KELLY, ankylosing spondylitis

My name is Kelly Ann Pritchard, I was born in 1949, and I live in Santa Barbara, California.

In 1987 or 88 I was diagnosed with ankylosing spondylitis after injuring my back pulling a pallet of frozen chickens to the back of an Albertson's deli, with the intention to turn them into fried chicken.

Before this accident happened I was pretty much your average healthy happy woman with one exception. During the years of 1970 - 72 I had screaming pain in my pelvis and the doctors thought I needed a hysterectomy and did that to me at age 21. After the surgery, which had been done out of state during a brief marriage, I returned home and to my regular doctor who told me the hysterectomy was not needed. So who knows. I wonder if the pain I felt then was the sacroiliac bone fusing to the pelvic bone on the right side. There was also fusing on my ribs and breast bone, with only a half an inch expansion when I breath as compared to the usual 2 inches on normal people. This is because my cartilage had hardened said the doctor.

After the chicken accident, I did not recover. I got sicker and sicker and sicker and Albertson's would not give me my job back. I sued them and they sent me to the top doctor they had, a Dr. Orem, in Salt Lake City Utah, to prove it was not their fault and I was not sick. The doctor took two days doing all kinds of tests and in the end asked me if I had heard of ankylosing spondylitis. Amazingly I had - he told me he suspected I had that and told me only two hospitals at that time did DNA testing and we sent off a blood sample. My SED rate was high, and x-rays had shown the fusing I mentioned. When the results came back the verdict was in,. I had ankylosing spondylitis, and the trauma of the injury had caused my immune system to kick in an attack on my body.

At the time I was living near my siblings in Utah. However I had grown up in Santa Barbara, and I read Norman Cousins book and wanted to come home, thinking my doctor here would give me the vitamin C intravenous treatment. Oh how wrong I was. I came home and almost died. Age wise, I turned 38 a couple of weeks after returning home. I did not respond well to the NSAIDs and steroids and refused to take them. Basically my theory was that I would have to be unconscious in some hospital before I would take those drugs. Often I was.

I had no income during this time and a well loved friend, John Shaw, who lives back east, helped me out by paying my rent and buying me food. I applied for SSI, and after almost a year it was approved before I had moved back home.

Living in a University town has its good side. I met some really great kids who helped to care for me. I believe now if you are too sick to care for yourself the universe will provide. Some of the college kids were great. They would take me for walks and bring me food and be my friend.

Anyway, about age 41 I was still very ill, and very weak and very tired. It was hard for me to walk "around the loop" which was the loop-shaped downtown area with stores and cafes on the outside of the loop, big parks with ponds, and amphitheaters and trees and ducks in the middle. Usually on an average day, the average citizen here walks the loop about 5 times a day. Whenever I ventured out alone, people were always threatening to call an ambulance after me. "Are you all right? And "You don't look so good, if ya don't mind my saying so " were daily comments I heard. It is not easy ditching an ambulance or concerned cops when you are slow moving.

The doctors were sick and tired of me being sick and tired and tried to force me to put down the codeine and pick up the methotrexate. This was during a time in American medical practice which says do not give people opiates - they may become addicted and God knows we can't be having any of that. Doctors and law makers united and passed a law stating you must ask a patient their level of pain and treat them accordingly. It was against the law to not treat pain with opiates. The government on the other hand were pushing Ibuprofen-based drugs for pain and not only will that stuff, in my opinion, eat up your tummy, and cause hemorrhaging in 1000s of Americans every year when given in high doses, I found it did not even begin to touch the pain. I said no.

They said I was a bad patient and did not want to treat me any more. I said I would go to my specialist Rheumy, Dr. Tim Spiegal, of the Sansum Medical Clinic, and do what ever he said. I was very tired of fighting at this point. It was very hard to walk, very hard to think, I was in constant screaming pain, and very tired of life. I had to give my pets away to a place who find homes for pets of people who are terminally ill. I became homeless. I had a music studio which is really a storage shed like the storage sheds you see all over the place, only with these you have 24 hour access - better than outdoors. After a few months to a year of being homeless, I finally qualified for HUD, which is a program where the government is your room mate, and pays two-thirds of your rent. So now I have been indoors for over 12 years.

Dr Speigal told me of a new treatment in Europe using antibiotics and offered me a choice of azulfidine or doxycycline. He refused the writing of a prescription to my general practitioner. My regular doctor said I could only have one of the drugs and both were antibiotics. She lied. I choose not to name her here. I chose the DMARD, the azulfidine, thinking it was an antibiotic and somehow got a bit better. As a close friend who is a doctor says, I got lucky.

After six months of being on the azulfidine (Sulfasalizine) someone gave me my first computer, I got online and I found the rheumatic.org people. I found out that I was taking a DMARD not an antibiotic. I switched doctors, switched to doxycycline and went into remission about six months later.

Due to all the down time and being so sick however, I lost my teeth. I had basically just spent the past six years in bed 20 hours a day if it was a good day. Because my teeth were in bad shape, they were a good host for a lot of chronic infection so now I have healthy gums which probably helps to keep various infections out of the body.

I want to take a minute and talk about how it felt to get well. Before the antibiotics I was really weak and tired and did not get out of bed much. When I started getting better, it was hard to raise my arms, it was hard to walk, I would get bursts of energy, and be able to walk the block to town. It all came slowly, but it did come. I bought a little motor scooter to get around on (the two wheeled kind). I applied to the Department of Rehabilitation to send me to school to learn a new career which I could do mostly sitting down.

After I went into remission I went back to school and got a Degree in Multimedia with a concentration in sound. I worked as a volunteer for Oprah Winfrey on her web site, and also at AOL. I also worked a little bit for Oxygen on a TV show called Trackers for some cash money. I then went to work for a news reporting agency for three years, but two years ago I quit working and went back to college. I know I am smart and with a BA I think I can make enough money to be able to afford to pay for my health care.

I continue to take the doxycycline and usually take 100 mg MWF. I also have developed GERD for which I take Protonix which works well and has left me symptom free from the GERD. I also take Xannax for panic attacks, Sinniquan to get deep levels of sleep so I am in less pain, Codeine for pain if I need it, Soma for muscle relaxation if I need it, Glucophage and Actos for the diabetes.

I drive a car, ride a bike, hoola hoop, juggle, belong to the YMCA, swim, hang in the hot tub, go on hikes, dance, shoot a lot of footage, edit it and make DVDs. My hobbies are genealogy research, filming musical acts, and reading message boards.

A couple of other points. I test negative for H. Pylori, my asthma went away with the antibiotics and before the antibiotics the doctors were talking about replacing a knee, but however the knee is fine now and I can squat and get up. I do have a little bit of a problem still getting in and out of the tub, and with getting up from the floor. I have to get up like a toddler does. That damage was already done before the antibiotics, however.

I have done well with the exception of surgery for a scar tissue-filled urethra which I had done a year ago and have recovered from. I quit smoking cigarettes for good over a year ago. After quitting for six months I picked them back up as I could not tell the difference between a dying kidney and wanting a cigarette really bad. Three weeks after the surgery, I put them down for good.

About that surgery - I got lucky as I have the welfare health insurance, Medicaid. When you call for an ambulance, like my friends did when the kidney went, we were at a mall and the ambulance will only take you to the closest hospital. This happened to be owned by some very rich Indian doctors who have all the latest medical toys and gadgets. They were pleased as punch to have a real live woman with AS in remission drop into their hands, and admitted me when they could have sent me down the hill to the welfare hospital. They invited in their other doctor friends for a friendly Saturday morning of "knock out the ankylosing spondylitis patient, fix her kidney, and check her out for hours". They saved my kidney and my life and I am eternally grateful.

I should also mention a member of that medical group was a Dr. Shuman Thacker who is a great admirer of Dr Franco and his works, and knows him as their offices are only about 40 miles apart and has met him at local rheumatology events. It was only good for me the good doctors were not unaware of the therapy I was on and how it works. They did micro surgery, got rid of the scar tissue, put a stint in for ten days, saved my kidney and gave me five days of constant intravenous antibiotics. They gave me a heavy dosage to take home as well. Unfortunately I was very ill and did not remember the name of that antibiotic. I slowly recovered with the help of nurses and friends who cared for me and fed me and shopped for me. I recovered in about two months back to remission status. The tube and the kidney continue to work a year later with no ill after effects.

I am older and weigh more so naturally I am not as active as I was before I got sick (I am also poorer). However I think I am as active as most people my age and am equal to them in things I do and the way I think.

I have fallen out of remission a few times. Most likely cause of this is new doctors who refuse to prescribe the antibiotic, but usually after I get sick they prescribe it fast enough. Other times are like when I had surgery last year or like now, when I broke my toe. My shoulders hurt, it is hard to type, but it is also summer vacation and I am a student and have nothing to do but rest for three months and feel better - which I have no doubt I will. I do not feel overly sick now, and the toe is half way healed so I think I will have done well.

I have no children, and live alone, but some of the college kids and people here in town treat me like family so that part is good. I have mostly had to take care of myself, but whenever I get real sick the universe (or the visiting nurse at least) provides people to care for me.

Back to the being poor part - I have not been able to afford to buy supplements, or have a very special diet. I do not drink alcohol and I gave up cigarettes over a year ago. I drink coffee, eat cheeseburgers, fish, berries, bread, cereal, what ever I can afford and is cheap. I am queen of the cheap food. For me, the difference was the doxycycline. Without it I would be dead. Every once in a while I run into someone who thinks I could not have survived and I get the double takes. Finally they approach me and are delighted to see that not only am I among the living, I thrive. I hope you do too.

I continue to see doctors about twice a month and my health continues to be monitored closely. The techs are always delighted with the results. I have respect from my doctors and they are very good to me. I cannot say if I would be healthier if I ate supplements and special diets. Probably so, but I can't afford them and I am doing very well for me. I am alive. I walk, drive, sing, eat, love life, care for a dog and a cat, and have a pretty normal life. I continue my college education in hopes that I can educate myself up into a high paying job bracket. I am smart and have a 3.75 GPA.

I am very thankful for the rheumatic.org site and all the people here who have been helpful to me and have babysat me in days gone by while I was reaching for remission. You're in my heart. I am hopeful if you or a loved one is distressed with ankylosing spondylitis or one of its cousin HLAB-27 positive diseases you will take heart. Miracles can happen.

Update: 03-11-08

Dear readers and seekers of treatment options and opinions: Hi again from me, Kelly Pritchard.

You know a funny thing happened on the way to remission. It has been a few years since I wrote my bio, and it is with humor that I look it over and see how stubborn I could be over things like diet and its effects on my body. Somehow I envision Ethel laughing at me with an "I told you so" look on her face. I became very ill last October, and my doctors were thinking that I had fallen out of remission and were at the ready to give me steroids and Enbrel. They did an x-ray of my back, and said it was normal. I said it canÕt be. I have bone fusion and that canÕt disappear. Well I guess I was wrong about that. The x-ray showed normal bones, no inflammation, and no fusion. I even grew my appendix back. Wow. Wonder if I could grow me a uterus again? Being poor and still on some of the government programs for health insurance I wondered if this were perhaps a healing of care rather than a healing of this disease. The doctorÕs feelings were hurt when I asked him that so I have come to accept the fact that I have been cured of AS. So, the good news is, I no longer have Ankylosing Spondylitis. My Rheumy, my general Doctor, and my specialists all agree it is gone. Even showed me the x-rays. I do have one problem, which is my spine is bent forward along the bra line, but the docs say that is mechanical, what ever that means and is unrelated to the AS. The doctors and specialists found my spine and all other bones are O.K. My rheumy, Dr. Speigal, said perhaps the antibiotics did cure me after all. I did notice I was the only patient so I donÕt know how the rest were doing. I was hopeful he would be happy to have a patient who has survived this horrible disease by following a treatment he recommended.

Other health issues for me are thus. When I got so sick about 6 months ago, I lost over 40 pounds in 2 months, and over all now, I have lost over 70 pounds. I take an injection twice daily of Byetta, a lizard spit product which makes diabetics lose weight and stabilize our blood sugars. When the doctors did all the tests, they found out that I am allergic to wheat and gluten. My entire stomach was covered in sores from consuming wheat, and I was unable to absorb food. So I was starving to death, seemed like and my tummy was in screaming pain. The doctors told me to lay off of the wheat and most of my remaining symptoms will most likely go away as well. I have a good doctor. He gave me 2 shots of vitamin B-12 over a month, so that sure helped the energy As far as I feel, my energy is coming back so I can keep the housework up a lot easier. I have my Bachelors of Arts in Liberal Studies and I am in Grad School while studying to be a teacher for grades K=8. I have two jobs besides school. I am a substitute teacher for the local school districts, and I am also sit on the board of directors for the Rec and Park district here in my home town. I have a Boston Terrier Dog who keeps me active, and I love PE at school because it has been a really long time since I have enjoyed sports. Regarding this healing, Did it come from prayer, or a miracle, or faith healers or living right or what, I donÕt know. I believe it came from the antibiotics. It was totally unexpected but I like being healthy again.

I do not understand it, but I think I accept it for what it is, and having mulled it over in my head for a few months, and contacting Chris about this turn of events, it also brought the pain of learning her daughter had lost her life after fighting the good fight. She is one of my heroes and I cannot think about this disease and treatment without remembering her before and after photos, one of her in the hospital so sick before the antibiotics and her all dressed up for the prom or some such Australian rite of passage gathering of young men and women in her age group. I canÕt explain it, but those photos gave me hope that my own energy could come back and I could be all right. Chris and her daughter are two of my guiding lights. She did not die in vain; she died for us who are also fighting for survival and for good health. She helped us to not be afraid, and since I can almost feel her presence at peace now that the pain and stiffness is gone. Another thing to think upon, to leave you with a happy hopeful thought. I had dinner recently with the doctor who is the head of the Direct Relief International, whose warehouse is right down the street by the train station. He told me he has been treating his African patients with Doxycycline at the same dose, 100 mgs MWF, as a prophylactic to keep the people from catching malaria from the skeeters. He says it is working and the people who are bit and who are on the doxy are not developing and dying from the malaria any more now that they are no longer using quinine for treatment.

I wish you all well. Feel free to email and let me know how you are doing. If you have tried to email me in the last year or so, you may have missed me as my email changed when AOL went public. Too many adds for me so I just use my school email address. I lost touch with a lot of you whom I have grown to love and wonder about.

Kelly Ann Pritchard
"Deep in the center of our beings is an infinite wealth of love"

If you have any questions please feel free to email me - I am at kpsb2@aol.com


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