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

[Wayne]

This is my first post on this thread. I know close to nothing about this topic, but did run across a reference to it on:

TheBetterHealthGuy.com website

I just discovered this website yesterday, and although his primary focus is Lyme, he has a wealth of information on most things pwME/CFS are interested in. I currently expect to start using this website fairly extensively to learn more about his comprehensive approach to chronic health conditions such as ours.
............................................................................................

Here's what he had to say about his own experience with GcMAF:

I continue to do quite well though did have a difficult year with inflammation resulting from GcMAF therapy. I had planned to stop GcMAF injections around July after nearly a year of using them, but it was suggested at that time that I continue for several more months. I'm hoping to be done with them in early 2013 if not sooner.

GcMAF was a difficult and wild ride. While it has been very helpful for some people, it seems to promote inflammation in many with chronic Lyme disease. In over 15 years of treating, it was by far the most difficult treatment I have ever done. Hopefully, the longer-term benefits will be worth it.

I did recently have a session with a consultant that looks at your blood under a microscope, and he commented that my immune system looked like that of a teenager. I do feel like it has helped my immune system, but it has not been easy. If pursuing GcMAF therapy yourself, it is important that you are working closely with a practitioner that can support you in the event that inflammation becomes a significant issue. It seems that people tolerate GcMAF better with much lower dosing that what is used for other conditions.

 

[lerae]

Hi Scott-
weve emailed each other about lyme and using Gcmaf. this forum is great, and the people are woderful.
you and I have both seen dr. K. ....who I assumed prescribed your Gcmaf as well. I also reacted violently to it.
well, not that you did to that extent. So, I caution patients who have lyme to go very slow. There is now a specific lyme protocol. when I started it, it was in the lyme guinea pig stage. I guess now they know how to give it to lyme patients better.
Barbara

 

[ukxmrv]

Hi Wayne, Scott is a great resource on different treatments. I saw a while back that he also got some MAF878 but I am not sure how he is getting on. Been a while since he posted on that.

 

[Daffodil]

Hi all. In keeping with this roller coaster ride, the last few days have been better. I accompanied by mom to Buffalo by bus to see a surgeon. She can barely walk and I had to carry bags and push her in a wheelchair for much of the time.

I packed, unpacked, ran around almost like a normal person. I even went shopping and I didn't have to! When I got home, instead of collpasing on the floor and crawling to my bedroom, I began to unpack everything and wash the luggage. My mom was so shocked. I slept for one day and today, I am up and about again, cooking and cleaning.

The brain fog is still there, the feverish feeling and sick feeling is still there much of the time, but the last 3 days show definite progress in endurance. I feel like it is the cumulative positive effects of the GcMAF, but I cannot rule out the short course of Xifaxan.

Next week, I fully expect to be suicidal again because that's how this has been going....but the big picture seems to be changing.
xox

 

[Shoesies]

Oh Daff!!!!!! I am so so happy that you are having better days. I know it has been tough on you lately. Sending up good wishes for these days to continue.

 

[Daffodil]

thanks shoesies)

i still need naps daily. i do notice i am typing a little faster, making less mistakes etc...hope this is the start of something good...

 

[GcMAF Australia]

Hoorah for Daffodil
I am so glad for you

 

[Daffodil]

thanks gcmaf i went on to make vegetarian crab cakes with sauce and apple bread today too lol now i am totally pooped. people actually live like this everyday....weird

 

[Shoesies]

Well, I had some improving after starting on some supplements and resting as members here suggested. Third week on GcMAF. I made the rookie error of pushing too hard once I got a little energy. <==== of course my kids saw me up and needed forty hundred eleven things. Now I am back to not sleeping and on bed rest, because I have to not that I want to. This sucks. Period, end of story...that is all.

 

[Daffodil]

{{{{{{{{shoesies))))))))))

 

[Shoesies]

{{{{{{{{shoesies))))))))))

Thanks Daff. I will try and get to bed early and pray that sleep will not elude me. Hope your good days are still rolling.

 

[Forebearance]

Hi everyone,

I'm stopping by to report that I'm trying something called Immutol, which contains beta-glucans. It is supposed to activate macrophages. I had such bad inflammation from the GcMAF that I decided to try this route instead. So far it has been agreeing with me and making me feel a little better.

Forebearance

 

[Shoesies]

This is my sixth shot of GcMAF. I am handling it well now. I get a bit tired the morning of the shot...and by afternoon it is better. I have more physical stamina. My symptoms are still here...PEF, brain fog, sinus/viral issues, overwhelming fatigue. The inflammation is much much better. I did have a period of serious lymph issues the first month. So, I believe that with the supplements, monlaurin, super probiotic yogurt and colostrum and cucurmin and GcMAF and anti-virals I am seeing some improvement. The doctor got the Lyme testing back and it is positive. They now want to do PCR DNA testing for mycoplasma. Personally I think we should just go on doxy for the year and the flagyl for six weeks. Yes, I said we...my husband had a nagalase test also as his EBV results reactivated. It is as bad as mine. He has low Vit D. My D 1, 25 was 133.1 so I am off Vit D for now. I really think we are getting somewhere but it appears not quickly. Sigh. Now the husband has decided since he thinks lyme may be able to be passed and ebv can be and mycoplasma def can be....there will be no kissing or intimacy for the entire year. YEAH, GREAT. Shoot me now!

 

[GcMAF Australia]

This is my sixth shot of GcMAF. I am handling it well now. I get a bit tired the morning of the shot...and by afternoon it is better. I have more physical stamina. My symptoms are still here...PEF, brain fog, sinus/viral issues, overwhelming fatigue. The inflammation is much much better. I did have a period of serious lymph issues the first month. So, I believe that with the supplements, monlaurin, super probiotic yogurt and colostrum and cucurmin and GcMAF and anti-virals I am seeing some improvement. The doctor got the Lyme testing back and it is positive. They now want to do PCR DNA testing for mycoplasma. Personally I think we should just go on doxy for the year and the flagyl for six weeks. Yes, I said we...my husband had a nagalase test also as his EBV results reactivated. It is as bad as mine. He has low Vit D. My D 1, 25 was 133.1 so I am off Vit D for now. I really think we are getting somewhere but it appears not quickly. Sigh. Now the husband has decided since he thinks lyme may be able to be passed and ebv can be and mycoplasma def can be....there will be no kissing or intimacy for the entire year. YEAH, GREAT. Shoot me now!

Fantastic
maybe i can shoot you with some GcMAF
Speaking at tick/Lyme conference in Sydney in a few days time
-on the use of GcMAF in Lyme treatment
High D 1, 25 -may I suggest benicar?
https://chronicillnessrecovery.org/
cheers

 

[Shoesies]

Fantastic
maybe i can shoot you with some GcMAF
Speaking at tick/Lyme conference in Sydney in a few days time
-on the use of GcMAF in Lyme treatment
High D 1, 25 -may I suggest benicar?
https://chronicillnessrecovery.org/
cheers

Thank you. I am researching the link info and printing it out for my two doctor appts this week. Perhaps one of them will bite. I felt some of the info about inflammation resonate. There have been so many tests over the years and so many relapses. I am weary, but moderately hopeful.

ETA - I have read about the use of GcMAF in Lyme. I intend to continue. It appears the husband will be aquiring his own GcMAF.

 

[GcMAF Australia]

Thank you. I am researching the link info and printing it out for my two doctor appts this week. Perhaps one of them will bite. I felt some of the info about inflammation resonate. There have been so many tests over the years and so many relapses. I am weary, but moderately hopeful.

ETA - I have read about the use of GcMAF in Lyme. I intend to continue. It appears the husband will be aquiring his own GcMAF.

All the best

 

[ukxmrv]

Really sorry to hear that Forebearance. I did try the Beta Glucans a while back but I can't remember what my response was, Hope that things improve for you.

 

[ukxmrv]

Shoesies, so sorry to hear about your husbands ban on kissing etc! I'm glad mine doesn't read these on line groups.

 

[mellster]

So, I believe that with the supplements, monlaurin, super probiotic yogurt and colostrum and cucurmin and GcMAF and anti-virals I am seeing some improvement.

If you substitue GcMAF with MAF314 and anti-virals with natural anti-microbial supplements, all these have been a building block for my recovery process and I still take them today.

 

[Sushi]

[quote="Shoesies, post: 340356, member: 9584"...The doctor got the Lyme testing back and it is positive. They now want to do PCR DNA testing for mycoplasma. Personally I think we should just go on doxy for the year and the flagyl for six weeks. [/quote]

Just doxy is probably not enough for chronic Lyme. Most of the Lyme docs give a "cocktail because the critters have to be hit at several stages of development and some are hard to target.

Good luck!

Sushi