LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » low dose naltrexone

 - UBBFriend: Email this page to someone!    
Author Topic: low dose naltrexone
katrinab
LymeNet Contributor
Member # 30330

Icon 1 posted      Profile for katrinab     Send New Private Message       Edit/Delete Post   Reply With Quote 
Reading about low dose naltrexone helping people with severe pain and I have severe muscle pain. Has anyone found that it helps as much as an opiate like oxycobtin? First of all, I have to stop taking my oxys to take the drug for it to even work so in wondering if it will be worth it. Also what dose do I take and how do I dilute it? Someone said I could get it from riverpharmacy without a prescription. Is this true?
Posts: 723 | From boston,ma | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
Member # 40917

Icon 1 posted      Profile for GretaM     Send New Private Message       Edit/Delete Post   Reply With Quote 
LDN-love it love it love it

It is one prescription I will happily look forward to taking for the rest of my life.

Yes helps me with muscle pain. Nothing worked before. Ever. Not even hydromorphone or morphine. Doesn't get rid of 100% of the muscle pain, but what I would describe as my, "fibro", (another misdiagnosis), muscle pain, yes it does.


Also helps me with autoimmune issues-rashes

Did not get a cold or flu this entire winter

Have not had any allergies since taking it

I truly truly love it and can't say enough good things about it.

I take 3mg at bedtime.

It took me about 2 weeks to adjust to the odd dreams from it. Then the odd dreams stopped.

It has to be regular release. There's a good site, lowdosenaltrexone.org with more info.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
droid1226
Frequent Contributor (1K+ posts)
Member # 34930

Icon 1 posted      Profile for droid1226     Send New Private Message       Edit/Delete Post   Reply With Quote 
To get the full effect of it, you should quit the oxys. but Dr. H says you could still take both but time the two separately and don't expect to get full effect of the LDN.

LDN is more powerful than any opiate for Lyme pain for me. No high though, just relief of generalized pain all over.

I use www.buyldn.com

It takes a few weeks but it's worth it. Ramp up wherever you get it.

--------------------
http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

Posts: 1181 | From ohio | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
norcal
LymeNet Contributor
Member # 29829

Icon 1 posted      Profile for norcal     Send New Private Message       Edit/Delete Post   Reply With Quote 
In my estimation LDN has been the biggest breakthrough in my recovery since i started treating 5 years ago.
I was getting ready to accept the fact that I would be in a wheelchair very soon.
Since starting this drug I have got my life back, moving and working full time.
Now on to make up for lost time!

Posts: 342 | From northern california | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
birdie67
LymeNet Contributor
Member # 35994

Icon 1 posted      Profile for birdie67     Send New Private Message       Edit/Delete Post   Reply With Quote 
Has LDN helped any of you with neuro issues or just pain and muscle issues?
Posts: 486 | From USA | Registered: Jan 2012  |  IP: Logged | Report this post to a Moderator
norcal
LymeNet Contributor
Member # 29829

Icon 1 posted      Profile for norcal     Send New Private Message       Edit/Delete Post   Reply With Quote 
I think it has improved my cognitive function a small degree.

The big change was when I could lean over and pick something up or even get up from a sitting position.

Muscles work so much better,up to 18 miles on the bike.

I have not done that in almost 20 years.

Leg / lower back neuropathy is better as well

Posts: 342 | From northern california | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432

Icon 1 posted      Profile for Ellen101     Send New Private Message       Edit/Delete Post   Reply With Quote 
I tried it several times and each time I suffered a horrible increase in my symptoms.

You can get helpful info here http://www.ldnresearchtrust.org/

Posts: 1747 | From United States | Registered: Dec 2011  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
LDN also caused me horrible problems and it took a long time after even just a 3 week slow ramp up to recover from the terrible effects for my body. I had not been that sick and debilitated since lyme / TBD was at its worst. It was like starting all over again but there was no way I could continue on LDN.

And I did everything correctly in the ramp up.

I was holding off on adding to the replies as I didn't want to discourage anyone. Still, Ellen's post reminds me that it is important to have a look at as much information and experience of others as possible before making a decision . . . and then if something does not go great, it's not such a shock.

Various accounts here:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=112225;p=0

Topic: Why does LDN cause my symptoms to explode?


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/110640?#000000

Topic: Does LDN make you feel tired?
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
norcal
LymeNet Contributor
Member # 29829

Icon 1 posted      Profile for norcal     Send New Private Message       Edit/Delete Post   Reply With Quote 
Keebler, I am thinking the reason is maybe some have had better success than others due to where they are in their treatment.

Maybe it is solely because everyones constitution is different.

Lyme disease is a twisty journey so I can believe that others would not necessarily experience the same results using LDN or whatever else.....unfortunately.

Posts: 342 | From northern california | Registered: Dec 2010  |  IP: Logged | Report this post to a Moderator
geronimog
Member
Member # 34875

Icon 1 posted      Profile for geronimog     Send New Private Message       Edit/Delete Post   Reply With Quote 
I've made my own (crushed it up, and divided into doses) and had both positive and negative experiences. The reason for this discrepancy is I used Revia once, and a generic the other. The generic was poison.

I have an ME/CFS presentation which makes one of my worst symptoms post-exertional malaise. Revia LDN helped me a bit with this symptom, while the generic crippled me. I couldn't even take my dog for a walk for several days.

I'm looking to get back on LDN and have an Rx from my doc. I'd rather buy Revia tablets to ensure I'm getting the good stuff, and also titrate my doses without having to pull apart capsules. Besides it's a lot cheaper to do it yourself.

Does anyone know where I can get Revia online without a prescription?

Posts: 65 | From Montreal | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
droid1226
Frequent Contributor (1K+ posts)
Member # 34930

Icon 1 posted      Profile for droid1226     Send New Private Message       Edit/Delete Post   Reply With Quote 
That's awesome norcal!

Gero, I can only find generic online....

--------------------
http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

Posts: 1181 | From ohio | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
Amanda
Frequent Contributor (1K+ posts)
Member # 14107

Icon 1 posted      Profile for Amanda     Send New Private Message       Edit/Delete Post   Reply With Quote 
Like Keebler, I had a horrible time with this drug.

I started outat 2 mg. And for 3 nights I had some vivd dreams, but all was fine.

At that time I had improved and was working part time

Then over the course of next few days it was hell. Horrible anxiety,really dark depression could not sleep for more than 2 hrs a night.
I have posts that you can look up.

I read the website of one of the initial founders for use in MS. Apparently for some people, your body doesnt break down the naltrexone, and it can build up.

So if you are one of those with any genetic detox problems like the HLAs or MTFH mutations, I would start as low as possible. Or you could only do it every other day

--------------------
"few things are harder to put up with than the annoyance of a good example" - Mark Twain

Posts: 1008 | From US | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hubby could not seem to tolerate this med. But maybe he ramped up too quickly. I do think from what I have read about other tickborne patients experiences that many with babsesia can't seem to take the drug.

At the ILADS conference -

The doseages suggested by one doc -

1mg at bedtime - month 1

3 mg at bedtime - month 2

4.5 mg at bedtime - month 3 and forward

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077

Icon 1 posted      Profile for CherylSue     Send New Private Message       Edit/Delete Post   Reply With Quote 
up
Posts: 1954 | From Illinois | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
Richard1062
LymeNet Contributor
Member # 19233

Icon 1 posted      Profile for Richard1062     Send New Private Message       Edit/Delete Post   Reply With Quote 
LDN did not help our daughter. She tried it twice, years apart, at 2 different stages in her illness but she thinks she had no response one way or the other.
Posts: 228 | From Mass. | Registered: Feb 2009  |  IP: Logged | Report this post to a Moderator
Littlesprout
LymeNet Contributor
Member # 7406

Icon 1 posted      Profile for Littlesprout     Send New Private Message       Edit/Delete Post   Reply With Quote 
LDN didn't work for me either. Made insomnia worse. Started at 1.5 mg sloe you to 4.5mg
It is cheap so worth a try

Posts: 315 | From USA | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
Andie333
Frequent Contributor (1K+ posts)
Member # 7370

Icon 1 posted      Profile for Andie333     Send New Private Message       Edit/Delete Post   Reply With Quote 
It didn't seem to make any difference for me.
Posts: 2549 | From never never land | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077

Icon 1 posted      Profile for CherylSue     Send New Private Message       Edit/Delete Post   Reply With Quote 
I started .5 LDN three days ago. First day was fine. Second day a bit loopy and fatigued. Third day, I felt loopy, fatigue, malaise (unwell), and woke up 4 times to urinate at night.

I may have to hold off for now. I was improving on cefuroxime axetel after my relapse in July. Couldn't handle malarone or Flagyl at small doses, either, anymore.

I think I may have to reduce my infections further and get them stabilized before I try LDN again.

Anyone want to add their experiences and how they overcame the herxing initially?

Posts: 1954 | From Illinois | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
nomoremuscles
LymeNet Contributor
Member # 9560

Icon 1 posted      Profile for nomoremuscles     Send New Private Message       Edit/Delete Post   Reply With Quote 
It is coming to light that some patients need much lower doses.

Many MS patients, and others, have developed terrible cramps and spasms, and various exacerbations, at 4.5mg and have been told to lower the dose back down to 3. But it seems for a large number of them 3 is still too high.

I just spoke with a guy last week who has been conducting two LDN studies, and he told me that many patients, with various IA diagnosises, need 2.5mg, or 2mg, or even less.

About three years ago I lowered my dose fro 4.5 to 3mg. Now, on his suggestion, I am going to try lowering it to 2mg.

Posts: 843 | From Eastern USA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
Member # 40917

Icon 1 posted      Profile for GretaM     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi,
3.5 was the magic number for me.

Took about two weeks of the weirdest dreams imaginable...

But made a huge difference in the muscle fibro type pain and also I don't get head colds anymore. Maybe once a year, instead of once a month like before the LDN.

If it's not too unbearable, I would recommend starting at a lower dose than you first tried, stabilizing past the weird nightmare part, and then tittering up.

Your doc might have some suggestions, or even a printout etc.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


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, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.