Just an update on my ongoing #LongCovid journey for those following along and looking for help/seeking answers. I got Covid at the end of March, couldn’t get tested here in NYC, antibodies had already disappeared by the time antibody testing was available to public.

Was diagnosed with Dysautonomia over summer and began POTS protocol which made a SIGNIFICANT difference that allowed me to start getting out of bed. Time release beta blocker (Propranolol), switched from SSRI (Zoloft) to SNRI (Effexor), Liquid IV, compression socks, PACING.

Was diagnosed by a cardiologist specializing in Dysautonomia who I found through the NYC @Dysautonomia Facebook group at the advice of @AlisonSbrana from the @itsbodypolitic Slack group. Helped with fatigue, brain fog, tachycardia, dizziness, fainting, and adrenaline surges.

(At the time, I was under the impression that my anxiety about being sick for so long was causing these unprecedented and deeply intense panic attacks at all hours of the day and night. Actually, the Dysautonomia was causing adrenaline surges that mimicked panic attacks.)

After a few months, it became apparent to me more stuff was still undiagnosed, so I saw an ME/CFS specialist — again recommended from @itsbodypolitic #LongCovid Slack support group — who ran dozens of blood tests on me and found lots of stuff for us to treat and try to manage.

Mast Cell Activation Syndrome (MCAS) seems like the culprit behind my ongoing respiratory issues; starting a mast cell stabilizer, H1 blocker (Claritin), and Low Dose Naltrexone (.5 mg LDN) made an *immediate* difference and I haven’t sensed ANY chest inflammation since starting.

I also have reactivated EBV and HHV viruses, which is common in ME/CFS and #LongCovid patients, and which I am treating with the antiviral Famciclovir. I haven’t noticed a difference from it yet, and no side effects either.

My ME/CFS specialist also found very low B12, very low iron, high autoimmune inflammatory markers, and markers for issues with my stomach lining. Likely Covid triggered an autoimmune response that is causing pernicious anemia. She has referred me to a hemotologist and B12 shots.

I went months and months and months with no doctors believing anything was wrong with me besides anxiety, and multiple doctors telling me there was no way I had Covid without developing/keeping antibodies. Both of those things have now been proven 100% incorrect.

I know it’s hard, terrifying and demoralizing, but don’t give up. You know your body. Keep seeking answers and don’t let any doctor try to convince you it’s all in your head and you just need exercise and sunlight. Seek out support groups. @itsbodypolitic is a trove of resources.

There are loads of support groups on Facebook and Reddit. Search for #LongCovid, Dysautonomia, POTS, MCAS, and follow the trails that address your personal symptoms.

My eternal gratitude to the ME/CFS community of patients and activists, without whom LC patients would be lost.

Helpful people/orgs: @AlisonSbrana, @itsbodypolitic, @fi_lowenstein, @PhysiosForME, @Dysautonomia, @PlzSolveCFS, @keyeri, and oh so many more. You’re not alone.

Oh! And this INVALUABLE resource. All the tests and meds and electrotypes in the world would not be helping me without *strict* ME/CFS pacing. http://www.cfsselfhelp.org/pacing-tutorial