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.
Chronic Disease, Diet, and Karma
A journey back to health
My battle and victory over Ankylosing Spondylitis
By John Merchant
The inescapable relevance to Crohn's Disease and asthma, with new considerations for Rheumatoid Arthritis and Multiple Sclerosis.
References: (key words used in this book)
Marie Strumpell's; Morbus Bechterew; Chlamydia-Reactive Arthritis; Reiter's Syndrome; chronic fatigue; iritis; acute anterior uveitis; megacolon; lumbago; sacroiliitis; poker spine; bamboo spine; costochondritis; adhesive capsulitis; bursitis; HLA B-27; HLA B-51; Behcet's Syndrome; Silk Road Disease; plantar fasciitis; TMJ; bridging osteophytes; syndesmophytes; SIJ fusion; Klebsiella pneumoniae; Acinetobacter calcoaceticus; Proteus mirabilis; crepitus; kidney stones; renal calculi; SED rate; ESR; pericarditis; left ventricle insufficiency; aortitis; periaortitis; CRP; retroperitoneal fibrosis; amyloidosis; aspergillosis; knee edema; periostitis; shin splints; Salmonella-Reactive Arthritis; Shigella-Reactive Arthritis; celiac; Psoriatic Arthritis; psoriasis; toe dactylitis; undifferentiated spondyloarthropathy; variant Creutzefeldt-Jakob Disease; mad cow; prion disease; molecular mimicry; hypermobility; Ehlers-Danlos Syndrome; kyphosis; lordosis; Cauda Equina Syndrome; trapped nerve; stenosis; dowager's hump; fingernail striations; chelation therapy; acupuncture; chiropractic; The London AS Low-Starch Diet; Keto; fasting; rife; cryotherapy; apitherapy; wet cupping; exsanguination; antibiotics; DMARDs; TNF inhibitors; NSAIDs; LDN; The Roadback Foundation; sulfasalazine; methotrexate; steroids; Tylenol; acetaminophen; osteopenia; osteoporosis; scoliosis; pseudarthrosis; asthma; allergy; environmental allergies; histamine; ulcers; ulceration; Inflammatory Bowel Disease; Irritable Bowel Syndrome; Leaky Gut Syndrome; SIBO; small intestine bacterial overgrowth; UTI; Helicobacter pylori; dumping; spastic colon; constipation; microlesions; IgA; immunoglobulin; tailbone pain; coccydynia; carafate; ileocecal region; Peyer's patches; colloidal minerals; colloidal silver; chelated minerals; substrate modulation; ulcerative colitis; SpAs; benign neglect; GERD; Udiff SpA;
Chapter 1: How I Eliminated AS Symptoms
diet, antibiotics, exercise, and supplementation
Chapter 2: Why I Chose This Unique Method
experience, fasting, monodiets, evidence
Chapter 3: Speculations on the Activities of AS
technical explanations, getting diagnosed, projections concerning other diseases like
asthma, MS, RA, Crohn's Disease, knee edema, kidney stones, GERD, osteoporosis
Chapter 4: Patient Feedback; Mountainous 'Anecdotes'
kickas.org, Facebook groups, new supportive anecdotes, The London AS Diet, The NSD, Royal Raymond Rife, alternatives, Wayne Green and bioelectrifier
Chapter 5: Ultimate Outcomes
My 20 hour surgery, burnout? the future?
Chapter 6: Multiple Sclerosis and vCJD
molecular mimicry and MS, mad cow, are there really prion diseases?
Chapter 7: Rheumatoid Arthritis
differential diagnosis, a different presentation; different germ, do I have AS or RA?
Chapter 8: Ongoing Health Issues
Chapter 9: My Own Karma
Chapter 10: Psychic Wife
Chapter 11: Problems of Work
Chapter 12: Problems of Travel
Chronic Disease, Diet, and Karma
This book is my own palimpsest, or collection of writings produced over the years, and as such will contain certain redundancies. Any portion of Book I can be reproduced without my specific permission if the purpose is to help others. Understand that there are warnings: My methods are of my own synthesis and unique to my situation and time; the concepts might be useful, but exact methods should be tailored to the individual. Newer drug agents, better information, more studies, and more prudent risk versus reward choices will certainly alter any decision about a course of treatment.
Having AS is like being in suspended animation; years can pass by and it's like the Time Machineâ€”we can't do anything about it! Don't allow AS to steal your time! Take it back and live your life to the fullest, enjoying every moment. You are already in the future, so enjoy it now, not later! I hope that you can eliminate all AS symptoms and make deposits into your health bank so that you will not suffer and make the mistakes I did, regretting what I SHOULD have done for myself!
Finally, I would like to make apologies. AS is a disease of calcium mismanagement and the depletion of this mineral from our bodies can result in over 100 disease conditions and each of these can be described in several different ways, of which I have omitted nearly every one! This disease is like the Gordian Knot, and in my own process of unraveling it, I felt as if I were trying to make goose liver pate; shoving as much information down a funnel as would fit! It is messy and seems like there would be a more methodical way to share this information, however, every time I tried it seemed to fall flat. The only way was to relate things in a â€œstream of consciousnessâ€ gonzo style that I could never be satisfied with, but this is not a Duch Masters painting. So, enjoy the ride and I am sorry for the potholes that are rabbit holes!
May you regain HEALTH and know that anything worth having does not come so easily. This book is free, but its contents came with a price that I hope other patients will refuse to pay!
Ankylosing Spondylitis (AS) is a chronic degenerative condition similar to Rheumatoid Arthritis (RA); it is an arthritis of the spine (but, also very much more). Through patience and some personal discovery, I was able to overcome AS, albeit too late to avoid considerable skeletal damage, only just early enough to save enough to have a good life.
The purpose of this book is to describe, as close as possible, exactly what I did to defeat this terrible monster so that other patients will be encouraged to do the same; hopefully much sooner on their timeline than myself! The book references some technical papers, but footnotes are confined to a minimum; it is not meant to be a complete or scholarly exploration of AS.
Book I is released for free and general distribution because I want to help others in their quest for health. Perhaps this work will enkindle the desire in other patients to experiment, and then add to our collective experiences. Please do not ever think that, because this information is available for free, that it has little value; the exact opposite is true!
Book II reveals much more personal information and answers the most obvious questions about why karma, and understanding this law, has been a primary factor in my healing journey. If the reader benefits from the information I provide in Book I, it is my hope that they will purchase Book II.
I will begin and (mostly) end my discussion of karma, for the purposes of Book I here: Karma is really Newton's Third Law of Motion, infiltrated into every aspect of our lives. We are our own most critical judge, and we know our own motives and attitudes; might we punish (or reward) ourselves, consciously or not, accordingly? I will not dispute miracles, or karma versus grace: This disease can be defeated despite adherence to most doctrines.
In the many years before my diagnosis, I studied the Edgar Cayce material and the topic of KARMA kept asserting itself into the equation and no matter how much I wanted to dismiss it, I had to confront the possibilities: A previous lifetime certainly created, my severe physical condition in this life. This might turn out to be a truth; I will leave it to the reader to agree or dismiss. Experience has taught me that attitudes and emotions govern our progress in healing and it is easier to regain health without mental stresses and conflicts. The problem with a karmic inheritance is that the person I was before, influenced the person I became in this lifetime
Every person, especially those of us with chronic disease, should carefully follow The Golden Rule and seek peace within ourselves and environment. The Golden Rule applies to every creature in our realm: Humans and animals alike, all should be treated with kindness and dignity. This sounds like a very simple and obvious concept, but when a person is suffering in the physical, they can become impatient, even unkind. I was impatient, unkind, brutish, and surly and the justification of relentless pain does not matter; the result is the same: More pain and stress, and much slower healing.
Chronic stress can rob us of our health, and if we give stress, we always get it right back! We must change. One comment by Edgar Cayce, who spoke to people in a very polite and respectful way normally, rebuked one patient with something like WHY would you have health, just to be more of the absent father (I am not quoting verbatim, but this made an impression), more of the distant husband? So the Universe kept me under its thumb; it did not need another creep like I had become! I changed because I had to change!
Chapter 1: How I Eliminated AS Symptoms
Ankylosing Spondylitis is one result of a disease that should be called Klebsiella-Reactive Arthritis. Persons genetically predisposed to AS do not react to the Klebsiella pneumoniae germ directly, but to the presence of this pathogen by producing immune compounds which cause cellular destruction. The agent-provocateur in AS is the immunoglobulin IgA-Kp. The disease mechanism is called molecular mimicry, where a sequence of our own tissue outer surface protein, matches up with that of the pathogen and the IgA cannot distinguish between the two.
Upon learning the above, I had to figure out how to defend myself against what seems like an impossibility: This ubiquitous, ancient, genetically diverse, adaptable, and prolific pathogen. The first obvious thing to do is to use some kind of antibiotic, but every scientific experiment with such treatments failed. However, one Gary K. who had been on his way to tennis stardom before AS struck, began using Cipro with wonderful results! He remained mostly symptom-free for nearly a year before his 'AS returned with a vengeance!'
Substrate modulation, or depriving the germ of its usual food, is quite difficult because this germ, in particular, thrives on starch; just like most humans! I tried eliminating the primary sources of starch, and found only modest results.
Macrophage therapy might have helped, but there was no source of treatment available to me and apparently Russian scientists were the experts in this still potentially viable option.
Vitamins, human growth hormone, sea cucumber, shark cartilage, herbs, minerals, and all manner and means of manipulation, even including cupping and bleeding, offered to me by a hakim near Red Fort in Delhi, offered some relief but no solid cure. More about some of these later--
After some experimentation, I formulated my own protocol using antibiotics, diet, exercise, and aggressive supplementation:
My concept was something that worked for me: Reduce the numbers of this bacterium by fasting then hit them with bactericidal agent while starving them of their food as much as possible, maintenance on a bacteriostatic agent when I could eat a less strict diet.
WARNING: This information is provided as evidence that the cause of Ankylosing Spondylitis is the germ Klebsiella pneumoniae. It is not intended as sound medical advice of either a specific or general application, and every person should use caution before taking any drug, and individually consult with a competent medical professional. Neither the author, nor the publisher assumes responsibility for any negative result which may arise as a consequence of ignoring this WARNING.
Ciprofloxacin 1g once daily for eleven days, during which time I consumed almost no starches.
Tetracycline total 1500mg taken 500mg three times daily about 15 minutes before each large meal.
Continued for typically 30 days during which time I ate a heavily reduced starch regimen while taking safe supplements: VitD 4000IU, vitC 2g, vitBcomplex, zinc 50mg, copper 4mg, selenium 100mcg, magnesium 500mg, calcium 2g, boron 3mg, glutamine 1g, and glycine 1g. Sometimes collagen 1g, manganese 8mg, rarely iron 40mg. Almost every day I took a minimum six teaspoonfuls of extra virgin olive oil and I recommend more, and rarely needed borage seed oil for pain: Between 5 and 8g before retiring at night and also fresh wheatgrass juice to help reduce a flare: 4-6oz a couple of days in a row on empty stomach usually helped. I confined my exercise to mostly weight lifting and exercycle because swimming had become too difficult due to my kyphosis (hunchback).
A typical day for the strict no starch cycle might begin with scrambled eggs, turkey sausage, or an omelet for breakfast, sometimes grapes or raisins, almonds, and other safe foods. Salads in the afternoon, some with tuna, perhaps burger patty, tofu steak, chicken, or salmon for dinner. My wife developed a tofu salad, and often served okra, bitter melon, cucumbers, and sometimes I cooked and stored a bell pepper, onion, celery, and tomato mixup that was good filler. I don't think that I react to nightshades because I never had any trouble after eating my mix, which is cooked to death! This is the extent of recipes ideas I want to post, as there are many recipes in Carol Sinclair's â€œThe IBS Low-Starch Dietâ€ with foreword by Professor Ebringer and please note that in this foreword Ebringer discusses the mechanism of AS and seems to exclude non-HLA B-27 patients. He has clarified this statement to say that the reason he did not include non-B27 patients is that he did not study them. However, he has noted that Crohn's Disease is caused by the same mechanism and the same germ and the majority of these patients do not possess the B27 antigen. Essentially: Diet can and often does work for B27 negative patients with AS and/or Crohn's. Very good recipes can be found online: https://forestnfauna.com/ https://starchfreefeasting.com/
The KickAS.org website has many NSD recipes and information for beginners on the NSD and diet-related forum.
There is an extensive starch content of foods list posted on the KA website in the NSD and Diet Forum. Basically, I at a green salad almost every day, breakfast has been covered above but the snacking consisted of a kind of GORP without the peanuts: Almonds and raisins are the ideal combination, but walnuts and dried cranberries, and sometimes I would add sugar free chocolate morsels which makes this trail mix extremely filling. For variety I would combine pepitas (dried pumpkin seeds) and green olives, Kalamata olives and feta of course, antipasto, Indian pickle, hard boiled eggs (not my favorite), and similar. Some of these have a modest amount of starch like the turmeric in Indian pickle, so I would stay away from these during 11 day regimen. I considered it very lucky that TOFU is not very starchy and for whatever reason I have never reacted to it. However, I consumed very small amounts and almost none during 11 day regimens. On the other hand, cheese can be devastating and I got myself in big trouble trying to make mozzarella the main course instead of a condiment! Fortunately, I learned this lesson early enough to avoid fresh cheeses in favor of aged (hard) cheeses. The disadvantage to starting antibiotics is that I became unable to discern which foods were dangerous during the 11 day because my theory was that, if I could avoid all starches then, I would be less likely to develop abx-resistant colonies.
Chapter 2: Why I Chose This Unique Method
I have no medical background and just consider myself lucky that my contrived method actually worked without doing more harm! But I am also lucky to have had some happy accidents and able to make certain mental connections: GLARING at me from my bookshelf for many years was the book with this infuriating, imposing title: â€œA Doctor's PROVEN New Home Cure for Arthritisâ€ by Giraud Campbell. I read through this book and the testimonials from patients who had Marie Strumpell's! I was diagnosed with this before they changed the name of the condition to AS. But I noticed that none of the foods in Campbell's restrictive diet were fun: This regimen concentrated upon meats and left out our daily bread! Exact opposite about what I had been hearing about the arthritis diets. I became a vegetarian, instead! Campbell's book was only one of many reasons that, upon learning of Ebringer's great work, I knew immediately and with absolute certainty that diet was the environmental factor in AS: As has been observed, 'genetics loads the gun, but environment pulls the trigger!' This wheel keeps getting reinvented; perhaps written in French by Dr. Jean Seignalet, or otherwise some distortion by Jackie LeTissier â€œFood Combining for Vegetarians,â€ and Edgar Cayce's admonition to his biographer who could have had AS or something closely related: â€œEat more vegetables that grow above ground than below.â€
Many years earlier, several months after a bout with pneumonia, I developed a very odd case of pleurisy that made it difficult--and then impossible--for me to swallow! Not able to drink water even, I ended up in the hospital to rehydrate through iv. Upon my release, I was happy that I had lost some weight, but shocked that my AS pains were gone! Naturally, these returned almost immediately upon eating again, ignorant of the proper foods and even ignorant of what disease I had: The HLA B-27 connection had not been discovered. So for many years, I fasted to take down the worst of the flares and even fasted for 20 days once, after which I was able to run, play racquetball, and even water ski! Yet, my diet was my worst enemy. I knew that fried foods in particular would set me off, but could not make the starch connection, or did not want to make that connection on my own!
Finally, the internet came of age and I got online to discover â€œBrian's AS Webâ€ and I mentioned that there was a FOOD CONNECTION with AS. George McCaffery responded immediately, telling us about the work of Professor Alan Ebringer, and how he personally overcame AS! I met George on my way through Houston where he was kind enough to bring Ebringer's technical papers to the airport for me! He was instrumental in founding the KickAS website, and even financed seminars for AS patients lucky enough to meet and question Professor Ebringer and Carol Sinclair! One of the KA members found out about Carol's IBS regimen and had her contact Ebringer who is an Australian living in London and she was from New Zealand living perhaps in Cotswalds area. George was also British living in the USA at that time, but since enjoying retirement in England.
Another person posted his story on the internet: Gary K., who had AS and found that he was able to treat his symptoms with ciprofloxacin. Apparently, he was successful for about one year, but then his symptoms â€œ...returned with a vengeance!â€ Perhaps while not paying attention to diet of which he was probably not aware, he developed cipro-resistive colonies. Some clinical experiments were performed to study antibiotics to treat AS and these studies never demonstrated any real advantage; perhaps the design of experiments were not suitable or the assumptions might have been incorrect. The goal of such a test would normally be to change one and one thing only, so that a causative linkage can be identified, however, most antibiotics are broad spectrum agents and there are so many variables involved, especially the fact that the other (good) germs that the antibiotics affect will increase AS activity because the mucosa will be compromised! Instead of a scientific experiment, I did not have time to run through proofs to play with a Design of Experiments construct, so I changed many things at once, based upon SWAG from my meager understanding. In our discussions, many people thought that antibiotics acted as anti inflammatory agents! I took myriad different antibiotics before settling on cipro/tetracycline. All antibiotics that have no effect upon Klebsiella pneumoniae also had no efficacy treating my symptoms. And there is a time constant involved: It took four days for me to test each agent. Four days of fasting for relief, four days!â€”much later I found out about this time constant: As an aside during his San Antonio lecture, Professor Ebringer mentioned that the half-life of IgA is just under 100 hours! The MAGIC FOUR DAYS!
My goal was to avoid the negative outcome Gary K. experienced, or at least delay it for as long as possible. Another goal was to be able to effectively treat my AS for just a few dollars per day as opposed to thousands spent by patients and insurance companies on the new biologic drugs! I knew that as a country we were in a very bad situation regarding health insurance: One patient was very cavalier about his insurance company picking up the tab for his Enbrel; I could see then that this industry was headed for trouble with a capital â€œTâ€ and that came soon after in the guise of â€œAffordable Care Act,â€ which shifted practical coverage away from the working poor to the indigent at the expense of the middle class. The same number of patients remained uninsured only those who did not deserve any coverage got it, and those who actually put forth the effort were completely priced out! But of considerable interest to me were AS patients living in other countries. Oddly, in many countries it is relatively easy for people to obtain antibiotic agents, especially in places where clean water is scarce and pharmacists actually do their jobs! As paternalistic as these countries are, they are no match for the Draconian regulations in socialist industrialized nations.
So, I combined DIET plus ANTIBIOTICS and got very lucky. I consulted with several microbiologists (my sister was one) and other biosciences people and they could not agree on the duration of taking ciprofloxacin: Most had concluded that it would be over 10 days but less than 20 and I hit upon 11 days. The typical dosage period might be 10 days and so I was not too far off adding one day! At that time, I had no concept that I might have small intestine bowel overgrowth (SIBO), and doing CYCLES of bactericidal agents amid the continuous bacteriostatic regimen could chip away at this incredibly massive ubiquitous assemblage of colonies. The few times I tried to stop the antibiotics were met with returning symptoms; I thought that I was going to be confined to antibiotics plus diet for the rest of my life! I thought that the risk of C. diff. would always be my Sword of Damocles, and tried to come to terms with the ever-present danger of yeast overgrowth due to constantly taking the antibiotics. Whenever I decided to take a break from my regimen, I would fast between four and five days, and also do cleansings that involved enteric-coated oregano oil, colloidal silver, and a handful of herbs. I had wondered about the potential that I might have once contracted giardiasis, and so sometimes I added Flagyl to my regimen.
During the time I was deciding upon the best course of action and the best antibiotic, I tried The London AS Diet for many months, but found only minimal relief and was constantly flaring due to some â€œstealth starchesâ€ hidden in salad dressing, or even certain supplements or fresh fruit! When I got much more strict the diet worked better but I still had some level of AS activity that I was unable to fight except through fasting. I reasoned that I had large colonies constantly creating a flux of triggering hexamers, even from dead bacteria sloughing off from their colonies. This constant activity was unwelcome and it helped me make the decision to employ antibiotics. I knew that, once I began taking these agents, I would no longer be able to distinguish between safe foods and those which cause flares, but it was worth sacrificing that ability. Finally, however, I did the Edgar Cayce Apple Diet, followed by an 11 day regimen of Maxaquin then doxycycline (not as effective as tetracycline and made my stomach upset) about a month followed by another 11 day cycle of Levaquin then a cleansing regimen of very limited foods: Scrambled eggs, salads including tuna, enteric coated oregano oil with every meal, plenty of EVOO, fresh lemon juice, and a concoction of the clay Bentonite, plaster of Paris (calcium sulphate), and something called Calphonite. After this regimen, the strict diet alone without antibiotics continued to keep symptoms away for nearly a year and I broke my regimen on a flight to Philippines and began to notice incipient iritis, so quickly got back on antibiotics and returned to very strict diet upon arrival. The full iritis episode was thus averted!
Many readers are wondering just how I obtained antibiotics. Some were from veterinary supply stores, others from foreign pharmacies I found on the internet, but many were purchased across the border in Tijuana, Mexico. In their Farmacias, I was like a kid in a candy store! I bought everything that could be taken oral route and was inexpensive enough! I had no particular list with me, so I was experimenting. Oral penicillan, erythromycin, and many others! It takes four days to evaluate an antibiotic; I spent many weeks on evaluations. Once I came upon the formulation of cycles of bactericidal within a primary regimen of bacteriostatic, I too precaution to note the date codes or lot of each antibiotic and kept aside a portion of those which worked, just to compare in the event that any lot was ineffective. In two years I found only one lot of tetracycline that proved ineffective. Taking antibiotics without a prescription is admittedly irresponsible, but I had given the medical community over 20 years by then and I had taken their poisons and only got much worse: I refused to allow the medical establishment to stand in my way of proper treatment. This is not an uncommon story and nothing dramatic like â€œLorenzo's Oil.â€ Antibiotics are really miracle drugs and we are fortunate to have such a variety. It is a shame that macrophage therapy is not yet available, but I would certainly seek this option to further prove that Professor Ebringer's premise is correct; not that I need any further proof than I have already achieved for myself! During that time in Philippines, I could purchase most antibiotics without a prescription and I was able to have my ESR tested without a physician's order, so I experimented: My ESR was 18 and I began eating rice and even sampled a pizza then my pain levels crept up and my ESR measured 28. Upon fasting a week and maintaining a strict diet after that, my pain was greatly reduced and ESR returned to 19. During most of the time I had active disease my ESR was randomly measured in the high 40s and during extreme flares, over 100! And, certainly during that time, my inflammation was directly related to my diet. As of this writing 20 years later, my ESR remains between 4 and 9 and seems independent of my diet! The difference, I believe, is the many cycles of bactericidal agents during a 6 year very strict regimen, after which I am symptom-free--but not damage free! My Latin teacher said to us often â€œIf you cannot be a shining example, at least be a dire warning...â€ Friends, I AM that dire warning!
The above should not suffice for justification for anyone to try my methods; there is much more still to cover, but I wanted to provide my experiences as a background!
Any person with AS should easily be able to PROVE the FOOD CONNECTION by FASTING. Sure, you can PAY ANY PHYSICIAN to tell you what you want to hear, even LIE:
â€œAS is a slow yet progressive disease that will not cause DEATH!â€ (Smoking plus AS can KILL)
â€œTHERE IS NO DIET FOR ARTHRITIS!â€ (AS really is an arthritis and DIET IS EVERYTHING!)
â€œWe do not know the CAUSE of AS.â€ (hint: â€œWEâ€ is THEY)
â€œBiologic drugs can TREAT AS.â€ (hint: They treat SYMPTOMS; not the CAUSE)
EVENTUALLY, after all the noise, all the arguments, all the â€œexpertâ€ opinions, you are left aloneâ€”but NOT ALONEâ€”you sill have the COMPANION; â€œaloneâ€ but with your ankylosing spondylitis! Sit down, get up and LEAVE it behind?! Let the din of this world pass and YOU DECIDE which day you will get healthy again! YOU DECIDE WHEN to take back YOUR LIFE from this thief! One more mri won't demonstrate your pain, another rheumatologist won't solve the problem; not one in a hundred understand these concepts, and can only pretend to treat us using drugs! What are YOU going to do? Do You need PROOF?!! Here it is: STOP EATING! Drink only WATER. Here is my fasting diary:
DAY 1: Water only breakfast lunch and dinner water for snacks; reading for pleasure instead of food.
DAY 2: Tongue is coated white, brush teeth and tongue. Slight headache middle of day, keep on-
DAY 3: Brushing tongue again, headache all day, gnawing hunger unrelenting shouting at me like someone inside me trying to get me to eat! I've banked 2 days in my health bank; I don't want to lose interest on my hard work! GIVE ME THE STRENGTH TO CONTINUE!
DAY 4: Hump over headache mostly gone, gnawing less but still uncomfortable. WATER WATER, COLD with ice, warm with comfort pretend it is tea!
DAY 5: Still white coating in mouth but not too much. How hungry can a person get? Maybe this is survivable after all--
DAY 6: I dreamt of eating FOOD last night! I thought I CHEATED and awoke ashamed! Then realized it was just a DREAM!!! Excellent, I only need to finish this day out and I am HOME!
DAY 7: BREAKFAST finally! Scrambled eggs and vegetable juice. NOTHING WITH SUGAR and avoiding starches. I will eat a salad and enjoy a pain-free life taking 20 teaspoonfuls of EVOO!!
DAY 8: NO AS SYMPTOMS, but I have a round trip ticket to Asville; all I have to do is consume some really bad starches and I will be back in the CLUB!
USUALLY, because I was working, I began my fasts on Thursdays so that my lowest energy day would be Sunday; by Monday I would have a resurgence of energy to carry me through the rest of the week. I was in full ketosis then, and also IMPORTANT: Diet-induced HYPOGLYCEMIA; this is the reason for NO SUGAR when breaking the fast! If I don't force myself to drink at least 8 glasses of water daily, I get dehydrated.
I did many return trips until I learned about the NO STARCH DIET and Klebsiella pneumoniae!
But I was CERTAINLY CONVINCED about DIET for many years before that enlightenment.
More about FASTING:
Some famous (and infamous) fasts
Moses 40 days/40 days
Pythagoras 40 days
INCENTIVE: Mental clarity
Socrates 10 days (repeated)
INCENTIVE: Mental clarity
Jesus 40 days
St. Patrick 40 days
INCENTIVE: Lenten season
The Donner Party 55 days (several within group abstained from all sources of food)
INCENTIVE: Forced isolation; extreme environment
Dr. Henry S. Tanner 42 days
INCENTIVE: General health/publicity
William H. Hay, MD (and patients) many times >10 days
INCENTIVE: Restoration of health (Brightâ€™s Disease and patientsâ€™ appendicitis)
Professor Arnold Ehret 49 days (several times >40 days)
INCENTIVE: General health/publicity to educate physicians
Bernarr McFadden >40 days repeated
INCENTIVE: General health
Upton Sinclair 30 days (nonconsecutive)
INCENTIVE: General health
M. K. Gandhi many fasts >14 days
INCENTIVE: Indian independence/Indian unity
Dr. Otto Buchinger (>100 days juice fasting; many repeated >14 days)
INCENTIVE: Restoration of health (arthritis)
Dr. Max O. Garten 28 days (myriad more times >14 days)
INCENTIVE: Restoration of health (angina)
Old Christians Club Uruguayan Rugby team: 10 days before eating anyone*
INCENTIVE: Forced isolation in extreme environment
Dick Gregory 45 days (288# before many fasts; 97# after longest)
INCENTIVE: Vietnam conflict; later, 1000 days juices only
INCENTIVE: Michael Jacksonâ€™s plight and/or lymphoma
Bobby Sands (& 9 other protesters) 66 days (optic nerve destroyed day 61; death day 66)
INCENTIVE: N. Irelandâ€™s independence/treatment of prisoners
David Blane 44 days
INCENTIVE: Money ($5M) and publicity
Alex 28 days
David Blane, Jeremy Ward, professor of respiratory cell physiology at Kings College, London, is quoted as saying: â€œI think he is a complete idiot. There are enough starving people in the world. For someone to starve themself[sic] as a publicity stunt - I don't think morally it is something which you should do for glamour or glory or money.â€
*These entries are provided, not for any shock value, but to emphasize that our environment during the fast is very important, but so is some rudimentary knowledge about the capacity of the body to endure, even in extreme situations. Had they known more about fasting, perhaps they would not have felt the need to resort to the food source, although I do not claim they could have abstained and lived. Some time after their ordeal, a lady recognized one of the Rugby team members while riding on a bus, and thought he looked too healthy, with the speculation that his brief dietary folly gave him that special â€˜something.â€™ It was probably the fastâ€”more than the foodâ€”that provided that measure of rejuvenation.
Another dietary maneuver which took down any flare for me:
The Edgar Cayce Three Day Apple Diet
I have done the apple diet many times, in season. I drink apple juice instead of coffee (Iâ€™m not a coffee drinker).
Many apples are retained in cold storage, and I would avoid these; test for iodine content before starting the regimen. To be sure, use no green apples, but most red apples are fine and I cannot make the distinction here in the North West (California) between early Jenetting and other varieties; I get down to the LOCAL apple stand right when they come off the trees!
Be sure to have the extra-virgin cold-pressed olive oil ready on day three. At first I was not able to drink all four ounces, but I pace myself now and can drink the total over about five or six hoursâ€”still eating apples and drinking the juice or water.
It is best to go light on day four, and I do not eat too much raw food, but might have eggs, tofu, or some canned fruit unless I can fast and then have V-8 vegetable combination juice (preferred) on the next day, along with cooked vegetables; no fruit on that day, but plenty of vegetable juices and especially celery juice if there is edema.
Cherries or Blueberries Monodiet
Just like the Edgar Cayce Apple Diet, I have several times used cherries when apples were out of season and cherries were in, and believe that blueberries might work as wellâ€”but I did not try them when my AS was active.
My friend, Dr. Max Garten, wrote a chapter on fasting in his book â€œCivilized Diseases and Their Circumvention.â€ I have reproduced this in my dropbox AS online Guide1112:https://www.dropbox.com/s/mh3lrsm8208glge/ASonlineGUIDE1112.pdf
Avoiding Severe Starch-Withdrawal Pangs
To help avoid or minimize starch withdrawals:
One of the best ways to treat starch withdrawals is to use the free-form amino acid glutamine, along with unsweetened concord grape juice: Three times per day (between meals is best) 6-8oz grape juice and 500mg (1,500mg total daily) of non-starchy glutamine pill.
Other of the free-form amino acids can help very much, like phenylalanine (500mg-1.5g/day), tyrosine (500mg-1g daily), and methionine (500mg-2g daily). These are of course protein bits that should be widely available in our foods, but to get the amounts we really need for these purposes, it often requires eating too much and too many foods of which we are less fond.
Starch withdrawals can cause fatigue, depression, and confusion. It is important to take eat enough fruits for the sugars and never be without raisins and almonds; this combination in particular is very filling and helpful. Raw almonds are best and some people early in their NSD experience cannot tolerate the almond skins, so beware.
Chapter 3: Speculations on the Activities of AS (stream of consciousness)
I began having severe leg pains when I was 20 years old. These grew into what could be called â€œchronic sciatica,â€ and within a couple of years this escalated into â€œlumbago,â€ costochondritis, and phantom pains all over including constant psoriatic episodes. Until I discovered fasting, I only noticed a pattern that I would later link with diet and lifestyle. Other related symptoms crept up over the eight years before diagnosis, like asthma during a particularly high-pollen year. Doctors seemed to have no idea what was wrong with me, but eventually the one who diagnosed me using the newly discovered HLA B27 connection told me that his predecessors had suspected AS. Dr. Lemp was a brilliant man, but he told me that there is NO DIET for arthritis! He was wrong and I knew it, but just didn't know which foods were the culprits until years later.
In this regard, physicians practice â€œbenign neglectâ€ that assures damage will begin before diagnosis! Carol Sinclair, who had to address her very severe irritable bowel syndrome (IBS) with her strict diet has never been able to get an official diagnosis of AS despite being HLA B-27 positive; because of her diet, her SIJs never fused! The medical guilds must change not only diagnostic guidelines but obviously their treatment regimen! I will cover ways to â€œnuanceâ€ a diagnosis, taking advantage of the fact that AS is a systemic condition and begins showing up much earlier than expected. Several early indications I had were: Extreme â€œgrowing pains;â€ abnormal, screaming level pain that was transient of course. Annoying â€œcrepitus,â€ or very noisy joints. The act of raising my hand in 5th grade could cause a loud pop from my elbow that would echo throughout the classroom. Also, a certain degree of hypermobility. I was able to sit on the ground with legs out and touch both elbows to the ground alongside my knees. Some people with AS are initially diagnosed with Ehlers-Danlos they are so flexible. As a teen, I had swarms of pimples, many of which I am now convinced were due to a form of psoriasis, especially on my shoulders and chest, even behind ears! AS is a psoriatic spondyloarthropy and many of us get diagnosed before fusion of SIJs with â€œundifferentiated Spondyloarthropy;â€ UdiffSpA. Also many children with juvenile rheumatoid arthritis, JRA, actually have early onset AS. I had very severe allergies as a child, but I never made any connection to AS outside of the fact that I eventually got asthma, due to the AS certainly. Let's get patients diagnosed early enough to allow them to avoid permanent skeletal damageâ€”because we actually know how!
Inflammation might actually account for every aspect of this disease, albeit this is difficult to grasp because AS has myriad ways to torture! Cellular death occurs, which results in an inflammatory reaction and increased production of lymph and the lymphatic system becomes overburdened with waste removal. The inflammation surrounding the entire pelvis causes the sciatica and constant pain in the lower back and hips. Here I will attempt a simplified explanation, from my non-medical perspective of MOLECULAR MIMICRY, in relation to AS: Our bodies contain a variety of bacteria usually available to help us digest food, but also as a library within our immune system, to reference pathogens we have previously been exposed to. The Klebsiella pneumoniae germ** is a workhorse perfect for the break down of starches (debranching), and it is highly prolific in the modern gut because of a normally high-starch diet. Our bodies react to the presence of this pathogen by producing an immune component called an immunoglobulin (IgA-Kp), which proliferates in lymph as the primary immune system is within the gut. The key identifier of this pathogen is a series of amino acids called a hexamer and although the immune system helper cells identify the germ correctly, our IgA becomes misdirected and attaches to our own B27 rich cells because they have a similar amino acid sequence to the bacterium. Two adjacent attachments are required to attract a macrophage to the cell for destruction. This is the reason exercise is important; there is no heart to pump lymph even though we have about twice as much by volume as blood. It takes muscle activity to move lymph around and hopefully avoid too many attachments. During sleep, we cannot move correctly, so often awaken with pain and stiffness due to increased inflammation from remaining sedentary at night. Notice also that any point of injury also has increased lymph activity and AS will certainly be more active at these sites.
If seeking a diagnosis of AS or â€œPre-AS,â€ it might be wise to review some general symptoms that most peopleâ€”including doctorsâ€”overlook. I call it a way to â€œnuanceâ€ a self-diagnosis. AS is a systemic disease, even affecting muscle tissue and on average we are 10% weaker and possess about 15% less stamina compared with our peers. Muscle biopsies from patients with AS often show odd damage as if electrocution has taken place: Nuclei are migrated away from the cell centers to alongside the cell walls, certainly affecting normal function.* 
Do you have IBS/digestive issues?
Are the pains asymmetric or symmetrical?
Have you ever had iritis?Or
Are there ANY X-ray changes to or SIJ anomalies?
Do you awaken with 'morning stiffness' that relents upon hot shower or movement?
Are your pains cyclic or constant?
Do NSAIDs seem to relieve the pains?
Noisy joints (crepitus)?
Have you ever had some degree of hypermobility?
Any blood relatives diagnosed with chronic UC, AS, PsA, RA, or any chronic inflammatory disease?
When you eat, must you drink much more than 'normal' people?
Dry eyes (common conjunctivitis), parched oftenâ€”thirst?
Any common or intermittent psoriatic lesions--scaly or pustular?
Any 'sausage digits?' Toes?
Pain at your core; cannot turn at the waist without feeling like you have a cactus for a spine (lumbago).
Trouble getting up from a seated position? (lumbago)
Phantom or transient pains?
Ribcage pain, especially at sternum?
History of pneumonia or pleurisy?
Jaw pain or teeth not matching as they should?
Excessive dental caries?
Even several positive answers cannot be definitive, and it is not likely that anyone withAS will have experienced all of these symptoms, but these are just a few more of theindicators that people can use to determine whether they â€˜mightâ€™ have AS. More and more people seem to be HLA B27 negative, yet develop AS. However, fully half of the confirmed AS/B27 negative patients admitted to the London AS Middlesex Clinic, retested as B27 positive, so it is obvious that the inexpensive serological test that is commonly used is terribly flawed, producing way too many false negatives. It is no wonder that even physicians are confused about the meaningfulness of this test. The truth is quite simple, however, if positive it is almost certainly AS (because without indicative symptoms this test would not likely even be performed), but a negative result does not rule out AS.
In his â€œPerricone Prescription,â€ Dr. Nicholas Perricone observes that a primary cause of aging might be due to starch over consumption and in this context it might be instructive to note that, through a similar mechanism most collagens, not only B27 rich outer surface proteins, can be affected by this same process, albeit to a much reduced degree. A cell can be replaced a certain number of times before it loses the capacity to reproduce accurately, and degeneration occurs. The K. pneumoniae germ produces two enzymes which work on starches and one of these enzymes crossreacts with collagens, regardless of tissue type. Perricone writes â€œAs a physician, I am against sugary and starchy foods because they cause an inflammatory response in the bodyâ€”a reaction that's proven to accelerate aging and promote dangerous degenerative conditions and diseases.â€ Anything I write after this can only diminish his brilliant observations, soâ€”how many times can we reinvent this same wheel?
In my experience, I found that it is often the form of the starch as much as the fact. Edgar Cayce suggested to his biographer to eat the skins of potatoes and throw away the pulp! Potato starch is soluble and very active. Rice, not so much and I think about the particle size and just how the starch substrate is â€œseeded.â€ Understand, so many patients claim that they react to foods very quickly; much quicker than the digestive process â€œshouldâ€ allow! The particle size of the flour, by way of example, is so tiny that just a few germs can fit at most but in the environment, they will procreate and â€œbloomâ€ out of control easily. So the small bowel could very efficiently seed starch particles and these will make it down to the large intestine formed into a massive colloidal surface, fermenting these bacteria! Rice, when ingested as unrefined particles, forms a couple of thousand substrates, but that same amount of rice, when milled into a flour, will provide many millions of reactive surfaces for this germ to multiply upon! Starches that are fried might take longer to hydrolyze, but understand FRY OILS. Many oils are hydrophobic, but when denatured during frying process they become hydrophilic. The hydrophilic grease, laden with our nemesis bacterium, will stick to our digestive epithelium and certainly conduct bacteria into to any active lesions. And this brings me to say a word about Human Growth Hormone which has been demonstrated to have some positive effects upon AS patients, especially when used early enough! This is one reason I urge people to take a lot of EVOO. In fact the brilliant Dr. Gundry says the purpose of eating is to get enough EVOO into our bodies [concept paraphrased].
Human Growth Hormone (HGH), I believe, promotes healing in the gut, and the lesions that we got from various diseases even in childhood, heal much faster. Upon reaching our maximum height, our natural production of HGH drops precipitously almost immediately to 20% of previous amounts! I believe that it is no coincidence that the peak age of onset for men is immediately subsequent to this drop in HGH. It has been reported that HGH can help reduce AS symptoms if used early enough.
Another factor in gut health is smoking! It was shown that persons with Crohn's Disease were 400% more likely to be smokers than not. Professor Ebringer found that Crohn's Disease is caused by the same mechanism and same germ as AS. Something I knew instinctively from many years prior, as a young lady I knew was diagnosed with this, and she had many of my symptoms but got them will before I did, and she was a smoker and I always thought this was such a terrible thing. Smoking seems to make everything much worse. Years later, I put the pieces together and now believe that my mother had AS and her smoking actually killed her at age 42! Aortitis with smoking is nearly a death sentence.
To be clear about lesions in our digestive tract, when such a breach occurs, there is a greater chance that our gut contents will be exposed to our primary immune system through lymph ducts, and consider the proximity of these ducts to our very large joints and body core: The most common first and primary activity of AS!
Twins with B27: The one who got AS has a greater number of lesions in the gut or chose the wrong foods to eat while sick.
Chlamydia-Reactive, Salmonella-Reactive, Yersinia-Reactive, Shigella--Reactive Arthritides seem to have one thing in common: They cause terrible damage to the digestive tract and increase intestinal permeability. The long-term effects in some portion of people who have contracted these conditions might be that, because of the damage, the bowel contents can more easily trigger Klebsiella-Reactive Arthritis. Long after the initial infection has been treated successfully using antibiotics or just by the natural immune response of the body, the opportunistic bacterium K. pneumonia has taken over--in genetically susceptible individuals. Perhaps gradual onset of AS can be caused by C. albicans; many people with AS seem to also have candidiasis, which increases gut permeability, according to many sources. Sudden onset of AS, like after an automobile accident, can be explained to some extent by the fact that adrenaline will cause the digestive system to halt for a time, increasing the transit time of the food being digested which will geometrically increase the proliferation of our nemesis bacterium.
NSAIDs greatly accelerated my AS because I used the older, non-selective agents, especially Voltaren (diclofenac), which is very effective at reducing inflammation, but absolute murder, long-term! I did not take it with food or on a schedule, and once I developed the inevitable ulcers and bowel ulcerations, my condition rapidly deteriorated. I know this from plotting clusters of new symptoms; in the early days, before regular NSAID use, I would add new symptoms quite slowly, but upon starting these drugs, I had tight clusters of emerging symptoms. Before NSAIDs, I developed asthma, shin splints, costochondritis, SIJ fusion, thoracic pain, and hip bursitis. After I began taking the drugs, I quickly got knee edema, TMJ syndrome, kyphosis, iritis, adhesive capsulitis, neck fusion, kidney stones, tachycardia, and osteitis pubis! The doctors offered me another drug to combat the terrible action of the NSAIDS: Carafate. But by then I had decided that I would seek another approach.
Once, when producing only blood from defecating, I took a few handfuls of myrrh resin before falling asleep, and actually woke up, wondering whether that ancient remedy saved my life! I really believed that I might bleed to death. The myrrh helped with the ulcer pains, and I turned down the proton pump inhibitors offered in favor of supplementation and fasting. It took 11 days of fasting to eliminate the upper tract ulcers and another few days to clear the bowel ulcerations, along with aggressive supplementation and gut-friendly foods and herbs. But it was still too long until I would learn about the diet, so my way back to health was not so easy. I believe that a healthy mucosaâ€”that is food residues knitted together by various bacterial colonies can play a protective role in sealing lesions; making them dormant or less active.
Dr. Dean Edell once remarked that, if every cell that contains our own DNA were suddenly removed, there would still be a substantial image of ourselves remaining, due to all the creatures we host! Now I think of this, in the context of having small intestine bacterial overgrowth (SIBO), and the potential that this is fueled by lesions leaking into our bodies and the bacteria which survive is certainly our old nemesis K. pneumoniae and it can live on cellular waste and migrate anywhere! I picture my entire mesentery and outer covering of my small intestinal tract, crawling with this germ! It provides a constant source of AS activity by emitting a rather constant flux of inciting hexamers, or signature amino acid sequences. Certainly, the point is that, as we age, we accumulate more and more of these uninvited â€œguests,â€ and the bacterial colonies might expand well beyond expected limitations.
When AS first begins, the only source of pain is due to inflammation, but at some point, there is an intersection that forms a butterfly graph, where the pain of inflammation is matched by the pains of fusion, enthesitis, and stenosis. Imagine also disease activity begins in the gut and is strongly related to diet, but eventually the activity from the gut (â€œ...Crohn's-like microlesions,â€ and other sources of permeability) is perhaps matched by the continual flux of immune-exciting bacteria separating from the massive colonies. This snake is always coiled and ready to strike!
Perhaps the ASTHMA associated with my active AS would prove to be due to K. pneumoniae: In researching this germ, I found a paper where it was discovered that K. pneumoniae in fish caused cells proximal to the presence (infection?) of this germ to produce large amounts of histamine, and certain strains of K. pneumoniae also produced histamine in great quantities. I wondered whether we become accustomed to a certain level of histamine, just awaiting a trigger event like a food or extra load of certain pollens to incite the horrible asthmatic symptoms. My own case of asthma was triggered by pollen in certain heavy seasons, but also from Brazil or macadamia nuts! After a few months on the strict diet, I was casting about for things quick and safe to eat and found a jar of macadamias. I had a banana at the ready, also in case of symptoms (for the potassium to moderate the asthma), but I consumed a few of these then waited. A few more, then NO ASTHMA! Many active seasons came and went and my asthma has never returned! At times this condition was nearly totally debilitating, but once I lost my AS, the asthma went away as a bonus! Certainly, not every kind of asthma is the same, and in fact most types are linked with allergies. Also, very young children have asthma so expecting SIBO or any kind of large germ colonies would be folly; many patients seem to grow out of their asthma, instead of getting progressively worse with age.
Gastro Esophageal Reflux Disease GERD, is a common complaint for AS patients. I had this so bad that I thought I would get aspiration pneumonia! I would awaken with terrible burning in my lungs and try to hang upside down until it cleared. It is a terrible thing to endure, several times weekly. Once on the abx regimen, I stopped having GERD almost instantly. And I cannot account for this except to suggest an interpretation and it just might be naive and simplistic, but perhaps the presence of K. pneumoniae could deform the structure of the cardia and associated valve. Perhaps inflammation of the esophagus is also an important factor: The structure of the inside of this conduit seems to have a built in bias to keep foods from regurgitating. Imagine a spiral wrap of electrical tape and see in one direction it is easier to move your finger in one direction than the other. Now suppose that where there should be ridges of tape, inflammation distorts this structure so that the bias is lost. It is of course much better to let gravity do most of the work; do not retire too soon after any meal and digestive aids could also help also I did use apple cider vinegar diluted to about half with water and it seemed to help a little. It took about a month before this very annoying condition completely resolved.
Knee edema, water on the knee, was a very painful condition and got me down a few times, especially when I first started NSAIDs, BAM! Out of the blue a new symptom! I had been trying to ride a bicycle and that very simple act caused extreme swelling in my right knee. But my observation was that this excess lymph came from my right hip, and it eventually fell to my right ankle! Eventually I found out that a very old term called â€œmegacolonâ€ might be appropriate. My simple treatment is a very strange thing and perhaps I have some explanation. When the colon becomes inflamed, it has trouble disposing of waste lymph, so this lymph gets backed up and actually flows the wrong direction while inflammation and cell waste components proliferate. I did a series of enemas, starting with coffee and a retention enema of about 3g uncoated sulfazaline. Then a very strict diet concentrating on vegetables and their juices, and some enteric-coated oregano oil, glutamine and glycine, and myrrh in various resin dosages. Colon health improved and the knee stopped expanding, but that fluid stayed for too long; I wanted to have it aspirated, but could never find an orthopedist with open appointment, so I did hot and cold compresses, ace bandage wrapped, elevated, massage with peanut oil alternated days with castor oil and Edgar Cayce Palma Christi (castor oil packs strategically placed). It took several months for the lymph to dissipate and almost a full year for the sharp pain to relent, but after sticking to the diet and abx regimen, this never happened again. I had long before stopped using NSAIDs, but the colon damage was still plaguing me to some extent.
My Kidney Stones were renal calculi and the first several stones were rather large and very painful! My colleagues found me in a fetal position under a conference room desk late one Friday night. Kind enough to drive me to the hospital and waited for me, ruining their otherwise good evening! I could barely wait for that drip to deliver me from consciousness! Another bad experience when I was eating a flat of blood tangerines for many hours driving to visit my father 600 miles away one Christmas. I arrived for the party, but that night about 2:30 aM a stone reared its very ugly head. I was casting about for ideas thinking what my uncle, and old cowboy, might do in my situation: Horse, hat, .44 revolver (oh NO!), saddle, tobacco, whiskey (oh YEAH!). So I went to the booze cabinet and found a bottle of tequila and had about 5 shots then did something my uncle could not doâ€”I climbed into a warm tub and almost instantly fell asleep! Problem only delayed because when that stone finally worked its way out, I was really torn up to the point of protracted celibacy! I mean even thinking about peeing brought on considerable consternation. I found an old Chinese herbalist book and they described a concoction using walnuts but instead of mixing them with a ton of sugar, I began eating lots of walnuts and whenever I had a stone forming, all of my meals were walnuts. Upon further study, and fully contrary to the advice my dad's doctor had given him after his lithotripsy, I began supplementing with calcium, boron, copper, and magnesium and trying to stay out of inflammation. I believe that when in deep depletion of calcium and we begin using up bone stores and in this process, the calcium oxylate is formed. We can always have serum calcium measured, but do we know which direction it is going? Other tests are required for that. Yes, I ended up with severe osteoporosis that took several years to resolve with supplementation and exercise. The surgeon who performed my 20 hour radical osteotomy (my chin had been on my chest; 93 degree bend in spine) told me that â€œ...screwing in to your bone is like trying to screw into wet drywall!â€ He put me back together with a lot of bone paste and brackets and I have very little pain associated with this brilliant neurosurgeon's work!
This was not meant to be a syllabus of AS complications especially in any particular order; it has grown into something like this so I will clarify the order and fill in the blanks:
Childhood Incidence of Stomach Distress
Growing Pains, EXTREME
IBS (Irritable Bowel Syndrome; transient)
Pneumonia and Pleurisy
Sciatica, chronic and persistent By now, I knew it was some kind of disease
Ribcage Pain-Costochondritis This FINALLY went away after six months off abx and strict diet
Skeletal and Spine Disorders: X-ray observed squaring, Lipping, DDD, Spurs, DISH, Stenosis
Neuropathies and Raynaudâ€™s About this time the HLA B-27 connection with AS was identified
Muscle Weakness 8 years from knowing I had a disease to identification of AS here
Bursitis-Hips and Shoulders and adhesive capsulitis NSAIDs: Pandora's Box
Knee Edema (water-on-the-knee)*
GERD: GastroEsophageal Reflux Disease*
TemporoMandibular Joint Disorder (TMJ)*
Restless Leg Syndrome and Muscle Twitches*
SjÃ¶grenâ€™s (SICCA) Syndrome*
Ulcers and Digestive Problems*
ED (Erectile Dysfunction)*
Heel Spurs (plantar fasciitis)*
Osteoporosis-OPGL STOPPED NSAIDs
*I have described my own treatments and opinions on these conditions.
I do not have, but was worried about:
Cauda Equina Syndrome (CES)
Chronic Heart Complications CHF/Pericarditis
Other Treatments, Self-and-Medical, Not Mentioned Above*
Pseudarthrosis is the fracture of a surgically fused vertebrae, typically, however, it is the term that the orthopedist used to describe my spinal fracture which was really a break in my AS-fused spine; instead of a false joint, it was the fracture of my own syndesmophytes. The forced un-retirement of one of my vertebral joints.
OUCH! This hurts. In fact, pseudarthrosis hurts so much, it can make up for many years of a pain-free existence. You know that first set of dreams, just as we are falling to sleepâ€”the very first one where the skate board shoots out from under us or we are falling and then JERK back awake? Ok, that jerking did not just hurt, but it was beyond HELL! I made animal noises that would frighten the most hardened exorcist. I could not help it. I can and have taken a lot of pain in silence, but the broken back did me in and I sought relief by going in for epidurals. I found the best doctor and had transforaminal injections of 1cc depo-medrol at L1/L2 and it got me to sleep, finally! I fell asleep on the recovery chair the first time after the fluoroscope-guided needle was snaked into location. People worry â€œdoesnâ€™t that hurt?â€ Like they used to ask me about acupuncture, but I would do ANYTHING to get out of the pain from pseudarthrosis! Even an operation with Harrington rods made of titanium, expertly placed and the non-union finally healed. Then broke again four or five months later and I needed another epidural. This time, while they snaked that needle into place, I began feeling worse than you should feel and still be conscious, wondering WHY I was not passing out, but I was right on the edge of doing so, but just felt all over bad. My blood pressure had crashed and was reading about 41/18 and I was able to joke