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Lessons from ME/CFS: Finding Meaning in the Suffering
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Antiretroviral Trial

Discussion in 'XMRV Testing, Treatment and Transmission' started by Daffodil, May 29, 2010.

  1. gu3vara

    gu3vara Senior Member

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    In the mean time, if you feel like trying it, I have a feeling that aloe vera gel has some affinity against XMRV, I know it does activate macrophages, probably less effectively than gcmaf of course does but that's cheap :) Maybe you would have something going on mixing it with ART. (making sure there are no interactions of course)

    There is no science whatsoever behind it, I just know I take it based on a recommandation of a healer (with let's just say a lot of intuition ;) ) and it does me a lot of good things. Sometimes combining therapy can potentiate the effects.

    I know I must look odd talking about healer on this forum rather scientific...!
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I believe Dark Chocolate could be good though, it is supposed to help with your serotonin levels. This is my desert for the day.
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    How about 5HTP also or instead of anti-depressants?
  4. leaves

    leaves Senior Member

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    I strongly recommend Sam-E. Prices have dropped and at vitacost Doctor's Best is excellent value. It raises both dopamine and serotonine supports methylation and protects your liver.
  5. boomer

    boomer Senior Member

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    A word of caution about sam-e though. Some people can get really depressed on it.
  6. leaves

    leaves Senior Member

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    oh did not know that!
  7. Daffodil

    Daffodil Senior Member

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    shouldn't 3 different antiretrovirals with pretty good action against XMRV, lead to much more improvement than this? i am nowhere near even 30% better after over 4 months on these drugs. even ampligen does better than this!?

    i'm sure i have a retrovirus and i jumped on the XMRV bandwagon right away because i was so desperate for an answer....but i just don't know what to think now.

    everyone says the mind clears first....i have been hearing that forever....mine never does!

    :(
  8. Rrrr

    Rrrr Senior Member

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    sue,

    hang in there!!!!!! here are a few thoughts:

    1. for anxiety or depression: Kava kava (Gaia brand, PM me if you want me to send you a few to sample), L-Theanine (Jarrow brand), 5-HTP (Jarrow brand)

    2. to help accompany the ART, make it more effective:

    (someone else sent this to me, so i am forwarding it)

    K-Pax Immune Booster (the powder that you mix with a drink)

    K-Pax: you can buy a sample of it for $2.95:
    http://www.kpaxpharm.com/vitaminsandsupplements/immunesystemboosters/protein-blend-taster-cv

    my friend said she took it and instantly felt better. That almost never happens with anything, and she was feeling like mega crap when she tried it, so it seems worth mentioning.

    It is a micronutrient immune booster formulated by an AIDS doc someone else with CFS once saw in SF, Jon Kaiser, who uses this and other formulas in combination with loser-dose HAART antiretroviral therapy for HIV/AIDS. He has had impressive, tested results with this combo. So this person thought she would try the micronutrients first and then later possibly HAART.

    It uses rice protein powder and is only sweetened w/ stevia, so might work for those who are more reactive to oral supps.

    Dr. Kaiser had some good immune support suggestions even in 1992. My friend took this one formula he recommended then (which he also, ironically, gave to AIDS patients) and it was helpful. So few things have ever helped that she thinks he is pretty good at picking out and formulating supplements, and he knows a lot about what works for AIDS -- which, let's face it, seems to apply to us now.

    Rrrr again: I plan to order like 4 of the 2-pack $2.95 samplers. Each $2.95 sample contains one day's dose, but if you buy it in larger quantity it's cheaper per day. Also, the materials they sent me say Medicaid will cover it w/ pre-approval, so if anyone figures out how to make that happen, please let me know.

    Research Studies

    For information on the K-PAX Canadian Study (The MAINTAIN Study), which is currently enrolling patients, please http://www.kpaxpharm.com/canadastudy.html click here
    .
    http://www.kpaxpharm.com/vitaminsandsupplements/immunesystemboosters/immune-support-8pack K-PAX Immune Support Formula was the micronutrient formula tested in a double-blinded, placebo-controlled clinical trial which demonstrated a positive effect on the immune systems of HIV(+) individuals on antiviral therapy.
    Forty HIV-infected patients taking a stable antiviral medication regimen were randomized to either the K-PAX formula or placebo groups. After 12 weeks, the patients taking the K-PAX formula experienced an average 24% increase in their CD4 count compared to no change in the placebo group (P=0.01).



    The mean absolute CD4 count also rose significantly by an average of 65 cells after 12 weeks in the micronutrient group versus a 6 cell decline in the placebo group (P=0.029).



    This research study was presented at the 2006 World AIDS Conference in Toronto (Abstract #0402). It was also published in the August 15th issue of the Journal of Acquired Immune Deficiency Syndromes (JAIDS) - Kaiser JD, et al. JAIDS 2006;42(5):523-528.
    To download a copy of this study directly from the Journal of AIDS website
    http://journals.lww.com/jaids/Fullt...nt_Supplementation_Increases_CD4_Count.1.aspx
    click here


    K-PAX is a dietary supplement and is not indicated for the diagnosis, prevention, or treatment of any medical condition. Individual results may vary.
  9. cfs since 1998

    cfs since 1998 *****

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    Possibly it is not enough to just inhibit the virus, but the immune system has to be stimulated as well (e.g. with Ampligen).
  10. Charles555nc

    Charles555nc Senior Member

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    From another post by me, with some advice,

    I would really like to try the Raltegravir...can someone please email either the list of "xrmv literate" doctors or whoever your seeing who would be willing to prescribe antiretrovirals for lyme/cfs. Charlesbeutt@gmail.com. I can keep the list to myself if you'd prefer.

    I have had lyme/cfs for about 5 years (Im 30) but my symptoms are more advanced because I was put on steriodal anti-inflammatories (immune suppressants). Truly a tragedy, I dont think I really even have two years to wait for a treatment. I have tried hundreds of treatments including a combo of viracept, tenovir, and AZT. I didnt try raltegravir because I couldnt purchase it. Azt made me worse, anyone who reads the side profile knows that it makes you more susceptible to bacteria infections (nasty even if they are secondary to xrmv). You might want to go off the AZT and just do the Raltegravir and Tenovir for awhile. I have a small list of things that worked for me but the three most noticeable were...

    1. I used to having insane sweats, sometimes at night or during the days. Felt like I was melting and my mind along with it. Two weeks of Famvir and my sweats are 95% better for the last two years. Sadly did not effect my other symptoms. Got the idea from a lymenet poster.

    2. Edta, either suppository or intravenously helps break up biofilm (orally only 5 percent is absorbed). Biofilms develop whenever "bad" bacteria, fungus or group of parasites hang out too long inside the body-like in immune suppressed individuals. Viruses can exist inside bacterial biofilms also. I took tindimax (less neuro toxic than flagyl) after several suppositories of EDTA (over about 6 hrs) and noticed a 15-20% improvement in mental clarity+overall well being for the last 3 weeks. So I'm about 30% of my former self. My thoughts for my experiment were that the EDTA eats away the metallic or calcium coating on the biofilm then the tindimax blows up the cyst form of lyme which is also known to exist inside biofilm communities. Take a day off every time you use EDTA and do NOT take zinc, iron, calcium when you use EDTA, is what my doctor suggests. Repeated use of edta (every other day) may help stop what I think is biofilm related autoimmune responses I have gotten from certain vitamins/drugs.

    3. Sugar, diet sodas, high stress, poor sleep, iron from high meat intake, especially red meat or from supplements, copper, and vitamin D can make your symptoms 10x worse. Vitamin D supplements make my symptoms 4x bad by itself and practically locks my jaw for a week or two afterward, for whatever reason. Melatonin (2-3mg) can really help you get some decent sleep (skip a day in between uses), help depression, minor energy increase, and gives a general immune boost. Dont take too much at once, I get an autoimmune type reaction.

    So
    1. You get sick (I was bit by a tick) probably by a combo of lyme disease, herpes viruses, and xrmv
    2 Your immune system is suppressed rapidly
    3 Biofilm develops, different compositions in everyone- Lyme or otherwise, about two to three months in
    4 Your finally treated with antibiotics (one or two months after the initial infection)
    5 You feel better on a certain antibiotic combo but the biofilm regrows antibiotic resistant (since the shell is not disrupted) and the xrmv is not addressed
    6 Slow growing xrmv continues to spread, which with the biofilm- keeps you immune suppressed. Even if the lyme/herpes infections are knocked down.
    7 Continued antibiotics after a certain point just harm good bacteria in your gut but not the biofilm bacteria
    8 You go off antibiotics and lead a low functioning life
    9 You come to this forum and others looking for help :D


    Edit: Selenium, NAC, and glutathione are supposed to be good natural antivirals, and have been used for support against HIV. I get crazy reactions from these vitamins...generally feeling slightly better then slightly worse but not really bad worse- immune reconstitution syndrome or hexheimer could also explain these reactions.
  11. boomer

    boomer Senior Member

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    Charles555nc, do you still think it is worth it to take the selenium, nac and glutathione or do you stay away from it because of the reaction. My daughter started nebulizing b12 and glutathione this week and she hit quite a depression. She isn't sure what to stop doing. Maybe it is just he b12 causing the depression?
  12. Daffodil

    Daffodil Senior Member

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    hi all. i am too sick to read all the posts at the moment....just got back from doc. i am always asking him about eradication but he made it clear that is not going to happen anytime soon so i may as well stop crying over spilt milk. i asked if my face is going to get all sunken in like HIV patients on the drugs and he said 'maybe'. he said they start to notice that after about a year. he said it is not the azt but the other 2 that might cause it.

    i assumed that if replication was stopped, that i would be well...since XMRV doesnt have any accessory proteins to pump out... but apparently, even latent, retroviruses in a cell can cause a lot of problems depending on where they insert themselves.....

    turns out my persistent cough is not acid reflux but probably whooping cough.

    i wanted to take a whole bunch of antidepressants and mood stablizers so i asked the doc if that would be an added burded on my liver, etc. he said it would. my ALT was a little elevated but not serioius.

    as expected, i left the office miserable.

    still, though, i am much better on the drugs than off.

    thanks for reading
    sue
    xox
  13. Rrrr

    Rrrr Senior Member

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    sue,

    thanks for the update from yr doc. i had not heard about this sunken face thing.

    p.s. i usually leave my doctor's office miserable too!!!

    rrrr
  14. Charles555nc

    Charles555nc Senior Member

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    Well if you want to know for sure, have her go off both for 3 days then just have her take b12 for two/three days and selenium for two/ three other days and see which makes her feel worse. Personally I havent had a bad reaction to just b12 (with nothing else mixed in). I tried selenium and glutathione the last couple days and had increased pain, increased oral thrush, increased reaction to distant sounds, and increased anxiety. Idk maybe they are something I'll take once a week and only one pill each (I think I should try not to be deficient in selenium or glutathione).

    We are routing for you Daffodil! Read my last post when you feel better it has some suggestions for you. I called to make an appointment for ampligen once, but couldnt afford it atm, but even they werent entirely sure how it works (or maybe just careful to not make claims they couldnt back up)

    Best wishes all.
  15. Daffodil

    Daffodil Senior Member

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    hi all. i am noticing a little more energy these days; able to do a little housework. also, does not take as long to recover from exertion. brain fog is maybe just a tiny tiny bit better. need lots of rest and sleep to maintain even these minor improvements.

    chronic cough still there, but less. i think that was hindering improvement. doc said it is probably whooping cough (not acid reflux). the odd time i feel a little feverish....i wonder if one can have chronic bronchitis without sputum?

    sue
    xoxo
  16. grant107

    grant107 Jean

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    Sue,
    Does your doctor think azt is safer than tenofovir? Azt causes fat to move to different parts of the body which is what I thought was the cause of the face being sunken. I am thinking of taking only 2 drugs, isentress with either azt or tenofovir. Also, are you continuing to have the nausea side effects of the drugs? Good luck, I'm pulling for you.
    Jean
  17. Alesh

    Alesh Senior Member

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    Daffodil, I had a similar dry cough constantly for the first four years. I even had an X-ray scan of my chest but nothing appeared on it. Now I have it when I am more sick. My understanding of it is that it is some opportunistic infection.
  18. Daffodil

    Daffodil Senior Member

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    thanks guys. the nausea is still there but much better than before. i want to stay on azt because it is the only one that gets to the brain in significant amounts. strangely, my doctor said it was isentress and tenofovir that might cause the fat distribution problem.

    i dont know what to make of the cough. i had a chest x-ray several weeks ago, which was negative. one day i think the cough is gone but then it will appear again. it is less now, though. if it continues another few weeks, i will ask my doctor to investigate further.

    thanks for your suggestions...:)

    sue
    xoxo
  19. Daffodil

    Daffodil Senior Member

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    sick again today. this is going to take 10 yrs. fk
  20. energyoverload

    energyoverload Senior Member

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    Hi ladybug,

    Sorry to hear you are not faring too well. This XMRV finding really doesn't seem to be as straight forward as myself, and many have prayed it to be. But surely to god, there has to be something fundamentally wrong like changes to our DNA in order to be this incapacitated. I know Dr. Judy mentioned about Glutathione and inflammation at some point, can't remember where..
    Have you been tested for mycoplasma, Sue? I was just reading about findings of this by Dr Nicolson... but I'm sure it's just another co-factor/infection... :S

    Have you heard of this NTFactor Phospholipids product; this is meant to restore the integrity of the mitochondrial and cell walls and thus supposedly enable the mitochondria to function more optimally. Consequently, generating more ATP. I've decided to try this and Lypo-Spheric GSH (glutathione). This is meant to have very good oral absorption. Dr Garth Nicolson has done some interesting papers on how they had around a 40% fatigue score improvement in CFS after patients were given this supplement for 8 weeks.
    I feel really lost for options, I feel I have to give this a go, it must mean something, as he is a respectable physician. I wonder if even when we get rid of the XMRV, oxidative damage to the cell membranes leaves all our cells and mitochondria functioning improperly. I wonder if this would be a good adjunt to ARV therapy?
    And I don't suppose anyone around here has any idea how to get into an Ampligen trial? I suppose it's probably impossible. It sounds a really promising drug after that testimonial I read by Kevin: http://forums.aboutmecfs.org/content.php?188-Tests-Confirm-It-Ampligen-Works!

    You don't think there could actually be another retrovirus that actually causes this illness, that is rather more susceptible to an alternate combination of anti-retrovirals? It's just with the DeFreatas study, in light of this X finding what is the significance of her finding? Surely it could still be a factor...?

    Stay strong sue,

    Be good to hear your thoughts,

    Jake

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