I started LDN 10 days ago at 1 mg. in the hopes that it would boost my immune system. Since then I have been feeling steadily worse, with increasing muscle stiffness, especially in the neck, worsening brain fog and, worst of all, horrible depression.
The depression had been kept at bay with zoloft, but it seems like the LDN negates it.
To anyone who has tried it, is this normal for people who have lyme and co? If so, does it improve?
Posted by poppy (Member # 5355) on :
Are you sure it is the LDN? Where are you in the flare/herx cycle?
I am also on a low dose and it does not do this to me. Of course, everyone is different.
Posted by SoOverIt (Member # 31168) on :
LDN can make you herx and make some symptoms worse. Many have to start out at .05MG and slowily work up from there.
I have been on it since August 11, and it has beem a MIRACLE for me. I am up to 3.5MG and that seems to be the "happy spot" for me!
Posted by whitmore (Member # 28721) on :
Thanks for the replies. I don't really have a herx cycle. Sadly, I feel pretty lousy all the time, but worse since the LDN, so pretty sure that's the cause. I'll hang in if this is a herx and maybe try to split the capsules. BTW, has anyone tried mixing their own from regular strength naltrexone per internet instructions? It's appealing since the dose can then be infinitely adjusted. Sue
Posted by poppy (Member # 5355) on :
If you have capsules, you can put the contents in an amount of water, then use whatever dose you calculate. I am actually doing that with the 3 mg capsule. Putting the remainder in fridge in a little jar with a lid, taking it the next day. Doing it on my own. You might want to ask your pharmacist if there is any reason not to.
Posted by Dekrator48 (Member # 18239) on :
I have been on LDN for 2 months.
On day 13 my pain and stiffness got worse, especially in my neck and shoulders...but basically all over.
On that day I could not even lift my right arm.
The pain has improved from that awful day, but it is not better than it was before.
I also had some nights in the beginning where I slept more hours than usual.
I started on 1.5 mg for 1 week, then increased to 3 mg for 1 week and then increased to 4.5 mg, where I remain.
My LDN is in the form of sublingual drops.
Posted by nefferdun (Member # 20157) on :
It is fine to dilute it - distilled water is preferred and it must be refrigerated afterwards. If you put your 1mg capsule in a small bottle and add 4 droppers of water (shake), then each dropper will only be 0.25 mg.
I could not take LDN because I think I was just detoxing too much. It also seems to bring all the infections out of the wood work so expect a lot of herxing. I plan to start back as soon as I finish some major detoxing (get my methylation cycles going again). It is a good idea to start with a very low dose and work up slowly.
LDN creates endorphins and is used to treat depression so you should feel better after awhile. I felt very happy and calm on it.
Posted by whitmore (Member # 28721) on :
Thanks again. Dekrator48--are you getting any benefit from it in terms of mood? I can't imagine staying on it for 2 months if all I got from it was more stiffness/pain. Sue
Posted by SoOverIt (Member # 31168) on :
Dek, I am wondering if you ramped up too soon as well as on too high of a dose right now????
Posted by SoOverIt (Member # 31168) on :
The other "benefit" I got from the LDN is I was able to quit smoking! Yes, I am now 7 weeks cold turkey! I was 2 packs per day for 27 years (well not all 27 yrs at 2 packs).
I did not know that LDN could assist in this, until after I quit and I was marvelling over it and someone pointed me to an article where it said LDN is helping some quit smoking..Something to do with endorphines!
Posted by Dekrator48 (Member # 18239) on :
I just followed what my LLMD said to do about the dosing.
I was not depressed, so I cannot say that I noticed any difference in my mood.
The increased pain and stiffness went back down to what is was to start with, so it did not stay at an increased level for 2 months.
I see my LLMD on March 6, so I'll see if I should continue it or not.
He initially wanted me to try it for 2 months.
Posted by nefferdun (Member # 20157) on :
It is now recommended not to go over 3 mg. 4.5 used to be recommended for cancer but now Dr. Zagon has said 3 is the optimum dose for everyone. It will increase pain in the beginning with some conditions. There is a LDN yahoo group that answers a lot of questions.
Dekrator,, that is great it helped you quit smoking. I have tried to get my daughter's boyfriend to try it for his back pain but he can't stop the pain meds.
Maybe it would be a double benefit and help him quit smoking too. He does not realize there are over 200 toxins, heavy metals and carcinogens in tobacco, all of which cause more inflammation making his back pain worse.
Posted by jlcd1 (Member # 18138) on :
I've been on it for about 6 months. I love it. I got worse for about a month, and then started to have more energy.
I think this has helped me a lot.
Posted by Dekrator48 (Member # 18239) on :
Hi neff,
I have never smoked....that was SoOverIt who quit smoking....lol.
Can you direct me to a link of Dr Zagon's where he says that 3 mg is optimal?
I've been looking at his info and LDN site and I keep seeing 4.5 mg as the standard dose, although it says it can really vary from 1.5 mg to 10 mg.
The link below says that MS patients who have muscle spasms should only take 3 mg....