Dianna Cowern @thephysicsgirl
Science Video Creator, Currently #LongCOVID, MIT Physics, Forbes 30u30 https://t.co/BT5fDLw3NO patreon.com/physicsgirl 8000 pc from Sagittarius A* Joined March 2012-
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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)
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_world 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
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@thephysicsgirl When you do find a workable solution I do hope you’ll post a follow-up as I have a family member that is super sensitive to excipients and needs almost everything compounded and this is one we haven’t figured out yet either. Good luck and thank you!!! 🙏
@thephysicsgirl I called about 10 compound pharmacies and non of them carry it.
@thephysicsgirl So relieved to hear that Diana's still fighting. Her journey is why I still wear a mask to the grocery store. People give me comments and dirty looks, and all I can think of is the image of her unable to get out of bed. 😕
@thephysicsgirl If the drug is soluble in water, but the excipients you're allergic to are all insoluble in water, dissolving a tablet in water and filtering it through coffee filter paper can work. People do this with low dose naltrexone.
@thephysicsgirl @ahandvanish Suggestions about compounding pharmacies only works if they can source the raw Ibudilast ingredient from Japan which I’m guessing most can’t. Contact the company that makes Ketas in Japan and ask if they supply the raw ingredient to any compounding pharmacies internationally?
@thephysicsgirl I'll check with my sister-in-law (Doctor in Argentina) if we can get that one down there. If so, I'll communicate over here or Patreon with y'all .
@ValeBodi @thephysicsgirl @LonnieRhea I have been looking around for a home health physical therapist who already understands Long Covid or at least would be amenable to a preparatory conversation to get up to speed. So far haven’t been successful. Still looking. ☺️
@thephysicsgirl @sunsopeningband @LonnieRhea can you help?
@thephysicsgirl Anthony Carey of Function First
@thephysicsgirl From someone also exploring CCI: I'm not sure a physio would be able to diagnose, but I assume Dianna wouldn't be able to tolerate the actual testing. Jeff Wood may have leads: mechanicalbasis.org I'm not sure about rn but I believe he was Cali based when he fell ill.
@thephysicsgirl #medtwitter In search of a physical therapist or physician with knowledge of hyper-mobility and/or cranial cervical instability able to do a home visit for a severe Long Covid / MECFS patient in San Diego. Anyone know a good fit in their network?
@thephysicsgirl My spouse also has pretty severe MECFS and had cranial cervical instability from Ehlers Danlos which might be what Dianna is dealing with. Best specialist neurosurgeon is in NY. She got a skull-c2 fusion that saved her quality of life. Another nsurgeon at Cedars. DM to connect
@thephysicsgirl Dr. Bolognese at Mount Sinai South Nassau on Long Island is one of the best in the world
@thephysicsgirl @jenbrea may have connections that could help. Here's a link she has provided that may also add info. me-pedia.org/wiki/Craniocer…
@thephysicsgirl Can you first get geneticist's diagnosis of HSD/hEDS (via simple measurements)? Then the segue to determining CCI via radiology cld be easier, given previous MD's diagnosis. Often neurosurgeons/ ortho surgeons (cerv spine) simply r/o surgical necessity. Bests from NYC.
@chattycalico @thephysicsgirl Dr Atwal does telemed. Geneticist specializing in connective tissue disorders (not an ME expert). His prices are $$$, but very straightforward to book & she may only need one appt. Getting Dx'd opened up a world of understanding and management for me. atwalclinic.com
@thephysicsgirl Looking for a possible diagnosis of Ehlers Danlos Syndrome? I was diagnosed with that in 2014. Diagnosis is usually officially made by a geneticist. I don't know of anyone who comes to your home but maybe someone would consider a virtual appointment.
@thephysicsgirl Sorry I don't know anyone in San Diego. A craniosacral PT would be the best, hopefully someone can recommend one. Join us on the FB group ME/CFS + Brain and Spine. There are doctor recommendations and guides to help you through structural diagnoses like CCI and Tethered Cord.
@thephysicsgirl Hang in there! Hugs. You’re always a fighter and survivor.
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