Lavender (she/her)

Hi long covid crew, I’d like to see a Dr to run tests for reactivated viruses and determine if my swollen and worsening lymph nodes are anything other than MECFS. Any recommendations for a good Dr MA, NH, ME?

I’m so sorry

Now that I have POTS can I deduct pickles from my HSA? It seems only fair…

Got the flu shot at Walgreens. Pharmacist noted ‘better late than never.’ He said antibiotics and cough med orders were through the roof. I was the only person masked 🙃

I have an increase in headaches & nausea, and new sudden vomiting with POTS from longcovid. It’s not improving after stopping Mestinon. Anyone have recommendations for things I can ask my neuro’s NP next week?

Good to know. I need to be more consistent with CoQ10 & will keep watch for side effects

I’ve been on Mestinon for long covid for 3 months and have had such a slow increase in GI problems I didn’t realize it was related until now! If you have strange new symptoms check your meds!

My cashier at TJs said her husband had cancer and they had to cancel plans because all of their immediate family was sick. She asked if the same thing happened to me. I said no, I mask as a precaution to avoid viruses. She thanked me for doing so. Sometimes it’s that easy 💛

😂 yes! A close second for me is the sound of tinnitus. One track on repeat all year.

Ivabradine has helped my POTS.

My heart breaks for all the young people that have long covid. 💛

Second #longcovid study visit. When I stand blood flow to my brain decreases by ~40%. It’s so validating to have data to explain why I feel awful and combat the gaslighting of everyone pretending covid risks aren’t real.

3 years later and I have a POTS diagnosis! I know this will make for a challenging second half of life, but today I’m celebrating having a name for it. #LongCovid

I participated in this. I thought the research team was terrific.

I think Mestinon is helping my long covid PEM! I took on a huge home project yesterday and was ready to wake up to flu like symptoms. No sore throat, no fever/chills. Really sore muscles and a mild headache. Hopefully this holds true for tomorrow too 🤞🏻

Thanks for sharing. I just started this med.

Yes! I take mine with breakfast. When I increase a dose it makes me a little foggy, if it could impact my work I take 80% early then 20% 2-3 hours later. I get a little nauseous midday with an AM dose, but I think that’s only partly LDN.

I’ve been frugal after having to take a year off work because of long covid. But this year I decided to invest in seeing some specialists. I’m nervous about what my upcoming bills will be but I hit my deductible today so hopefully that will help.

Woah I got a call today that I could do autonomic testing in a week! I thought I’d be lucky to get in this year. I’m interested to see how I fare in the tilt table test. I failed the NASA lean test at minute 9.

Yes! My Ivabradine from CostPlus is $40, with insurance at a big name pharmacy it was $75.

Oops Mestinon, spelled it wrong

On the verge of happy tears. Finally saw an autonomic neurologist that was not phased by long covid and is ordering blood work, autonomic testing, and having me try Mestonin. Check out local Dysautonomia groups for people in your area. I waited a year for this appt and damn was it worth the wait.

Rationing heart medication because a specialist wants me to get it from my primary care form now on, with zero notice 😡

100%. It’s taken me a while to learn how to balance & honor my past and present identities.

How interesting, thanks for sharing. Saving this for later 📌

I like that attitude!

I’m super sensitive to meds, so that might be why. Are you taking that dose for LC? I’m still increasing and not sure when I’ll stop. At 2.5mg now.

Thank you! Yeah it will be a test to see if the Ivabradine helps reduce the PEM or not.

The stars aligned today and I cleaned out my shed, despite my long covid. Yesterday I increased my LDN, resulting in an energy boost. It was not super hot. Ivabradine kept my HR in check. And I have off work tomorrow to rest. It felt so good to be active. But these stars align infrequently.

Thank you!