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?
Posted by GretaM (Member # 40917) on :
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.
Posted by droid1226 (Member # 34930) on :
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.
It takes a few weeks but it's worth it. Ramp up wherever you get it.
Posted by norcal (Member # 29829) on :
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!
Posted by birdie67 (Member # 35994) on :
Has LDN helped any of you with neuro issues or just pain and muscle issues?
Posted by norcal (Member # 29829) on :
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
Posted by Ellen101 (Member # 35432) on :
I tried it several times and each time I suffered a horrible increase in my symptoms.
- 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.
Topic: Does LDN make you feel tired? -
Posted by norcal (Member # 29829) on :
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.
Posted by geronimog (Member # 34875) on :
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?
Posted by droid1226 (Member # 34930) on :
That's awesome norcal!
Gero, I can only find generic online....
Posted by Amanda (Member # 14107) on :
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
Posted by seibertneurolyme (Member # 6416) on :
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
Posted by CherylSue (Member # 13077) on :
up
Posted by Richard1062 (Member # 19233) on :
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.
Posted by Littlesprout (Member # 7406) on :
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
Posted by Andie333 (Member # 7370) on :
It didn't seem to make any difference for me.
Posted by CherylSue (Member # 13077) on :
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?
Posted by nomoremuscles (Member # 9560) on :
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.
Posted by GretaM (Member # 40917) on :
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.