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Where can I find new recommendations for treating LC from Mayo?
I went to Mayo Rochester in July 2024. Dr. Hurt's opinion was that I do indeed have Long Covid. He gave me a list of treatment options but there was no clear, cut and dried, proven treatment. I've really tried everything and nothing is working anymore: Kefir, Vagal Nerve Stimulator, Low Dose Naltrexone and tons of supplements.
IS THERE ANY NEW RESEARCH FROM MAYO?
ARE THERE ANY NEW TREATMENTS AVAILABLE?
I'm in the middle of a prolonged (13 days) energy crash -- usually a day or two of rest -- helps get my energy back. It's not happening this time. HELP! I need to get back to work!
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You might ask your Dr about trying Modafinil. My caradiologist (who has studied LC and works with many patients who have it) suggested I try it. It has really helped a LOT! I have more energy and motivation. You still have to be careful not to overdo, you still have PEM, but it makes my day so much better and I get so muxch more done each day.
Hang in there!
@saraz Thank you Sara! I tried Modafinil but then started having heart arrhythmia. I have past history of AFib. I still have the script, so may try again when my heart settles down.
Posted by mistake and now I can’t find a way to delete the comment.
In my research I have seen hyperbaric oxygen therapy, non-invasive brain stimulation, talked about as possible treatments. Also, CoQ10 , luteolin, , NAC and ALA. Have you tried any of these?
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2 ReactionsThank you for your input.
Have not tried the treatments but will look into.
I’ve taken NAC and CoQ10. What is ALA?
@amyqk ALA is Alpha lipoic acid. it is thought to help with fatigue and cellular damage. some docs are crying 200 mg of ALA with 200 mg of CoQ10 to try to deal with severe fatigue. Please check with your Doc before trying these to make sure it doesn’t interfere with any of your other medication.
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1 Reaction@sjde53 I have tried CoQ10, NAC and ALA but couldn't tell any difference in my dizziness. I continue to take NAC however. There is some minimal science behind its use, so I will stick with it for a while.
@kentkemmerling1949 have you tried vestibular training? I saw a Doctor in California who treats astronauts for vertigo and he had me do vestibular training at home. It really helped with the dizziness and whenever it starts to return, I do the training again.
@amyqk
Be certain to start Modafinil at a very low dose, not more than 25 mg/day, and no caffeine. My daughter had Chronic Fatigue for about 18 years before she was put on Modafinil. Now she lives a very ordinary life - maybe more physically active than most her age. I don't know how much Modafinil she takes. After taking the 25 mg/day dose for a day or two you'll know if you can handle that much. I couldn't. She takes considerably more but less than 100 mg/day. My hunch is that most docs recommend too much, because 100 mg is the lowest dosage/pill the med comes in.