1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
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  1. charlie1


    Early last summer I started having less energy than normal. Soon, bizarre neurological symptoms were experienced daily with frequent visits and overnight stays to the hospital. Things increasingly intensified from mid-summer to November before things settled a bit.

    All this time my weight was dropping and I was referred to an endocrinologist who did poor mans ttt'ing and decided I might have POTS. He referred me to a neurology hospital unit for one week where seizures, Parkinsons etc. were ruled out. Was then put on florinef to help raise my chronic low blood pressure and hopefully get some symptom relief while I waited for my TTT'ing date 4 months later.

    I have continued with the florinef but I continue to lose weight despite salting foods/drinking the required amount of liquids.(salt pills and 3 litres water/day) Blood pressure is averaging about 110 / 70 so I think the florinef is working, at least somewhat. But why would I lose weight instead of gain it? I'd increase my florinef even further so that I could get even a better bp recording and hopefully accomplish more fluid retention, but I don't want to risk increasing my migraine frequency. (2-3 x week)

    Any input is much appreciated.
    ...12 yrs ago was diagnosed with NMH and with POTS January 2013.
  2. Kati

    Kati Patient in training

    With ME, some lose weight, some gain weight. It seems to be a recurring theme. I would rather be a loser, but no one asked for my opinion.
    Valentijn likes this.
  3. WillowJ

    WillowJ Senior Member

    WA, USA
    increasing blood volume would hopefully lead to increasing weight (especially if you're one of us who need that)

    As Kati said, some lose weight and some gain. Losing weight can be scary. It's uncomfortable and unhealthy. I haven't figured out what to do about it yet. If anybody else knows, please let me know.
  4. justy

    justy Senior Member

    When i fisrt relapsed 4 years ago i lost a LOT of weight - at first that was ok as i had a few pounds to lose, then it became scary as i tried to make it stop by eating more, and eating more protein-i carried on losing weight.
    4 years later, i have regained ALL the weight PLUS another two stone which has made me officially overweight and now i can not shift even one pound of it - no matter what i do.

    I dont have a POTS diagnosis, but i did have a lot of anxiety issues in the early days of the relapse - which may have expalined the weight loss initially.
    Anecdotally, it looks to me like the gainers tend to women and the losers (of weight) tend to be men. But i know thats not true across the board, and of course i have had both.

    All the best, Justy.
  5. charlie1


    willow - I wear both compression socks and body garments as well as adequately ingest salt and plenty of fluids but not sure how much it helps with symptoms, certainly not retaining much fluid. (the dysautonomia neurologist made the assumption I have low blood volume but I wasn't tested.).

    justy - I'm a female loser ;) I don't want to be overweight but the problem is I was already slim and didn't need to lose more. I am starting to resemble Gumby and/or his sidekick Pokey....

    I read that going gluten-free could help with the CFS symptoms (not diagnosed) and possibly the POTS so since last summer, I restricted myself to no gluten. After 8 months, I'm not exactly feeling chipper so not sure how much the gluten restriction has helped, perhaps it even contributed to the weight loss?

    Re: Dr. Grubb, florinef is not indicated for H Pots, only PD Pots. I will continue with the florinef but I sometimes wonder if perhaps I have hyperadrenergic Pots as I have some of the symptoms: allergies, chronic daily stuffy nose, a significant increase in migraine frequency, and not much success with the florinef (other than raised my BP somewhat). However, I don't have the crazy high pulses often seen in HP. I will spike ~ 40-60 bpm upon standing but have low resting hr.
    I don't care what my dx is, I just want the right meds to allow me getting out of this house!
    ahimsa likes this.

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