posted
Usually I've read to take it at night...and if it gives you odd dreams, take in the AM or during the day. I posted this question elsewhere and got half take at night, half in the AM.
So I have no idea when to start taking this.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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posted
I just started taking this. I think I took it at night like 3 times. One of those times I had bad insomnia. Could have been a coincidence. Now I take it mid morning and I have had no issues. Amazingly it may be taking away my pain! I dont want to get my hopes up though.
Posts: 832 | From Somewhere | Registered: Nov 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
LDN must must must be taken at bedtime only. The whole benefit is to have your body produce some extra chemical (I forget what) while you sleep. This boosts your immune system.
It can give you some mild insomnia for a few days when starting. If that happens, lower the dose and ramp up.
I'm not a doctor. Please do your own research.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
I take mine at night but many have success with morning dosing if they are unable to adjust to the evening dose. Effects of LDN are very individual and there are no "musts" with any aspect of this therapy. Insomnia is common when starting and it will pass over a period of days to weeks. I needed to titrate up from 0.5mg to my current dose over a period of 18 months due to all the herxing as a result of the shift in immune function.
Posts: 184 | From CT | Registered: Aug 2006
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posted
Wow. I have heard that it works best at night due to a chemical but I've also read it's still OK to do when you wake up. My Ll says either way I have 2.5 mg capsules. I suppose I could try to do thirds of it. It was expensive so don't wanna order again just for a lower dose. .5 is quite low! I think If I do mine in thirds it'll be about .8. I really don't wanna go through more symptoms if possible. So are possible symptoms one may get from herxing? Due to immune sys attacking invaders? Some article, that I didnt read, said it 'blows up your symptoms'. Perhaps increase detox a bit while taking it?
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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posted
The herx is from a shift in immune function from th2 to th1 which enables you to mount a more efficient attack on Lyme and company. You can dilute your doses in water if you feel the need to titrate. I prepare my doses from the 50mg commercial tablets and take in liquid form. This enables quicker absorption and a more accurate dosing regime. It cost me about 10 bucks for a 5 year supply when done in this manner. There can be a significant amount of variability in compounded capsules. I found them to be too unreliable.
Posts: 184 | From CT | Registered: Aug 2006
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posted
Many years a GI doctor gave me 4.5 mg tablets to take for constipation. There was no improvement in the constipation or any lyme symptoms so I stopped.
This year my endo gave me LDN in the form of liquid that I took sublingual. I can control the dose easily.
Started at 2.5 mg at night since previously 4.5 mg didnt have any effect. After 3 or 4 days is when I had my insomnia. So I stoppped.
A week later I restarted at 2 mg during the day and noticed nothing. I probably only did this dose a few days because there was no effect.
Upped it to 2.5 mg mid morning. Fantastic for the pain. However after 3 days I had a total meltdown. All my neuro lyme issues exploded. I was so confused. Sound sensitivity through the roof. My whole body felt like it was vibrating.
Cognitive issues are still a problem for me but I haven't been that confused in a long time. The other stuff I haven't had for years. In fact I dont think I ever had the vibration thing.
So now 5 days after stopping, the sound sensitivity is gone. Vibration thing diminished and only seems to happen in the afternoon. However confusion, while not as bad, still remains.
If I could get back to where I was before the LDN I would start at a lower dose and try to titrate up slowly because it is the only thing that has touched my pain.
I worry though that since the confusion still remains, it may not be the drug for me. I know I have a hard time metabolizing codeine. But since Badtick said it may be a herx I dont know.
Posts: 832 | From Somewhere | Registered: Nov 2010
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posted
That's really interesting. I'd be intrigued as to the answer too. My guess is that it is attacking things and causing a reaction. I mean my logical mind says that as it makes sense. From what I've read, some have no effects at all at certain doses, good or bad, then trying a different dose, either lower OR higher, has a diff. effect. Even--someone may have a good result from 2.5 but not from 4.5.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
quote:Originally posted by Badtick: The herx is from a shift in immune function from th2 to th1 which enables you to mount a more efficient attack on Lyme and company. You can dilute your doses in water if you feel the need to titrate. I prepare my doses from the 50mg commercial tablets and take in liquid form. This enables quicker absorption and a more accurate dosing regime. It cost me about 10 bucks for a 5 year supply when done in this manner. There can be a significant amount of variability in compounded capsules. I found them to be too unreliable.
Has anyone else had the same herx like issues with LDN? I have been on it for 8 days now and I feel like I'm having a herx but it would make more sense that my immune system is trying hard to work again. Just trying to others experiences. I don't want to stop taking it because I feel like it's doing something...just not sure what!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Just FYI: This is an old thread but I was intrigued by Badtick's comments. I hope that they see they this and respond!
I didn't say what I'm experiencing, so I will say here: I'm having horrible hand pain, which was my first symptom of lyme years ago. My theory is that over the years as my immune system got worse, that pain subsided for the most part.
I am also having horrible leg symptoms. They feel like I have been walking at Disney World all day long if I just get up to go to the kitchen. My feet and ankles hurt too. I did just restart Rifampin also. I just don't know!!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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