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  • Treatments Helpful for Me

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    Old 05-03-2015, 01:20 AM   #1
    Kritler
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    Cool Treatments Helpful for Me

    Hello fellow CFS/ME/SEID/Fibromyalgia peeps,

    I've lived with CFS for just over 3 years now and have tried dozens of treatments with the assistance of several traditional and integrative (alternative) doctors.

    TRIAL TREATMENTS
    VALTREX - This is an antiviral I started this 2 weeks ago so it's too early to say on this one.

    REGULAR TREATMENTS (Helpful)
    These have been a part of my regular regimen for a long period.
    RITALIN - This has been a God send. I took 5mg-10mg AM and 5mg-10mg PM daily for months with great success. Then decided to taper off and continue to take only on an as-needed basis.
    CONSERVE ENERGY - Luckily, I'm now able to work full time. But I still am very cautious about my energy expenditure. If I push myself too hard, I will crash.
    CONSISTENT BEDTIME ROUTINE - This one is tough as I'm a night owl. But I have found that having a sleepytime tea at 9pm, then going to bed by 10pm and waking at 7am consistently helps quite a bit.
    COQ10 - Has kept my cholesterol in check and believe it generally helps reduce inflammation
    LOW DOS NALTREXONE - This reduces the number of episodes. It wasn't until I tried stopping this, twice, that I realized it's value for me.
    XYREM - I've never had a problem falling asleep. But my sleep doctor gave me this to increase my slow wave sleep as it was extremely low; but it's not the easiest to obtain as it's highly controlled and potentially dangerous if not taken correctly. I no longer take this regularly as the melatonin and sleepytime tea seem to help enough. But it still helps when I'm in a valley. I do seem to have more joint/muscle pain when I don't take it though.
    MELATONIN - I take 1.5mg nightly a couple of hours before I go to bed.
    ARMOUR THYROID - Yep, Hashimoto's here. Switching from Synthroid was not night-and-day difference, but a marked improvement.
    B12 INJECTIONS - Been doing these weekly for 6 months now and they seem to help a little.
    LOW/NO DAIRY - Had food intolerance test and this was at the top.
    LOW BREADS - Probably should be gluten free due to Hashimoto's, but keeping breads and pastas to a minimum has definitely helped.
    ASHWAGHANDA - I actually don't take this any more, but I put it in this category as it was absolutely helpful for getting through the initial depression of coming to terms with my new found disabled; CFS. This helped much better than trials of Zoloft and Wellbutrin; with the bonus that coming off of it did not involve any withdrawals.
    RIFAXAMIN - Was given this to address SIBO. Although I don't have serious stomach symptoms, I had tested positive for SIBO and Lactose Intolerance. After taking for a month, I had 5-6 weeks of nearly no symptoms! I actually thought for a short period this was my cure until I hit another valley.
    GREEN TEA - I try to have 2-3 cups a day and it seems to help. If I get out of the habit my symptoms tend to worsen.
    PROBIOTICS

    DISCONTINUED TREATMENTS (Not Helpful)
    ADDERALL/VYVANSE - (Extended and Instant) - Was helpful at first. But I now realize these are too potent for me and my body builds a tolerance to it too quickly. Taking a break on the weekend helped regain potency for Monday, but I was useless on Sat/Suns.
    TESTOSTERONE INJECTIONS - CFS often comes with hormonal imbalances and that was certainly the case for me. Creams didn't work at all. And although injections got my lab work back up, they didn't make me feel any better. So I stopped them to avoid a lifetime of injections.
    HIGH DOSE MULTIVITAMINS - I tried several and they all made me nauseated. I even tried to mimick the Synergy Trial, after speaking with the organizers to identify the regimen. Anyway, I gave up on mulits.
    D-RIBOSE I wanted this to help, but after months of trying it really didn't seem to do much of anything.

    .

    Last edited by Administrator; 08-10-2016 at 08:40 PM.

     
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    Old 11-01-2015, 01:11 PM   #2
    airsleeper
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    re: Treatments Helpful for Me

    Wow. Your treatments are very much like mine. I haven't tried the tea thing though, so that is next on my list of things to try. Thanks for the tip. I will say that, like you, Ritalin is my friend! I take 54mg ER plus a 20mg in mid morning and another 20mg in mid afternoon. Without them I can't do much of anything. My doc has discussed Xyrem, but decided otherwise after consulting with his partners. It's hopeful that you are having success with similar treatments as me. This makes me more optimistic. Thanks!

     
    Old 11-29-2015, 09:27 PM   #3
    Zephyrae13
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    re: Treatments Helpful for Me

    Strange, my treatments are pretty similar

    Green Tea: Seems to help with the inflammation, helps to level out my symptoms. (I love coffee but it's just too hard on my system...)

    Vyvanse: I could not live without this. On days I don't take it, I'm pretty useless.

    Escitalopram: Anti anxiety, helps keep my stress down, and hence forth
    symptoms

    Lunesta: Also a must, makes it so that I actually wake up refreshed, not still tired and nauseated. keeps me in REM when I sleep.

    Black cohosh: a godsend on my periods, interacts hormonally to curb the fatigue, pain and nausea
    Vitex: " "

    ANTIOXIDANTS: Berries, Berries, Berries: the more antioxidants I eat the better I feel

    Last edited by Zephyrae13; 11-29-2015 at 09:32 PM. Reason: forgot to add in some stuff!

     
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