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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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'Natural' antiretrovirals?

Discussion in 'XMRV Testing, Treatment and Transmission' started by dannybex, Oct 12, 2009.

  1. kurt

    kurt Senior Member

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    the hare and the tortise

    lebowski,

    I like that statement you made that to avoid doing anything is to 'do no good'. So maybe this is a problem that goes back to the basics. If a physician sees something they do not know how to treat, should they do no harm by doing nothing, because if they do that they will also 'do no good.' The only doctor who has ever significantly helped me was a 'Functional Medicine' MD, who really tried to do some good while at the same time doing no harm. He really listened to me and while he never found the cure, he both did some good and did no harm.

    The problem with many alternative therapies, even from MDs, is that they sacrifice the 'do no harm' part in order to 'do some good'. We are in a difficult position with CFS. For one thing I have noticed many PWC are type-A personalities (myself included) which means they want to 'do something always' and that does not work well with an illness like CFS.

    So what can we do? I think CFS is a race between a hare and a tortoise. Be the tortoise and you will probably live longer. We can learn to manage symptoms, change what we must in our lives to allow us to have some quality of life. Probably that means reducing some expectations but also finding something positive we can contribute to society. Get out of denial about what CFS really means, accept it and then look for therapies that are likely to 'do no harm' as jenbooks suggests, as well as 'do some good' as you suggest. I believe there ARE therapies out there that meet both of those tests. I have found just a few that seem to help me and cause no problems, such as daily Vitamin C, positive self-talk, a few simple herbals, a little low-level activity daily (anaerobic only), etc. Probably even if we all have XMRV much of this will not change, maybe we will need to exchange ideas with AIDS patients who do not tolerate drugs well, what have they found both does some good and does no harm...
  2. froufox

    froufox Senior Member

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    I dont think that the first MMS has faded out I think that he has just introduced this new one to combine with the first one, presumably if you dont get good results with the first, I dont know... I dont follow any MMS forums..

    I did try it last yr but I only took it for a few weeks as it made my head feel weird..kind of toxic and as I wasnt sure if it was due to die off or something else so I stopped taking it so like you Kurt I didnt get really get much obvious results...although I do credit it with increasing my ferritin levels which have been very low for yrs, and pretty much nothing has raised them but whilst I was on MMS it increased by 8 points. I assumed at the time that it was because it was killing off pathogens.

    Obviously people have to be careful with anything they try and do their own research.

    I think Dr Klinghardt uses MMS in his protocols.
  3. jenbooks

    jenbooks Guest

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    Yes that's true Kurt--I've learned to be a tortoise in my therapies anyway.
    I'm not sure PWC are Type A--I think Type A's who get sick with stuff like this research endlessly and are more proactive and come onto internet boards. Probably the others we don't know about.
    Froufox, Klinghardt seems all over the map to me. I am not impressed if he uses it. He also used salt/c. Having two letters after your name (M.D.) does not necessarily make you responsible.
  4. lebowski

    lebowski

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    risk gain analysis

    hi kurt ,

    yes there should be a risk gain analysis ppl must do .. and if nothing new or say unofficial or alternative therapy is tried because it contains some risk in it , no gain can be expected .. this is a situation like surrendering to the illness .. do nothing and wait , this is the point i dont like and accept .. to be cautious about anything one tries, to make a good risk gain analysis is a must of course .. i personally read something like 200 hours before starting anything about the stuff and take the quarter of the dose suggested for a few days for example .. doing nothing is not doing no harm in case of cfs , this is my opinion .. at least life is passing away and i m really annoyed being at home with zero energy to do anything .. the risk gain analys. then must change also for everyone , if one is not very upset of being fatigued that much he can take less risk but if one just waits and does nothing about his illness , this brings even a question if he is really sick or this is his life style ..

    as this is my general understanding of the cfs situation , these days the xmrv event must be added to this analysis , i personally do not try very risky things while there is a cure may be coming from the xmrv research ..
    so i postponed the heroin trial for a while :D
  5. froufox

    froufox Senior Member

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    Jenbooks, well of course being a doctor doesnt necessarily make you responsible, I never implied that and I wasnt trying to convince people to be impressed just because he uses it, I was pointing it out because you said you didnt know any practitioner that does use it. People can make of that what they will. I've never consulted Klinghardt so I cant comment on how he works on an individual basis.
  6. spit

    spit Senior Member

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    I'm delurking specifically because of this thread. To be clear, I've been reading the site for quite a while -- I'm not diagnosed with anything at the moment and have been seeing doctors for two years now without any formal diagnosis whatsoever, but my symptoms have a lot in common with CFS. I've been following news on XMRV with a lot of interest for multiple reasons, and have found y'all to be very helpful in providing updates on all sorts of related info.

    Specifically on the topic of MMS -- I don't even think you have to wade far into what I think of as the "do no harm vs. doing nothing" battle on this one, honestly. There's also, at least for me, the "does this make any theoretical sense at all?" process.

    Before I got sick, I was studying both biology and chemistry, and I can tell you that the claims of curing much of anything in vivo by ingesting chlorine dioxide makes no sense, physiologically. Just none. In water, it's a free radical, a strong oxidizing agent, and so reactive that it's frankly probably oxidizing almost whatever organic compounds it discovers in the stomach before it ever even has the chance to significantly enter the bloodstream as chlorine dioxide.

    Reaction products, probably chlorite, can probably get into the bloodstream -- but they're not specific to pathogens, they're reactive with all sorts of organic molecules. I mean, bleach kills stuff, too. We don't drink bleach as an antiviral.

    I'm not opposed to trying supplements and so forth -- I play with them too, basically because I've got nothing better to do at the moment while my doctors dick around, so I figure it's worth a shot to see if I can at least feel a little better using the herbs or whatever that are available to me. But IMO when we're talking about a chemical used industrially as a broad disinfectant and bleaching agent, and when we're being told that if we feel gross and have diarrhea after drinking it, that's because it's "working", it's good to be a little more skeptical than with, say, recommendations for trying out some olive leaf or cooking with coconut oil.

    I realize that we're all basically just looking for anything that might help us, and most of us have lost at least some degree of faith in the medical community at large as a result of all sorts of ugliness -- I've had that experience, too. But I would just really urge people to be really critical of some of these things, especially when the claims are earth shattering and the proposed mechanisms are dubious at best.
  7. jenbooks

    jenbooks Guest

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    Thanks, that was very well put.
  8. fresh_eyes

    fresh_eyes happy to be here

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    Welcome, spit. Well said. I'm just so glad that, with the XMRV discovery, there's some light at the end of the tunnel, not just further desperation driving us all to improvise. FWIW I don't have a formal CFS diagnosis either - with the "diagnosis of exclusion" thing and no insurance, I just decided not to pay out-of-pocket for every test known to man just to tell me I have something they know nothing about.
  9. spit

    spit Senior Member

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    Thanks for the kind comments. :)

    It's been a strange trip down medical road so far; I'm sure that's true for everybody here, and the utter uselessness of most of it is amazing, honestly. My condition worsens, my doctors shrug. I've gone through periods of just not going in at all, as it never seems to go anywhere, but I'm lucky enough to have insurance right now, so I feel like I should try to get them to look into stuff while I have the means. They did catch a serious and unexplained B12 deficiency, so that's something, I suppose.

    I can't imagine (but will maybe find out first hand) what it's been like for so many folks who have been trying to manage severe symptoms for a decade or more without any kind of meaningful medical help. I do want to say that I completely understand people trying to improvise the best they can. In my most frustrated moments, I've seriously considered all sorts of things. Sometimes I joke that I'm turning into my own lab rat.

    So yes, I think the XMRV discovery is the most hopeful thing I've seen anywhere for a whole lot of people, at least providing some chance that there will be an explanation and some research into solid treatment soon. If the results of the WPI study hold up, the next few years are going to be exciting to watch. If it all pans out, I look forward to being tested at some point, and I look forward to seeing new information lead to actual treatment options.
  10. citybug

    citybug Senior Member

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    Soil organisms , ginseng

    I found this looking for neural therapy information. What experience have people had with 6. soil based organisms? Ginseng has helped me, in form of celestial seasonings ginseng energy tea (I thought it was the cortisol boost).
    Thanks, Kathy

    http://www.drkaslow.com/html/immune_restoration.html

    5. Ginseng (Red Korean or concentrated Siberian Ginseng extract) - increases IL-2, IFN-gamma and NK function. Researchers in Korea have found that an acidic polysaccharide (ginsan) derived from Panax ginseng promotes TH1 cytokines. Kim KH et al state Spleen cells became cytotoxic to a wide range of tumor cells after 5 days of culture with ginsan in a non-major histocompatibility restricted manner and the activity of ginsan was 12 times higher than that of lentinian.... ginsan induced LAK cells were CD8+- cells...ginsan induces the expression of mRNA for IL-2, IFN-gamma, IL-1 alpha, and GM-CSF....ginsan generates LAK cells from both NK and T cells...This property may contribute to its effectiveness in the immunoprevention and immunotherapy of cancer. (Kim KH et al; Planta Med 1998;64(2):110-5).

    Cho YK, Lee, Oh and Kim report on a study comparing 5.4 grams of Korean Red Ginseng daily on 16 HIV+ patients versus 10 patients who took no anti-HIV medications for 3 - 4 years. In the group using this form of ginseng, the average CD4 count increased from baseline of 301 to 359. In the control group, the average baseline CD4 count of 352 decreased to 156. Cho et al concluded that KRG has definite long-term immune modulating effect without side effects on HIV-infected patients. (Long term immunological effect of ginseng on HIV-infected patients, Cho YK et al; Abstr Gen Meet Am Soc Microbiol 1997;97:247 (abstract no. E44)).

    In another study from Seoul, Korea, Yun and Choi reported that ginseng users had a lower risk of developing cancer than non-users. The data they published indicated red ginseng was more effective in preventing cancer that the Korean white ginseng (Preventive effects of ginseng intake against various human cancers; Yun TK et al; Cancer Epidemiol Biomarkers Prev 1995;4(4):401-8).

    PCM-4 has been reported reduced tumor necrosis factor (TNF). Studies have shown that high TNF levels are associated with wasting syndrome and increased HIV replication. PCM-4 is a concentrated extract of Siberian Ginseng. There is basis to believe similar results can be obtained at a lower cost with the Siberian Ginseng.


    6. Soil Based Organisms (SBOs) (bacillus subtilis and lichenformis) - produce surfactin that inactivates lipid envelope viruses (HIV, CMV, herpes etc), kills mycoplasmas and many bacteria and candida albicans. By reducing candida albicans, SBOs reduce Th2 cytokines. It has been reported that Bacillus subtilis helped symptoms associated with CFIDS, candidiasis, herpes, allergies, Streptococcal and Staphylococcal infections. There are published reports that SBOs helped shift the cytokine profile from Th2 to Th1.

    Bacillus subtilis and lichenformis produced a detergent-like substance called surfactin that dissolves the lipid envelope around certain microbes thereby rendering them completely inactivated. German researcher Vollenbroich D reported The antiviral activity of surfactin, a cyclic lipopeptide antibiotic and biosurfactant produced by Bacillus subtilis, was determined for a broad spectrum of viruses especially herpes and retroviruses... (Biologicals 1997;25(3):289-97)

    Mycoplasma and bacterial membranes also disintegrated by exposure to surfactin (Appl Environ Microbiol 1997;63(1):44-9). A lipopeptide similar to surfactin is produced by bacillus lichenformis that may be even more potent at dissolving lipid envelope viruses than surfactin from subtilis (Appl Environ Microbiol 1994;60(1):31-8). Potent antifungal volatiles (AFV) that inactivated most types of fungus are produced by bacillus subtilis (Fiddaman PJ et al. J. Appl Bacteriol 1994;76(4):395-4-5).

    Products that contain both the bacillus subtilis and lichenformis have been reported to help symptoms. Scientific research demonstrates that surfactin produced by subtilis inactivates lipid-envelope viruses (HIV, HHV-6 strains A and B, EBV, CMV, herpes.
  11. Chicoric acid from Echinacea inhibits Integrase. The only question is how well the echinacea or olive leaf compounds survive first-pass liver metabolism, and how well they enter the infected cell.
  12. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
  13. lebowski

    lebowski

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    vit d

    i think this should be in natural antiretroviral section , if not move it pls

    ABSTRACT

    Toll-like receptors mediate the activation of critical host defense mechanisms such as cytokine/chemokine secretion and a vitamin D-dependent anti-microbial pathway in response to pathogens. Here we investigated whether TLR8, which mediates cellular activation by HIV-1 ssRNA, triggers these two key defense mechanisms in human monocytes. We found that HIV-1 ssRNA and a synthetic TLR8 ligand stimulates monocytes to secrete IL-12 as well as the CCR5 ligands RANTES, MIP1 and MIP1β. Furthermore, HIV-1 ssRNA triggered gene expression of two critical components of the vitamin D-dependent anti-microbial pathway, CYP27b1 (1- hydroxylase) and the vitamin D receptor, which together enables monocytes to induce gene expression of the anti-microbial peptide cathelicidin. Pretreatment of HIV-1 with cathelicidin peptide directly inhibited HIV-1 infectivity. Finally, the active vitamin D hormone 1,25-dihydroxyvitamin D3 triggered cathelicidin gene expression in HIV-1 infected monocytes and induced an anti-viral activity against HIV-1. The 1,25D3-induced anti-viral activity was ablated by a cathelicidin specific siRNA. In conclusion, activation of human monocytes with HIV-1 ssRNA triggers 1) release of cytokines/chemokines with known roles in HIV host defense and 2) a vitamin D-dependent anti-viral pathway that is mediated by cathelicidin

    http://www.fasebj.org/cgi/content/meeting_abstract/22/1_MeetingAbstracts/672.22
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Successful herbal approach to XMRV

    Hi Everyone,

    I think I have posted before that I tested positive for XMRV through sophisticated kinesiological testing against a sample of the retrovirus. My doctor prescribed a potent herbal combination that tested well against XMRV in my body. I am nearly finished with the initial round of therapy and my doctor just checked me again for an active XMRV infection. I now test negative. It may well return, but for now, it seems to be in the "turned off" state. My doctor has, obviously, not treated this retrovirus before so he will just keep monitoring me and treating as necessary.

    I wish I could say definitively that this would be helpful for others, but I can only report my experience.

    Interestingly, when the XMRV retroviral load had been reduced, mercury started being released and my doctor said that it was now a good time to do a laser detox for mercury. He did this and will follow up with micro silica for longer term oral chelation.

    Best wishes!
    Sushi
  15. dipic

    dipic Senior Member

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    That sounds great but my question to you would be do you feel any better?? And if so, how much and how sick would you say you were before?
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    dipic,

    Yes, I feel better--with the caveat that I am still taking the herbs and they are strong--meaning that while I am taking them I feel the effects of these "killer herbs." I finish this round in 2 days and I'll report in again then. I have also taken this doctor's herbal treatments for Lyme. I again felt "not so great" while taking the herbs, but after finishing felt a great deal better.

    After this round of herbs I start the micro silica for chelation and I don't know how that will make me feel, as it is a new treatment (Klinghardt based) and I haven't seen much discussion of it yet--except that Klinghardt is reporting that it is the best chelator he has found yet. There will be a few days in between finishing the herbs for XMRV and starting the micro silica, so those days should tell me more.

    However, today I did some computer work, drove for an hour and shopped for an hour, rode my bike for 6.5 miles and then did yoga. No way I could have done that before starting treatment with this doctor. I have also had 5 laser detox sessions with him and treatment for bacterial infections.

    I have been getting steadily (and very slowly) better for a couple of years (methylation therapy, gut therapy, nutritional therapy) but before that I was only able to crawl around my condo and spent many days a week in bed.

    Time will tell, but so far so good.

    Sushi
  17. abstractblue

    abstractblue Guest

    So, what's in this potent herbal concoction? I want to be able to ride my bike 6.5 miles a day.
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It is a combination from the company Monastery of Herbs. There are 3 bottles--one of capsules and two liquids--many, many ingredients. It is in their "viral range" of remedies. I tested well for their # 67 combination. There are also 2 other remedies I take with it to assist uptake and there are a number of prohibitions before and after taking this remedy to assist assimilation. My doctor (who has only been testing for XMRV for a month) has found about 10 patients who are positive for it.

    Not all test well for the same remedies, but several others have tested well for the Monastery of Herbs # 67. There are too many ingredients to list and they work synergistically. Perhaps the ingredients are listed on the web, though this company only sells to medical practitioners.

    Again, time will tell--later I might need to take a pharmaceutical but if this really is working, I would certainly prefer to do something less toxic than an antiretroviral.

    Sushi
  19. abstractblue

    abstractblue Guest

    Sounds expensive and iffy :(

    Anyone heard anything about coconut oil? It's supposed to be an antiviral. It's funny, I just started typing in "coconut oil" into google and it had a dozen suggestions for me. Apparently it also cures acne, hair loss, skin problems, weight problems, cholesterol problems, and diabetes. Nevermind. Haha.
  20. ariel

    ariel

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    Hi Sushi,

    That's great that you found something that works for you!

    Are you able to list a few of the key ingredients in #67? I went to the website and it seems that they only dispense to medical professionals, and they don't seem to list their products. I'm not in the States so they are not so easy to access.

    Thanks!

    Abstractblue: Coconut oil is meant to be very good. I keep forgetting to try it out properly, so thanks for the reminder. It is a natural anti-viral. Many people with HIV take 2-3 tablespoons a day.

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