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Linda: I’d like to introduce Chris from Scotland, who has primary progressive MS. Welcome, Chris. Can you tell us when you first started noticing your MS symptoms?
Chris: It’s right about 2004 when I was around 55 years old. The symptoms came on as problems with bladder control, feeling tired, and so on. It was a very slow realization that I put down to my age. Initially I was tested in 2005 because I was falling down in the street and people were looking at me as though I was drunk, but I was losing balance, tripping over, and falling in the street, so our doctor referred me to the local hospital to get some tests. It took about two years for the neurologist concerned to tell me that I had MS. I was a busy man at that time. I had three retail outlets, we did lots of contract work and this sort of thing, so I was here, there, and everywhere; and everybody’s everybody point of reference thing, so I realized I had to make some alternative arrangements for my business, and there was a lot of stress and a lot of difficult times. It took between 2004 and 2008, I think, to realize I wasn’t going to get any better.
Linda: How did you hear about LDN?
Chris: My neurologist was a disappointment, so I invoked my private health care policy and chose another neurologist, who confirmed the diagnosis and referred me back to the other neurologist, who wanted to give me a steroid IV over a three-day stay in hospital, and I point plank refused to take that and did a lot of research on my own and came up with the LDN solution. I read a book by and Irish lady whose husband was..
Linda: the book would be Up the Creek With a Paddle by Boyle Mary Bradley
Chris: I researched even deeper into that and decided well, if it’s good enough for Dr. Bihari and those guys to try, I’d try as a starting point. It took a while for my local GP to agree to prescribe LDN. He said he had a family to think about and was not going to get involved in this sort of quack therapy. I pressed the point with one of the other GPs at a later appointment and she, who’s the senior GP in the practice, saw what I was trying to do. I presented her with all my findings. LDN was on the NHS list of approved medications, but unfortunately the filler was calcium carbonate which my research through Skip Lenz shows apparently it’s a sort of counter-actor to LDN and negates the effect. Now I have a filler Avicel, for me, the preferred filler for LDN. My dose is between 3.0 – 4.0 mg, depending on how I feel. All available through my local GP at no cost to me.
Linda: Did you notice any introductory side effects?
Chris: Yes. Some great dreams of all sorts of weird little things for the first few weeks that settled down, and now I have LDN with absolutely no side effects.
Linda: Has LDN helped you at all?
Chris: I can only assume a beneficial effect, not knowing what the alternative would have been had I not taken LDN and gone for something else. My theory or philosophy on this is that I done want to ingest any stuff that’s on the drug market for the satisfaction of everyone except myself. I prefer to go with the low bang of LDN rather than the big bank of some of these steroidal drugs. I can only assume LDN is holding on to my MS, preventing it from progressing quite as quickly as I would otherwise normally experience, without the essential side effects, and restart.
Linda: Have you noticed any improvement at all, or have you just remained the same?
Chris: It’s clear the MS is not going to go away, but there is no remedy that cures this problem. My life has been modified not only in terms of the drug and the condition, but also in terms of my workload and work-life balance, and all the rest of it. So I keep taking LDN and assuming that it’s kind of holding on to where I was 2-3 years ago.
Linda: Have you noticed any improvement in your bladder or fatigue or anything? Is there anything that you’ve noticed is better?
Chris: The answer is no. I still have the fatigue and difficult bladder control, and all this sort of stuff, and other essential part of MS. But I’ve never seen LDN as a cure, rather as a means of holding on to my condition at the point at which I first started taking it, and slowing its progression.
Linda: Most people when they start taking it their bladder starts to improve and the fatigue isn’t quite as bad. Have you noticed any improvement in any of these symptoms?
Chris: I remember quite well the chapter in the book that said that somebody had said well, LDN isn’t working so I’ll stop taking it, and their account of that is that within three days or so, they were all over the place and they went back on the LDN and realized that LDN was in fact helping them. So, I don’t want to go down that route. I keep taking LDN.
Linda: So your symptoms are exactly as they were when you started LDN?
Chris: I don’t see that there’s been any great improvement.
Linda: Not even slight improvement?
Chris: I can’t say it’s improved, but that it has held on to it. Maybe there was slight improvement when I first started taking it for sure, but since then it’s kind of held on to the way it is.
Linda: Well, thank you very much for sharing your story with us Chris, I really do appreciate it.