And It's About Time There Was Some Support For Cushing's!
I began having cardiac problems out of the blue this past January. My heart would race to 200 bpm. In February, I went to a neurologist who discovered a 5 mm pituitary tumor. He sent me to an endo who discovered elevated urine cortisol, about 3 times higher than normal. In March, I began experiencing swelling and pain on the left side of my neck, etiology unknown. This symptom would become relevant later. In April, I had the tumor removed. It was supposed to "cure" me and be a cake walk. It turned into living hell.
After the surgery, I continued to rapidly gain weight. I had muscle pain so bad I couldn't walk. I developed strange collections of fluid, especially in the back of my legs. I had electrical stroke or seizure like episodes on the left side of my head and neck. I also discovered that I had not been adequately tested before my surgery for Cushing's. I did not have a presurgery dex test nor did I have a presurgery ACTH.
After seeing numerous doctors here in Florida, I went to the Mayo Clinic in Rochester in July. By this time I was also having trouble with my left arm and back pain. Dr. Young dynamically tested me and concluded I did not have Cushing's. He even administered the 3 day dex / crh test. Mayo did not figure out what was wrong but they told me what wasn't.
I returned home with no reason for my illness but I was convinced I did not have Cushing's. In the meanwhile, the left side of my neck continued to swell. My left stern muscle had become so hyperactive that it caused the right side to atrophy. So much so that it is clearly visible. This was puzzling to everyone because the nerve has normal function.
I convinced my local ENT to send me to an Infectious Disease doctor. During all my research, I discovered that animals with parasites have elevated cortisol. To my knowledge, there hasn't been any research on this regarding humans. My theory is, if it can happen to them, why not us?
The Infectious Disease doctor ran 3 tests, 2 were negative. The Filaria Antibody had a positive result thought to be from a cross reaction. My neck continued to get worse. 2 MRI's w & w/o contrast, 3 months apart revealed larger muscle of left side of neck, muscle atrophy on right. No tumor or mass. It was going to be very difficult if it came down to a biopsy. ENT's don't like to go outside the box.
The ID doctor concluded that I have a rare disease and recommended I see a tropical medicine doctor because I had went to Okinawa, Japan last year. Furthermore, I recalled having the "flu" a week after my return to the US.
After an exhaustive search for a tropical medicine doctor, I found one an hour away. He did something the other 39 doctors didn't do. He listened to me. I recalled the flu like illness after my return. He concluded at the end of our visit that I have Lyme Disease. He was right. Fortunately, he began treatment immediately. My Western Blot test from Imugen Labs (800-246-8436) was positive and so was the Lyme Urine Antigen from IGenex (800-832-3200). These are the best labs in our country for this kind of testing.
I have most likely been infected with a strain of Borrelia called "B. garinii." The ELISA test came back with a false negative because it tests only for a protein called OspA and B. garinii is OspC. The urine antigen test at IGenex,tests for OspA and OspC.
On the 3rd day of Doxycycline, a miracle happened. I woke, my feet hit the floor and there was no pain. I was pain free for the first time in 6 months. My symptoms have continued to ease.
I am nearing the end of my 3rd week on Doxycycline. I am in the process of switching to IV Rocephin for 6 weeks. I am hoping for a complete cure. Another amazing thing happened. While I was researching Lyme Disease in Japan, a microbiologist offered to help. Today, we sent him a blood sample all the way to Japan; FedEx and frozen. Excellence comes in all forms and miracles when you least expect one.
I am shocked at how this has turned out, I really believed for months that I had Cushing's. Cushing's didn't explain many of my symptoms such as the strange swelling and restless leg syndrome. The neck swelling and intense pain. It did explain the thinning hair. I believe my body hyper-reacted to the elevated cortisol and that's why I gained weight. Most Lyme infected people lose weight but every now and then there is the rare exception.
I thank you all from the bottom of my heart for your support and encouragement. There were many, many sleepless nights spent right here on this site, trying to keep my sanity and not lose hope.
This site brought Ann and I together at the Mayo Clinic. She is a wonderful person and will be a brilliant physician. Her quality care, knowledge and willingness to question the status quo will greatly benefit the medical community.
Melody, the miracle you said would happen did. We will know in 6 weeks how this shakes out but I am off to a great start. I have been warned that I may become very ill during treatment, this is the bacteria dying. It creates a toxic effect called Herx Reaction. I am going to combine western medicine with holistic methods along with my spiritual beliefs to heal.
I'm sharing my story in hopes that it will inspire you not to give up. Ever. I don't have Cushing's but this is where I belong, with the people who have been with me through the worst of times.
Jean Ann's photos. Click any thumbnail to view the larger image.