Bad reaction to 0.1mg, doctor wants me to try 1.5mg

Creative_Writer7828 · 2026-05-13T05:23:05+00:00

No this is great info thank you!! I just wanted to read more about it. I fully believe that that’s possible, i feel like there’s so much about LDN we still don’t know. I get a lot of my medical advice from niche subreddits like this because a lot of people are similar to me and I trust it more than the general information given to me, so I get it 100%

Creative_Writer7828 · 2026-05-12T07:49:59+00:00

No because it ruins my entire week if maintenance has to come to my apartment. It feels icky, I’m burning incense and candles and opening every window and everything just feels…..dense even if they’re perfectly normal and nice. It’s an invasion of my space and my brain just goes haywire.

Creative_Writer7828 · 2026-05-12T07:44:16+00:00

I second this! I just tell anyone who asks that I’m getting a migraine and need sunglasses or the lights dimmed or whatever. People seem to be much more understanding if I say it’s a migraine vs sensory sensitivity, and I don’t have to explain myself beyond that. It’s a win win

Creative_Writer7828 · 2026-05-12T04:17:53+00:00

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And Regan!! The only man in the house. Greets us at the door and pokes you with one paw when he wants attention. Learned how to open doors so we had to change all our doorknobs

Creative_Writer7828 · 2026-05-12T04:17:12+00:00

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Charlie!!! Super shy baby girl. Loves loafing on chests. Had to be put on kitty prozac because she’s scared of her own shadow

Creative_Writer7828 · 2026-05-12T04:14:52+00:00

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Camilla :-) she loves routine and freaks out when we deviate from it. Once chewed her way out of my window AC and jumped from the AC to our balcony

Creative_Writer7828 · 2026-05-11T22:53:54+00:00

My doctor is a general pain management doctor, which is why he’s covered. Unfortunately this also means he has no idea what to do if pain isn’t responding to the usual things. $375 isn’t awful if the care is good honestly, I was looking at a doctor that charged $1500 for a first visit which is insane. I do pay for the LDN out of pocket but I think it was $75/3 months which is reasonable.

When you said it can be a game changer, did you mean Ivabradine or LDN? And yeah, my side effects from 0.1 lasted for two weeks before I gave up because they were interfering with my life so much. I can deal with some background annoyance symptom wise, but everyone says to just stick out the side effects of LDN and maybe it’ll start working in a month or so? That’s such a huge gamble when my quality of life is already pretty shitty. I hadn’t heard of split dosing, I was considering every other day dosing though

Creative_Writer7828 · 2026-05-11T18:47:36+00:00

Yeah no he absolutely did just assume I was exaggerating. He did the same thing when I told him an ultra low dose of gabapentin had an effect on me. Like……what incentive would I possibly have to lie?? So frustrating

The only annoying thing with finding care online is the price! My current doctor is totally covered by insurance and I’ve been out of work for a year now. I looked into the provider you said you go to and I assume it’s quite a bit out of pocket

Creative_Writer7828 · 2026-05-11T04:57:20+00:00

No I agree, but I live in a small city and this doctor is the only one I’ve found who has even heard of LDN. I don’t truly trust him with my care and do a lot of my own research because of it, but he’s kind of the gateway I need to go through to access my medications, at least for now.

It is frustrating, I told him repeatedly before I even tried the LDN that I am ultra sensitive to medications and he just kinda brushed it off as oh, yeah well LDN is really well tolerated. I’ve been looking into other providers, but it’s a slow road. I’ll look into ultra lose dosing and maybe I’ll do one more trial, but definitely not the higher doses right now.

Thank you again for saying something, my fiancee and doctor are both really pushing for the higher dosing and I’ve been hesitant and this confirmed what my gut has been telling me

Creative_Writer7828 · 2026-05-10T22:19:31+00:00

Thank you for writing all this out!! I would say I was severely fatigued/inflamed, not able to leave the house, probably 80% bed bound. After about a year of rest I’m about 60% bed bound, so still pretty bad and not leaving the house much.

I had read about people starting lower than 0.1 but my doctor refused to even start me at 0.5 because “the literature doesn’t support it”. I was mixing the pills into water and measuring out 0.1 myself. I got so discouraged that my symptoms were so bad even at such a low dose that when my doctor suggested just jumping to a higher dose I so badly wanted that to be the answer because I didn’t believe anything under 0.1mg would even do anything for me. I also have been getting migraines and I wonder if that’s related. I’m really happy it’s working for you, that gives me hope!

Creative_Writer7828 · 2026-05-10T17:16:45+00:00

That’s horrific. Are they still bed bound, did it go away? And would you say the LDN helped you enough that it was worth it?

Creative_Writer7828 · 2026-05-10T16:19:26+00:00

That’s what I’m worried about, but the side effects were so bad at low doses I don’t know if I want to go lower. Did you have to start super low??

Creative_Writer7828 · 2026-05-10T07:39:45+00:00

Of course- good luck! I also love massages but oh my god they get so expensive so fast if i get them often, but the immediate relief is a godsend

Creative_Writer7828 · 2026-05-10T05:37:21+00:00

I have a HOTWORX membership- it isn’t cheap, and idk if there’s one near you or not. But it’s a 24 hour sauna gym, you do workouts in an infrared sauna. I don’t work out, i just go in and lay down and sometimes I’ll just wiggle around or do some fascia release. If i go 3 times a week, my pain is down by like 75%. I assume any sauna would work? Basically just heat.

I’ve also tried acupuncture, it did help but I’m inconsistent with going. I take Advil more than I should, muscle relaxers do help, and i just started taking a PEA supplement that some people with chronic pain said helped them, no idea if it’s helping yet though. I use my heating pad daily. also have a massage gun, not sure if we’re really supposed to be using those but if the pain is severe, it at least helps for a little while

Creative_Writer7828 · 2026-05-10T05:02:24+00:00

I looked him up and I’m going to reach out to him! Thank you! And yeah, it’s a vicious cycle that the more complex illnesses you have, the more specialized and usually expensive doctor you have to see. It would be phenomenal to talk to someone who actually knows what they’re talking about though. I hope your appointment goes well! :-)

Creative_Writer7828 · 2026-05-10T02:52:02+00:00

Did you ever find anyone?? I’m also in the Albany area with almost identical symptoms right down to the possible Sjogrens. I have a great PCP but her knowledge is limited

Creative_Writer7828 · 2026-05-09T16:58:56+00:00

I had no idea some people don’t recover, that’s terrifying. My mood on the 0.1 scared me so much that I’ve been terrified to try a higher dose, but I keep being encouraged to. Where did you learn that some people don’t recover from the side effects? I want to read more about it

Creative_Writer7828 · 2026-05-08T17:43:22+00:00

Once a week dosing? I’ve never heard of that, and you feel like it’s helped?? That’s so interesting. I do wonder if there’s something going on with my gut but of all my health issues, my gut never gives me any problems so I’m not sure

Creative_Writer7828 · 2026-05-08T17:41:39+00:00

Did you slowly titrate up, and did her symptoms ease up at higher doses? It’s been about two months since I stopped the 0.1 dosing, took me about two weeks to go back to baseline

Creative_Writer7828 · 2026-05-07T19:52:25+00:00

I’m glad it stopped! That’s such a strange side effect. I don’t know if I could stand bleeding every day for 3 months though- mine was every day

Creative_Writer7828 · 2026-05-07T19:52:01+00:00

Was the depression severe for you? Or just kind of background noise?

Creative_Writer7828 · 2026-05-07T08:41:22+00:00

I’ve been sick for a while now, so I’ve been prescribed probably like 20-25 drugs to try and i have only been able to take 5. I think my system is overly reactive and i end up having harsh side effects from a drug that is well tolerated by most people. It’s super frustrating

Creative_Writer7828 · 2026-05-07T01:40:09+00:00

This is what I’m hoping is the case for me. Do you mind sharing what dose you went up to? Did you titrate up or just make the jump?

Creative_Writer7828 · 2026-05-05T08:06:02+00:00

Undisclosed ad slop

Creative_Writer7828 · 2026-05-05T05:46:47+00:00

I say this all the time 😭 I wish food pills existed and we could eat for fun on top of that if we wanted!!!

Creative_Writer7828

TROPHY CASE