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Early stages of Valcyte - Should I go to Thanksgiving?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by PearlGirl26, Nov 25, 2013.

  1. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    My brother hosts a huge affair every year with 30-40 people. Is it worth exposing myself to a bunch of people (and their potential colds & flus) so early on in the Valcyte process? I'm trying to weigh the cost benefit of being around people/noises versus being depressed and alone on Thanksgiving. Of course, this will all be moot if my symptoms/side effects flare more than usual that day, but I would like to give my family a head's up either way.
    Last edited: Nov 25, 2013
    rosie26 likes this.
  2. maryb

    maryb iherb code TAK122

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    @PearlGirl26
    I'd probably use a nose spray to protect me from picking up anything airborne - you know the sort I mean? Stay a couple of hours, enjoy yourself but don't tire yourself out, and then leave - wash hands on returning home (of course I sound parnoid but honestly I'm not) this is the advice of a professor of viral medicine at a London Uni. And then of course don't worry:)
    PearlGirl26, rosie26 and heapsreal like this.
  3. brenda

    brenda Senior Member

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    I would add to that, a good gargle with salt water afterwards, and stripping off putting the clothes worn in a plastic bag and a shower. Can't be too careful.
    PearlGirl26, rosie26 and maryb like this.
  4. Xandoff

    Xandoff Michael

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    I am on my second trial of Valcyte and so I have some experience with it. I discontinued after 14 months, then after a year not taking it, I have been back on it for the last four months. I must say that I did not notice any less tolerance to colds ort anything but I haven't had a cold in eight years since my immune system flipped. We are all so different in our illness and how we respond to medicines. The art of living with this illness and accepting it are difficult. Try to keep your options open to Thanksgiving and give yourself permission to not attend or leave early should you feel the need. We can't forecast how we are going to feel in the future. Have a Happy Thanksgiving!
    PearlGirl26, minkeygirl and rosie26 like this.
  5. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    This sounds like sound advice, not paranoia. What kind of nose spray would you recommend?
  6. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    I went and it was noisy, but totally worth it. I told everyone I had a cold so it wasn't awkward when I didn't hug or shake hands with people (Mom's suggestion). I'm super tired right now. We'll see how I fare tomorrow, but I feel pretty good about it. My brother even made me GF stuffing and pumpkin pie. If course he used butter in the crust (organic natch), but nobody's perfect;)

    Feeling very thankful right now.
    maryb, aussie777 and leela like this.
  7. SOC

    SOC Moderator and Senior Member

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    Glad you had a good time and are having no serious consequences. :) Just curious though, why did you feel like you needed to say you had a cold? Couldn't you just have said you have ME/CFS which is an immune disorder? That's a plenty good enough reason not to expose yourself to germs? Or would that not have been accepted?
  8. PearlGirl26

    PearlGirl26 Living with CFS for years, recently diagnosed.

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    It's a fair question. Those who know about my condition, totally get it and asked how I was doing with genuine concern. Many of the people there weren't family and I didn't feel like getting into it with them, especially since I'm one of those people who appears fine, especially after caffeine and makeup, which I reserve for very special occasions. I also oddly look healthier (or at least younger) thanks to the weight I've gained in my face. The other thing to consider was my brother's kids who are too young to understand.

    Sometimes it's nice to pretend everything is normal. I used to be a very quick wit, the life of the party. Now I'm slower. People who don't know me from before just assume that's how I've always been. Plus, it's all I think and talk about 24/7. It's just nice to have a break from it.
    Dan_USAAZ and SOC like this.

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