Friends, I posted about a month ago, but things have gotten worse very fast, and I’m in crisis last 6 weeks. I’m just paralyzed with fear and can’t think rationally. Please help me if you can. (History: Lyme positive LabCorp Jan ’17, likely infected year prior, heavy neuro involvement, LLMD has had me on 1 year abx, all symptoms resolved by Oct ’17).
What started out 6 weeks ago as internal twitching, trembling and loss of skills/coordination of my left hand has changed /expanded over the past few weeks: 1) Expanded from left hand up arm to left wrist, forearm and upper arm and even left shoulder now, which now feel fatigued and burn with fatigue 24/7. Not weak per se, as I seem to have the same strength, but they tire so easily and burn from fatigue. It happens noticeably when I'm typing and driving - can really feel the fatigue. Even in the morning before I get out of bed and obviously haven’t used the muscles. 2) worsening uncoordination of my left hand - mostly pinky, ring and thumb - makes typing and turning pages difficult. Typing in particular is getting harder. 3) Just started random TWITCHING in other body parts, especially when resting - never had this before. Hideous. Just started several days ago after a month of the Left hand/arm symptoms 4) Upper calves behind knees feel really weird last 2-3 days – heavy and alive from within. Can feel the pulse in them constantly.
NONE of these were original lyme symptoms of mine. (My initial Lyme symptoms were severe brain fog, head pain and pressure, stiff neck, joint/muscle pain, tremors, tingling/numbness, chest pain, etc., although my left hand/arm was always worse from the lyme get-go). All are new beginning 6 weeks ago, and only after a complete year on antibiotics and treatment with total resolution of all original symptoms. Did have recurring 2-weeks of chest pain just days before all this started, like I had at lyme onset.
Deathly afraid of these new and increasing symptoms with regard to ALS, MS, etc. Fear has stolen my life, can’t function or work. 24/7 panic, adrenaline like I jumped in front of a car all the time. My family is trying to help but this crisis is bad. I was a fine, happy 55-year old 6 weeks ago.
LLMD started me on Bart treatment 10 days ago. Said it could be co-infection rearing now that the lyme was suppressed.
Here’s the thing…Lyme and Co has hundreds and hundreds of symptoms. Why don’t I have any symptoms that don’t match ALS or MS? Not even one. If it’s Bart, or another coinfection, or a return of lyme, wouldn’t I have other symptoms? Am I so paralyzed with fear I’m overlooking other symptoms? Is anxiety itself a symptom?
What are your thoughts friends? Know of other similar lyme experiences with fast progressive one-sided weakness/uncoordination, combined with weird twitching, AFTER a year on treatment? I’ve looked at so many threads from people who presented initially with these and other symptoms, just not anything with new onset later and so specific/limited in scope. What if this is something other than lyme. The anxiety/panic is crushing and killing me, almost literally. It's just gotta be lyme & co, right? I'm so scared.
Please help if you can. Please, please let this just be new co-infection or undertreated lyme. Hoping someone out there can help me understand what is happening to me. I'm so desperate, and I’d be so grateful for any reassurance. Sorry for the rambling, long nature of the post