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Vaclyte best protocol ?!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Omar88, Feb 14, 2013.

  1. vamah

    vamah Senior Member

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    SOC: That's interesting because my symptoms were only neurological for a long time, so I'm sure the virus is seriously in my brain. Which means the Montoya protocol is a good idea for me.

    Omar: That's nonsense about HHV-6. Everyone has it, but it can reactivate and you should have your level tested.
     
  2. SOC

    SOC Senior Member

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    That's great! About the right treatment, not the neurological infection. ;) Sounds like you have a good doc on your side. Wish we all had that.
    Agreed. That's nonsense about HHV-6. It works like the other herpesviruses your doc is treating, Omar. However, if your doc is using Valcyte to treat CMV then it should be simultaneously be treating any HHV-6 you have, so it may not matter significantly if he "believes in" chronic HHV-6 or not.
     
    Omar88 likes this.
  3. RUkiddingME

    RUkiddingME Senior Member

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    Hi vamah, good luck! I have also started at the higher dose with no problems 7 weeks ago. I have been blogging my experience on here called Valcyte 2013 if it helps. :)
     
  4. vamah

    vamah Senior Member

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    I have a friend who says that what it takes to be a good doctor is compassion and a prescription pad. I do have a good doc now -- one who will admit when he is skeptical or doesn't know about something, but is willing to learn and to try things as long as he feels they will not do me any harm. I struggled for a while to get Kaiser doctors -- who think they know everything already and had me diagnosed as a drug-seeking hypochondriac 5 minutes after I met them -- to listen to me and finally decided to pay out of my own pocket for a real doctor until I can switch insurance later this year. I'm fortunate that I can afford to do this.
     
  5. Omar88

    Omar88 Senior Member

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    I can see that you are taking LDN while i cant get it in this country, where do you get that from ?
     
  6. Omar88

    Omar88 Senior Member

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    My first day on Valcyte :) wish me luck guys
     
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  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    good luck, hang on for the ride.

    cheers!!
     
  8. SOC

    SOC Senior Member

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    Good luck! Keep us current on how you're doing.
     
  9. vamah

    vamah Senior Member

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    Good luck. I'm on day four -- feeling tired and achey, but ok. Be sure to get plenty of rest and take vitamin B-50 and fish oil to help your immune system. Chlorella can help get toxins out of your system. Keep us posted on your progress.
     
    Marianarchy likes this.
  10. RUkiddingME

    RUkiddingME Senior Member

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    Best of luck Omar88 with the Valcyte and keep us posted. About the LDN. My ME/CFS doctor in Canada prescribes for me, it then has to be prepared by a compounding pharmacy. Before LDN I was completely bed ridden for 9 months and had to go down the stairs in my house on my bum to get to appointments. It loosened my muscles and helped with the weakness plus I was able to nap in the daytime for the first time since the onset of my illness. It has been a miracle drug for me. There is lots of info about LDN online, I hope you can get your hands on it.
     
  11. vamah

    vamah Senior Member

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    I'm wondering how you are doing. You started valcyte just a few days after I did and I am just starting to not feel like total crap. Hope you are hanging in there. Remember that a bad die off reaction is good -- it means you are killing something seriously bad.
     
  12. Omar88

    Omar88 Senior Member

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    Am feeling bad and i have some strong symptoms
     
  13. vamah

    vamah Senior Member

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    Don't worry about taking a day off or a single dose off if it becomes terrible. I took my morning dose off yesterday because I had something I HAD to get done and was feeling very shakey (couldn't get my fingers to work correctly!!!).
    Felt better by the afternoon and still feeling better after taking meds last night and this morning. A short break won't set back treatment and lets you body clear out some of the toxins in your bloodstream.
     
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  14. vli

    vli

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    Don't mean to sound dense but this is the protocol I assume you stuck to in the two years you did it?

    Also did I recall correctly that you didn't feel any changes at all in the first six mos? Thx!
     
  15. vli

    vli

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    SOC Thx for this, what's interesting tho is here: http://hhv-6foundation.org/clinicians/hhv-6-treatment It says valcyte is the most likely drug to get into the brain! I wonder if this might be why say, ppl report fewer SEs fr vistide BUT at the same time, their brain fog might persist more than on val because the vis never got to their brains???
     
  16. SOC

    SOC Senior Member

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    Yep, that's the protocol we used for the whole time. It was something like 6 months before I had any noticeable improvement. I also had the IRIS-like reaction, so it may be that it took 6 months for my immune system to get working again and start going after the HHV-6.
     
  17. SOC

    SOC Senior Member

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    Certainly possible, but I don't really know. What I understood from what I was told is that Valcyte does get through the BBB, but not in large amounts. But I'm not a medical person, so I could have misunderstood.
     
  18. Omar88

    Omar88 Senior Member

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    I went down from 1800 mg daily to 900 mg , i felt sick in the first week after changing the dose but am better now , i can go through my day and more stuff thanks god ! i still have 4 months still on this dose then i will go to 450 mg for other three months ,,

    I need your prayers guys cause am trying my best and this is the only thing i could use right !!

    Am on other supplements trying to boost my immune system to take care of this illness when i finish my medicine trial !!

    Every month i take some antibiotic cause i get an infection in my throat and while this infection starts i feel so bad until i finish my course and am not sure why i get this much of bacterial infections i really need an answer for that !!
     
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  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Omar i sort of feel similar to u with the bacterial infections although my issues are with sinusitis. I feel like maybe my immune system isnt strong enough to keep bacterial infections away, then will my immune system be strong enough to keep cmv down once off valcyte??? Im using immunovir and my nk numbers have gone up some but i now cant get nk function test which is what we need to improve.
     
  20. Omar88

    Omar88 Senior Member

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    Am not sure but i think the same :)

    The problem is i couldnt run new tests to chick my CD4,CD8 and the other immune biomarkers beside i didnt find any lab in this country so i could run NK !!

    Am stock with WBC account only until i find better lab or hospital
     
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