Rheumatoid Arthritis

Karen 2007 USA

I live in Southern California and was diagnosed with Rheumatoid Arthritis at 33 years old. I grew up very healthy and active. I rarely got sick as a child. I was involved in softball, ballet and gymnastics in grade school. I was always the fastest in my class. In high school, I ran track, was senior class president, and was a cheerleader. This was not cheerleading for wimps– we made it a sport. I threw 100 lb+ girls up in the air and caught them; and I lifted them over my head in extensions and shoulder stands. I was strong and I worked out at the gym regularly. In college I taught aerobics. I was very healthy and nothing ever ached. I majored in Journalism/Public Relations and after college I worked in advertising. I then decided to go back to school and get my teaching credential. I taught high school English for two years. I got married in 2000. I received my Masters Degree in School Counseling in 2001. I had my first child, a boy, in 2001 and decided to stop teaching and became a stay-at-home mom. In September 2005, I had my second child, a girl. I was 32 years old. During both pregnancies I had hyperemesis gravidarum which means extreme nausea and vomiting during pregnancy. The OBGYN claimed it was hereditary and from excess hormones during pregnancy. I turned 33 in October 2005. In October and November of 2005, I had two root canals (I ruined my teeth from vomiting during pregnancy). My immune system was down because I had just had a baby (the immune system lowers as to not reject the fetus), I was getting very little sleep with a newborn, and I had just had two root canals, the perfect entrance for bacteria. In December 2005, the balls of my feet began to ache. By the beginning of January 2006, I knew something was wrong. Not only were my feet extremely stiff and achy (especially in the morning), but my hands began to hurt and I was so tired I could barely keep my eyes open. I saw a GP. He did several blood tests. He said I had a high rheumatoid factor and a positive IGG parvovirus test, but he didnt think I had rheumatoid arthritis. He asked if I had RA in my family. I said I did not. I did some investigating later and found out I had a great aunt with Scleroderma and three second cousins with RA. There are also a lot of allergies and asthma in my family, indicating a pattern of hypersensitive immune systems. (I always thought I was the lucky one in the family who didnt get allergies. It seems my allergies have just manifested themselves in a different manner.) About a week later, I was in extreme pain and I had read a lot about RA and knew that my symptoms matched. I referred myself to a local rheumatologist. I could not get in for a month. I called the rheumatologists office every day because my pain began to get worse and worse. I was having a lot of trouble functioning as a wife and mother. I also help my husband run his business, and I was falling behind in the paperwork. I couldnt even hold a pen to write properly anymore. The rheumatologists office finally called back and got me in early. The rheumatologist said it definitely looked like rheumatoid arthritis, but she needed to do blood work to be sure. She gave me a lab slip and made an appointment for me to come back in a month. She told me to take two Advil, three times a day in the meantime. The Advil did not touch the pain, but I kept taking it, just in case it was keeping a minor amount of inflammation down and preventing some damage. I was breastfeeding at the time and I knew I would have to wean soon to begin medications. I was heart broken. But I hated the thought of even taking Advil while breastfeeding. I was in so much pain by that time that a month seemed like eternity. My pain had spread to over 35 joints. I was having trouble lifting my newborn baby, opening jars, turning car keys, fastening infant seats, putting on my 4-year-olds socks, brushing my teeth, washing my hair, etc. I would call my husband home from work to change the babys diaper because I was unable to do it. My four year old watched way too much TV as I lay in bed most of the day. I felt like I was 33 years old going on 80. My mom told me about an arthritis conference at the local hospital given by a local rheumatologist. I went. I was in the room with mostly old people. I asked if the conference was for rheumatoid arthritis or osteoarthritis. The speaker said both. I asked a lot of questions when it came to the RA part of the conference. The rheumatologist/speaker asked if I had RA. I said I think so (I knew I did, but I had no diagnosis, yet). I spoke with him after the meeting. He said he would get me in to his office for an appointment the next day. I left the meeting knowing that I wanted early, aggressive treatment to prevent joint damage. Everything I had read on the internet seemed to echo that, as well. I went to see the 2nd rheumatologist the next day with no diagnosis. It was nearing the end of January 2006. He called up the lab that did the blood work for the other doctor. I signed a release, and they sent the labs to him. He said I definitely had rheumatoid arthritis. I knew I did, but it made me mad that the other doctor had gotten the same labs at her office, and was going to make me wait a month to find out. I had a high rheumatoid factor of 282. Which he said was quite high. And a CCP of 115, which he said is very specific to rheumatoid arthritis. There was no doubt in his mind that it was rheumatoid arthritis. He said we have to treat this aggressively so I could take care of my baby and function again. He was impressed with how much I knew about RA, and I hadnt even been diagnosed. He said you knew you had RA didnt you? I said yes, and I had been reading a lot about it. He sent me home with brochures and insert information from Enbrel, Humira and Remicade. He told me they all work basically in the same manner, and I could decide which I wanted to take. He could tell I was hesitant about the side effects of Methotrexate, so he said he would call my insurance company and get permission to surpass the Methotrexate and go straight to the biologics due to reproductive reasons. (Methotrexate can cause fertility problems. He told them I wanted to have more children, which I didnt, but he used it as an excuse.) I went home and read, read, read. I read all the pamphlets he gave me and as much as I could online. I went to the Arthritis Foundation website asking questions. Someone named Mom4 had mentioned antibiotic therapy and how it had healed her teenage daughter. I remembered somewhere along the line I had stumbled across a story on the internet about a man who had been cured of rheumatoid arthritis from a Dr. Brown who gave him Tetracycline. I didnt know anything about AP at the time. But seeing this second mention of antibiotics sparked my interest. I was extremely fatigued. I required at least 12 hours of sleep at night, and was still tired during the day. I was very depressed. I would cry every day, usually out of frustration because I could not undo my seat belt or put on my sons socks for school. Everything that I read said this disease was progressive, degenerative and crippling. I could not imagine it getting any worse than it was! I could not imagine living with this amount of pain, let alone having it get worse. Already I felt I could barely function. I could barely walk down the stairs in the morning. My shoulders felt like I had constant dead arms. I had shooting pains that shot from my wrists up my forearms. I could not bend most of my fingers. I couldnt come close to making a fist with either hand. It was as if my fingers were stuck straight. And a couple of times I had fallen asleep and a finger bent by mistake, when I awoke in the middle of the night it would be stuck bent. It was so scary and painful, and I had to force it straight with the other hand and it would pop really loud. The pain bounced around a lot in the beginning. One week I could not bend my thumb, two pointers, and pinkies; the next week it was five different fingers. The balls of my feet always ached. Several toes were usually involved, as well. My neck, at the base of my skull, became involved and it felt like I had a stiff neck constantly. My knee pain would come and go. The pain was always the worst in the morning. The stiffness did not seem to fade at all until about 1:00 in the afternoon. But the pain always remained, all day long. I had to hire a nanny to help with the kids in the mornings. I went to the Roadback.org board recommended by Mom4. I read and read. I contacted John M., as he was my local area contact. I told him I was considering starting Enbrel the following week. He e-mailed back that I had a choice to make. I could give antibiotics a try and possibly go into remission or get significantly better; or I could go on potentially harmful immune suppressors, which would usually eventually wear off and I would have to jump from one drug to the next. And what would happen if I ran out of drugs to try? He said there is hope in AP. With AP, I had the hope of getting better. With the other drugs, I was merely suppressing the symptoms, not getting to the root cause of the illness. Everything I read said that most of the damage occurred in the first couple years and that early aggressive treatment was the way to go to prevent that. I worried that I would become crippled in the meantime while trying AP. And what if AP did not work for me? I ordered the book The New Arthritis Breakthrough, started posting on the roadback board, and set up meetings with John M. and Maddie from the Roadback board. I wanted to meet real people. I wanted to see if it was really working for them. I wanted to see them make a FIST. I met with John and he explained much of the science behind the treatment. I met with Maddie the same day. She told me about her doctor and how her pastor had gone to him and had gotten well on antibiotics. I read the book and it made a lot of sense to me. It made much more sense than the conventional autoimmune wisdom which stated that: One random day my immune system just up and decided to attack my joints for no reason at all. I wanted antibiotics to work. I wanted to give them a try. But I was scared of joint damage. I finally came to the conclusion that I did not want to just suppress my pain and possibly prevent joint damage. I wanted to get well. I wanted my life back. I wanted to feel normal again. I would talk to my friends on the phone and hear them complain about needing to lose ten pounds or some other petty thing. I wanted to scream. Things that had seemed important before suddenly seemed very futile. I could not care less about weight or appearanceI just wanted to stop hurting and feel normal again. So many people take their health for granted. I had taken my health for granted. I knew that in the past I always tended to get side effects of medications and I thought I would probably be one of the 1% of people who got lymphoma, TB, or severe infection from the biologics. I knew I wanted to be alive to watch my kids grow up. I decided quality of life came second for me. If some of my joints were damaged along the way and I ended up in a wheelchair, then so be it. At least I would be able to watch my kids grow up from that wheelchair. We have a family friend who has MS and she is in a wheel chair. She is a wonderful mom, active in her church and has many friends. I decided being able-bodied was not the most important thing in the world. I knew I risked joint damage while waiting for the medication to work. But it was not like I was NOT going to be treating my RA; I would be treating my RA with an American College of Rheumatology approved DMARD. I decided to try the antibiotic protocol. It was the best decision I have ever made. I told everyone I knew about my RA in hopes that I might learn something from them. I had a lot of people praying for me. A mom at my sons preschool told me about Juice+, so I decided I would start on that. Another friend told me about Mangosteen Juice, so I added that as well. I figured anything made of fruit and vegetables and all natural couldnt hurt. I went to see Maddies doctors in Riverside, about 2 ½ hours away from where I live. I called my other rheumatologist on the way to Riverside and said I would not be starting Enbrel the next day; and that I had decided to try antibiotic therapy instead. I told him I was going to this doctor in Riverside. He said he could prescribe antibiotics for me, but he didnt think they would do much. I said I wanted a doctor who was experienced in the antibiotic protocol. I met with one of the two AP rheumatologists in the Riverside office. He was kind, empathetic, and explained the disease well. He took my history, blood work and labs. I was expecting to leave there with a prescription for Minocycline, but he said I would have to come back in a month and meet with the other doctor there who would go over my labs and decide my course of treatment. I begged for him to give me antibiotics. I didnt want to put treatment off any longer! He said he would check my labs in a few days, and if my histone lab was normal, he would call in a prescription for me. Well, I called a few days later and my histone level was high. Histone suggests Lupus tendencies. Since drug-induced Lupus is a side effect of Minocycline, he would not prescribe it and I would have to wait a month to see the other doctor. It had been two months since my symptoms began, and I did not want to put off treatment any longer. I had read that if you get treatment within the first three months of disease onset, you had a better chance of responding to treatment and preventing damage. It was a LONG month. I was very depressed and the pain got worse every day. It seemed every day a new joint was involved. I finally saw the head rheumatologist in Riverside at the beginning of April. He was soft-spoken, intelligent and compassionate. He decided to put me on Zithromax– 500 mg, 2 times a week. Within 1-2 months of being on Zithromax, the depression and fatigue had disappeared. Within 3 months, I felt 60% better. Today, I have been on Zithromax for ten months. I am 98% back to my normal self. I have only one finger that will not bend all the way into a fist (it is about an inch away). My rheumatoid factor has dropped from 282 to 28 and my CCP has dropped from it’s all-time high of 153 to 55. My sed rate is 1.0 and my CRP is .3. I walk two miles a day. My feet, neck, knees, ankles, and shoulders do not hurt at all! It is a miracle! I thank God, Dr. Thomas McPherson Brown, Henry Scammell, The Road Back Foundation, Mom4, John M., Maddie, and everyone who has helped me on the roadback.org bulletin board for leading me to this miraculous treatment. I am truly on the road back to health and wellness. This is what I take: 500 mg Azitromycin, 2x a week Juice+ — double the normal dosage B12 B6 L-Lysine Candibactin (herbal for yeast) Mangosteen Juice3 oz/day Ultra Flora IB Probiotics2 a day

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