Low Dose Naltrexone

[Nicole13]

Hello,
I was diagnosed in September with MS after 1
5 months of being in limbo land. My doctor has me on low dose naltrexone and on the Swank diet. She also has me on multiple vitamins and what not. Is anyone else doing LDN therapy? or have they tried it in the past?

Thanks

[BarryD]

Hello Nicole,

I've been taking LDN - 1.5 mg for 6 months. It may just be a fluke of timing with RRMS but the brain fog pretty much went away in a week. I don't think it's helped with the numbness or anything else too much but that's fine with me.

It's good, surprising really, to hear of a doc letting you take LDN without a gun to their head.

I very much believe that I'm managing things really well thanks to LDN, a very healthy diet and knowing my body and listening to it.

Best,

Barry

[JerryD]

Nicole,
I have been on LDN for about 3 years. Its positive effects on my health cannot be understated. I believe that I would be worse off if LDN didn't help me sleep. I don't know if you are aware of LDN's mechanism, but it is an opiate antagonist. It works on the body's endorphin production mechanisms. At least, that is what i know about it. And, at the low dosages, under 5mgs daily, it is relatively harmless. Good luck

[Nicole13]

Well she has me on it for muscle spasticity. I was at 1.5mg but spasms got worse so she increased it to 3 mg, I'm not sure how much its helping yet. She also has me on topamax for optic neuritis and gabapentin for pain. I'm wondering if she thinks I have ppms. I am only 21 but rrms doesn't fit.

[pballer76]

LDN

What doctor prescribes this, neuro or pysch?
Can this be taking with another DMD?
I have heard great things about this and I wanna try it.
Does insurance cover it or am I on my own to pay for it?

[Nicole13]

My Primary Care Physician is the dr who is treating my MS and is the one who prescribed the LDN. I am currently not on any other DMDs. I am not sure how I feel about that. Seeming as how i am only
21 and ready to start nursing school, I want to do everything within my power to prevent a wheelchair. Anyways I am uninsured so I'm not sure about that. It isn't expensive though, about $35 a month for me.

[Myoak]

How is the LDN working out for you Nicole, Barry and Jerry? Keep us posted won't you?

[JerryD]

Myoak,
Glad you asked about the LDN. I have been on LDN for about 3years. I started at 3mgs daily at night before bed. I am now on 4.5mgs daily taken as before. I think it is working to help me sleep and have some sanity during the day.
If you are not aware, this drug must be 'compounded for you by a compounding pharmacist. Its 'standard' dose is 50mgs IM used to counter the effects of a 'heroin high'. Or any opiate high.
I had to 'doctor shop' to find someone who would use it in my treatment. It is not covered by my insurance (but should be, IMO). I have been dx'd with PPMS and there is no FDA approved treatment. I am on my own to find things that work for me. I hope you are well. Good luck

[Myoak]

Isn’t remarkable that PPMS patients are pretty much on their own as far as treatment goes? Jerry, I was wondering if you believe LDN has slowed or perhaps even halted disability progression for you? What are your observations having been on LDN for 3 years?

I will provide two quotes and include a link referring to a study published in 2008 about LDN being used effectively in PPMS.

Quote “Neurological disability progressed in only one patient”.
Quote “Our data clearly indicate that LDN is safe and well tolerated in patients with PPMS”.

http://www.ncbi.nlm.nih.gov/pubmed?t...le%20sclerosis

LDN is so inexpensive that there is just no financial incentive for large pharmaceutical companies spending tens of millions of dollars on drug trials. Primarily, trials are for drugs which can be patented and profitably marketed. That is understandable behavior; profitability is the goal of every company, drug or any other type of company.

As patients and caregivers we must realize that there are people like Jerry who are having success using off-label medicines like LDN and over the counter compounds like Alpha Lipoic Acid. No, you are not likely to hear about them from you neurologist who may be professionally restricted from presenting alternatives.

Until large scale trials take place, the FDA is not going to approve LDN or Lipoic acid for use in MS because they need scientific data upon which to base approvals. Large scale studies will not take place because there is no money in it. LDN and Lipoic acid are cheap. Inexpensive does not mean ineffective. Look at aspirin as an example. Both LDN and Lipoic acid have rock solid safety profiles backed up by several studies.

For example, http://www.academicjournals.org/jahr...nt/October.htm is a recent LDN study which is serving as the basis for using LDN to treat children and adults in Africa who have HIV. They characterize LDN as “a safe medication with no side effects” on page 187.

[Nicole13]

It seems to be helping so far. I started it in October at 1.5mgs and am now at 3mgs before bed. It has helped with my spasms, hasn't made them go completely away but my dr only wants to mess with one medication at a time and we had to adjust another medication. So when I go in in January she may up it to the max dose of 4.5mgs. I am not disabled yet. But I was noticing a gait disturbance which has gotten better. Its worth a shot. Its inexpensive. I hadn't even heard of it until my dr brought it up as a treatment option.

[JerryD]

Myoak,
I will say that, although I feel anxiety much more than I ever did in the past (thanks MonSter), I am be glad to endorse LDN's affect on my sanity. It could be a placebo effect. I'll take as win as a win. I can sleep, again. I can dream while asleep, again.
If my 'naturopath' utilizes it, and comfortably endorses its use, I'm all in. I can see that i have been 'off track' with diet and exercise for a long time. LDN is one of only 2 prescription medicines that I take. Everything I take, besides those two, are supplements, herbal or other.

[Myoak]

Nicole, your treatment which includes significant dietary changes is perhaps, the future for safe and effective treatment in MS. I have been studying compounds which affect autoimmune diseases and finding that there are many beneficial aspects to particular foods containing specific chemicals.

Anyone having a doctor employing diet as a therapeutic course of action in MS is very, very fortunate. Why? Because Dr. Terry Wahls, an MS patient and researcher, has had profound success treating her own MS through diet, as have many others. She has ongoing research which is well worth keeping up with.

JMHO, but a young MSer with a doctor like Nicole’s stands a good chance of having success without experiencing the sometimes awful side effects which every MS drug carries.

All of the meds used in MS have a far worse safety profile than LDN. That is not too strong of a statement at all. All of the meds used in MS have side effects you really do not want.

Jerry, you appear to be combining diet with LDN as Nicole’s doctor has recommended. Diets are murderously difficult but the pay off can be outstanding, don’t you think? Nicole, you are so young, you could truly impact the MS world by becoming a health care professional with your own testimony of treatment for MS. Keep studying LDN and diet. Keep us informed along the way. There are hundreds right now and possibly will be thousands of MSers and caregivers interested in your treatment because we all seek a better life.

You are so fortunate to have a doctor who is attempting to treat the disease, not just the symptoms of the disease. Be a good patient. Your success may depend on how well you follow diet, taking in helpful foods and compounds, leaving out destructive foods and compounds, and getting the LDN tweaked for optimum effectiveness personally.

What a pleasure to meet MSers engaged with diet and LDN. From my point of view, present research indicates you are on the right track.

[JerryD]

Myoak,
There isn't much in the way of prescription meds that I will take. I have found that there is a 'huge' benefit to LDN and very little to no side effects. No dmd's can make that claim. Your posts are reassuring.
I hope that you are following a diet and exercise course of treatment, alone or in combination with DMD's. I don't do the diet 'by the book', strictly. But at every chance, I go for the vegetarian option and whatever 'healthy' choice is on the menu. Along with Dr Wahls, another interesting take on treating this disease is 'Healing Multiple Sclerosis' by Ann Boroch.
IMO there has never been as much evidence that this MonSter can be can be beaten, as there is right now. I will NOT stop fighting MS, using everything I can. Good luck

[Myoak]

PPMS patients like Jerry might find a recent study of Amiloride in PPMS interesting. It was a small study but did produce good results for those enrolled.

Amiloride is a med currently prescribed for hypertension and congestive heart failure. It's logical to think that if you are a PPMSer being treated for hypertension or congestive heart failure you might want to suggest to your doctor that using Amiloride could benefit those conditions and MS, also. The safety profile appears to be well known and pretty good, too.

Nicole, be sure to check in once in a while and let us know how you are doing with diet and LDN as treatment for MS, won't you?

http://www.ncbi.nlm.nih.gov/pubmed?term=23365093

http://brain.oxfordjournals.org/content/136/1/106.long

[Nicole13]

I'm sorry I havent checked in. I guess I am feeling pretty down and out lately. I went to a neuro who took my diagnosis away. Said she needs evidence of one more attack before she can diagnose me. I started having double vision on thanksgiving. Hasn't gone away since. The opthamologist said astigmatism in both eyes. He tried corrective lenses and I still 4 of what was projected onto the wall. He then said my only option is laser surgery. I am not quite convinced that that is what it is considering it started so suddenly and hasn't gone away since then. So I am continuing on the LDN and the Swank diet just not being as strict. I am going to live my life and if they give me a diagnosis great. But I am not going to continue seeking just to be told they don't know.