Thank you for sharing your stories and experiences for all of us to learn from.
Nine years ago, it was the Friday before a football game in Northern Indiana and a few of my friends came into town. We went dancing late into the night. The next day we woke up, made breakfast, and hung out until the tailgating started. A couple hours after getting up, my knees started hurting. Even though I was sitting, the longer I sat or rested, the more they hurt. At first I thought it was just from our night of dancing, but then my ankles and knees began to swell. My friends headed to tailgating and I assured them I'd be right behind them. I then went to urgent care. The nurse said she'd never seen anyone with such swollen ankles under sixty before (I was twenty). I got a prescription for steroids and painkillers, which helped the problem significantly. For the next year, every two weeks, I'd return to urgent care where they'd prescribe more steroids and painkillers. None of the NSAIDS worked. The steroids often worked, but steroids aren't good for you- especially long term. The painkillers were awful and I'd lose time staring at walls. The painkillers never helped with the pain and all my dreams were of home invaders breaking my knees and ankles. The doctors told me I couldn't ride my horse anymore as I wouldn't feel if I hurt myself; the barn had been my life. Sometimes I couldn't even stand on my own and I even started using a cane. The pain was ever-present. I started having rashes all over my body. I'd already been hypo-thyroid, but my thyroid stopped working at all. My rheumatoid factor would be high, but I'd never test positive for RA or lupus or mono. I often had a fever and went on augmentin or other Z-pack style things once a month for a regularly positive strep test. The urgent care doctors repeatedly called the local rheumatologist, urging him to bump me up his waitlist.
When I finally got in to see the rheumatologist, he said it wasn't worth figuring out what I had as there were so many options. He claimed eventually it would go away. My parents fought for a lyme test, but he was hesitant. They continued to push and eventually I had an ELISA, which came back negative. My parents had to assist me (physically) through my last semester of college and I went back home to Tennessee where, after a year, my symptoms started to fade on their own.
I often had chronic knee pain. My immune system sucked and I'd get every cold that came by. By December 2013, I could no longer breath through my nose. I had never had an allergic reaction to medicine before, but had full anaphylactic shock to an allergy medicine. They performed a sinus surgery, but my nose never healed and remained swollen. I had staph for over a year after that surgery and was regularly circled through different antibiotics. At the same time, my PCOS cyst started to enlarge, so I had a laparoscopy where they removed my grapefruit-sized cyst. I started passing out after eating. They briefly put me on a ketogenic diet, which made me feel better, but I was so sick of the meat and cheese. I'd always been anemic and it was not something my pescetarian upbringing was used to. I'd always had headaches, but once I'd had the sinus surgery, I started to get intense barometric pressure headaches where I could barely move. I continued to have random rashes that would come and go. Some were itchy, some were not. Some covered me head to toe and some were just on my torso. Some were striated while others were bright red and speckled. I was tested with the ELISA a few more times. Always negative. Also negative for lupus, RA, and fybro. I was tested repeatedly for celiacs, but came back fine. My white cell count would sporadically spike.
One day I woke up itchy, but no rash and it never stopped. I'd even scratch in my sleep. I had developed a severe milk allergy over night. My family is Norwegian. My ancestors are literal dairy farmers. I avoided dairy products and took ceterizine daily. My lymphnodes swelled up by my armpit, in my neck, and between my thigh and crotch. It hurt to put on pants. The lymphnode behind the one under your chin that always swells when you'e sick got hard and stayed hard on the right side. I started to feel brain-foggy and was losing my memory. It would challenge me to have any recollection of the day before. I'd run into people from high school who would recall fond memories and I'd laugh along. I had no idea what they were talking about and barely recognized whether I'd ever met them before. I'd been brilliant at math, but sometimes stumbled over things I should know really well. It's so hard for me to grasp even the smallest number of memories from a time period. Often they're just gone.
I'd get these heat periods where I'd feel like I was burning up for hours at a time. I'd sleep with a wet towel on my pillow and cold water bottles from the fridge in my bed. My scalp would be hot to the touch and I'd often sweat no matter how cold it was or how many fans I had on.
My back started hurting. It started to hurt constantly, like my knees, and would stab when I sat down or got up. I got a stand up desk at work. I started using ice and heat pads. I went to a physical therapist twice a week. I got x-rays. I went to a different physical therapist. I got an MRI. At the chiropractor's office, they finally ran my first Western blot.
IgG P18 Ab Absent
IgG P23 Ab Absent
IgG P28 Ab Absent
IgG P30 Ab Absent
IgG P39 Ab Absent
IgG P41 Ab Absent
IgG P45 Ab Absent
IgG P58 Ab Absent
IgG P66 Ab Absent
IgG P93 Ab Absent
IgM P23 Ab Present A
IgM P39 Ab Present A
IgM P41 Ab Present A
Lyme IgG WB Neg Interp (A positive result would be if 5 of the following Borrelia-specific bands showed: 18, 23, 28, 30, 39, 41, 45, 58, 66, and 93)
Lyme IgM WB Positive (A positive result would be if 2 of the following bands showed: 23, 39, or 41)
I was thrilled. This was the first clue I'd had in a while. I immediately turned to google. My interpretation may be wrong, but my understanding is IgM usually showed only in the first few months of lyme disease?
I went to my GP doctor, but he said he was not familiar with this test as he was only used to the ELISA which said yes or no. I faxed the info to my rheumatologist, thinking I'd get an appointment or at least a call back to my messages about where to go next. The nurse called, saying it was a negative result as you'd need five positive bands to have lyme disease. No they didn't need to see me. No they had no recommendations on other doctors I should see.
If anyone could give me suggestions of a good doctor to see (please, please, please under United Healthcare), I don't care if I have to drive a few hours. This illness has taken my entire twenties from me. I don't want to keep getting worse. I want a day where it doesn't hurt to walk. I desperately don't want to lose my memories even further.
Thank you so much for your time, patience, and suggestions.