Long Covid Diaries: THE SLIP (week three with LDN)

Quick recap for anyone just joining: LDN stands for Low-Dose Naltrexone — naltrexone is normally used at 50mg for addiction treatment, but at tiny doses (0.5–4.5mg) it appears to modulate the immune system and restore function to natural killer (NK) cells. Mine are at 3% of normal levels with multiple viral reactivations after Covid wrecked my immune system. Recent research shows LDN can restore TRPM3 ion channel function in NK cells from long Covid patients, potentially addressing root causes rather than just symptoms. Because I live in a country where doctors looked at me like a drug-seeking weirdo for asking about naltrexone (despite it being literally an anti-addiction medication), I had to source my own 4.5mg capsules. And because I’m doing this unmonitored with severe immune dysfunction, I went ultra-conservative: I divided each capsule into 12 portions using drug-dealer-precision razor blade mathematics. So “1/12” = approximately 0.375mg of Naltrexone, which is even lower than the typical 0.5–1mg starting dose. Week one brought restorative sleep for the first time in my life, vivid visual dreams despite my complete aphantasia, and reduced inflammation — read more about it here: https://thishumanreads.medium.com/long-covid-diaries-the-trip-week-one-with-ldn-6ef421a0df75

And now…

Well. Well. Well.

This week was a slip.

Saturday Night, Day 14

I took my 1/12, went to sleep.

Monday, Day 15: The Rabbit Hole

I feel like all of the wrist/finger joint stiffness is gone. The sleep was spotty, with many long intervals of being awake, but it was somehow also calm. I was able to stay in bed a few hours after I woke my daughter for school, so I feel rested.

But having several hours of being awake while everyone else was asleep gave me time to think. And then to think some more. It sent me down the rabbit hole of other uses for LDN. Turns out, my thinking was based on something real.

A randomized controlled trial found that naltrexone significantly reduced PTSD symptom severity over 12 weeks, particularly symptoms related to hyperarousal and re-experiencing, while low-dose naltrexone improved overall PTSD symptoms. A German study of patients with severe trauma-related and dissociative disorders treated with LDN at 2–6mg daily found that 11 of 15 subjects reported immediate positive effects, with 7 describing lasting helpful effects, and most reported clearer perception of their surroundings, bodies, and lives. Multiple studies reported improved sleep quality, depression, anxiety, and overall well-being among participants receiving LDN treatment for PTSD.

Here are some of the links if you’d like to do some independent reading:

https://getnaltrexone.com/psychiatric-applications

https://www.ldnscience.org/lp/ldn-mental-illness

https://lifewellmd.com/low-dose-naltrexone-effective-ptsd-treatment-guide/

Amazing. No wonder I’m seeing OTHER results too.

I was thinking about how this choice of going with LDN instead of interferons (prescribed by the immunologist) seems to be giving me so much more than I was hoping for. How it is giving me things I wasn’t hoping to get. How I’m actually feeling calm IN GENERAL. And that’s new for me.

This is giving me things I wasn’t hoping to get. I might not just get my body back. I might also get a nervous system that isn’t constantly braced for the next threat.

Tuesday Morning, Day 16: Underwater

I woke up with swollen face, bags under both eyes (more on the left/swollen side), swollen joints — but no joint pain. With an overall feeling of having slept underwater (makes no sense, I know — then again, isn’t this what deep sleep with fluid retention/inflammation feels like?) but still rested.

But this swelling goes down slowly as the day progresses and I’m not feeling worse in any way. No extra tiredness, no crashes, no new pains. Brain still at 100% CPU, no extra energy.

Tuesday night: I just had my 6pm 1/12. All the morning underwater swelling is long gone. I was able to do some laundry and help my daughter with school homework and assignments.

And I just noticed that I haven’t had tingling lips (ones I got every afternoon at 2pm-5pm??? MAKES NO SENSE, I KNOW) in over a week.

Wednesday, Day 17: Finding the New Boundary

This night I had regular, very normal VISUAL dreams. Some nightmarish, but then calm ones. No more Bosch. Woke up with minor under-eye bag that went away quickly, no joint pain.

But then in the afternoon I had to run some errands — actually go to an office of a mobile service operator, stand there for 40 mins and talk. While standing. As it was near the grocery store, I also went in to get some basic groceries. I didn’t have to drive, and I didn’t have to carry anything, but apparently the 40 min standing and talking was too much.

Now I’m in pain all over, slug for brain, painful breathing and a feeling of something stuck inside my neck, blocking the airways — all the fun — everything I used to have daily after any minor errand. Let’s see how I’m feeling tomorrow and what the night brings. I’m still on my 1/12 daily, of course.

Then again, my PEM threshold most definitely HAS shifted. I’ve been doing normal home activities (laundry, helping daughter, cooking soup, basement trips) without crashing all week. That’s more than I have been able to do since post-COVID. But 40 minutes of standing and talking in public? Oops, that went over the new threshold.

Also, that breathing/neck feeling is classic PEM respiratory distress. I’m well aware by now that it’s not an actual airway blockage — that’s just dysautonomia affecting breathing regulation, muscle tension from system overload, and air hunger returning under stress. This doesn’t mean LDN isn’t working. This means my energy envelope has expanded significantly (home activities are now somehow sustainable), but I found the new boundary (40min standing, talking in public was too much).

Pre-LDN I needed waaay less to cause it. And just like it was always with other PEM episodes, it hit like I don’t know what kind of a surprise about 6 hours after the activity. It was sudden and started with zero brain and a feeling that I can’t walk straight, like even if I’m walking straight, it FELT like I’m moving parallel to the ground.

The Sensory Nightmare

And ohhh the PEM joys! Ohhh and I have too much hair on my head and it’s growing in all the wrong directions, and then it’s also touching my ears, and the hair bun is at the same time uncomfortably tight and uncomfortably loose, and my feet are cold but if I put on socks then the socks are touching my skin and can I just please peel my skin off, ohh the joys of sensory nightmares PEM gives.

I took 1/4 of 1mg Xanax. It’s usually enough to make me feel numb-ish.

Thursday Morning, Day 18: Not Dead Dead

I slept well, although I spent the night waking up a zillion times and trying to adjust the fucking PEM pain in hip joints. But I woke up NOT DEAD DEAD. It’s bad, yes, but it’s not all over body and I don’t have fake flu symptoms.

I haven’t tried challenging my brain yet. I will have to later though, when I look at what my daughter’s school works for this week are. Just brushed my teeth and it’s the whole lower back area too that’s in joint/ligament pain. But only that area. I have sliiiiight left side joint swelling back, but it’s really minor compared to what it was every morning, and it doesn’t come with wrist/finger pain.

Last night, Xanax took the edge off, and I just fell asleep. Today, so far skin is safe from being peeled off and hair will not be chopped off either.

Friday, Day 19: The Hangover

Yesterday was tough, but not the absolute worst PEM I have had. It was also weird — it was like coming and going through the day. Like, I’d be in agony for an hour and then I’d be fine-ish for another hour, and then the agony would return.

I did take my 1/12 yesterday, slept well, wanted to sleep longer but noises and cats woke me. Still achy and tired today, but not in all over pain. No swellings anywhere.

I just realized how I feel today. The only thing that is of regular-PEM-level is the lower back/hip/pelvic pain. The rest feels exactly like something I have had only several times in my lifetime — a baaad hangover. I mean like a hangover from being extremely drunk/intoxicated. Not PEM. Not immune collapse. Not systemic failure. Not the terrifying “is this day 2 of 14?” feeling. Just a hangover.

I spent most of the day on couch and moving around as little as I could, napped some. And by the evening, the hangover is gone and the typical PEM pains are going down too. Not gone, just less of them.

It is still MUCH MUCH better than what a typical PEM was pre-LDN! And this is still a VERY fast recovery and very speedy getting better! Not to mention that not having super frequent crashes is awesome.

Saturday, Day 20: Experimental Design

I’m sleepy and tired, but I’m feeling better. I get occasional jaw pain, headache. But this might be the easiest and mildest PEM I have had in forever.

I’m now thinking about what I do next. Do I go up from my 1/12? Do I do 1/10? Do I do 1/8? Do I go all the way up to 1/6?

And of course, there is no way I’m upping anything before I’m 100% certain the PEM crash is gone and resolved. I’m impatient, but I’m not braindead. And of course, I’m not going to muddy the data by changing variables while I’m still in recovery. That would be terrible experimental design.

Sunday Afternoon, Day 21: The Plan

The PEM is definitely almost gone. I was even able to do dishes today and I’m thinking I should shower. Let’s see how that goes. But I’m also thinking I maybe should up my dosage tomorrow already. I woke up with the under-eye bag and the left wrist/finger swelling (not massive, but it’s there) and it’s not going down throughout the day.

My plan for next week (if PEM is 100% gone on Monday): divide a new capsule into 1/8 portions (0.5625mg each), take ONE of those 1/8 portions and divide it into 1/3, which gives me 0.125mg. Add that to my existing pre-divided 1/12. So, for the first three days I’ll be at 1/12 + 1/3 of the 1/8, which equals approximately 0.47mg. Day 4 onwards, I’ll go to the full 1/8, which is 0.5625mg.

Sunday night: I did some dishes and laundry in the morning today. I showered in the afternoon. It’s almost midnight now. The shower didn’t make me crash, it just made me tired for a few hours. I guess the PEM is gone. But will see tomorrow morning for sure.

P.S. The Reading Hallucinations

You did read all about my Bosch dreams, right? And about me having aphantasia, never having had visual dreams?

Today I noticed another new for me thing. With absolute aphantasia, I have never been able to visualize what I’m reading. Today I realized that I’m reading and kinda-sorta-barely-there seeing a flower from the story. Seeing the room from the story.

Fuck, is that how most people read? They read and HALLUCINATE?

I don’t mind it — it’s just wild and entertaining and makes me super curious to see what more LDN can do for me.

If this is what a super ultra-low dose of LDN can do… What more can it do?

Who the fuck knows.

If LDN can restore (regrow?) visual cortex function in someone with lifelong aphantasia, what else is it fixing that I didn’t even know was broken?