Hi there- I've been taking LDN (low dose naltrexone). I actually started taking it about a year before my COVID infection (started taking LDN in 2021, got COVID in November 2022 and diagnosed with long COVID this month), for chronic pain.

I am not familiar with guanfacine, but if you have concerns about trying new medications or a sensitivity to medications, I'd say LDN is worth a try. I have central sensitivity (the central nervous system aka brain becomes hypersensitive to new experiences and things that should not cause pain--the condition has a lot of overlap with long COVID) that affects how I respond to medication, and I was very apprehensive about LDN. But the more I learned about it, it's a very safe and very almost benign medication. The side effects as compared to other things recommended for chronic pain are very mild and even if you have side effects (assuming you start with a low dose and titrate slowly), the half life is so short that it's very easy to stop and wait until your symptoms get back to your baseline.

And this is coming from someone who pondered the idea of taking LDN for months upon months.

My long COVID situation is a little different because I had chronic conditions before my COVID infection with similar symptoms. The symptoms had improved, but with COVID infection got worse than before with even worse fatigue than I've ever had. The lines for me are blurred between whether it's long COVID or COVID infection exacerbating my pre-existing conditions. Originally, my conditions (POTS, small fiber neuropathy, sereonegative spondyloarthropathy--an inflammatory arthritis, and central sensitivity syndrome) were suspected to be brought on after a viral infection. Sadly, we're not surprised COVID infection even after vaccination and with Paxlovid triggered more and worse symptoms.

I shouldn't be awake this late >_

I started low dose naltrexone (LDN) 4.5 mg once daily combined with supplement NAC as per Mayo Clinic protocol. I requested that my primary care doctor in NYC call in the prescription, I feel significantly better: better cognitive function, better sleep, minimal fatigue - functioning as well as pre Covid. Very happy with effect. Safe, negligible side effects. Well tolerated. Effect noticeable very quickly within a week. Good luck !

I’m currently treating symptoms with rufinamide and Guanfacine + NAC.

Can someone please provide an explanation what Guanfacine is supposed to do for LT Covid and also Naltrexone?

Right now I am suffering from severe off the chart anxiety/depression since Covid, weight plummeted down to 89 lbs, I'm trembling and can't even rest or sleep because if I do and close my eyes, my body/mind goes into a 'flight or fight" mode and jolts me up. It's horrible!

I'm on Zoloft and it's not helping at all. My symptoms are extremely worsening since onset of Covid in '21 (I believe I had a case prior but wasn't tested) and I have no support and Docs here in Wisconsin don't have a clue how to even treat this. I'm so very scared and alone.

I was recently told at Mayo I have a groin hernia but they can't do the surgery due to my current weak condition and weight.

LDN is thought to increase endorphins and modulate glial cells (overactive glial cells are believed to contribute to chronic pain). It’s also believed to have an anti-inflammatory effect. From that, people with chronic pain or chronic conditions may be able to have improved symptoms, i.e. improved sleep, pain level, concentration, energy.

I’m not familiar with guanfacine or it’s off-label use for long covid..

I am curious about NAC and it’s recommended dosage for this, if anyone has any information to share about that part of it?

Thanks Emo. The Doc (endo) who prescribed the Naltrexone said he doesn't know how to treat LT Covid, but heard it might benefit, "WHY NOT TRY IT." Truthfully, taking an Rx is serious and you want to know whoever is prescribing it is well aware of the medication and monitoring it for you, due to side effects or titration needs.

The Doc at Mayo who prescribed Guanfacine said the same thing, 'it's good stuff, why not try it." When I heard it could lower blood pressure, I had concerns given mine is already low given my extreme weight loss and he will not return my numerous messages.

My experience at Mayo was terrible, aside from the heart specialist who was such a sweet and caring man and 91 yrs old. I wasted precious time and thousands of dollars going to Mayo. It was a nightmare and talk about stressful! I will admit it is a tight run ship, the building is beautiful but so big with about 18 floors and you're running around miles and miles just to get to one end of the building to the other between many tests and Doctor's offices. In the very end I didn't receive any answers and the Internal MD I saw said he couldn't really help and I should have considered going to the Long Term Covid Care Clinic which I wasn't even aware existed until he informed me as such.

In reading many of the posts and folks that are working with Integrative, Holistic and natural MD's, it appears they are getting better results in treading LT Covid as if you're treating Epstein Barr Virus with L-Lysine, etc.

Makes sense to me since they say folks with LT Covid typically had Epstein Barr Virus, unknowingly and w/o symptoms when they were younger. Apparently, there is testing which can be done to determine if you had the virus and I am going to ask my primary MD to order the tests.

I know back in 1987 I had chronic fatigue syndrome which was not even really known back then and I did a lot of research on my symptoms and connected the Docs in looking for cure on my own. All the Doctors at the time weren't aware of it and said CFS doesn't exist. I found a Doctor in NY (I live in WI) who was treating it intravenously with a cocktail mixture of vitamins, etc. As ill as I was, I few out there alone, got the treatment and it cured it up. I wish I could remember the name of that Doctor! His office was in Manhattan. Doc was brilliant and I bet he's now treating LT Covid

@emo - just send you private message

Hi, I started LDN in March, started at .25 and am now at 1.25, working my way up slowly. I did try the Guanfacine (last month) but it made me really sleepy even at a small dose so I'm just sticking with the LDN. That, plus PT for pain, along with change in diet (lost 22 lbs) and nutritional supplements (mainly vitamins) has helped me a lot. I also use 2 devices to help my nervous system - the Alpha-Stim and the TruVaga. These have helped a lot with anxiety and overall calming down my system. Alpha-Stim uses brainwave technology and TruVaga is a Vagal Nerve Stimulator.
All these except the PT are through a functional medicine Doctor. My PCP referred me to my local LC Clinic a couple of months ago but I have yet to hear from them.
I hope some of what I've said here is helpful! I was in severe GI pain and had terrible anxiety/PTSD type effects, awful brain fog, very bad fatigue a few months ago. I feel about 80-85% better most days now.

@austinshorty -sent you a private message.

To all-what is LDN? is that Naltrexone? I get confused between all the three, i.e., Naltrexone, Guanfacine and NAC that folks are using and Docs prescribing. From what I gather on this forum, NAC is a supplement you buy OTC, correct?