Guest guest Posted February 7, 2000 Report Share Posted February 7, 2000 Steve, you asked about the study I mentioned in an earlier post in which patients who tested positive for HHV6, Mycoplasma, and/or Chlamydia took undenatured whey for six months and then tested negative. As for as I know there are no plans to publish the study. It was a very small one conducted by Dr. Cheney. I actually first read about it here on this list. Sue graciously posted the transcripts of a presentation and a workshop that Cheney gave a year ago in Florida. I'll quote the relevant sections below. There should be more data in a few months, since the current ImmunoPro study includes testing for the critters before beginning the whey. If a patient is positive, they will of course be tested after treatment. Quote from Cheney presentation February 1999: .. . . immune-activation states can also induce the activation of endogenous microbes in the presence of glutathione deficiency. And that might explain why in this immune-activation state that we call Chronic Fatigue Syndrome you see a lot of endogenous viral activation such as EBV, CMV, HHV6, mycoplasma incognitus, chlamydia pneumonia, candida, and on and on and on. You see the activation of this microbial ecology, and why is this happening? It could be that it happens because cytokines in excess stimulate these organisms, especially in the presence of glutathione deficiency. The converse is true, however. In the presence of good glutathione levels, it's very difficult for that to happen. .. . . Conclusions from all of this are: Glutathione has potent anti-viral properties--if you raise the glutathione level you can stop the replication of most any, at least, intracellular pathogen. Chronic fatigue syndrome patients are glutathione deficient. Glutathione deficiency itself has a potent pro-viral effect. That is, not only does (high?) glutathione levels tend to act as an anti-viral, but glutathione deficiency produces a pro-viral effect. It can actually augment viral replication. Augment it from the case of toxins, toxins could augment viral replication and also cytokines themselves. So immune-activation states would itself augment these things. .. . . I'm trying to set the stage for how important it is to address this glutathione defect. It could be THE major issue in this illness. Maybe not so much in the beginning, but over time become the major issue. Because we're dealing with a sub-group of people who have cellular detox failure and all that that causes. Because if you have cell detox failure, you become a canary to your environment. . . . If you get a glutathione defect, then you become vulnerable to your own cell toxicity, specifically the portal circulation. We found out that when you give oral reduced glutathione, it helps a little bit in some people, especially these pressure toxic headaches they get. But when you keep raising the dose, they actually get sick again, and it was never a very impressive response. When we tried NAC we saw some evidence of toxcicity. In the use of NAC--I'm concerned about high-dose NAC in this disease. I think it may be toxic. We tried other methods to affect glutathione. Nothing seemed to be working. Then we got wind of . . . undenatured whey protein, lightly denatured to preserve the peptide action of this milk protein. It's concentrated to about 90 percent protein and it's very, very lightly denatured. In fact, the more lightly they denature it, the better the action appears to be. And the more they denature it, the less active it appears to be. In fact, if you denature it completely, down to its constituent amino acids, it really doesn't work well at all. People who normally have milk protein allergy seem to tolerate this, by and large. Not 100 percent, but by and large. This is the data from a six month study. There were eight people entered into the study, seven of them completed the study. We got data on seven of them. One dropped out at three months for a reason involved with the design of the study. (Note from Carol: the patient dropped out when the study protocol randomly required half of the participants to drop to one packet a day at the half-way point. He was improving so much on two packets a day that he refused to drop back, so he quit the study.) The first three months of the study we treated with two packets a day, and then the second three months, half were randomized to two packets a day and half were randomized to one packet a day. We wanted to see if you could tell a difference clinically or by other means between one packet a day versus two packets a day. We did this because there was some indication that the more you treat with this, the higher the dose, the better the effect. When you look at the group that goes from two packs a day to one pack a day, you can see this nice dip where they started going back up (in their urine lipid peroxides). Suggesting that one pack a day doesn't work very well. (He's referring to a slide of a chart here, I think.) By the way, you can extend this--there are people, I've discovered since the study was done, that do really well on three packs a day and not very well at all on two. (Note from Carol: Cheney told me in October that he has patients on 4, 5, and even 6 packets a day!!!) So clearly there is a dose response issue. Two packs a day would probably be my recommended starting dose, but I wouldn't hesitate to go up if it seemed like it wasn't working. This is the exciting stuff. We wanted to see not only if this product improved glutathione functionality, which it did, but we also wanted to see if it knocked out micro-organisms, like the PNS article said it would. Chlamydia pneumoniae is an intracellular pathogen. It's a common cause of hospital-acquired pneumonia. It ubiquitously infects the population, but seems to activate under certain conditions. And if it activates, some of the clinical conditions of this organism are chronic sinusitis, pharyngitis, and laryngitis. But it also gets into the central nervous system. In a study published by a neurologist out of Vanderbilt showed that chlyamdia pneumoniae may be a very important pathogen in multiple sclerosis. Indeed, data they shared with me recently (and this is coming to publication soon) showed that 80 percent of the cerebral spinal fluid of MS patients is actively infected with this organism. Versus 15 percent of other neurological diseases that are not MS. In a journal-published article on neurology, aggressive treatment for chlyamdia pneumoniae rapidly reversed an acute exacerbation of multiple sclerosis. So we measured IgM levels for this pathogen at Vanderbilt. Most laboratory measurements of this organism are not very good, so this is a research grade assessment, and probably may not generalize to the run-of-the-mill types of tests that you might get in your local labs. But IgM elevations of 1 to 1600 (?) dilutions is evident of significant active infection with this organism. Six months later, it just wiped it out. IgM just fell to normal levels. It didn't really matter whether you were taking one pack a day or two packs a day. Just wiped it out. Makes you wonder what this might do for MS. Think about that. We also looked at mycoplasma fermentans and mycoplasma penetrans. Both of these pathogens have been linked to Gulf War Syndrome. They've been linked to chronic fatigue syndrome. Again, they may be a relatively ubiquitous mycoplasma species, intracellular, and can cause a variety of problems when active. Again, by PCR done in Irvine, California. We were able to show that this product also wiped out mycoplasma incognitus and penetrans. Then we looked at HHV6. It was a little mixed here. We tested three people. By the way, this study was designed to do some microbial testing on everybody, but not everything on everybody. The patients were allowed to pick and choose depending on what we had in their chart before. We weren't able to do everything on everybody because they were paying for this. We did HHV6 rapid culture testing, which is a technique developed by a company in Wisconsin. This particular culture technique uses an intermediate (captures fiberglass?) cell line, so that you are positive only if you are really infected, so it reduces false positives to zero. That is, under these conditions, all normal people are negative. You have to do that because HHV, both A and B strains, are relatively ubiquitous. Under these conditions, we had two positives and one negative at beginning of the study. The person on two packs a day went to zero culture (negative); the person on one pack a day stayed positive. The person that was negative stayed negative. Suggesting that maybe this isn't as good against viruses as it is against bacteria, but at two packs a day it might be good against viruses. Again, the numbers (of participants) are small. But to me, the satisfaction of this is tremendous because I'm always faced in this disease population--well, are they sick from EBV? or are they sick from HHV6? or are they sick from mycoplasma incognitus? or are they sick from c pneumoniae? And the [traditional] treatment for mycoplasma and c pneumoniae is 18 months of triple drug antibiotic therapy. And if we're wrong on this issue, we've wiped out their gut flora and leave them a gut ecology cripple for the rest of their lives. So now what we have is a nice way to address almost any micro-organism that happens to be there. Just as the PNS article suggested. (Cheney is referencing a paper mentioned earlier in the presentation. He said " To me, this is a most extraordinary paper, published by Falci, an expert and head of NIAID and our leader in the HIV world at NIH. But he's also a glutathione expert. And he showed in this paper, published in PNS in 1991, that glutathione is an impressive anti-viral weapon. You can flat-line HIV growth simply by raising glutathione in-vitro in the cell culture. " I don't know what journal PNS is.) If anyone is interested in the full transcript of the presentation and workshop, I can easily send them out as email attachments. My virus scan is up to date - I promise! :-) Take care. Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 Thanks, I've added to website http://www.folkarts.com/idef/cheney_whey.htm (assuming no problems doing so - as usual with Cheney's stuff) Ken Lassesen 2 @ 2 ft PWC, 2 @ 4ft PWC 2 ft PWC: http://www.folkarts.com/idef/ 4 ft PWC: http://corgi.folkarts.com/ Fax: (520) 832-6836 ICQ #: 2122097 (Netmeeting too) Study on whey and HHV6, Myco, and Chalmydia P. Fr Quote from Cheney presentation February 1999: . . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 Sheri, I would suggest that you print out for your doctor the physician's section and the explanation of how the rapid culture test works (two different sections of website) from www.hhv6.com (Or have him go there to read it if you don't have a printer) Wisconsin Viral Research Group is a highly respected laboratory. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 Hello Carol, I am so grateful you posted this. I'd read it and being trying for months to re-find it! I would LOVE to have the full article for myself and to take it to my doc who has problems believing any HHV6 test could ever be accurate.... Thank you so much, Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 Dear ITP: I just joined the group. Any chance of updating me on the stuff below? Inthepresent@... wrote: > From: Inthepresent@... > > Sheri, I would suggest that you print out for your doctor the physician's > section and the explanation of how the rapid culture test works (two > different sections of website) from www.hhv6.com (Or have him go there to > read it if you don't have a printer) Wisconsin Viral Research Group is a > highly respected laboratory. > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2000 Report Share Posted February 8, 2000 Hi Kathleen! Wisconsin Viral Research (not sure if that's exact name but it's close) does testing for ACTIVE hhv6 infection, which is found in approximately 0% of the general population but is found in a significant percentage of people with cfids, m.s. and aids. Sheri was asking for info for her doctor on the ability to definitively test for the presence of an active hhv6 infection. I think he probably had expressed skepticism because hhv6 is so common that most people will test positive for the ANTIBODIES to hhv6, indicating that at some point in their lives they have been exposed to hhv6. This test for the ANTIGEN, i.e., the actual virus, not antibodies to it, is relatively new. I think the Wisconsin people are actually the ones who developed this rapid culture test. They are a reputable outfit, not flaky in the least. Hope this is helpful! (aka " ITP " !) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2000 Report Share Posted February 9, 2000 Hi , It's unfortunate they do not accept Medicare, the test is expensivie. I have emailed them for an update to see if they now accept Medicare. Al Re: Study on whey and HHV6, Myco, and Chalmydia P. > From: Inthepresent@... > > Hi Kathleen! Wisconsin Viral Research (not sure if that's exact name but > it's close) does testing for ACTIVE hhv6 infection, which is found in > approximately 0% of the general population but is found in a significant > percentage of people with cfids, m.s. and aids. Sheri was asking for info > for her doctor on the ability to definitively test for the presence of an > active hhv6 infection. I think he probably had expressed skepticism because > hhv6 is so common that most people will test positive for the ANTIBODIES to > hhv6, indicating that at some point in their lives they have been exposed to > hhv6. This test for the ANTIGEN, i.e., the actual virus, not antibodies to > it, is relatively new. I think the Wisconsin people are actually the ones > who developed this rapid culture test. They are a reputable outfit, not > flaky in the least. Hope this is helpful! (aka " ITP " !) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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