At my first appointment with the Rheumetologist I voiced my concerns of neurological Lyme symptoms. The rheumetologist did a physical exam checking reflexes and strength. She felt that even though I had some neuro symptoms (like a chronic (5 month) headache, forgetfulness, trouble concentrating, chronic fatigue (yes that's why I'm always taking naps, really, I'm not lazy), and a depression and anxiety diagnosis) they weren't enough reason to do further neuro testing. She prescribed the month of Doxycycline and a bunch more pain medicine and sent me on my way. She scheduled a follow up for 3 weeks later. The next day I had the flare in symptoms when I stayed with my mom.
Fast forward 3 1/2 weeks. I went back in. The inflammation in my knee was down some from when it flared and the pain meds were keeping a good handle on the pain. However, my knee was still just as full of fluid, and by her own observation was worse than it was at my first appointment. I reiterated that my headaches/migraines and other neuro symptoms were also not improving and that, in fact, my lips, eye, cheek and ear had started twitching almost constantly. She felt that the twitching could be from the Prednisone I was on for the knee inflammation and suggested I wean off of it. She did an arthrocentisis (sucking fluid out of the knee with a syringe). She put the needle in and she had to push hard to get through the lining of the knee joint. It was extremely painful and I screamed when it popped through. I felt terrible but I couldn't help it. I cried the entire procedure. Every time she pulled back on the syringe I could feel it. Finally she stopped and unscrewed the syringe and left the needle in my knee. My knee had so much pressure the fluid flowed out onto the gauze so she let it drain until it stopped. That wasn't nearly as painful. After it stopped draining she injected a Novocaine/Cortisone solution and bandaged me up so it wouldn't drain back out. She told me if it didn't help by the following week that I should call and they would start IV antibiotics at that point. She left the room to call a volunteer to wheel me down to my car. She didn't realize I was still in the room when she came back and went in the dictation room across the hall. She started talking to another doctor about me. I heard her ask him if he'd heard me scream...at which point she laughed. I pretty much knew at that point I would probably be looking for a different doctor if I didn't get better.
A week passed and the swelling in my knee had gone down but wasn't significantly better and was still sore. My headaches had not gotten better at all. I called and let her know how I was doing and I felt at that point it was probably best to go ahead with the IV antibiotics. 5 hours later I still hadn't heard back so I called to find out what was going on. Apparently they felt because we hadn't met our $1000 deductible that I should try to stick it out on the Doxycycline for another month and hope it worked. She said I could chose but they were only going to do the IV antibiotics for 1 week because of the expense and the amount of coordination and work it takes them to set it all up. By this time it was after clinic hours so I told her I'd need to talk to Ryan about it and get back to her. She said they were going to be at an outreach clinic the next day and they wouldn't even be able to set anything up until after the weekend. Which made me feel that they really didn't care that I was still feeling like crap and in pain. After I got off the phone I called Ryan and let him know how upset and frustrated I was. We decided at that point we weren't going to continue to see that doctor. The next day I called Aspirus in Wausau and set up an appointment with an Internal Medicine Specialist after getting some advice from a friend that also had Lyme disease.
Today was my appointment at Asprius. The doctor listened to me. Agreed that I have had Lyme disease since May or June of last year. I probably hadn't noticed the symptoms then because I was dealing with a 4 month old baby as well as standing up in my sisters wedding. She read through all of my tests and records from Marshfield Clinic for the past year. She feels my post partum depression and anxiety diagnosis may partially be from the Lyme disease. The fatigue and general lack of ambition were big symptoms in that diagnosis and those things have still not resolved even though I do feel somewhat better . She did a physical exam to test for nerve issues. My reflexes were weak and I was unable to keep my eyelids shut when she pulled them open which concerned her. She did say the tingling I occasionally get in my right hand in the mornings is not the Lyme disease but carpal tunnel and prescribed me a wrist brace for that. She feels I have enough neuro symptoms to warrant deeper testing. She ordered another Western Blot to see how my Lyme antibodies are now that I've completed my first cycle of Doxy. She said the records for Marshfield showed that I still had a significant amount of antibodies at my last check up even after 4 weeks of antibiotic treatment (1 of Amoxicillian and 3 of Doxy). She prescribed a migraine medication, a B-complex supplement that helps with nerve and headache issues, and a medicine that calms nerve irritation . Hopefully that will get some control over the facial twitching that hasn't gone away despite being off the Prednisone for almost 2 weeks. If the MRI comes back okay I am to try the medications for a week and see if they help...if they do I'll just continue on with a second month of Doxy and if they don't then she will do a spinal tap to check for the bacteria in my spinal fluid.
I had the MRI right after my appointment. I had a headache to begin with but even with ear plugs that machine is SO LOUD. I thought my head was going to explode right in the little tunnel of the machine. Afterward the technician told me it would take up to 24-48 hours to get the results to my doctor and then she'd call me. I left and went to my mom's to pick up the kids. I had such a headache I took a pain pill and laid on the couch and napped until I could look outside without squinting and then we came home. By the time I got home there was a message on the machine from the doctor's office asking me to call. I'm not sure what its about and now I'm nervous since it was already after hours and I couldn't get through to anyone. I'm hopeful that because they didn't continue trying to get a hold of me that its nothing serious. Hopefully now I'll start having some improvement or at least know what the heck is going on and why I'm not getting better as quickly as I should be. Thanks to everyone that has helped or offered to help and for the support and words of encouragement from everyone else. I will update again in a week or so depending on what the doctor's office says tomorrow.
LYME
is a four letter word
No comments:
Post a Comment