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MAF 878 Available - Anyone already using it?

Discussion in 'GcMAF' started by shannah, Jun 3, 2012.

  1. ukxmrv

    ukxmrv Senior Member

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    Madie, does it say "full cream milk" on your instructions that came with the starter?

    (there may be different versions around)
  2. madietodd

    madietodd Senior Member

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    I am so glad you sent me back to the instructions.

    Yes, I completely mis-read that as "cream." Furthermore, right beside it it says "goat milk if intolerant."

    [slaps forehead]
    ukxmrv likes this.
  3. Forebearance

    Forebearance Senior Member

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    Hey you guys,

    I've been taking a little bit of the yogurt every day now. Either I am tolerating it better, or freezing it has reduced its potency. I put it in the freezer because I'm not sure I could tell if plain yogurt has gone bad! I scrape off a little every morning. So far I'm not feeling much of anything. Yay!
  4. ukxmrv

    ukxmrv Senior Member

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    What day are you on Forebearance?

    I've also frozen some. The mixture in my fridge just keeps getting smellier and smellier. It hate the smell and taste of milk products so I am having to mix it with fruit or flavoured yoghurt to get it down without retching at the moment. Sorry if TMI!

    I'm taking the full dose. The spots have started today. Angry red lump on my face. Also insomnia. Might be a little rocky for me from now.
  5. Forebearance

    Forebearance Senior Member

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    Geez, that's too bad about your signs of some wars going on inside you, ukxmrv.
    I hope it will get easier for you. Or, I hope it will be worth it.

    I've been taking this stuff for a month now. But very small doses.
    Forebearance
  6. pinkytuscadaro

    pinkytuscadaro

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    Well I received my second starter from Dr. Enlander and it arrived spilt in the baggy; it also looked a lot more watery than the first batch I received,I put it in the refrigertor.
    I tried contacting the office via Ebay 2 times and nobody has gotten back. Today I decided just to try and make it: I had all the ingredients in my glass bowl and dumped the starter in only to smell that it was definately spoiled. Too late I had already poured it. I am always doing dumb things like this.
    I wonder what will happen? If any of the active ingredients are still alive?
    I hope they get back to me soon.
    I have been taking the yogurt every day. I feel a little more tired but that is about it.
    Pinky
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Why not try calling his office? He posted on Facebook that he would take it back if it came spilled or spoiled.

    Sushi
  8. ukxmrv

    ukxmrv Senior Member

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    Hi Pinky,

    It is not a good sign that your second batch arrived split in the bag. Just wish that there was a way we could tell if it was "off" or not. A friend received her first shipment in glass which had broken. Hers was a very bright yellow and smelled bad she said. From talking to her it appears that the MAF878 I got (unspilled) was a much lighter colour but to my nose still smelled awful. Very yeasty.


    The tiredness could be a reaction to the MAF. How are you sleeping?
  9. pinkytuscadaro

    pinkytuscadaro

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    Hello UK
    I have been waking up earlier which is a good sign. However I also just added Hydrocortisone 25mg a day and that has been a great help to me. It is hard to know what is causing me to wake up earlier. The waking up earlier has just started. I was extra tired prior to this. I am also still very tired during the day but am able to do a little more than usual.
    I think the HC may be helping me out on this too.
    Does anyone have a contact # for Dr. Enlander?
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Derek Enlander MD



    860 5th Ave, New York, NY 10021
    Local Phone: (212)794-2000
  11. Forebearance

    Forebearance Senior Member

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    Okay, I can now definitely say that the MAF 878 is giving me more energy and is making my sore knee hurt less. It is also giving me the worst gas I have ever had! I guess there must be a war going on in my digestive system.
    slayadragon likes this.
  12. Rrrr

    Rrrr Senior Member

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    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
  13. ukxmrv

    ukxmrv Senior Member

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    Thanks for the update Rrrr.

    If I am lucky enough to get a boost from the MAF878 I promise that I will not overdo it and exercise ;) . Really sorry that you got to the position of being able to do some exercise (wonderful!) and then relapsed again (terrible!).

    It is so hard to know what is happening as you are taking so many things BUT with that lot I would expect for more progress than you are having or at least a more steady progress! This is such a frustrating disease. I hope that Dr Enlander has some answers or at least some ideas.

    If I was in your position I'd stick with your plan of getting the starter from Dr Enlander next week. I'm thinking this because you started off with a small dose and worked your way up to 2-3 oz. It may take more time at the full dose to see the MAF878 working.

    Because I took MAF314 previously I keep comparing the two. It's too soon for me to judge my own response to MAF878 but so far I'm disappointed that I didn't get the huge immune system bang early on. It's been there but much smaller than with the 314 version. Less of a dramatic sore throat and glands. Less of the huge painful facial spots, the irritability. I've not had the immediate strong stomach help from the MAF878 so far. Some but not as much.

    I'd like to know that it is working by the strong response (even if it is bad) as the MAF314 was strong and then my base ME symptoms improved.

    When I took the MAF314 I kept a diary for the first 43 days only. When I look back on that diary I see that the effects were much more severe (good and bad) but that slowly over time I started recording the odd good day or new effects that began to occur more often. I began to leave the house more often and reported less PEM.

    I also recorded more and more often that I felt cold at night on the MAF314. That's good for me as normally I overheat and can almost burn up in bed (Valtrex helped this a lot as well). (I've been meaning to start recording my daily temperature as Mellster suggested previously on this thread).

    On the MAF 314 I started off sleeping better then it was worse, then they alternated. Started recording that I was waking a little earlier than normal and feeling better. Just small things like this.

    The long lasting good effects of the MAF314 weren't apparent for a good couple of months and I had finished. My exercise endurence increased. My stomach was much better. There were less fluey episodes. This didn't last sadly when I stopped taking it and I started to return to "normal".

    Hope some of this ramble helps. Would be good if your better test results would translate into less ME symptoms!
  14. Forebearance

    Forebearance Senior Member

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    Hi Rrrr,

    I'm so sorry to hear about your current crash and so glad that you are feeling well enough to post again.

    I didn't get my C4a tested while I was on the GcMAF, but I bet it was higher. It was like a double-edged sword for me. It made me feel more inflamed (poisoned) but it also gave me more energy. The MAF 878 seems gentler and easier to tolerate to me. But maybe it doesn't do as much.

    Could it be possible that it is only safe for you to take the injectible GcMAF in a pristine environment?

    I wonder if you will notice any difference when you take some freshly made MAF878.

    Fore
  15. pinkytuscadaro

    pinkytuscadaro

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    OMG!!!!
    I had hoped the dizziness would go away but it hasn't.
    I will ask my nurse about that clive thank you so much.
    I ran out of yogurt 2 days ago and I am still dizzy.
    I do not know what brought this on but started maf878 a couple of weeks prior.
    Pinky
  16. ukxmrv

    ukxmrv Senior Member

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    Pinky, it's so wierd how the MAF878 hits us all in different ways. Dizziness doesn't sound good at all.
    Anything else happening?
  17. pinkytuscadaro

    pinkytuscadaro

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    The dizziness is so overwhelming that I can not discern any other differences.
    I am wondering if I somehow caught an inner ear infection?
    My ears do not hurt or feel swollen?
    I do not know how the yogurt could be causing this?
  18. Forebearance

    Forebearance Senior Member

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    Yikes, Pinky, that sounds scary!

    By the way, I like your new picture, ukxmrv.
    ukxmrv likes this.
  19. Rrrr

    Rrrr Senior Member

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    pinky,

    i'm so so sorry you are experiencing this problem. try to stay calm, as being anxious does not help dizziness issues, and it can even make them (temporarily) worse.

    it sounds like some type of inner ear or vestibular issue, which could or could not be related to the MAF. was your MAF moldy at all? mold brought on my vestibular injury about 4 yrs ago. that injury came after cleaning up some mold. and it resulted in permanently jumpy vision for me, which is different from dizziness. but i had a few days of dizziness before it "settled" into this permanent jumpy vision (which makes my life a lot harder than before!). for most folks, the jumpy vision from a vestibular injury goes away in a few weeks or months, after the brain re-wires and "compensates" for the injury. mine did not. they don't know why. but in the end, i saw a doctor who knew ME/CFS and lyme, and he said that our brains are over taxed as it is, and the mold exposure was the "straw that broke the camel's back" for me, and my brain just could not compensate any more.

    but keep in mind that according to tests i had at the "Balance Center" outside of Boston, i had lost 83% of my vestibular nerve on one side. they told me it was likely an injury i got from having an inner ear virus. but i don't believe it. i think it was from cleaning up the mold, because it happened right after cleaning up the mold.

    anyway, your dizziness could go away on its own, or not. meanwhile, you may want to research different types of dizziness and vestibular injuries. this is a good website for vestibular disorders: http://vestibular.org/understanding-vestibular-disorder

    for all you know, this could be an easy fix! for example, there is another type of problem that comes from some type of crystals dislodging in the inner ear, and you can get that fixed by going to the hospital and they do some type of head movement on you and they settle back into place. if rich van k is reading this, he may be able to tell you more. this problem is called "benign paroxysmal positional vertigo" or BPPV. look it up online and there are even videos of how to move your head so the crystals fall back in place.

    rrrr
  20. pinkytuscadaro

    pinkytuscadaro

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    rrr, thank you for your i mformative post.
    I do not think the yogurt had any mold on it.
    I did want to caution everyone: the first maf I received was yellow and the consistency like that of kefir.
    It was fine and I made my batch and all was well, however the second batch that came was bad!!!!!
    The difference was the product was very runny and had spilt in the baggy a little. When it arrived I refrigerated it and contacted Dr. Enlander. I didn't hear back from Dr. Enlander for 3 days so I decided I would just make it.
    When I dumped the started into the kefir milk and yogurt it had a spoiled smell, definately different from the first batch it smelled rotten. I got a call back from Dr. Enlander by this time and he tried to convince me it should smell like that. If I had not already receved maf that was not spoiled I would have taken his word that it should smell like that. I poured out the rotten stuff and am waiting for a replacement from Dr. Enlander.
    I am writing this because of others who complained about the taste? The stuff that was good tasted fine, sour like yogurt but not bad. When I was reading others posts about how awful it tasted I thought, wow I do not think the stuff taste that bad but now that I got the bad stuff I am wondering if that is what some of you have gotten, spoiled product?
    I would have not known that it was bad if I had not recieved the good batch first.
    Thank you so much again rrr for the very imformative post.
    Pinky
    ukxmrv likes this.

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