GcMAF Australia,
My experience of MAF314 was that I didn't need to start low or slow. If I had taken 10-20 mls of MAF314 it's possible that it would not be helping me or would have taken an incredibly long time to show any results. The advice may be good for his patients and for some people using MAF878 but I wonder how many MAF314 people (not patients of Dr Lewis) would agree with you.
There wasn't much of a sign either of MAF314 working "at the site of the problem" unless my entire problem was in the glands and the tonsil area. The immune activation that occurred for me was I think if the tonsillar ring and looked like a diagram that I found on the internet.
http://en.wikipedia.org/wiki/Waldeyer's_tonsillar_ring
i found an old talk or paper of Dr Ruggierio's where he talks about I think macrophage activation from that area.
Dr Lewis must be making a potent MAF314 if his patients can tolerate only a small amount. It may be that your advice is only for his patients but we don't have enough people posting here to know if all MAF314's need to be taken in small dose. The dose you mentioned is smaller than any other MAF314 produced using the Ruggerio method that I know including his own trials.
With MAF878 there is one patient taking a toothpick portion but I have noticed little good effects on my health on the full dose. There is no consistency here.
If people take a small dose of the MAF314 it's possible that they won't see any results - apart from the patients of Dr Lewis that is.
Did you see this re dr R, don't know too much but it is interesting,
Professor Marco Ruggiero was at the Riordan Clinic in Wichita, KS on October 6, 2012, giving a lecture on MAF 314. MAF 314 is the super -probiotic substance that he and his colleagues developed at the University of Florence. Chief amongst his collaborators is Professor Stephania Pacini. Professors Ruggiero and Pacini were in North Carolina in August 2011 doing a small pilot study of MAF 314 at the Cheney Clinic, using Dr. Paul Cheney's patients as test subjects. This one-month study was presented by Dr. Cheney at the 2011 Ottawa IACFSME conference.
We welcome being able to hear Professor Ruggiero speak again on the subject of MAF 314. Unfortunately the conditions of this interview were not perfect, but there is important information here. We look forward to viewing his lecture. The video interview is by Jonathan Barnett. We thank him for this. Currently Professor Ruggiero is working with doctors in Vienna and Australia, and presumably now with clinicians at the Riordan Clinic in Wichita, KS. All are supervising the use of MAF 314 in their patient populations. Information is slowly coming in on the efficacy and benefit of this complex probiotic substance.
I am the patient advocate for my daughter. My patient has been taking MAF 314 for one year now. I myself make the formula for her, using the strict guidelines. Over this year, my daughter has "strengthened". While this term is a bit vague and subjective, it best describes her improvement. Other patients taking MAF 314 report the same response, using the same term. Some further relate that MAF 314 improves their sleep. Dr. Cheney reported in his four-week study that 70% showed improvement in two of seven symptom categories.
Of course, four weeks is a ridiculously short period to time to indicate anything in a study, particularly a positive benefit to the function of the immune system in the gut. Indications are that MAF 314 works slowly and can take some months to show improvement. Dr. Kenny De Meirleir says that it takes months, and up to a year, to restore gut function.
My patient began to show slow, steady improvement on MAF 314 in two to three months - again this general strengthening. This strengthening has continued now for an additional ten months. As usual there have been a few ups and downs.
Professor Ruggiero mentions the question of dosing. The initial dose of MAF 314 was determined to be four ounces a day. I imagine this was the best guess of the inventors, subject to revision with further clinical use. My patient started at one tablespoon and built slowly. Many ME/CFS patients need to start anything at a lower dosage. Most ME/CFS patients that I know doing MAF 314 follow this course - as MAF 314 is a powerful item. Four ounces proved itself to be too much for my patient and in time, we modulated to two ounces per day. This dosage level proved to be efficacious and produced no herx reaction.
MAF 314 should be taken with a meal, preferably a protein, some salad and olive oil. This helps get the active ingredients into the gut. Professor Ruggiero explains this more in another interview, filmed by Peter Cairns in Florence earlier this year.
Generally MAF 314 should be taken under a doctor's guidance. The information provided here is not intended to be used as medical advice. However, some patients have a problem in that they have no compliant doctor and very few doctors are hip to immune boosting probiotic substances like MAF 314.
So what to do?
The use of MAF 314 can be tracked by a Nagalase test at Vitamin Diagnostics. Dr. Tapan Audhya, a friend of the late, great Rich van Konynenburg, runs this test at his lab. Nagalase is elevated in ME/CFS patients, in addition to other illness (cancer, HIV, Autism). MAF 314, producing natural GcMAF, lowers Nagalase. Nagalase is seen as the bad boy. Lower the bad boy and the immune system has a better chance of being rejuvenated. That is the theory. No testing has been done on MAF 314, although studies are now being performed by David Noakes of First Immune GCMAF on chemical GcMAF. And of course there are the original studies of GcMAF by NobutoYamamoto here in Philadelphia at the Socrates Institute.
My patient had a baseline Nagalase of 2.2. The normal range of Nagalase is <.95. (2.2 is about average for a ME/CFS patient.) Three months after starting MAF 314, the number dropped to 1.7. Three months later it was 1.1. At this point the dosage was dropped to one ounce per day. Three months later the number was .76. At the moment my patient continues on a maintenance dose of one ounce. No one knows at the moment what to do when Nagalase gets into the normal range, or if a maintenance dosage is necessary.
My patient wears a Fitbit pedometer. Her average steps in May 2012 were 1800 a day. In September 2012 the number was 3200 and she could climb a set of stairs. This is what is meant by "strengthening". Additionally her ability to sit and stand for longer periods improved. Orthostatic intolerance diminished. Post Exertional Malaise (PEM) diminished.
Various tests followed suit. Baseline 1,25 dyhydroxy vitamin D was 90. In a few months it came down to 48 and recently it was 24.
c4a dropped from 15,000 to half of that.
MMP-9 dropped from 1325 to 272.
NK cell functional assay (LU30) went from 17 to 34.
Next up will be a cd57 test from LabCorp (note: CD57 went from 45 to 66)- and a Metagenomics stool test from Redlabs BE. Rich van Konynenburg speculated that glutathione will come up with MAF 314 treatment. Perhaps he will prove to be right in this. Let's hope so.
Professor Ruggiero mentioned in this interview the work of Dr. Gregor Reid and his team in London, Ontario. Dr. Reid first used a MAF-like probiotic in Tanzania to raise cd4 counts in HIV positive women. That study can be found here. A more recent study, published in early September 2012, seems to parallel in many ways the work of Professors Ruggiero and Pacini. Hopefully they can get together and really move this along.
Professor Ruggiero speaks of another MAF-like product MAF 878, used by Dr. Derek Enlander. More about MAF 878 can be read here.
The long-term benefits of MAF 314 are unknown. Time will tell if the improvement brought by this substance can be sustained. Hopefully clinicians will track patients with appropriate testing and discover additional useful trackers. Given the benefit that this substance seems to deliver, it makes sense that further efforts be made to study MAF 314 in a clinical setting. It would be nice to see the NIH do a little work with MAF 314 (or GcMAF).
There was also a video but I don't think it has been copied over.
