Long time lurker, first time poster.

I've been sick with Long Covid since May of 2022. I have tried pretty much every treatment I can think of with little relief of symptoms. I suffer from chronic headaches and extreme light sensitivity; I can't leave the house without theraspecs and a hat and then I can't be in the sun for very long. I have body aches every day. My body FEELS inflamed. I have MECFS, which is probably my worst symptom. I am SO SICK AND TIRED of being SICK AND TIRED. Subsequently I've had three infections in the last 2 months requiring antibiotics (just from being out in the world). I just got over a c-diff infection that lasted 6mo and I still have post infectious IBS from that infection. I can't get out of bed without 30mg of Vyvanse. My depression has become treatment resistant. I might try ketamine next, but I don't have high hopes.

I've been seen at UCLA in their Long Covid program. At my last appointment they said "We have nothing more to offer you. This disease has no cure. You could try Stanford." It took me 4 months to get into that program and I took a 6mo leave from work. I paid a doctor $5,000 to be my "concierge doctor" and he helped me get into the program. I've tried Stellate Ganglion Blocks. I've tried IV NAD+, I've tried low dose naltrexone (which DID WORK-- but then stopped working after a few blissful months). I have a great therapist and a great Psychiatric NP. I take about 10 prescriptions and another 8 supplements. I don't even feel like any of it is really working.

I've seen so many people post "I'm just surviving, not living." And that resonates with me so deeply. I'm 43yo. I was never sick before I got Covid, and I've had it 5 times. I'm a nurse, or at least I was, I just had to quit my job. I'm just too sick to work. I've burned through all my savings. I just sold my car so I can pay rent. I'm renting my house out but it's just a matter of time before I have to sell it so I can continue to survive, not live. I have legitimately spent tens of thousands of dollars on this disease. Last year I spent $13k alone. And I'm about to lose my health insurance since I've had to quit my job. I suppose disability is an option but I know another nurse who went down that path and it took her 4 years to prove her disability. I don't have that kind of fight left in me.

I feel like no one really truly understands, and that is so invalidating. I'm not willing to continue down this path for much longer. I don't have any hope that there will be treatment for what we have. UCLA was clear that there isn't any government funding for research (yes they are doing some but the physicians doing it came from other places and brought that funding with them).

Which brings me to the title of this saga: how much longer do I have to survive? The quality of life is so so poor. I too, like others on here, have accepted that I will remain alone. I was married. And like others, he couldn't deal. I don't blame him, I wouldn't want to be with me either.

Life is meant to be lived. And I can't live mine. How much longer y'all? How much longer?

Hi everyone,

I’ve been diagnosed with fibromyalgia about 3 months ago, with LC about 1 year ago (tho I got sick 2 years ago)

I’ve been taking LDN for about three months now, this is the one treatment yet that I’ve started and improvement happened.

Overall I haven’t experienced many side effects. I take it at night, and honestly there’s only one side effect—but it’s the worst one I could imagine, especially because I’m a singer.
I’ve developed persistent throat inflammation.
I started at 0.5 mg and increased my dose by 0.5 mg roughly every week (sometimes a little longer). I’ve now been on 3 mg for about two and a half weeks, and since reaching this dose, the throat inflammation has become much worse.
I saw an ENT specialist who performed a flexible laryngoscopy. He said there wasn’t anything seriously wrong structurally, but there is definitely inflammation. He prescribed several things, including artificial saliva.

The main issue seems to be severe dryness of my throat and mucous membranes. I already had dry mouth before starting LDN because I also take ADHD medication, pregabalin, clonazepam, and trazodone at night—all of which can cause dryness. My guess is that LDN has made this problem significantly worse.
For the past week I’ve been doing everything I can: throat oil spray (Larimax), artificial saliva, Iceland moss lozenges, lots of inhalations/steam treatments, Octeangin, anti-inflammatory medication… literally nothing has helped.

I’m also trying to cut back on smoking as much as possible. It’s really difficult because I’m not actually addicted to nicotine—I’m addicted to the habit of smoking itself. Unfortunately, I still end up smoking, but no more than four cigarettes a day.
I’m incredibly frustrated because I can actually see the benefits of LDN, but I honestly don’t see how I can continue increasing the dose when it’s affecting my throat like this. Singing and my band are my life. They’re the one thing that’s keeping me going right now. It’s what I’m holding on to. And LDN seems to be taking away the thing that’s most important to me.

Has anyone else experienced something like this? If so, did anything help?
I’m considering reducing my dose back to 2.5 mg, but it will be hard because I function so much better on 3mg, when you don’t count throat inflammation.
I definitely had some throat irritation at 2.5 mg as well, but it wasn’t nearly as bad as it is now at 3 mg.
I’d really appreciate hearing from anyone who’s dealt with something similar or has any advice.
Please help.

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