Video interview and transcript about my experience with Low Dose Naltrexone (LDN) for Ankylosing Spondylitis

I thought I share my little interview on my early LDN experience from summer 2012. The interview had been lost and when I couldn’t find it on Youtube I chased Linda Elsegood (from LDN research trust) who then found it and put it up.

It was strange to listen to myself being so exited and amazed by the effect LDN had on my condition Ankylosing Spondylitis, which, for those who don’t know is a form of inflammatory arthritis which usually affects the spine and SI joints but can also affect other joints.

My friend has transcribed the interview so if you don’t have time to watch/ listen to it you can have a quick scan.

What I would like other AS patients to take away from this is that is has helped me tremendously without ill effects. I recommend that if you are stuck you look into the option of trying it for yourself.

LDN allows me to live a full on life, free of pain 95-99% of the time. I can teach my group fitness classes with full participation, I can sleep well and wake nearly as a normal person, it takes me less than 20 min to fully get going. My posture is great and I don’t get ill at all.

I do have some other health promoting lifestyle habits that I know are doing their part, but everything together just works for me.

You might think well it could be a placebo effect. I can confirm that it definitely is not.

In 2012 October I had picked up a stomach bug at the gym and after a couple of days of being unwell I noticed that my back was not that great. I realised that I had not been absorbing my medication so it then obviously could not make me better.

The 2nd time this happened at Easter 2013 when I got a really nasty case of food poisoning at a restaurant in Germany. It took me a week to get rid of it and to start absorbing my LDN again. After these two occasions where I did not absorb my mediation and the pain and stiffness worsened quickly I knew it was really the medication working for me.

Beforehand I did think, maybe I just got better by accident. It definitely was not an accident because I have done a lot of research and tried a lot of different things before everything came together giving me the freedom of a pretty much normal life.

There is a possible side effect of vivid dreams, for me personally it was great to actually sleep with dreams again, I used to dream most nights before I got really unwell many many years ago. I love dreams and I love being able to get a full night of restful sleep, it make the world of difference.

At the end of this post I share a condensed list of the things I do to keep well as well as a list of LDN links for you to do some research.

If you would like to stay in touch and stay informed about any new info I put out on AS please subscribe to my AS specific news letter.

You also get access to the Shibashi intro video you can see that it is easy to do. Maybe you can pick your favourite move and do several repetition to some tranquil music. 

Keep me informed

http://www.youtube.com/watch?v=KoQQ_rGM4YQ&feature=youtu.be

Transcript of Linda from LDN Research Trust interviewing Marie about the experience with Low Dose Naltrexone for Ankylosing Spondylitis.

Linda: I’d like to introduce Marie from England, who is originally from Germany.  Marie takes LDN for ankylosing spondylitis.  Good morning Marie.

Good morning. How are you?

Linda: I’m fine thank you.  Could you tell me when you first started to experience symptoms?

Um, I think it was when I was about 17 ½ years old, so a little while back, I’m now 30 years old (2012). Basically I had an accident and I fell with my lower back on a bench when I was doing artistic roller skating.

I was too proud to actually get it looked at and I became quite stiff and it was hurting. From then on I kept having problems in that area. I knew I could possibly have ankylosing spondylitis, because my dad has it too. I was tested when I was about 11 for the genetic defect and yes I do have it. My sisters don’t, they are very lucky. When I was younger they couldn’t find anything on my x-rays so they said I haven’t got AS. Over the years I just got worse and kept having problems.

I am very active, I exercise a lot (too much at that time).I don’t want to stop; I have always been exercising through the pain, now I know why the pain stays/ doesn’t go away, it’s because it is ankylosing spondylitis. Just like I have been suspecting for a very long time.

Essentially what happened was I told the GP over here (in the UK) that think it is ankylosing spondylitis but they did not agree. The GPs said that I had just been exercising too much.

It was a very frustrating time because it has taken over 10 years to get a diagnosis. I did get my diagnosis this year (2012), on 23^rd June. For me it was just about making it official, I was relieved just that they actually could accept that I was not making the AS pain up.

Really for my family and me it didn’t make a difference because we knew what we were dealing with and we have done everything we possibly could to make it better with what we had available to us.

I have been working on diet quite a bit because obviously it is easy to do, as it doesn’t involve any doctors. I have been reading the book from Carol Sinclair and I found that very helpful. I tried to implement all the tips that she had in there and it did make a difference but it didn’t fix it (AS).

So at the time when I got my diagnosis, – I was quite bad at that time, I was having severe problems, I was stooped over, curled up and it would take me all day to get going and straighten up in some form.

As I was still teaching fitness classes, people used to look at me and think ‘you shouldn’t be here’ and I said ‘I don’t want to let you down’. I would verbally teach my classes and because they are very good they knew what they had to do so I could keep doing my job.

When it was so bad and I had my diagnosis I had another inspiration – I wanted to finally see if I could find some natural way of healing this (AS).

I came across DLPA as an option, it is a supplement and it is supposed to enhance endorphins and make them last longer, the ones that you have got naturally. I tried the supplement for a while; it didn’t make that much difference. Then I came across LDN because I kept digging deeper, trying to find something natural that doesn’t have side effects because I don’t do well on any medication. I was so excited when I saw LDN, it just all made sense, I liked the idea that it didn’t have any side effects.

Linda: Where do you get your pain, Marie?

The pain is mainly in my lower back around my sacrum and L4 and L5. I’m actually very stiff down there; I don’t think I’ve got much mobility in the area.

I did have thoracic spine problems as well but I’m not sure whether they were already ankylosing spondylitis or just muscle spasms because they usually go hand in hand and you can’t tell until you have stiffened up whether it was connective tissue forming bone or just problems in the muscle.

I know trigger my problems through exercise, not on purpose of course. It is quite debilitating when the pain affects my fitness job that I really like.

I like meeting and helping people. I find that when I teach exercise classes I am able to help people stay safe and look after their bodies better because I understand what it is like to be in pain.

It was so exciting to find LDN. When I found it, it took me about 2, 3 weeks to make my mind up to actually try to get the prescription because I was scared that it might be a false hope.

When it finally arrived it was so exciting. I took it on the Thursday night, and that is after having taught 3 classes, which usually makes me very bad for Fridays. On Friday I teach 4 classes, which I usually dread. When I woke up in the morning I felt like I was never ill. I was straight (my posture), and the day before I was curled up, it was amazing!

I could feel there was something there, it was like the pain through a veil, a very thick veil, very numb, like there is a little bit there but not very painful. I mean if you have 100% pain or 5% that makes a lot of difference.

I managed to exercise through Friday and I couldn’t believe it. I kept bouncing with excitement and then I thought maybe it was just a blip that I felt better. On Saturday I continued to feel good and ever since then I have just been well.

Everyday I think – oh my god I should have known this before I got stiff in the lower back because I would have been able to save my joints there.

Linda: That is amazing.  Did you own doctor prescribe it for you or did you  have to get it privately?

No, he didn’t!  He wasn’t very helpful. I had a telephone consultation with him about it and I said look, I’ve found LDN and I want to do this. I want to give it a try. He (the GP) said no, the primary care trust does not support this drug, I can’t prescribe it. Kind of ‘forget about it!’, so I was very upset. (I felt unsupported)

Then I found PrescribeMe – I was excited. I thought it’s ok I’ll pay for it myself because all the treatments that I do for my condition I pay for myself. The NHS funds none of them.

For example I had regular massages for over a year, which helped lot getting the tissue loosened up and getting mobility back, helping to keep me functional and as pain free as possible. I have also started taking acupuncture sessions which I think are helping quite well overall, just getting the system healed.

Linda: Has your doctor seen you since you have been on LDN?

No I haven’t seen him. I kind of feel, it’s my secret. It sounds a bit strange but I don’t want anyone spoiling it for me.

I am due to see my rheumatologist in October, I think I might mention it then. But I am not very hopeful, she wasn’t very supportive at all when I said “look I don’t want to go on anti-TNF”- I don’t agree with the side effects, I don’t want to give it a try. Anti-TNF is not even proven to work, I’ve done my research. I am a very informed patient, which doctors do not really like but it’s my body and I need to do what’s best for my body. I research everything very thoroughly and weigh up the pros and cons trying to find reasons for why something should be working. If I agree I give it a try. That’s how I came to try LDN.

Linda: So if you had to rate your quality of life on a score of 1 to 10 before LDN, 10 being the best, what would it have been? 

Um, 2?  It was very bad. I couldn’t concentrate anymore, couldn’t get any work done.

I am very flexible with how I work because I am a freelance fitness instructor, a freelance designer, and I run a webshop so I can work around my problem but I still couldn’t get a lot done.

I was severely ill since early May this year, so over 8 weeks. I just wouldn’t get any better, the pain shifted from one side to the other and I was very stooped and I thought I would never get straight again. It was not good (it affected every aspect of my life and my relationship).

Now I am bouncing, I am straight, I look like a normal person.

You can’t tell I have got something wrong unless I have to demonstrate my spine flexion/ extension!

Linda: So what would you say your quality of life is now, on that score of 1 to 10?

It is probably 9.

Linda: Really?

It is pretty much ok. I mean, I still know there is a problem there because every now and then when I exercise too much it feels a little bit sore but it doesn’t stay and it’s not debilitating like it used to be.

It’s amazing, it’s like a miracle, I just can’t believe it…

Linda: So what would you say to other people with ankylosing spondylitis if they were thinking of trying it?

Oh, do try it!  Go for it because you have got nothing to lose.

It doesn’t have any side effects, many people report really good results and it’s a chance to take. If it doesn’t work at least you gave it a try.

I’ve actually persuaded my father to give it a try. It took me quite a while of persuading because he’s had AS so long he’s used to the pain and the problems and I think he might have given up.

He’s been on it for 2 weeks or so – he feels a little better. It has not worked as instantly for him like it did for me, (which was quite fast). I think the reason for it is that he doesn’t incorporate a clean diet (starch and gluten free), which is very relevant to ankylosing spondylitis since the gut is very involved in causing the inflammation. I’m hoping that he too is going to get better soon – it would be great. Better late than never I guess.

Linda: Yes! Well what an inspirational story for others.  Thank you very much for sharing.

Thank you for having me. – Interview END

A few resources and a small list of what I have done to make myself well

In my experience it takes a variety of approaches to make AS go into remission:

• Diet, organic, gluten and sugar free
• smart targeted supplementation
• gut healing/ parasite elimination protocol
• stress management, me time, tai chi shibashi, meditation, resting
• exercising smart, personalised mobility and flexibility training
• positive thinking and gratitude practice, programming the mind for happiness
• in my case the support of the LDN (Low Dose Naltrexone)

If you would like to stay in touch and stay informed about any new info I put out on AS please subscribe to my AS specific news letter.

You also get access to the Shibashi intro video you can see that it is easy to do. Maybe you can pick your favourite move and do several repetition to some tranquil music. 

Keep me informed

LDN information Fact sheet list from Dickson Chemist

For more information on the treatment of MS and other autoimmune diseases with LDN, contact the LDN Research trust:

http://www.ldnresearchtrust.org

For more information, or to join the “cause” – to have LDN formally recognised by the NHS, visit:

http://www.ldnnow.co.uk

For more historical information, and potential uses of LDN, visit:

http://www.lowdosenaltrexone.org

LDNscience™ is a public information project of the MedInsight Research Institute. They offer information on Low Dose Naltrexone, OGF and related therapies for physician, scientist and patient.

http://ldnscience.org/

I hope you found this interview useful.

You can also read Jay’s story in the Happy Clients section, he was able to lose his cane when he started taking LDN and adjusted his diet.

When I expanded my knowledge to help myself by becoming a holistic personal trainer I started coaching clients that suffer with AS or chronic back pain throughout West Yorkshire as well as remotely. If you are tired of being in pain and want to take a stab at getting better naturally, I am here to help.

If you are local to Leeds, why not come to one of my mind & body classes, they are held at the Heart Centre in Headingley on Mondays 19:15 or Friday at 10am.

Feel free to leave any questions in the comments below or email me.