hi all,
thanks soooo much for this thread and all your experiences. very helpful. as always. what a great community of patients we have!!!
i've been on MAF878 for 1 month. i bought it pre-made (already in yogurt form) direct from Enlander, when i saw him 2 months ago. they no longer sell the pre-made stuff, so i'll get the starter kit when i see him again next wk.
when i got the pre-made MAF878, i had to wait a month before i could use it. so i put it in the fridge. they told me i had to drink it before 2 months. so that was good. when i did open it, 1 month after getting it, it was lumpy. so i put it ALL in the blender and blended it.
which makes me wonder WHY we can't use a metal spoon when we stir it????? anyone know? obviously i had it in a blender that had a metal blade blending it. i did that just once, to make it creamy, not lumpy.
i started the MAF878 on june 20th, and it is now july 25th. i started at a tiny tiny tiny dose -- 1/4 teaspoon per day -- and very very slowly built up to 2-3 oz per day. i am also on gcmaf injectable from KDM.
here is what i've experienced on the MAF878:
1. soon after starting, i had better bowel movements. easier ones and more "regular." that wonderful symptom (better bowel movements) disappeared after about a week. boo hoo.
2. better sleep.
that is it! nothing else from the MAF878. no other immune activation symptoms, no increased energy. nothing like that. i will say that i started doing the MAF878 while in a bad relapse. i got the relapse after i began doing so well on the gcmaf injectable that i was able to exercise again (outdoor walks and indoor exercise bike). that ability to exercise was a HUGE new thing for me. i have not been able to walk much in the last 3 yrs. so the gcmaf injectable helped me. but then i over did it and walked/biked too much (for me -- which was not really that much at all), and BAM! i got slammed with a relapse.
so reminder: if you start to feel better, DO NOT OVER DO IT. the PEM relapse is worse than the original baseline illness.
back to my update:
the MAF878 may have gotten me sort of out of that PEM relapse. but not really. i'm still stuck in bed or near bed most days. still not able to go out much.
i lowered my gcmaf injectable while on MAF878. pre-starting the MAF878, i used to be on 0.10 cc of the gcmaf injectable each wk. that was enough for me after finding out from trial and error that 0.20 cc per wk was too much and made me feel "poisoned" -- plus, last time i checked, my nagalase was 0.67 (in the ref range). so i was on a KDM prescribed "maintenance dose" (which was also my usual dose before he called it my maintenance dose). that last nagalase level check was done in Sept 2011, i think. and i have not checked it since.
but i did check my c4a, and it is 25,617!!! (pre-gcmaf/MAF it was 15,xxx. the reference range is 0-2830 ng/mL)
anyway, since being on MAF878, i dropped down to 0.10 cc of injectable gcmaf every OTHER wk, instead of once a week. that was fine. no bad reaction. just increased exhaustion for 1-2 days after the injection. which is normal for me with injectable gcmaf.
but 3 days ago i tried an experiment: 0.20 cc injectable gcmaf, and BAM! i was hit hard and slammed back into bedridden hell again and very sick.
sigh...
so long story, short: MAF878 does not seem to help me (yet -- i'll try it for another 2 months at the full dose before i give up), and the gcmaf injectable has resulted in 17 months (which is how long i've been on it now) of a weird roller coaster: a LOT of bedridden hell, but also strange patches of being much better and able to walk and even exercise.
in the end, i'm just not sure about either gcmaf or MAF878. which likely means it is not helping a lot. right?
there have been a lot of bumps in the road during this 17 months that make it hard to know what gcmaf injectable is really doing for me, including a 6-wk period of feeling poisoned when i first started it (that was when i learned to drop down to only 0.10 cc per week, not 0.20); a cold that lasted 1 month (that i got from my nephew, who had it for 2 days); a bad reaction to abx that took 2 months to get over; and that aforementioned PEM relapse from exercise that lasted 3-4 months (that i'm sort of still in); etc etc etc.
by the way, i'm also on nexavir (2 ml for 5 night per week), and injectable b12. and lots of other things.
oh, and i've had a lot of hairloss too, like lou. not sure if it is from gcmaf or low iron. last time i had hairloss i think it was due to low iron because my hair grew back again when i began to take iron. but then i stopped the iron again so i could take artesunate (cheney says not to take artesunate and iron at the same time), so it could be low iron again. so i'm back on the supplement called BloodBuilder, which is a natural form of iron. we'll see. takes a month to kick in for me. last time i was on it after experiencing hairloss, it took a month before i saw new hair growing back in.
or i could have hairloss from the gcmaf. no idea.
i do think the artesunate helps me. so i regret that i have to be off it to take iron.
rrrrr