20 month long Covid nearly cured by getting Covid a second time

Posted by ericy210 @ericy210, Mar 13 4:31pm

FYI- I did 20 months of harsh long Covid, as I’ve documented here. I’ve been in two clinical programs at Northwestern and the NIH Recover long Covid study through UIC. Mostly neurological and inability to form new memories or have normal processing power- tons of tests and doc visits, etc.

In December I got Covid a second time. I had only had the first vaccine and first booster. This time I was prescribed paxlovid. Within the five days, people were saying how strange I seem because I transformed back to the “old me.” In the new psych tests and I’m in my job, my old capabilities have nearly returned (at least for now), so has my ability to park in a Chicago parking garage and not have to take a bunch of photos to find it later.

In MY PERSONAL observations, I see the paxlovid may have “knocked out” remaining Covid in my system, just how autopsies show Covid in the brain and other organs.

In my clinical trials, MY PERSONAL UNDERSTANDING is that the FDA is finalizing clinical trials so paxlovid can be prescribed to address long Covid. Today, the FDA monograph calls for its use within the first five days.

I was recently invited to a blind trial for 25 days of paxlovid- some get a placebo and others get the real deal. I would have done it, but I have back surgery coming up and I don’t want issues with anesthesia, anti-inflamatories, opiates, etc being thrown on top of being a test subject.

My point is to ask your doctor about whether paxlovid is an option. My other point is to say I was defeated and hopeless a few months ago, but I got the gift of Covid and paxlovid. Things may change, but for today, I have a positive outlook. If long Covid doesn’t return, and if my back surgery goes well, this could be a good year.

Don’t lose hope. There’s a lot of work being done to help minimize the impairments from long Covid. I just got lucky- I felt like I had more than a cold, took an at-home test that showed positive, then went to my local immediate care who did another test and gave me paxlovid. I never imagined it would also help my 20 month ordeal.

Obvious disclaimer- this is my own experience and understanding. Talk to your doc.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

janeaddams | @janeaddams | Mar 13 7:24pm

@ericy210 Wow! This cheers me up. I've had LC for 12 months now, typical symptoms, mostly fatigue, brain fog, dizziness, pretty debilitating. Quite a few tests, but no relief after many visits to the MDs at Endeavor Health in Evanston, and now awaiting my first appointment with a neurologist in the LC Clinic at NWMH on April 1. Your story is terrific and I would like to hear more. Please stay connected ... I think people tend to drop out when they feel better so positive news would be uplifting. Thanks, and good luck with your recovery and with the back surgery. If Paxlovid would help me find my way around the parking garage at NWMH, I want it ...

celia16 | @celia16 | Mar 13 9:40pm

I have a prescription. I may take it. It does have risks though.

ess77 - Elizabeth | @ess77 | Mar 15 3:20pm

Hello, all... I had the first Covid infection last July 2023, then again was infected in November 2023. No Covid infection before and had 2 Maderno vaccinations at Mayo Florida when they were first available. No Covid vaccines since and I don't plan on getting any unless my Mayo rheumatologist suggests I do. At this point, he agrees I shouldn't have a vaccine since I obviously have natural antibodies from the infections, and I'm dealing with PMR and GCA taking Prednisone and Methotrexate.

I took Paxlovid with the July infection and recovered well, so I thought. Got over the immediate Covid symptoms and felt better until I didn't. I developed a severe case of bronchitis a few days after feeling better. Took Augmentin and Prednisone for the bronchitis and slowly recovered. The Augmentin was wonderful. I haven't taken that before and found it worked better than any previous antibiotics for chest infections. I also began using Combivent inhaler for the increasing asthma I experienced. It is a wonderful improvement for my breathing with no side effects. Asthma became a front and center focus with Covid and continues to be challenging.

I began to feel better, even began to regain some energy. Then, began to go downhill with more fatigue, shortness of breath frequently during the day, coughing, etc., and in November tested positive again for Covid. I was devasted and very ill. I began the 3-day IV treatments at Mayo with Remdesivir since I previously used Paxlovid successfully, but now again dealing with the infection.

The first day of infusions showed real promise, with a drastic decline in symptoms. Then, pain in the sternum area increased and became an issue, I was going downhill quickly. Increased shortness of breath, increased chest discomfort, overall decline and fatigue.

The infusion staff refused to give me the 3rd IV and sent me immediately to the Mayo ER for tests. Bloodwork indicated I had a lung embolism and needed admittance. After an x-ray, CAT scan of my lungs and heart, I was told no embolism, but I did have Covid pneumonia. Well, pooh! Just kept coming...

I use a bi-pap and 2 liters of O2 nightly at home to keep me breathing well while sleeping due to severe obstructive sleep apnea and autonomic neuropathy. It saves my life and I love it!!!!! Because I use this machine and O2, the ER doctor sent me home to deal with the Covid pneumonia and I received the 3rd IV Remdesivir the following day. This treatment was begun during the pandemic by our Florida gov., who set up clinics throughout the state offering the IV infusions for elderly, vulnerable residents to recover from Covid and avoid hospitalization. It worked and was a life saver. Mayo uses the IV as the 2nd tier of treatment following Paxlovid. Don't know what's 3rd tier! Don't want to find out, either!

I developed PMR, GCA and daily asthma, fatigue, muscle weakness, dizziness, and more ongoing following the 2nd Covid. My rheumatologist referred me to the Mayo Long Covid care with medical evaluation, oversight, treatment, rehab, psychological classes, additional testing-EMG, x-ray, EKG, overnight Oximetry, muscular neurology consult, bloodwork and urine labs, and more as needed. I'm taking 2 mg Prednisone daily and 7.5 mg Methotrexate weekly for the autoimmune disorders that have truly hit me hard. I had a Sarcoid flare with skin rashes, pain, joint flares, and developed PMR and GCA. YUCKY! More pain and debilitation.

I also must add I'm continuing with fatigue, weakness, daily asthma using a Combivent inhaler along with the steroids. I also had a CAT scan ordered by vascular surgery for a check on a splenic aneurysm the doctor's watching that's stable, can be dangerous if they grow. Mine is still small... Also reported a new descending thoracic aneurysm seen previously but no one told me I had this one. This order was a check on it. I have an ascending thoracic aneurysm that's stable at 4.9. Perhaps I'm adding aneurysm due to vasculitis? I'll discuss all this with my thoracic doctor when we visit.

One thing reported in that CAT scan for vascular surgery is a Sporl Tumor in my L1 and moving into my L2. I have no idea what that thing is and have increased lumbar pain that's become quite debilitating and keeps me from moving much. I followed up on this and have an appointment Monday with the Physical Medicine and Rehab department to discuss it and address the symptoms. I don't know if this may have any relationship to Covid or not, but I want it treated to allow me to function.

Well, there you go. Blessings to all, Elizabeth