The hubby is trying low dose naltrexone (4.5 mg). He was so exhausted the first 3 days he had to stop taking it. These seems to be the antithesis of what most people experience.
Anyone else had this happen on LDN? If you did -- did you get past it, or give up the LDN?
Posted by ninjaphire (Member # 18234) on :
I did try Low Dose Naltrexone for a few weeks.
Started at 0.5 mg and increased by 0.5mg every week or two weeks or so.
You really need to get adjusted to each dosage before increasing the dose.
It working reasonably well, I think, but I stopped it at 2.5mg or so for other reasons.
I believe that fatigue is a low grade herx.
Posted by viva (Member # 8183) on :
Minoucat,
My husband has been taking LDN for a while; I believe he's also at 4.5 mg.
In the beginning, he had some transient insomnia, which he was able to push through. Now, strangely, he gets severe insomnia if he DOESN'T take it. I can tell you that he sleeps very soundly at night, and is hard to rouse in the morning. I'm not sure if this is related to the naltrexone, but my gut says it is.
His LLMD says he will be on it for a while. It's hard to know what effect it's having, but we trust LLMD's judgment, so he'll continue.
Not sure this is relevant to your situation, but wanted to share his experience. If there's a way for your husband to stay on (either gradually increasing dose, like ninjaphire suggests, pushing through, or possibly adjusting when he takes it), it's probably worth a try. There was a recent thread on how the traditional timing of taking LDN at bedtime isn't the only option--perhaps, under your LLMD's guidance, you could experiment with a different time so the fatigue hits differently?
Best to you both, Viva
Posted by n.northernlights (Member # 17934) on :
I got much more energy, and I started real slow. On the LDN forums they always advice to start slow, unless it is cancer; then they ramp it up a bit faster. It looks like the MS patients need the slowest approach.
You can always ramp down, or try another dose. A few patients do need some different doses than the standard 4,5mg. You can try the LDN yahoo groups or forums if you want to.
Posted by Sammi (Member # 110) on :
minoucat, did your husband start at 4.5 mg?
I take LDN and feel it is helping. I started at 2.5 for some time and then increased to 4.5.
I did have some sleeping problems but they went away in a couple of weeks.
Posted by lymeHerx001 (Member # 6215) on :
I stopped taking my LDN it was giving me much anxiety!
Posted by minoucat (Member # 5175) on :
Thanks, everyone, for your responses.
Yes, he started at 4.5 mg. The fatigue was so bad that he stopped after 4 days. Then he waited a few days and started again. The fatigue hit again for the first few days, but it seems to be lifting now (around day 6) and he's had 2 good days and a big improvement in mood. He's going to keep at it for a while longer and see if the upturn continues.
He had only the severe fatigue as a symptom -- no insomnia or anxiety effects so far, and no increase in physical symptoms like pain.
I'll keep you posted.
Posted by Lymeorsomething (Member # 16359) on :
Thanks for the info Mino. I have a 3 month supply of LDN (4.5 mg) but have not started yet. The last thing that I need is MORE fatigue. Maybe I'll give it a shot though...
Posted by TerryK (Member # 8552) on :
I've read that symptoms can increase for up to 3 months - fatigue being one of them.
I've been on for 2 months and I'm just now starting to think it may be helping.
Check out this thread Why U may get increased symptoms in 1st 3mo on LDN � Thread Started on Dec 29, 2004, 10:42am �
-------------------------------------------------------------------------------- For those of you in the first 3 months of LDN therapy Dr. Bob Lawrence from the UK who has MS & uses LDN himself explains why the temporary increase in MS symptoms.
Posted by Skyler (Member # 11549) on :
That was why I had to stop taking the low dose naltrexone. It made me exhausted and woozie all the time.
Posted by Keebler (Member # 12673) on :
- I have a friend who just started this so I was curious.
There are 44 past threads here at LymeNet on LND and a million more on the web.
About 1/2 way down the link below, it is explained that adverse effects happen more for those who consume gluten. One doctor advises being gluten-free and casein-free before starting this -
LDN Forum -
Posted by nspiker (Member # 22824) on :
Can anyone explain why gluten affects LDN?
I took my first dose (2mg.) yesterday (in the morning to try and counter the side effects of insomnia). The result was I felt terrible; spacey, sleepy, nauseous, chest pressure, and a tight throat.
Can anyone confirm the half-life of LDN is 4 hours? I felt better after about 9 hrs. Does it build up in the body?
Posted by Keebler (Member # 12673) on :
- Q: How does gluten affect LDN?
See the section with McCandles- it is explained there: