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LDN - how's it working for you?

I've been on LDN for...


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Manganus

Senior Member
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Are there any alternatives to this treatment?
What kind of alternatives are you thinking of?

Since no-one understands its mechanism of action, it may be a bit hard to find some medication that works the same way.
...and it would be similarly hard to judge if the alternative treatments had similar unwanted side effects.
;)
 

flitza

Senior Member
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This feels like the most stupid thing I've done in recent years.

I started with 1½ mg/day in the end of April. In one or two days, I discovered asthma-symptoms from my chest, rhonchi and some wheezes, although not particularly alarming. After I got asthma quite sudden and unexpected in my 20s, I've done well without any medication for over five years now. But every now and then, I've noticed some milder symptoms, just as a reminder, so to say.

The last years, I've come down with one longlasting cold each year - each spring, actually - not particularly severe. Ten days after I'd started with LDN, it felt like I'd caught a pneumonia. I do not think it was a pneumonia, but it felt like that. In a few days I've come to feel more miserable than for ages - miserable in the typical way of acute infections of the respiratory tract, that is different than my usual misery (likely associated with generalized inflammation). By then, I'd started to question whether LDN "might have worsened this year's spring cold?"

I made first one day's pause with LDN, then after two more days of medication, I decided to call the LDN-experiment off, at least for now. My condition improved when I paused, and worsened again when I continued with LDN.

Now, it's almost a week later, and I'm quite angry at myself.

The cold-like symptoms have almost disappeared. My nose is no longer runny, pain from sinuses is mild-to-moderate.
But the asthma-symptoms remain. Maybe they are milder It's plausible. But there is a cumulative effect on me: Even if the symptoms get milder each day, the total effect is still that I'm a little worse each day than I was the day before.

I can not know for sure, if LDN is the culprit. But it seems rather likely that my "old" asthma was re-activated by my LDN-experiment.

The for now most important asthma symptom is anxiety.
If I can't control and limit the anxiety, I fear it will end with a serious crash.
Another thought: What is the filler in your LDN. Many compounders use avicel which can cause issues in some people. I've even heard more folks with tree allergies react to it.

This is all not to deny that you might be allergic to the LDN itself. Just a thought.
 

Manganus

Senior Member
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Another thought: What is the filler in your LDN. Many compounders use avicel which can cause issues in some people. I've even heard more folks with tree allergies react to it.

This is all not to deny that you might be allergic to the LDN itself. Just a thought.
I'm most definitely not thinking of allergies. (Although I've no other theory either. I prefer not to guess.)
 
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An update.

Two weeks ago, I decreased my nightly LDN dosage from 9mg to 6mg. My sleep has improved modestly. In particular, when I wake up, I tend to fall back to sleep more easily.

My current doctor has no clue about LDN, so I'm testing this dose change on my own. If the sleep improvements hold, I'll stay at 6mg.
 

bombsh3ll

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I took LDN for the first time last time at 1.5mg and had the night from hell. Never. Again. !!

Although I am not on any opiate medication, I had "withdrawal" symptoms worthy of Trainspotting, starting soon after taking it around 10.30. I was awake all night with nausea, pounding rapid heart rate, palpitations, BP rocketed, sweating, extreme anxiety, headache, chills. I was taking this hoping to boost my own endorphins, thinking they were probably very low.

I had high hopes for it, being an opioid responder when I do take pain meds. To add insult to injury I bought 2 bottles of 30 tabs each as the postage was pricey, and thought I'd give it at least a month, probably going up to 3mg.

Another thing to try crossed off I guess!
 

Diwi9

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I took LDN for the first time last time at 1.5mg and had the night from hell. Never. Again. !!

Although I am not on any opiate medication, I had "withdrawal" symptoms worthy of Trainspotting, starting soon after taking it around 10.30. I was awake all night with nausea, pounding rapid heart rate, palpitations, BP rocketed, sweating, extreme anxiety, headache, chills. I was taking this hoping to boost my own endorphins, thinking they were probably very low.

I had high hopes for it, being an opioid responder when I do take pain meds. To add insult to injury I bought 2 bottles of 30 tabs each as the postage was pricey, and thought I'd give it at least a month, probably going up to 3mg.

Another thing to try crossed off I guess!
Ouch, sorry about that horrid experience you had. I was started on 1.5mg and also had horrible side effects. They did pass, but it was difficult to get through. A friend of mine recently started LDN and her doctor started her at 0.5mg and is increasing very slowly. She has not experienced side effects.
 

bombsh3ll

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Ouch, sorry about that horrid experience you had. I was started on 1.5mg and also had horrible side effects. They did pass, but it was difficult to get through. A friend of mine recently started LDN and her doctor started her at 0.5mg and is increasing very slowly. She has not experienced side effects.
Have either of you had any positive effects from it? I don't think I could touch it again at any dose.
 

Marc_NL

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I took LDN for the first time last time at 1.5mg and had the night from hell. Never. Again. !!
I once started 0.5 mg and also had this "night from hell", after that three of the best days I had in a long time.
After that the effect faded away.
Every time I increased the dose I felt something similar but never as strong as with the 0.5 mg
I stopped after being at 4.5 mg for a while.

Still planning to try it again sometime.
 

hamsterman

Senior Member
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I take LDN 3.0 mg every other night (3 times a week). If I take it every night, it loses it's effectiveness. It helps with my fatigue but not with other symptoms.

Hmmm.. This is interesting to me. When you take it 3 times a week, are the positive effects consistent everyday? or are the benefits less on the days that you don't take it?
 

Hugo

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Did any of you start LDN while still taking sleep medicine? Is it advised not to take sleep medicine while on it?
It is? I didnt know that.. I dont take sleep meds now but I have earlier in the treatment. Aha sorry I saw it was a question.. read it to fast.
 

hamsterman

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ok, once again (for the 4rth time)... I notice the benefits are extraordinary for the first week, Moderate by the 2nd week... Now by the 3rd week... its a very mild... ( but sleeping benefits are constant.) Increasing the dose doesn't seem to help. I am considering doing another week off... and starting again.... or maybe doing 3 times a week. Im not sure really. Anyone have similar experiences, and or strategies?
 

Diwi9

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Have either of you had any positive effects from it? I don't think I could touch it again at any dose.
Sorry @bombsh3ll, I missed this post by you. Yes, it has helped us both. I got worse each time I titrated up, and it lasted about a week each time. I've been on LDN for a few months and my doctor now has me now taking 4.5mg at night and another 4.5mg in the morning (which is completely different from the normal protocol). It's interesting that this latest boost had no negative side effects, I was surprised because starting on the medication in the beginning was so difficult.
 

Aroa

Senior Member
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Thanks so much for sharing your experiences !!!!

Dr. Jarred Younger suggested that higher erythrocyte sedimentation rate (ESR) was related with higher response to LDN.

Could anyone comment on this ?
 

pattismith

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Thanks so much for sharing your experiences !!!!

Dr. Jarred Younger suggested that higher erythrocyte sedimentation rate (ESR) was related with higher response to LDN.

Could anyone comment on this ?
that's interesting!
 
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It took me ages to be convinced to try LDN. In June I finally agreed. Following my doctor’s directive, I started at 1.5 for two weeks, then increased to 3mg for a week, and then up to 4.5mg. I had not only horrific insomnia, but also terrible constipation with fecal impaction (absolutely not a normal pattern for me). A doctor at the Stanford ME/CFS Clinic is insisting I go back on it. I agreed to try - at .5mg. I did not appreciate, however, that he insisted it was impossible for LDN to cause constipation. Our understanding of the mechanisms of any drug much less the mysteries of the human body are always limited.