The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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  1. BadBadBear

    BadBadBear Senior Member

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    Rocky Mountains
    I started a mestonin trial, but it's not looking good at the onset.

    Presently I have air hunger issues similar to @Webdog, OI/NMH issues, bradycardia, palps, muscle weakness, afternoon low grade fevers, and I'm sure I don't need to say constant fatigue. I currently tolerate some activity (slow walking intensity) as long as I can get some hours of recliner rest during the day.

    Midodrine didn't help low BP, but did seem to help air hunger. I tapered off of it to try mestonin, and find air hunger is worse when I take mestonin, and my BP has dropped a bit lower. My diastolic is dropping into the 40's which feels awful. I started at a quarter tab mestonin 3x per day, and moving to a half tab made things worse, so I suspect I will wash out of my trial soon.

    Will probably go back to midodrine and experiment a bit more with a super low dose of yohimbe. Talked to my doc and may try LDN next. I didn't chase symptoms too much before, but I'm getting worse and weaker and am scared. :(
     
  2. bombsh3ll

    bombsh3ll Senior Member

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    I'm sorry it didn't help you either. I think it only has a significant positive effect in a small number of people. I wonder if the low BP is more related to having come off midodrine than being caused by mestinon. Have you ever tried fludrocortisone? I've had a few short trials of this and am currently trying it again, starting low in addition to my licorice root.

    Midodrine raised my BP (which is not low to start with but I have severe OI/POTS) but didn't make me feel better.

    I also just placed an order for some LDN recently so am looking forward to trying this too!
     
  3. BadBadBear

    BadBadBear Senior Member

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    Rocky Mountains
    Hi Bombshell, I had gone completely off of Mido and was doing just fine - if anything BP had been up just a tiny titch but I am starting to think hormonal fluctuation may be causing this and giving me occasional hope :) which is then dashed on the rocks by a return to 'normal' low. I am trying to build a spreadsheet to track trends, and so far its mostly a number jumble.

    I was put on Florinef for some months by a cardiologist and it didn't raise my numbers, also really lost a lot of potassium on it. It was hard for me to get off of (I had bad shakes even with careful tapering) so it is on my avoid list. I am taking licorice as well as it seems to cause less issues for me than Florinef.

    I hope LDN works well for you. I have never thought I had much inflammation, so it will be interesting to see if it works well.

    It seems like anything that makes my systolic number rise makes my diastolic number fall, which is not helpful. I had gotten mostly off of T3 earlier this year when I was trying to assess whether it was causing the daily afternoon fevers (it didn't), so I am thinking I will add that back in as it may help overall and bolster my diastolic numbers. As well, my T4 was low in my most recent bloodwork, maybe thyroid dysfunction is part of the overall decline.
     
  4. hamsterman

    hamsterman Senior Member

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    Los Angeles
    Just wondering if anyone here is taking Mestinon and LDN? I honestly don't understand how either really works... but LDN definitely helps me. I was considering starting Mestinon... but I just want to make sure its safe... and I'm not overdoing it by taking both at the same time.
     

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