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  #901  
Old January 14th, 2012, 12:01 PM
tomtomtom tomtomtom is offline
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Default Re: Yamamoto's GcMAF clinical trials

hey there,

i am so happy that my doc not only withdrew his suggestion to start HAART, but that he is also taking a second look at CD4 decline and the guts... of course, i am most interested in having this dialogue with a prof from my university clinic in cologne, also.

but here is my story on hiv: the whole process was quite straightforward. i hadn't been for a blood draw in about one year, since my lifestyle is healthy and my CD4s had always been between 500-600 at 28-30% since the beginning of my 6 years of chronic hiv infection. i thought i had nothing to worry about, but still kept checking the alternative news on different fora, and, of course, went back to the clinic in november 2011 just to have another check.

when i got my results in early december, my cells had dropped to 380 and 20% CD4/8 0.3. my viral load had already been rising via 200.000 from a year ago to 400.000. as long as my cells were not affected, my prof. told me not to worry. "who cares about viral load, when you have enough cells", he said. however, these new results were not encouraging and i asked him for another, should i say 'confirmatory' check 4 weeks later - bad word to use in this business. my new measurements are 510, 23%, CD4/8 0.4, VL 520.000 - so everything increased.

and this is on MAF 314: since i had heard about MAF 314 becoming available, i wrote a couple of mails, asking if i could be included in some mailing list with further information, got the contact of dr. santos-könig in vienna (whom you may know from the alternative aids conference videos), made an appointment, got on the plane, met her, had a long conversation and homeopathic analysis, got a remedy, the little packets of ferments, very thorough and careful instructions on how to make the yoghurt, headed back home to cologne and started preparing from dec 8th.

it is easy enogh to make, esp. if you have some experience with making kefir. you boil 2 litres of milk (i take organic, full fat) to kill all bacteria, cool it down to 40-41° C (104 - 107,6° F), add the first ferment to one liter and put it in the yoghurt maker for some hours. you add the second ferment to the 2nd liter of milk between 26-30° C (79-86°F) and let it stand there for 24 hrs. a little refrigeration, adding some colostrum and third probiotic and that's it. the actual prepration time is not a lot - you just have to wait about 48 hrs for the fermentation to finish. and ready is a batch for 7 days.

the price for one person for 6 months was EUR 1000,-, which comes down to EUR 166,- per month. that's doable and for a product which is not yet mass produced i can live with that cost. i may well save some money on not having to buy some other supplements, which apparently did not prevent my cd4s from dropping. i concentrate on the gut now.

ok - don't want to make this post too long... thanks for your constructive replies, and of course, i am happy to share any information on the subject. one joyful post of yesterday was even deleted in an hiv forum here in germany and my account was cancelled, accusing me of advertising a product - when all i offered was to share, at no cost, in the cologne region, because my batch actually is enough for 2 people... and nobody has shown any interest so far. i guess, it is simply not well known yet and there are the usual suspects trying to discourage such reports from being posted. tragically, some of these administrators might be taking HAART themselves.

lots of love,
and i am happy to write emails also,
thomas
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  #902  
Old January 14th, 2012, 04:36 PM
JeremyB37 JeremyB37 is offline
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Default Re: Yamamoto's GcMAF clinical trials

Hi Thomas

Thanks for that detailed information which is very useful.

Naturally, you would need to see ongoing results over a period of months to come to any conclusions, and differential diagnostic tests on gut function would probably tell you a lot more on what real effects MAF 314 might be having, than CD4 or the cellular debris shown in viral load.
However, I would caution on the CD4 count: they can change by over 100 in one day naturally, they can change by over 100 simply on the basis of aerobic exercise. And a change from 380 to 510 is clinically inconsequential.

On a general note, until MAF 314 and these packets are made cheaply available, the costs you describe would be totally out of the question for a very significant number of people labelled 'HIV+'. Which is unfortunate.

Best wishes.
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  #903  
Old January 14th, 2012, 07:46 PM
Hemmy Hemmy is offline
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Default Re: Yamamoto's GcMAF clinical trials

Quote:
Originally Posted by tomtomtom View Post
hey there,
Since I had heard about MAF 314 becoming available..., got the contact of Dr. santos-könig in Vienna... got a remedy, the little packets of ferments, very thorough and careful instructions on how to make the yoghurt, headed back home to Cologne and started preparing...

It is easy enogh to make, ...you boil 2 litres of milk (I take organic, full fat) to kill all bacteria, cool it down to 40-41° C (104 - 107,6° F), add the first ferment to one liter and put it in the yoghurt maker for some hours. you add the second ferment to the 2nd liter of milk between 26-30° C (79-86°F) and let it stand there for 24 hrs. a little refrigeration, adding some colostrum and third probiotic and that's it.

The price for one person for 6 months was EUR 1000,-, which comes down to EUR 166,- per month....

thomas
Thomas,
Thank you for sharing your experience with MAF314 yogurt. Do you know what organisms are in the probiotic packets? I wonder if Lactobacillus reuteri and/or Lactobacillus rhamnosus are among them. Were you told any specifics about the probiotics in the packets? We can purchase many different strains of probiotics in the US for a few dollars. And several papers have been written on yogurt helping people with inflammatory bowel disease:

Anti-inflammatory effects of probiotic yogurt in inflammatory bowel
disease patients


M. Lorea Baroja,*† P. V. Kirjavainen,*†‡ S. Hekmat§ and G. Reid*

Clinical and Experimental Immunology
doi:10.1111/j.1365-2249.2007.03434.x


Given that the yogurt is NOT lowering your viral load, it doesn't appear that your treatment is repairing your immune response. Do you feel better? Have any other symptoms changed since you started taking MAF314? How long have you been taking this yogurt? Can you specifically link the yogurt you are receiving with the product called "MAF 314"?

If it is simply a yogurt rich in Lactobacillus reuteri and Lactobacillus rhamnosus, a company called Nature's Way makes a product rich in those probiotics, called "Primadophilus Reuteri" - Superior Probiotic (multi-strain formula, 5 billion CFU, 90 Vcaps) for under $20.00

I assume that you can simply add the contents of a capsule to yogurt that has cooled down to a temperature that won't kill the organisms and above a temperature that won't slow them down.

It would be nice to hear from someone who has tried probiotics and who has been recently infected, and who is young, and who is relatively healthy (CD4+ T cells above 700 cells/mml).

[Moderator Note: A hyperlink has been added for the cited source. In the future, please include the hyperlink before posting, so readers can more easily access the source material.]

Last edited by jonathan barnett; January 14th, 2012 at 08:02 PM. Reason: Hyperlink added
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  #904  
Old January 14th, 2012, 07:53 PM
Hemmy Hemmy is offline
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Default Re: Yamamoto's GcMAF clinical trials

Quote:
Originally Posted by Hemmy View Post
Thomas,
I wonder if Lactobacillus reuteri and/or Lactobacillus rhamnosus are among them.

Anti-inflammatory effects of probiotic yogurt in inflammatory bowel disease patients

M. Lorea Baroja,*† P. V. Kirjavainen,*†‡ S. Hekmat§ and G. Reid*

Clinical and Experimental Immunology
doi:10.1111/j.1365-2249.2007.03434.x
Here's a paper on yogurt in HIV+ patients:

The potential role for probiotic yogurt for people living with HIV/AIDS


Gregor Reid

Lawson Health Research Institute; Departments of Microbiology & Immunology and Surgery; The University of Western Ontario; London, Ontario Canada

Gut Microbes 1:6, 411-414; November/December 2010; © 2010 Landes Bioscience

Note that both papers come from Canadian groups.

[Moderator Note: A hyperlink has been added for the cited source. In the future, please include the hyperlink before posting, so readers can more easily access the source material.]

Last edited by jonathan barnett; January 14th, 2012 at 08:02 PM. Reason: Hyperlink for cited source added.
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  #905  
Old January 14th, 2012, 08:15 PM
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Default Re: Yamamoto's GcMAF clinical trials

Hemmy: no one other than Ruggiero and his staff knows what is in MAF313, though many of us would like to have that information. Do you know something the rest of us do not know, or are you just trying to cast aspersions here?

You seem to be suggesting that yogurt is yogurt is yogurt. That would not be unlike suggesting that since one can purchase aspirin at any convenience store, claims that some new form of analgesic is a more powerful pain reliever must be bogus.
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  #906  
Old January 15th, 2012, 01:01 PM
tomtomtom tomtomtom is offline
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Default Re: Yamamoto's GcMAF clinical trials

@computergeek

You write: “I've been patiently waiting to hear more…” Have you also sent an email to anyone about it? If not, why wait any longer…?

@hemmy

Thx for the links. Very helpful. No idea about specific contents. Concerning surrogate markers, I agree with you that we need to get a grip on monitoring the immune status more comprehensively. Is VL related to CD4 cell decline, and if so how – causally, synchroneously, or badly…?


@JeremyB37

I respect your position to interpret my change from 380 to 510 as clinically inconsequential and I fully agree with you on the need for more long-term results. I am happy to contribute my case: same university clinic, similar blood draw times of the day (usually around 11.00 a.m. on a Thursday) for a good dozen of measurements over more than 5 years.

After a few erratic bumps, in Dec 2011, for the first time, both % and total CD4 lower than ever – and VL higher. So my doc said: “That fits the theory quite nicely.” “What fits and what doesn’t?” I could hear myself say. If the CD4 count is the ticket to HAART, anything pushing CD4s is sufficient. The recent 130+ in 4 weeks plus 3% plus CD4/8 is unprecedented in my infection history.

“I will have to put you on a study” my prof said. No need, I replied, but I would like to give it 6 weeks’ time and another blood draw, to see, if this proved to be a stable trend. But he pressed me to tell him what I had done differently…

Thanks for the suggestion of diagnostics on intestinal function – no prob. Imagine my asking the doc for that  funny. Or nagalase – see Yamamoto. Definitely looking into this. I am glad my doc appreciated the potential role of the gut at all – he even wrote his PhD thesis on that theory, he said.

Last but not least: “the costs you describe would be totally out of the question for a very significant number of people labeled HIV+. Which is unfortunate.” I could not agree more – and HAART is much more expensive even, just happens to be covered by health insurance. Now, how much more unfortunate is that? You know that I offered to share a portion of MAF 3 14 for free in the Cologne area in a German forum, don’t you? I was venomously attacked and finally kicked out without justification of any sort. Everyone who needs more CD4s to save them from medication should get this, free of cost, full stop. What if we had places producing the yoghurt and provide it to those who do not wish to put up with a messy kitchen? And what feels best to me: it is so non-toxic… 

So from my perspective, the best clinical consequence of this trial was my doc sparing me the onset of HAART! Things are looking bright!

Lots of love and thanks for your patience – it means the world to me!
Thomas

Last edited by jonathan barnett; January 15th, 2012 at 01:52 PM.
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  #907  
Old January 15th, 2012, 03:59 PM
JeremyB37 JeremyB37 is offline
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Default Re: Yamamoto's GcMAF clinical trials

Quote:
Originally Posted by tomtomtom View Post
@JeremyB37

I respect your position to interpret my change from 380 to 510 as clinically inconsequential and I fully agree with you on the need for more long-term results. I am happy to contribute my case: same university clinic, similar blood draw times of the day (usually around 11.00 a.m. on a Thursday) for a good dozen of measurements over more than 5 years.

After a few erratic bumps, in Dec 2011, for the first time, both % and total CD4 lower than ever – and VL higher. So my doc said: “That fits the theory quite nicely.” “What fits and what doesn’t?” I could hear myself say. If the CD4 count is the ticket to HAART, anything pushing CD4s is sufficient. The recent 130+ in 4 weeks plus 3% plus CD4/8 is unprecedented in my infection history.

“I will have to put you on a study” my prof said. No need, I replied, but I would like to give it 6 weeks’ time and another blood draw, to see, if this proved to be a stable trend. But he pressed me to tell him what I had done differently…

Thanks for the suggestion of diagnostics on intestinal function – no prob. Imagine my asking the doc for that  funny. Or nagalase – see Yamamoto. Definitely looking into this. I am glad my doc appreciated the potential role of the gut at all – he even wrote his PhD thesis on that theory, he said.

Last but not least: “the costs you describe would be totally out of the question for a very significant number of people labeled HIV+. Which is unfortunate.” I could not agree more – and HAART is much more expensive even, just happens to be covered by health insurance. Now, how much more unfortunate is that? You know that I offered to share a portion of MAF 3 14 for free in the Cologne area in a German forum, don’t you? I was venomously attacked and finally kicked out without justification of any sort. Everyone who needs more CD4s to save them from medication should get this, free of cost, full stop. What if we had places producing the yoghurt and provide it to those who do not wish to put up with a messy kitchen? And what feels best to me: it is so non-toxic… 

So from my perspective, the best clinical consequence of this trial was my doc sparing me the onset of HAART! Things are looking bright!

Lots of love and thanks for your patience – it means the world to me!
Thomas
Hi Thomas

Thanks for that detailed and considered reply.

I absolutely agree with you about what you are potentially seeing, and if that continues then it is truly noteworthy.
I think I was just adding a note of caution since, in the world of 'HIV'/AIDS, many are disappointed by ultimately unsuccessful 'cures', and it is always crucial to see consistent results.
However, I think you do have cause for optimism because there have been multiple orthodox RCTs (proper clinical trials) showing the real benefits of probiotics and prebiotics. We sometimes forget that the two are crucial, and MAF 314 is, from my reading of Ruggiero's work, a compound that does include prebiotics. And it accords with the very real success of the BITE trials in 2008-2010 among asymptomatic 'HIV+' people recruited via 'HIV' clinics, and showed significant CD4 benefit to the probiotic and prebiotic formulation that was trialled. Unfortunately, and controversially (even in the eyes of many 'HIV' doctors!) the trial was stopped early, and has not been heard about again despite such good results! Who knows what influence BigPharma had on that since the BITE trial had clear conclusions - massive loss of money for anti-HIV drugs not being taken because the formulation seemed to halt the decline in CD4s and even enhance them, so delaying (or stopping!) the point when they could say 'go on drugs!'.

As for the cost of MAF 314, I agree with you, it is probably (even at the high cost you paid) about 1/8th of the cost of anti-HIV drugs, but as you say the orthodoxy is happy to spend $1500/Euro1000 a month on toxic drugs but not $225/Euro166 on MAF 314!
So if a person is left to pay it out of their own pocket it becomes academic because, since people labelled 'HIV+' are 3-5 times more likely to be unemployed than the population at large, even Euro50 a month would be pie-in-the-sky for many.
At a time when in Greece you have the shocking example of childrens' homes, nurseries and social service departments having CHILDREN left anonymously, because their parents cannot afford to feed them, in Romania where the health service is literally collapsing with a level of spending lower than anywhere else in Europe, and in Spain unemployment now greater than 1 in 5 of every able-bodied adult aged 18-60, poverty makes many individuals paying for MAF 314 an impossibility.

Best wishes
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  #908  
Old January 16th, 2012, 12:19 PM
tomtomtom tomtomtom is offline
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Default Re: Yamamoto's GcMAF clinical trials

@ Hemmy: on the contents, I found the following on p. 21/25 in the booklet which came with my MAF 3 14 kit. It is, of course, still a little unspecific on contents: cow’s milk, cow’s milk derivatives , bacteria, milk enzymes, yeasts. Plus, you add 125 ml colostrum, because it contains more Gcproteins than milk.

It also gives very careful instructions on the process, and “best before” info (8 days). The kit contains 3 packets of component #1, 3 of component #2, and a tube of a probiotic #3. Came in a lovely box The yoghurt you make initially from the dry ferments takes about 6 hours longer than in the following weeks, when you culture from fresh yoghurt. That’s the only difference. Each generation can live for 10 weeks. Then you start with new packets. If there were a stylish flowchart or mindmap of the process, it would be even easier to just walk along.

It is a somewhat more high-maintenance process than taking a pill or two a day. I have relative flexibility in my job, so I can sometimes schedule 30 min for attending to my yoghurt. Given that I had a couple of 5 day trips away from home during the last 4 weeks – plus New Year’s Eve, I have managed well and not missed a day. Some logistical optimisations and you can plan it very well, even with a full job - i.e. weekends. Would still be nice, if I could just get it in the supermarket

Lots of love,
thomas

[Moderator Note: Duplicate post deleted. No problem, Thomas.]

Last edited by jonathan barnett; January 16th, 2012 at 12:58 PM. Reason: double posting - sorry, just getting familiar with this...
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Old January 16th, 2012, 01:05 PM
tomtomtom tomtomtom is offline
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Default Re: Yamamoto's GcMAF clinical trials

@ JeremyB37:

All of us have reason for optimism! And we have seen and learned too much in this daily business, than to forget about our virtues. I share your caution. This is my reason for not using the word “cure” which is linked to the puzzling definition of AIDS:
1) formally: the definition has been very changeable (see added indicator diseases and CD4 count), as well as “sticky” – once you have AIDS (e.g. under 200 CD4s) you have it forever. At least this is what I gathered. Please correct me, if I am mistaken.
2) informally: there is extensive use of the acronym “AIDS” without specifying the clear and distinct underlying causes of illness (e.g. in Africa, India, China…). Particularly the semantic fusion into “HIV/AIDS” is a brilliant invention to blur the boundaries, in effect making the two acronyms almost identical in everyday language. Lots of symbolism, lack of clarity, little useful.

Thanks also for bringing in prebiotics. Excellent point. I only came across this issue, when I got some special orthomolecular vitamin combo with additional prebiotics – never heard of it before. I found out that they contained inuline, made from chicoree root, but also an artificial sweetener (saccharine), so I discontinued after two days. One of the posts described the neutralizing effect of aspartame on MAF 3 14, so I quit all other sweeteners, too. But where did you read that MAF 3 14 contains prebiotics? All I do is reculture a small amount of ready-made yoghurt with freshly boiled milk every week.

But being on supplements: the BITE trial says little on dosage but Danone et al. supplemented ACC, pre- and probiotics. That’s it. So I took an additional 3 x 600 mg of ACC, my prebiotics, and bifido and LA yoghurts from the supermarket, and of course MAF 3 14. I also added wheat bran, kefir and bananas to my whole-grain muesli and there are loads of very nice recipes on the net (e.g. raw leeks with apple and a creamy dressing – harsh but yummy) and so on… All natural. Get in touch, if you have more good stuff, because I am a researcher, not a cook One specialty, maybe: I took 4.000 IU vitamin D3 per day, as the Vitamin-D-Binding-Receptor is crucially involved in the macrophage activation process in the lining of the guts and the throat. I remember that being explained somewhere. Otherwise, nothing else. Just good living! ~most of the time~

On the other orthodox studies you mention, could you please post a link? I am starting to collect some stuff on all of this. Contributions welcome! Also, there are a few episodes of a video blog… which I have started before my good results… but not yet dared to release…

Jeremy, I feel we are in tune on the issue of cost. Now, I am a political scientist by training, and ethics is a big part of any theory of justice and that of a state. So yes, all these issues you mention are deeply painful. In other cases, though, people do not have the energy to simply try it out. Before we confront these challenges full-on, let us consider our next small steps.

Lots of love,
thomas
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Old January 16th, 2012, 01:49 PM
Hemmy Hemmy is offline
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Default Re: Yamamoto's GcMAF clinical trials

Quote:
Originally Posted by tomtomtom View Post
@ Hemmy: on the contents, I found the following on p. 21/25 in the booklet which came with my MAF 314 kit. <snip> Plus, you add 125 ml colostrum, because it contains more Gcproteins than milk.
<snip>
Lots of love,
thomas
Thomas,
Thanks. Now I understand that the product you have is claiming to be 'MAF 314'.

Does the literature state the manufacturer of 'MAF 314'? I wonder where it is made and who makes it. I wonder how many (different) versions of 'MAF 314' are being sold.

Note that the Canadian groups (see above links to papers) are claiming that good things come from a non-'MAF 314' product(s). And note that they specify (what I assume is) two off-the-shelf probiotics - which are not in many common commercial yogurts sold in the US.

I wonder if the key to 'MAF 314' is adding colostrum before fermentation to boost production of GcMAF.

http://en.wikipedia.org/wiki/Colostrum

I wonder if there are any keifr grains in the packets

http://dwb.unl.edu/Teacher/NSF/C11/C...net/kefir2.htm
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