Discussion in 'GcMAF' started by shannah, Jun 3, 2012.
ok, too expensive for now then...
Erist, I did hear from another enlander patient that he has been culturing from the original culture, adding colostrum to that in the process and says that the results is close to what he got with the original. Not tried it myself and I was told that culturing wasn't advised.
I split my original starter in 1/4ths. I was really sick/weak and got severely depressed the first round by the time I titrated up to two tsps. So I stopped and waited a month. I made another batch a few weeks ago and again started with a toothpick amount working up to two tsps and once again became so weak I am unable to function. Last time it took about three days of two tsps and this time by the third day of two tsps - about two weeks in - I am toppled.
Last night in bed, I really thought I wasnt going to see morning - odd dreams - more of my drenching sweats and shaking chills (which I have not on MAF) and heavy chest. I have been having succesive fainting spells upon awakening tha have landed me in the ER several times. And I have been back to my cardiac doctor who specializes in POTS etc to have an echo - no news - which is good - but no help either.
So when you all run into a very bad spell with this MAF 878 - do you stop all together or back off the dose or both?
What is recommended by Dr E? Does he speak of stopping or lowing dose? Has he aknowledged the negative reactions.
I want so bad to see improvement - but I don't think I can handle this level of nonfunctioning - I just cant survive this impaired. So maybe I will have to call it a day with this MAF 878?
Anyway, thought I'd share my experience so far!
I don't know the answers to any of your questions, Elisa - just wanted to say I'm sorry you're having such a bad experience with your MAF.
I'm having mildly fluey symptoms but nothing as severe as what you're having. People seem to differ a great deal in their reactions.
Elizabeth, You've already tried all the things that I can think of. Earlier on did we talk about using Benadryl for bad MAF reactions? It was something Dr Enlander mentioned I think. I've not asked him about the very severe reactions like yours though. Not due to see him for a while. Maybe send an email to this clinic and see what they say. They may have new ideas on what to do if the MAF response is too high.
I was very sick with the flu when I tried the MAF878. Don't know which of the symptoms were the flu and which were the MAF. That included a very bad night sweat that I normally associate with hormones and a very and for me unusual long menstrual bleed. Kept taking the MAF all through this except for 3 days when I was very sick with the flu early on and then a break later.
I'm sorry to hear how bad you've been feeling, Elisabeth!
I am taking a break from MAF for a while now. I think it's okay to do that. I also reduce my dose if it feels too strong for me. I have never gotten beyond taking a tiny droplet of the yogurt. Maybe 2 T is just too much for you. Who says you have to take that much?
As I understand it, the MAF works just as well at whatever dose is right for you. Is there a dose that doesn't make you horribly ill?
tiny droplet? WOW. just how strong is this stuff? i thought the injectible was stronger.
elisa...bradstreet says some autistic people do well on as low a dose as 0.1 ng (i think)! maybe you should get the injectible gcmaf and dilute it some crazy amount. i wouldnt give up on it completely....but it seems you are extremely sensitive to it.
Oh Daff, you know me by now, don't you?
I was taking .01 ng of the injectible, and it was still a little strong for me, remember?
How is your break from MAF going?
Just an update from me on the MAF878. I only had the one bottle from Dr Enlander. It made more than a months supply and I started slowly, so I froze / thawed the remainder. In total I had 58 days of MAF either in a full or half portion.
My first month on the MAF878 was very rocky because there was a bad flu going around. I do pick up the flus and my health is normally set back from them. Other members of the my family reacted badly to this flu.
The most unusual symptom over that first month plus of the MAF878 was that I had menstral bleeding off and on for 25 days which doesn't happen normally. It started after the first week of the MAF and when I was very sick with the flu so I don't know if there is any relationship.
There was a lot of pain that felt as if it was from my spine and then radiating out through my shoulders, hips, legs etc.
My eyelids (left and sometimes right) started flickering after a couple of weeks and then occured for all of my waking hours off and on and is only beginning to calm down now.
It was a time of largely low physical functioning. The last few days 55-58 were the best of that entire time. Began to pick up and could do more around the home. Only able to get outside for short periods every few days at the best.
Then when I finished the MAF the flu hit me again (and my mother and other family members at the same time). My husband has it now. I've been in bed for a week. Picking up again now.
Because of these flus it is hard to tell if the MAF878 has helped me at all.
When I compare my daily symptom diary between the MAF314 and the MAF878 it is clear that the 314 returned better improvements in a shorter time. It may be that if I kept taking the MAF878 I would also improve in a similar way but I won't be doing that right now.
I have been offered some more MAF314 by another patient in London. It should be here next week. Will let you know how I get on.
I am about to take my 14th injection of GcMAF at 2.5. I am now getting more side effects, more inflammation and I am very cold in the morning. Takes my body a while to warm up. ( like a half a day) I feel like I have a mild cold off and on and my cognitive abilities are waning. I see my ME CFS Doc in two weeks (160 miles one way). I am getting discouraged. More pain, more inflammation makes Jack an even duller boy (body). Any thoughts out there my friends? Anybody work thru this already? I have accepted being as ill as I am, but I don't think I can accept getting sicker which I feel I am. Maybe Fridays wasn't the best day to start my weekly GcMAF.
Xandoff, if that is 2.5 mls (?) and your GcMAF is from GcMAF.eu, that is a very big dose! Do you know how many nanograms you are injecting (that is the actual measure of the amount of GcMAF you are taking)
If you are getting inflammation and feeling worse, taking a break could help a lot--allows the inflammation to go down. You don't really "work through" inflammation--you let it die down and take some things to mitigate it.
I'd be happy to chat with you about this if you are up for it.
I am confident I am taking the right amount. My real issue is pain. I went off all my pain meds last December and life is very hard without them. I will see my Doc on October 2nd so I can go over all this with him. I don't think I can handle this illness without pain relief. I didn't do well with narcotics because I didn't understand THEN that I will never be without pain. I am ready to accept much more pain now, and that it is part of this illness for me at least. I have a lot of mechanical problems with my neck and back that get amped up by ME CFS. Thanks for your thoughts Sushi. All my best to you.
So sorry about the pain. I have had a lot of pain from mechanical issues too and a cranial osteopath has just discovered (by xray) that one leg is congenitally shorter than the other. I am hoping that dealing with this will relieve the pain. Have you had good treatment for the issues with your neck and back? Inflammation can certainly make these worse.
In 2005 I had a cervical disectomy in whiched they removed two of the discs in my neck and put in a titanium cage and screws, that launched my ME CFS into orbit. I had pain for two years before the surgery. When I first had neck pain VIOXX took care of it for two years and then gave me an ulcer. Maybe that was the beginning of this disease. Just a gut feeling. Pun intended. I got reallly sick after the surgery and wasn't diagnosed with FM until 2008. I have DDD, arthritis of the spine and neck. ME CFS just amps it out. My pain volume control gets stuck. Cranial osteopaths are fantastic in my view. I had one diagnosis my brachial plexus nerve as part of the problem., which was right on.
All my best!
Hummm, well I've just read this entire thread cover-to-cover as it were.
I was (perhaps still am) hoping to try 878 but i'm very put off by the leaking in transit which has clearly been going on for several months now without being resolved. It sounds like Sasha is right that it is culturing in transit and that expansion is causing the leakage. Has this idea been fed back to Dr Enlander?
I want to try this but I dont want to risk spoilt product. Until i can be confident in the starter reaching me in good condition i cant really go ahead i dont think. At best it will still work but at worst it could make me ill (maybe some of the negative reports are because of spoilt product).
I feel frustrated, as in theory this sounds well worth a go, but I think I need to know that my starting point is good - i.e. product in a good condition to start.
If anyone has any new information that suggests they have fixed the delivery issue then I'd love to hear.
Dr Enlander was going to try and get a London distributor for the MAF878 (rather then sending from New York). You could contact his office and see if that ever happened.
I'm sorry to hear about your suffering, ukxmrv and Xandoff.
Snow athlete, I wonder if it would help to order the MAF 878 starter when the weather is colder?
As for my progress, I am now taking a tiny drop of the yogurt once a week and that seems to be a good schedule for me. The MAF878 feels like it causes an immune response. I get tired and flu-ish the day I take it. The injectible GcMAF gave me more of an energy boost.
I just saw this thread, am about halfway through reading it. I have been taking the MAF 878 for some time and have definitely had improvement. Can't get into it now, but I definitely want to share my experience to date. I wish it worked for everybody, but I guess one could say the same of Ampligen...or quite a few other things. I'll try to get back to this asap.
Did you get the MAF878 ready-made from Dr Enlander or did you make it yourself from the culture?
Really happy that you are improving!
Got a reply from my email today. Apparently all the packaging problems have been fixed and hey have someone sending it out in London. Will probably try it unless anyone has another problem in the next few days.
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