u/Glittering_Dirt8256

Not sure what to do after neurologist response about LDN

I'm completely devastated. Since age 12 (now 18), I've been dealing with severe neurological and psychiatric symptoms including brain fog, derealization, sensory issues, anhedonia, constant exhaustion. At my worst, I experienced severe anxiety, depression, rage, restlessness, and episodes where I felt unable to think or process entirely. I ultimately had to drop out of high school despite being a former gifted student with many hobbies and interests. A strict ketogenic diet helped stabilize the most severe psychiatric symptoms, but I still feel cognitively impaired, emotionally flat, dissociated, and unable to function in daily life.

I saw a pediatric neurologist at 17 hoping for answers. My MRI and EEG were normal, and she recommended cognitive testing, but my family refuses to pay for it since insurance won’t cover it. My family has generally been dismissive of my condition, and I’ve had to advocate for myself which has been incredibly difficult with my cognitive struggles.

I recently sent my neurologist a message asking whether she would consider low-dose naltrexone (LDN). She said she’s open to discussing it, but that she’s not aware of symptoms I have that she would typically use it for. After I explained my symptoms further, she replied that she’s “not aware that naloxone would be helpful” but would be "happy to review other information if [I] have come across information that indicates this would be helpful." Whether she meant naloxone or naltrexone, I'm afraid it doesn’t seem like she’s interested in prescribing LDN. I mean, what are the odds I can convince her if she's never even heard of its use for this purpose?

I'm devastated because I had pinned all of my hope on LDN. I know there are online services like AgelessRx, but I feel overwhelmed trying to navigate everything alone. I may be 18, but mentally I feel much younger because of the perpetual state of confusion I've been in for six years. My family offers no support beyond driving me to appointments. My life doesn't feel worth living if I can't try this. Even my mom tells me it's not worth living because all I do is "eat, sleep, and poop." It's hard to not believe it. My symptoms are so severe that I can barely even manage those three things. I feel very hopeless.

Edit: I just want to say thank you all for the kind words, support, and advice. I sent my neurologist a couple of peer-reviewed studies at the suggestion of a couple of commenters, and I will be taking all advice into account. Thank you all for caring.

reddit.com
u/Glittering_Dirt8256 — 12 days ago
▲ 6 r/CIRS+1 crossposts

Could LDN help if still living in mold?

I've heard it said that no supplement will help until you move, but I can not move. Has anyone who hasn't left exposure tried low-dose naltrexone and found it helpful? I plan to make an appointment with my doctor to discuss starting it, but I'd like to know if it's a waste.

reddit.com
u/Glittering_Dirt8256 — 11 days ago
▲ 2 r/MCAS

Originally posted in r/AutoImmuneProtocol, but crossposting isn't allowed, so I copied the text.

At the start of 2025, I began a ketogenic AIP diet to combat my neuroinflammation, and for a little while, it was extremely effective. I felt practically cured for a short period of time. But slowly, I have been regressing. My symptoms are no longer nearly as well controlled, and I've been really struggling again. Additionally, it seems that my food senstivities have been gradually increasing in number.

I used to be able to eat chicken, salmon, a variety of low-carb vegetables, bone broth, avocados. First, I stopped being able to tolerate salmon, avocados, and bone broth due to what I assume to be histamine intolerance. Practically the moment any of these foods touched my lips, I would feel extremely bloated and full, taste metal, and my face would feel warm. That left me stuck with chicken and vegetables for a while. But then, I slowly began to develop reactions to different vegetables. Crucifers caused immediate intense bloating, and leafy vegetables and fennel caused my mouth to go numb. The past couple of months I have mainly been eating chicken and drinking shots of olive oil for fat to remain in ketosis. Every now and then I try to reintroduce a vegetable, but it never goes well.

And most recently, I've started having apparent reactions to chicken: bloating, and making my mouth numb and lips burn. But I just continue eating it because I don't know if there's any safer option... I'm not even sure whether it's a histamine issue at the point, or if I am becoming geniunely allergic to everything. I know my chicken isn't perfectly fresh, but I do the best that I can. It's from the farmers' market, which seems beter quality than any grocery I've tried. I take a DAO emnzyme before every meal. And I've been taking a low histamine probiotic for a couple of months because I thought it might help, but it hasn't seemed to.

I just don't undestand what's happening to me. I'm honestly so scared and exhausted.

reddit.com
u/Glittering_Dirt8256 — 18 days ago
▲ 6 r/EMDR

I'm not sure if my experience qualifies as reigious trauma, but as a child, I developed an obsession with religion, despite my family never being particularly religious. I made the decision to convert to Catholicism on my own after attending Catholic schoool. TW for more detail: >!I began to think deeply about mortality and didn't understand how anyone else could not constantly think about death as I did. I developed an obsession/obsessive fear over hell and purgatory. I did extensive research on hell online, it's different depictions in literature and in different religions, etc. I saw many disturbing visual depictions of hell. This was at the age of 8-9 years. I began barely sleeping, staying up 4 am, trembling in fear because I believed this to be a real place. !<>! I didn't understand how anyone could stay sane believing in this. Even in one is confident in there own salvation, I couldn't understand how anyone could carry on knowing that most of the world will not be saved. To be honest, I still don't.!<

But eventually after a year or so, it was as though my mind suddenly didn't allow me to think about such things anymore. Ever since, if I try to think about>!​hell!<, my mind just blocks it out. It doesn't feel real to me anymore. I'm pretty much unfazed by the words that used to torment me. I still identify as a Christian, though not Catholic anymore, and I know >!hell is real!< but I can't actually think it's true.

I've since developed a lot of serious health issues and strongly suspect I have CIRS from biotoxin exposure. I have many debilitating neurological issues, including chronic brain fog and derealization and emotional blunting which have disabled me and robbed my quality of life. These symptoms didn't develop immediately, but emerged several years after the events I described. I honestly never considered my dissociation around religious topics being related until I learned that people with chronic illness are far more likely to have endured trauma and many find addressing the trauma improves their conditions. It makes me wonder if perhaps never resolving these issues from my childhood has made me more susceptible?

So do you think EMDR could be beneficial for my situation? Or might another option be worth exploring?

Thank you.

reddit.com
u/Glittering_Dirt8256 — 21 days ago
▲ 10 r/CIRS

*adolescence

Just looking to vent, I guess.

I feel like everyone around me has grown and changed so much over the past several years, and I've just been stagnant since the 6th grade, when I was struck with this disease very suddenly. I was robbed of everything that made up my identity. My interest in arts and music and my imagination disappeared, my ability to read slowly diminished. My mind felt totally vacant. I felt like I forgot how to think. I became emotionally blunted and totally apathetic. Throughout middle and high school, I had no interest in anything... I did not care about academics, extracurriculars, dating, fashion (or maintaining my appearance at all), or anything that my peers seemed concerned with. Wasn't into any fandoms, didn't care to follow pop culture or political events closely. I gradually lost my mental faculties and became dumber and weirder, developing autism-like symptoms, OCD, DP/DR, and constant restlessness in my limbs that made being still excruciating. All of eventually resulted in me dropping out of high school junior year. 

I feel like because of what happened to me, I never had the opportunity to experience being a teenager, and that messed me up developmentally. I'm now 18 and feel as though everyone around me has grown and changed so much over the years, and I'm not sure I will ever catch up. I don't know anything about myself, or the world. I never learned to drive. I never developed normal desire for dating or intimacy. I haven't had friends in so long, I don't know how to relate to my peers in the slightest... But more than anything, I'm bothered that I want to get closer to God, but I struggle to understand the Bible or how to apply it to my life. I feel like I don't have much of a life at all, and I don't have the energy to really change that.

I just feel so alien and alone being expected to fit into this adult world now, when I never had the chance to grow up. The only people I feel comfortable with and not so strange around are little kids, because they don't make me feel like I'm too simple or weird or immature. But communicating with anyone can be challenging due to the constant brain fog, low level derealization, and weird unnerving buzzing sensations in my body. I've made really meaningful strides since commiting to a strict anti-inflammatory diet and taking therapetic dose fish oil, but it could not cure me. I think I'm going to try LDN soon, and I hope it helps more. Leaving my environment or getting help from a FMD is not an option at this time since I'm dependent on my parents and they do not understand the seriousness of my condition, so I'm just trying my best. Thanks for listening if you've read this far.

reddit.com
u/Glittering_Dirt8256 — 23 days ago

Hi all, I've been dealing with an array of neuropsychiatric symptoms for the past six years that I know to be caused by autoimmunity. I've made great strides with a medical ketogenic diet and other nutritional interventions, but still suffer from debilitating brain fog, fatigue, and sensory sensitivities. While I know it's controversial, I strongly believe I have CIRS from toxic mold exposure; however, I'm unable to leave my environment because I'm too sick to work, go to school, or drive, so I'm still fully dependent on my parents as a young adult.

I've heard amazing things about LDN and have been starting to think this might be my only chance at achieving independence and getting out of here, but I have a couple of qualms. For one, I have had extremely negative experiences with medications in the past, having tried lots of psychiatric mediations before realizing my mental health problems were a manifestation of neuroinflammation. I have had severe and rare side effects across multiple medications of different classes, including hallucinations and convulsions. Even on starting doses and lower. The last meds I took messed me up so badly, I had sworn off medications after that. I react strongly to supplements, too. I once mistakenly took full spectrum CBD, instead of broad spectrum, containing maybe 1mg THC, which resulted in a horrible panic attack, visual distortions, and calling 911 because I was convinced I was dying of hyperthermia and felt like my body was on fire. So naturally, I'm terrified to start any type of medication again.

Number two. I have very severe senstivities to gluten and dairy to where if I am exposed to even trace amounts, I experience incredibly vivid and horrific nightmares and hypnagogic hallucinations. I haven't been exposed in a long time, but the last time it happened and I experienced one of these nightmares, I woke up geniunely suicidal. The events in the dream I won't describe, but it was some of the worst terror I've felt, and it felt more real than real life and as though I was trapped in my dream for nearly an entire day. I've heard many people describe similar experiences with LDN, and I don't think I could deal with that again if it came back. I honestly still kind of dread going to sleep each night because of my past experiences.

Would taking LDN in the morning prevent the vivid dreams side effect? I've heard some people suggest it but have yet to see confirimation on whether it actually eliminates the side effect.

I'm sorry if this is poorly written, I'm very tired at the moment but really wanted to get this out. Thanks

reddit.com
u/Glittering_Dirt8256 — 25 days ago
▲ 6 r/CIRS

my brain is completely ruined, and no, i haven't left the enviroment, as i'm dependent on my parents financially. I went completely insane over the course of six years, resulting multiple psych ward visits. last year, i went on an extremely strict diet and later started taking high dose fish oil (now taking 4g daily), and it took away my symptoms of severe mental illness, which I'm immensely grateful for, but unfortunately I still suffer from debilitating brain fog, fatigue, and sensory sensitivities.

I'm desperate to get better, just enough so i can get a job and make money to leave, but it's virtually impossible right now. i am a high school drop-out. i tried going back for just a few hours a day last year, but it wore me out so badly i felt physcially ill and weak by the end of class. i couldn't keep up with my work despite being in special ed classes (i used to be an all honors student in the gifted program, to give you an idea of the extent of my deteroriation) and when i got home all i could do was lay in bed. i eventually had to quit because i was starving myself due to not having the energy left to eat, yet my family still berates me for "not trying." but i used to love to learn, and the fact that i can't anymore makes me depressed.

i heard quercetin can help with inflammation by stabilizing mast cells, especially iso-quercetin, but ChatGPT says since I'm already taking omega-3's I'm unlikely to notice anti-inflammatory benefits from quercetin. Is this true? I know AI is prone to mistakes, but I don't want to waste money on unnecessary supplements; however, i also know how life-changing an effective supplement can be since fish oil eliminated my self harm urges and more. additionally, i plan to ask my doctor about LDN at my next checkup in August, but I'm not getting my hopes up for being approved.

i know my gut is also super messed up, as results from a GI-MAP last year showed dysbiosis, and my stools smell like gasoline, but I have no idea how to fix this. Parents won't pay for a FMD. I can't eat fermented foods since I'm pretty sure i have HI, and my diet is very restrictive since I have to stick to keto and AIP to manage symptoms. i have leaky gut as well. i take a low-histamine probiotic, but it doesn't seem to be doing much, if anything...

i don't want to give up, but i'm lost.

reddit.com
u/Glittering_Dirt8256 — 26 days ago

my brain is completely ruined, and no, i haven't left the enviroment, as i'm dependent on my parents financially. I went completely insane over the course of six years, resulting multiple psych ward visits. last year, i went on an extremely strict diet and later started taking high dose fish oil (now taking 4g daily), and it took away my symptoms of severe mental illness, which I'm immensely grateful for, but unfortunately I still suffer from debilitating brain fog, fatigue, and sensory sensitivities.

I'm desperate to get better, just enough so i can get a job and make money to leave, but it's virtually impossible right now. i am a high school drop-out. i tried going back for just a few hours a day last year, but it wore me out so badly i felt physcially ill and weak by the end of class. i couldn't keep up with my work despite being in special ed classes (i used to be an all honors student in the gifted program, to give you an idea of the extent of my deteroriation) and when i got home all i could do was lay in bed. i eventually had to quit because i was starving myself due to not having the energy left to eat, yet my family still berates me for "not trying." but i used to love to learn, and the fact that i can't anymore makes me depressed.

i heard quercetin can help with inflammation by stabilizing mast cells, especially iso-quercetin, but ChatGPT says since I'm already taking omega-3's I'm unlikely to notice anti-inflammatory benefits from quercetin. Is this true? I know AI is prone to mistakes, but I don't want to waste money on unnecessary supplements; however, i also know how life-changing an effective supplement can be since fish oil eliminated my self harm urges and more. additionally, i plan to ask my doctor about LDN at my next checkup in August, but I'm not getting my hopes up for being approved.

i know my gut is also super messed up, as results from a GI-MAP last year showed dysbiosis, and my stools smell like gasoline, but I have no idea how to fix this. Parents won't pay for a FMD. I can't eat fermented foods since I'm pretty sure i have HI, and my diet is very restrictive since I have to stick to keto and AIP to manage symptoms. i have leaky gut as well. i take a low-histamine probiotic, but it doesn't seem to be doing much, if anything...

i don't want to give up, but i'm lost.

reddit.com
u/Glittering_Dirt8256 — 26 days ago