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

[ikke2001be]

Hi,

That is correct Sushi. He told me to skip only 1 shot because of insomnia, and then resume 1/4 injections, as before.

Regards,

K

 

[Rrrr]

Hi Rrrr,
I would like to add to your negative list
-more extreme fatigue
-headache
-painful throat
-nastiness
My negative sideeffects start normally the second day after injection, but I don't have them each time. This week they hit me very hard. I have had now 20 full dosis and still no positive effects. I am a normal to low responder.
Best regards
Hoop

thanks, hoop! but what do you mean by nastiness?

the GcMAF 101 paper is coming along. it is just that i got really "hit" this week. my eyes have been sore and bloodshot for days now (due to the gcmaf). and now i feel nausea. i can't imagine what it has been like for those of you on a half or full dose. i'm only on 1/5th of a dose (0.20 cc) and this is throwing me for a loop.

 

[Rrrr]

Fifla,

I wish you and your family the best, please stay strong for them and continue to proceed what's best for your health. You will remain in my prayer as well, take care!

filfla,

i, too, am thinking of you and sending warm thoughts your way. i am the one who met yr husband and he was delightful and i am just so sorry your family is struggling with this. please know we, this motely crew of an me/cfs gcmaf community, are here for you.

rrrr

 

[Rrrr]

Hi all

Thanks so much for all your updates, its great to hear that many are doing better on GcMAF.

I wonder if anybody has got any answer to my question - I have tested XMRV+ but seem to have many symptoms of Chlamydia Pneumonia bacteria and have responded well to Doxycycline every day now for 7 weeks. However when I added in just one NA cycsteine on Sunday I have been very ill ever since, have lost all my gains. Apparantly this is a typical reaction and indicative of high levels of intracellelular bacteria.

Have anyone of you had similar diagnoses in the past and tried a a longterm antibiotic protocol? Did you get any improvements but not get really well, hence moving onto to something like GcMAF. My guess would be that GcMAf could help with intracellular bacteria too. I wonder if KDM has mentioned this to any of you.

Many thanks for your replies

Pam

i was on long term abx for lyme for about 6 (or was it 8?) months. i did not feel any better. but i did not have C. Pneumonia, just lyme.

 

[bertiedog]

Thanks for all your helpful replies, I wish you all well with your various amounts of GcMaf plus whatever else you have to take.

I have been struggling this week with anger, I keep getting really wound up over lots of things, most unpleasant and not like me at all. I guess it must be bacteria being killed off since the addition of the one NAC last Sunday and the continued Doxy. Hope it soon settles down or I will loose all my friends! Actually I don't know why I was making a joke of it because really its anything but a joke.

 

[healthconcern]

Hi all,

I'm rather curious here, did those who start GcMaf therapy take a nagalase test before treatment? and how did the nagalase level respond after weeks/months of Gcmaf injection?

Thanks in advance.

 

[lobba123]

i took it baseline and plan to take it again at 10 or 20 shots (still at 4th shot)

mine baseline was super high 6.7U, on CFS the highest reported is at about 6

Hi all,

I'm rather curious here, did those who start GcMaf therapy take a nagalase test before treatment? and how did the nagalase level respond after weeks/months of Gcmaf injection?

Thanks in advance.

 

[healthconcern]

how about others? anyone who did their nagalase test?

 

[Vojta]

Hi all,

it's time to add some my experiences. But first of all I would like to thank all of you who bring very useful and helpful information into this thread. I'm so grateful to you.

I'm patient of KDM and I will be injecting my 6th dose of GcMAF tomorrow. I was given first shot (IV, full dose) at clinic. Then I was told to do 4 half-dose shots subcutaneously and to continue with full dose after that. They didn't tell me anything about checking up my vit D levels or calcium.

Actually I don't have my test results and report yet but during my second visit KDM told me my main problem is in gut (massive bacterial overgrowth and intolerancies/allergies). When I asked him if he thinks that I fit XMRV patient immuno-profile he told me we will see (PCR MLV was negative and waiting for serology and culture). I also have chronic EBV activation and when asked about that he just waved his hand that it is not our main concern. It's almost everything what he told me because there was really no time for discussion.

But the most important thing to share is that I feel better! After 5 shots I feel less malaise, less brainfog, more stamina and maybe even little bit more energy sometimes. Although these improvements are small I've got feeling that I'm on the right way. Generally I would estimate I went approximately from 40% to 50% (at best) of functioning in last month. However I should mention that I had already been at 50% during last July (I guess vit D and sunlight are pretty involved in this). And I also must mention that I follow preliminary diet according my intolerancies and allergies. I will have phone consult with dietologist in June.

As for side effects I think I don't have any. Just usual ME/CFS problems. But during 3rd week I felt very sick (probably the worst days in the last 6 months). It lasted almost week and I had symptoms I usually don't have. I overcomed that and now I don't observe any particual pattern related to GcMAF. Maybe I feel little better second and third day after shot (it could be also placebo effect). Also have some headaches but it can be caused by sunlight. I still have exhaustion and I crash after physical activity but it is not as bad as it was before. I was able to do some gardening almost every day last week which was impossible before.

My current hypothesis is that GcMAF turn on macrophages which suppress my EBV infection (it is too early to say that about XMRV). Diet probably helped little bit with decreasing toxin production by bacteria in gut. Could it be right?

I will update my progress when I'm on full treatment protocol. I'm little bit afraid that it is only temporary progress and I would crash back again after summer. But I wanted to give you at least some hope that treatment (at least to certain extent) is possible because I feel hopeful these days (even if it is too soon to make conclusions).

Best wishes,

Vojta

 

[serg1942]

Hi all,

Fifla, I know about your situation, and I would like to wish you the best of the luck. Be very strong. As Rrrr said, we all are with you! Any help you need and I can provide, you know how to find me!

I have been 2 weeks without following this thread, and I dont think Ill be able to go back and read all the posts I missed, so sorry in advance if I miss or repeat something.

FOR WHEN A GC MAF FORUM? It is impossible to follow a thread that long CORT please!!!! Listen to this request!!!

Hi Bertiedog,

If taking NAC makes you feel sicker, it may be detoxification, as NAC is converted into glutathione, and the detoxification system revs up.

Rrrr, I think I can definitely identify two more good side effects from GcMAF, that you might want to add to the list:

1- Less time to recover from efforts (Less PEM)
2- No need physllium anymore to stimulate motility (Better digestion)

Hi Vojta,

Congrats for your improvement!! I hope it continues this way!! And please let us know about your progress in the future!

Saludos a todos!
Sergio

 

[Sushi]

Hi Healthconcern,

This is not a very enlightening answer as a nagalase test was done before I started GcMAF but I don't have the results yet! But yes, some doctors giving GcMAF are doing baseline and later tests for nagalase.

Sushi

 

[hoop]

thanks, hoop! but what do you mean by nastiness?

.

Sorry Rrrr,

my English is not always so good, when I said nastiness I meant Nausea.

Greetings, Hoop

 

[ikke2001be]

Hi Rrrr,

As far as I'm concerned, you can ad nastiness to the list of side effects. The first two days after an injection (when I was on the full dose), I'was ready to pick a fight over the smallest issue, and said things to my family members I would normally never say. (nasty things). So I thinkk that qualifies for nastiness.

Regards,

K

 

[Overstressed]

Hi all,

I'm rather curious here, did those who start GcMaf therapy take a nagalase test before treatment? and how did the nagalase level respond after weeks/months of Gcmaf injection?

Thanks in advance.

Hi healthconcern,

I had a Nagalase test, but unfortunately it was not before I started Gc-Maf. I started Gc-Maf May 7th 2010, and I had my Nagalase test done somewhere september 2010(I think). At that time, I had received something like 20 injections, and my level was 0.7(normal, ref. 0.32 - 0.95). Note however, the lab-biologist told me that people suffering from CFS tend to have (very) low levels already. So, most likely this test will not be informative to us.

I'm curious whether (CFS)-people on Gc-Maf can confirm this Nagalase findings ? We have a person (Lobba I think) who has chronic Hep-B and his Nagalase level is high. If Gc-Maf works for him, we should see his Nagalase level drop.

Best regards,
OS.

 

[Rrrr]

test for nagalase

yes, i tested for nagalase before i started gcmaf. it is high, as expected with a retrovirus (i am xmrv+)

 

[Rrrr]

Seminar on Fibromyalgia and Chronic Fatigue Syndrome with Dr Enlander - Please disseminate widely



Dr. Derek Enlander is an internist who has a special interest in Fibromyalgia and Myalgic Encephalomyelitis (ME, often referred to as chronic fatigue syndrome). He is presently in private practice in New York City, and is on the faculty of the Mount Sinai Medical School, in addition to serving as as President of the Israel Medical Foundation. He will address the Bethesda FM/ME/CFS support group on Monday, June 6, 2011 at 2 p.m. Dr. Enlander will discuss the Xenotropic murine leukemia virus-related virus (XMRV) and his current treatment plans, including Hepapressin, an amino acid complex, as well as immunotherapy with Ampligen and Gc protein-derived macrophage activating factor (Gcmaf). The event will take place at Christ Evangelical Lutheran Church, Luther Hall, 8011 Old Georgetown Road, Bethesda, MD, 20814. The venue is accessible by Metro (free circulator bus from Bethesda Metro) and by bus (Ride-On number 34).

<http://www.enlander.com/>http://www.enlander.com/

 

[Berthe]

Concerning the Nagalase, prof. De Meirleir told me that he and dr. Cheney already tested some patints and the levels of nagalase were quite high. Even higher than with HIV and cancer. (up to 6, something) They work together on a publication about it.

Next week when Jan the nurse will have to draw my blood for the usual bloodtest I will ask if Redlabs can check my Nagalase too. Keep you posted.

Love,
Berthe

 

[Sushi]

Warning: Anecdotal!

Some of us have been wondering if taking LDN reduces some side-effects to GcMAF. Since only a few of us here are taking both, I posed the question on the Dutch forum. One answer so far (hope no one minds me reposting here!)

Sushi

Hi Sushi,

Excuse me for my bad english. I hope you understand what I mean.

I have been using LDN for about eight months. I have taken 4 injections of GC-MAF using 1/8 of a vial each. Sometimes I have headache and dizzines but further I have no side effects. And just like you i don't have sleep problems. I can already do more things than I could do for using the GC-MAF.

It surprised me to, because normally I always react strongly to medications. I thought I had few side effects because I only 1 / 8 of a vial each. But maybe, now that you mention it, it is because of the LDN. Who knows?

Daughter of mamoes

 

[healthconcern]

thanks for these great feedbacks guys!

Hopefully they are improvement in the nagalase reading for those who did the test soon! =)

 

[soulfeast]

Joey are you using a second ferment with juice or drinking the fermented sugar water? I have made water-juice kefir in the past but stopped for one reason or another, cant remember. You are enticing me to try again. Kefir lady does have very good grains. The milk grains are not yeasty like other grains I have gotten. I stopped milk kefir out of concern of the glutatmates.

I get mine from kefirlady.com. They come with full instructions. All you need in advance is organic sugar, organic molasses, a big glass jar, some cloth + rubber band to cover the jar, mineral water or reverse osmosis water + minerals (I use cell food).