r/LowDoseNaltrexone

I’ve been dealing with long-term symptoms including fatigue, brain fog, and tingling in my arms and legs, and I’m currently under Professor Melvin Lobo (long COVID doctor in London) and on LDN (low-dose naltrexone), ketotifen, and guanfacine, which have helped. My dosing has been:

•	LDN: started Dec at 1.5mg → Jan 3mg → Feb 4.5mg → now increasing to 6mg

•	Ketotifen: started Dec at 2mg → increased to 4mg in Jan

•	Guanfacine: started Dec at 1mg → increased to 2mg around Feb

The idea behind these is:

•	LDN → helps regulate the immune system / reduce inflammation

•	Ketotifen → stabilises mast cells (reduces histamine/inflammatory release)

•	Guanfacine → calms the nervous system (helps with “wired” feeling and brain fog)

I’m now doing further testing for deeper inflammatory markers like TNF-alpha, IL-6, and full cytokine profiles to check for an underlying immune/inflammatory driver not seen on standard tests.

👉 If these come back clearly elevated, the plan is to consider:

•	Plasmapheresis → removing inflammatory factors from the blood

•	Targeted monoclonal antibodies (e.g. anti-TNF) → blocking specific inflammatory pathways

👉 Goal:

•	find the specific pathway driving symptoms

•	bring it back to normal

•	allow the body to recover properly

Would be interested if anyone else has had similar testing or treatments.

Im taking LDN for my hEDS, POTS and MCAS. My brain fog and pain has become debilitating, like i literally cant think idk the last time i felt like an actual person.

I tend to react badly to medications. I have a lot of allergies, and tend to get side effects from meds that people dont usually have. Its very frustrating and im worried about starting the LDN. I can only get it at 1.5mg, idk if i can take the capsule apart and try to do even lower? The goal ive been given is 4.5mg but my doctor first perscribed it at that dose without being told to titrate, so, i dont trust to talk to them about help with this med.

I also have CPTSD/PMDD/pretty severe depression and chronic suicidal ideation and wasnt warned that it could worsen on this medication, which also worries me.

What can or should I do to prepare?

I was started on LDN for fibromyalgia 4 weeks ago. I compound it at home (to save money, I lost my job 6 months ago) following my doctors instructions, crushing the pill into a fine powder and mixing with equal parts purified water, then once the filler is all settled down overnight I draw from the water with a syringe and shoot that positively nasty tasting medicine into the back of my throat so I don't gag on the taste.

I was started on 1mg and I had side effects in the beginning like nausea, appetite loss, and some more vivid dreams at first. All of that tapered off within two weeks. Then I increased to 2mg at the 2 week mark and the first night I had drenching night sweats but no side effects since then. In one week I will increase to 3mg.

I don't feel any symptom improvement of any kind yet, I might as well be drinking sugar water, and that is making me worried maybe somehow I did something wrong. I have OCD, which really doesn't help my feeling that maybe I fucked something up. I double triple checked everything though, I did the 1:1 ratio as instructed, I think I did everything right.

Is it possible that it could be less effective when compounded at home? Or do I need to trust the process and keep pushing on to see if it eventually works?

Context: Had long covid 2.5 years, PEM issues only really became big issue in past 6 months. Have managed some part time work recently (just), but luckily it’s term time so I have two weeks off to start LDN.

I started LDN at 0.5ml last Saturday, noticable effects from the get go, decided to drop to 0.25 by 3 days in, as I was a bit too out of it. Had my usual cautious workout on Wednesday as I was feeling ok by then, and had the worst PEM I’ve ever had the past few days. Symptoms improving but very very slowly.

I’m assuming the fact such a low dose has had instant effects is a promising sign, but I’m desperate for any helpful or reassuring feedback right now. I’ve been cooped up on my own in the house most of the time, and it’s hard to stay positive.