Low Dose Naltrexone for RLS

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Goldy
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Joined: Mon Jan 30, 2017 1:00 am

Low Dose Naltrexone for RLS

Postby Goldy » Tue Feb 28, 2017 4:58 am

I would like to ask the group if anyone has tried Low Dose Naltrexone for Restless Leg Syndrome. I haven’t taken it myself as my RLS seems under control at the moment - I have done a lot of research and it seems extremely safe and there are many people saying that it has worked extremely well for them.
A little background on LDN (Low dose Naltrexone). Naltrexone is a class of drug known as an opiate antagonist. Its normal use is in treating addiction to opiate drugs such as heroin or morphine. The dose used for this purpose is usually between 50 and 300mg daily. However low dose usage is only 0.5mg to 1.5mg. It is therefore extremely safe and has not been found to be addictive or cause augmentation. The LDN works by briefly blocking the endorphin receptors of the body, usually at night for a few hours. In response the body results in a reactive increase in the production of endorphins, which should result in a reduction of painful symptoms and an increased sense of wellbeing. A lack of endorphins is linked to RLS.
Increased levels of endorphins should be expected to stimulate the immune system, promoting an increase in the number of T lymphocytes. This effect was observed in Dr Bihari's research. This increase in T-cell numbers apparently restores a more normal balance of the T-cells such that the effects of the disease process are significantly reduced.

Low Dose Naltrexone (LDN) may well be the most important therapeutic breakthrough in over fifty years. It provides a new, safe and inexpensive method of medical treatment by mobilizing the natural defenses of one’s own immune system.

https://www.ldnscience.org/resources/in ... enwald-rls

https://www.youtube.com/watch?v=RmNGPcDYVBs

https://www.ldnscience.org/resources/in ... -weinstock

http://www.lowdosenaltrexone.org/others.htm

ViewsAskew
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Re: Low Dose Naltrexone for RLS

Postby ViewsAskew » Tue Feb 28, 2017 8:19 am

Unfortunately, the dratted phpBB software won't let you search on three letters - so I can't find older posts about LDN that I am almost positive exist. And searching on naltrexone only found recent ones. Only two people recently have posted about it. I was told by my neuro that it couldn't work for us. But, I do not remember why he said that - and it was at least 8 years ago when I asked. Searches online show mixed results. Some say it helped, some say it caused worsened RLS. Almost no research, that I know of, about it, however. Which makes it much less likely a regular doc will prescribe it.

If you try it, let us know how it works for you.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Location: Palo Alto, California

Re: Low Dose Naltrexone for RLS

Postby stjohnh » Tue Feb 28, 2017 4:32 pm

I tried it for a few days a year or so ago. No effect on a short trial.
Blessings,
Holland

yawny
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Location: Washington

Re: Low Dose Naltrexone for RLS

Postby yawny » Wed Mar 01, 2017 1:01 am

Goldy, thanks for such a well written summary of low dose naltrexone (LDN). I was glad to see you include a link to Dr Weinstock's work with it. He has eliminated RLS in many patients after treating them for SIBO (small intestinal bacterial overgrowth). I say eliminated because my understanding is that RLS symptoms reappear if the patient stops taking their LDN. I tried LDN as part of a treatment for SIBO. I didn't realize that RLS sufferers also took LDN as a stand alone treatment. After getting treated for SIBO, I took LDN for 4 months after Dr Kresser, in the below article, suggested giving the medicine at least 3 months to see results. In the end, I did not see any improvements in my RLS.

https://chriskresser.com/4-little-known ... -syndrome/

Last year, I found the above article and asked my naturopath if she'd test me for SIBO. I didn't have overt digestive symptoms that were complicating my life so I figured the test would most likely be negative. It wasn't. I had positive results. The treatment was a little cumbersome in that I had to change my diet for about a month. But I kept my eye on the prize...no RLS, so I was very motivated.

Following the guidance of Dr Siebecker (http://www.siboinfo.com), a SIBO expert, my naturopath started my treatment with antibiotics for around 10 days. During that time, I ate foods that fed the bacteria so they'd be super happy and not hide from the medicine. As soon as I finished the antibiotics, I started the SIBO diet and LDN. The diet wasn't hard, just different, and I was never hungry. I learned to make my own yogurt! So cool! I took the LDN before bed and as reported it disturbed my sleep. I found myself more aware of everything so I was easily awakened. I tried different doses ranging from 3mg-1mg and landed on 1.5mg as the highest I could go without disturbing my sleep. My naturopath told me to go as high as I could to 4mg as the higher doses usually show the most therapeutic returns. After 4 months, I stopped the LDN because at the time my sleep was still not stable and I was trying out treatment options from a blank slate. But because of the research I did on it, I still think it's a great option for overall health in general. I heard an interview with Dr Bihari's widow where she explained that all the doctors that were treating their patients with LDN were, along with their families, taking LDN too because the drug was proving to be an incredible treatment, and preventative, for autoimmune disease.

erika13
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Location: Tokyo, Japan

Re: Low Dose Naltrexone for RLS

Postby erika13 » Wed Mar 01, 2017 5:06 am

Hi Yawny,

Have you tried taking the LDN in the morning? Some people get excellent results and find taking it in the morning doesn't disturb sleep.

I was just about to add a link to an interview with Dr. Leonard Weinstock, who has been getting excellent results using low dose nalrexone.

It’s a fascinating approach.

He is actively researching the connection of the gut and small intestinal bacterial overgrowth (SIBO) with several medical problems including RLS.

Here is a link to an interview about his research and work in this area:

https://www.ldnscience.org/resources/in ... -weinstock

He’s treated over 250 RLS patients successfully.

However, for the treatment to be successful, ferritin levels need to be above 75 and vitamin D high as well.

I am taking Kratom to manage my symptoms at the moment, but will I will try his approach, when I get my ferritin levels up.

Goldy
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Joined: Mon Jan 30, 2017 1:00 am

Re: Low Dose Naltrexone for RLS

Postby Goldy » Wed Mar 01, 2017 6:15 am

Thank you all for your comments - especially interested in Yawny's experience as I haven't tried it as yet. I agree it is a wonderful medication to take for many chronic illnesses as I have personally known people with debilitating fibromyalgia, chronic fatigue etc get amazing help...but as for RLS I am not so sure. People's experiences are the best indicator.

ViewsAskew
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Re: Low Dose Naltrexone for RLS

Postby ViewsAskew » Wed Mar 01, 2017 7:54 am

I'll go out on a limb - albeit a pretty thick one - and say that my gut (pun intended) tells me that this is one of the ways in which we (as sufferers) are likely to be different. We have at least five genes implicated and they likely work in different ways. The painful vs electrical RLS is the most obvious. Then there are those who improve with vein surgery, but only a small percentage of us. The constellation of symptoms suggests that there isn't one cause, nor one treatment, for us.

We have several people here who've followed a diet protocol - such as Wahls - to reduce SIBO and this resulted in reduced RLS. Am trying to think if anyone eliminated symptoms completely...don't think so. But, to reduce medication by 50% or more as some have done is pretty darn wonderful. Along with iron, a change in diet is highly recommended as a great starting point. As with yawny, my guess is that some of us will not get any help, some will get some help from it, and a few will get a lot of help from diet. Not sure where the LDN will come in.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SLEEPY ANGEL
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Joined: Fri Feb 10, 2017 4:34 pm

Re: Low Dose Naltrexone for RLS

Postby SLEEPY ANGEL » Wed Mar 01, 2017 10:40 pm

For goldy---
I am going to make a note of this Naltrexone to ask my Neurologist about it... for future possibilities we might consider. My concern is that heavy duty pain killers (usually opiates) are not tolerated well by my tummy! I barf every meal. I had an accident when I was 27 years old using a power table saw, and cut off several parts of fingers on one hand; in the hospital they should have figured out that I needed the painkillers dripped into a vein to avoid the stomach upset. I have NO idea how much or at what dose was given to me every day, so it would be an experiment for me to try LDN --- and at least it IS a LOW DOSE!!! Thanks for bringing this subject up.

yawny
Posts: 165
Joined: Sun Nov 08, 2015 4:20 pm
Location: Washington

Re: Low Dose Naltrexone for RLS

Postby yawny » Sat Mar 04, 2017 12:05 am

A couple one offs that I forgot to mention...

My naturopath told me the use of the LDN during the SIBO treatment was to encourage motility in the small intestine.

And, one positive I did have while on LDN was more bladder control during the night. I had read about it and then noticed that I got up less to use the restroom, as in not at all.

If anyone is interested in getting LDN prescription, I highly recommend getting it through mail order from Skips Pharmacy in Florida (skipspharmacy.com). They know what they're doing and come highly recommended. Out of pocket, it costs around $20/month. It's recommended to start low and titrate up.

yawny
Posts: 165
Joined: Sun Nov 08, 2015 4:20 pm
Location: Washington

Re: Low Dose Naltrexone for RLS

Postby yawny » Sat Mar 04, 2017 12:06 am

erika13,
Dr Weinstock's work is fascinating to me too. My naturopath knows him from conventions and says he's a really nice doctor and doing good work. I didn't realize that ferritin and vitamin D levels were important to the process. That could be at least one reason for it failing for me as my vitamin D levels are always low, no matter what I seem to do, and while my ferritin level is climbing, I don't think it was near 75 at the time of my SIBO treatment. Hmmm. Also, I don't believe I did ever take LDN in the morning. I'm on the sensitive side and my neurologist often has me taking medications in the morning when most of his patients take the same in the evening. BTW, this same neurologist thinks LDN is a very compelling medication and suggested that I stay on it. So you've definitely got me re-thinking things. Thank you for this information!

Do you know if you can take LDN if you're also taking Kratom?

erika13
Posts: 29
Joined: Sat Apr 06, 2013 4:54 pm
Location: Tokyo, Japan

Re: Low Dose Naltrexone for RLS

Postby erika13 » Sat Mar 04, 2017 3:48 pm

Hi Yawny,

Yes, Dr. Weinstock’s work is fascinating.
He did say that the LDN wouldn’t be effective unless both ferritin (>75) and Vitamin D levels are high.

I would definitely try the LDN in the morning and see if it helps.

Please let us know how you go!

Unfortunately I don’t think I can take both the LDN and the Kratom at the same time .. from my understanding they compete for the same receptor … the LDN acts as an antagonist… I need to do some more research!

Good luck and please let me (and everyone!) know how you go with it.


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