Low Dose NaltrexoneTherapy
This has become a rambling story, with a beginning, a middle and an end.
From time to time I cruise the web with AltaVista with search terms like '"multiple sclerosis" +therapy' (or '+treatment') and one day my search threw up The Low Dose Naltrexone Homepage. Naltrexone is used for treatment for people dealing with drugs of addiction, but it has been found to assist with a number of diseases including MS.
Now, obtaining LDN is not easy. You can obtain 50mg tablets but not 3mg. It requires a co-operative pharmacist.
I have jumped the first hurdle: I have a prescription. Now I just have to get it filled.
I had been in correspondence with the LDN people, explaining how long I'd had MS, my general state of health, what other medications I took etc etc, and the responses were prompt and helpful. One time I wrote:
I have been reading the detail of your website, and I can't see how LDN works. I understand that the common treatments for MS - Avonex, Betaseron & Copaxone - work by suppressing the immune response, whereas it seems that LDN boosts the immune response. Have I read your page correctly?
...and the reply was:
Good question. Future research will delineate the answers, but there is already evidence of a low endorphin state prior to the clinical emergence of an autoimmune disease. LDN up-regulates the endorphin levels [which appears to "call off" the dysfunctional autoimmune response as seen in, for example, MS].
I think this is code for "it's a mystery."
As I thought about the difficulties of making up the 3mg tablets/capsules of LDN, the option of importing it from NY looked more attractive. Yes, I had done enough university chemistry to do it myself, but I didn't have the equipment. A pharmacist could do it for me, but they would need to charge me an hourly rate to do it.
I went to the pharmacy who had imported lofepramine for me (see my Cari Loder page) and asked them to get it. After three weeks, they told me it would be easier for me to get it myself (they had talked with the Therapeutic Goods Administration who'd told them as much). And breaking the 50mg tablets down into 3mg lots would be difficult, the pharmaceutical company had told them.
I picked one of the parmacies listed on the LDN website, phoned and faxed them, and waited.
The pharmacy in NY suggested FedEx and I gulped (quite expensive) but said yes. They despatched the package Thursday and it arrived in Australia on Sunday. THEN it had to slowly grind it's way through Customs. It is not legal to import Naltrexone to counter the effects of alcohol or heroin, but it's okay for other purposes. All you have to do it declare the purpose. I'm glad that FedEx shepherded the package through the customs process. I'm not sure it really had to mean that it would be another 8 days to get to my door.
And I'd been on the phone to them at least twice but they had omitted to mention that someone had to sign for the parcel, and that they are closed over the weekend.
While I waited, I did more search engine searching with Google, and I found even more LDN info. This was perhaps the most interesting, in spite of the unreadable transcription of the interview with Dr Bihari. I have re-transcribed the interview here.
I started taking 3mg Naltrexone that first night at bedtime. I had disturbed sleep for the first 2 nights, after which I slept perfectly. I could perceive an effect but it wasn't anything spectacular. I held on to the image of the MSer who "needed to use a walker ... On the third night after starting LDN, she got up and went to the bathroom without using the walker".
Well, it wasn't the third night for me. Or the fourth, or the fifth. If there was a change, it had to be worth $AUS2 per day. Although I did notice a reduction in muscle spasm (but that had never really bothered me). I went out to dinner on the 6th night, and perceived less intoxicating effect from alcohol.
The LDN page mentions that the dosage can be either 3 or 4.5mg. No time like the present, I thought: I upped my dosage to 4.5mg - I took a 3mg capsule and emptied the contents and divided them in two -- one half plus a whole capsule = 4.5mg!
Another 2 nights of disturbed sleep. And a third. On the 3rd day I felt pretty bad, but continued with the 4.5mg for a 4th day which only confirmed that this wasn't such a good idea: sunrise I feel great, by sunset I'm asleep.
As I lay in bed on the 4th night of 4.5mg, and I was composing in my head the terse email I would send to the LDN people, it occurred to me that I should try a reduced dose - there is reference to a lower dose in the LDN page: "The therapeutic dosage range for LDN is from 1.75mg to 4.5mg every night".
It could not be said of me that I give up easily.
How does this end? Not with a bang but a whimper. I took the reduced LDN dose for 4 days and - surprise surprise - nothing happened. So I stopped. I wrote to the LDN people, I was not terse (what would that achieve?) and to their credit they replied. My conclusion is (like so many other things) that I should have started years ago.
But you can't say I didn't try.
That was 8/01. Here it is 5/04 and I receive this email:
I take it I have the right person, your site wasn`t very clear about
e-mailing you....I take it you are Tim Potter?
I was interested to read that you tried LDN for a very short time. Did you
get any medical advice on the procedure? From what I read you took the
treatment blindly and said it didn`t work and it made you feel worse. This
is indeed what happens when you take LDN for the first time, your symptoms
appear to get worse, but this is short lived and should pass within 7days,
then things should improve. I have been taking it for over one year now and
it has changed my life for the better. I am part of a worldwide campaign
team calling for trials on LDN. Many, many people (around 400) here in the
UK are taking this wonderful treatment and having great success with it.
Could you please fill me in on your experience and whether you had any
I look forward to hearing from you.
Now I do not know what to think. My neuro is overseas, but when he comes back....
I've decided to put LDN on the back burner for the present. The neuro I see is less than keen and I can cope without it for the moment. My book on LDN is not closed, just put aside!
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