Post Long Covid- tests or specialists

Posted by boyd2027 @boyd2027, Oct 18 3:55pm

Hi everyone,
I'm glad I found this group. I was recently diagnosed with long Covid after four years of symptoms (2022-2026) that doctors couldn't explain. It started about six months after I had Covid and my two Pfizer vaccines. At first I couldn't walk, and then came neurological problems, migraines, body-wide pain, and very low energy. I've also had tingling pain from head to toe, swelling under my scalp, and ear and facial pain, mostly on the side where I got the vaccine.

I just saw a rheumatologist who ran blood work, and I have a follow-up on October 29. Has anyone had a similar path? I'd love to hear what helped you, what tests or specialists were worth pursuing, and how you got through the years of not having answers.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

bettinadr | @bettinadr | Oct 19 7:40am

Have you had the blood test SAR COV 2 AB ? I tested positive and my number was very high. My story sounds similar to yours, but not quite as bad. I could always walk. I am sorry this happened to you!! I go to dr Edward Balbona in Jacksonville. I am on about 8 supplements and 1 prescription drug for a 6 month treatment plan. I am only 2 weeks into it. I am hopeful.

djg3012 | @djg3012 | Oct 19 7:53am

My LC progressed much like yours-6 months after virus, on my 80th birthday with about 75 people invited for my celebration, I had to call it off.I was so sick with severe anxiety,and severe fatigue. Been that way ever since -only taking trial & error meds for the anxiety,And inflammation is bad all over. Several blood tests and heart tests and annual Covid vaccines later, we don't know how to treat this since I haven't been diagnosed-BUT I will tell you one thing, it has been a full year since I had a covid vaccine and except for my loss of taste, I feel a bit better-not a lot ;but I will not do the covid vaccine this year and see if I do feel even better. Have to be careful but I think some of this virus is still in our bodies anyway !

jmwest248 | @jmwest248 | Oct 20 10:49am

In reply to @bettinadr "Have you had the blood test SAR COV 2 AB ? I tested positive and my..." + (show)

@bettinadr
Would you please share the supplements and prescription med? I was treated in a similar way but the cost was about 400.00/month which I couldn't afford. I would sure appreciate it. It's been 4 years with a bout of breast cancer in there which complicated things.

thedreamingtree | @thedreamingtree | 4 days ago

I highly recommend the Columbia Long COVID clinic in NYC after having been to a few others.

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