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Antiretroviral Trial

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

  1. Charles555nc

    Charles555nc Senior Member

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    I read a long post about a person, on this forum I think, who was on t3 thyroid medication that wasnt tapered up, high dose pregnenolone, and statins who had a heart attack...but she blamed the t3 medication not being tapered and the high dose pregnenolone.

    I hope she's doing alright. Her post was from a year ago.

    Im trying to find out which statin is the least harmful, possibly simvastatin.
  2. Charles555nc

    Charles555nc Senior Member

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    On that same post by the person who had a heart attack, she was talking about taking vitamin c to bowel tolerance (took about 25 grams over two days) and I started doing that and taking glutathione and some benicar and Im feeling way better than what I was feeling a couple days ago.

    Maybe ARVs, Nexavir, benicar immunological changes increase the demand for gluthione and vitamin c...

    I remember trying massive doses of vitamin c a couple years ago and trying gluthione 6 months ago and on both occassions feeling much worse....

    Theres a fibro and fatigue center giving away a free doctor consultation about 150 miles away...I called and they said they arent doing the statin, pregnenolone, and coq10 protocol anymore (the teitelbaum post i referenced on the other page described the particulars)

    I wonder what new protocol they are hanging their hat on now...

    How ya doing Daffodil?
  3. Daffodil

    Daffodil Senior Member

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    hi charles thanks for asking. i seem to be deteriorating a lot. stayed in bed most of the day, have chest pains, more inflammation in my head, and vomited as soon as i woke up. i feel that i am nearing how sick i was before i began the ARV's. since my NK cell function is now 3, i am not surprised.

    my RDW is even higher now, at 18.5. my doctor is not concerned.

    i do feel as if the azt is no longer helping as it once did.....and perhaps stopping the vistide mid-treatment may have had a bad effect too, who knows?

    i just re-started tenofovir

    i find it perplexing that my NK cell function spiked so high just for a little while....i wonder if it was a lab error.

    over the last 6 months, i really started to think the main retroviral(?) infection was suppressed because of the drastic NK cell function improvment, and that now all i had to worry about was a herpes virus co-infection....but now it looks like it was all wishful thinking.
  4. Charles555nc

    Charles555nc Senior Member

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    You gave the vistide a fair chance and it didnt work.

    I just took like 35 grams of non acidic vitamin c (sodium ascorbate) over 3 days along with about 3 grams of Taurine and Im seeing a big improvement in my mood, nerve function, hormones...I think anti virals (arvs, nexavir, etc) help improve the situation, but maybe we have to help our bodies, out of their "antiviral exhausted" phase also.

    Its so werid, I had a couple seconds of extreme nerve pain yesterday so much that I screamed, but it was like my nerves were being reactivated from numbness...and I felt much better afterwards.

    Edit: Took another 20 grams of vitamin c, another gram of taurine, and a bit more pregnenolone today.
  5. undcvr

    undcvr Senior Member

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    Daff how long did you take the Vistide for ?
    So you have now stopped the Vistide and the side effects keep going on ? How long has it been since you stopped it ? Sorry to hear that.
  6. Daffodil

    Daffodil Senior Member

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    hi all. i took vistide for only 2 months. i had intended to keep going and take prescription anti-nasuea meds but i heard a few stories about kidney damage from real life people so i kept getting worried. also, the nausea was so extreme, i couldnt even look at the probenecid pills witout literally gagging. i was also losing my appetite from the nausea. its hard to explain, but even thinking of the whole experience made me want to vomit. i guess i just wasted 10K.

    maybe it was a stupid move, i dont know....but it was costing $1400 per infusion and i kept thinking that i would be stuck with no money at all if i needed to see a US doctor again.

    things are very very bad right now. i plan to add valcyte again even though it wont work, just for something to do.
  7. taniaaust1

    taniaaust1 Senior Member

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    Take care Charles.. from your post, you appear to be unaware about facts on Vitamin C (I studied nutrition and vitamins for 2 years at college). Just cause its usually a safe vitamin doesnt mean that it cant cause more serious issues. It can.

    My own bowel tollerance to to it is only 5-6g of vitamin C per day (I cant take any more then 3mg at a time).

    With vitamin C it is a water soluable vitamin and hence will not stay in ones system for long, you basically pee it right out again. For this reason to get stable vitamin levels of it it is best to take twice a day or more, some take it hourly for very stable levels.

    Taking large doses can give kidney stones.

    Ones body also adjusts to how much Vit C one is taking eg the higher the dose you take.. the less your body absorbs once you take it past 500mg. eg 80% of 250mg will be absorbed, that 80% drops after 500mg.
    Due to body adaptation to the amounts being taken.. ones body absorbs less and less from its foods. A sudden stoppage of large doses of vitamin C can actually cause scurvy due to this.
    (in women who are pregnant... this rebound scurvy can affect their babies and give them scurvy).

    I strongly suggest you change the way you are taking your C and when you decide to stop it.. it the amounts should be SLOWLY reduced over 2-3 weeks (due to the possibility of causing rebound scurvy issues).

    I too find vitamin C helpful... probably cause its an antioxidant.
    ...

    Daff.. sorry to hear that things arent going so well for you right now. You do thou appear far less depressed then you used to be.
  8. Daffodil

    Daffodil Senior Member

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    my HHV6 IgG EA test was negative. so there is no point in my taking valcyte i guess. it appears i am out of options.
  9. Charles555nc

    Charles555nc Senior Member

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    I take sodium ascorbate (vitamin c) therefore there are little acid issues that you would get from ascorbic acid or calcium issues from calcium ascorbate. I took an extra 15 grams of vitamin c yesterday before finally reaching bowel tolerance, which I actually hadnt reached. So thats about 50-55 grams of vitamin c total.

    I also take edta (which binds to calcium) to help prevent kidney stones.

    Taking vitamin c to bowel tolerance once a month or once per 2 weeks is pretty good for you. But I will make sure to take 1 gram of vitamin C a day to prevent "rebound scurvy" which I have never heard of before.

    Daffodil, you know you can go out right now, or hell Ill send you a bottle of sodium ascorbate and maybe youll improve like 40% like I did with vitamin c (never thought Id type those words). Also 100 mg pregnenolone and a gram of Taurine a day. Also avoid high calcium food/drinks imo.

    Maybe massive doses of vitamin c improve your Rnalase after you take anti virals or something. Its nice to feel not "near death" right now.

    Maybe now I can tolerate anti retrovirals?
  10. globalpilot

    globalpilot Senior Member

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    maybe it's just time to look in another direction. Have you checked for enterovirus yet through Dr Chia ? Or nagalase ? There are treatments for the enterovirus and the nagalase.

  11. Charles555nc

    Charles555nc Senior Member

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    I know that question is meant for Daffodil, but I was positive for coxsackie virus a, the treatments for that are alpha and gamme interferon according to Dr Chia.

    But no one around here will give me interferon unless I have a documented low natural killer cell function, and mine are in the low end of normal.

    Btw I was 100% honest about being willing to ship you those vitamins Daffodil, if you really will try them.

    My posture is improving...I love it.
    Francelle likes this.
  12. Daffodil

    Daffodil Senior Member

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    thanks a lot charles. i will PM you when i am able:)

    i have been checked for enterovirus several times...negative.

    i dont think i have had any negalase test.

    kind of scared now
  13. Daffodil

    Daffodil Senior Member

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    u guys think lipkin will find a new virus?
  14. globalpilot

    globalpilot Senior Member

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    Oxymatrine helps 50% according to Chia. I had a consult with him a few weeks ago and he says interferon only helps with pain and he doesn't use it much.

    On a promising note he also mentioned new drugs for hepatitis (also an RNA virus) coming out soon that may help enterovirus and a new drug specific for RNA viruses coming out soon.

    From my own research, enterovirus replicates in an oxidized environment so liposomal glutathione might be a big help too. I have a reference for that at home I can dig up if you want - I'm at the cottage right now. In the in vitro study, antioxidants significantly reduced replication.

    I also have high nagalase. I'm not sure if enterovirus produces that. Dr Chia didn't know and said thought it might be a bacterial overgrowth in the gut producing it. In any case, it interferes iwth the immune system.


  15. Tristen

    Tristen Senior Member

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    Very helpful info, thanks for posting.

    I can't take the Oxymatrine but have been curious about Dr Chia's current views on the IFNa Tx. I've been Dx with EV's, and do have easy access to the Tx, but I've been reluctant due to knowing the Tx is brutal and hearing (limited) reports of it exacerbating me/cfs. It's contraindicated for those with certain autoimmune diseases.

    Below I've left links to the new HCV tx's which include all the new Protease, Polymerase inhibitors and other DAA's (Direct Acting Anti-virals) currently in pipeline. Deaths due to HCV surpassed AIDS in 2007. Lots of money pouring into this area of Tx research. We will surely, directly or indirectly, reap some of the rewards.
  16. globalpilot

    globalpilot Senior Member

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    Did you check by biopsy ?

    Antibody testing according to Chia was not finding all the cases or even most of them.

    And even if doing antibody testing, Chia says to do the ARUP neutralization test. Others have reported negative results by other labs and positive at ARUP.

    You didn't say what test you did.
  17. globalpilot

    globalpilot Senior Member

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    Hi, You forgot the links :)

    I'd love to see them. This must be what Chia was referring to.

  18. Tristen

    Tristen Senior Member

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    Scroll down to posts 1415 and 1416 in this thread.

    All the drugs in pipeline are listed, so I would bet the ones he's talking about are there. Hope that helps.
  19. Daffodil

    Daffodil Senior Member

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    hi global. thanks for the info. i just had some regular antibody tests. no one here will do a biopsy but maybe i can find some way to send blood to ARUP. i know they do not accept blood from canada.

    if i did have enterovirus, i would not have access to anything intravenous...but maybe i could buy oxymatrine....is it equilibrant now that we are supposed to buy?

    the hhv 6 foundation says its not necessarily true that i dont have hhv6 just because the hhv igg ea p41 antibodies were negative. i'm still debating whether to add valcyte to my regimen. i dont think i'll add the valtrex this time around.

    why doesn't any pathogen i test for ever come out positive????

    whatever "pure" CFS is, i have it.

    can you take oxymatrine, valcyte, + the hiv meds all at once?

    also, there is this special mushroom thing...reishi chaga or something?...that is supposed to help nk cell function....its like $300 a bottle i think ...and my doctor said to take 3 pills 3 times a day, if i remember correctly .... wonder if i should take that for a while too.

    thanks.
  20. Daffodil

    Daffodil Senior Member

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    i am experiencing a little relief after re-starting tenofovir.

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