Posted 1/25/2024 9:12 PM (GMT 0)
Hi Everyone! I've been following you and your great info for quite a while. I contacted the Texas Lyme Disease Association and they gave me a list of LLMD's in TX but I was hoping for some recommendations from anyone who is happy with their doc. I live in East Texas and don't want to go too far. I get lost easily even with GPS and traffic is stressful!
I was diagnosed in 2021 by my PCP using western blot. P41 igm. I've been searching for a diagnosis for 20+ years. First indication was migraine, then later that day every nerve in my body was on fire. Agony to move even a finger, to breathe because lungs hurt, couldn't lie down because the pain in the back of my head and neck was worse. Spent 3 days in the recliner unable to do anything. Doctor said it was the flu!! After that my muscles burned and became weak when I tried to drive, hold the steering wheel, press the gas pedal. Everyday activities where torture. Finally got somewhat better but then for years tired easily, had strange nerve sensations and pains, skin sensitivity, frequent migraines, occipital neuralgia, joint pain. Over the years it got so bad that I couldn't climb stairs or walk up hills because of burning pain and weakness. I couldn't do repetitive movements like chopping vegetables because of burning pain and weakness in my hands.
Sorry this just keeps going on! I had all the brain fog, short term memory issues and so on. Brain scan showed white matter disease but not MS. That all got much worse after I had a subarachnoid hemorrhage in 2016 and spent 16 days in ICU with a drain in my head. Fortunately I survived that one too but was then found to have cerebral microvascular disease when my current doc did a scan after my Lyme diagnosis.
Anyway, doc treated my Lyme in 2021 with minocycline for what stretched into 6 months before I felt better. It did seem to work and put me into remission. I believe it's flaring up now. All joints, especially shoulders, hips and knees are painful and I have restricted mobility in my left knee. Starting to have skin sensitivity issues, insomnia, burning on back of head, etc.
I would like to find an LLMD. I'm scheduled to see my PCP next week and he will probably want me to do another round of minocycline. I originally asked him about co-infections but he said if I had any they would be taken care of by the minocycline. I know that's not right but he's trying!
Any recommendations would be so appreciated!!