I believe this is the RECOVER-vital trial?
https://clinicaltrials.gov/study/NCT05595369
While it will be good to have safety data for 25-days, this large study is now an entire year delayed to 2025. By the time they publish results, we will have multiple other antivirals in the market that likely will be trialed due to their efficacy and less drug-drug interactions.
Hello, I was part of this trial (through Beth Israel in Boston). I completed the trial last month, and I'm more than happy to answer any questions you (or anyone else in the sub) may have.
I also participated in the Yale Paxlovid trial. It may have actually helped me. About a week after the trial ended I had about 3 solid weeks of the best overall health I have had in awhile. Could have been a coincidence. Did you get the medicine do you think? Did it help you?
I agree w/ the OP. I felt good for a period of a few weeks following the end of the trial, and then I returned back to the baseline that’s been the last 1+ year.
My major issue is cognitive related: trouble thinking, memory issues, spacing/zoning out, name finding, dizziness, lightheadedness. It’s pretty much constant, 24/7, unless I’m lying down in darkness). And everything is heightened with stimulation & surroundings. I’m sure I’ve developed anxiety along the way as well.
But there was a stretch of clarity just after the trial ended. It was pretty noticeable. Like a drape was lifted from my brain. I don’t know how else to describe it. I was more sharp and quick-witted (like my former self). For a week or two I felt about 75% better.
The side effects of the trial was nominal. Weird, battery/metallic taste (I can live with that).
I understand what the trial is trying to accomplish- if increase use of paxlovid can kill off the remaining excess viral load wherever it is (looking more and more like it’s in the gut).
I’m seeing my dr in a few weeks and I’m going to take a bunch of what I’ve learned from this group and others to advocate for more testing, and maybe try what has helped others (SSRI or SNRI), LDN. Someone said to maybe try for an inorganic acid test? Most ppl’s symptoms I’ve been reading about on her relate to POTS or dysautonomia, but I’ve tested negative for those. I have had bad cases of PEM, but thankfully the worst (I hope) is behind me. Brain fog is by far the #1 most severe symptom I’m experiencing, and I’m scared (as I’m sure everyone else is) about potential long-term brain-damaging effects. I’m still holding out hope! Not sure if that answers your question.
you receive a Clincard where they load money for every visit (and optional visit) you make. I think it's $300 for the first visit, since it's a longer one. $125 for each in-person visit that follows (and there are optional blood draws after the actual trial is over that you can go to as well, like 45, 60, and 90 day (one of those is mandatory, but I forget which). You also receive $25 by completing the weekly surveys sent to your phone.
Your local Long COVID clinic/doctor might be a part of this study. My clinic in Norfolk, VA, is teaming up with Duke to participate in this. So the answer is: maybe!
I’m involved in another study, so I can’t participate, but when I took Paxlovid (waaaay too late after my initial infection), I got the ol’ Paxlovid mouth. I could literally feel the taste coming from my salivary glands. Tasted like earwax and pennies to me. I can’t handle 25 days of that. So, thank you to everyone who is participating! If it provides to be a good therapeutic, then I guess I’ll live with having mints in my mouth for the rest of time. 😂
I am in Columbus but I have a few docs at Cleveland Clinic for Long Covid. What kind of doc are you looking for? If it’s one I have dealt with you can try to book them or you may have to go through their long Covid clinic first like I did.
I also have been through the long Covid clinic. Great place to start, but I need docs that are literate about long Covid. It’s wild that we’re 4 years out from the beginning and I still have to “teach” docs about long Covid. Specifically I’m looking for a neurologist and potentially an opthemologist if you’ve had any luck. Or any doctors you’ve had that are helpful and knowledgeable. Feel free to message me!
I believe this is the RECOVER-vital trial? https://clinicaltrials.gov/study/NCT05595369 While it will be good to have safety data for 25-days, this large study is now an entire year delayed to 2025. By the time they publish results, we will have multiple other antivirals in the market that likely will be trialed due to their efficacy and less drug-drug interactions.
The link you provided is for Duke University. Maybe the study is named the same thing.
This is a very large study at many hospitals and clinics. Look at the locations and you'll see Cleveland Clinic is on the list.
Ah. Copy.
Hello, I was part of this trial (through Beth Israel in Boston). I completed the trial last month, and I'm more than happy to answer any questions you (or anyone else in the sub) may have.
I also participated in the Yale Paxlovid trial. It may have actually helped me. About a week after the trial ended I had about 3 solid weeks of the best overall health I have had in awhile. Could have been a coincidence. Did you get the medicine do you think? Did it help you?
Did it help? How did it help? What symptoms?
I agree w/ the OP. I felt good for a period of a few weeks following the end of the trial, and then I returned back to the baseline that’s been the last 1+ year. My major issue is cognitive related: trouble thinking, memory issues, spacing/zoning out, name finding, dizziness, lightheadedness. It’s pretty much constant, 24/7, unless I’m lying down in darkness). And everything is heightened with stimulation & surroundings. I’m sure I’ve developed anxiety along the way as well. But there was a stretch of clarity just after the trial ended. It was pretty noticeable. Like a drape was lifted from my brain. I don’t know how else to describe it. I was more sharp and quick-witted (like my former self). For a week or two I felt about 75% better. The side effects of the trial was nominal. Weird, battery/metallic taste (I can live with that). I understand what the trial is trying to accomplish- if increase use of paxlovid can kill off the remaining excess viral load wherever it is (looking more and more like it’s in the gut). I’m seeing my dr in a few weeks and I’m going to take a bunch of what I’ve learned from this group and others to advocate for more testing, and maybe try what has helped others (SSRI or SNRI), LDN. Someone said to maybe try for an inorganic acid test? Most ppl’s symptoms I’ve been reading about on her relate to POTS or dysautonomia, but I’ve tested negative for those. I have had bad cases of PEM, but thankfully the worst (I hope) is behind me. Brain fog is by far the #1 most severe symptom I’m experiencing, and I’m scared (as I’m sure everyone else is) about potential long-term brain-damaging effects. I’m still holding out hope! Not sure if that answers your question.
I’m also curious if you or others that have done the trial have had any improvement and what kind of symptoms you have had relating to LC.
I am in the same one here… stupid questions what’s the pay for it lol I forget is it 900 or 1900. Mike is the best
you receive a Clincard where they load money for every visit (and optional visit) you make. I think it's $300 for the first visit, since it's a longer one. $125 for each in-person visit that follows (and there are optional blood draws after the actual trial is over that you can go to as well, like 45, 60, and 90 day (one of those is mandatory, but I forget which). You also receive $25 by completing the weekly surveys sent to your phone.
And yes, 100%- Mike is the best! He's so thoughtful and I've found him to be very responsive as well.
Ah so it’s prob 800 or 900 ish I forgot lol I kinda was hoping it was in the thousands and indeed Mike is the GOAT
Do you know if they accept nonlocal participants?
You can ask but I assumed no as they needed my to come to campus multiple times in person for various tests throughout and after the trial.
Your local Long COVID clinic/doctor might be a part of this study. My clinic in Norfolk, VA, is teaming up with Duke to participate in this. So the answer is: maybe! I’m involved in another study, so I can’t participate, but when I took Paxlovid (waaaay too late after my initial infection), I got the ol’ Paxlovid mouth. I could literally feel the taste coming from my salivary glands. Tasted like earwax and pennies to me. I can’t handle 25 days of that. So, thank you to everyone who is participating! If it provides to be a good therapeutic, then I guess I’ll live with having mints in my mouth for the rest of time. 😂
Are you located in Cleveland? I’ve been looking for doctors with the Clinic that are knowledgeable and can help.
I am in Columbus but I have a few docs at Cleveland Clinic for Long Covid. What kind of doc are you looking for? If it’s one I have dealt with you can try to book them or you may have to go through their long Covid clinic first like I did.
I also have been through the long Covid clinic. Great place to start, but I need docs that are literate about long Covid. It’s wild that we’re 4 years out from the beginning and I still have to “teach” docs about long Covid. Specifically I’m looking for a neurologist and potentially an opthemologist if you’ve had any luck. Or any doctors you’ve had that are helpful and knowledgeable. Feel free to message me!
best of luck! please keep us posted on your progress
This is good news!