If you were fully vaxed + TOOK paxlovid at start, still LC symptoms?

@jeindc Hello JE,

Thank you for sharing all this and I’m so sorry you have developed LC in spite of all of the good precautions you took.

I’ll throw an idea out to ponder. I’m 74 and have had ME/CFS for 40 years. You probably know that ME/CFS and LC are very similar. Most people with ME initially had a virus, and many, myself included, tested positive for the Epstein Barr virus in the beginning . In recent years the EBV virus has come back to the forefront as a culprit not only ME/CFS but also many other neurological diseases- such as MS and others.

More recently, some researchers are finding that a reactivated EBV may also be the key to some Long Covid cases . I’ve been following all this research for the 40 years I’ve been sick and am convinced that the EBV virus (which most of the population has, though it usually remains dormant) could be found to be the link to unlocking many of these mysteries.

Many people with Long Covid had relatively “mild cases”, which begs the question, why?

When I got sick with ME/CFS I tested positive for an acute EBV infection. At the time there were several outbreaks of a mysterious viral illness in local communities involving several hundred people where a certain number of people developed ME/CFS. They never discovered what the initial virus was that triggered it in some people, though many of them did have reactivated EBV infections.

Why some people would get ME/CFS or LC and others not remains a mystery since most people have already been exposed to EBV. But it could be that genetics play a role. And I also have autoimmune thyroid disease and polyneuropathy, which tend to have a genetic component. My neurologist ( from Johns Hopkin) believes that my ME/CFS and neuropathy are autoimmune.

Just curious, have you been tested for and EBV reactivation? Here’s an article about the link between EBV and LC you might find interesting.

Sorry to ramble so long. I understand how frustrating it is trying to solve these mysteries. Wishing you all the best and improved health.
https://www.tandfonline.com/doi/full/10.1080/22221751.2025.2552712

@db72 Thank you for the article. Also having autoimmune thyroid disease and re-activated chronic EBV, would you be willing to share your experience with treatments?

Short answer yes. First time with COVID was Aug 2021 with Delta. Fully vaccinated. Hospitalized for 7 days. Given remdesivir. Fully recovered (I think) after 4-6 weeks. Was going to gym 3 days a week, playing pickleball , traveling, etc. Kept up with all vaccinations. Most recent COVID was Jan 2024, started paxlovid right away. Tested negative after about 5 days. Fatigue was not going away and had body temp swings, but figured it was like last time so just kept trying to push through it (bad idea). Finally had first major crash. Been pretty lucky with medical community in that I was diagnosed right away with long COVID. No one has given me any magic pills or even have a clue as to what to do, but all have listened, ruled out other issues and recognize they don’t have an answer (never dismissed). A year ago I didn’t drive at all and walking to the mailbox was tough. Do most of the local driving now and averaging about 6500 steps per day. Still very conservative/cautious in expending energy (especially lifting) and have some minor setbacks (no major crashes like last year) if I overdo, but living a new normal and feeling like I’m on the right trajectory. Hang in there.

I first had Covid in March 2020, before Paxlovid was even a thing, but recovered fully
I got my first long Covid symptoms - heart problems - from the vaccine in June 2021. Never took Paxlovid with later Covid episodes because I was on too many other meds that didn't allow it, but I did take Lagevrio (molnupiravir) all three of the following times. I still ended up with Long Covid after my fourth episode, in December 2023. 😞

@dido2 Hi. My Hashimoto’s thyroid disease is treated with Synthroid and is stable.
For the ME/CFS, I’ve tried so many different treatments over 40 years that O honestly can’t remember them all.
They included various kinds of diets and many different vitamins and supplements.
Prescription wise, to begin I was on gamma globulin shots for the first two years. I have no way of knowing if they were helping by preventing me to get worse (I was almost completely bedridden the first 3 years).
B12-shots, antidepressants, antivirals (Valcyclovir and Famcyclovir for 3 years- which only made me more fatigued.

Aside from my current thyroid meds, Estradiol, a beta blocker I take for my heart, and Nexium for GERD, the only medication that has truly made a difference is low dose Naltrexone. I’ve been on it 10 years primarily for pain caused by arthritis, fibromyalgia, Me/CFS (muscle aches) and severe Polyneuropathy. I have never had to take anything stronger than an occasional Alieve - which is highly unusual given all my pain issues.

Other than that nothing has ever helped much. I am 100% disabled due to ME/CFS and neuropathy and spend most of the day lying down. I can only stand for about 20 minutes at a time. I must add that over the years I had improved to abt 70% and could travel and enjoy life much more. But this disease waxes and wanes and old age hasn’t helped any, that’s for sure.

@db72 40 years of this, I am so sorry you have had to live with this for so long. You are a strong and inspirational person. Thank you for sharing your experience because there are so many of us in similar conditions and seeking anything that could help.

I was fully vaxed, took paxlovid at the start, and still have long covid 2+ years later.

I was vaccinated 6 mo before when I caught covid on 3/23; I'm 71 and the strength of vaccines tend to wane thru time so I get 6 mo boosters now. I got a 1/2 dose of Paxlovid and did have 8 months of LC after. I don't have as much endurance as before, but no other symptoms. I still exercise an hour a day, just lower intensity. Covid vaccines lessen the severity of covid.

@db72 I have terrible arthritis in shoulders. Pain never goes away. Tylenol doesn’t help
P much . Can’t take NSAIDS CUZ IM a bleeder. Never heard of
Naltrexone for arthritis. I’m in the end of my 7 th week of LONG COVID. I can tasks except I can’t lift, then I get weak, and have to lie down .AM I have more energy. As the day progresses, I get floppier
And floppier. So far no doc has mentioned taking any meds.