Updated Protocol

Ever since the news of XMRV broke I have been doing a lot of research and have been anxiously gobbling up every bit of new information that comes out. The possibility of being infected with a retrovirus, a retrovirus closely related to the murine leukemia viruses used in research and distantly related to HIV, has given a new direction to my endeavor. I've found a lot of interesting information by looking at research done on HIV, AIDS, and murine retroviruses.

There are a lot of similarities between HIV/AIDS and CFS...in fact the first comparisons were drawn twenty years ago when AIDS clinician Dr. Nancy Klimas called CFS "a form of acquired immunodeficiency." Around that time Dr. Anthony Komaroff said it was an "immunologically mediated" disease, characterized by inflammation of the central nervous system. We've found many immune abnormalities in CFS over the decades: high and abnormal forms of RNAse-L, cytokine shift to a Th2 or humoral immunity pattern (as opposed to Th1 or cellular immunity), low natural killer cell functionality and number, high oxidative stress, depleted glutathione, changes in hormones, and many other things.

Likewise, as HIV progresses to AIDS, there is a shift to Th2 immunity, a depletion of glutathione, hormone changes, etc. When AIDS patients are administered glutathione directly, it does no good because it just ends up as oxidized glutathione. Dr. Cheney has seen this exact phenomenon with CFS. There have been trials in HIV patients of n-acetyl-cysteine and l-cystine, which are precursors of glutathione, with mixed results. Recently Dr. Judy Mikovits at the Whittemore Peterson Institue said in a lecture and Q&A sessions sponsored by ProHealth that n-acetyl-cysteine could possibly help CFS patients. It is a precursor to glutathione and is a much better way to raise glutathione than administering it directly. Since glutathione is the body's endogenous antioxidant, it could help with oxidative stress, but it is also one of the most important factors determining whether a naive T-helper cell will turn into Th1 or Th2 cell. Higher glutathione leads to Th1 immunity and lower glutathione will shift it toward Th2.

I had been contemplating it for many months, and finally decided to begin a modest dose of n-acetyl-cysteine. Various internet sources suggest taking it with at least twice as much Vitamin C. Too much Vitamin C gives me insomnia, so I am taking no more than 1g per day.

Additionally during the ProHealth lecture, Dr. Mikovits also suggested supplements that raise natural killer cell function, stating that some have been through Phase I (safety) clinical trials. She didn't name any supplements in particular, but I believe she was talking about AHCC, which is a proprietary Japanese formula and a source of alpha and beta glucans which has been through a Phase I and has been shown to increase NK function. The funny thing is that about three weeks before the XMRV paper was published I had already decided to to try it, but as soon as the news came out I was worried that it might be stimulating the immune system in the wrong way, maybe letting more cells become the target for infection. The fact that Dr. Mikovits mentioned it makes me a little more comfortable with it, and another factor that makes me more comfortable taking a product like this is that XMRV has been reported to be present in very low numbers; not that many cells are infected. So it's not like all your NK cells are infected and as soon as you make a new one it becomes infected too. Maybe the worst that could happen is that you'd end up with both more healthy and more infected NK cells in the same ratio, the end result being a wash (I'm just a layman and could be wrong of course). I think it can only help though, because it also increases the effectiveness (cytotoxicity, or killing ability) of those killer cells.

I'm combining the AHCC with NOW Beta Glucan--which may seem redundant, but I'm taking half the maximum recommended dose of AHCC. Since the two have completely different manufacturing processes and are slightly different in their constituents, I will get the benefits of both. By the way, AHCC and Beta Glucan not only activate NK cells but also activate macrophages and can increase the production of your own hematopoietic stem cells in the bone marrow. This is interesting me since Dr. Paul Cheney recently reported two 100% remissions out of 13 patients using stem cell transfusions--I believe hematopoietic stem cells.

So these three things--NAC, AHCC, and Beta Glucan (with Vitamin C) are the major things I'm adding to my protocol. Here is what I am on as of now:

• Olive Leaf Extract, enough for about 450mg oleuropein every 6 hours (4x/day)


• Phyllanthus Niruri, 4g every 12 hours (in hot water for at least 30 minutes, strained with a coffee filter)


• AHCC, 500mg, three times per day


• NOW Beta Glucan, 500mg, three times per day


• N-Acetyl-Cysteine, 600mg, in the morning


• Vitamin C, about 750mg in the morning and 250mg in the evening


• Probiotic, 8 to 16 billion units, twice a day (after olive leaf but before eating)


• Chlorella, 1g, twice per day with meals


• Curcumin and/or Jarrow blend of Ginger and Garlic, dose varies, twice per day with meals


• Magnesium Malate, dose and time varies


• Zinc and Copper, dose varies


• Selenium, 100 micrograms


• ImmunoPro nondenatured whey, 1 scoop, once per day at night


• Occasionally 150 to 300 micrograms melatonin and/or valerian root at night for sleep


• Isoprinosine, alternating between 6 and 2 tablets per day, none on the weekends, 8 weeks on and 4 weeks off
  

Note that I'm not using the homemade isoprinosine substitute anymore as I experienced some insomnia and sleep issues with it, whereas the real mccoy seems to have no side effects. I've considered echinacea which has also been shown to boost natural killer activity, but it's very controversial. Many sources claim HIV patients should NOT take it, although the cynic in me wonders if this could be misinformation put out by drug companies protecting their profits. A component of echinacea, chicoric (or cichoric) acid inhibits retroviruses, but you would have to take quite large amounts of echinacea to get a decent amount of cichoric acid. I wish there was better information on this--it's cheap as dirt--but I'm too nervous to try it at the moment. Other things I would like to add soon are Vitamin E (as mixed tocopherols and tocotrienals) as an antioxidant and to help shift back to Th1 immunity, as well as a small amount of extra Vitamin A/beta carotene. Zinc is also very important for Th1 immunity so I am taking about 25-30mg, sometimes even 40mg, up from about 15mg. I'm male and apparently we need extra Zinc anyway.

My lack of progress over the past year has been frustrating and I am thinking about starting Valtrex in a couple of months. I hope I see some results soon. I'm hoping that the combination of antivirals (olive leaf, phyllanthus, and maybe Valtrex in the future) along with immune modulators (AHCC/beta glucan, isoprinosine, glutathione precursors, and the particular vitamins and minerals I mentioned) will do the trick. To my knowledge many people try one or the other but not that many have combined them. About a year before the XMRV news, I heard a lecture from Dr. Klimas where she talked about the immune and cytokine abnormalities she sees are consistent with chronic viral infection and suggested that trials should be done with immune modulator and antivirals used together. I guess the antivirals can only do so much if your immune system isn't killing anything, and immune modulators can only do so much if your virus infections are replicating too much for the immune system to keep up, so it makes sense to combine the two treatment approaches.