> Side effects: LDN has virtually no side effects. Occasionally, during the first week's use of LDN, patients may complain of some difficulty sleeping. This rarely persists after the first week. Should it do so, dosage can be reduced from 4.5mg to 3mg nightly.
I hope your insomnia improves soon.
Posts: 4682 | Registered: Oct 2000
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hopefully the insomnia will go away soon.
Posts: 4682 | Registered: Oct 2000
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
You can reduce your dose to help. I started with 1.5 mg and then doubled to 3 mg. If your dose is already high, you can mix it in distilled water, figuring out how to get the dose you want. For instance if you put two 3 mg capsules into 6 ml of water and then took 1 ml, you would be getting .5 mg. You need to keep it refrigerated.
According to Dr. Zagon's research it does not really matter when you take it, so you can take it in the morning to avoid the insomnia. Then if you wanted, when you got used to it, take it at bed time.
I take mine when I get up to go to the bathroom in the middle of the night and it does not bother me.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I started at 1.5 mg., and had trouble sleeping for several nights. Then each time I increased the dose it happened again. Seems to be pretty much back to normal now.
It's best to take it at night. I never heard anything about refrigeration. There is an active Yahoo group that can answer most questions about LDN.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
You just need to refrigerate if you dilute it with distilled water so you can take a smaller amount.
But if the insomnia is really bad you can take it in the morning - according to Dr. Zagon, who helped conduct the LDN trials at Penn State for Crohn's disease. He says it is nonsense that it has to be taken before bed.
I asked this very question on the yahoo group a week ago when I was having so much trouble and these were the suggestions I got.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I wanted to bump up this thread.
Can those that are taking LDN talk about how it has worked for you? I have read that it can be a killer at first for those with lyme. Has anyone lived through the bad time to get to the miracle other side?
Please share your experiences.
(ps. I know this may be here somewhere...but this thread comes up in a search on LDN so thought it would be a good place to share)
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
What does LDN do?
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
| IP: Logged |
posted
I've been taking LDN since late August, about 9-10 weeks. I took 1.5mg/night for the first month, and upped it to 3mg/night for the last 4-5 weeks.
I had insomnia and nausea for the first few nights when I started and again when I increased the dose.
The most noticeable effect for me was an increase in symptoms of yeast, despite the fact that I had been taking multiple herbal and pharmaceutical anti-fungals for a long time when I started LDN. I've since added in a few more anti-yeast measures, and now the only evidence I have of yeast is a whitish tongue every morning.
For the first two weeks on LDN, my mood was elevated (and life was grand!). Unfortunately, that wore off...
So, it's difficult to tell, yet, if LDN has helped me. I also added Iodoral just after I started LDN to combat yeast, and so I am having what may be explained as bromide detox symptoms. But the symptoms I'm experiencing are difficult to distinguish from my Lyme symptoms (mild twitching, mild malaise, hands falling asleep at night), and so who knows what's happening?
I definitely haven't had an exacerbation of symptoms, though, fortunately, as I've heard some Lyme patients describe.
Good luck with LDN, and keep this thread updated!
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I had to stop it hopefully temporarily. I don't know what was going on with me and can't say for sure it was the LDN but I had the urge to urinate so frequently I was getting up several times a night. I wonder if it was stirring up the bart.
I had trouble sleeping so I took it in the morning. The endorphins were wonderful. I felt so happy. I have never been so outgoing! I think it is an incredible drug .
After awhile I began to sleep extremely well and even though I have not been on it for a couple of weeks, my ability to fall asleep and stay asleep is still with me. I am so grateful for that.
I wonder if other people may have experienced the same thing I did of stirring the infections up - bringing them out. I was very confused as I did not know (and still don't) what was causing what.
I had not felt dizzy for months and was suddenly dizzy. I had not had muscle twitching in over a year or pain in my knee and it was back, not all the time - just now and then. I had terrible headaches and my shoulders and one arm ached.
Then I quit it and felt fine. So strange. I am not sure what to make of it but I think it may drive the infections out. The immune system "sees it" and everything goes nuts.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic