2005 was one of the best years of my life and also one of the worst years of my life. One of the most joyful moments Id ever experienced came that spring with the birth of my first grandchildren, healthy boy/girl twins, but that joy was being overshadowed by some strange illness. After enjoying excellent health my first 53 years, being sick was uncharted territory for me. In the past Ive required little medical attention and been pleased with the care Id received, so I wasnt even that worried about being sick because I felt I had good doctors looking out for my best interests and after all, I always got better. This time was different. For the first time I really needed my doctors to figure out what was wrong with me and why I was getting worse (in other words – do their job), so when the best they could come up with was that I was overly anxious it became clear to me that I was going to have to become a super sleuth and try to figure this out for myself. I knew enough to say with 100% certainty that anxiety wasnt my problem and that anti-depressants werent the answer. At this point, crushing fatigue was my biggest complaint, but quickly followed by a string of unusual symptoms that seemed to fall under the auto-immune umbrella.
A friend suggested that I see her rheumatologist, the best one in town. After getting nowhere with my family doctor, internal medicine doctor, and endocrinologist, it was worth a shot. This doctor seemed nice and caring, but was reluctant to give any diagnosis for a very long time; all the while I had a rapidly progressing disease going untreated and was going down fast. By this time I had sudden onset Raynauds in my hands and feet, swollen and painful finger joints, and extreme carpal tunnel pain in both wrists. He ordered a large lab workup which was fairly unremarkable, although there was one marker for Scleroderma that was elevated, but one of the more obscure markers, which he overlooked. The deformities in my hands led him to do an MRI of both hands and the radiology report came back with the diagnosis of RA. Well, at least now I knew what I was fighting and would deal with it and get back to those precious grandbabies. I couldnt have been more wrong. After studying the menu of drugs this doctor was offering I just knew there had to be something better and went searching. It turned out to be my lucky day when I stumbled on the site for the Roadback Foundation and learned about using antibiotics for rheumatic disease. The whole auto-immune theory that a healthy body just starts attacking itself never made sense to me, but the fact that your body is fighting an infection and that dysregulates your immune system, made perfect sense to me.
The more I learned from people on the RBF board who were having great success using antibiotics, the angrier I got at my rheumy because this option wasnt even offered as an option. In the meantime, I started having more strange symptoms that were all leading to Scleroderma: tight skin on forehead and scalp, mouth getting smaller and drawn, small red spots, pin-prick sensations all over, muscle fibrosis on upper arms and large bands around upper thighs and knees and arms, very sore and tight neck, badly swollen knees, had to use two hands to turn the key in my ignition, Bells palsy, trouble rolling over in bed, chills and sweats, arm and leg hair disappeared, skin texture changed and became very slick, and major brain fog. Fatigue was getting worse and I was forced to take naps for the first time in my adult life, never feeling rested or feeling like I had the energy to do anything. Six months had passed between appointments so by the time I was talking to the rheumatologist again in December I had more symptoms and had become much sicker. Still, he was shying away from a diagnosis of Scleroderma&&..danced all around it, saying it sure could be, but could also be x, y, and z. After becoming totally frustrated and knowing I just wanted a prescription for Minocin, regardless of what he was calling it, I told him what I had found on the internet (doctors love that, I know), and I decided I felt more comfortable using antibiotics than the drug options hed offered. What followed next is the part I will never forget. He told me he didnt use antibiotics because they dont work, and that he was sorry that there were no good drugs for SD at this time, but he could help manage pain as things progressed. I left there in tears thinking he had just given me a death sentence and was willing to write me off. My pity party lasted about 10 minutes because there was no more time to waste.
I was on a mission to get a prescription a.s.a.p. for Minocin and I would stop at nothing to get it. As it turned out, it wasnt that difficult. After firing my rheumatologist, I printed the Physicians Protocol from the RBF site and presented it to my family doctor. I typed a cover page boiling down exactly what I was asking him to do for me&&..write the scripts for Minocin, and order labs to monitor. Once he saw the benign nature of the drug I was asking for, he was happy to help.
After about four months on brand name Minocin I started seeing small improvements, and after about a year I traveled to Iowa to see one of the best AP doctors in the country who confirmed the SD diagnosis (finally) and did a series of ten Clindamycin IVs. I saw more improvement, but then plateaued. We then added in a third antibiotic, Zithromycin, and saw still more improvements, but again hit another plateau. By this time, I started questioning if Lyme Disease could be involved because Id had over 20 tick bites in the last 5 years, all from my own wooded property, so it seemed like a reasonable thing to explore. Once again, I had no clue what I was stepping into, but I knew enough to know there was controversy surrounding Lyme Disease.
Just like before, I did my own research and took the bull by the horns. I found out which lab to use and ordered my own test kit, but needed a doctors signature, so I went back to my family doctor to ask for yet another favor. He told me, Kim, we dont have Lyme in Indiana, and I said, yeah, I know, but please just humor me here and sign my form. Long story short, he did, I tested positive, and then traveled to see a very experienced Lyme Literate Medical Doctor (LLMD) in Missouri where he said I also had two co-infections of Lyme: Babesia and Bartonella. After a year of Lyme treatment I am now in remission and off of all antibiotics. Most people stay on a low maintenance dose of antibiotics once they hit remission and I eventually may too, but for now this is working. My LLMD says that Lyme can mimic or cause ANY disease. We feel that was true in my case and that the Lyme came first and induced the Scleroderma, RA, Hashimotos, Sjogrens, Raynauds, and Im sure Im leaving something else out. He also assured me that in treating the Lyme we would be treating all the other auto-immune diseases. He was right.
Today, I am 90-95% better with only a few small patches of thickened skin and trying to get my thyroid/adrenals/pituitary functioning properly again. A couple of tools in my toolbox that helped tremendously were the use of enzymes (I use Neprinol) to dissolve fibrosis and improve circulation, and the second was frequent use of an infrared sauna to improve circulation and sweat out the debris from the dead bugs. My Raynauds is almost totally gone now and I firmly believe that if I had used the enzymes and sauna earlier on it wouldnt have taken five years to get better. My plan now is to be healthier than I was before I became sick by strengthening my immune system. During this process Ive also learned I have food allergies which may have allowed this to get so out of control in the first place. Now Im gluten, dairy and egg free. Hey, whatever it takes. Another valuable lesson Ive learned is to be your own health advocate and partner in your health care. Do your own research, read everything you can get your hands on, and trust your gut instincts.
Life is good. The 4 1/2-year old twins now have a new baby sister for grandma to spoil, and grandma is up to the task. Im back to working out regularly and rebuilding lost muscle. This summer I was able to do all of my own gardening again without hiring people to help me, Ive even been asked to be on the garden walk next year, but well see about that. Next up is getting back on the tennis court, a sport I dearly love, but had to give up when I got sick.
I owe a debt of gratitude to this wonderful organization and to the amazingly generous people on the RBF board that helped me through some dark days.
My job now is to pay it forward by volunteering on the RBF board and, hopefully, change the thinking of the doctors that told me antibiotics wouldnt work. How wrong they were!