nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Is it normal to feel really tired when you first start LDN? I am only taking 1.5 mg instead of 3-4.5mg. I started it 4 days ago. At first it was hard to sleep so I thought that was it, but last night I slept ten hours and felt almost sleepy all day. Do endorphins make you feel tired?
I feel extremely unbothered most of the time. I think even on this very low dose I am making a lot more endorphins than I am used to. It is like being in LaLa Land - almost loopy.
-------------------- 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 |
posted
It took my body about a month to adjust, but it's helping me now.
Posts: 908 | From Albany | Registered: Nov 2008
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I started LDN about 2 weeks ago, give or take...started at 1mg and working up. I am having major fatigue problems and a general increase in symptoms.
several on my support group started LDN at the same time and most, not all, of us are having fatigue issues and skin breakouts..amongst some other neurological exacerbations.
If you research LDN, this is often the case in the beginning, for several reasons, the immune system is being turned on and is working hard (increased fatigue) and symptom exacerbation may be because the immune system is fighting infections and we are having flare/die-off.
there is a LDN yahoo group if you're interested.
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
posted
I think it's different for everyone but I did have an increase in symptoms in the beginning but by week 3 or so I was feeling a positive difference.
I started on 4.5 but took 1/2 a capsule the first couple nights only. My llmd wanted me to get up to 4.5 asap. I took melatonin the first couple nights as well to help with sleep.
You may just not be getting 'good' sleep because of the ldn, just hang in there and give it time, I do hope it works out for you as it has me and others!
Posts: 83 | From NC | Registered: Jun 2010
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks for the responses. I felt like I had been given a horse tranquilizer. Today was not as bad so maybe I am getting used to it, but I still have to double what I am taking to get up to the correct dose.
I am very excited about it working. I joined the yahoo group but have no luck getting responses to my questions. I did a lot of research but couldn't find any information about it causing tiredness at first so I am glad to know that is normal.
-------------------- 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 |
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I had horrible fatigue and bones ached. I was working full time and had to stop. I plan to try again as the benefits can be wonderful.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Been on LDN since March 2011. Def had fatigue early on but it did not last. Feel great on it now. I had sleep issues early on as well which made me extra tired too. Took maybe 6 weeks to normalize.
-------------------- Country Mouse
6/2011 IgX: IGG: 31 IND, 41+++, 45+, 58+ IGM: 31+, 39 IND, 41 IND, 83-93 IND Band 31 confirmed to be Lyme epitope by Igenex 7/2011
8/2011 IgX: POSITIVE IGG: 31+, 34 IND, 39 IND, 41++, 45+, 58+ IGM: 31+, 34 IND, 39 IND, 41++, 83-93+ Posts: 169 | From Western Mass | Registered: May 2011
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thank you for that link, feelfit. I was glad to see diabetes listed as one of the things LDN helps as I am trying to convince my adult son with LADA to try it. Dr. Bihari had 6 diabetic patients that went into remission - no further beta cell destruction.
I emailed Dr Z and he was kind enough to respond, saying essentially there have been no trials to prove it's effectiveness on diabetes but it doesn't hurt to give it a try.
I am going to order the medical text book about it for my son and maybe that will help.
ktk, I have read many MS patients quit using it because of pain.
What dose did you guys take?
-------------------- 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 |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I started at .50 mg for 3 days, 1 mg for 3 days, 2 mg/ 3days, 3mg/3days...3.50 about 5 days and holding at that for awhile.
my rx is for 4.5 mg.
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am still at 1.5 mg because I am having trouble falling asleep. I use a bit of seroquil to stay asleep. When I first started LDN I did not take the seroquil and was up for three hours in the middle of the night. Insomnia is something I have always struggled with.
Dr. Z has done research on LDN and says it is ok to take during the day. I will have to look that up.
-------------------- 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 |
posted
Nefferdun, I just started at 1.5mg a few weeks ago and upped it to 3mg last few nights. It has actually helped my fatigue, but as with feelfit, I'm having increased skin breakout.
Keep us posted, and I'll do same!
-------------------- 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
OK. I feel pretty good now. I notice I feel calmer and happier. I hope it helps to get me into remission. My fatigue is gone.
I need to locate a doctor in Seattle to RX it for my son.
-------------------- 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