I POSTED THIS BACK IN AUGUST 9, 2012, SO THIS IS A RE-POST AND I HAVE NOT UPDATED IT YET.
here is my story with gcmaf injectable (i am now experimenting with MAF878, too, along with the injectable, but the below story is about my gcmaf injectable experience).
Aug 9, 2012
Hi All,
Summary: My 1.5 yr treatment regime (gcmaf + nexavir) has helped me. But there have also been mixed results. I've been much better, sometimes (even able to exercise). And at other times, I've been bedridden. But of all the times I got bedridden this past year while on gcmaf, i don't think any were due to the gcmaf itself, except the first 6 wk bout of feeling poisoned and being bedridden. Which you will read about below. -- R
1 Year Into the GcMAF/Nexavir Treatment Regime:
R's GcMAF + Nexavir Journey So Far
May 28, 2012
After 22 years of being sick with ME/CFS (I spend a lot of that time homebound and bedridden), I started on Nexavir in March 2011 and with KDM's gcmaf in April 2011.
The Nexavir I had to build up to slowly, but was eventually able to tolerate it (2 ml per day).
The first 7 weekly shots of gcmaf (at 0.20 ml per week, either subcu or IV shot) were fine. Then I started to feel very sick and "poisoned" and stopped for 6 wks. Feeling poisoned is not usual for me, but also it is not unusual. It has happened a few times over the past 20+ years. Anyway, this time it was a rough ride for those 6 wks, as I felt super sick from the gcmaf. I think I was on too high a dose for me. (My doctor in Europe says one should back off if the dose causes too much of a reaction: Both take a break for a few wks or months, and, likely, when you re-start again, lower the dose.) After 6 wks, the poisoned feeling passed. I then lowered the gcmaf dose to 0.10 ml per week. A tiny dose, and I stuck with that tiny dose from then on. After another few weeks or month passed, I started to be able to go on walks for the first time in 3 yrs and I could socialize some, which was rare for me. It was the gcmaf + nexavir, I'm sure. And my walks were substantial, like 45-50 min walks each day.
After a month of this good period, I crashed due to doing other additional treatments (a round of abx and some other things). It was a treatment-induced crash, unrelated to gcmaf and nexavir. I spent most of the next 2 months very sick and in bed or homebound.
When I got better 2 months later, I though I was on the mend. But then after family visits I got a cold and was very sick for an additional month and homebound some more. Plus I had a lot of work for my (home-based part time) job. After all that passed and after the cold passed, I was able to start to walk again and to my surprise, I also began to do indoor biking in my living room, which was amazing, as I have never in 23 yrs of being sick been able to do that. Amazing.
For about a month I was either walking or indoor biking about 20-45 minutes most days. During this month I was sometimes getting mild PEM ("postexertional malaise"). I pushed past it and kept exercising daily. Then one day it was not mild PEM, it was moderate PEM. Yet I kept pushing past it; I was just so excited to be able to exercise and move my body again. But it was stupid. I should have respected the PEM and rested and not exercised for a bit. I didn't respect the PEM. So I crashed hard. Once again I was bedridden/homebound. This time for 2 months. I stopped gcmaf for most of that period but I re-started it after a 6 wk break. Then 2.5 wks after I re-started it, I started to be able to go on short walks again (10-20 min each). I went on about 3.
Then I crashed again, just a week or so later. So it is a rollar coaster in my world!
Another 2 months passed, and I got over that crash. I am now very wary about exercising at all. Jeeesh.
The complicating factor is that I'm not sure about all the other aspects, like:
1. Did adding in Vitamin D help bring on the most recent 2 month crash? (I have a hard time with Vit D, but my Vit D levels are super low in my blood work, so I discussed with my European doctor and we decided it was okay for me to do 1000 iu per day. So I started that about 1 month before the crash. Did it contribute to the crash?)
2. Did re-starting Artesunate help get me out of the most recent 2 month crash, or was it just the passage of time that got me out of the crash?
3. Did starting cordyceps mushrooms and then reishi mushrooms help get me out of the most recent 2 (separate) 2 months crash, or was it just the passage of time? I think it was the mushrooms.
4. Did re-starting gcmaf help get me out of the most recent 2 month crash, or was it just the passage of time?
I have a feeling that re-starting the gcmaf did indeed help get me out of the crash enough to go on walks again, when I was walking. But I'm not sure.
== NKC TESTS ==
Also, new topic related to gcmaf: My Natural Killer Cell Function test results improved a great deal after being on GcMAF + Nexavir for 1 year.
Pre-Gcmaf
May 2009: Quest Labs NK Cell Function LU30 test results: 25 (ref range 8-170).
March 2011: VIP labs NK Cell Function LU30 test results: 17 (ref range 8-170).
Post-Gcmaf
April 2012: after 1 yr of gcmaf + nexavir, Quest NKCF LU30: 48 (ref range 8-170).
== NAGALASE TESTS ==
1st test in March 2011 (pre-gcmaf): 1.90 (ref range of 0.32-0.95)
2nd test in July 2011 (after 11 shots of gcmaf, most 1/5th of a dose): 0.80
3rd test in October 2011 (after 25 shots of gcmaf, most at 1/10th of a dose): 0.60
== MY PERSONAL WARNING ABOUT DOSING ==
It is my opinion that many ME/CFS patients are starting on too high a dose of GcMAF. Perhaps HIV or cancer patients can do this without bad results. But I have seen a number of patients get sicker on GcMAF and I think it is because they are on too high a dose. And it seems like (even if the science does not show this) that the gcmaf accumulates in the body over time. So it can accumulate and hit you after 5 or 24 doses. So be careful! I suggest starting at 0.10 cc once per week. Too high a dose can hurt you, by causing too much inflammation, more than your body can handle. My doctor in Europe says to be on the dose that does not hurt you. Even on only 0.10 cc per week, I still feel a punch. I am still bedridden for 1.5 days after I do that shot. Even a year after being on gcmaf. And I recently doubled my usual dose to 0.20 cc of gcmaf injectable and I was flattened for 4 days. So it still packs a punch, even after being in the freezer for 1.5 years. I'll not do 0.20 again. I'll now stick with 0.10 cc every 3 weeks or so. Especially since now I'm starting MAF878 -- the MAF yogurt from Dr. Enlander, too.
