COVID test negative: How can I be sure my symptoms are long COVID?

Thanks for your reply. Yes I’ve being seeing doctors but no diagnostic and it has been 4 months now. I cannot work properly and cannot live right. I will definitely consider a Post Covid Care Clinic. But not sure how to find one.

I can help with that. Mayo Clinic has a Post COVID Care Clinic (PCCC). You can read more about it here: https://connect.mayoclinic.org/blog/post-covid-recovery/tab/next-steps/

There are more and more PCCCs popping up all over the country. Survivor Corps has a list of Post-Covid Care Centers here:
https://www.survivorcorps.com/pccc

To help manage your symptoms in the meantime and get you on the road to recovery, I suggest connecting with other members in the discussions, like these ones:

- Post-COVID Syndrome is real https://connect.mayoclinic.org/discussion/pcs-is-real/
- Post Covid Stretching https://connect.mayoclinic.org/discussion/post-covid-stretching/
- What to expect at Mayo Clinic's Post COVID Treatment Program? https://connect.mayoclinic.org/discussion/post-covid-treatment-program/

What symptom are you finding the most challenging today?

I get it!!! I believe I had Covid in April and tested negative. I got the JJ Vaccine about a month later. 5 days after I felt horrible and the symptoms began. I waited about three weeks before going to the Dr. thinking I would begin to feel better. It was that day that the JJ was "paused". I continue to have symptoms, shortness of breath, fatigue, sweating, brain fog, headache, pretty severe stomach pain with diarrhea, I get lightheaded and dizzy, joint pain, and after about 30 minutes doing anything, sometimes less, I have to sit down and can barely move, sometimes for hours. I have had many medical tests because I insist to my Dr. that something is wrong. Last week I was diagnosed with a kidney injury and stage 3B kidney disease. He said, "Something happened between October and April", because my blood work numbers were good in October and in April they were in the mid 30's. I believe I am experiencing long Covid. When I mentioned this to my Dr. a month or so ago he said there is no way to be sure. I will say it again when I go for my next visit and to get more test result. I am so frustrated...

Ameed, regardless of the cause, it sounds like you are dealing with chronic kidney disease. You’ll want to learn about the condition and possibly consider life style changes to avoid progressing to stage 4 and 5 CKD.

You can connect with others talking about CKD in the Kidney & Bladder group here: https://connect.mayoclinic.org/group/kidney-conditions/

Has you doctor suggested treatment or diet options?

Thank you for your reply. My Dr. has not given me any information and it has been a month. I think he is waiting on the misc test results to call me back into the office. On my electronic records that have come back and there is a glitch on the Hep C test. There was a note that mentions a kidney biopsy and goodpasture disease. I have researched a lot and have completely changed my diet on my own. I am anxious to move forward. I will check out the link that you sent me.

I got sick in February 2020 and could not get in to test due to the symptoms and my fever had subsided. Took an antibody test 7 months later (gets sent to Mayo) and that came back normal yet I continue to struggle with fatigue and inflammation. My Osteo doctor diagnosed me as a covid long hauler however she left my healthcare provider and I can only point to her diagnoses notes. I have a new primary now and we are starting from scratch with bloodwork and imagery. Thank you!

Hi @bbartolotto, welcome to the post-COVID group. You'll notice that I moved your question to this existing discussion where @otter2154 was asking as similar question "Could I be a COVID Long-hauler even with a negative test?" I did this so you can connect and to review the previous comments.

You mention that your new primary care physician is "starting from scratch" with bloodwork and imaging studies. Do they also have your previous lab results and imaging studies to compare with? What led your osteo doctor to conclude long-COVID?

Hi, @colleenyoung. Thank you for accepting me in to the group and thank you for moving my post to the existing discussion. I'll do a search next post for similar discussions.

Yes, I am with Ridgeview clinics and they do have the previous lab results and imaging studies however they have been spread out over almost two years now and were done with two previous doctors. My osteo doctor came to the conclusion based on length of symptoms and the close contact I had with people who tested positive. In addition, she had some experience with antibody tests coming back negative after several months after the person tested positive. I do have everything chronicled on MyChart which is very helpful.