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Ruggiero Speaking & Instruction For MAF 314 - Kansas October 5-6

Discussion in 'GcMAF' started by shannah, Sep 23, 2012.

  1. xrunner

    xrunner Senior Member

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    Jonathan,

    Another question somebody asked me earlier and may be relevant for those who can't take GcMAF for whatever reason.

    Dr R. often referred to probiotics in yogurt as potentially capable of naturally producing GcMAF.
    Question: for anybody with ME, what would be his best bet in terms of type of probiotics in order to get some of the immune benefits that can be obtained from GcMAF?

    And finally, how does macrophage stimulation from beta glucans differ or compare to GcMAF, can it be an alternative?
    Many thanks.
     
  2. The MAF 314 demo, scheduled for Sunday afternoon, has been canceled.
    There were no confirmed participants, and there was a sudden death in the family of the clinic's medical director, so it was canceled by the clinic.

    Ruggiero's presentation will still take place at the Cancer Symposium on Saturday afternoon, and is being videotaped and will be publicly available. I let you know where to find it once it's posted. Lectures from previous symposiums are posted on the Riordan Clinic's website here, so I assume 2012 conference videos will be accessible from that same page once they are uploaded.​
    I also have almost 2 hours of recorded discussion with him that I hope to make available as soon as I have time to edit and upload it (a week or two at most, I hope).

    Marco is very aware of the frustration among patients who want access to MAF 314, and they are working on ways to make the product more available to people in the U.S. and simpler to prepare. That's not going to happen tomorrow, or next week, but he is committed to doing what he can. I think his presentation and interview will help answer some of the questions that have been raised here. ​
     
  3. alice

    alice Senior Member

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    Jonathan, I appreciate deeply the time and effort you are putting into this project and really look forward to listening to both the presentation and your discussion with Dr. Ruggiero.
     
    ukxmrv likes this.
  4. I've posted the first of a series of segments from a nearly 2-hour interview with Dr. Ruggiero last week. I have chosen to post the segment discussing the availability (or lack thereof) of MAF 314 in the U.S. first, in deference to the interest and support shown by this group.

    Due to the poor audio quality and excessive background noise, I will be posting additional segments of the interview only after I've been able to caption the videos, which is a tedious and time-consuming task.

    I will also be posting more information on my blog (link in my profile), hopefully in the near future.

     
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  5. xrunner: Ruggiero deferred answering your specific questions to your doctor.

    Some of the things I learned at the conference, though, suggest that colostrum is an extremely important piece of the MAF 314 algorithm (to use Marco's preferred terminology). Clinicians are trained to adjust the amount of colostrum to meet the needs of individual patients. Signs of immune overactivation, for example, might result in reducing the amount of colostrum.

    Based only on my personal experience, when it comes to any medication, including so-called "natural" products, I'd suggest some caution in thinking "more is better". It can lead to undesirable consequences.

    Also, from personal experience, I once consumed a fairly significant amount of MAF 314 because I had quite a bit left over from a production cycle. Coincidentally, I had diarrhea the next morning. Can't be sure that the MAF 314 was the cause, but I've since resisted the temptation to "pig out" on the stuff. ;-)

    I'm just not qualified to address you questions C and D. I'm skeptical about the whole "immune reactivation syndrome", despite recently experiencing symptoms that would be considered "classical" IRIS. I just don't know, and was unable to get anything more specific from Ruggiero.

    BTW, Ruggiero's presentation at the IVC and Cancer Symposium was fairly detailed, and might offer some insight into some of these questions. All of the presentations were video recorded, and will be posted on Riordan's website at some point. They said it would take them a few weeks to get them all posted. I will try to remember to update this thread when that is available.

     
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  6. ukxmrv

    ukxmrv Senior Member

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    Thanks Jonathan!

    You've done a lot of work to keep us informed and that is greatly appreciated.

    I'm just (re)starting on MAF314, which another UK patient is supplying me with when they have extra. This is going well for me.
     
  7. Forebearance

    Forebearance Senior Member

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    Oh good! I'm looking forward to watching the videos.
     
  8. GcMAF Australia

    GcMAF Australia Senior Member

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    Hi
    i have information suggesting that these Maf yogurts may vary in strength.
    The colostrums can vary in strength and also people's systems also obviously vary.
    Thes yogurts could be really potent.
    there are indications that doses as low as 15 ml could be sufficient.
    The motto is -
    Start slow and start low.
    If there are problems it can take up to about one month without the MAF to settle down again.
    Hope this post helps some one.
    BEST WISHES
     
  9. alice

    alice Senior Member

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    Hi Jonathan, I finally had time to watch the video... Thanks very much for posting it. Am I understanding correctly that in about one year or so, Maf314 will probably be made available in US? Wonder if only at Riordan Clinic? I know that you are taking Maf314, but are other people in US also taking it? It sounds like Dr. Cheney may also be using it. I'm a bit confused about it all.

    I think I will have to order BGLI GcMaf again from the Netherlands and maybe things will be clarified a bit after a few more months.
     
  10. GcMAF Australia

    GcMAF Australia Senior Member

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    From Don Lewis
    • The potency of MAF 314 depends on the strength of the colostrum. (and possibly on yogurt preparation)
    • By increasing the dose may get effects greater than the dose increase. So a 50% increase may give a 3-4 fold effect
    • Every one is different in responses
    • The immune system seems to be activated at a site of problem. This may give the appearance of re activation. (Also i think there may be uncovering of hidden say bacteria, which again can look like a reactivation)
    • Resveratol is anti inflammatory which is good
     
    xrunner likes this.
  11. All eight segments of the nearly two-hour interview I had with Professor Ruggiero have now been captioned and uploaded to youtube.

    I am still waiting to see the video of his presentation on MAF 314 to the Riordan Clinic IVC and Cancer Symposium, but will post it as soon as it is available.

    Click here for the youtube playlist of the complete interview.
     
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  12. alice

    alice Senior Member

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    Jonathan,
    Any further updates on Riordon Clinic possibly selling Maf 314?
     
  13. I know they were making MAF 314 for themselves, to understand the process better, and that Dr. Ron seemed very excited about it, but I haven't heard whether they are selling it yet. I'll try to get an update and post it here.
     
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  14. GcMAF Australia

    GcMAF Australia Senior Member

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    Xrunner i am not sure if i have posted this before
    The MAF 314 can be very potent
    • Don Lewis in Melbourne found that he needed to start at 10 -20 mls, start LOW and start SLOW
    • Depends on the colostrum
    • Appears that when the GcMAF gets to work it can work at the site of the problem, this may appear as if the problem is getting worse due to this herxing
    I hope this helps
    GcMAFie
     
  15. ukxmrv

    ukxmrv Senior Member

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    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.
     
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  16. 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.
     
  17. Dr R says that MAF314 is being used in Australia. Is it Dr Lewis? Does anyone know anything about the Australian trials of it?
     
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  18. ukxmrv

    ukxmrv Senior Member

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    I've seen the blog by Chris C and been through the videos. Been in contact with a patient of Dr Lewis but don't know anything about "trials" apart from use of MAF314 by his patients.

    There are individual patients in Australia making their own MAF878 and MAF314 using the culture from Dr Enlander and Dr Santos-Konig

    Hopefully the poster called "GCMAF Australia" will be able to tell you more about Dr Lewis.
     
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  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It is Dr. Lewis, but I don't think there are formal trials. He supplies it to his patients ready-made--which is a great boon! GcMAF Australia is in touch with him.

    Sushi
     
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  20. mellster

    mellster Marco

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    You can get the MAF without supervision, in Europe at least. I think its costs are being inflated and it is made less accessible by these doctor interventions. If you are concerned you can always stay in touch with your doc and get regular testing. From my experience and what I have read it is safer than most OTC drugs. There seems to be a documented issue with Vit D 1,25 that can potentially rise, but other than that and mild inflammatory reactions I don't now about any significant side effects. It is true that colostrum is somewhat potent, but it has been taken by athletes (esp. triathletes) routinely.
     

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