Topic: Extreme fatigue with low dose naltrexone -- anyone else?
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
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?
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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
Posts: 532 | From southeast US | Registered: Oct 2005
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posted
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.
Posts: 366 | From Europe | Registered: Nov 2008
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
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.
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lymeHerx001
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posted
I stopped taking my LDN it was giving me much anxiety!
Posts: 2905 | From New England | Registered: Sep 2004
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
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.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
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...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
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.
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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 -
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?
Posts: 964 | From san diego | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: How does gluten affect LDN?
See the section with McCandles- it is explained there:
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
It's supposed to normalize the immune system a bit, Tracy.
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