Recent content by bluegnu | ProHealth Fibromyalgia, ME/CFS and Lyme Disease Forums

Recent content by bluegnu

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    How many are on CPAP machine? Helping?

    Best of luck to you! I did the sleep study - got the Xyrem, and laid awake, feeling like I could move, for 3 hours after I took it. It was very scary - had there been a fire I wouldn't have been able to move. I didn't work for me - I tried it for more than a week. It also caused me to be...
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    Searching for cure for ME/FM!

    All - not sure if you are aware - but the Whittemore Peterson Institute (WPI) is doing a raffle for a Harley Davidson. (WPI are the ones who connected XMRV potentially to ME.) They are only selling 500 raffle tickets and they are $100 each. Perhaps this is a really solid way to get our friends...
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    LDN for CFS or only helps with FM?

    Hi - me again - LDN is keeping me awake at night, so I'm going to switch to day, I think. I can't afford to lose any more sleep. My question is - has LDN helped anyone with CFS/ME? I am very fortunate to not have pain. Most of what I've read seems to imply that it helps with FM but haven't heard...
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    Low Dose Naltrexone?

    Has anyone tried LDN for CFS/ME? I do not have FM. I started with 2mg last night and didn't sleep a wink - had to triple my seroquel dose to get to sleep. Has anyone had good experiences with LDN? Weight gain/loss? Energy improvement? Thank you!
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    Sodium Oxybate - active ingredient in XYREM - for FM...Thoughts?

    I went through trials and was approved for Zyrem. I tried it for a week and it kept me awake and gave me panic attacks during the day. I tried 4.5 - the highest dose recommended for me - and I laid there having hallucinations and unable to move, it was terrifying. I am back on seroquel for sleep...
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    Has anyone done IVIG treatments? (Intra Venous Immune Globulin)

    I have very low IG numbers, and I've had an immunologist tell me that IVIG treatments can help me significantly. However, after a very, very bad reaction to Vitamin C IV treatments, I'm nervous. (Not to mention that Cigna hasn't approved despite 3 attempts...) Just wondering if anyone has any...
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    Anyone using Liquid Vitamin D-3?

    I use a Vitamin D-3 liquid tincture. It's not the same brand as is sold on Pro-health. But, I can tell you, it has very little taste at all - just tastes "oily". Hope that helps.
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    Any Suggestions on How to Stop my Sugar Cravings?

    Are my nemisis. I believe my body is craving sugar as an energy boost to help me make it through the day. It's really hard. After years of trying to do it on my own, my doctor has finally given me glucophage - it's a diabetes treatment, but I take it in a very low dose and it helps tremendously...
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    I'm terrified I'm going to lose everything.

    Thank you so very much - all of you - for your replies. I am really working on changing my thinking. The love from people I don't even know is humbling and astounding. I appreciate all who posted and are thinking of me. And after 12 years of hiding my illness and doing it on my own, this support...
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    I'm terrified I'm going to lose everything.

    I am having a horrible relapse based on two alternative treatments I tried - Vitamin C IVs and UVBI. The have made me sicker than I was when I first got sick, 12 years ago. I am terrified I am going to lose my husband, my job, and the child we are in the process of adopting - not to mention our...
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    Feel like a bad person - but I'm envious!!

    I have to say - October, although my favorite month in Colorado, always makes me feel a bit sad and downright envious. There is SO much support for Breast Cancer Awareness - and THANK GOD! What an amazing thing that we're helping to close the door on this disease. But, at the same time - when...
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    hidden gluten?

    It's in a lot of dressings, marinades, sauces, etc. It's EVERYWHERE. The barley malt used to trick me - many places sell rice krispie treats as if they're gluten free - but they're usually not.
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    CFS Doctor in Denver/Boulder Colorado?

    Hi Does anyone of know a good internist (MD) in Denver/Boulder Colorado for CFS? I've checked the "good docs" list, but the ones in my area either don't take my insurance or aren't MDs. If anyone has someone they like, I'd love the info. Thanks
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    Help! Vitamin C IV made me WORSE. Devastated.

    Sorry - I don't know what his message boards are. New to seeking help around my CFS - although very NOT new to CFS :) would love to read the post if someone can tell me how to search for it. Cheers, And thank you! Anne
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    Help! Vitamin C IV made me WORSE. Devastated.

    I hoped for the first month afterwards it was a Hex reaction - but it seems to be something more - like it threw my body for a loop - more than just die off. My last IV was early August. I appreciate your response. After 12 years of dealing with this in isolation, it's nice to hear kinds words.