Low dose Naltrexone

[bhpilkin]

Hi temple88, thanks for posting, that sounds awful. Was LDN recommended to you by a professional, or self directed? Were you hoping to address any particular symptoms or just for general support.

Also, what dose did you start off with? My therapist is recommending 2g as a minimum, as he says that below that I will likely get the Herxheimer type symptoms but no endorphin increase to offset these.

Hi folks,

I've been trying LDN on and off over the last 15 months, with pretty good results although quite a few side effects too. I'm 34 and have chronic fatigue which I think is due to Mercury toxicity and gut/yeast issues.

I've found this thread really interesting and useful to compare other people's experience with my own.

WildAtHeart, where you mentioned that your therapist recommended 2mg minimum in order to get the endorphin release to offset die off reaction. This really rings true for me, as recently I've been going lower and lower in dose (down to 0.1mg) to reduce herxing and tiredness (temple88 I agree it's not easy following treatments while working in a busy job!!) but finding the herxing not really changing, but definitely less of the endorphin mood boost I was getting at 1mg. I assumed lower doses that I'd still get the same benefits and side effects as before, just reduced. But I'm now thinking that maybe the benefits reduce more with lower doses, so I'm going to try 2mg and see how that goes.

Fingers crossed, I'll report back soon.

Just for the record here is a summary of the benefits I've been getting:

Better mood overall, more motivation and can enjoy hobbies more (must be those extra endorphins)
Much better response to stress and working in a busy job - feel like I'm in a kind of happy bubble!
Better sleep, faster to fall asleep and stay asleep, plus cool sometimes mental dreams!!
Less inflammation (face looks less puffy, don't have 'tight head' feeling I often have)
Stomach/gut feels much better, not inflamed like it often does
Joints feel more supple and sore knee from an old football injury is much better

Side effects:
Strong die off effect which builds up over a few days
Above makes me tired and brain foggy, which makes me anxious when in busy situations
After a few days of taking LDN libido feels much lower (hopefully higher doses will help this one)

Above effects were at 0.1mg every night before bed.
I've also tried daytime dosing and noticed some benefit, but for me I think before bed is best

Thanks and best wishes to all,

Ben

 

[WildAtHeart]

Hi Ben
I have got up to 3mg dose, which is the threshold dose apparently, rather than 2mg, but this has only for about a week, tapering up from 0.5mg every couple of days. So very early days. Sleep has been affected, but was very poor anyway, but I find the die off response very challenging, and like you say it seems to make me anxious when it is happening.

I can't work and am house bound at the moment, waiting for some LDN miracle to take effect. Let us know how you get on, it's good to hear.

Are you on the LDN Yahoo user group as well, there are lots of ongoing discussions there and plenty of people using LDN in all sorts of ways.

Good luck,
Alison

 

[hamsterman]

Just started on this 2 days ago. I guess I'm a prime candidate (Chron's & Chronic Fatigue)
day 1: 2 mg felt extraordinarily good after about 3:00pm... best I'd felt in years, I actually wanted to stand up.
day 2: 3 mg (I know, stupid to go that high)... felt really sleepy all day... (but not in pain). I'll definitely go below 2 for tomorrow.

 

[WildAtHeart]

Hi again everyone. Does anyone have experience of anxiety and panic attacks during the initial stages of implementing LDN? I have been on 3mg for about a week, having tapered up over about 10 days from 0.5mg. Last night I had rampant anxiety, verging on a full blown panic attack lasting all last evening and night, including suicidal thoughts. It's really scary.

Is this normal, and will it pass?
Cheers
Alison

 

[hamsterman]

Hi again everyone. Does anyone have experience of anxiety and panic attacks during the initial stages of implementing LDN? I have been on 3mg for about a week, having tapered up over about 10 days from 0.5mg. Last night I had rampant anxiety, verging on a full blown panic attack lasting all last evening and night, including suicidal thoughts. It's really scary.

Is this normal, and will it pass?
Cheers
Alison

I've seen other say this as well....ex

I had a couple of days of sudden deep depression and anxiety - it was pretty scary as it was so sudden.)

 

[hamsterman]

Wow, just checked the treatment ranking: http://curetogether.com/chronic-fatigue-syndrome/treatments/
Its up to 7th place, and is actually the number one treatment that doesn't involve changing one's habits.

Here are the top 10 out of 279 treatments for CFS

1) Take frequent short rest breaks
2) Rest
3) Spend time in low-stimulation environment
4) Personal development (e.g. learn to say 'no', acceptance, relaxation)
5) Wheelchair
6) Ignore people who think ME/CFIDS is not real
7) Low-Dose Naltrexone (LDN)
8) Avoid biotoxins
9) Diet changes
10) Meditation

It looks like about 60% say it helped them.... I am hoping I become one of the 60%

AND OMG!!!, its # 1 for Chron's!!! Why didnt my GI's recommend this!!!!:
http://curetogether.com/crohns-disease/treatments/


And once again... today (after going back down to 2mg the night before)... at exactly 2:00pm, I feel great, its as if both my Chron's and my CF... just take a break. I am finding myself walking with no feelings of fatigue.... and I am able to sit down with my belt still on... and have no gut pain at all (first time in years). Its strange because before 2:00pm, I feel the exact same as I always do... tired... and with Cronh's symptoms... and it just disappears. I can certainly live with this.... and I hope it doesnt stop... but I am wondering.... why does it not work for me until 2:00pm??? I take the 2mg's at 10:45 pm. Any ideas?

 

[ahmo]

@hamsterman ME brain researcher Jarred Younger highly recommends LDN in his vids. It's been great for me.

 

[Clerner]

Can't say enough about ldn. It has been my miracle in this whole process.

 

[hamsterman]

Just an update.... It is still working well... I think it helps my Crohn's more than the CFS, but the two are linked. Still doesn't work until later in the day... not sure why.... but it does have a gradual onset from about 11ish till 3ish.

 

[IcyBlue22]

Does anyone have advice on timing? 6am has given me some very positive results a few hours later and I'd even have some slightly restored interest in things and minor ability to engage. I take usually 0.6 - 1mg doses. 6pm or later in evening is bit inconsistent. sometimes better mood, sometimes just tired.

I noticed exceptional fog all day today btw but may be related to other things I been taking. Certain days I feel really weak and fatigued from LDn too.

One of the prime benefits is greater ability to feel kindness towards others. More empathy. Biggest benefits I find towards mood are from when i give LDN a break for 3 days and try it up again.

BTW: My LDN is expired by 3 months. Is this much of an issue?

Also are there any safety precautions I should be aware of? Or what supplements/meds to take with LDN? And what to avoid? I have low Testosterone, very low Estrogen, hypothyroid, prone to fungal infections, have chronic allergic rhinitus, likely underlying viruses and extremely unhealthy ghastly looking face and dark circles + red cheeks.

Are things like Sea Iodine, Glutathione, Rhodiola, Hemp Oil, Estradiol cream, Candidase (Protease Thera-Blend and Cellulase Thera-Blend), B vitamins, CDP choline, low dose valium, NAC, safe to take with LDN? I also been taking low dose Parnate which seems to not have issue.

 

[hamsterman]

Does anyone have advice on timing? 6am has given me some very positive results a few hours later and I'd even have some slightly restored interest in things and minor ability to engage. I take usually 0.6 - 1mg doses. 6pm or later in evening is bit inconsistent. sometimes better mood, sometimes just tired.

I noticed exceptional fog all day today btw but may be related to other things I been taking. Certain days I feel really weak and fatigued from LDn too.

One of the prime benefits is greater ability to feel kindness towards others. More empathy. Biggest benefits I find towards mood are from when i give LDN a break for 3 days and try it up again.

BTW: My LDN is expired by 3 months. Is this much of an issue?

Also are there any safety precautions I should be aware of? Or what supplements/meds to take with LDN? And what to avoid? I have low Testosterone, very low Estrogen, hypothyroid, prone to fungal infections, have chronic allergic rhinitus, likely underlying viruses and extremely unhealthy ghastly looking face and dark circles + red cheeks.

Are things like Sea Iodine, Glutathione, Rhodiola, Hemp Oil, Estradiol cream, Candidase (Protease Thera-Blend and Cellulase Thera-Blend), B vitamins, CDP choline, low dose valium, NAC, safe to take with LDN? I also been taking low dose Parnate which seems to not have issue.

Are you just starting? Why the low doses and why split up into two doses? Im not sure I've heard of doing that before with LDN. If you feel like the LDN is losing its efficacy, you might want to gradually increase the dose, to see if that helps.

I've tried lots of different times of the day, but the effect always seems to be roughly the same for me,.... and for whatever reason, its effects are really consistent for me... Im not sure why... I hope it continues though.

 

[Barbiequed]

I just started 4.5 after being on it for 3.5 months. The 4mg was doing well with me I am not sleeping well on 4.5 heafaches. I think I might go back to 4mg for a bit longer.

 

[Iamlaura]

Hi everyone My name is Laura and I am new to the forum. I am 36 and I was diagnosed with MS 2 years ago after spending a month in the hospital paralyzed on my left side. I regained mobility but I am left with extreme fatigue and brain fog. I am still working full time in outside sales traveling a 3 state territory and I have a daughter that turns 3 this month. I must work so I was really excited when I heard about LDN possibly being able to give me my energy and mind back. My alternative doctor knew exactly what it was and was more than happy to prescribe it to me. Started off at 3mg. The first night I had bad insomnia and very vivid dreams and just felt "weird" the next day. Second night I slept great and still felt weird the next day. Last night was my third night and insomnia again and then flu like symptoms. My throats feels closed up and I am exhausted. Did anyone else go through this but stuck with it and have positive results? I purposely started this on a weekend so that I could rest but now it's Monday and I need to work and I feel like crapola!

 

[Barbiequed]

Yes it's normal. If you find takin it at night causes you much misery with insomnia take it in the morning.

 

[XenForo]

I've been a lurker for a few years, and finally read all the posts in this long thread. I'm on my third try, trying out LDN for CFS under the care of a PA at Stanford Medical Center. The first two tries were 1.5mg capsules once a day, during the day. I got really bad fatigue all day and swollen lymph nodes in my neck both times. It was the fatigue that made me stop. But then, after reading this thread, I tried again taking ~2/3 out of the 1.5mg capsules to aim for .5mg. It's been a couple weeks and I'm trying the full 1.5mg dose now. Surprisingly, I seem to be fine. Well, so far. Since the second try with LDN, I've also added Imunovir 500gm and ketotifen 2mg twice a day and zafirlukast mast cell inhibitors. And I took up meditation once a day for 10 minutes. The doc tells me to take it easy, but I seem to be getting away with being active again. However, I still have the occasional day feeling exhausted, in bed all day. So far, that has been after a stressful day where I don't manage my stress very well and I can feel myself holding tension in my shoulders much of the day.

I'm glad this thread is here; the LDN info seems to be very helpful for me so far. So a big thanks!

 

[purrsian]

I'm so glad this thread exists - I haven't read it all, but what I have read so far has really helped me communicate with my doctor and plan my initial treatment with LDN. My doctor had heard of it being used for CFS and FM and has had one patient on it for CFS, but has never prescribed it herself. She asked me lots of questions about how much I knew about it and seemed very impressed at all the research I'd done, so thanks for all your stories and explanations on here!

I'm starting at 0.5mg since I am sensitive to medications (very hard to come of SSRI and salt tablets made me hypotensive, even at low doses) and she'd like me to stay there for a month to ensure I'm doing ok with that. I'm hopeful that I'm a prime candidate for it, as I find nurofen plus codeine really helps my fuzzy head feeling, brain fog, fatigue and overall horrible feelings - I've been taking nurofen plus daily for a few months now, so hopefully LDN will be a safer long term option instead. I'm also one of those "sick without getting sick" people, so hopefully the LDN will help boost my immune system so it can respond to all the random stuff that seems to simmer about in my body without ever going away. I believe my fuzzy head and full ear symptoms are a very low grade infection that has never quite been dealt with, as it originated after a bad flu (first in years, in a time I was overall getting better).

Anyway, hopefully I'll be able to update with some positive news after I start next week

 

[Thinktank]

I've made my own LDN liquid solution with 50mg nodict tablets from sun pharma.

The tablet however does not go fully into solution, there's a lot of residue left in the water.
I'm unsure if that's inactive ingredients or naltrexone itself.

Pubchem lists naltrexone as being water soluble.
https://pubchem.ncbi.nlm.nih.gov/compound/naltrexone
100 mg/mL (as hydrochloride salt)

Does anyone know how to get the tablet fully into solution? Does the water need to warmed up above 25 degrees celcius?

 

[bjl218]

LDN and COMT SNPs

Hi,

I am wondering if anyone has any thoughts on taking LDN with COMT (Catechol-o-methyl-transferase) SNPs? I am homozygous for COMT++ and my understanding is that this results in a lower rate of dopamine clearance (higher dopamine levels). Furthermore, my understanding is that LDN will increase dopamine. If so, is LDN contraindicated in people with COMT mutations? I'm wondering if this could be the cause of the some the anxiety I'm feeling as I titrate up on LDN. I got up to 3.5mg, but had to restart back at 1.5mg due to some of the side-effects (which included anxiety). Of course, I'm just assuming the anxiety was due to the LDN, but it's hard to know sometimes.

Thanks!

 

[Firefly_]

S

I've made my own LDN liquid solution with 50mg nodict tablets from sun pharma.

The tablet however does not go fully into solution, there's a lot of residue left in the water.
I'm unsure if that's inactive ingredients or naltrexone itself.

Pubchem lists naltrexone as being water soluble.
https://pubchem.ncbi.nlm.nih.gov/compound/naltrexone
100 mg/mL (as hydrochloride salt)

Does anyone know how to get the tablet fully into solution? Does the water need to warmed up above 25 degrees celcius?

someone on here mentioned once that the residue was the filler, I also make mine by dissolving the 50 mg tablets and you don't need to warm the water. When I take it I just shake it up first.

 

[Dechi]

I have to comfess, I haven't read the 52 pages of this thread...

But I would appreciate if someone could help me. I am from Canada and I want to convince my doctor to prescribe LDN for me. I found a compounding pharmacy that can ship, so this is taken care of. I need to show my doctor something that will talk to him and reassure him that this is right for me, some kind of protocol for the use of LDN to treat ME. Something written by an ME specialist if possible. It needs to include dosage.

If I get that, he should give it to me.

Thank you !