Discussion in 'GcMAF' started by CindyWillis, May 6, 2012.
Im looking into this at the moment, cool.
What's the difference besides semantics?
I have a couple of thoughts on the method of dosing that Dr. E. is using for Cindy. Remember, she had been taking GcMAF at a relatively low dose, 25 ng, for over a year before Dr. Enlander started increasing her dose. Also, she has not been sick for many years. I am not sure how these two things may play together, but possibly, having taken GcMAF for so long before raising the dose, enough pathogens have been "pacmanned" so that she is not getting as much of an inflammatory response as she might have, had she raised the dose in the beginning months of treatment.
Her story is very intriguing to me because, though I have been sick a long time, I have also been taking GcMAF at first 50 ngs then 25 ngs for a bit over a year. I started with 50 ngs, briefly tried raising the dose (under medical supervision) and I definitely could not handle more at that time. Even at 50 ngs, I had to take a break of 3 months due to inflammation, after 6 months. Then I was restarted at 25 ngs and have had no side-effects at that dose.
Maybe now, after all these months on GcMAF, I too would be able to slowly raise my dose without side-effects. My immune tests have mostly normalized in the past year, I do have measurable inflammation but not at a very high level. I'd guess that my overall symptoms have improved about 30% in a year. I am also taking GcMAF from the same source as Cindy.
I will be asking my doctor about this soon, but at the moment I am considering the hypothesis that taking GcMAF at a tolerable level for long enough, might prepare the ground for being able to tolerate a higher dose. Cindy's experience is certainly heartening.
Protocols for GcMAF are certainly experimental at this stage and it is hard to predict who will respond and who won't--yet the experience of some of the doctors giving it, indicates that certain co-infections make it harder to tolerate and need to be treated first.
My vitamin D receptors would have theoretically predicted that I would be a low or slow responder. My nagalase has slowly gone down while taking GcMAF. High nagalase is another test that some doctors are using as one criterion for prescribing GcMAF, although I don't think Dr. Enlander is.
As another note: I did have considerable cognitive problems which have slowly improved but are not healed. I also had problems with the HPA axis which seem much more normal now. I also have clinical indications that my blood volume has increased.
I also wondered about the link between the length of time Cindy has been ill and her recovery. I recovered to 95% after 12 months of first coming down with ME, I relapsed several months later though and never got anywhere near recovery again. I think there is something about the illness not getting as much of a hold and doing too much damge in the first couple of years.
It would be interesting to compare responses of long term sick patients of Enlander on GcMaf and those like Cindy, I guess only he could tell us that what they are.
i comboed betaglucans for 2-3 days within the first 6 months of gcmaf and i immediately got back severe mouth candidosis, so stopped it immediately and candidosis gone in a few days.i remember using gcmaf inj twice a week at that time.
so i think betaglucans dont work with gcmaf
today after more than 48weeks of gcmaf candida problems and all immune suppression diseases are totally gone, i am even using interferon inducers by trl7 activation and intf makes immune suppression itself by lowering neutrophils but even getting neutr to as low as 29% had no effects on immune system, no candidosis, no flu, no pains, just fever 38.5 but that s interferon made by dentric cells and macrophages after stimulation by trl7 agonsists
i guess today my nagalase is fully normal, i will retest nagalase in july
so betaglucans not working, at least for me
trl7 agonists can activate dentric cells as betaglucans but their effect is very strong so absolute monitoring by a doctor especially on CFS
Over the years I've tried homeopathy a few times from various nosodes, to detox combinations, for inflammation etc. I never had any benefit.
With the K-Maf I tried it and got those effects. I then repeated the trial twice because I couldn't believe it and thought something else was causing it.
I also muscle tested it to make sure it wasn't a sensitivity issue and dosed accordingly.
It's still beyond me, I can't understand how it can do that. I still haven;t taken it for longer than a week at any one time because I found it quite hard hitting. And there's still a question mark/doubt in my mind which is whether those effects are really due to macrophage activation. But for sure it does something.
Your story is uplifting and inspiring. The more details you reveal the more I think you and I actually met at his office a couple weeks ago. I wish you continued improvement- and hope from the bottom of my heart that you reach 100% health.
For everyone reading these accounts I think it's necessary to balance out what Dr. Enlander told Cindy with what he told me a couple days ago- namely, that GCMAF is not a cure - and that not a single patient of his is in complete remission.
I was very pointed in my questioning to him - and he was very specific in his answers to me- as were his staff- (all of which I have known quite well for 6 years)- that he is encouraged by the improvements in roughly 50% of his patients- but that this is not to be confused as a cure.
The reason I add this information is not to dispute anyone's account - I am inspired by what Cindy has experienced- and hope to achieve the same- but I want people to know that Dr. Enlander as far this week is concerned was not promising cures and actively playing down unrealistic hopes.
Could he have had a change of heart? Possibly.
But before anyone concludes that a Dr. as esteemed as Enlander in this field is proclaiming cures you might want to contact him- or schedule a visit - and ask him yourself.
Lastly, my point is not to dampen hopes. To the contrary- I think there is much to be hopeful about.
But I think cautious optimism is a healthy way to approach new treatments.
Please feel free to believe or disregard anything I have said- but know that it is meant with the best intentions- and I would have felt guilty not saying it.
This is amazing to hear Sushi. I heard recently from the doctor in NZ who is facilitating GcMAF, that he doesn't see the need to run the nagalase tests any more before recommending GcMAF.
So it seems the nagalase and VDR polymorphisms aren't as useful for determining usefulness of GcMAF after all.
I have to agree, i havent seen anyone with a complete recovery on GcMAF yet... although i have heard anecdotally about some who have. I'm on it for about a year and a half and have had about 30% improvement which is great but i dont expect this treatment to give me the full recovery... hopefully im wrong I will be seeing my doctor later in the week so i will be asking him similar questions!!
At this point, I think it makes sense for Dr. Enlander to chime about what his experience is with GCMAF and his patients. When he said 100% chance that I would be 100% well and not need medicine anymore, I questioned him about other patients success. I was told that he had many patients who were well and no longer needed medicine anymore. I asked the longest length of time with the illness and he said the longest was 14 years. Maybe there is a difference between the terminology "complete remission" (which I am defining as being completely well and not needing medicine anymore) and some other definition for complete remission. I did not ask about "complete remission" I asked about being 100% well and not having to take any medicine anymore. I even asked again about the not taking any medicine anymore twice and both times were told yes. These are direct quotes that were made on April 2, 2012 to me. I will ask Dr. Enlander to log into this thread and discuss his views as it would be good to hear his clinical experience with the higher doses of GCMAF from the horse's mouth.
Thank you. I think that's a good idea. You're right- it's possible we are using different terminology.
I think the word "cure" in the headline of the thread is an eye grabber.
His views on whether he believes this is the cure for CFS would be good for us to understand - in addition to any other insights he might have.
Have we ever had one of the "celebrity" ME/CFS doctors post on here before? I don't like the chances of your convincing him to post her.
What is sad on a forum is out in the open for everyone to see. It is effectively on record. What is said within his clinic is a different matter.
Yes, the shield (or illusion) of anonymity helps encourage us to be more open with our online sharing.
dr. enlander has posted on this board before, as have dr. holtorf and some others...
ronan....1 1/2 year and only 30% is defintely better than nothing but i was hoping for a lot more improvement in that amount of time! :-/
i dont think anyone can promise a cure since no one yet knows what is causing this....
with cindywillis, it might be easier for a doctor to be very optimistic since she has not been sick long at all. i am not at all surprised she has done very well.
oh well, i do feel gcmaf is a step in the right direction if nothing else, providing long term use doesnt end up causing us harm somehow..one never knows..
what i really want to know is how people's NK Cell Function has changed while on GcMAF......
I had obviously never noticed Dr Enlander's posts before. It's great that he's willing to put himself out there on this forum.
I still find it highly unlikely he would commit to saying GcMAF will give 100% improvement no this forum without first having clinical documentation to back it up. I'd say his posts on here would be very cautious indeed.
ME/CFS specialists attract more than enough unfair and undesirable attention as it is.
no no he didnt say that. i cannot remember what he posted about..it was on the main GcMAF thread...
Rsponse from Dr Lewis clinic is that they don't plan to publish his patient results.
Yes i would like to hear if nk function has improved, maybe viral titres as well??
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