posted
Has anybody tried low dose naltroxene? It is supposed to help pain and help modulate the immune system.
I would be interested in:
1. your experiences with LDN
2. your dosage
3. what time of day you take it
4. If you take it with food or on an empty stomach
Thank you so much!
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10205 | From Illinois | Registered: Aug 2004
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
LDN can be a game changer for some. Dr. P uses it with his patients. Not all respond, he reports. But the ones that do, it works really well.
I think I started at 0.5 mg, taken at supper time. I did not want to take it directly at bed time due to the possible two weeks of insomnia when first starting that some experience.
For me, it was not a game changer. I have Sjogren's symptoms, that involves a rash on my legs during flares or irritation (like swimming in my local YMCA pool). When I started LDN, the rash flared. And stayed that way until I stopped the LDN.
When speaking to a NP about my experience, he said I would be a candidate for the Ultra low LDN. I still may try it.
I say go for it! Praying you are one that responds really well to it.
(edited out dr name)
[ 06-03-2024, 02:19 PM: Message edited by: Robin123 ]
Posts: 1855 | From Maine | Registered: Jun 2004
| IP: Logged |
I started a 0.5 mg dose last night after dinner. Didn’t sleep at all.
Will move it to the morning now.
Am also back doing the earthing that AK described. Used to do it and stopped when I had the melanoma diagnosis. But I think it is very calming which is great overall for the body.
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10205 | From Illinois | Registered: Aug 2004
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Frustrating not to sleep at all! Yes, take it in the morning until you are past the initial two weeks. Supposedly after that, it helps sleep. I just never wanted to sacrifice two whole weeks!
Posts: 1855 | From Maine | Registered: Jun 2004
| IP: Logged |
I'm only taking 3 mg right now. I can give you the name of my pharmacy in Idaho.
Very good prices and you can choose just about any filler you want.
It has really helped me.
I take mine morning and evening.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Hey TuTu did your allergist prescribe LDN for you? Just wondering if it helps MCAS.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Yes! Lymetoo is correct in bringing up filler. Some people react poorly because of the filler. So if you know you have sensitivities make sure the filler is one you tolerate.
Lymetoo, I may try it again at some point. Would message me the Idaho pharmacy? Thanks in advance.
Posts: 1855 | From Maine | Registered: Jun 2004
| IP: Logged |
posted
I don't remember all the particulars you asked about, just wanted to tell you my adult son took LDN a few years back to help with pain - unfortunately it didn't do anything.
I pray it helps you. Posts: 9020 | From Illinois | Registered: May 2006
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I tried LDN once… don’t remember the dosage but it made me break out in a rash on my leg that went away when I stopped taking it. Never noticed any benefit from it either.
posted
I took LDN for long COVID causing high blood pressure. The LDN helped reduce the high blood pressure but sometimes I would get a headache. Initially it helped me sleep but then it didn’t. I was taking 1.5 mg. But then I stopped, I felt that I was getting depression on it.
Posts: 722 | From CA | Registered: Dec 2011
| IP: Logged |
posted
I tried it for a week and side effects for too much for me.
I really wanted it to work, but it made me feel toxic and raised my blood pressure.
Seems like everyone reacts differently to it.
I appreciate everyone’s input.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10205 | From Illinois | Registered: Aug 2004
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Hiker53, it can be so disappointing when people say it is a game changer. It doesn't work for me. Or let me rephrase that. I did not tolerate it at the dose I tried which is what you tried. It was suggested to me that I may be a candidate for the ultra low dose naltrexone. Since compounding is not cheap, I have not tried it at the lower dose yet.
Dr. Steven Phillips says that 45% of his patients do well with it. I did not fall into that percentage either. I am so sorry.
Posts: 1855 | From Maine | Registered: Jun 2004
| 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!
![[Smile]](smile.gif)
Printer-friendly view of this topic