Problems with LDN-anyone have any advice?

[Misfit Toy]

I started LDN a few weeks ago at .5. I could barely deal with the fatigue and dizziness. I honestly think it brought on dysautonomia for me.

I was then brought down to .1. Well, the fatigue persisted. I was doing horrible. I was so tired, it was crazy.

I then went down to .05. I got worse with horrible pain. I mean, God awful pain. Everywhere. I couldn't sleep due to the pain.

I have had a constant headache. Has anyone run into this?

I am now to go down to .01. This seems crazy.

Has anyone else gone down this low? Has anyone else started at such a low dose? Could you benefit?

As always it is a very confusing medicine and I feel lousy. The variables the doses, etc...who the hell knows.

My rheumatologist makes it out to be a magic bullet. Well, we know how that goes.

 

[Never Give Up]

I'm sorry you're feeling so miserable right now. My son tried it for a while. I do remember that some people had to start at very low doses and slowly raise the dose. The LDN Research Trust has a lot of good information and active patient forums. Take a look:

https://ldnresearchtrust.org/are-you-a-patient

A lot of people say that it is a magic bullet for them. It wasn't for my son. I hope it is for you, and if not, then I hope it at least gives you some improvements.

 

[Misfit Toy]

@Never Give Up -thank you. I am glad in a way to hear to this. My rheumatologist has been pushing it, but it's not agreeing with me. Thank you. I will check out that link!

 

[Old Bones]

As always it is a very confusing medicine and I feel lousy. The variables the doses, etc...who the hell knows.

My rheumatologist makes it out to be a magic bullet. Well, we know how that goes.

@Misfit Toy I'm sorry to read about your struggles with LDN. It's not a "magic bullet" for me either.

In my case, LDN was prescribed by my GP for ME -- not by my rheumatologist for rheumatoid arthritis. Yet, the only benefit I seem to have derived relates to my RA -- less stiffness and discomfort my hands.

I started at .5 mg and increased by .5 mg every month. I was never able to dose at night as recommended since LDN worsened my already-disturbed sleep. Once I reached 2.5 mg, my sleep again worsened despite taking it in the morning. I dropped back to 2 mg, and stayed there until recently when I again tried to up the dose, taking 2 mg and 2.5 mg alternate mornings. Again, my sleep worsened. Not only that, my hands became stiffer and it felt like my RA remission had come to an end. I dropped back to 2 mg and things are back to normal -- at least what constitutes normal for me.

So you're correct when you say it is a very confusing medicine. Why would an extra .5mg every second day bring back the only symptoms that improved at the slightly lower dose? I'm not asking for an answer -- just expressing my surprise that this happened.

Perhaps give the LDN a rest for a bit, and try again. It would seem that if you experience the same on your second attempt, that it's not the med for you -- no matter how much the rheumatologist raves about it.

 

[Misfit Toy]

@Old Bones -Thank you. I have already tried this 3 times. 3 different doses and all with different responses. None working.

I am so anxious from it because it's like trying to learn something that I just don't get. Blocking, clearing, endorphins, herxing, I mean...come on.

I just feel like I have been down this road so many times with meds. Why is nothing ever simple. Every medicine or protocol, it's like we have to become a scientist to get it right.

And then like you...so many will write, I was doing great and then I went back to doing horrible on the dose I was doing great on. Or, if they up it they get sick.

It's so much work. I am exhausted from it. I am going to give it a break. I am just depressed.

More hope dashed.

 

[Old Bones]

It's so much work. I am exhausted from it. I am going to give it a break. I am just depressed.

@Misfit Toy I can't "Like" your post. But, you certainly are justified in feeling depressed. Yes, sometimes the best thing to do is take a break from trying to solve our very complicated and challenging medical problems. You certainly have "your plate full".

Sending warm thoughts your way, with a hope for better days ahead.

 

[alicec]

I started LDN at 0.5 mg. With the first dose I immediately felt it might be doing something for my unstable blood pressure and calming my overactive sympathetic nervous system, but also that this was too high a dose. It made me feel woozy in the head and a bit sedated and hung-over the next day.

I tried reducing the dose and found that I needed to go back to a starting dose of 0.05 mg (1 drop @1 mg/ml) to not feel like the dose was too high.

I built up the dose very slowly at first and honestly couldn't say that I was noticing any benefit, but based on the initial apparently beneficial response, I thought it was worth the trouble of reaching a therapeutic dose and then deciding if the drug made any difference.

I did eventually decide that the drug was very helpful for my OI, BP and autonomic instability so have continued to take it at around a dose of 3-3.5 mg.

Your experience does sound different, in that I at least had positive as well as negative experiences initially. Still if you do decide to give it another go, be aware that starting at a really low dose and building up very slowly over many months can make the drug tolerable if you are very sensitive to it.

 

[Misfit Toy]

I tried reducing the dose and found that I needed to go back to a starting dose of 0.05 mg (1 drop @1 mg/ml) to not feel like the dose was too high.

I was just on .05 and it was not one drop. I bought a 1 ML syringe and it was several drops. That's the dose that made me so sick.

Do you use a 1 ML syringe? I honestly would only take one drop although I don't know if one drop would do anything. I am very sensitive to it. I have a horrific migraine from it and 24 hours after the last dose, I am in so much pain.

 

[alicec]

I was just on .05 and it was not one drop. I bought a 1 ML syringe and it was several drops. That's the dose that made me so sick.

Do you use a 1 ML syringe? I honestly would only take one drop although I don't know if one drop would do anything. I am very sensitive to it. I have a horrific migraine from it and 24 hours after the last dose, I am in so much pain.

Was it a 1 mg/ml solution? Theoretically 0.05 ml should be about 1 drop (roughly 20 drops/ml) but a syringe may not enable you to get enough control.

I make up the 1 mg/ml solution from a 50 mg tablet and use an eye dropper to measure out the drops.

In general the idea to to go to as low a dose as is necessary not to feel adverse symptoms and build up slowly from there, dropping back a bit if adverse symptoms appear.

At really low doses one is unlikely to feel any benefit but hopefully this will happen as the dose increases.

It can be a bit of an act of faith in the beginning and of course not everyone benefits from LDN, so a bit of a lottery.

 

[Misfit Toy]

@alicec -I have a .5 mg capsule and I open it up and put it in a bottle with distilled water. Like 5 ml's of distilled water. Then I would draw up the amount. It was more than one drop but I understand now why yours was one drop. You are getting the actual 50 mg tablet.

I may try it again at such a small dose. I wish I could just wing it and take one drop without knowing what dose that was!

Are you on the FB site-Got E? How are you learning all of this?

Thank you!

 

[Misfit Toy]

 

[Charles555nc]

I started LDN a few weeks ago at .5. I could barely deal with the fatigue and dizziness. I honestly think it brought on dysautonomia for me.

I was then brought down to .1. Well, the fatigue persisted. I was doing horrible. I was so tired, it was crazy.

I then went down to .05. I got worse with horrible pain. I mean, God awful pain. Everywhere. I couldn't sleep due to the pain.

I have had a constant headache. Has anyone run into this?

I am now to go down to .01. This seems crazy.

Lordy, so lets go through things. LDN last I heard, maxes out at 4.5mg , but you still have to work up to the 4.5mg, because it does cause a strong Herxheimer reaction. I would recommend taking some benedryl (a antihistamine)and starting with 2mg of LDN every other day and working up the dose and frequency up as your comfort allows.

i developed a strong Rosacea (redness and sensitivity in the face) from LDN, it was still worth it, but taking breaks and benedryl to calm down the immune system are key. 1200 NAC, 5 grams sodium ascorbate (non acidic, non calcium vitamin C) and a pill of zinc glycinate a day will help mop up the toxins from the chronic infections and herxs.

Latest thing thats been helping me is 1500mg Niacinamide and 600mcg of selenium a day. I also take .5mg of melatonin 3 times a week, to keep my immune system up.

 

[Misfit Toy]

@Charles555nc -yeah, I'm off of it. I was sick as a dog on it.

 

[dancer]

I found LDN helpful for pain and sleep (once I got past the first week of insomnia), but each time I tried it, after a few weeks I got horrible stomach pain. Tried several times and just figured I couldn't tolerate it, which made me sad, because I had found it helpful.

My new D.O. told me LDN can be applied topically. I got mine through Coastal Pharmacy of Savannah. It comes as a skin cream in a syringe (for accurate dosing) and now I'm able to use it.

Just wanted to share for those who might find that works for them.

 

[Charles555nc]

@Charles555nc -yeah, I'm off of it. I was sick as a dog on it.

I had to start and stop several times after starting off at too high a dose. It helps in the long run.

 

[Misfit Toy]

I saw my rheumatologist today who wanted me on it, but after hearing my reaction agrees that I should not be on it. I have to ask you @Charles555nc -what dose did you take, what for and are you very sick?

I am very sick so this matters. I went down to .05. That's pretty freaking low.

 

[Charles555nc]

I saw my rheumatologist today who wanted me on it, but after hearing my reaction agrees that I should not be on it. I have to ask you @Charles555nc -what dose did you take, what for and are you very sick?

I am very sick so this matters. I went down to .05. That's pretty freaking low.

First, correcting vitamin deficiencies is huge towards improvement, the total amount of my improvement, more has come from vitamins and alternative health meds like LDN than from antibiotics. The first vitamin I took in large amounts was zinc and that was the single most improvement I saw, early on. My body literally was not healing anymore. I have been diagnosed with Lyme (after a tick bite but most people dont notice tick bites Ive heard), Chronic Fatigue Syndrome, and Fibromyalgia, but I have making sizeable gains lately and its been years since I passed out. Ive lost weight, leave my apartment without feeling like I'll never make it back, little to no dizzyness. Last few days I woke up at 7am and my sleep schedule has been a disaster for years.

There's a huge number of things I did to get here, and one of them was LDN. One thing Ive learned, at least here in America, is that most people won't go through tough times to improve their health. When I get better, I want to rush out and tell everyone, but i usually run into people who cant be be bothered to try something new, or give up over a "herxheimer reaction" where you feel worse before you get better.

LDN wont cure you, but there is no one drug, one cure solution here. You want to collect maybe 100 things that improve you 1%. LDN is definitely more than 1% improvement. I posted what I remember of my LDN experience above. .1 or .2mg every other day (you could do every it once every 3 or 4 days), as long as you keep up with it, benedryl for the herx/side effects, breaks (like a month off) from LDN as needed, especially if your face becomes red.

 

[TrixieStix]

@Never Give Up -thank you. I am glad in a way to hear to this. My rheumatologist has been pushing it, but it's not agreeing with me. Thank you. I will check out that link!

I was prescribed Ultra Low Dose Naltrexone by my ME/CFS specialist months ago and I reacted badly within 12 hours after my very first dose. A tiny dose! Doctor had me stop taking it immediately.

 

[Misfit Toy]

One thing Ive learned, at least here in America, is that most people won't go through tough times to improve their health.

Hmm. ....I think that is true for anyone in any country, but it also depends on their health. I had my thyroid removed a year ago and the year before that I had my wrist broken, filed in half and had a ligament put in. We are talking extensive trauma. Along with having Sjogrens, CVID...Common Variable Immune Deficiency, etc. Once herx-ing or any reaction causes me to be bedridden, unable to leave my apartment, sick as a freaking dog with pots, something that is usually controlled, I have to stop. WHY? Because I need to brush my teeth, eat and cook dinner and in order to do so, I can't be so sick. I also need to sleep.

That was how I felt on .05 of LDN. Pretty small, no? That's. ULDN dose. So with a reaction like that, I am not so sure at this point.

One of the problems I am seeing with LDN fans is that many of them, not most...but many feel like those who can't tolerate it are WEAK and that is not fair. Like we should just push through even if we are feeling like we are dying.

I am sorry, I am sick enough.

I may try it again, but I am not well enough for LDN. That's the funny thing. I honestly think you have to have a stronger constitution to handle it. You have to be "well" enough for LDN.

One woman posted yesterday on a site that her pain was so much worse on LDN. She received 20 lashing for saying such a thing. That to me is crazy.

 

[Mary]

@Misfit Toy - I tried ldn 2 or 3 times and each time reacted badly. I think my last dose was 0.25, and I never went above 0.5. Each time I reacted sort of like you - I got very spacy, tired, and hated the way I felt. I finally gave up on it. We are all different (and yet alike in so many ways! )

I have been helped by B1, B6, folate, branched chain amino acids and a few other things.

Some people rave about B2 - I tried it, a couple of times, and each time reacted badly so gave up on it.

Have you ever had Nutreval testing done? That's what alerted me to my B6 deficiency, which was quite severe. Medicare paid for mine, it's pretty extensive testing.