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Yeah, I took Roaccutane too... 20 years ago, mind. I can't say the drying out effects of LDN were anything like that severe, and I only recall it affecting my nasal airway and respiratory system, not skin or hair.
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Day Seven on LDN
- Thread starter belize44
- Start date
Yeah, I took Roaccutane too... 20 years ago, mind. I can't say the drying out effects of LDN were anything like that severe, and I only recall it affecting my nasal airway and respiratory system, not skin or hair.
According to this document (pdf):
Dry mouth, eyes, skin, and hair can be caused by an iodine deficiency. I used to have such dry skin that my knuckles and finger joints would often crack and bleed. Now that I take high dose iodine my skin is baby soft.
Dry mouth, eyes, skin, and hair can be caused by an iodine deficiency. I used to have such dry skin that my knuckles and finger joints would often crack and bleed. Now that I take high dose iodine my skin is baby soft.
here's an update on my experience with LDN:
although i started with LDN from buyldn.com, i am now using LDN that i dilute from 50 mg Revia tablets (the India Sun Pharma brand) that i get from my HMO.
having finished the 10 days at 1.5 mg, i am now on day 11 of 3.0 mg taken after 9pm and i will be staying at this dose as i am seeing effects. these are the positive changes:
1. better mood - especially in the first half of the day
2. better ability to deal with negative thoughts
3. more regular bowel movements: i am having a daily movement, whereas, before LDN, i only had BM every 2-4 days - plus, the IBS seems reduced (less mucus in stools, less colon pain).
4. less likely to get PEM
5. have not had a bad flare up of neuropathy since starting
caveat: it has only been a couple of weeks, but this is promising.
regarding negative (adverse) effects:
1. the headache and nausea that i had with each dose increase no longer occur
2. i occasionally feel a small lack of motivation to do things - possibly due to the elevation in endorphin affecting the part of my makeup that pushes me to do things (super-ego, whatever you want to call it) - and this may not really be a bad thing.
although i started with LDN from buyldn.com, i am now using LDN that i dilute from 50 mg Revia tablets (the India Sun Pharma brand) that i get from my HMO.
having finished the 10 days at 1.5 mg, i am now on day 11 of 3.0 mg taken after 9pm and i will be staying at this dose as i am seeing effects. these are the positive changes:
1. better mood - especially in the first half of the day
2. better ability to deal with negative thoughts
3. more regular bowel movements: i am having a daily movement, whereas, before LDN, i only had BM every 2-4 days - plus, the IBS seems reduced (less mucus in stools, less colon pain).
4. less likely to get PEM
5. have not had a bad flare up of neuropathy since starting
caveat: it has only been a couple of weeks, but this is promising.
regarding negative (adverse) effects:
1. the headache and nausea that i had with each dose increase no longer occur
2. i occasionally feel a small lack of motivation to do things - possibly due to the elevation in endorphin affecting the part of my makeup that pushes me to do things (super-ego, whatever you want to call it) - and this may not really be a bad thing.
Just read about the drugs to avoid. I usually have 2 glasses of red wine in the evening. Anybody here had a problem with alcohol and LDN?
The faq on lowdosenaltrexone.org has this to say about LDN and alcohol:
And from the FAQ at ldnscience.org:
These are the 'official' answers but people with CFS/ME sometimes have paradoxical reactions, so your personal experience may be different.
And from the FAQ at ldnscience.org:
These are the 'official' answers but people with CFS/ME sometimes have paradoxical reactions, so your personal experience may be different.
TrixieStix
Senior Member
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- 539
I had a severe reaction to Ultra Low Dose Naltrexone 12 hours after my very first dose. I was awaken by very painful sharp waves of what felt like electrical current shooting down my back starting at base of my neck travelling into my upper back and into my upper arms and at times my upper thighs. It was a very painful and scary experience. It went on intensely for over 3o minutes, and next day I would get zapped every once in a while. My doctor told me to stop taking it immediately. I really wish I knew why it had this effect on me. The only thing I can come up with is that for some reason it induced "Lhermitte's Sign" in me.
Was a bummer too because the prescription cost me $125
*GG*
senior member
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- Concord, NH
This little study from 2014 was just published.
GG
Edited to proper PDF.
GG
Edited to proper PDF.
Last edited:
Whew! Thanks for the info. Actually, I had the usual couple of glasses last evening, stopping at least 2 hours before my (first) dose of LDN (super low ca. 0.2mg). Don't think the wine caused any problems.
hi, an update regarding my experience with LDN at close to two months:
i am still at 3.0 mg each night: i take 3 ml of a 50 mg Revia pill diluted in 50 ml of water.
i am finding that the sense of well-being that i wake up with fluctuates a bit but has generally grown stronger in the last couple of weeks. i would take it just for this. it helps me with food cravings, drug cravings, and generally increases my resistance to negative thought patterns. i attribute this to the increase in endorphins.
i have also been able to reduce my benzo use. i am one of the folks who do experience a large reduction in symptoms from clonazepam and have worried about developing an addiction to it (tho i've never taken more than .25 mg in 24 hrs).
it seems to have made my bowel movements more regular. i really like this effect too. i also am less prone to PEM, and neuropathy and my other symptoms of CFS worry me less.
it is interesting how people vary in their response to LDN. i hope that some day there will be studies of responders and non-responders that will help us understand this issue.
i think LDN is very much worth trying - but it is a complicated drug as you need to give it time to work and you need to play with the dose and (possibly) timing - not to mention the problems with sourcing this medication.
that's it for now.
i am still at 3.0 mg each night: i take 3 ml of a 50 mg Revia pill diluted in 50 ml of water.
i am finding that the sense of well-being that i wake up with fluctuates a bit but has generally grown stronger in the last couple of weeks. i would take it just for this. it helps me with food cravings, drug cravings, and generally increases my resistance to negative thought patterns. i attribute this to the increase in endorphins.
i have also been able to reduce my benzo use. i am one of the folks who do experience a large reduction in symptoms from clonazepam and have worried about developing an addiction to it (tho i've never taken more than .25 mg in 24 hrs).
it seems to have made my bowel movements more regular. i really like this effect too. i also am less prone to PEM, and neuropathy and my other symptoms of CFS worry me less.
it is interesting how people vary in their response to LDN. i hope that some day there will be studies of responders and non-responders that will help us understand this issue.
i think LDN is very much worth trying - but it is a complicated drug as you need to give it time to work and you need to play with the dose and (possibly) timing - not to mention the problems with sourcing this medication.
that's it for now.
Hi, my 18-year-old son (who has had ME/CFS for 18 months now) is about to try LDN. The doctor has suggested he take 4.5mg. Is there any clinical/research/'official' recommendations for starting dosage for LDN for ME/CFS patients? Also, I have read that just before bed is the best time to take it, does that sound right/best? Many thanks for any advice.
that's really bare-bones advice from the doc. most protocols for LDN start at 1.5 mg and increase in 1.5 mg increments up to 4.5 mg. myself, i have stopped at 3.0 mg as that is the point where i see benefit. it's ok to play with the dose, going up and down in 1.5 mg increments. usually you would stay at any given dose for 7-10 days to give the body time to adjust to it. i encourage you to read some of the LDN FAQs out there on the web. and, yes, night time is optimal for producing the biggest effect - if it doesn't interfere with sleep.
here are a couple links:
https://www.ldnresearchtrust.org/what-is-ldn
http://www.lowdosenaltrexone.org/gazorpa/LDNFAQ.html
The dose that a CFS/ME patient can tolerate varies significantly. Some people can only tolerate ultra lose dose naltrexone (ULDN) while others can manage 4.5mg immediately. I started at 0.125mg and noticed an effect within a day. Then I gradually increased by 0.125mg until I experienced anxiety at 4mg. Eventually I found that 2.5mg/day works best for me.
4.5mg/day is often quoted as the ideal dose, but it's too much for some, and not enough for others. People with CFS/ME need to start very low, increment slowly, and experiment to find the ideal dose that helps but doesn't lead to an extended period of feeling miserable (one recommendation I've read says that if a person feels terrible after two weeks at the same dose then they should try a lower dose for another two weeks.)
I've experimented with the time I take LDN. I used to have an alarm set to wake me at midnight to take the LDN but now, since I wake several times each night, I just take it whenever I happen to wake up after midnight.
When I first started taking the LDN, and sometimes when I changed the dose, my sleep would be disturbed for a few nights. Once I found the 2.5/mg ideal dose for me then my sleep became more regular.
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it is interesting how people vary in their response to LDN. i hope that some day there will be studies of responders and non-responders that will help us understand this issue.
i think LDN is very much worth trying - but it is a complicated drug as you need to give it time to work and you need to play with the dose and (possibly) timing - not to mention the problems with sourcing this medication.
Hi, I am almost a week into my trial of low dose naltrexone for fibromyalgia pain and cfs
So far I have noticed that my insomnia has improved as I am now getting a good 5 to 6 hours sleep a night, assisted by Temazepam, and 1 hour per afternoon, non assisted.
When I was first diagnosed in 2001,I sometimes slept 20 hrs a day, totally unassisted. Then over the years I gradually became an insomniac (cause unknown)
I took absurdly huge doses of Tramadol for fibromyalgia pain from 2005 to just last week. It worked for pain, but caused it's own problems,like constipation and irritable bowel syndrome.
I am hoping low dose naltrexone will solve my pain issues with out the awful side effects.
So far it seems to be working out with just 3.0mg/day.
What I am really concerned about is the possibility that I may never enjoy a glass of wine again,after almost 40 years involvement professionally as a winemaker.
Can anyone tell me if my concerns are real or groundless?
Andrew.
i think LDN is very much worth trying - but it is a complicated drug as you need to give it time to work and you need to play with the dose and (possibly) timing - not to mention the problems with sourcing this medication.
Hi, I am almost a week into my trial of low dose naltrexone for fibromyalgia pain and cfs
So far I have noticed that my insomnia has improved as I am now getting a good 5 to 6 hours sleep a night, assisted by Temazepam, and 1 hour per afternoon, non assisted.
When I was first diagnosed in 2001,I sometimes slept 20 hrs a day, totally unassisted. Then over the years I gradually became an insomniac (cause unknown)
I took absurdly huge doses of Tramadol for fibromyalgia pain from 2005 to just last week. It worked for pain, but caused it's own problems,like constipation and irritable bowel syndrome.
I am hoping low dose naltrexone will solve my pain issues with out the awful side effects.
So far it seems to be working out with just 3.0mg/day.
What I am really concerned about is the possibility that I may never enjoy a glass of wine again,after almost 40 years involvement professionally as a winemaker.
Can anyone tell me if my concerns are real or groundless?
Andrew.
@Friendlyfisho
If you are concerned about LDN interacting with alcohol, my previous post contains references from two LDN FAQs that indicate LDN isn't known to interact with alcohol.
- Messages
- 10
Thanks for that PatJ,
Phew, that's a relief - the best news I've had this week actually.
They say that what doesn't kill you, only makes you stronger.
I'm not so sure about that. A weeks self imposed abstinence was hard yakka (work) and I don't feel any stronger for it.
Seriously, thanks PatJ, I have trawled through various sites and not found the references you did. There is just so much information out there, anecdotal and otherwise, that it is really difficult to find and adsorb it all oneself.
Phew, that's a relief - the best news I've had this week actually.
They say that what doesn't kill you, only makes you stronger.
I'm not so sure about that. A weeks self imposed abstinence was hard yakka (work) and I don't feel any stronger for it.
Seriously, thanks PatJ, I have trawled through various sites and not found the references you did. There is just so much information out there, anecdotal and otherwise, that it is really difficult to find and adsorb it all oneself.
Wondering if anyone has updates on their experience/advice/observations with LDN?
My teen son has been on it two weeks now - 4.5mg at bedtime.
Not seeing any major negative side effects so far (he is reporting minor headaches and nausea....both of which might or might not be the LDN?).
But not seeing any benefits either. I was hoping LDN might help with his two key ME/CFS symptoms - debilitating brain fog and fatigue.
Presume we just keep on with the dosage and wait at least a month-plus to see if any benefits?
My teen son has been on it two weeks now - 4.5mg at bedtime.
Not seeing any major negative side effects so far (he is reporting minor headaches and nausea....both of which might or might not be the LDN?).
But not seeing any benefits either. I was hoping LDN might help with his two key ME/CFS symptoms - debilitating brain fog and fatigue.
Presume we just keep on with the dosage and wait at least a month-plus to see if any benefits?
The headaches and nausea might be from the LDN as his immune system adjusts. If I was in his position I would give it a month, or better, two months. The body takes time to adjust. If he decides to stop taking it then he should also watch for the recurrence of subtle symptoms that LDN may have helped with but that he didn't notice had disappeared.
4.5 mg isn't an ideal dose for everyone. I can't tolerate more than 2.5 mg, some can't tolerate more than 0.1 mg, while others go up to 9 mg. It takes some experimentation to find the dose that does the most good for a long period of time.
Your son may also unintentionally be doing (or experiencing) things that interfere with the effectiveness of the LDN. ie. Dairy and gluten can both interfere. This site lists many things that can undermine the effectiveness of LDN.
Thank you Pat. I have read the site, very interesting. My son is largely sugar, dairy and gluten free....but not 100%. So we'll look at this carefully in the next few days and beyond. Fingers crossed going forwards. xx
Stretched
Senior Member
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I hope you will post more with time, positive or negative.... . I recently took LDN and nada - if anything, maybe sleep a little better. No nausea nor other
affects. I stopped after 4 weeks for concern it might interfere with Amisulpride, which does give me positive results.
I hope you will post more with time, positive or negative.... . I recently took LDN and nada - if anything, maybe sleep a little better. No nausea nor other
affects. I stopped after 4 weeks for concern it might interfere with Amisulpride, which does give me positive results.
I had not heard about Amisulpride previously.
@Stretched do you take a low dose of Amisulpride? If so what dose? Any issues with EPS (Extrapyramidal side effects)? Wiki says around 10% get some EPS but I assume that's with the usual dose.