Story of Hope
Karen Niedbalski [lupus-dermatomyositis]
My purpose in writing this story is to discuss my autoimmune diseases and by telling my story hopefully offer you some inspiration. I am aware I can not use my Dr's name so I will refer to my antibiotic protocal Dr. as Dr. T.
I was diagnosed with Lupus in 1995 at the age of 48, I had seen seven doctors before this was concluded. Lupus is an autoimmune disease, one of about 80 known to the medical community. My symptoms started with lower back pain and terrible rashes all over my body, the ones on my head neck and chest would ooze and bleed. I had severe gottrons papules on my hands my head itched so bad I thought I would go crazy. Had difficulty swallowing and extreme sun sensitivity along with fatigue, sleep disturbances, dry eyes, hives, shingles, bronchitis, short term memory loss, flushing ears, leaky gut, fibromyalgia and sustained vintricular tackcyardia( rapid heart beat) My CPK (inflamation of the muscles and skin) was elevated to the point where I couldn't dress myself or drive the car as a result I went on medical leave from work. You might not have all but you will have many of the symptoms to one degree or another. I have also learned that stress produces cortisol and cortisol causes TH-2 cell overactivation the body goes "wacko". For some after a stressful situation an autoimmune disease may manifest. Now for my story.
My name is Karen Niedbalski at present I live in Summerfield, Fl. I had been working at an A.C. Delco General Motors facility in Elk grove Village, Illinois for 29 years. Then I got seriously ill. Some comments need to be made about my work place, there were 55 employees working at the entire warehouse and office, four very healthy women came down with very rare autiommune diseases.
MY friend Carol died from Lou Gehrigs disease at age 48, another friend Shirley died from scleroderma at age 63, my boss Diane age 44 and I are now diagnosed with lupus-dermaotmyositis and polymositis, the odds of this occuring are three million to one, we wanted the EPA (environmental protection agency) to examine the building but it had closed in 2001. It is now known that a combination of genetic factors and some type of environmental "triggers" can activate an autoimmune disease. As I stated in 1995 I was diagnosed with lupus I had been on prednisone and plaquenil and within a year I was in remission and stayed on a maintenance dose. Then after retiring and moving to Florida in 2001 I had severe flaring, my symproms were the same as the first flare only worse I wasn't responding to high doses of prednisone my rheumatologist incorporated imuran along with high doses of prednisone I would improve slightly but as soon as I started weening down on the prednisone my symptoms would worsen. This went on for a year and a half. My Rhumy suggested methotrexate and I flatly refused to take this drug, when I lived in Illinois I went to a support group and heard so many horror stories about this drug I couldn't make myself take it. My dermaotlogist suspected I had dermaotmyositis and did extensive blood work to determine I had dermatomyositis along with the lupus.
I continued to stay in touch with my boss Diane who was diagnosed with polymositis in 1998 her CPK was over 13,000 she was in the hospital getting 1000 mg. of I.V. prednisone and sent home to take 80 mg. of prednisone, methotrexate, imuran, arava you name it she tried it, after 2 years of toxic drugs her CPK was still 5,000. She was getting desperate A friend at work suggested antibiotic protocal and she tired it and with in 5 months her CPK was normal. Talk about a miracle! after my severe flaring and talking with Diane I decided to apply the antibiotic protocal to my own use.
The book the New Arthritis Breakthrough by Henry Scammell was a life saver and became my Bible and Liesl a friend I met on the internet who was in remission from dermatomyositis through using antibiotic protocal helped me get started. The next step was to find a DR. willing to apply the A.P. I found a father and son team in Lakeland Fl. they were well-versed in A.P. and put me on the Hallelujah diet (vegetarian diet) daily carrot juicing and chelation. Dr T. said he had never treated anyone so steroid dependent as me and because I was so sick he recommended the diet, juicing and chelation, his theory was to rebuild my diseased body cell by cell. Because I was flaring when I began A.P. I had to increase my prednisone from 30mg. to 60mg.and did so for 5 months. The turning point for me was when Dr. T. switched me from 50mg. prednisone to 60mg. Cortef my improvement started and at present I am taking 40mg. of Cortef (equivalent to 8mg. prednisone) and Minocin 100mg. twice a day every Mon. Wed. and Fri. since starting antibiotic protocal I have quit taking the following drugs- Prednisone, Imuran, Plaquenil, Paxil, Desyrel, Premarin and Fosamax.
I am so pleased with my remission and progress, don't get discouraged it took me 11 months to achieve this remission by faithfully following the antibiotic protocal and diet. My boss Diane achieved remission without the diet or juicing she also used the generic minocycline. I am convinced we are dealing with an infection and thats why we can achieve remission on low dose antibiotics. I still follow a vegetarian diet, carrot juicing and maintenance chelation, because I was on such high doses of prednisone for so long the ween off steroids will be slow. I am now able to incorporate regular dietary foods several times a week I also follow a daily regime of walking for 45 minutes and am even back on the golf course and bowling again. After being house bound for over 2 years due to extreme sun sensitivity you can imagine how happy and pleased I am. I do religiously take a very sufficient amount of vitamins and supplements.
So, to conclude my story I wish to express gratitude to Dr. Thomes Brown who set forth the theory and rationale which is a revolutionary procedure called antibiotic protocal, and to Henry Scammell for writing the book the New Arthritis Breakthrough. To Liesl my internet friend who was such an inspiration to me to start A.P. and mostly to Dr. T. for graciously and professionally leading me down the path to recovery and to my family and friends for their encouragement and support. And last but not least to my devoted husband Mike who has faithfully juiced my carrots every other day for over 2 years and never complained, hes always been there for me thru out this healing process. From the bottom of my heart thank you to everyone who had helped me get thru this difficult time. For those of you thinking about trying A.P. I hope this will inspire you. Feel free to ask questions my only regret is I didn't find A.P sooner and I could have avoided taking all the toxic drugs that your rheumatologist will encourage you to take.