Monoclonal Antibodies: A New Treatment for Long COVID

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.

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.

Thanks for this, kayabbott! Good news about your remission from LC. I caught a cold this week and now I'm hoping I'll experience a miracle too... I love the hopeful stuff on this forum ...

@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/

@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/

Everyone!

This was a study of THREE patients. Yes, dramatic results in these patients. The researchers could have just randomly selected three people who responded. This must, must, must be tried in more patients to determine whether it can benefit the vast majority of people.

Each study takes time. Add up the time needed to run studies that can confirm these very preliminary results and we are at minimum a year out from there being enough patients treated to gain approval.

The silver lining is that the drug was approved for other uses and has tons of safety data.

I suspect my LC is over, rather than in remission. Time will tell. My symptoms gradually decreased over time and in October I caught a cold from my husband. My symptoms were gone after that so I don't know if my immune system was distracted and lost interest in attacking me, or what. Perhaps it takes some months to shed the nasty virus bits from our bodies. I have a few autoimmune diseases, but they are controlled by diet, exercise, and such. I hope your LC leaves as well.

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.

A little bit of hope to tell. I have had LC since April 2021. Was so sick I could not use a computer or walk around the block. Then went to Stanford LC clinic and started taking Naltrexone and Abilify. My symptoms are down 75% - back on a computer and took a 5 mile backpack trip - miracle. I'd rather have a cure, but at least in my case management of symptoms has been amazing.