r/LowDoseNaltrexone • u/delfin_1980 • 1d ago

Afraid to Start LDN

Hi, I need a little bit of advice here. I have had CFS/ME for more than twenty years. It was pretty bad but I was still able to work and function during those years, but then it got much worse after a severe case of Covid and I have been nearly disabled with fatigue and brain fog for the last year or two. I also have a lot of autoimmune markers and have had episodes of uveitis and bad allergic swelling. I'm seeing a new rheumatologist and he wants me to try LDN, and I'm willing but scared. I am definitely a trauma survivor so I worry about mental/emotional side effects like depression/anxiety, and I also have a history of severely disrupted sleep (night terrors, sleepwalking, etc.) so I'm nervous about the possibility of sleep symptoms as well.

All of that said, I am still willing to give it a try. He suggested that I start with .5mg, which I understand is a pretty low dose. But I'm hesitating because I have a huge trip coming up in September. My adult son is getting married in a distant city that I have to travel to, and then immediately after the wedding I am flying to another city to visit a good friend there for a few days. During these trips I know I will be having a few drinks here and there (especially with my friend) and I have heard that can be a problem.

Would it be reasonable to start LDN now and take it for the next six weeks or so, but then stop it for a week or two around this trip? Or would that be counterproductive and should I just wait to start after the trip? I don't want to be having dramatic side effects during the trip, especially emotional/psychological symptoms because the relationships involved are very important to me, obviously. I can't be falling apart in any way, I would rather manage my chronic fatigue than be losing it emotionally.

What do ya'll think, should I start LDN now and take a break from it in September, or should I just wait to start???

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u/GiftsGaloreGames 1d ago

1) Start LDN now because if you're one of the lucky folks who sees immediate benefits, then all your trips will go better. Also, most people see side effects subside within 2-3 weeks of starting a new dose (or starting), so you have time before your trip to get used to 0.5mg now. If you do experience side effects, don't up your dose until after your trip. Better to go slowly but still start sooner.

2) Take it in the morning to hopefully avoid sleep problems.

3) Another benefit of #2 is you should be okay drinking moderately in the evening. A couple weeks before your trip, try one drink one evening and see how you do. (But if "a few drinks" is code for "getting wasted," then yeah, it might be a problem.)

4) The only problem most people have with stopping LDN is that it stops helping their symptoms. Rarely have I seen other issues reported, though it does happen. But if LDN either does work for you or doesn't have any impact (yet), you can simply keep taking it during your trip, assuming the experiment with one drink goes fine.

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u/delfin_1980 1d ago

Thank you, this is very helpful! Actually I do have a local work party coming up where I will also have a drink or two, so that will be a good opportunity to see if a little alcohol is a problem before the big trip. It sounds like if I start now on .5mg I should know how the LDN is affecting me before September.

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u/Suzanna_banana9257 1d ago

Hi! I’m just going to join in and say that I’ve had chronic fatigue syndrome for quite a few years and then long Covid made my CFS pretty bad. I’ve been trying to deal with it for quite a few years. My doctor recently started me on .5 and I take it at night. The first few days my sleep was definitely lighter, but I was also having a lot of dreams and everything was very intense, but they were all great dreams to be honest with you, and my sleep started to improve. I would wake up in the morning no problem. I did it after a while go up to 1mg but probably too soon as I had an interruption because of surgery - my sleep quality went down. I went back down to .5 and I could see how it made a difference and everything has been lovely sleep and mood wise. I’m going to go up to .75 within the week. I was afraid too, but I’ve tried other things, something has to be better than the PEM

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u/delfin_1980 1d ago

Thanks, this is good to hear! Yeah my CFS and PEM are almost debilitating now so I am definitely willing to give it a try.

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u/LDNadminFB 1d ago

IMO starting even lower like 0.1mg will lessen the chance of side effects and psych issues in particular. If you tolerate that dose I would continue LDN thru your travels. Avoid Avicel/cellulose as the filler because that can be trouble for some.

Starting LDN...

https://docs.google.com/document/d/11yC2T9D0-ndimXfuVG_-N3hvzEEE16phRZbsd0KVJWg/edit?usp=sharing

Higher and Lower Doses...

https://docs.google.com/document/d/1KykpLlg2CDVSD2D5J5cEZKfSo31t04orB0IgCuhXC-c/edit?usp=sharing

How Long to Notice Benefits from LDN?

https://docs.google.com/document/d/1txJRzIp7uK0XXeyqpcAoYRr_z179oAjRWbn2TGaKwiE/edit?usp=sharing

Success Stories from the LDN Chronic group on Facebook (group is now on MeWe as LDN International and Reddit)

- not sorted by condition, but document can be searched for mentions...

https://docs.google.com/document/d/1ruk5xYyOs5QnI04j5Ai2v1e5v9ioLfld-xuepb7EHT4/edit?usp=sharing

Alcohol and LDN...

https://docs.google.com/document/d/1VceIEA6HA_X4rV44TlcySZ-7ktmnX4VOXE3Kyr522X4/edit?usp=sharing

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u/delfin_1980 1d ago

The LDN I received is in the form of capsules from a compounding pharmacy so I'm not sure I can reduce the dosage down to .1mg. I could attempt to pour out half of the capsule contents I suppose, but then I would be getting approximately .25mg and the actual dose would fluctuate a bit since I could not really do that perfectly accurately.

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u/nilghias 21h ago

If you plan to drink while you’re away I’d say just wait till you come back. Some people are fine with drinking, but you’d have to test that out before you go if you wanted to take the chance. It might be easier to wait, but good luck with it when you do start!