this post was submitted on 16 Nov 2024
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Small rant incoming:
I'm actually still stuck inside more than in the Pandemic. Essential worker so I still went outside daily until i never got my energy back after having covid for the 5th? time.
About 3 years of doctors not really knowing how to treat it and encouraging me to keep trying what i could each day, which led to me basically destroying my body, until i got one of my countries leading experts who immediately told me to take bed rest the second i feel tired.
Since my immune system is basically gone i got a bunch of other illnesses some of which will probably never go away since the meds only alleviate the symptoms.
Upside is that I've been trialing a bunch of expirimental treatments for the specialised clinic that is opening soon, some of which had small but immediate effects. So at least those that will get diagnosed in the future don't need to wait as long hopefully.
I got ME/CFS (closely related to long COVID) that first started in early 2020, so this is very relatable. As everyone was going back to normal I was getting worse. Do you mind if I ask what had a good effect? The only thing I've found that helps (other than rest and pacing) is nicotine patches for the brain fog.
Currently seeing some decent effects from low dose naltrexon, although it seems to shift my energy more than it increases it. The further I'm from having taken my daily (evening) dose the better i feel, but in the mornings I'm extra tired and can't really focus my eyesight.
But it's hard to separate the side effects from the multiple other treatments I'm building the dosages for.
Ah yeah, I've heard some promising things about LDN. My doctor won't prescribe it for me though. There's apparently a different version of it that's being researched but it's early days. Good luck with all.
I'm glad to hear you live in a country where you can get more specialized support! I hope the new treatments pan out
I got really lucky to get the right expert as my new doctor, since the upcoming clinic would only treat about 1000 patients a year with an estimated 60k waiting for treatment.