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

[Lou]

MoJoey,

Your points are well taken. It just seems to me the VDR testing is terriblly muddled at this point and very sick people are delaying or declining a promising treatment because of the uncertainty.

Of course, what you say about the possible downstream effects is something all who choose to try gcmaf should consider seriously. But life itself is a risk, and some would rather take one than wait to pin down something that in some ways has become similar to herding cats.

I hope this doesn't sound disrepectful. Your insights are always truly helpful.

After thought: Do you take anti histamines as part of the gcmaf protocol? Do you think it's ok to try the treatment without these anti histamines? Thanks!

 

[mojoey]

Joey, have you experienced any improvements with GcMAF?

none but the disclaimer is I didn't use either the version KDM is using now or BGLI

 

[mojoey]

None taken. Btw I didn't mean downstream effects in terms of damange from gcmaf, but rather in terms of intolerance. Still a risk, but I don't think in the sense that you were referring to? Gcmaf itself is very safe compared to drugs, i think even when there is an intolerance it won't cause long-term damage.

Once again, the histamine issue theoretically is tied to the VDR, but then again one high responder I've spoken to had that elevated c4a whilest on it, and is now having really terrible insomnia, so I don't think it's the only factor. I would start off without it and start the gcmaf at a very low dose either way, and then as you titrate up listen to your body. That's how I did it anyway.

MoJoey,

Your points are well taken. It just seems to me the VDR testing is terriblly muddled at this point and very sick people are delaying or declining a promising treatment because of the uncertainty.

Of course, what you say about the possible downstream effects is something all who choose to try gcmaf should consider seriously. But life itself is a risk, and some would rather take one than wait to pin down something that in some ways has become similar to herding cats.

I hope this doesn't sound disrepectful. Your insights are always truly helpful.

After thought: Do you take anti histamines as part of the gcmaf protocol? Do you think it's ok to try the treatment without these anti histamines? Thanks!

 

[Sushi]

MoJoey,

Your points are well taken. It just seems to me the VDR testing is terriblly muddled at this point and very sick people are delaying or declining a promising treatment because of the uncertainty.

After thought: Do you take anti histamines as part of the gcmaf protocol? Do you think it's ok to try the treatment without these anti histamines? Thanks!

Hi Lou,

From what I have heard from other patients, anyone who has gone to the trouble (if you are in the US it is a fair amount of trouble!) to get the VDR test, is going ahead with GcMAF--no matter what their VDR results. I know I am even though, according to Redlabs, I am a low responder.

I think those of us reading here are aware of the questions around this test and won't be put off from giving GcMAF a good run.

As to the question of anti-histamines, you could try PMing some of KDM's patients directly and asking if they are taking them. Or you could look on the Dutch forum where many of them post--google chrome will translate it automatically. http://www.mecvs.net/Forum.html . Look under Biomedical treatments. I haven't seen anyone post about taking an anti-histamine but KDM does give GcMAF with daily Nexavir injections and I don't know what the synergy is there but I think Nexavir is thought to be both anti-viral and anti-inflammatory.

Let us know how it goes--and wish you the very best!

Sushi

 

[Ronan]

I'm on GcMAF with KDM and not taking any anti-histamines. I am on daily Nexavir shots though, i know its an anti viral but its possible its an anti-inflammatory as well?

Been on it 5 weeks now but got a cold in week 2 so still early days. I have noticed having more energy in the last 2 weeks but really its too early to put this down to the effects of GcMAF. My energy and symptoms are always changing from day to day and week to week so its not unusual to have this energy but i had been going through a good 2 months worth of a bad spell after a few colds and usually after another cold it would take me ages to get back to this energy level but with the GcMAF i seemed to pick up a lot faster. Still looking pale in the face and fuzzy head so i'll see if that starts to improve over the next couple of months. I'm also on the Nexavir and B12 shots so it could also be down to that but i think this is different as i've had both before. Still way to early to tell really but i thought i would post my thoughts on it so far. I am seeing KDM next week again so will ask him for a copy of my VDR results as i never saw them. He did say however that i was not a good responder.

 

[*GG*]

Not sure if this posted in this thread somewhere, but where can I find good info on this drug? I want to gather info and see why/if my doc thinks this would be a good thing for me.

Thanks in advance!

GG

 

[Sushi]

Not sure if this posted in this thread somewhere, but where can I find good info on this drug? I want to gather info and see why/if my doc thinks this would be a good thing for me.
Thanks in advance!
GG

Hi GG,

It isn't really a drug but "Serum Gc protein (known as vitamin D3-binding protein) is the precursor for the principal macrophage activating factor (MAF)."

Here is a link to a primary research article:

http://www.ncbi.nlm.nih.gov/pubmed/...nel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

Sushi

 

[Alexia]

Hi GG,

I don't know if it's the same list that Sushi gave you but you can also find research articles here http://www.gcmaf.nl/index.php?option=com_content&view=category&layout=blog&id=6&Itemid=2

 

[CindyWillis]

[QUOTE=mojoey;
Also, based on what you said about CindyWillis not testing as a high responder: although that is true, I would advise patients to see if they have the same signs as she has. She recovered in a really short amount of time so many of the downstream effects might yet be there. Also, at her worst she was sleeping 19 hours a day. I never had to sleep that long even when I was at my sickest; even if I wanted to I couldn't. Instead, I was sleeping less and wanting to sleep more, and unable to even work part-time from a computer due to cognitive issues and stress-induction issues, which Cindy was also able to do at her sickest. ALso, she said she is able to tolerate 300+ supplements a week. Even though they're homeopathic, most CFS patients cannot tolerate that just because of the alcohol content so she seems to have a leg up on her liver enzyme function even if they're genetically identical to a lot of CFS patients.

FYI-just wanted to clarify that the vast majority of my medicines are coming from Cheney's protocol and not Dr. Sharp's. Therefore, it seems like if there were a problem with the liver handling it that other Cheney patients would have the same problem. My understanding is that Cheney's patients follow the same protocol that i am following so I just wanted to make it clear that other patients are taking the same amount and tolerating it fine with their liver. FYI-Also, it was Cheney's protcol that uses magnesium and taurine and a larger amount of it when overdoing it to prevent PEM. Just wanted to make sure everyone understood that this program is Dr. Cheney's with a little from Dr. Sharp.

 

[mojoey]

Hey Cindy,

Again I really don't mean to be rude but I know for a fact that not a single Cheney patient is taking 300+ supplements a week, or at least not under his auspices. His protocol has covered a lot of supplements over the years, but at any one time it is usually a list of ~10 or less supplements, and I also know for a fact that many of his patients cannot take everything he prescribes, especially artesunate, due to liver issues.

 

[leela]

Cindy,

I think a key point here is that, from my understanding, you are not a patient of Dr. Cheneys, but have culled information from the internet regarding his various protocols. It sounds like you may have misinterpreted the information, and presumed that all patients are on the same protocol, which includes all supplements at all times.

Most patients, as Mojoey mentioned, rotate through a schedule of a handful of things specific to them at that time, and change it up as things progress. I have limited faith that any human body, healthy or otherwise, could tolerate well or benefit from the amount of substances that you report; each substance is giving its own metabolic, biochemical, and bioenergetic directives in concert with so many others that I wonder how effective they could be under such circumstances. It appears you are asking a lot of your body in that regard and in many others.

For a little perspective I thought I"d add that I only know one other person who takes such a huge load of supplements every day (I think it's 150?) but he does not have CFS. He has the desire to have his brain cryogenically frozen for the purpose of having his consciousness downloaded into a computer when that technology becomes available. (Google Ray Kurtzweil and The Singularity )

 

[Lou]

Hi Sushi,

Thanks for the kind words, and yes, I'll let you guys know how things go with the treatments.

 

[undcvr]

I take about 50-100 supplements a day everyday around the time I began to realise I had cfs. It was the only thing that kept me going, many people dont realise that. I wud take some of these at like 5-10 times the suggested dose too. I have always felt like a Black Hole, that my body wud just suck up every nutrient I gave it and still craved some more. I needed to much just to bring some semblance of relief. The ones that worked the best were those that were immune supportive. (CFS is such a stupid name for what we have !) It made me so broke but it kept me from falling sick which was what I felt like doing ALL THE TIME. I take so many of them I dont even take them in capsules anymore, I just buy them in bulk powder and mix it into a horrible tasting sludge and swallow it. Also I dont eat much, my meals are being replaced by supplements. I cant really tolerate food. I never understood that until I saw Cheney's Elimination diet. I have many food sensitivities, I have have intuitively known this and stopped eating.

From my point of view, in many ways, supplements are just very specific concentrated foods. If you truly have CFS and are not feeling well. Try Cheney's elimination diet to see if you are sensitive to any foods. Chance are that you will be sensitive to alot ! The only problem is that it is hard to tell, its a sensitivity not an allergy. It's all dosage and combination dependent and sometimes the sensitivity can be at the very edge of your discernibility that you think you are going crazy with phantom symptoms but you are not ! Bcos it will happen again.

Its a strange thing to notice but nvr before in the history of mankind has there been the doses of Vitamins that we take like we do now and this is because we have been able to isolate the chemical and sometimes discover the therapeutic benefit at such high doses. Eg Methylcobalamin - 5mg ! Vitamin C - 2-4gm ! I mean unheard of ! Even just one generation ago sometimes. We cud NVR eat that much of anything to reach those doses, except maybe herbs. - Just an observation -

 

[*GG*]

Thanks for the links Sushi and Alexia.

 

[Lou]

mojoey

Hi, just an afterthought: Remember you answered you'd gotten no improvements from gcmaf? But didn't you have trouble with vit d, and then could tolerate 15000iu along with gcmaf injection? Just wondered if that had occurred to you, that there may have been at least a slight postive from your treatment not noted.

 

[CindyWillis]

Hey Cindy,

Again I really don't mean to be rude but I know for a fact that not a single Cheney patient is taking 300+ supplements a week, or at least not under his auspices. His protocol has covered a lot of supplements over the years, but at any one time it is usually a list of ~10 or less supplements, and I also know for a fact that many of his patients cannot take everything he prescribes, especially artesunate, due to liver issues.

I am not sure where the disconnect is except that maybe when you went to Dr. Sharp you did not receive the Cheney gut protocol. I have it in front of me and have counted over 18 supplements etc. along with the usual protocol. The one I have is from the end of 2008 so that could be where the discrepancy is. I get the new one next week. Dr. Sharp is training with Dr. Cheney and has the new one. On the 2008 one, many of the supplements you take for 8 weeks and others you take longer. There were some I could not tolerate that I did not take more than a week and others that would interact with my other medicines that I did not take at all. I started in early or mid November(?) (can't remember when the medicines actually arrived) but I am still within my 8 weeks period. I ran out of certain ones in mid December and had a short while where I stopped taking them but reordered immediately since my gut started acting up again. Maybe you think I am saying that I am taking 350 different supplements which is not true. I am taking X supplements times X doses per week equal 350 per week. I did a quick count and 18 of my supplements/medicines are from Dr. Cheney. 7 are from Dr. Sharp for detox and different issues in my blood work. There were more initally from Dr. Sharp that went for a several months and then you stop them. After I stopped them, I added the Cheney gut protocol so I have not been taking the same supplements the whole time. However, the number of pills/liquids/supplements has remained above 350 for the whole time. Mostly detox. I have another 4 from another doctor. Maybe few can tolerate this amount. Everyone should work with their doctor to take what makes them well. However, I find it odd that Dr. Cheney would have a protocol that almost no one could tolerate. It would seem that there have to be more people like me out there. But maybe my husband and I are alone in what we can tolerate. I will ask Dr. Sharp if others can tolerate what he had me take. I will see what the new protocol has this week.

 

[vli]

Sorry to just jump in the convo like this, but I can't seem to find another more appropriate thread to post this.

I just had my VDR and XMRV culture test results emailed to me by Redlabs and I am freaking out particularly about the XMRV one. It says that by both XMRV culture env and culture gag (whatever that means), I am negative. I have now been tested negative for XMRV by both VIP Dx with the serology test and by Redlabs by culture. I don't know what to do. Does this prove I don't have the XMRV virus? If not then why does KDM require a positive XMRV diagnosis before he would treat a patient? I have an appointment with him on 24/1!

Also I seem to be getting the same VDR results as everyone--for the FOK I am low responder and for the BSM I am low to moderate responder. Like everyone I hope that they've somehow made a mistake too. I wouldbe so, so grateful for any advice anyone can give me on what I've received.

 

[Ronan]

A lot of people are testing negative by serology and KDM's lad are not picking up as many xmrv positives as VIPdx so its possible you have just been unlucky with the tests. A lot still to learn about all this so i wouldnt come to any conclusions just yet

 

[undcvr]

Sorry to just jump in the convo like this, but I can't seem to find another more appropriate thread to post this.

I just had my VDR and XMRV culture test results emailed to me by Redlabs and I am freaking out particularly about the XMRV one. It says that by both XMRV culture env and culture gag (whatever that means), I am negative. I have now been tested negative for XMRV by both VIP Dx with the serology test and by Redlabs by culture. I don't know what to do. Does this prove I don't have the XMRV virus? If not then why does KDM require a positive XMRV diagnosis before he would treat a patient? I have an appointment with him on 24/1!

Also I seem to be getting the same VDR results as everyone--for the FOK I am low responder and for the BSM I am low to moderate responder. Like everyone I hope that they've somehow made a mistake too. I wouldbe so, so grateful for any advice anyone can give me on what I've received.

Vli - try testing for Human Enteric Retrovirus and Human Gamma Retrovirus too.

 

[Sushi]

I just had my VDR and XMRV culture test results emailed to me by Redlabs and I am freaking out particularly about the XMRV one. It says that by both XMRV culture env and culture gag (whatever that means), I am negative. I have now been tested negative for XMRV by both VIP Dx with the serology test and by Redlabs by culture. I don't know what to do. Does this prove I don't have the XMRV virus? If not then why does KDM require a positive XMRV diagnosis before he would treat a patient? I have an appointment with him on 24/1!

Hi Vli,

Maybe you will be one of those he does a stomach biopsy on. He has found XMRV is a few this way. And, we know that blood tests are missing some because it can disappear (or be at extremely low levels) in the blood after you have had it for a while.

I wish you the best,
Sushi