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#518392 03/10/18 04:26 PM
Joined: Feb 2012
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Hi everyone, this is my story of life with (and after) AS. It’s a long story and will be a long post, I hope it is of use to someone out there enduring this horrible disease.

ONSET

My name is Chris, I live in England and am currently 48 years old. Looking back I can see I had some symptoms of AS appearing in my mid 30s – intermittent back and leg pain, sometimes so bad I just had to lie down and groan. I thought it was possibly bad posture from sitting at a computer at work so I tried using an exercise ball as a seat. I also started going to a chiropractor. Neither seemed to have much impact, but the pains were intermittent and seemed to go of their own accord (eventually). So I never felt like I really had anything ‘wrong’ with me.

However, shortly after I turned 40 I began having more persistent problems. The first one I really noticed was in my foot – in the middle of the sole – a condition I now know as plantar fasciitis. I’d been away for a long weekend and walked for miles and miles, and at first I thought I’d just somehow hurt my foot, or worn badly fitting shoes. But the pain didn’t go away, it persisted, and grew. Soon both heels were also affected, especially around the Achilles tendon. I developed a limp and was soon shuffling around. I noticed the pain could move about – sometimes in the heel, sometimes in the mid-foot. My chiropractor gave me exercises and stretches which I did religiously but to no effect. The movement and balance in my feet also became very limited. I found foot pain to be particularly maddening and frustrating, and it persisted for years. I did a lot of research and tried various treatments like soaking my foot in cider vinegar but to very little effect.

After several months I developed further pains throughout my body. Strongest was probably in my SI joints. This was really debilitating, the pain just wouldn’t go. I reasoned to myself that my limp was affecting my posture and causing the pain in my hips. My doctor looked for some kind of structural problem but also took some blood tests and noted I was mildly anaemic. Around this time I also experienced amazingly painful cramps, usually in the legs, and usually when getting into or out of bed. Cramp normally goes pretty swiftly, but often I would just get locked in cramps that would stay locked and I would howl with pain. Eventually I began sleeping downstairs on the sofa as I found keeping my feet elevated helped slightly, and it was closer to the bathroom, which saved time as getting up in the night had become a major operation by this point.

Everything was getting worse. It seemed that the worse it got, the higher the pain reached up though my body, first the legs, then hips, then back and eventually shoulders, neck, and even jaw. Daily activities like making a meal or picking up my youngest son became more and more arduous. I began to dread sneezing, it felt like my ribs would explode. I cycled to work and sometimes would get completely stuck and unable to raise my leg to move the pedal around. Once a helpful stranger put my bike in the back of his car and gave me a lift home when he saw I couldn’t climb on to my bike. Even walking around a supermarket became a daunting task. My balance got worse and worse and I was often afraid of bumping into or even brushing past other people for the pain it would produce. My body seemed to have so little resilience.

DIAGNOSIS

By this time I sensed there was something seriously wrong. The toes on my less-affected foot suddenly swelled up into ‘sausage toes’. Clearly I saw that this wasn’t something simply structural, it wasn’t to do just with posture. On another visit to the doctor I described how the pain could move around my body from day to day. At this point he referred me to a rheumatologist at the hospital. There was a long wait for an appointment but I hoped at least for some kind of diagnosis. The appointment itself was something of a disappointment. The specialist never even saw me – I was examined by his assistant who reported his assessment to the specialist, who said I had an ‘unspecified spondyioarthropathy’ and prescribed me Methotrexate with another appointment in 6 months’ time.


That day was one of the most depressing in my life. Sometimes you come home with something good like some new clothes, and as a kid you might come home with a prize from school, that day I came back home on a rainy day with a scary sounding ‘diagnosis’ and a bag of Methotrexate.

I’ve never liked taking pills and determined I’d try everything else first before taking the Methotrexate (especially after reading about its side effects). However, there didn’t seem to be much else that might help. I trawled the internet for information but, given the rather vague nature of my diagnosis, it was hard to determine the best way to proceed. In the meantime life was hard. It was around Christmastime and that New Years Eve I stayed in when everyone else went out. I was watching TV and experiencing very bad pain and stiffness. I thought I might be more comfortable on the floor and it took me half an hour to position myself there, only to find I was no more comfortable! It took me another half an hour to get back onto the sofa! I did begin taking the painkillers the specialist had also presecibed, Naproxen – that helped to a degree, but they only worked temporarily.

At this point an uncle got me an appointment with his ‘family doctor’ in London. He was very old school and did a very thorough examination of me which lasted about 2 hours. He diagnosed me with AS. However he warned me off Methotrexate due to its side effects, and instead prescribed painkillers and swimming, and warned me that the condition is lifelong, and incurable. Another devastating day. My fruitless searching the internet for a vaguely defined disease turned into a scary trawl around the net discovering frightening facts about ankylosing spondylitis. At least, I had a diagnosis and with every description of symptoms that I found, with every personal account I read, I recognised it more and more, that AS is what I had. At times I thought my life was over.

EXERCISE AND YOGA

I tried swimming as the doctor had advised but although it felt good to be in the water, the real challenge for me was getting to the swimming pool (a short walk away), getting changed and getting in and out of the pool, all of which took so long and was so exhausting that I didn’t maintain it. I also found that various exercise and stretching programmes available online for AS were far too ambitious for me to attempt. I couldn’t relate to an athletic model demonstrating quite advanced stretches when it was a struggle for me to even get out of bed or sit on the floor.

I’ve practiced yoga on and off for about 25 years and was also dismayed at my decreasing ability to achieve even the simplest postures. I found that despite its obvious benefits in terms of flexibility, I was unable to use it to combat the inflammation that was rampant throughout my body. If for example my hips were really tight then I just couldn’t move them enough to produce a ‘stretch’. In the end I just reduced my routine to a few breathing exercises, neck rolls and just whatever small movements I could manage, which was at least better than nothing.

DIET

I began to read about how changes in diet could affect diseases like arthritis. (I discovered KickAS around this point). I read a book called ‘Arthritis: Allergy, Nutrition and the Environment’ by Dr. John Mansfield which, although it didn’t really address AS specifically, pointed to the role of nutrition in relation to arthritis, with many examples of success. I began seeing a kinesiologist once a month who identified foods I should avoid (primarily grains, many starches and all sugars) and supplements I should take. He pointed out that inflammation was my real problem, and also cautioned against Methotrexate. I added to my understanding of what foods could be triggering the AS (and why) through sites like KickAS, and plunged into the world of the low starch diet.

This was not easy. At that point I was a fish-eating vegetarian and also my wife and kids are veggies. It meant preparing and eating virtually separate meals, and giving up most foods I enjoyed, as until that point I ate mostly carbs – lots of pasta, bread, rice, potatoes etc. I was also aware that I would lose a lot of weight on the new diet, and I didn’t have a lot of weight to lose! All this alarmed me but the pain and my debilitated state was so intense that I decided I had to throw myself into it. I was at the point where old people would open doors for me. Sometimes I would be talking to someone and be unable to focus on what they were saying, as my head was swimming with the pain. On one occasion I left a restaurant with my 88 year old dad and he actually helped me walk home!

I did approach the diet gradually in a way. First I got used to a no starch breakfast – bacon, eggs, mushrooms. Once I’d incorporated that I introduced no starch lunches – usually mackerel or meat and some salad and vegetables. Then dinners – chicken and veg, fish and veg, more veg… it took a lot of organisation and determination… but it was possible. For eating out, I found restaurants were generally very helpful in preparing suitable meals, once you let them know what you wanted. In particular I found Italian restaurants and cafes were very adaptable to creating a pleasing chicken and salad or fish and vegetable meal. But I had no idea if, or when the diet might help. I had to wait for at least 3 months before I saw some signs of definite improvement.

They came slowly and almost imperceptibly. The rheumatologist told me to get a blood test every month and he would monitor the results. This was very helpful in tracking progress (or the lack of it). The key markers were ESR and CRP (inflammation markers – these were always elevated) and Haemoglobin (always low). I gradually weaned myself off the Naproxen and only took Ibuprofen sometimes. The pain moderated from high to bearable. But I was always dogged by some pain or other, my feet continued to be swollen and painful, and I never knew when or where another big attack would hit. I had a frozen shoulder for a few months. I also developed iritis several times.

It felt that the diet had made an impact, and although I was pretty strict with it, it hadn’t really stopped the disease. In particular, there were some months when I was really strict with it, but my blood results (and symptoms) would get worse; conversely, there were times when I wasn’t so strict and the blood results and symptoms would actually improve. It wasn’t predictable. There was an area it wasn’t reaching. I decided to take the diet to the next level.

I cut back further and further on various foods to try to identify the ‘culprits’ that might be triggering pain and inflammation… cutting out any foods I considered to be even marginally problematic, for example butternut squash (which appeared quite starchy using iodine), goat cheese, coffee, salt, tomatoes, even carrots and all root vegetables. I began a food diary to try and identify which foods were causing the problems.

Then about 2 years after beginning the diet I visited the Burleigh clinic in London and was presecibed a 2 week exclusion diet, essentially: fish (mostly mackerel and haddock), lamb, quail eggs (very fiddly as they’re so small!), pears, spinach, kale, cucumber, celery, spring water, camomile tea, sunflower oil, salt and pepper and herbs. Following the 2 week period just on those foods, a new ‘safe’ food is reintroduced on every 3rd day, for example, chicken, then olive oil, then mushrooms. While on the diet my symptoms stabilised and pain reduced. But over the following weeks and moths the pain and inflammation crept back in. It seemed that the very act of eating inspired it.

I continued to investigate other possible supplements that might help defeat AS or at least improve the symptoms. Taking probiotics for a couple of months seemed to improve the symptoms generally and it felt like I was onto something. My weight normalised and my bloods improved. Then a friend recommended MSM to me. Excited about the possible benefits, I took it for a month, but my symptoms (and blood results) worsened considerably. I felt like it had been a huge mistake and had set me back a long way. To this day I’m still not entirely sure that MSM was the culprit, but physically I felt far worse than I had done in years and added to this was a sense of weariness and hopelessness that after years of effort I seemed to be going backwards. There had already been many false dawns when I thought I was improving, only to be proved wrong. Still I felt like I had no choice – I had to keep working at finding a solution, as the only alternative was intense pain and immobility. So I summoned more resolve from somewhere.

It was an ongoing battle. Although I stuck rigidly to the diet, the pain went on for months and months, never seeming to end. My bloods went drastically downhill too. I couldn’t walk very far, and if I sat down (very slowly!) on the ground I had to be helped up. I felt truly lost and knew that somewhere I was going wrong. If I was feeling this bad while following the diet, what was the point of it? Was it even working at all? It was all very depressing.

LDN

I read about Low Dose Naltrexone on the kickas site and was quite excited about its possible benefits, and eventually was able to get a prescription for it. I took it for 6 months but with no discernible improvement from it during that time.

FASTING

Then I had a brief illness when I didn’t eat for 3 days due to feeling sick in my stomach. The effect of this involuntary ‘fast’ on my symptoms was so refreshing that I decided to investigate the area of fasting further. I read all I could about the subject, prepared as thoroughly as I could and plunged into a 7 day water-only fast. I booked a few days off work in order to really concentrate on it. I didn’t find it too difficult. Of course I missed eating, but it seemed more of a mental craving than a physical one. I hated losing even more weight though, about 10 pounds altogether. I now weighed about 145lbs and felt extremely skinny.

Once again my symptoms diminished while fasting but slowly returned when I resumed eating. I still felt off course, still making such little progress. In terms of blood results I was having my worst year so far despite all my efforts.

I continued reading books and gathering more information online. Increasingly I aimed not just to avoid the foods that might be triggering the AS symptoms and inflammation, but also to ‘heal the gut’ – the theory being that if no unwanted bacteria are able to escape from your gut into your bloodstream, your autoimmune response will not be triggered. I read that a dietician in the US names VE Irons had cured himself of AS through diet, supplements and colonic irrigation, and decided I had to try this approach. I found some very useful and inspiring reading around this subject, including 2 books by Daniel Reid, ‘The Tao of Health, Sex and Longevity’ and ‘The Tao of Detox’.

About a year after my first fast I repeated the 7 day fast, this time using twice daily colonic irrigation (at home). This slightly harrowing and at times eye watering procedure required careful planning and preparation, and another few days off work. Again I lost a load of weight I didn’t have to lose, dropping at one point to 135lbs. On the plus side I did feel better for the fast, it felt as though my whole system had been completely cleaned out, and I found that my usual cravings for certain foods, especially carbs, had more or less gone.

INSPIRATIONAL POSTS AND THE GAPS DIET

More and more I became interested in the (very rare) online posts where someone claimed to have fully recovered from AS. Whenever I came across such a post I thought ‘I’m going to do what they have done’. I found this post by AndyJ on kickas to be particularly inspiring:

https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=511233#Post511233

He recommends fasting as a quick way to heal the gut. I began to implement as many of his recommendations as I could. Many of them were simple changes such as replacing table salt with Celtic sea salt, drinking lots of water, eating lots of healthy fats, and also taking probiotics regularly. All these I felt were very beneficial for gut health and health in general, and I haven’t stopped yet!

It wasn’t long before this direction of research led me to the GAPS diet. I found some positive reports from people with AS who had followed this diet. It’s not so different from the no-starch no-sugar diet I was already following, but with an added emphasis on ‘live’ foods such as sauerkraut to help re-establish a healthy gut environment. It also involves taking supplements such as fish oil and cod liver oil. Having read about the benefits of apple cider vinegar I included a daily dose of that as well. The GAPS diet begins as something of an exclusion diet as you begin with a very few foods and gradually build up to encompass more.

By following GAPS rigorously and the other changes mentioned above my symptoms gradually improved. In the following 6 months I gained weight, my bloods improved, and I regained some flexibility. Most importantly the pain lessened to no more than an irritation. It was hard work but great to get some positive results.

AMALGAM FILLINGS

X’s post also mentions the potential danger of amalgam fillings, especially in relation to the condition of ‘leaky gut’. It was something I hadn’t considered before. Further reading brought up an instance of a woman who had been bedridden for years through what turned out to be candida overgrowth. She was able to return to full health following the removal of her amalgam fillings. Talking to one of my brothers I found he’d had his removed some years before, and could recommend a good dentist to safely perform the removal. I decided to go ahead and get mine removed. If you choose to do the same, I would recommend doing your research to identify a specialist dentist to do the removal safely, as mercury can easily leak out into the air (or your mouth) during removal. I find it difficult to assess how much of an impact the removal of the amalgams has made to my health – but the fact is, they were removed a little over a year ago, and I haven’t had any pain (or AS symptoms) in over 6 months. Pricey, but in my opinion, worth it.

EMOTIONAL ‘STRESS’

I’d often sensed there may have been an emotional or mental component to AS. A tai chi teacher I knew had likened it to a ‘civil war’ within the body – that there must be some aspect of myself that I didn’t like or couldn’t accept. In order to address this aspect, or at least, find some healing of some sort, I downloaded and often used a healing audiobook – the particular one I used was Louise Hay’s ‘Self-Healing: Creating Your Health’. Over several years I’ve found it extremely relaxing and helpful to at least improve your mindset with regard to your illness. However it’s hard to assess its full impact.

I seemed to be heading in a good direction, but AS wasn’t quite done with me yet – or perhaps I wasn’t done with it. Pain slowly crept back in, despite very few transgressions of the GAPS diet (one key transgression being once again baking my own almond bread, starch free but not dairy free). I’d get a sudden strong burst of pain in my shoulders, which might then switch (literally overnight) into my ankle, or a general achiness throughout my body. Also I noticed my leg muscles would twitch involuntarily, not painfully, but consistently, and this I knew to be an indication of AS activity. My blood tests reflected the change with some bad results, and I began losing weight. To cap it all I got another bout of iritis.

I noticed that my shoulder pain would often be really bad by the end of the day, but in the morning after a good sleep it would miraculously be gone. Then it might appear again during the day, and go again after a sleep. I began to wonder: what could be so healing about sleep? And why, if the pain was purely inflammation based, wasn’t it constant? What variable was controlling it? There was still a level of this ailment I wasn’t reaching. As usual, I tried to link the pain to some transgression in the diet, to perhaps eating a piece of cheese or taking a sip of beer. But there really wasn’t much left to blame it on in terms of diet at this point.

Around this time I found some testimonials online which had a profound effect on me. I had always looked out for people who seemed to have recovered fully from AS, but rarely found them. Now I found a whole cluster of people claiming to have overcome chronic pain conditions, AS in particular. These testimonials were on the site ralphitness.com For the first time, I truly believed that AS was not ‘incurable’, or at least that you could fully recover from it – it was possible. This had an immensely powerful effect on my outlook – to see and listen to people who had fully recovered. I longed to be able to tell that story myself. Finally I can tell that story, and that is what this post is.

The ralphitness site draws quite strongly on the work of Dr. John Sarno, who wrote several books dealing with back pain and the psychological conditions that sometimes lay behind it. The previous year I had read one of his books, ‘The Divided Mind’ after a family friend seemed to have a near-miraculous recovery from chronic pain simply by reading it! I thought it must be worth a read, so I gave it a go. Dr Sarno identifies many cases of back pain which are in fact a condition he calls ‘TMS’ and which can respond not to physical treatment but psychological understanding. His idea is that repressed emotions can lie behind physical pain, and with the release, or at least acknowledgement of the emotions, the release from pain happens almost automatically. I was very interested in this concept, even to the point that I had begun a journal to try and understand what my emotional issues might be, but I had never really thought that AS could be the same as the TMS he described. I was much too convinced that AS had a purely ‘physical’ cause and that therefore there must be a ‘physical’ cure – hence returning again and again to tweak my diet, and blaming any pain on what I believed was a transgression when eating. These testimonials said otherwise.

I bought a copy of another of Sarno’s books, ‘Healing Back Pain’ and devoured the ideas in it in a new light, applying them to my own pain irrespective of what its name might be. I now looked for emotional causes of the pain rather than purely physical ones. I began to see instances of pain as manifestations of ‘stress’, meaning unprocessed emotions and frustration. This seemed to explain why my pain would often be gone in the morning – sleep had given me a chance to ‘process’ the stress, and so the pain diminished. As stress built up again throughout the day, the pain returned.

I think most people are familiar with the concept that stress can make you ill. It’s a common understanding. I looked back at events in my life around the times when I became ill. My early symptoms, in my mid 30s, coincided with juggling a sometimes madly busy job with very young kids, plus the change in identity and relationship as me and my wife became parents, all of which had a huge and not always beneficial impact on our lives. I had been trying always to remain calm amidst hectic circumstances. Then about 2 months prior to my more pronounced symptoms (when my feet began hurting) I underwent a very stressful restructuring at work, the outcome of which I felt was very unfair. Perhaps I should have walked out, but having a mortgage and young kids I felt I couldn’t, so stayed and got on with it. This combined with some other stressful events (or rather not fully processing the emotions relating to these events) I believe could have triggered the onset of serious AS symptoms; and the fact that the situation was not resolved could have led to the symptoms continuing too.

Finding an emotional level to the ailment is not to say that using the diet (and many other approaches) to heal myself was a waste of time. But I think the emotional/’stress’ interpretation was the missing piece of the puzzle, and it also explained why, for instance, my symptoms and blood results worsened when I was strictly sticking to my diet – these were probably times of increased stress, and it was the stress that was exacerbating my symptoms. For example, we had moved house during the this time period and that proved to be an immensely stressful and long drawn out operation, involving a lot of disruption.

When I use the term ‘emotional stress’ I’m not simply referring to times when, for example, you have too much to do in too short a time. I’m referring more to unresolved emotional issues and circumstances in your life that may be causing you angst or frustration, even on a subconscious level. You may not even be aware you have these stresses! For example some people are in unhealthy or even abusive relationships but because they are so used to being in them they believe it’s normal, and all that time they are ‘consuming’ a ‘diet’ of very unhealthy, negative emotion from their partners, and perhaps it’s impacting on their own view of themselves as well. I’ve come to see emotions as an energy that you constantly share with others. They can of course be positive but can also be negative and you can even be a ‘sponge’ for someone else’s ‘stress’ – ie. their frustration or other emotion that they can’t process.

Whatever your situation I would recommend looking at your life and just observe honestly how you truly feel about different areas of your life and the important relationships in it. What are your areas of regret or unfulfillment? What are the areas of dissatisfaction and frustration, or anger? Be as honest as possible; if you ask yourself the question, somewhere inside you will know the answer. In my experience, to make a change on this level, it isn’t even necessary to fully ‘resolve’ the external situation or issue. For instance, you may not need to change your job or partner. What is important is to acknowledge your true feelings, and decide what action (if any) is appropriate. Often this will mean taking a new or different attitude towards someone or something in your life, because you realise your old attitude to be unhealthy. In my case I think I always tried to remain calm and positive when inside I was experiencing a lot of frustration and struggle.

One of the key moments in understanding this emotional connection to pain, and in fact in my whole healing journey, came about 7 months ago when me and my family were driving back from holiday. We’d all had a lovely holiday and felt quite relaxed, but the journey became very stressful due to road closures and travel disruption. I was navigating and the situation became quite difficult (I know it doesn’t sound too bad but believe me, there was some driving-related panic going on!) between me and my wife in the rather chlaustrophobic environment of the car. Typically I tried to remain calm and just navigate the best I could as I thought biting back is not going to help anything. But inwardly I felt I was absorbing a lot of angst from the situation, a lot of blame that I didn’t feel was justified. I wanted to scream back, or out loud. But I kept, outwardly, calm. We made it home OK but as I got out of the car, and for the rest of that evening, I had the most immense pain in my shoulders I have ever experienced. I could barely hold my head upright. Once again the pain was so strong I couldn’t focus on anything else. Then the following day the realisation hit me like a spade on the back of the head – the pain, clearly, was not from something I’d eaten (I’d been virtually pain free for weeks at that point). It wasn’t from being stuck in a car. It was from the emotional conflict – the ‘stress’ that I’d experienced and been unable to release or ‘process’. It had surfaced in my shoulders as pain and was so strong I could not ignore it. With this understanding, everything seemed to fall into place. I have not felt any pain whatsoever since.

This is not to say that I haven’t been stressed since. But I now have an understanding of the importance of acknowledging your feelings, your actual feelings, what is really going on, rather than ignoring them or trying to suppress them. A fascinating book and approach relating to dealing with (and releasing) emotional ‘blocks’ is ‘The Emotion Code’ by Bradly Nelson. I won’t go into that here but would just say it’s an amazing resource if you are interested in this approach. I’d just say judge it for yourself.

I felt, in fact I knew, I had really hit upon something at this point. I was no longer bothered by pain. Gradually, cautiously, I reintroduced foods I had previously avoided. Importantly, perhaps crucially, I no longer believed I was ill. It felt amazing, refreshing. Over the coming months my blood results improved and then normalised. I added more and more foods to my safe list until now I am eating whatever I want, with no adverse effects. I couldn’t have asked for much more. My flexibility has improved too – not to pre-AS levels, but I no longer feel confined by my own body. I still have a little residual swelling around my ankles, but it feels quite benign. Maybe it will go in time.

TODAY

Today and for months now I have felt free of AS. It’s a wonderfully liberating feeling, or perhaps liberated is more accurate. There are some health routines I still follow however – I feel they are good for health in general. I daily take the following supplements: probiotics (3 times a day), cod liver oil, fish oil, apple cider vinegar. A fantastic resource for all things health-related (and including many inspiring approaches to healing arthritis, diabetes and other ailments) is healthfully.net (a health blog). From reading this, I now make sure I drink 2-3 litres of water a day, with the juice of 1 lemon squeezed into one of the litres, as this alkalises your whole system very effectively. Also since reading healthfully I spray on magnesium oil every day (I believe this helps with the muscle twitches/cramps I used to experience), and I take further supplements of iodine and vitamin D and K (together). I am also very pleased my doctor prescribed me a 3 monthly vitamin B12 injection, as this vitamin is very often deficient in people with autoimmune conditions.

Apart from that I eat whatever I like, although I tend to choose healthier options over junk food and maintain a lot of the eating habits I got used to over the past 5 years of following the various diets, as I find them more fulfilling and in many cases tastier. I have no trouble walking or moving and can enjoy playing tennis again with my kids.

In a couple of months I will go for my annual visit to the rheumatologist at the hospital. I don’t think there’ll be any need for me to go again after that. In fact, the main reason I’m going this time is that I want to be able to tell him I feel I have conquered AS pretty much completely, without drugs. I imagine if I was him I’d want to know how this could be done. But when I mention any kind of diet or alternative treatment, he swicthes off. He’s not interested. And I can’t blame him – he’s just doing his job as he’s been instructed; if someone presents with certain symptoms, he should prescribe the appropriate drugs. It’s little wonder he has no faith in diets (or even wackier stuff) – after all, there’s little research into the effects of a diet, as there is no pill to be produced from it, and thus no profit for the drug companies.

When battling AS I’d say it’s important to keep an open mind and to try to hit it from every angle, and at every level, that you can. I felt like it was a massive time of trial and error, and no one was more surprised than me to find out that it seemed to have at least a component to it that is ‘non-physical’ – after all, what could be more clearly ‘physical’ than an aching back or swollen wrist? I truly hope that something in my story may be of help to someone out there. Thanks for reading this. May everyone be free of this disease.

Face1000 #518395 03/11/18 07:53 AM
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Thank you so much! For your time and honesty. I believe that this is "the way". Have you read The complete dictionary of diseas" by Jaques Martel? I have AS-HLAB27 positive (I think it appears after a very strong emmotional moment in my life). Now I know any disease can be cure.Regards, C.
p.s. I'm not a native english speaker.

Face1000 #518397 03/11/18 10:11 AM
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DCR, I don't think I have had enough distress in my life yet because I am not HLA-B27+ yet!!

But truthfully, a couple of my hippy friend told me that I could cure myself if I just "let go", or "stop thinking."


HLA-B27 neg, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Reverse blockage in a SCUBA accident
2013.08:Scratched by a sick cat
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal
Face1000 #518408 03/13/18 02:17 AM
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Thanks for the post.

So you ultimately thought the psychological aspect was necessary to get completely pain free? What do you attribute that to, considering AS is not psychosomatic.

Face1000 #518412 03/13/18 11:36 AM
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DCR – Glad you found this post helpful. I haven’t read the book you recommend but it looks good and I shall get a copy, thanks.

Exacta – Yes I found that a psychological approach was what finally got me completely pain free. This was a surprise to me, as I still don’t regard AS as psychosomatic either. However I do believe AS (and maybe many other ailments) do have a psychological aspect to them or ‘equivalent’ in the mind, and in my case that needed to be addressed. The body and mind are not separate entities and what is going on in one is reflected in the other. Thus ‘stress’ is essentially a mental or emotional reaction, but without doubt it causes a physical response, whether that be increased heartbeat, sweating or even a ‘leaky gut’. Therefore I found both approaches were necessary to heal – the diet, supplements etc on the physical level and some soul searching and self study on the mental level to defuse the issues that were at least contributing to my symptoms.

Face1000 #518470 03/19/18 05:38 PM
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Thanks for the story. I appreciate the time and effort to tell the details so intricately. I am kind of half-way through the story, have been recommended to have my amalgams removed by a naturopath. Weighing up the choice. I reckon my problems have an emotional element too, particularly related to anxiety/stress/fear. working on that too. No results for me from 6 months NSD. Also considering Dragonslayer's antibiotic course, although this is a great contrast to the Gaps diet that i also have been doing (loads of probioitics). I maintain hope, and will work towards having an ending to my story like yours, by hook or by crook!
thanks again, Patch

Face1000 #518476 03/20/18 02:17 PM
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Hi Patch, thanks for your message. My understanding of the dangers of amalgam filling is that they can poison your system 24/7 by leaking mercury, which (amongst other things) can eat through tissue and thus create the leaky gut that can be the source of many health conditions. Therefore I’d definetly recommend getting them taken out and replaced (also be careful about what they are replaced with – some plastics can also be problematic!). Get it done by a specialist, probably quite expensive but worth it I think. Yes keep an open mind on the emotional side. Sorry to hear you have had no results from the NSD. I also found it a frustrating experience, continual trial and error, and was one on diet or another for over 5 years. Congratulations on your obvious determination, I think it is invaluable on a journey like this. Good luck and I look forward to reading your success story, however long it may take!

Face1000 #518479 03/21/18 11:39 AM
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Amalgam fillings are no more dangerous than other fillings. It's just a story put about by the dental profession to get us to spend even more money.

Don't hold your breath while waiting for a NSD diet to work. There is no diet that works as a treatment for A.S.

I also want to congratulate you on your determination. It is something very handy to have when suffering from any chronic illness.

#518481 03/21/18 01:04 PM
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Hello, Frederick:

Where to begin?

The ADA did a comprehensive study to be able to tell the lie You just repeated, so WHY would they work against themselves?

I am very happy that You have been so successful in Your own treatments; perhaps You will share what has worked so well for You (IN THE APPROPRIATE FORUM) instead of running down diet. In this (NSD) board Your comments are opportunistically desultory, rude, churlish, and ignorant. We have a separate board for those patients not interested in diet and You are welcome to post Your opinions there, but NOT HERE. After You EDUCATE YOURSELF about molecular mimicry and can then formulate a cogent opposition, we would be happy to answer Your concerns. Until then, You are VERY unwelcome here.

HEALTH,
John

Face1000 #518483 03/21/18 02:17 PM
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Frederick, I’m thinking that ‘There is no diet that works as a treatment for A.S.’ might be ‘just a story put about by the medical profession to get us to spend even more money’ on their drugs!

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