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How long do your PEM setbacks last?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Aerose91, Nov 3, 2013.

  1. vli

    vli

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    isn't it true that dr E will give you valcyte but not chia (maybe other dr E patients with such experience can chime in here)?
  2. Aerose91

    Aerose91 Senior Member

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    DR enlander did give me Valcyte. I'm not sure about DR chia
  3. vli

    vli

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    Yes aerose that's what i meant. U already know that valcyte can be obtained from dr E (what i suspected), but I'm pretty sure Chia will give you equilibrant.
  4. SOC

    SOC Back to work (easy, part-time work)

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    You don't need to see Dr Chia to get Equilibrant since it's OTC, so you can try Equilibrant while still seeing Dr Enlander. :)
  5. Aerose91

    Aerose91 Senior Member

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    Is it safe to take Equilibrant without informing my doctor? Or while I'm also on valcyte? I've always been the type that doesn't even take aspirin unless I absolutely have to, lol
  6. Tristen

    Tristen Senior Member

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    During the more severe periods, which have lasted for years at a time, my PEM would have delayed onset of 24-48 hours and would last up to 4 weeks. During better times, I would still have delayed responses but only 8-24 hours for onset and the PEM lasting maybe one day.

    My experience is also that causing the crashes (PEM), regardless of the severity, caused overall disease progression. Had I known 20 years ago what I know today, I 'm certain that I would never have progressed to a more severe chronic state lessening chances of returning to a mild disease.
    Little Bluestem and SOC like this.
  7. Aerose91

    Aerose91 Senior Member

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    Ain't this the truth. All of my PEM setbacks have been delayed 48-72 hours and have caused permanent disease progression. If only I had known to rest as much in the beginning but I didn't have any fatigue- I had no idea
  8. SOC

    SOC Back to work (easy, part-time work)

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    I dunno. :) I took Equilibrant after Valcyte. I'm not one to do multiple therapies that might interact, but I'd consider them together since one is an immune modulator and one is an antiviral which might be compatible. I'd ask Dr E and go with what he says.
  9. vli

    vli

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    That's interesting. I always thought of equilibrant as a "herbal antiviral", so i've never seen it as an immune modulator. i guess my suggestion was if aerose didn't know which one to go for (or whether to try both) he could read more about other ppl's experiences with either pill on here, so the decision still lies with him and not dependent on which doctor he's seeing.
  10. SOC

    SOC Back to work (easy, part-time work)

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    To be honest, I'm not sure how it exactly works against viruses. Is it Equilibrant's effect on the immune system that helps control viruses, or does it act directly on the virus? I suspect it's a little of both. The website only talks about the immune-modulating properties, but that doesn't mean it doesn't have other properties as well.

    While we all have to make treatment decisions for ourselves, I think it's wise to consult a knowledgeable ME/CFS doctor before mixing multiple products that might affect the same system. Some meds and supplements do not work at all well together and can sometimes be very harmful together. I prefer to consult a knowledgeable doc who is likely to know more than me about such interactions. 'Consult' being a critical word there. I don't take everything every doc tells me a face value anymore.
  11. gettinbetter

    gettinbetter

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    I used to get PEM a day after exercise and it lasted about a week
    Now I don't get it very much but when I do it's the next day

    I have been using antibiotics to kill off an infection and that has helped alot
    Valentijn likes this.
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Are you on LDN also?

    GG
  13. gettinbetter

    gettinbetter

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    No
    A combination of antibiotics and natural remedies
    The abx protocol is
    Doxicycline Azithromycine and Flagyl
  14. gettinbetter

    gettinbetter

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    No
    A combination of antibiotics and natural remedies
    The abx protocol is
    Doxicycline Azithromycine and Flagyl
  15. Aerose91

    Aerose91 Senior Member

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    Am i wrong or did i hear somewhere that valcyte also has immune modulating properties?

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