In 2011 I was diagnosed with a UTI caused by E coli. A course of ABX and I was better for about two months. Over the next six months I had all the symptoms of a UTI 3 more times, but despite labs with Culture and Sensitivity, I was found not to have a UTI. About this same time my feet, ankles and knees hurt so badly when I would first get up, it would take about 50 feet to move somewhat comfortably. I requested to go to a kidney doctor as now I was also having edema in bilateral arms, wrists and ankles. I was also starting to have low grade fevers (99.8-100.7) several times a day with fever blisters. Nephrologist ran many tests and found me to be critically low on Vit D (I trained horses in the Arizona sun 5 days a week with no sunscreen) and that also I had an estradiol level of less than 0.1. WBCs were 4200, and platelets were unable to be counted.
I began taking oral Vit D. But all of the other symptoms continually got worse. The pain in my joints worked it’s way to include my hips and lower back, wrists and hands.
I have 6-8 UTIs a year, but am always negative for any bacteria on testing. With the “UTI’s” I also started having so much joint pain throughout my body that I could only sleep 3-4 hours a night. This pain would improve within a half hour of activity but during the times when I felt like I had a UTI, if I sat for two minutes or longer, the pain would be as bad in my ankles, knees, hips, wrists and hands, as if I had just gotten up. My slight fevers 6-8 times a day became drenching sweats day and night that would come every 5-10 minutes, 24 hours a day. Ibuprofen did nothing but Tylenol helped about ten percent with the drenching sweats. Then I started getting bruises all over my body. My pressures ran 90’s over 50’s and my heartrate has increased from 60-70’s to 105-120’s. I found last year that a round of Levaquan and 40mg of prednisone daily literally changed my life. ALL of my pain went away, and the “UTI” did too. I have had five rounds of Cipro and prednisone this year. Each time I did NOT have bacteria in my urine despite having the symptoms. Each time the excruciating and debilitating pain now in my entire body, has gone away. The bruises disappeared and my heart rate drops to 80’s-90’s. My pressures go to 110-120’s over 70-80’s. My wbc’s also, for the fist time in four years, were the mid 6000’s instead of 3800-4000. My platelets actually went up to 165,000 instead of 135,000. In fact all of my neutrophils increased instead of being very depleted. And best yet, those drenching sweats day and night every 5-10 minutes, we’re gone!
But it all came back 3 weeks post last ABX dose. I have been to two Rheumatologists this fall. The first one got an MRI of my SI joints and found that there was no sacroilitis but rather severe osteoarthritis with severe degeneration in both joints. He also found I was HLA b27 positive. I am negative for the rheumatoid factor, as well as Lyme, HIV, Chlamydia, the list goes on and on. I have had CTs of my entire torso. Nothing found in KUB, heart, lungs. Both my father and my uncle had Ankylosing Spondylitis. This doc said I had neither AS or Reactive Arthritis. I went to another. Even though I told him that I have NO pain in my muscles, only my joints, and that I keep having symptoms of UTI, drenching sweats, exhaustion, and the near inability to move (my hip and knee were hurting so badly I could barely hobble at my appointment) AND that antibiotics definitely REALLY helped improve these symptoms, he told me I had Fibromyalgia. And he also thought I had an irritable bladder? On this day my wrists were swollen, but he told me I had no signs of inflammation in any of my joints.
I am 5’7” and 160 pounds. Despite this horrible pain that has now gone on for years, and the exhaustion that goes with not sleeping or being able to rest, I force myself to be active with my 13 horses and ranch. My inflammatory markers are never high, but this summer when I was covered with bruises, my drenching sweats were as bad as ever, my nails were almost peeling off, over half of my hair fell out in a month and so on, my C-Reactive Protein was 1.8.
This doctor told me that it was due to my BMI. I asked “are you saying that I am so fat, that it has elevated my inflammatory markers?” And he said “Yes”
When all was said and done, and since I wouldn’t accept the diagnosis of Fibromyalgia, as he couldn’t explain why the ABX and prednisone caused such a tremendous improvement in symptoms, (except to say he thought it was a placebo effect) he told me to go to the Mayo Clinic. He said they would be happy to take all of my money and run as many tests as they could, for anything and everything possible, but to be forewarned. To not expect the Mayo doctors to be impressed by labs that used to be 260-290 platelets and now 130-135. And also they would not care that my WBCs used to run in the 6000’s and now are around 3800 when I am sick.
So, please. Any ideas as to what is wrong with me? Whatever this is, it has already stolen a big part of my life over the last 4-5 years, as it has continued to get worse and worse.