Any ideas how to access the pure form of international meds? (Just the active ingredient).

Ibudilast is an OTC med from Japan and it’s promising for #LongCovid

It helps Dianna, but she reacts strongly to the excipients (all the inactive ingredients) in the commercially…

Kyle here:

Does anyone know a San Diego based PT (or other doc) that can examine Dianna in-home for hyper-mobility and/or Cranial cervical instability?

Any leads would be much appreciated!

#MECFS #LongCovid #mcas

#UniteToFight2024

On May 15th - 16th, an international online #LongCovid & #MECFS Conference will take place, featuring over 18 hours of world-class speakers.

The conference offers free access and is entirely community-driven.

Please assist us in spreading the word about this…

More labs came back. I very likely have Lyme disease as well. But I can’t tolerate the antibiotics for it because of my severe MCAS. I feel so trapped, depressed, sad, so so scared.

Sharing and talking about #LongCovid is the most important thing. The Long Covid moonshot has more stories like Dianna’s. Here’s some orgs to consider supporting:

omf.ngo/ways-to-donate/

polybio.org/donate/

longcovidmoonshot.com

(By Kyle)

Just found out today is #LongCovidAwarenesDay
Dianna has that.

In case you weren’t aware.

Tweeted by Kyle

If I ever get better, I’m going to treat myself to a fancy AF Montblanc pen.

(But not the fanciest they have because if I had that kind of money, I would spend it on a house 😅)

I had so many dreams.
I wanted my own science show on Netflix.
I wanted to start a family with Kyle.
I wanted to scuba in Australia.

Now, I just want to walk again.
I want to have a real conversation.
I want to read a book again.
I want to listen to music and see my family.

I just tested positive for bartonella and babesia. That’s #LongCovid , #MECFS , MCAS, SIBO, and a lower gut infection, and now 2 vector borne diseases. Do I get BINGO?

(Tweeted by Kyle for Dianna)

I’m just so scared I’ll never walk again. Or read a book again. Or have a conversation or make a video ever again.

I've been bedbound since January with long Covid, but I still love to dress up for Halloween. So my husband made me this costume (posted by Kyle, the husband.)

(From husband Kyle) Dianna has been in a really tough crash the last couple months. She has very little energy so is staying off her phone. I’m in with her everyday holding her hand. Some days she’s in pain, some days not as much. She’s conserving energy so not to crash harder.

Twitter seems to be a relic of the past eh? Because they made X stink. Haha.

Well, that was all my energy for the week. See you next Tuesday.

Something weird about my disease… I drink only salt water. I’ve been drinking salt water for six months. I’m so used to it now, I don’t even like plain water anymore. 🥴

When I am better, I would like to be invited to everything, thanks.

Your uncle’s banjo performance? Count me in. Your nephew’s Bar mitzvah? I’m there.

Don’t worry, you have a couple years to get your invitations ready.

Today marks one year since I got COVID. I’m finally starting to see tiny bits of progress in my recovery, which I feel cautiously optimistic about.

But today I mostly feel a profound grief, missing the life I had a year ago. 😔

#LongCovid