This project is intended to expand my "AS Online Guide," it will be a booklet, free to everyone who wants a copy and available HERE of course. The reason I have chosen to ask for help from our members is that I don't have the discipline to actually finish the project! This forum might force me to gather up my writings and consolidate what I know, relating my experiences, while sensitive to the mode of expression for a topic which should be very simple, but can very rapidly become complicated.PREFACE:
My intention is to present my own opinions, based upon certain key scientific papers and anecdotal observations. Each chapter should begin with the most urgent information, followed by the more complex explanations and technical jargon and references.
Over the next couple of months I will add to this. If this is a project any of our members would like to participate in, I appreciate very much Your help; if you disagree with me, this is NOT the place: CONSTRUCTIVE CRITICISM is welcome.
I ask that the reader bear with me, for my understanding about ankylosing spondylitis is from personal experiences that were shaped by an interest in the mechanism presented by scientific literature in addition to spurious anecdotal stories that include published writings not totally of a scientific nature.
However, I will take the time now to discuss something that I don't really want to dwell upon too much and this is the spiritual nature of my personal disease and transformation. What kind of God will create a creature to suffer? I can make this easy and cut right to the chase but I contemplated suicide because of the pain and because no doctor could diagnose me in the early days and even if they had, they could not have helped me! So there is a psychological dynamic to everyone who suffers and I don't even need to get spiritual about this, but I demanded all the answers and I got them. In BOOK 2 I will discuss this in depth, but suffice for now some basic guidelines without specific explanation; without the sermon!
THE GOLDEN RULE is the best place to start but it should be understood better: Do unto others as you would have them do unto you of course applies to fellow humans, but it also applies to all fellow creatures. Have empathy, patience, be kind and just. I regret much from my past with this disease, which caused me to be in a constant agitated bad temperament; I should have been a better person and better human. My disease was the result of a karma which pursued me for a millennium! Had I not learned the truth, I would have repeated mistakes and created more negative karma.
So in psychological terms, we each have a conscience that works upon our thoughts and in some ways can manifest issues in the physical. We know just how real psychosomatic illness can seem. I heard Divine's (Harris Glenn Milstead) interview where he had filmed a certain scene and had ingested something very unclean. He pretended to be a little boy's mother calling poison control and was told to watch for ringworm. Sure enough, he developed ringworm! Just from the power of suggestion.
Ankylosing Spondylitis is certainly NOT psychosomatic, but feeling those familiar pains over and over again causes us to develop patterns that are hard to break; we expect to hurt when we bend down to pick up our keys. I put together a terrible string of curse words whenever I had to bend a certain way or sneeze! Even after all the pains were gone, I caught myself complaining upon anticipation of such a task--it was many years after all symptoms of AS had left me that I began to welcome the fact for being able to do such motions without pain!
I worked many years as an engineer and the goal of this discipline is to reduce scientific principles into practice and to make what is complex into something simple. So I can explain the disease AS on many different levels, that will begin with what to do to get rid of the disease followed by the explanations why with certain references, and then expounded upon into very tedious detail. The working hypothesis is that ankylosing spondylitis is caused by the germ Klebsiella pneumoniae
through the mechanism called molecular mimicry
. In the most simple terms, our immune system correctly identifies the presence of this germ, but it creates a type of antibody that not only attacks the germ, but also attacks our own tissues with similar structures. The real culprit is an immunoglobulin called IgA-Kp that proliferates within lymph. It is nearly impossible to comprehend that just one single mechanism is responsible for such a diverse variety of symptoms, but molecular mimicry explains everything!
CHAPTER ONE: The Kick AS website
Certainly I had the answer staring down from my bookshelf many years before I accepted it; too many years before I heard it from the most sound trusted source! Genius Giraud Campbell through careful observation came to his conclusion in the late 1960s and it is codified in his seminal work horribly titled: A Doctor's PROVEN New Home Cure for Arthritis. Yes, this was my first exposure to the No Starch Diet and I railed against the advice so much that I never actually tried it; I was trying to be a vegetarian. During my stay in India, perhaps it was best that I had not tried to stick with such a diet, however, I got myself into serious trouble with "Delhi belly," that laid me out for many weeks! My friends finally brought me antibiotics and perhaps these included ciprofloxacin that helped clear up the colitis, but also I was AS-free for a few days and it was very noticeable!
Of course getting back to eating starches was required to stay consistent with my vegetarian diet so I not only was back in the club, but had a very severe flare that could not be touched by NSAIDs! So I fasted a week to get it turned around. I had learned about fasting many years earlier when I had a strange presentation of pleurisy which pinched off my trachea and prevented me, eventually, from even drinking water. Dehydrated, I was taken to the hospital and upon release I noticed the terrible sciatica, bursitis, and core pain was not tormenting me!
I reasoned correctly that it was fasting which put me into a state of remission, but I could not reason which food was the culprit, so I took the vegetarian approach which seemed to help but I misled myself. A meat eater consumes the hamburger with fries, not expecting that the starches could be worse than the meat: It was the bun and fried starch that were the culprits all along! I never suspected the reason I felt better initially by going vegetarian, had more to do with the types of starches and combinations I was avoiding than the elimination of the meat.
By the time I returned from India, I was able to get online and find information about AS and I joined "Brian's AS Web" and had interesting discussions there but one fellow had the answer all along. I always thought that only if I could meet someone who had OVERCOME their AS and knew exactly why, I could also overcome this disease. I had already met several people with AS but they were just doing what I was doing! Now, through "Brian's AS Web," I finally met that person: George McCaffery. He gave me Professor Alan Ebringer's technical papers and later sponsored two seminars that although not widely attended were substantial in our understanding and successful approach.
Eventually, Brian's AS Web needed updating and we met with him at his home in Las Vegas to see if he would be receptive to starting another website. He was not interested in direct participation, but he welcomed the concept. Pete Younghusband, Tony Browneller, and several of us with considerable financial help from George McCaffery started www.kickas.org
The primary purpose of this site was to have fellow patients interact with each other to help with their individual AS treatments but also to publish Professor Ebringer's papers and support the dietary approach, which many of us had proven to ourselves by then. There was considerable resistance to this treatment on the main forum and we had some battles, so the NSD split off into its own forum.
CHAPTER TWO: Experiences with NSAIDs
Statistics can be a powerful analytical tool, albeit Mark Twain quipped that "There are lies, damn lies...and statistics!" I have used statistical process control (SPC) to great advantage in my working life and although this is a great tool, there must be some solid construct behind the mechanism being analyzed or discovered, without introducing bias of course!
The scientific method reduces to a rather simple process: 1) Stimulus, 2) Response; and 3) Observation from which a 4) Conclusion can be derived.
Once I began NSAIDs during a time when I was unable to walk, I developed what I call a "constellation of symptoms," which were new; I did not experience these prior to taking these drugs.
Perhaps I began developing symptoms in the year 1971: Sciatica, hip bursitis, coccydynia, costochondritis, asthma. "lumbago," and psoriasis. I got pleurisy and pneumonia in 1974 and got by using fasting as the best way to decrease flares for over 15 years. Then I got a serious case of shoulder bursitis that turned into adhesive capsulitis in 1981. By 1986 I developed hip bursitis so bad that I was unable to walk and this cause me to make the biggest mistake of my life: I began taking NSAIDs. First one was Clinoril. I immediately developed considerable amounts of blood in my stool; it one time felt like the only thing that exited was blood! Much later I read that about 44,000 people died from intestinal bleed out in the USA annually due to taking NSAIDs as directed by their physicians.
Some time later, I developed fluid on one knee due to trying to ride a bicycle! Then shortly then after I passed my first kidney stone and by 1989 began showing severe signs of kyphosis and in 1994 developed iritis. The kidney stones and iritis continued to plague me with about three serious episodes yearly until 1999, when I began the No Starch Diet (NSD). And I had one final major flare in 2003 that included knee fluid and iritis while trying to experiment with "natural" antibiotics and consuming too much fresh cheese!
Minor flares were common, mostly due to adulterated foods especially in restaurants. International House of Pancakes once bragged that "Our omelets are so fluffy because we add pancake batter!" It is very difficult to fight against stealthy foods and ignorance about both ankylosing spondylitis and diabetes too! Supplement pills and even drugs are loaded with gratuitous starches, and condiments also! I flared from taking the teeniest capsules with potato starch filler for BORON! Boron is useful in keeping calcium in bones so can be an important supplement.
When I went to India, I took along the NSAID that had done the most damage to me: Voltaren 75 just in case I flared. By the time I left India, I was unable to move my head from right to left and I had developed extreme neck pain. I went to Dr. Zimmerman and he used his SAM on me (Specific Adjustment Machine): A pneumatic plunger with the working tool about the size of a dime and as the affable doctor distracted me with small talk, he hit that actuator button and I had quite a shock that I was prepared for because of his introductory lecture and the movie "The Hole in Your Head," he showed us as a group. The neck pains went away but my kyphosis continued to get worse.
CONCLUSION: I believe that, due to increased gut permeability from taking NSAIDs, my ankylosing spondylitis got much worse. From hindsight, this permeability allowed the germ Klebsiella pneumoniae greater access to my immune system which produced the immunoglobulin IgA-Kp. This immunoglobulin is the agent provocateur in ankylosing spondylitis, and is responsible for triggering cellular destruction in susceptible tissue types resulting in inflammation and degeneration of the skeletal frame and supporting tissues. It is not just the constellations of symptoms separated from before NSAIDs and after starting on them; it is also the acceleration
of new symptoms which revealed the harm caused by these drugs! It is amazingly unfortunate to me that such an effective drug so commonly used, can actually accelerate this disease.