Discussion in 'Fibromyalgia Main Forum' started by djreg5, Sep 17, 2006.

  1. djreg5

    djreg5 New Member

    Hi! I just searched the posts for AHCC and found very little. Was wondering what experiences others have had with it.

    I was diagnosed with CFS 20 years ago. The first 14 of those years I was pretty much able to keep it in check with LEM.

    Then CFIDS suggested I switch to AHCC , 3 capsules per week.

    Normal dosage is 6/day, so 3/week is quite remarkable, and it has been effective except for a couple of relatively mild and brief relapses per year.

    About 4 weeks ago I again relapsed, mostly a severe ear ache and some mild fatigue.

    At that point I increased my AHCC to 3/day. This relapse seems to have begun after a Bowen Treatment in which the therapist manipulated the left side of my neck between my ear and shoulder.

    That's the only side I have ever gotten a CFS ear ache on, and it hurt on that left side when she adjusted it but not on the right side.

    I really think that manipulation some way stirred up my CFS.

    Since then I read that Olive Leaf Extract is very successful as an antiviral, antivfungal, antibacterial.

    So 2 weeks ago I started taking 4/day and gradually increased to 8/day.

    I did HERX with a severe headache the first day followed by diarreah the 2nd. The rest of that week I had no symptoms and my CFS relapse seemed better.

    I decreased my AHCC to 2/day since the relapse was better.

    Thinking that perhaps the OLE was killing off the fungus or virus that causes my CFS, I gradually doubled my OLE dosage, having read that for people with CFS who had had it long term, that large does is necessary.

    As a result my relapse returned. I then quit taking the OLE last Thursday, but the relapse remains and the ear ache is quite severe.

    Today I have increased the AHCC to 6/day, since that is the normal dosage.

    Several years ago, at one point the LEM stopped working and CFIDS suggested I quit taking it altogether for a month, then start taking it again, and that did cause it to kick back in, start working again, and it didn't fail after that.

    I'm wondering if I should be doing the same with the AHCC - that is, dropping it for a month, then start taking it again.

    Or is the increased dosage a better solution?

    I've also experienced anxiety attacks with my relapses the past few years, and yesterday they were quite severe.

    I'm taking 6 St. John's Wort/day and 9 Valerian/day for the anxiety, and it seems to help somewhat.

    As far as the earache, nothing helps! I've been seen my an EENT, but my GP said there is fluid behind the ear drum.

    I've tried alleve, tylenol, iburofen, claritan, benedril, heat - nothing helps.

    Sorry this is so long. Hope someone out there has had some experience with AHCC!

    I've pretty much battled this (and pretty successfully) on my own for 20 years.

    Would love to find a Dr. that also uses alt med to run some tests and help me. I'm in the midwest!

    Thanks so much!

    [This Message was Edited on 09/17/2006]
    [This Message was Edited on 09/17/2006]
  2. sues1

    sues1 New Member

    I see that you are fairly recent, welcome to our place. Also you might not be aware that many of us have "Fibro-eyes".

    Need many breaks (paragraphs) as all will run together and it is hard for us to read. I could not fully read your post.

    If you go back and edit it you can separate it out more for others to read.

    I also wanted to post so your question will be bumped up some for others to read.

    Good Luck..............Blessings..........Susan
  3. cherylsue

    cherylsue Member

    What is LEM? I'd be interested in that. I think AHCC is mushrooms like ImmPower?

    Olive Leaf works best for me with colds. I like ProBoost for infections and I am on that now 3 packs a day. That helps over time to suppress viral infections.

    I guess it depends on what is triggering your CFS as to the best remedy.

    Good lick.

  4. djreg5

    djreg5 New Member

    LEM is from the shitake mushroom. AHCC is a hybrid mushroom - more powerful than LEM by far.

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