[Suppose I can post mine now--but beware...it IS long and BORING]
This is DragonSlayer's, "Long, boring AS Story:”
“ In 1971, aged 21 years, I began having sciatic pain. I was diagnosed with Ankylosing Spondylitis (AS) in 1978, about seven years after onset of my symptoms. I was HLA-B27 positive, and had the characteristic SIJ fusion.
Initially, I had very severe sciatica that would come in waves and I complained to my physicians about right side buttock and thigh pains. These would then switch to the opposite side. The sciatica was so intense at times that I could feel it even past my knees, and along the outside of my calves.
Within a couple of years, the sciatic pain spread to the lumbar area and this lumbago was so severe that at times I was unable to get up from a chair normally, even after only sitting for a few minutes. Soon, I was not able to get out of bed, except by first sort of falling out and crawling onto the floor. I had to have a very hot bath in the mornings. I would crawl into the tub to soak for a couple of hours before I was able to move enough to go to work.
Sometime later I contracted pneumonia, and had severe ribcage pains upon coughing. About a year after recovering from this, I developed pleurisy of a strange sort in which I became unable to swallow. Within a week, I was taken to the hospital due to dehydration and for evaluation.
At this time, my AS symptoms relented somewhat and I was able to make the connection that fasting helped to control my symptoms of whatever yet-to-be-named disease I had.
My very core would always become painful, and I was unable to turn my body in any swivel motion, or bend over properly, without flexing my knees. Although I did not work in a physically demanding job, it was still very difficult to keep up to a demanding career in electronics with the continuing education required to remain current, along with the demands of family obligations.
Colleagues wondered why I spent so much time at work. It was not the work that was especially wonderful or even my home life that was terrible although later it became so, but I looked forward to the very act of walking out into the parking lot and getting into my vehicle with extreme trepidation. Such simple tasks were torture.
The doctor prescribed a drug called Butazolidin alka (phenylbutazone), but it did not seem to help me very much, and I could not stick to taking pills at that time, so I did not give it an honest chance.
He never told me that he suspected Marie-Strumpell’s disease, and even if he had it would not have meant very much to me at that time. Soon after taking this drug, I developed asthma, although it may not have been directly related; this is the timeframe.
The first attack was quite severe, the result of standing at the edge of a mustard field with the wind blowing in my direction but the asthma did not recur every allergy season, and would usually skip several years. I also noticed that I could reduce the symptoms by drinking potassium chloride, but I could trigger the asthma by eating either macadamia or Brazil nuts. I was at a party where macadamias were offered, and I had to look around for a banana before eating even one nut as an experiment. That asthma attack was somewhat moderated by the potassium in the banana, but it was still there, waiting to pounce.
Eventually, I joined a health club and spent nearly all of my free time there, soaking up what I used to term “BTUs or British thermal units”—it was the heat that helped very much with my mobility. Alternating hot and cold baths relieved the pains, to some extent. In that environment, I met others with various forms of arthritis and they were usually the last ones to clear out of the sauna every night.
One fellow in particular, seemed to understand what I needed to hear and do, and when. He was a student of the Edgar Cayce materials. We studied together at his home, not too distant from the health club. Through fasting and some workouts, I brought myself to a point where I was able to jog. However after doing a few miles on one especially cold night, I was going to have dinner with my jogging partner and he dropped me in the parking lot because I was rapidly freezing up at the hips, and could only “ambulate” by sort of throwing one leg in front of the other and pivoting forward. The next day at work, a girl told me she had seen me at that restaurant: “You looked plastered!” I had to explain to her that I was not drunk, but had just been jogging and could not walk after that.
About this time, I also met Dr. Max O. Garten, who encouraged me with respect to fasting. I had already been on a 20 day water-only fast which resulted in a level of remission that allowed me to begin running again in earnest. I did several 10K local runs, one even on day five of a seven day fast. I was able to begin playing racquetball regularly, after once previously trying to pivot at the trunk this way, and then doubling over in excruciating pains.
I began water skiing, then snow skiing. I spent more and more time at lifting weights and worked with some power lifters on the machines, but was still unable to fully switch to live weights, since I had lost too much muscle control to the disease by the time I was finally diagnosed.
Initially, after the AS diagnosis, I participated in an NSAID study and spoke to the physician who was coordinating the investigation. It was my own logic that made me suggest that if the pains were decreased, the disease activity or progression should also decrease accordingly. This doctor was much wiser than that, and suggested that although the pain might be reduced, this could be the result of something unrelated to the disease. They wanted the proof, either way. I must have gotten the placebo, because the pills had no effect against my pain or progression of this disease. The fusing process had begun, with sacro-iliac joints already involved. My doctor monitored my ESR, which began to increase and tracked the disease activity, to some extent. At one time there were encouraging results and he asked me the reason. So I told him that I had been fasting and was more careful with what I was eating, which was true. Since I had become a vegetarian and found some minor relief, but more importantly, I had been fasting. He BOOMED “There is NO DIET for arthritis!” and I knew that I would not be visiting him ever again.
There was a girl I was quite fond of, and she married a good friend and we remained very close, as she began having health problems, soon discovering that she had Crohn’s Disease. I spent hours studying this condition and found that this was more likely in persons who smoked, an unfortunate habit that I encouraged her to eliminate. After reading more about Crohn’s, I discovered it mirrored my own disease, except for the terrible bowel strictures. I saw this lovely young girl suffer terrible pains and one indignity after another, finally having the colostomy and perhaps all due to the habit she could not extract herself from. This was an early lesson for me, because I had my own habits, related to AS, that I could not so easily overcome.
Chiropractors know much more about nutrition, supplements, and herbs than most doctors, I suppose that the chiropractors really have to know more about diets, since they cannot prescribe drugs, so rely upon natural things.
I tried almost everything then available: High colonics, chiropractic adjustments, cranial plate alignments, radio-frequency heating, ultrasound, dietary cleansings, coffee and seawater enemas, prayer, Reiki massage, meditation, acupuncture, herbs, craniosacral adjustment, eliminating sugar, eliminating soda pop, every supplement and free-form amino acid, psychics, and aerobics. Nothing was ever nearly as effective as simply going without all foods.
After fasting, I would always feel better, but the pains would creep back and immobilize me once again. Shortly after diagnosis, I had a severe episode or flare-up only hours after eating some fried rice. I found that most fried foods could trigger a flare, but especially fried onion rings. It took me many days of fasting to recover from these flares to relent and enough to get me back to some normality. Tempura, French Fries, falafels, a vegetarian’s perfect food, and papad a fried Indian bread. each of these delicious foods, made me flare-up significantly. After one such meal, I developed extreme shoulder involvement, which was bursitis with adhesive capsulitis and excruciating pains. Just the lightest touch on my shoulder would result in sharp pains, and when I broke off the head of a screw while under great torque, the sudden jarring sent me on a berserk-like pain rampage. It ached for many days on.
I often had waves of deeply aching pains that lasted for many days. I was still going to the chiropractor, and she was a bright and funny German lady, large enough to get movement from my too stiff bones. When I fasted, however, she commented on how much more mobile I had become, wondering why and I informed her it was the fasting. Another of her patients had rheumatoid arthritis, and she suggested fasting to her. The suggestion was received with “Are you trying to KILL me?!!” When I returned for a treatment, the chiropractor related to me in her characteristic Teutonic inflection and cadence: “Zot fot fot vooman, auch! She couldt fast for a MONT—und she shouldt!” I was not aware at the time that there might be an entirely different diet for rheumatoid arthritis.
Despite everything I had tried, my hip bursitis increased to the extent where I was unable to walk. Sometimes after I had tried forcing myself to put weight on my left leg, odd rectangular-shaped blood patches or hematomas appeared on my upper thigh. Although I had been very anti-drug up until that time, AS began affecting my work, so that I relented and finally gave in to the quacks’ poisons. Within three days of taking Clinoril (sulindac), I was once again able to walk, but after two weeks I developed severe stomach pains and passed only blood upon going to the toilet. In an attempt to avoid a trip to the ER or Accident & Emergency sections of the hospital, I took about three handfuls of myrrh resin, and, exhausted as usual, went to bed. Upon finding myself alive and awake, I resolved to avoid that same medication in the future, and began learning about hip replacements; I had visions of myself taking my mineral pick to the joint which has caused me so much pain and grief. One experienced old orthopedic surgeon told me that there were others who might do such a surgery for me, but he would never do this because I was too young and he believed that I could somehow heal my hip because bone is a living tissue. I continued to switch rheumatologists and NSAIDs, but ended up with some extreme gastrointestinal tract damage. I realized that, after extended fasting, I could again often do without the new drug Voltaren (diclofenac), but when used, it metabolized out rapidly whenever I did even moderate workouts.
By this time AS had cost me my family and many other relationships and a long-term one that had lasted 15 years. My regular career, a side business, a portion of my home equity was confiscated by aggressive tax collectors, together with the later equivalent of several millions of dollars.
It has been said that, sacrificing your health to your job, no matter how hard you work and how much you are paid, there is no way to earn enough to buy back your health. The financial losses constituted the least of my regrets and pains, but there was more AS-related terror to come, for soon I developed kidney stones and then iritis and risked losing my eyesight.
Prior to taking NSAIDs, I had never had either kidney stones or iritis. The doctors would suggest that these were just conditions that resulted from advanced AS; they did not then understand the damage caused by NSAID’s.
Studying the Edgar Cayce material, I had found that his biographer, Thomas Sugrue, probably also had AS but they attribute his illness to some reactive arthritis. His symptoms were nearly identical to my own, but I had incorrectly reasoned that between Cayce’s era circa 1920s and ‘30s and fifty years on, medical science would have advanced beyond the frustrating suggestions in the Cayce readings for arthritis. Cayce told Sugrue that, regarding his disease “Diet is EVERYTHING.” And “…eat more vegetables that grow above ground than below, and if eating potatoes, eat the jackets and throw away the pulp!” I also mistakenly thought that “modern” medical science had even progressed beyond Giraud Campbell’s regimen of MEAT, MEAT and more MEAT and NO STARCHES, especially my daily bread. I never wanted to believe these things, so I relied upon my physicians’ advice, instead.
I began doing some consulting work, and one project demanded that I travel to India. While there, I was seen by The Hakim (doctor)—Sayed Hamid founder of Hamdard Corporation and then head of Aligarth University. He was 92 years old then, and came in, speaking only to my hosts, but he took my pulse for many minutes, then wrote out a prescription we filled at the on-site herbal compounding chemist. As we exited The Hakim’s offices, one of my hosts acted hurt, saying to me “John…do you know what this man has said.” I replied in the negative, observing and reminding him that I do not speak Hindi. “URDU!” “He told us that your mother is long dead and you have an older sister and a younger brother!” I curled my brow, but told my host that Hakim Hamid was exactly correct. “WHY have you not ever mentioned your brother to us?” I had to explain that my brother was a paranoid-schizophrenic, and it was too difficult to communicate with him, so I stopped trying. Certainly, I hold him no ill-will for his condition, which I believe is the result of in-womb abuse; my mother smoked and drank during her pregnancy with him in the late 1950s. She was a “registered nurse” (RN), and also had a medicine cabinet full of pills that did her no good at all. She expired only months after her 42rdbirthday. I wonder now whether her early demise could have been as a result of heart-related AS complications in combination with her terrible lifestyle choices, making it further difficult if not impossible to diagnose, with certainty, her condition.
The herbal pressings prescribed by the Hakim did not seem to do much right away, but soon I had other, more severe complications of “Delhi belly” to add to my misery. This severe episode of enterocolitis had me flat in bed for nearly two months. My hosts brought me medicine after consulting with the local chemists, and although I began to get a little better, it was fully two months before I could stand up for very long. The normally, obnoxious noises of New Delhi mornings, on one morning in particular, became the sweetest and most angelic music I could imagine. My ears had cleared, and I heard the bell of one of the recyclers ringing crisp and distinct, and I knew that I was going to survive. I even began feeling great, and went on long walks in the Saket District near Qutub Minar. On one occasion, I was being yelled at by some vendor, or so I thought, but when he came running up to me, he asked “Don’t you recognize me?!” YES, it was the owner of the best Indian restaurant in the San Francisco Bay Area—“Swagat” in Milpitas. Patronizing his establishment often, I certainly brought them a lot of business, since my company was also located in that same city. Out of a billion people, he recognized me, mostly due to the fact that I had a severe hunchback or kyphosis, thanks to AS. I also had zero articulation or rotation of my head, so cannot turn around to scan who is there.
Later, I moved to Simla and had a constant supply of food consisting of of pooris, a puffed Indian bread which comes with curries and the occasional dosa or pancake, but what really did me in was my birthday dinner of mayonnaise sandwiches with dill pickles. I got myself into a major flare-up or relapse , and could not understand why until much later, in retrospect, after learning the cause and best treatment for AS. I initiated a week long fast, to the chagrin of the cook assigned to me. At nights I had been hearing what I though was a woman in distress, but one night while fasting I was called out of my rooms with shouts of “SHER!” and I witnessed a snow leopard, bounding away after trying to peel off the tin shed roof to get to the pet dog kept by my hosts. A graceful, beautiful creature turned its head to gawk at me, without breaking stride.
By the time I returned to the US, the internet had become a more solid and reliable tool, as I had expected, and new search engines replaced the old code-heavy crawlers. One of the first things I typed was “ankylosing spondylitis,” and I found a support group founded by a patient with severe disease and wheelchair-bound. It was “Brian’s AS-web” and soon Brian was unable to keep up with basic site maintenance, so we contemplated starting another website.
The discussions on the old site were at first commiserations and drug comparisons, but I had mentioned my fasting experiences and the fact that fried foods caused flare-ups or relapses. I had wondered whether others had similar experiences. Most were totally lost, as most patients are to this very day, but one—George McCaffrey, an Englishman—was able to tell me the story about starches. He was gracious enough to send me technical papers written by his rheumatologist in England, Professor Alan Ebringer, and his colleagues. What I found out, through those many pages of difficult jargon, absolutely supported my many observations and the big flashing billion candle power strobe went off over my brain, along with high-decibel audio alarms: We FRY starches. FASTING reduces all gut bacteria.Antibiotics kill E. coli that cause Delhi belly, but also the K. pneumoniae that cause AS. The final connection: AS is CAUSED by a bowel germ acting across a membrane, the gut epithelium, which is too permeable and NSAIDs make this membrane even more porous, sometimes even causing bleeding and occasionally even death. The suddenly obvious explanation as to why my AS symptoms increased, and I had become hunched-over and fused within five years of starting these drugs, is that they damaged my gut enough to allow more bacteria to cross through the gut barrier, and trigger my too-familiar autoimmune reactions. This germ is a survivor that blooms exponentially in the presence of starches and the more of this bacterium, the more will make it across.
The problem was that, as a vegetarian, STARCHES were my main source of food; they were MY addiction. I tried to remain a vegetarian, but that only lasted about a year before I was too close to getting diabetes to keep my energy levels up. I met George during this transition, and although his ESR had been over 100 (Normal range 1-20) in the same year as my own, he had almost no kyphosis, yet I was very hunched over. The difference was that he had been on Ebringer’s “London AS Diet” for the previous ten years, while I had been eating starches and taking NSAIDs during that time. I recognized how important Ebringer’s papers were, so tried to some extent to reduce them to layperson’s terminology. My first attempt was “AS Dietary Primer,” but people were not flocking to the diet in droves, although one of the members from Spain translated it into Spanish, so I began hearing from fellow patients in Spain and Mexico. And the site freetranslation dot com has been wonderful and very accurate--enough to help many people.
There was much dissention on the website—people did not welcome the news that they would have to change so much about their lifestyle; there HAD to be an easier way! “PLEASE don’t tell me I have to give up food—it’s the only joy I have left in life!” It was difficult, and we had all-out battles that got rather personal.
Simple starch-exclusion did not work very well for me at first, only just well enough to let me know that I was on the right track, so after a couple of months I began taking antibiotics. First it was a week before I could again walk without pains, but it took yet another six months cycling through antibiotics and the strictest diet before my costochondritis totally relented. During the next year and more, I kept improving slowly, and I studied which foods to eat and which to avoid. “Let thy food be thy medicine—and medicine be thy food,” as Hippocrates is credited with saying. I worked up my own antibiotic protocol (AP) for AS, after consulting with many microbiologists and scientists at several universities I had access to through my consulting businesses, and had already met many students and faculty members, especially in the data-intense medical fields. Copies of the technical papers authored by Ebringer, et al were given to key individuals, and soon I had enough new supporting data to reinforce what I already knew worked, and by then many people had great results with dietary restriction of starches but I observed a funny thing: Every single scientist working in academia, when confronted with the Ebringer information, agreed with the conclusion about the cause of AS. However, almost every doctor, and especially every rheumatologist, is totally dismissive, if not outright derisive of diet and none invested any time to even try to understand the AS mechanism which is adequately explained by Ebringer and coworkers. There was a long battle ahead, but we obtained some financial support, and I was able to correspond with many people, all over the world, and they had fantastic results.
George not only helped to fund the KickAS.org website, but also several seminars, bringing both Professor Ebringer and Carol Sinclair out from England to teach those of us who are interested. Carol does not yet have fused sacro-iliac joints because although she has AS and her father was severely hunched over, her primary symptom was “Irritable Bowel Syndrome” (IBS) and she, discovered, independent from Ebringer, her own “very low starch” diet. It is the wheel being discovered over and over again: At least six independent researchers and patients have published about the starch connection with AS, and many others have published about grains and other foods that cause or exacerbate inflammation.
The founder of KickAS, Pete, was able to go starch-free for a few months, then low-starch for perhaps a year, and, as we both believe, since he had never taken any NSAIDs, except for the odd aspirin for headaches, having watched his father die from these drugs used to treat AS, healed his intestinal tract enough to backslide into a near-normal diet with no consequences of AS. This is the opposite of what happens to many of us who become more sensitive to smaller amounts of starch at first, and must even eliminate dairy foods.
Almost feeling TOO good, I broke my back while hanging a front door, so required Harrington rods, to be inserted into my lumbar spine. Later, I fell down the stairs at my house and was unable to get my chin off of my chest, always looking as far forward as the tips of my shoes. I consulted a neurosurgeon and he showed my pre-op X-rays to his colleagues who all thought they were medical curiosities, since I was obviously dead; I had a 93 degree bend in my spine!
I was suggesting to him that I thought my bones were in pretty good shape, since I had been on the starch-excluding regimen for many years. After my 20 hour surgery, a record for that hospital, he complained that “…drilling into your spine was like drilling into wet drywall.” I was in a halo for a couple of months after my C7 cervical vertebra was totally removed and C6 shaved at an angle so that I could look to the front once again. Much bone paste was squirted into my spine to rebuild it, but I required mechanical brackets on each of the other cervical vertebrae. Then I noticed the lower back pains once again; perhaps I re-broke my back during the tumble down the stairs.
AS is a runaway freight train, difficult to stop and impossible to predict exactly when and where it will stop, even when diet and the correct drugs can be employed.
Today, I can eat some limited starches but AS is not finished with me, for if I eat too much starch or bad food combinations, I will get the familiar pains of temporo-mandibular joints (TMJ) or my iritis will reemerge and then I take antibiotics and fast or become much more strict with the diet.
Dieting, over the previous nine years, is certainly not a placebo. When I am hit with unexpected sources of starch, often in commercial salad dressings that I have not tested with iodine, but sometimes in supplements, I begin getting AS symptoms again. I am resigned to the fact that the drugs have damaged me to the extent that I might never be able to eat a normal diet again. Staying symptom-free is well worth this small sacrifice: I eat to live, instead of live to eat.
Before the strict diet and antibiotics, I averaged at least three kidney stones and between one and two severe episodes of iritis annually. I had constant severe ribcage pains, terrible heel spurs, hip bursitis, TMJ, and even shin splints. There were days I was disappointed that I awakened, and when a close friend died I told another friend in common that I wished it had been me, instead.
Since then, I have not had a single kidney stone, my asthma is totally gone, and I have had only one episode of iritis, when I ‘experimented’ with “natural” antibiotics in 9 years, and one episode of knee edema at the same time. No costochondritis, no plantar fasciitis, no periostitis, two minor episodes of TMJ and one of bursitis when antibiotics I began taking were not active, but the situation was rapidly corrected by taking known good agents, samples of which were retained for just such an eventuality.
I have remarried, and my new wife demands that I remain healthy, so I have her constant support in eating correctly. The only pains I now have are from existing damage, although I know that AS is not done with me, and had I not become informed and acted upon Ebringer’s work, AS could have claimed my heart and my dignity. (I have read that Cauda Equina Syndrome is especially nasty). Annie, my wife, is from The Philippines, and we built a home there and remain actively engaged in helping some of those less fortunate people in the area of San Fernando, La Union, who now have trouble meeting even with their basic necessities of life. I certainly saw too much of this while I was in India. Also I maintain an active correspondence around the world with other people who also have AS and are interested in treating this disease using diet or better drug choices. I regret very much that doctors are so dismissive of the power of diet to control AS progression, which has been proven even before Ebringer and coworkers, published their compelling data. It is terrible to find out that rheumatologists are even today just as clueless about AS as they were so many years ago when they offered me the damaging drugs and terrible diet ‘advice.’ I have found out that Ebringer’s work is appearing in newer textbooks, so perhaps future generations of physicians will adjust their thinking, since I am certain Max Planck’s axiom will hold: “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is more familiar with it.”
In view of the fact that diet, and specifically starch, has been linked with AS over the past seventy-five years by at least six separate and totally independent observers, even to the point of publication, I have my own modified adage: “Those who decide to remain ignorant about basic statistics are condemned to become one.”
Beyond any other regret I have in my life, I most sincerely regret ever taking my first NSAID! These drugs allowed me to continue eating starches, only reducing the pains while my bone damage, and especially intestinal damage, progressed unchecked and mostly unnoticed. At least before NSAIDs, when I needed to fast, the mechanism causing the AS was arrested, if only temporarily.”