LDN (low dose Naltrexone)

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johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/3/2013 11:26 PM (GMT -7)   
Hello everyone. I've read posts in the past but posting for the first time.
The only reason that I registered is because I suffered from ME/CFS for 8 years now
and the ONLY thing to help me in any way is LDN. Some of you may have heard of LDN
and maybe even use it. For those who haven't, research it and see what you think.
It's cheap, not many side effects and it works for many autoimmune diseases.
I know its my first post, I'm not trying to sell anything or troll, I've just been really
desperate and praying for some relief. This is no miracle drug, but it has helped a little.
For those of you in bed all day, I'm sure a little is a LOT. I'd be more than happy to share
my experience if you have any questions.

-Johnny

PS: didn't see any threads about this, sorry if its already been posted.

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 9/7/2013 4:41 PM (GMT -7)   
Johnny, welcome to the forum, it is very nice to meet you. I have had CFS for almost 10 years now, my how time flies, seems like only last year that I was still working. I have never tried LDN but I did just read up on it & it sounds promising for MS & Fibro. If you are feeling better then it may have a benefit for CFS. When reading about its affect on FM it said it helped with mental clarity & fatigue so I can see why you are having an improvement. How long have you been taking it? You are right a little can be a lot for us. I think a little here & a little there & I will be doing good. lol Once again, welcome. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/7/2013 5:25 PM (GMT -7)   
Hello Jewelrylady,

I have been on it for 4 months now. Its cleared up the brain fog a good 20%. My "crashes" are shortened and I have a little bit less fatigue. I also sleep better. Although at first the medicine disturbed my sleep a lot. (for about a week). If your Doctor doesn't think LDN is helpful, FIND ANOTHER DOC. Also, make sure you take it to a compounding pharmacy. I honestly think EVERYONE with ME/CFS should at least try it for 30-45 days. By far the best treatment i've had and i've tried EVERYTHING. Like many on here have. Hopefully this helps someone as much as its helped me. I first joined this forum in 2005. (different username) and back then there wasn't much help. I came on here to see if anyone had any ideas that could help me. Hopefully this will help someone.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 9/8/2013 3:13 AM (GMT -7)   
Thank you so much for sharing this information!  My doctor has actually mentioned this to me as something to try, but wants to have me on only so many things at once.  When do you take it?  Dosage?  Even 20% is something, all of us would take that.  From what you mentioned, the body must adapt to it if you had only a week of adjustment.  The sleep thing is important, obviously we need all the quality sleep we can get.  Curious to hear if you took anything with this to counter the sleep effects, like melatonin or something.  Brain fog has been a huge factor in my CFS, so anything to clear this up a bit would be great.  As I stated in an earlier post, saline has been one item for me that has made a difference so far. 

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 9/8/2013 3:10 PM (GMT -7)   
Johnny were you on any pain meds when you started the LDN?

We're you in pain?

Naltrexone I thought really treats endorphins deficiency?

Is that part of what is causing CFS?
ME ? Is that caused by clogged blood vessels or thick blood or something else.

I have heard good things about LDN.

How low is your dose?

Bucci
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 9/8/2013 3:54 PM (GMT -7)   
Yes, I'll try anything that doesn't involve needles or fangs once! I have heard of this but I guess I need to do some research, Thanks
Craniotomy/Meningioma 12/02,Bi-P. 04,SMI 06, Glu./Wh./La. Int.,IBS 06, Mig. w/ps.-seiz. 07,Dev.Sep.Sur. 9/07, 2nd Men./Tu. Gam. Kn. Rad.12/08, Rad. Hyst. 09/09, w/Meno, Fibro. 09, Disab. 09, EBV/CFS? 11, Vom., D + C w/Vertigo 12, C-diff, spas. col., Chr. Fat. Mod. 13, Lots of Meds they ch. often + herbal meds + alternative when I can afford it.

johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/9/2013 11:38 PM (GMT -7)   
Minnesota said...
Thank you so much for sharing this information! My doctor has actually mentioned this to me as something to try, but wants to have me on only so many things at once. When do you take it? Dosage? Even 20% is something, all of us would take that. From what you mentioned, the body must adapt to it if you had only a week of adjustment. The sleep thing is important, obviously we need all the quality sleep we can get. Curious to hear if you took anything with this to counter the sleep effects, like melatonin or something. Brain fog has been a huge factor in my CFS, so anything to clear this up a bit would be great. As I stated in an earlier post, saline has been one item for me that has made a difference so far.


Hello Minnesota,

Talk to your doctor, but I think its pretty safe to take with other drugs. I know there are a few that you shouldn't mix, so talk to him/her first. You are supposed to take it between 9pm-2pm. Some people don't have ANY insomnia from LDN, but a few do..I was one of them. I did take melatonin to counter it. It helped a bit. LDN takes about a month to really settle in..So if you take it, try and take it for a least a month. (again, talk to your Doc, im definitely not a Doctor) Remember, a compounding pharmacy is REALLY important.

Saline is through IV right? Is it pricey?

If you ever try LDN, let me know how it goes for you !

Post Edited (johnnyboy07) : 9/10/2013 12:43:46 AM (GMT-6)


johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/9/2013 11:41 PM (GMT -7)   
bucci said...
Johnny were you on any pain meds when you started the LDN?

We're you in pain?

Naltrexone I thought really treats endorphins deficiency?

Is that part of what is causing CFS?
ME ? Is that caused by clogged blood vessels or thick blood or something else.

I have heard good things about LDN.

How low is your dose?

Bucci


Hello Bucci,

Naltrexone at high doses is used for pain and people coming off hard drugs. Over the last few years they have found that given at a low dose it can help regulate the immune system. 4.5mg or less to be exact. People taking it for Heroin take hundreds of MG's. I did not have low endorphins before. I believe that I got ME/CFS after a very serious virus when I was younger. Not sure if the Virus caused it, or just opened the door.

Do some research on LDN, if you take it, let me know how you do !

Post Edited (johnnyboy07) : 9/10/2013 12:44:50 AM (GMT-6)


johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/9/2013 11:43 PM (GMT -7)   
Recoveryme2day said...
Yes, I'll try anything that doesn't involve needles or fangs once! I have heard of this but I guess I need to do some research, Thanks


Hello Recoveryme2day,

Please read up on it and try it if you like what you read. I don't know if it will help everyone, but all I know is it has helped me a bit and I was excited to come back to this site to share the news. I used to post here in 2005 and I read some old posts...This journey has been a long and tough one, so I'm pumped to be able to actually share something positive.

If try it please let me know how it goes for you.

irishuld
New Member


Date Joined Oct 2013
Total Posts : 18
   Posted 10/19/2013 8:27 AM (GMT -7)   
I have been on ldn for two years and it saved my life. I was mostly bedbound/housebound and if I did go out I did not enjoy it everything was just a fog. After ldn I could start mild yoga class, I could go out and meet friends and enjoy it. I am still very sick and spend alot of my time in bed but I can excercise and go for a little walk and meet my friends and I am not a ghost anymore.
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