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Bill from the US shares his Multiple Sclerosis (MS) and Low Dose Naltrexone (LDN) Story
Linda Elsegood: I'd like to introduce a bill from the United States who takes LDN for multiple sclerosis. Good morning, bill.
Bill: Good morning.
Linda Elsegood: Really nice to talk to you again. And I'd also like to take this opportunity of saying thank you for being such a great advocate of LDN and for the fundraising that you do it is appreciated.
Bill: Thank you and you do a lot more than anybody else that I know of.
Linda Elsegood: Thank you, now you have got multiple sclerosis. When did you first start to notice symptoms?
Bill: Well, I had some symptoms probably as far back as the light seventies but they didn't stay with me long enough to really worry about it.
I lead a pretty active life, so I figured it was something that I probably overdone or something like that. But finally, in 1998. My whole left side went numb, and it wouldn't wake back up, that's when I really felt like I had a major problem, and when I started looking into what might be wrong.
Linda Elsegood: And how old were you then, bill?
Bill: I was 49 years old. And to put it bluntly, when I was diagnosed with ms, I was absolutely shocked because I have a sister that also had MS and I'd always been told it was not hereditary and two people in the same family can get it,, that was all wrong.
Linda Elsegood: how did having MS impact on your life bill?
Bill: Well. As a full time paid firefighter, it impacted my life immediately in that I could no longer do that. Once I was diagnosed with ms, I had to come off the fire line, so I had to make arrangements to try to do some more training or something in order to stay with the fire service.
So I had to go back to school and become certified as a Fire Marshall.
Bill: And at the same time, try to figure out how to deal with MS, it was very traumatic. Once I was diagnosed, the symptoms started to happen and I progressed very rapidly. Fortunately I had very good insurance, so I was able to do a lot of things that some people might not be able to do.
But to make a long story short, I went through every treatment, every approved treatment that you could take for MS and a number of treatments that weren't approved for MS. But everything I've tried seems to speed up the progression of the MS, or has it slow it down?
And so from 1998 to 2002 I went from a relapsing-remitting ms to secondary progressive MS. And by 2002 I was completely wheelchair-bound on oxygen, 24 hours a day. Catheterized, I had to wear a bib to eat, and I was given in 2005 14 months to live, and I've been on everything from chemotherapy to all the ABC drugs to plasma exchange, and it was about that time that I read about LDN. I started looking into it, and I found Dr Gluck, and I called him, we talked for maybe four hours and, oh, what a special man. I got all the information I needed and went back to my neurologist and he would not even consider prescribing it for me.
So I went to another neurologist, and she actually wanted me to go back on chemotherapy, and I told her I would, but that I've already been on it and I almost died from it. So I would like to try LDN before I did that, and she said, well, I've never prescribed it before, and it's not approved. And I thought, here we go.
But then she said, but since you've already been on everything, I'm going to prescribe it for you. But you've got to agree that if after three or four months you haven't seen any positive results, you'll go back on the chemotherapy, I said I agree 100%
so I started at 1.5 milligrams in July and in October, I went back to my neurologist, and I walked into her office with no assistance. I had no braces on my legs, and I had not had a problem with my MS in the whole three months. It just blew her away, she called all her nurses, and everybody was chattering. I said let me go back a little bit too before I started the LDN, I was having an episode with my MS every month and would lose more abilities.
Once I started taking the LDN, I went over five years without having any episodes whatsoever. I've had three minor episodes since 2005, nothing that slows me down from doing what I wanted to.
Uh, it's just been absolutely incredible. My pharmacy bill went from just under $3,000 a month to less than $50 a month. And, I actually, the full price for LDN here in my hometown without insurance was $36 a month. And my insurance actually pays for all of it, but $6. The rest of the pharmacy bill is mostly vitamins.
I did have some problems with my kidneys and bladder because of chemotherapy. So I do have to take some medication for that, and I have to take them for the rest of my life. But that was not for MS. it was for the damage caused by chemotherapy.
Linda Elsegood: You said that you were characterized, were you able to have that removed?
Bill: I don't have to have that anymore. I have kept the oxygen, apparatus and stuff at home just in case as I didn't want to have to buy it, if the time should arrive, and I needed it again, but I haven't had to use anything since I started taking the LDN.
Linda Elsegood: Do you have any symptoms at all now?
Bill: I do have a few symptoms. I have some tingling. Uh, I do have to be careful about overdue things. Uh, I actually run a community garden here now, I have a five and a half-acre garden, and we grow everything, and we give it all away. Well, naturally, a garden is a pretty physical operation.
Bill: I have to be really careful. I have overdone myself a few times, I'll be the first say LDN is not a cure, but it has allowed me to do so many things that I thought I'd never be able to do again. And I'm kind of like you, I look at every day as a gift and an opportunity to do something for somebody else.
And so. That's why I run this garden. I do a lot of volunteer work here in my hometown. I'm on a lot of boards and stuff. In fact, I just got back from Florida. I'm on the board of directors for our local housing authority, and I had to go to a five-day conference down later. Well, with MS, you can imagine the stress and stuff that was put on you if you were really suffering from MS, and I had no problems while I was there.
Linda Elsegood: Fantastic. It's just such an incredibly inspirational story for other people to go from somebody who was so very, very sick to be able to lead a normal life. I know you still have boundaries that you can’t cross, but it seems as though you're able to carry on with your life, providing your care.
Bill: Well, I do. And, and I'll tell ya, I'm a lot more open with people now than I was, 20 years ago I was kind of a shy person. Now if I see any person that's having problems walking or has a problem with anything, I'm the first one to go up and say look. I'm not trying to be too personal, but let me tell you my story, and I tell him about me, and then I ask them about themselves and, and if it's something that is wrong with them that I think LDN we will help with that. I jumped right into it, it's good that I've been able to at least introduce people to it, I don't push it on anybody. I'll just introduce them to it and say, look, here's the information and give me your email address and I'll send you websites and stuff, and you can look at it and decide for yourselves. And I do know that my neurologist now prescribed it for over a hundred people, a compounding pharmacy here in my town.
Which is a small town? We have about 12,000 people here and about 70 people, get their prescription filled at our local pharmacy. They had actually never heard of naltrexone before. I asked them for it, and they actually had to call Skips in Florida to find out about it and now they have like 60 or more people.
Linda Elsegood: So what does your neurologist actually say about your health now?
Bill: Uh, she said it's amazing and, and one of the things that I think that is a big plus, I give her name and telephone number to people from all over the world,if their neurologists have a problem with it or don't know anything about it, they can call her and ask her and the very first thing she's going to tell. Any medical person is that LDN will do no harm. Yeah. And that is such a big deal. I've had doctors say, well, it's an opiate, you don't need to be taking it, well, it's not an opiate, it's actually an opiate blocker.
Bill: But the biggest thing doctors need to know is that it will do no harm. But chemotherapy I took was not approved for MS, and I almost died from it. And they were ready to prescribed that. And I thought, well, why won't you prescribe LDN? Because they're all no side effects to it, I mean, not any major ones. And you know, the only one I really know of is dreams. I kind of enjoyed the dream.
Linda Elsegood: I didn't have any side effects whatsoever.
Bill: I've had absolutely no side effects from, LDN. In fact, I was looking forward to the vivid dreams because at the time I started taking it, I was getting less than an hour sleep per night and if I had vivid dreams, that meant I was sleeping. And that was really one of the reasons they said I only had 14 months to live. I had a kind of sleep apnea. The Mayo Clinic told me that they had only seen two other cases like mine and both those should already be dead.
Uh, when one hour in 24 hours, I mean. I've never slept for more than five minutes at a time, and then I would go two and three days with no sleep, and my kidneys would shut down. My heart would start acting up. I couldn't swallow. Uh, there were just so many frightening things, and the breathing got to be a severe problem, and there's nothing more frightening than not being able to breathe.
I mean, it is scary, but once I started taking the LDN, for whatever reason, that just kind of went away. And I've really had no problem with the sleep apnea, I've had no problems with breathing.
Linda Elsegood: How long would you say, bill it took before you noticed any improvements.
Bill: I was completely wheelchair-bound when I started taking the LDN. Well, our bathrooms were not handicap accessible, so I would have to go in my chair to the bathroom door, and I had a wall bar inside the door and I would transfer from the chair to the bar and slide over to either the toilet or the tub or the sink.
Well, as I got into trying the LDN, I started noticing a little bit more strength in my legs and in my hands. And rather than having to sit on the bar and shuffle my feet. I could take a few steps, and I actually have a, have a bench that straddles the bathtub, and I would sit down on the bench and slide over into the tub I didn't have to do that anymore, I could step over. I had to hold on, of course, but I could step over into the tub. And so all of those things were definitely improvements. And then I was able to take the chair to the door and, and do everything I needed to do in the bathroom without the bar.
And then I got to where I was doing a little bit of walking in the hallways and stuff and just a little bit more, a little bit more. I was really fortunate we have a pool, and so I could do a lot of stuff in the pool, but I couldn't necessarily do outside the pool. So then I was walking, and I got my cane back out and got to put the wheelchair up, and then by the time the three months I had to put it up, and this was leaning up against the wall.
Linda Elsegood: Thank you very much for sharing your story with us. I really appreciate it.
Bill: I look forward to telling it to anybody that'll listen.