Sunday, January 16th, 2022, 11:32

Mood: Refreshed, finally!

Finally, I have sustained symptom improvement! I will still be avoiding TikTok until my isolation period is over--although I miss it very much--due to its disturbing tendency to show me videos of people dying from covid while I have covid. I wrote these YouTube comments under Dr. John Campbell's most recent video on covid, I will reprint them below because they might be helpful to see how covid presents in two young patients with EDS.

My case: 29yo female (30 in two weeks), hx significant for Ehlers-Danlos and common comorbidities (POTS, functional digestive ailments, gluten intolerance, allergies, and autism) and former smoker of 13 years (2007-2020). Normal BMI. Vaccinated and boosted using Moderna. I am T+8 days from symptom onset.

T+0-2 days were very mild with no fever, mild sore throat, mild sinus congestion, and mild fatigue. In fact symptom improvement at T+2 days; I thought I was on the mend.

T+3-4 days were somewhat worse with worsening of previous symptoms.

T+5 days I developed bronchitis, 37.5-37.7C temperature, 96% SpO2, and RHR of 110-130BPM. This was a very scary day, as the bronchitis onset was sudden and, it being my first time with covid, I really had no idea what to expect. Dr. Campbell's data has been a source of comfort to me and has helped me to think about my case more logically, but it's really a different beast when it's you yourself with it for the first time, so don't be afraid to admit that it did cause you anxiety! This was the worst day of my symptoms.

T+6-7 days I did still have the bronchitis but an improvement of previous s/s, including normalization of temp, SpO2, and RHR. The exception to this was my sore throat, which remained very, very sore.

Now I am T+8 and have an improvement of all symptoms and sustained normalization of temp, SpO2, and RHR. In fact I have just cleaned the extremely messy isolation room (thank God!) I've shared with my daughter (who was positive with symptom onset two days before mine).

My daughter's case: My daughter's omicron case: 9yo female, hx significant for Ehlers-Danlos (presumed diagnosis), hay fever, penicillin, and recent surgery to remove a fibroma. Normal BMI. Vaccinated using Pfizer. She is T+10 days from symptom onset.

T+0 days: mild lethargy, headache, and sore throat. We both mistook these as common EDS symptoms.

T+1 days: worsening of previous symptoms and fever of 37.9. Presented to urgent care where she tested positive on rapid.

T+2-3 days: worsening of previous symptoms with resolution of fever. At T+2 days, she developed an itchy rash along the trunk (front and back) of her body that resembled a measles rash. She also had small red spots on the inside of her upper throat, near her uvula.

T+4 days: resolution of headache and rash. Development of new, productive cough.

T+5-10 days: resolution of all symptoms except for cough and sore throat, which have improved gradually each day.

Again, this was a very anxiety-inducing experience for me as a parent, even with the evidence and logical daily narratives from Dr. Campbell, because of the novelty of this virus and its presentation in my daughter. However, other parents and particularly parents of EDS kids, rest assured that she did successfully beat the virus in its acute phase, even with her comorbidities!

Treating at home: regular zinc and vit C supplements; lots of fruits, vegetables, and soup; calamine for rash; regular hot showers and steaming to loosen secretions, and to moisten our very sore and painful mucus membranes (I cannot stress enough how important it is to maintain humidity for treating the sore throat, sinus headaches, and bronchitis!); and I took naproxen 220mg on T+5 days to control fever, because fever was exacerbating my POTS symptoms.

It is a bit of a longer virus with more ups and downs than our seasonal flu, please do not be afraid of that like I was, as this is normal.

I was also in contact with multiple RNs the entire time of our illness. Please contact licensed medical providers with questions and possible treatment options. Good luck to all. I promise it is possible to overcome this virus.