Paul from England shares his Chronic Fatigue Syndrome (CFS) & Low Dose Naltrexone (LDN) Story

Linda Elsegood: I'm joined by Paul from England and Paul uses LDN for ME. Thank you for joining me, Paul. Could you tell us when you first noticed the symptoms of ME? 

Paul: For me, it started, I would say, um, in my early teens, um, I was involved in a hit and run car accident when I was four, and it left me with quite a serious head injury.

And as I got older, I certainly started to struggle with flu symptoms, but specifically a lack of, uh, of stamina and energy. 

Linda Elsegood: Goodness. And how old are you now? If you don't mind me asking? 

Paul: Yeah. I'm 57. 

Linda Elsegood: Oh, goodness. So you've had it a long time. 

Paul: Yeah, a long time., 

Linda Elsegood: So how did your life between your early teens and now? Well, before you started LDN, let's go up to, from that point to your

pre- LDN days. 

Paul: Yeah. Um, I think, uh, perhaps by the time I was 30, I was really starting to suffer to the point where I was, I was desperately searching for some help. And that was living on painkillers to combat the flu symptoms. Um, of course, the doctors really thought that there was nothing. Well, they couldn't understand what was wrong with me, but they would say that painkillers don't do any good

And of course, the traditional action was mentioned. So I was put on antidepressants. Um, that's not to say there wasn't some psychological issues in my life because like, sadly everybody, we lose loved ones. And, uh, as an only child, I had to deal with quite a lot of responsibility. Um, and just the frustration of not understanding what was wrong with me.

Um, And sadly holding a job down for a while became difficult. So, um, I'm sure I did become depressed but it wasn't depression first; it was definitely, um, some damage done to my nervous system. I thought so anyway. 

Linda Elsegood: So, could you describe before you, um, started LDN? What a typical day for you was like?

Paul: Right. Um, waking up at any time of the day. I mean, sometimes I'd be waking up very early. Sometimes I would sleep till late afternoon. Um, the cycles weren't sort of, um, they weren't regular or regulated, so I would wake up quite exhausted. Um, and sleep was definitely not refreshing sleep. And if I did any sort of exertion during the day, it wasn't, I could pay for it for several days, if not a couple of weeks, depending on what I did.

So I was living in constant exhaustion and this isn't tiredness; it's a deep exhaustion that takes your mental capacity. Um, physical, so it's a bit consuming, um, cause you don't really have an answer to 

this. And until I got a diagnosis, which took ever so long, because obviously, like many other ailments ME wasn't recognised.

Uh, certainly not in this country so well, um, but once I did get some recognition I started to take my health more seriously because I knew it was an actual problem and what it was so I could focus. Um, but yeah, the mental fog was  terrible because you didn't have the capacity to read or to watch telly. The attention span was ever so short.

Um, sheer exhaustion rather than lack of interest.

Linda Elsegood: And how did you hear about LDN? 

Paul: Yeah, it was about ten years ago. Um, I did some research, so I had been doing research on my condition anyway, but certainly, um, my immune system was bad. I had struggled from a very early age with a bad immune system. So I was looking for things that might help, and LDN certainly came up on the internet and, um, I watched, you know several home grown films if you like, but lots of people were saying then that it was certainly helping them for various things as we know.

Um, but I never actually had the confidence to go and ask my doctor. Um, so this was ten years ago, and I actually forgot all about it until about six or seven months ago. And it came back to me because of becoming more aware of my own body and certainly becoming a bit more desperate because I was picking up one cold after the other. I was having antibiotics one course after the rest and i thought, "This can't carry on because the ME won't tolerate that. Um, so I, uh, I found a reference to a certain chemist in Scotland. And, um, I got the, and they were a compounding chemist and from there we went through a private doctor who sort of spoke to me in detail and eventually was happy to prescribe.

Um, it's been four months now I've been on LDN. 

Linda Elsegood: And what's your experience been so far? 

Paul: Right. I think the first night that I took, uh, because, uh, patients, um, and people with a damaged autoimmune system, which is obviously covering lots of things, but they said to start on perhaps 0.5mg. So I did, but when I woke up the next day, I actually felt quite.

elevated. I was very calm. I'd had a cold sore for weeks and the doctor was going to prescribe a tablet that you can take as you perhaps know, to dry this up, to stop the virus This had dried up overnight. So that was my first understanding that this has actually got something about it.

Um, over the next few months - oh -  initially weeks I started to increase the dose, um, and I got to about 2.5 to three milligrams, but then it was also causing some side effects, which was the increased flu symptoms. So I took it back again to perhaps one milligram. And now, four months later, I've slowly brought it up to the point where my tolerance is, is fairly good.

It's about two milligrams, and I've never had a cold in all that time. So. Um, little cuts and scratches that would take possibly a week to heal, virtually the next day. Um, I can guarantee a little cut will be not healed, but on its way to healing. This evidence is amazing , um, that in itself, um, for me, was enough evidence to continue taking it.

Um, and it's very affordable. So. You know, um, it's something I'm going to continue to take for the rest of my life. I'm guaranteed  this sort of, uh, response, which is helping my health. It's no Maricopa, but it's definitely offered me something, and it's helping my immune system. I can feel it. 

Linda Elsegood: And what about your sleep?

Are you sleeping better? Are you feeling refreshed? 

Paul: I wouldn't say things have gone quite that far because my ME has gone unchecked  for decades. So I've gone a little bit too far for some things to help that quick, but I am feeling a difference. I am. I mean, I can think, um, and that can vary of course, but there is a definite  increase or improvement in my cognitive abilities and I feel confident maybe six months, maybe even towards a year of taking this I feel that that will improve certainly to some level because I already feel it has, it's generally better. And my cognitive ability, I certainly have a broader span of it, you know, instead of it being like 10 minutes which sounds ridiculous to anybody that's healthy.

And now I do feel that I can take on so much more. I'm still tired, but I am actually doing something. Yes. The LDN definitely helped, um, with my sleep pattern initially, um, I started to sleep a little bit better. Um, it's always been erratic for me, and then it would go in, um, small bursts of oversleeping and then no sleep at all.

So it does seem to have balanced out, um, the fatigue. I can't say that it's made a massive difference, but I've taken a lot more on recently. Um, and I've actually sustained that as in, yes, I've been exhausted; it might have knocked me back a few days, but I've actually been able to stick with whatever I was doing.

Um, instead of previous times it would be so overwhelming that I would have had to sort of decline any offer of whatever. Now I'm actually able to face those things, knowing that I will have a little bit more stamina. And, um, I've got the benefit of achieving  something as well. So I do feel there's been an improvement and I think by the time, maybe six months to maybe even towards a year of taking LDN, I think I will see, um, a steady improvement in that area.

Linda Elsegood: Well, I personally improved for 18 months. I carried on improving, but as you were saying to actually be able to do something, to achieve targets and goals and aims that you set yourself. Not only does it make you feel good, um, you know, your, your self-esteem goes up. Uh, your quality of life goes up, and you generally feel so much happier that you've achieved something, even though it makes you tired, you know, going to bed, feeling tired.

Better than going to bed, feeling totally exhausted isn't it? It's a different thing.

Paul: Yeah.

Linda Elsegood: It is, and it's very reassuring to hear you talking like that, you know. Yes. If you overdo it you have to pay the penalty. It's a, it's a balancing act, isn't it, of listening to your body and knowing when you've had enough, but I'm sure you're on the right road, and it's very early days for you.

So it'd be interesting to speak to you maybe next year, this time and see how you've continued getting on. 

Paul: Yeah, I'd love to do that because there are not many things I've had sent in, you know, regards treatments because there hasn't been virtually anything  for people suffering  from chronic fatigue syndrome, ME but we know fibromyalgia now LDN is, is certainly mentioned as a treatment.

So hopefully, you know, this is going to increase to the point where it's a standard treatment, even if it just brings a normalized  immune system, you know, but I also have a friend, a close friend and she's actually started on it, and she's had her thyroid removed, and it's made a difference very quickly for her, you know. Her skin's improved.

Um, She even feels her eyesight improved because the Graves disease  that certainly came after the thyroid toxicity caused terrible things to her eyes, but it's has been a massive change to her. So there's two of us, you know, genuinely see a difference. And there's a non-toxic drug at the level we take it that you feel safe.

Linda Elsegood: Yes. Thank you very much for sharing your story with us Paul 

Paul: Thanks, Linda. I look forward to talking to you next year

 

Any questions or comments you may have, please Contact Us.  I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.