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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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    Lugols Iodine, I had totally forgot, works so good. Just reordered some more. Daffodil you might want to do a drug reevaluation, like going off all drugs, see how u feel, and then readd only the drugs that u think are working for you.

    Went to the mall today like it was no problem...other than sore feet from regular shoes, I feel ok...
     
  2. maryb

    maryb iherb code TAK122

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    Charles doesn't your high Vit C intake mean you are also taking a lot of sodium (salt) a day? I'm a great believer in using high dose vit c, and the liposomal one is good but so expensive, but which one to choose is problematic for me, I don't suffer from low blood pressure.
     
  3. Charles555nc

    Charles555nc Senior Member

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    I drink alot of water, and occassionally I take some potassium and magnesium to balance out the sodium.

    The "high blood pressure from salt" thing is alot like the "magarine instead of butter" campaign to me. Completely misguided. Trans fat (magarine) is alot worse than butter, but people repeat what they hear from other people without looking at research.

    But more to the point, my blood pressure is fine also.
     
  4. maryb

    maryb iherb code TAK122

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    Thanks Charles I am going to give it a go, have ordered some from iherb, as I say the liposomal one is just way too expensive, I'll keep an eye on my blood pressure anyway don't think it harms.
     
  5. Charles555nc

    Charles555nc Senior Member

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    Im 210lbs and I take 6 grams of vitamin c per meal, so you use the formula: x = (your weight/11)/3 where x is the amount of vitamin c u should take in grams, per meal.


    Are you doing all the stuff Im doing or just the vitamin c?
     
  6. maryb

    maryb iherb code TAK122

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    No I'm trying to do the methylation protocol but feeling so bad on it, even just 1/4 folate and 1ml hydroxy b12- taking bvits, calcium orotate, magnesium, zinc and vit c, usually the liposomal 1 sachet a day, been looking at what you are doing though, I presume you have not the methylation problems?
    I still have 3 mercury fillings - had 4 out last Dec from which it took me 6 months to recover and still not back to where I was last year, so I'm very careful and thinking maybe I should leave the protocol for the time being until I am mercury free.
    Sorry hijacking alert - I wont post any more on this thread
     
  7. undcvr

    undcvr Senior Member

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    Hey Daff hv u tried Artemisinin and hi dose Vit D ? You really should.
     
  8. Charles555nc

    Charles555nc Senior Member

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    I take only a pill of methyl folate a week, folate can feed bacteria infections in too large a dose. Your right I should stop hijacking and start a new thread.

    Hows the daffodil senorita?

    Edit: 150 pages, woot
     
  9. Daffodil

    Daffodil Senior Member

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    charles.....i am not too bad. my energy is up....and i even feel just a TINY TINY bit better in my head.

    i am getting the same slight headaches i get when something starts to help me for a while...i am certainly not going to get used to it cuz nothing has lasted long in terms of helping me, so far.

    now i am even starting to wonder if the chest pain, shortness of breath, arrhythmia has to do with the IV helping me...cuz when AZT started to help me, i had a HECK of a lot of chest pain. somehow the nervous system is involved...

    my NYC doc wants me on 2000 mg IV glutathione once a week (if i remember correctly - might have been twice) but this naturopath is making me work up to that dose. i dont see the point of that but oh well.

    my NYC doc has also recommended some new bacteria testing...one from Fry Labs in Texas...and some other Lyme stuff. but i am so sure i dont have bacteria and am so tired of wasting money. my vit-D levels dont indicate bacteria...my c-reactive protein has been normal...and i will guess my sCD14 isnt very high either.

    when i think back to the 100K+ dollars we wasted on toxic valtrex/valcyte/vistide and God knows what else..ugh. i have to try not think about it.

    if someone asked me right now, i would tell them to take tenofovir and glutathione.

    now i suppose it is possible that its the myer's cockail that is helping and not the glutathione...but since the glutathione has strong antiretrovial properties..i strongly suspect that that is it.

    i am 100% sure now that my entire problem is this retrovirus - NO herpes virus - and that advanced disease might need more than just tenofovir, azt, and raltegravir...but why i dont know. perhaps i just have too high an amount of virus in my CNS - which is what i always suspected and feared.

    oh well, this temporary upswing might make xmas a little easier at least.

    xoxo
     
  10. Daffodil

    Daffodil Senior Member

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    http://www.ncbi.nlm.nih.gov/pubmed/8911579


    "This would be in agreement with data obtained in cells exposed to herpesvirus type 1 (a DNA virus) or to Sendai (an RNA virus), showing that the suppression of virus replication by GSH is related to the selective inhibition of envelope glycoproteins. These results suggest a potential role of GSH in combination with other antivirals in the treatment of virus-related diseases."


    interesting. all these years and i ignored glutathione lol
     
  11. Daffodil

    Daffodil Senior Member

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    well its the second day after my myer's + 2000 mg glutathione IV and i feel awful. not at all like the 1st time. i was hoping the feeling bad yesterday was a good sign but today is bad again. nausea + worse inflammation and fog.

    maybe this will turn out to be like all the other things i have tried - another dead end. my NYC doctor wanted me to do 2000 mg glutathione/week for 8 weeks and not add the myer's yet. maybe i will try that.

    i have read about people getting worse on IV vitamins...can that really happen? could you get worse and then better???
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Daff your also taking supps to increase glutathione inbetween IV's??

    cheers!!!
     
  13. Daffodil

    Daffodil Senior Member

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    hi heap...no i am not taking anything in between the IV's...only some co-q 10 when i remember...

    i keep having this chest ache...i did an EKG which i assume was normal so now they want me to do a Holter. blahh

    whenever i start a treatment, my heart acts up.

    there are so many cases in CFS (and HIV even) where cardiac testing is normal but a few days later, the person drops dead!

    this naturopath is making me read this positive affirmations book (as you have probably noticed, i am not the most positive thinking person LOL).

    how are you doing heap?
     
  14. Charles555nc

    Charles555nc Senior Member

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    Merry Christmas,

    Daffodil and all!
     
  15. Daffodil

    Daffodil Senior Member

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  16. maryb

    maryb iherb code TAK122

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    Daff for what its worth - I do really well on IVs without the gutathione, that added makes me feel ill?? Haven't a clue why.....
     
  17. Daffodil

    Daffodil Senior Member

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    thanks for letting me know, mary:)

    i think i will do just glutathione for 5 more weeks..cuz my NY doc wanted me to do 8 IV's of just glut. and see what happens. i'll try myer's after that....

    hope some news comes soon from lipkin...
     
  18. Charles555nc

    Charles555nc Senior Member

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    I read that link about the doctors office with like 2 or 3 deaths associated with myer's cocktail (2 in one day for sure). Thats just crazy and creepy. I think it seems the myers coctail is "custom made" with varying ingredients, and this doctor might have used extreme ingredients/dosages on the deathly ill.

    On one hand u want doctors to help even the very ill, but they all had alot of improvement on chelation and then died of heart problems after the myer's infusion.
     
  19. Daffodil

    Daffodil Senior Member

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    hi charles. if the deaths were at that doctor's office only, maybe he wasnt using sterile equipment or something? strange that it would be only at that place.

    i have been doing very poorly, with chest pain, neck pain, .typical CFS symtpoms but more fatigue than usual. mostly bedridden again. new symptom is mestrual and colon cramps. they are pretty bad and pretty constant...and not related to my period either.

    i am getting holter and thyroid ultrasound this week (last one showed many colloid cysts)...will beg doctor to order pelvic ultrasound too. CFS people are at high risk for ovarian cancer....and i am worried about this weird feeling in my lower abdomen. my iron was a little low too the last time.

    i found out my soluble CD14 results were not abnormal, suggesting that leaky gut is not my main problem. all previous leaky gut testing was negative as well.

    i guess i am "pure" CFS - this unknown virus is eating away at my body with nothing else i can treat. will be interesting to see if i am saved...

    xoxo
     
  20. boomer

    boomer Senior Member

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    Hello Daffodil,
    I am just wondering if you have been tested for lyme disease. You mentioned problems with nausea in the past and I know that is also associated with lyme. I recall you got sick after mono. I read somewhere (not sure how reliable a source) that lyme can cause mono too. Since it is estimated that between 30% and 40% of people with cfs actually have lyme i am thinking it could be a possibillity that a lot of people on this site haven't been diagnosed.
    All the best for 2012!
    Boomer
     

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