5 patients on this FDA panel:
1) Stephanie, had respiratory symptoms, did a #LongCovid clinic, got pulmonary rehab, included treadmill & bike, 24 sessions of respiratory rehab bc that's what insurance covered, but she is still continuing alone, took amantadine but didn't like it
1) Stephanie, had respiratory symptoms, did a #LongCovid clinic, got pulmonary rehab, included treadmill & bike, 24 sessions of respiratory rehab bc that's what insurance covered, but she is still continuing alone, took amantadine but didn't like it
2) Jackie, #LongCovid since Jan 22, has new onset ME/CFS & dysautonomia for COVID. Was prescribed exercise, learned the hard way that it was harmful. Bad PEM. Learned pacing, still uses pacing. "Exercise still causes me harm now." Takes >30 pills/day. Treated inhumanely.
Jackie: finding providers who know how to treat ME/CFS and dysautonomia helped most, uses IV hydration to prevent ER visits. Uses hormone replacement therapy, MCAS treatments, midodrine, and others. Treatments need to address autonomic dysfunction, viral persistence, & others.
3) Daniel @dsethlewis: when #longCovid takes your independence, security, freedom....all you have is your hope for treatments. It's been 3 years - we don't have 3 more years. Current treatments are all symptom management, none are cures, none substantially help.
Daniel: Takes midodrine and a beta blocker for POTS.
We need ambitious new medications that change this disease.
Fast track all the tools at your disposal!
Doctors need clear and direct clinical guidance to prescribe treatments.
We need ambitious new medications that change this disease.
Fast track all the tools at your disposal!
Doctors need clear and direct clinical guidance to prescribe treatments.
Daniel: "This illness is defined by loss and we are losing everything, even our memories of who we are." #LongCovid
Super well done speech, could not capture all of it, recommend watching if there's a recording!
Super well done speech, could not capture all of it, recommend watching if there's a recording!
4) Tammy: #LongCovid patient in a small rural area near Appalachian mountains. Didn't have access to PCR testing, so couldn't get into Long Covid clinics when they became available. Ruled out cardio factors but have neurological factors. Took 18 months to *begin* to find help.
Tammy:
Have tried: physical therapy, vitamins, beta blockers, gabapentin, statins, pain creams/muscle relaxers, all with limited success.
Felt a lot worse after two weeks of physical therapy; had to discontinue due to exercise intolerance.
Have tried: physical therapy, vitamins, beta blockers, gabapentin, statins, pain creams/muscle relaxers, all with limited success.
Felt a lot worse after two weeks of physical therapy; had to discontinue due to exercise intolerance.
5) Angela @ItsAngInLA!
Had a lot of early severe symptoms, incl seizures, mini strokes, new onset anaphalaxis, numbness & inability to walk
First wavers had a fundamentally different experience of care..."Just because we weren't hospitalized doesn't mean we shouldn't have been"
Had a lot of early severe symptoms, incl seizures, mini strokes, new onset anaphalaxis, numbness & inability to walk
First wavers had a fundamentally different experience of care..."Just because we weren't hospitalized doesn't mean we shouldn't have been"
@ItsAngInLA Angela: Has new onset ME/CFS, most debilitating symptom is post-exertional malaise, also bad mast cell activation symptoms
Biggest barrier to care has been the lack of providers who have understanding of viral-onset illnesses
After reinfection, symptoms are worsened!
Biggest barrier to care has been the lack of providers who have understanding of viral-onset illnesses
After reinfection, symptoms are worsened!
@ItsAngInLA Request to #LongCovid treatment developers: please focus on post-exertional malaise, we need to understand how it relates to mast cell, clots, connective tissue disorders and others!
"The answers are there, we just have to look at the body much more globally."
"The answers are there, we just have to look at the body much more globally."
@ItsAngInLA Next up patients calling in:
@SawyerBlatz first up!
Was a previously active and healthy person before first infection (despite recent boosted) in Nov 2022, #LongCovid has been devastating for me. Lost work, my ability to leave the house, the ability to shower daily.
@SawyerBlatz first up!
Was a previously active and healthy person before first infection (despite recent boosted) in Nov 2022, #LongCovid has been devastating for me. Lost work, my ability to leave the house, the ability to shower daily.
@SawyerBlatz Has post-exertional malaise, cognitive dysfunction, reactivated Epstein-Barr Virus (EBV); current intervention is looking at treating reactivated EBV
Treatments looking at post-exertional malaise and orthostatic intolerance are of highest interest.
Treatments looking at post-exertional malaise and orthostatic intolerance are of highest interest.
Missed the next caller's name & early testimony.
Taking nattokinase, had metabolic changes, had new onset high cholesterol, has consistent high heart rate but no help; had no PCR test so was not able to access #LongCovid clinics; providers have been ignorant about LC research
Taking nattokinase, had metabolic changes, had new onset high cholesterol, has consistent high heart rate but no help; had no PCR test so was not able to access #LongCovid clinics; providers have been ignorant about LC research
next caller, Christine, uses Ritalin and Naltrexone (unsure if low dose), saline infusions twice a week for POTS; saline increases her plasma and blood circulation. occupational therapy to learn about energy conservation; has light intolerance and uses glasses to block light
following Traumatic Brain Injury and stroke protocols; had tried to do graded exercise therapy for pulmonary therapy but caused fainting and seizure-like symptoms
Has seizure activity, becomes cognitively not present for 60-90 minutes at a time
Has seizure activity, becomes cognitively not present for 60-90 minutes at a time
Echoing everyone else that #LongCovid is a devastating condition, will not be able to continue teaching; when outside in the world uses noise canceling headphones
Missed this caller's name, was hospitalized during COVID but it was coded as migraine; had well-controlled migraines pre-COVID, pre-COVID was able to go boating every weekend which had many triggers (boat rocking, flares of light from water, drinking alcohol).
Diagnosed with POTS and heart failure, missed the drug she's taking for heart failure, taking 6000mg of sodium daily and has a walking aid for POTS; mostly housebound.
Was a 43-yr-old very active person, biker, hiker, recently did a sprint triathalon; now unable to exercise
Was a 43-yr-old very active person, biker, hiker, recently did a sprint triathalon; now unable to exercise
Priorities for treatment would be brain fog, fatigue, and one other I missed
Polling is about to happen to those with lived experience who are online, join if you're able! #LongCovid
Here's the link if you need it: fda.yorkcast.com
Nervous about the treatments moderator listed off, didn't mention any of the good ones
Back to calls; current caller had several strokes, has damage in frontal lobe & elsewhere, lesions across brain, cardiac & gastrointestinal issues; she had no #LongCovid clinic nearby would accept her; seeing over a dozen different specialists to manage each condition separately
Doctors acknowledged to her that these were the result of multiple infections, has several brain aneurysms now that are inoperable, has received now a terminal diagnosis
"I'm dying right now because I haven't gotten treatment - this is what is going to happen to millions of people"
"I'm bedbound, I can't take care of myself, I have the beginning stages of dementia, I'm 45 years old" #LongCovid
"I'm bedbound, I can't take care of myself, I have the beginning stages of dementia, I'm 45 years old" #LongCovid
The prior caller was @__Granuaile__ ❤️❤️❤️
Back to polling question, please vote if you're able!
Next caller: severe fatigue and post-exertional malaise, no providers could help, had to learn everything herself, had to be her own doctor; there's a #LongCovid clinic in her town but doctor there was also gaslighting, huge problem
Would like antivirals, to avoid reinfection
Would like antivirals, to avoid reinfection
Next caller is maybe @adinagerver?
Prior to covid was a healthy 40 year old, working 3 jobs, walked a ton, easily walked 2 miles
Now has profound fatigue, post-exertional malaise, joint pain, orthostatic intolerance/POTS, nerve pain, brain fog.
Prior to covid was a healthy 40 year old, working 3 jobs, walked a ton, easily walked 2 miles
Now has profound fatigue, post-exertional malaise, joint pain, orthostatic intolerance/POTS, nerve pain, brain fog.
@adinagerver Patient at Mt Sinai #LongCovid center; has multiple specialists, now on statins and beta blockers for inappropriate sinus tachycardia
@adinagerver Had a blood clot in lung, anticoagulants helped. Documented cognitive impairment; used to be able to process legal documents in multiple languages, can't now. Diagnosed with ME/CFS, on LDN, helps joint. Oxygen for pulmonary rehab helped. Fatigue & myalgia are priority symptoms.
That's all I can do, hope that was helpful!
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