LDN Diary: My experience as a UC-er trying LDN (low-dose naltrexone) as an adjunct therapy

[magicbeans]

Day 10 of 1.5mg LDN, April 2, 2023

I've been taking 1.5mg before bed and have been waking up feeling grumpy, groggy, foggy, and tired. I'm a natural morning person and I find this change very strange and uncomfortable.

 

[magicbeans]

Day 11 LDN, April 3, 2023

I switched my dose to the morning and WOW, what a difference!!! No grogginess, no grumpiness, no tiredness upon waking. I am naturally a morning person and my theory is that morning people should take LDN in the morning.

I've also noticed that LDN seems to make it more difficult for my body to metabolize CBD, so it's better to take these two very far apart. I take CBD in the evening before bed.

 

[magicbeans]

Day 15 LDN, April 7, 2023

1.5mg taken upon waking on an empty stomach.

The LDN has a profound effect on my mood. I've always been prone to Bipolar 2-like mood swings which occur over the span of about a week. I've never been formally diagnosed, but pretty much met all the clinical markers for Bipolar 2 in my teens and twenties. Several days of despair, followed by 1-2 days of euphoria that didn't quite reach full-blown mania. As I age into my 30s, these mood swings have continued, but have become much more subtle.

The LDN seems to recreate these mood swings, but over a scale of 12 hours, rather than a scale of 1 week. For a few hours I will feel a small amount of fogginess or despair (anhedonia), and then the anhedonia rebounds and I feel en energetic micro-mania/euphoria. I must say that the despair is very difficult to endure, and if I didn't have a meditation practice, the despair might even be very dangerous. But for me, I get through the couple hours of despair with mindfulness knowing that it will end.

The rebound effect will feel both energetic and euphoric, with one of those feelings being dominant depending the overal feeling-tone of my day. Yesterday the rebound effect was very energetic and I was able to do some extremely productive programming work in the evening (very hard for me to code in the evening usually). Today the rebound effect is extremely euphoric, and I feel a great sense of calm and wellbeing.

Note: it seems like when I take the LDN on an empty stomach, the anhedonia is almost undetectable (presents as a mild nausea and tiredness), and the rebound euphoria occurs less than an hour after dosing. When I take LDN with food (as I did yesterday), the anhedonia happens about 5 hours after dosing and lasts for about 2 hours, and the rebound euphoria happens about 10 hours after dosing. Definitely prefer empty stomach dosing!!!

I have the intuitve sense that these rebound periods of euphoria-energy are what induce mucosal healing in the gut, and the magic of LDN is that it produces this euphoria in the body on a consistent daily schedule. That's also why it would, in theory, take a few months to resolve physical UC symptoms. Can't wait for my August bloodwork to compare with the bloodwork I got a couple days ago!!

 

[MrWheat]

Day 11 LDN, April 3, 2023

I switched my dose to the morning and WOW, what a difference!!! No grogginess, no grumpiness, no tiredness upon waking. I am naturally a morning person and my theory is that morning people should take LDN in the morning.

I've also noticed that LDN seems to make it more difficult for my body to metabolize CBD, so it's better to take these two very far apart. I take CBD in the evening before bed.

How do you know how well CBD metabolizes?

 

[magicbeans]

How do you know how well CBD metabolizes?

I know when it metabolizes poorly because I wake up feeling hungover. This usually happens when I take too much, or when I take it at the same time as the LDN (probably because the LDN reduces the amount of receptors the cannabinoids can bind to, thereby creating more unbound, "free" cannabinoids in my body that end up overwhelming the liver).

 

[magicbeans]

Day 50 LDN, May 22, 2023
4.5mg daily, taken on an empty stomach first thing in the morning. I wait at least 1 hour before eating so the LDN has time to metabolize a bit.

I'm now almost two months into LDN. The only negative side effect I experience is a very mild nausea around the time I take the LDN, but TBH I'm often nauseous before eating anyway, so it might not even be the LDN.

I've seen a huge shift in my motivation this week. I was able to do today, in just one day, several errands which I have been putting off for the past six months. Including enrolling in a Calculus course I've been wanting to take for a whole year and weeding my terribly overgrown garden. Until today, I just didn't have the motivation to complete either of these tasks.

I have an absolutely wild amount of energy. Way too much energy. More energy than I even know what to do with. It's strange. I'm so accustomed to navigating my constant fatigue and dread of doing things, but now I'm feeling just the opposite: having completed my huge pile of chores and work, my reservoir of energy and motivation still feels full.

My physical UC symptoms are about the same. Still seeing blood in the stool, but only going once a day and the stool is solid. One positive change is that I'm not feeling any urgency or cramping in my colon, so that's great.

I must say, feeling THIS MOTIVATED is such a wonderful new feeling for me. This week, I have felt like the superhero alter-ego of my usual fatigued, listless self. I hope this motivation and energy persists. It's hella useful.

 

[Pangolin]

This use of the rebound effect is fascinating.

 

[magicbeans]

Day 72, June 13, 2023
Still 4.5mg daily, taken on an empty stomach first thing in the morning.

I've noticed something interesting. I'm pre-diabetic (genetically prone, since I'm underweight with a low BMI). I check my blood sugar after most meals. I've noticed that my blood sugar has been pretty normal after meals in the last few weeks, even when those meals are LOADED with carbs.

I had a giant plate of pasta for lunch today, and my 1-hour post prandial blood sugar was 106, and my 2-hour post-prandial blood sugar was 96. Is the LDN reducing my hyperglycemia? Or is improved blood-sugar the result of generally eating less frequently because of LDN-induced appetite reduction??

Not sure. But this is my anecdote of the day!

I still can't really tell if this is all just one massive placebo effect, or if the LDN is really changing my mood/health. I'm still feeling energetic and motivated. I'm still experiencing a reduction in food cravings. I've been sleeping well. My skin is pretty clear... Things are really good for me health-wise lately.

 

[magicbeans]

Day 88, June 29, 2023
Dose increase -- experimenting with 6mg and 9mg

I increased my dose! Increasing the dose was kind of an intuition. I noticed that my inflammation has been worsening (more blood in stool, an inflamed knee), so I thought I would try increasing my dose. I first increased to 6mg, then 9mg. I'm feeling side-effects at 9mg (a mild headache) which I didn't feel at 6mg. So I either need to dial back to 6mg, or perhaps try something between the two (like 7.5mg).

Although I continue to not see much impact on my inflammation or UC, I know the LDN is having an effect on me because my tendency towards binge-eating has been eliminated. I've been a binge eater for over twenty years, and now I can finally eat food and stop when I'm full. I've never been able to do that before LDN.

---

Note: the increase in energy I reported back in May still persists. I have a really good amount of energy through the day, and I am using that energy to get through an accelerated Calc 1 class. I would never have been able to take a math class of any kind, let alone an accelerated one, before LDN!

 

[magicbeans]

Day 205
9mg

Increased to 9mg today. The reason I upped the dose is that I've been experiencing inflammatory arthritis in my right shoulder and right knee, and hoping an increase in dose will help the inflammation calm down. Definitely feeling the damepening of opiod receptors very strongly at 9mg. Was cranky all day. Did not get the usual headache that comes with a dose increase, however.

Will report back once body has adjusted to 9mg. The darkening of my mood has been difficult, but I'm comitted to really getting to know how LDN affects my body and finding the best dose.

Also I got an A- in my Calc 1 class, woohoo!

 

[magicbeans]

Day 206
9mg

Maybe yesterday was a or just my body's initial reaction to the dose increase, because my mood is back to normal today!

I feel happy and patient and content again! 9mg feels like the right dose.

I have a very, very mild headache which always happens the first few days after a dose increase. It's barely perceptible.

I want to reiterate that for me, it is best to take 9mg first thing in the morning on an empty stomach, and to allow three hours before taking food so that the LDN hits the bloodstream as quickly as possible.

 

[magicbeans]

Day 220
9mg - split dose

I finally figured out the perfect dosing schedule. 4.5mg first thing in the morning on an empty stomach, and 4.5mg in the late afternoon on an empty stomach. This way I get a nice rebound effect all day! No more headache or other side-effects.

I'm in a flare-up right now and my mood is beginning to tend towards depression. Splitting up the LDN dose has really helped keep my mood consistent throughout the day.

 

[magicbeans]

Day 224
9mg - back to morning dose because I just like it better this way!

I'm SO CLOSE to remission! I feel good. My stools are solid. My transit time (time from eating to bowel movement) is still a little short (8 hours vs 12 hours) but seems to be improving. I have good energy, good mood, and no night sweats.

I have been off of Humira for exactly 1 month and my body is holding strong!

The only symptom I have is blood in the stool, although even while on Humira I had that symptom.

I'm taking about a bajillion supplements, but I think they're all helping collectively to help prevent my body from flaring too badly.

We're getting so close to a drug-free me

 

[magicbeans]

Day 232
4.5mg, first thing AM empty stomach

I lowered my dose back to 4.5mg. I noticed that I lost the pleasant euphoria I was getting when I was at 9mg, and lowered the dose back to 4.5mg. It seems like with LDN, lower dosing is better!

My flare is in a neutral place. It's not worsening, but also not improving as much as I'd like. I'm at 2-4 BMs per day, mostly loose stools, mild abdominal cramping, small amount of blood in stool some of the time. I'm trying out some TCM (traditional chinese medicine) herbs to help tip me into healing.

Oh yeah, my inflammatory arthritis went away!! Just one month ago I couldn't move my right arm or bend my right knee. And now I'm back to doing Pilates every other day!! I feel really great! I'm just worried about the blood in my stool and diarrhea. But I'm happy that i'm not getting any worse!

 

[magicbeans]

Day 233
4.5mg, first thing AM empty stomach

I had a really good day today. The euphoria I feel from LDN is definitely back at this lower dose and I am happy about that!

My body is feeling really strong lately. As I wrote yesterday, I still have flare symptoms. Blood in stool and around 4 BMs per day. But otherwise, I'm doing pretty wonderfully. I am strong enough now to do pilates for 90 minutes up to 4 times a week, and I regularly take walks up to 2 miles.

The inflammatory arthritis in my right knee and right shoulder have mostly gone away and my body can move normally again, which is such a wonderful experience. I've been so ill and weak this year that it feels amazing to just feel NORMAL!

I'm able to eat lots of vegetables and brown rice, which I've never been able to do whilst flaring. And I've had enough energy over the last month to cook almost all of my meals from scratch at home! I love cooking and I know I'm in a good place when I am excited to cook.

I wake up around 5:30am or 6am, and go to bed around 9:30pm or 10pm. A month ago I was going to bed at 7pm!!

I'm on no other pharmaceuticals than the LDN. I'm taking a lot of supplements though to help encourage my body to heal.

But I really feel like I'm getting close to drug-free remission. I really do agree with Gabor Maté that chronic stress and trauma in certain personality types contribute to autoimmune disease.

When I compare my life when I was diagnosed in 2018 to now in 2023, everything has changed for the better. Back then I was living in New York City, which was horribly stressful for me. I hated the noise, the filth, the chaos, the awful clausteophobia of having to commute twice a day on the subway. I was stuck at a job I despised, and in a relationship where I had no voice, had to do all the emotional labor, and all for a partner who preferred hanging out with his friends to being with me! I was an alcoholic and a bulimic and so deeply isolated. I had no friends, and my so-called partner didn't even think of himself as my friend. I was just crushed every single day back then. Crushed by the city. Crushed by the pollution. Crushed by my own alcoholism and eating disorder and self-hatred. Crushed by a man who affectionately called me dummy and groped me while I cooked for him every darn night. Crushed by the lack of forest, the lack of fields, the lack of flora and fauna. Crushed by fear of my own heart's deepest yearning.

And now I live blissfully alone with my adorable cat in the peaceful countryside in a beautiful cottage. I don't have to constantly entertain or cook for a partner who never wanted to eat leftovers or take walks. I don't have to be sexually pleasing at all hours of the day for a partner who wanted me to be his mother, his maid, and his lover all at once. I work from home and I live near hundreds of hiking trails and hike whenever I feel like it. I have a sweet little garden and go to the lake or to the creek and listen to the cicadas on quiet summer afternoons. I LOVE my life now in 2023. In 2018, I hated myself and my life.

I am so close to remission. I can feel myself getting stronger.

 

[magicbeans]

Day 250
4.5mg first thing in the morning.

My A1C is 5.5! Back in April of this year it was 6.2!!! My diet has not changed all that much. The LDN is definitely helping stave off a genetic tendency towards Type 2 diabetes!

 

[magicbeans]

Day 307
4.5mg in AM

In early October I noticed that the LDN seemed to have stopped working (I had been taking 9mg each morning for the last few months).

My compulsive behaviors and binge-eating returned, and my mood was much worse than typical. Plus, my UC symptoms were worse (more blood and more cramping), and my skin had broken out badly. This proved to me that the LDN was losing efficacy.

I decided to take a 1 week break from the LDN. That was a rough week. It was like my personality went back in time to my 20s when I was often depressed/manic. I was a nervous wreck. But I knew that the break from LDN had a purpose: reset my "tolerance".

Although many proponents of LDN insist that the body does not develop a tolerance to it, the body is wise and always seeks homeostasis. I am certain I developed a tolerance to my dose of 9mg.

I survived the break and have restarted 4.5mg each morning on an empty stomach.

I feel AMAZING!! The LDN is working again. My compulsive tendancies eased up; my mood improved; my UC cramping stopped (although I am still seeing some blood in stool). And my skin has cleared up dramatically.

So, for anyone who feels that their LDN dose has lost efficacy: I suggest a 7 day tolerance break, and then restart at a smaller dose.

--

Oh yeah, and to give an update on my experiment with quitting the biologic I'm on: the experiment failed. Although my UC symptoms were tolerable, I had developed inflammatory arthritis and painful plantar fasciitis. I got back on the Humira and my extraintestinal symptoms vanished literally the next day after injection.

I am now on the SCD diet. It shows promise so far but nothing dramatic yet. I hope to try weaning off my biologic again next summer when the weather is warm. I will just keep on trying because I do not want to be on a biologic.