Jayne Clamp

English-American 🏴󠁧󠁢󠁥󠁮󠁧󠁿🇺🇸

[Jayne Clamp @jayneclamp]

@DafoeWhitney @SessionsTlc Also, this recently published study on blood-brain barrier disruption may be of interest. I do not get the sensitivity to light/sound, but I get flashes of intense neuropathy in my head (pain, weird sensations, etc) and it SUCKS. 2/2
https://t.co/SFBAm3XEOJ

[Jayne Clamp @jayneclamp]

@DafoeWhitney The "migraine w/out pain," along with sensitivity to light & sound in some people with LC, is discussed in the latest episode of the #LongCovid podcast @SessionsTlc. 1/2

https://t.co/kxAzpGiyl4

[Jayne Clamp @jayneclamp]

@zalaly Thank you for your testimony and advocacy for us.

[Jayne Clamp @jayneclamp]

@LauraMiers It presents like so many things . I’ve been screened for all mentioned above plus MS, vasculitis, sarcoidosis, lupus, rheumatoid arthritis, amyloidosis, the list goes on … currently waiting on lymphocyte panel. Did have high EBV #s, inflammation markers & 1 rheumatoid factor. 🤷‍♀️

[Jayne Clamp @jayneclamp]

@SalvMattera Did all these cardiac tests for skipped beats post Covid. Heart looked fine. What it really took was wearing 30 d heart monitor which showed issue , then finally I was prescribed beta blocker which immediately helped (nebivolol). I do get them when I’m hydrated, but way better.

[Jayne Clamp @jayneclamp]

@SEPfieldPatient @dysclinic Nebivolol has helped my skipped beats, palpitations and random chest pains from L Covid (as long as I stay hydrated). This was a game changer for me because those were some of the scariest symptoms.

[Jayne Clamp @jayneclamp]

@resiapretorius @RobWust Is this different than the amyloid deposits in amyloidosis? My dad was diagnosed with it earlier this year & was told it was the wild type (ie not hereditary). My urine test was negative. The symptoms are so similar to Long Covid though, including my own. Did Covid trigger his?

[Jayne Clamp @jayneclamp]

@ahandvanish This gives me hope I should keep checking mine. Going on year 3 & earlier this year, we figured out my EBV numbers were high but they were moving in the right direction. Have you taken any meds for just straight up inflammation? My complement markers are still high.

[Amy Proal, PhD @microbeminded2]

2/ We review evidence showing that some Long COVID patients may not fully clear the SARS-CoV-2 #virus after acute infection. Instead, replicating virus and/or viral RNA - potentially capable of being translated to produce viral proteins - persist in tissue as a "reservoir"

[Jayne Clamp @jayneclamp]

@roxy_mojo Neuropathy very common post Covid. Get your b12 levels checked - if low, b12 def helps. Also gabapentin if it still doesn’t go away. I was checked for small fiber neuropathy and did not have. It gets better with time. (Beta blockers can also cause numb hands).

[Jayne Clamp @jayneclamp]

@ahandvanish @loscharlos My LC symptoms began with left hand / arm (numbness between thumb & index, then burning up arm first few days) & almost 2 years later, it’s still my left arm that feels like it has endothelial damage. Also left forehead goes sore (but so does brain stem & top of head so 🤷🏼‍♀️).

[Jayne Clamp @jayneclamp]

@JasonIsbell 👏🏻 excellent.

[Jayne Clamp @jayneclamp]

@organichemusic Hang in there. You’re a big resource to the community. I just had a neurologist switch & meant a lot when new dr said “I believe you” (even tho she has no answers). So I have 3 out of 4 drs now that don’t doubt my symptoms which is something I guess. (But don’t mask anymore.)🙄

[Jayne Clamp @jayneclamp]

@AlisaValdesRod1 Same findings for me last March. Repeat MRI 3 mos later showed no change. Im 46. Unusual for my age, but they chalked it up to being a former smoker. New neurologist doesn’t think it would cause my current LC symptoms tho. Lots ruled out like vasculitis, MS, etc.

[Jayne Clamp @jayneclamp]

@D_Bone Mine is not as bad as yours by any means, but yep, same. Up the arm too. Welcome to Long Covid, folks. (All tests so far = normal. Checking for small fiber neuropathy next month.) I will say mine has improved greatly in year 2 vs year 1 of this.

[Jayne Clamp @jayneclamp]

@maxwellhallel It’s extremely common here in GA (USA) for the docs & nurses not to be masked anymore. Nurses at my cardiologist= not masked. My neurologist & her nurses= not masked. OBGYN office = not masked. I got Covid from the hospital here in Nov = mask policy not enforced.

[Ziyad Al-Aly, MD @zalaly]

Paxlovid can prevent #LongCovid

The latest from our team in @JAMAInternalMed

by @Biostayan @TaeyoungChoi93 @zalaly

A thread

https://t.co/YRHPbdHeKe

[Jayne Clamp @jayneclamp]

@ahandvanish (con'd) This symptom has recently gotten worse last few weeks. Neurologist to do small nerve biopsy. I read about CSI yesterday & that really feels applicable, but so have a lot of things over the past year.

[Jayne Clamp @jayneclamp]

@ahandvanish Yes! Did you find any answers? Brain stem goes sore, front left of forehead goes sore, neuropathy in head. Had it in the beg of symptoms, but worsened a few months later in a stressful situation rushing dog to vet, i felt fluid rush up my brain stem (?) & it's been worse since.

[Jayne Clamp @jayneclamp]

@doctorasadkhan Totally understand. Good luck with the research as well as your own journey w LC!