you are using GCMAF and some poeple are not responding as well as anticipated. The blood results for HIV after 16 weeks showed little change therfore we were non responders. Our vitamin D levels were so high they were toxic and dangerous. The vials we were using were labelled GHP which according to the web site was a Vitamin D preparation, and it seems that is exactly what it is. There really is no substitute for independent testing.

 

[lobba123]

i am at the third dose and no bad effects to report

i resolved extreme irritation problems and they are complitely gone (they were probably a side effrect of the antiviral i take for hbv), also sleeping is very regular now (in the past i needed melatonin to sleep).i feel very good, just a little more tired at dinner time

in 2 weeks i will have full blood check up and scans, vdr test soon and hopefully frequent nagalase tests since i got it very high

i am reporting my experience but it is obviously different to CFS patients since i have cronic hbv infection and liver nodules

 

[lobba123]

by the way i am still taking vitamin d, sun and sun bed because i never had normal vitamin d dispite all of this taking...it just reached 43ng/ml (optimum levels 50-60ng/ml)
i make vitamin d, calcium and all other recomended tests every 4 weeks so i dont have any risk of vit D excess

the only danger of vitamin D at levels 200-500ng/ml or higher is a calcium rise that rarely happens even at these levels.there are very few clinical case reports on vitamin D toxicity

 

[Sushi]

We have had a very bad experience with GcMAF so we wish to share this with you as we are aware that you are using GCMAF and some poeple are not responding as well as anticipated. The blood results for HIV after 16 weeks showed little change therfore we were non responders. Our vitamin D levels were so high they were toxic and dangerous. The vials we were using were labelled GHP which according to the web site was a Vitamin D preparation, and it seems that is exactly what it is. There really is no substitute for independent testing.

Hi Freda I am sorry to hear about your experience. I see on the BGLI site that they list two products--GHP and GcMAF. I was not able to see the difference from their site but I wonder if you have been taking GcMAF itself or something slightly different related to Vit D which is called GHP?

The vials I have (not from BGLI) are clearly labeled GcMAF and my blood tests have shown no rise in Vit D, but rather my Vit D 25 (which was too high before taking GcMAF) has now gone down to the normal range and my Vit D 1,25 (which was too low before taking GcMAF has risen to the normal range.

I wonder what dose you have been taking? The vials I have are 100 ng each and I am taking half, by injection, once a week.

Also, at least for ME/CFS patients, 16 weeks is not enough to show much result--especially if you are a low responder. My doctor told us not to expect many changes (even if you were a high responder) before about 20 weeks. I am a low responder genetically, but I am already noticing positive changes after 16 injections. Have you had the genetic tests done to show your level of response?

There are a number of sources for GcMAF and I don't know if they are all equally pure and equally potent. That said, independent testing is a good idea. It is possible--but uncommon--to get a spike in Vit 1,25 and that is why regular testing is advised. However, the main mechanism for GcMAF is through increasing macrophage numbers and activity.

If you would like to tell us more about your experience--such as the source of your product, the amount you were taking, the method you were using to take it and your actual Vit D test numbers--it would be very helpful and appreciated. We all want to be cautious.

Sushi

Again, sorry you have had this experience.

Sushi

 

[Rrrr]

freda,

i'm so sorry this happened to you. how often were you testing for vit d levels while you were on the substance for 16 weeks?

also, i have not heard of this GHP. is that the same as GcMAF?

lastly, can you tell us where you got this substance?

i do wish you the best of luck recovering from this experience. horrible.

rrrr

 

[Rrrr]

hi all,

i skipped my dose last week, due to travel, and did a dose this week, which was my 5th. i increased the amount by a tiny bit more than my usual 0.02 cc.

(my last shot before this one resulted in 2 days of feeling sicker/weaker.)

so far, all have been IV push/shot except one, which was a self administered subcutaneous shot.

i had the shot at 11 am and around 3 pm my legs got so weak i have had trouble walking. i had this happen before when i was on glutathione shots. we'll see how i do by tomorrow.

also, starting last week, the week i skipped my weekly shot, i began to have trouble sleeping. i would wake up at 3:45 am or so and not be able to go back to sleep. this has gone on for 5 of the last 6 nights.

sigh.... sleeplessness sucks.

oh well. will keep you all posted.

has anyone else felt this same type of jelly-legs? too weak to walk?

 

[Sushi]

has anyone else felt this same type of jelly-legs? too weak to walk?

My legs hurt quite a lot for about one day a week--then it is fine the next day. Not exactly "jelly" but I don't trust them when they feel like that.

Sushi

 

[froufox]

Sorry you've not been feeling too good recently Rrrr. I just wanted to say that for me jelly legs (for me i wud describe that as my legs feeling "hollow" and just about to collapse beneath me if i just try to do a little bit more walking etc)...means my adrenals are really struggling due to low cortisol. Do u know what your cortisol levels are?

I get that symptom intermittently anyway, before I started GcMAF but certainly since I started on GcMAF my adrenal fatigue got a lot worse...for the first few weeks it was awful (on the higher dose), then as I decreased my dose, it got slightly better. Actually any treatment Ive tried has had exactly the same effect....made my adrenals weaker.

As for me, Ive been on the Nexavir for about 10 days (mostly every other day), and i think it made me feel very weird in the head for the first few days, like very spaced out, but a different kind of "weird/spaciness" to the usual weirdness lol....hard to describe really! Not sure what that was...either die off or something else, or just coincidental. Anyway since then ive also noticed some moments where my brain inflammation definitely feels a little better and my thinking is clearer...so i feel like it might be doing a little bit of good at times.

I'm just doing 1mls every other day at the mo to save on cost, tho at first i did 2mls every day.

Done 16 shots so far of GcMAF, but taking a break this week....depression is definitely better since dropping to 1/6th of a dose.

 

[Rrrr]

Sorry you've not been feeling too good recently Rrrr. I just wanted to say that for me jelly legs (for me i wud describe that as my legs feeling "hollow" and just about to collapse beneath me if i just try to do a little bit more walking etc)...means my adrenals are really struggling due to low cortisol. Do u know what your cortisol levels are?

I get that symptom intermittently anyway, before I started GcMAF but certainly since I started on GcMAF my adrenal fatigue got a lot worse...for the first few weeks it was awful (on the higher dose), then as I decreased my dose, it got slightly better. Actually any treatment Ive tried has had exactly the same effect....made my adrenals weaker.

As for me, Ive been on the Nexavir for about 10 days (mostly every other day), and i think it made me feel very weird in the head for the first few days, like very spaced out, but a different kind of "weird/spaciness" to the usual weirdness lol....hard to describe really! Not sure what that was...either die off or something else, or just coincidental. Anyway since then ive also noticed some moments where my brain inflammation definitely feels a little better and my thinking is clearer...so i feel like it might be doing a little bit of good at times.

I'm just doing 1mls every other day at the mo to save on cost, tho at first i did 2mls every day.

Done 16 shots so far of GcMAF, but taking a break this week....depression is definitely better since dropping to 1/6th of a dose.

i do not know what my cortisol levels are. but in the past, when i got this jelly-legs (too weak to walk), it passed after i stopped the med that induced it. i hope it gets better in a day or two...?

what do you do for yr adrenals, frou?

also, kdm is saying that we need about 20 shots of gcmaf to see an impact, right? do you know if kdm says that the shots that are only 1/6th of a dose are still considered 1 shot? or do we need 20 FULL doses (100 ng) to to reach his "20 shots"?

glad to hear the depression is dropping!

 

[Dan_USAAZ]

We have had a very bad experience with GcMAF so we wish to share this with you as we are aware that you are using GCMAF and some poeple are not responding as well as anticipated. The blood results for HIV after 16 weeks showed little change therfore we were non responders. Our vitamin D levels were so high they were toxic and dangerous. The vials we were using were labelled GHP which according to the web site was a Vitamin D preparation, and it seems that is exactly what it is. There really is no substitute for independent testing.

Hi freda,
I am very sorry to hear that your treatment is not going as well as desired. This is a very interesting post, but you do not provide enough detail to make the information useful to us as patients.

As Sushi pointed out, the BGLI web site lists two products for sale, GcMAF and GHP. The web site does not give a description of GHP, so it is confusing. Because you have not specified the source/manufacturer of your GcMAF and because BGLI manufacturers/sells a product called GHP, I will assume that BGLI is the source of your product.

I contacted BGLI by email this morning to get clarification about GHP. I received a response a short time later. GHP is an acronym for Glyco Health Protein. This name (or GHP) represents the brand/product name for the GcMAF that is produced by BGLI. It should contain 100ng/ml or 0.265 cc/ml of GcMAF. I believe this is the standard being used by the four GcMAF manufacturers that I am aware of.

I have some questions that I hope you can respond to.

1) Please verify the source of your product labeled GHP. Otherwise, your post is almost meaningless. This will help us determine what the product is that you are using.

2) You indicate that the blood results for HIV after 16 weeks showed little change. Please indicate what blood tests were given to gauge the effectiveness of the medication and what the results were before and after administration of GHP.

3) Did you have a nagalase blood test before starting the GHP?

4) BGLI requires that you are working with a doctor to run regular blood tests to ensure your safety. Were you getting blood work done monthly?

5) Related to the previous question, the following are a subset of the blood tests are required monthly.

Vitamin D3 total
25-hydroxy vitamin D
1-25 dihydroxyvitamin D​

It sounds like you did not have these tests until week 16. Is that correct?

6) You stated that GHP which according to the web site was a Vitamin D preparation. Please provide the link that states this. Again, I am assuming that this is BGLI and I do not see this description of GHP on their web site. Please note that GcMAF is an acronym for Vitamin D Protein Derived Macrophage Activating Factor. I hope you are not confusing this with just being a Vitamin D preparation.
UPDATE: I found the BGLI web page that references "Vitamin D preparation". I copied the text below. I have emailed BGLI again to get more clarification, as the way this is written makes me think that the products may not be exactly the same.

In production:
Gc-MAF (vitamin D3-binding protein (Gc protein)-derived macrophage activating factor)
GHP - Vitamin D preparation

7) How did you store the GHP prior to injection?

8) Was the GHP frozen, thawed and refrozen several times?

9) What type of injection was used for the GHP?

10) What other medications/supplements were you taking at the same time as the GHP?
Other medications can hinder the effectiveness of GcMAF.

Sorry for hitting you up with so many questions, but I have a vested interest. BGLI is one of the companies that I am looking at for having my GcMAF prescribe through.

Also, by answering some of these questions, the experienced patients on this thread may be able to provide you with suggestions that could make your GcMAF treatment more effective. I believe Sushi has already provided some good input.

Thanks,
Dan

 

[vli]

I ordered mine from here:
http://www.dennisthechemist.com/

Hi Garcia,

Thanks so much; would you mind telling us whether you order the sachets or capsules, and did KDM specify which to get? (Also, this is so expensive!!! Does everyone who take it feel something from it??)

 

[froufox]

i do not know what my cortisol levels are. but in the past, when i got this jelly-legs (too weak to walk), it passed after i stopped the med that induced it. i hope it gets better in a day or two...?

----ok, I hope it gets better soon!

what do you do for yr adrenals, frou?

----i havent really found anything to be particularly effective for adrenals to be honest...i tried hydrocortisone in the past but for me it was too problematic to take, and adaptogens can sometimes be helpful but other times seem to stimulate me too much so seems to be hit and miss. Keeping carbs low, eating regularly with sufficient protein & fat helps, enough salt, b vits, avoiding stress, pacing etc, just regular stuff really all helps to some extent but its just "managing"...and sometimes i dont even manage to do that. KDM just says its a downstream effect so couldnt offer any advice for that. I guess its just a case of not pushing them too hard....something i should have learnt by now! I do wish KDM hadnt recommended taking the top dose at first though.

also, kdm is saying that we need about 20 shots of gcmaf to see an impact, right? do you know if kdm says that the shots that are only 1/6th of a dose are still considered 1 shot? or do we need 20 FULL doses (100 ng) to to reach his "20 shots"?

----no whatever our dose is, is counted as one shot, as he told me whatever dose u can tolerate is the correct dose for u...u dont get better quicker if u take a higher dose...he specifically said that, so thats good news. Yes looking forward to seeing if things get better after dose 20!

glad to hear the depression is dropping!

---thanks!