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It'sME(Jaime) @exceedhergrasp1
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Replying to @follo_India. I'm not a dr and this is not med advice. Just things I've found work for me, personally, which may or may not work for you. Always be really careful starting something new b/c many #pwme are often medication sensitive. Start low & go slow! THREAD! (1/11)
Recently I found that selenium taken when I want to awaken is really helpful. Selenium has an effect on clock genes. At least in my case, this translates to: whenever I take it, that's when my body thinks it's time to wake up. Next morning, too! (2/11)…
I take a large dose of Coenzyme Q10. Tried a loading dose of CoQ10 & it stopped a crash in its tracks! Many take tiny 'heart health' doses or use poor-quality supplements that do zip. Looked up how much to take in MS and worked up to that dose. (3/11)
Lactoferrin activates NK cells & macrophages. Early on, I had trouble tolerating increased immune activation, so I stopped taking it. The next day I was FLATTENED. So I took half dose before bed, and energy went up again. Now I take full dose PM. (4/11)
I keep talking about Vit D3 b/c it's such an easy, cheap intervention and it dramatically shifted my fatigue. Fat-soluble so may take longer to work. Vit D deficiency is common in chronic disease & ours is no exception. Mine critically low @ onset. (5/11)
One of the first things I took that helped was Terry's Naturally Healthy Feet & Nerves. It's a B-vitamin blend & also has benfotiamine. I would not do a diff brand. Needed buckets of this at first (poor absorption/increased demand?) & was able to decrease as I improved. (6/11)
Finally, DHA (veggie). Fish oil for some reason exhausted me more, & eventually I figured out it was the EPA that my body didn't like. Vegan DHA gives me the cognitive benefits of fish oil w/o increased fatigue. (7/11)…
Finally, DIET. Get food intolerance testing & ditch everything you react to. Maybe food intolerances are ok for healthies -- but for us, every little bit of lowered inflammation helps. Some pts including me do best on uber-low carb, a la epilepsy. (8/11)
So, some quick reminders: despite all my research and official-looking links, I'm STILL not an MD. I got better albeit not well by finding advice like this online and investigating, taking nothing on faith. (9/11)
Start low & go slow. And don't try it all at once! You won't know what works and doesn't. Especially in a relapsing illness where you might feel well some days and poorly on others, this is a vital practice... use a symptom diary too, to help link cause & effect... (10/11)
Go off and on meds multiple times to be sure they are doing what you think they are doing, and give fat-soluble stuff long enough to work before giving up. Consider dosage (both increasing & decreasing), and brand, too. Good luck & godspeed! (11/11)
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