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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 Moderator and Senior Member

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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.
  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 Moderator and Senior Member

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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 Moderator and Senior Member

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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. Aerose91

    Aerose91 Senior Member

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    Am i wrong or did i hear somewhere that valcyte also has immune modulating properties?
  15. My PEM symptoms seem to start about 2-4 hours after any exertion, and peak around the 24 hour mark. I usually feel a marked improvement 1 or 2 days after that... the fog lifts. It lasts about 3-4 days maximum.
  16. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Ditto to that!
    Mij and Sushi like this.
  17. jann1033

    jann1033 Senior Member

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    Not from PEM, I usually get over that but from a flare I never get it all back. That's one reason I figured it was better to stay in my envelope. I never know when PEM will lead to a flare and ill lose something else.
    Just a thought but have u changed a med? I ask because I never had a problem with mental illness til a goofball Dr. kept nagging me to try cymbalta for my pain. It totally messed up my brain and created a bad flare but as soon as I stopped it my brain went back to normal, physically never went back 100% but mentally did.
  18. Aerose91

    Aerose91 Senior Member

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    @jann1033

    Nope, not on any meds and wasn't prior. This hit me the instant the ME came on and has only gotten worse since the onset
  19. jann1033

    jann1033 Senior Member

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    I remember when I first got sick it felt like my brain was an empty white box, more recently my "brain" problems are related to garbled speech, basically no memory, especially associated with numbers, not knowing objects names(not the routine tip if the tongue, more like if someone asked me a word for something in a language I don't speak so no idea lol, lack of focus, inability to multitask, just not hearing things. Typing is a real problem.
    Some things come and go, sometimes out of the blue. They are worse the more tired I am but except for speech usually there to a degree. I don't really think they have gotten progressively worse, they have been bad since the get go but I haven't had the white box thing for decades.
    I've never felt apathetic or anything similar and oddly some things, like spacial recognition tests , I have improved. I think I probably have created new pathways to get around the things I can't do anymore
    Lol I realized in the last post said my brain is normal then list anything but normal things. The cymbal ta made me suicidal( I mean had it all planned not just considered it) and sleepy. For the last 20 yes or so I've had insomnia except at the start of a bad flare but then slept 24/7.I think it actually caused mdd in me
    Last edited: May 20, 2014
  20. PNR2008

    PNR2008 Senior Member

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    I hurt the next day and usually worse the second day, both days I'm bed bound. My stress level has been worse the last 5years and it reflects in my energy. Pacing doesn't seem to work for me because I think I should be doing nothing but living alone makes that impossible.

    Also staying in bed makes me feel like I will never get out so I push myself with some small but necessary task and then the adreneline makes me feel I can do more, it's almost like a high so I do more go to bed on a heating pad happy then wake up like a zombie for at least 2 days.

    If I'm lucky I'll rest and get to my regular functioning which is bad but I can get worse.

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