The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Intense Flare

Discussion in 'Lyme Disease and Co-Infections' started by the_phscale, Feb 12, 2018.

  1. the_phscale


    Southern California
    Folks, I am having a terrible flare-up.

    I met with my LLMD's PA in mid-January to discuss how to keep making progress, since I had hit a plateau and wasn't seeing much change anymore. She started me on a herbal supplement called Cordyceps, one capsule a day, and about three days after I started it I saw some incredible results! I felt better than I have in years: full of energy, no pain, in a great mood, I was pretty much on top of the world for a week-two weeks.

    For about a week now, however, I've been having a really bad flare-up of all my old symptoms. Body aches and joint pain, especially at night, a little insomnia, pretty intense fatigue especially with exertion, even a weird menstrual cycle despite being on continuous birth control. I feel run down and strung out, not to mention disappointed to have taken a big step forwards and then two steps back.

    I thought that the flare was prompted by over-doing the activity because I was feeling so good. I did have a moderately active week just before the flare that included several hours of walking around with my roommate and then on a date. But I would have thought that that would have faded by now, as I've had several days of nearly-full bedrest. Could this be connected to the cordyceps? Has anyone experienced something similar or have an idea of the cause? How do y'all pull yourselves out of a flare and back into a stable routine?
  2. Wishful

    Wishful Senior Member

    Feeling better for some reason, and then overdoing activities and suffering for it afterwards, seems to be common for ME victims. Many of us just suffer temporary (day or so) PEM, but others suffer PEM for longer. Your flare-up might go away on its own. I've had flare-ups that have gone away on their own; others had more lingering effects.

    Another fact of ME is that for many of us, some drugs and supplements may provide relief at first, but then simply stop working. Prednisone was miraculous for me, the first two times I tried it. It never had any effect after that. Your Cordyceps may have helped at first (unless something else did it coincidentally), but that's no guarantee that it will continue to work. My advice is to not invest in large quantities of a drug/supplement until you have had it work reliably for at least several months.

    It's also possible that the supplement shifted some biochemical balance favourably, but then the body's feedback mechanisms shifted in response, cancelling out the benefit. If so, they should shift back after you stop taking the supplement, though it might take some time. I had this happen with T2 (thyroid supplement): it helped at first, but then stopped having a benefit, and then when I stopped taking it, my symptoms got worse for about the same duration and intensity as the benefit. What works for me now is to take the T2 once every 21 days. You might try going off the Cordyceps for a while (week or two?) and then trying it for a few days and then stopping again. There might be a routine that will work for you.

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