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Not Alone

Post-COVID Recovery & COVID-19 | Last Active: Feb 21 6:15pm | Replies (26)

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@theressa

Oh! There are MILLIONS of Americans with long covid. There are groups on reddit, twitter, facebook…People in Canada and Swizterland and Australia have long covid.
There is research on lc.
The hypotheses are that lc is caused by:
1) Sarscov2 stays in our bodies..and in places our immune can’t get to
2)Covid causes microclots in our blood- which causes symptoms
3)Our immune systems are damaged by covid- leading to lc
Yale is doing great research and has a wonderful lc clinic
I am hopeful that 2024 will see more trials..
Hiv antivirals are being tried with lc patients with success
Personally, based on my immunoglobulin, cyokine, leuketrine results- I think that covid continues to have a party in my fat cells and other places..I feel like I have covid everyday…plus the bone and nerve pain. My meds manage the pain…but that’s all. There are not any treatments for long covid…
At least not yet

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Replies to "Oh! There are MILLIONS of Americans with long covid. There are groups on reddit, twitter, facebook…People..."

I relate to all you've said and what everyone else here is saying as well. It is so frustrating to have to educated medical professional about Long Covid and how LC is affecting me and explaining WHY I need x test or y treatment protocol. Fortunately, I have a wonderful PMC who "gets" LC, understands and refers me out to myriad specialists for treatment. (With so many different LC symptoms - the NIH has documented over 200(?!) - and every person being different, it's no wonder there're no LC treatments yes. My eyes raised and I laughed about your comment about "party in my fat cells". Probably!! Fasting helped. One of my many LC symptoms was getting daily migraine-like headaches. After a 3(?) week fast 18 months agao they stopped (unexpectedly) and never came back. LC also gifted me nonstop, often excruciating, muscle and joint pain, pain, pain. Docs prescribed mega dosage levels pf ibuprofen, acetaminophen (Tylenol) and oxycodone that I ate like candy to keep the pain at bay. I completed a 6 week fast the middle of last month. Also, unexpectedly, the muscle and joint pain diminished so significantly that it feels almost non-existent. The pain meds have been untouched since the fast. Fingers crossed that that particular pain doesn't come back and I can plan to fast again in a few months. Now, back to making my LC follow up appts for my sleep study and the cardiologist, pulmonologist, gastroenterologist, ophthalmologist, etc., etc., etc.,..