Monoclonal Antibodies: A New Treatment for Long COVID

Posted by beachbum @arichards3, Jan 18 11:46am

Stumbled across this article that is very encouraging and worth the read.

https://www.medscape.com/viewarticle/monoclonal-antibodies-new-treatment-long-covid-2023a1000wfa?form=fpf

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That’s really interesting and great news! Are doctors on board?

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Very interesting article. I got covid in March followed by long covid (LC). The LC slowly declined and disappeared completely 3 months ago after catching a cold. The cold wasn't bad, but I've noticed with my various autoimmune diseases that they are better after being sick with other things. When folk have bad Reactive Arthritis or RA doctors sometimes give methotrexate, which decreases WBC and suppresses the immune system. I think the purpose is to distract the immune system so it goes back to looking out for invaders, instead of attacking us.

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@celia16

That’s really interesting and great news! Are doctors on board?

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No- Doctors are not onboard. I have asked.
UC San Francisco is doing a study.
I am going to ask again…but so far, my doctors have said no.
I have also gotten a no when I requested paxlovid.
I have had long covid for over a year. I have drugs that help with the symptoms- but no treatment yet…
Even a pulmonologist felt badly that he had no treatment to give me.

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Thanks for this link... I also find it encouraging. As far as "doctors being on board," I can't imagine what it will take for that to happen. After 10 months of LC, and repeatedly reporting classic symptoms to my GP and being tested for a bunch of stuff by her and a heart guy, with lots of "normal" results, they both have (begrudgingly) made the diagnosis of LC. But other than urging yet another test, this time a CT scan looking for microclots, nothing. Crickets. So here we are and while it's good that research is finally showing some hope for a diagnosis and possibly effective treatment (not just more "supplements" and "pacing"), I fear the medical profession is not up to this challenge. I am a previously very healthy patient at a leading teaching hospital near Chicago and have been on a long waiting list for the LC Clinic at NWMH, but reviews are mixed for those who've tried this route, so optimism is limited. I've noticed over the past few months using this very helpful forum that people like us seem to be giving up some hope that "this too will pass." Don't mean to sound like Debbie Downer, but that's where I am.

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@janeaddams

Thanks for this link... I also find it encouraging. As far as "doctors being on board," I can't imagine what it will take for that to happen. After 10 months of LC, and repeatedly reporting classic symptoms to my GP and being tested for a bunch of stuff by her and a heart guy, with lots of "normal" results, they both have (begrudgingly) made the diagnosis of LC. But other than urging yet another test, this time a CT scan looking for microclots, nothing. Crickets. So here we are and while it's good that research is finally showing some hope for a diagnosis and possibly effective treatment (not just more "supplements" and "pacing"), I fear the medical profession is not up to this challenge. I am a previously very healthy patient at a leading teaching hospital near Chicago and have been on a long waiting list for the LC Clinic at NWMH, but reviews are mixed for those who've tried this route, so optimism is limited. I've noticed over the past few months using this very helpful forum that people like us seem to be giving up some hope that "this too will pass." Don't mean to sound like Debbie Downer, but that's where I am.

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You can count me in the “Debbie Downer” group too. I’m into this thing now for two years. I have honestly been to hundreds of appointments.
I am now with an Integrative medical group that acknowledges my condition, but after three months and many appointments I continue to get worse.
Unfortunately I feel if my body doesn’t figure this out.....nobody else will.

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Gosh, I am surprised that some of you have responded that your Doctors wouldn't let you pursue this course of action. I haven't tried, but I think my Doctors would. My son is a Drug Sales Representative and offer Monoclonal. I will reach out to him to see what his experience is.

I have been to the Mayo Clinic LC program and while I don't feel 100% over LC, my Doctor there has inferred he is holding Paxlovid in reserve to "nuke my symptoms" if needed. That said I have read of small studies saying Paxlovid kills LC, another vaccination kills LC, another COVID infection kills LC, and now this article Monoclonal.

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I’m not sure what to do, but I can’t give up hope.

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@arichards3

Gosh, I am surprised that some of you have responded that your Doctors wouldn't let you pursue this course of action. I haven't tried, but I think my Doctors would. My son is a Drug Sales Representative and offer Monoclonal. I will reach out to him to see what his experience is.

I have been to the Mayo Clinic LC program and while I don't feel 100% over LC, my Doctor there has inferred he is holding Paxlovid in reserve to "nuke my symptoms" if needed. That said I have read of small studies saying Paxlovid kills LC, another vaccination kills LC, another COVID infection kills LC, and now this article Monoclonal.

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How bad were your symptoms? What kind of condition was your body in? How dose a person go about getting into this Mayo Clinic Lomg Covid program? Thank you. Been sick 3 years. Bed ridden

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@outsider239 I have not taken Monoclonal Antibodies but am a Long COVID sufferer and have been through they Mayo Clinic.

I began experiencing symptoms in November '21 after my first (and last) Moderna booster. My symptoms are/were PEM, Exercise Intolerance, and a unique sensation in my head that medical professionals classify as pain (because it certainly doesn't feel good or normal). My head sensation feels like dizzy but not quite that, light headedness but not quite that, dropping on a roller coaster but not quite that. Mix those all together and that's the best I can describe it. These weren't debilitating, but life limiting. I am grateful I am retired and wasn't retired to do the 40 hour grind (in my jobs it was always 50+) because I don't know if I could do it and I wouldn't have been able to follow the Mayo plan.

I was referred to Mayo Rochester by my cardiologist and went there in August '23. It took me that long to wind through all the specialties here at home and get all the special tests. My Mayo plan was fully in place in September '23 and today I feel better, not 100% but better, I will take that win. The only thing testing here picked up was "some level of dysautonomia" which I have learned is a symptom of LC. By the time I was tested again at Mayo the dysautonomia was gone which was a good sign of progress back towards normal.

As far as getting into Mayo LC program as I mentioned my cardiologist referred me so that is one way. There is a moderator on this blog who often posts the Mayo application process. I will look for that after I post this comment and add it back in.

I wish you well, and one word of advice . . . keep fighting and advocating for yourself. There is nobody waking up each morning trying to help us, you must fight, and find your own solutions.

Here it is, lots of items on this link, but towards the bottom is the application process.

https://connect.mayoclinic.org/comment/1000256/
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@celia16

That’s really interesting and great news! Are doctors on board?

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All doctors? No. Your doctor? Unlikely. I’ve been quite impressed with how my MD DOES NOT keep up with this research. The doctors running the study? Certainly.

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