Eiren said...
Sorry, I've looked all over the internet for some answers, and I'm not finding anything that helps me.
I got Lyme last September. Rash and blood test both diagnosed me. Did normal Doxy, seemed okay, then a few weeks later got issues with my right hand. It felt heavy and numb. Doctor thought it was tendonitis, but then I got twitchy, stabbing pain in the other hand. And then in my feet and legs. Got sent to a Rheumatologist, who referred me to a Lyme clinic, but also signed me up for O.T. because my hands were really weak and sore.
The O.T. did show that my hand strength was quite weak, but I had a hard time doing the hand exercises because it would cause stabbing pain up my arms that lasted the rest of the day. After a few weeks we put the O.T. on hold as I was (finally!) going to my appointment at the Lyme Clinic.
I didn't know quite what was wrong with me, but from reading around on the internet, what I feel in the hands and feet most closely matches the symptoms described for peripheral neuropathy. My GP agreed, and put me on amitriptyline to help with the pain.
I went in to the Lyme clinic and saw a bunch of specialists, including a neurologist, who didn't find anything wrong with me in the initial screenings. But the neurologist told me to come back for nerve tests. I did those yesterday, a SSEP and EMG and a skin wrinkle test. They all came back normal. I talked to the doctor who reviewed my results briefly, and told her about the O.T., and she scheduled me to have an ultrasound of my wrists done while I was there. So I got that done, and the tech calculated the area of my nerves, but I don't know if she found anything abnormal. (The working theory is that maybe the nerves and tendons are pinching eachother in the wrist somehow, idk).
The "lyme team" is meeting to discuss my results, and then I'll know what they suggest next. But I'm just so frustrated. I have other minor symptoms (fatigue, bloating, etc.) but this awful painful tingling and twitching in my extremities is quite debilitating, and I just don't understand how I can feel so bad, and yet have the nerve tests all say I'm normal!!!
So I'm just wondering, can Lyme cause a sort of neuropathy which does not show up on an EMG or skin wrinkle test?
Or, maybe the issue really is all in my tendons. Can Lyme cause tendon issues? Can tendon issues feel like PN?
I've had a lot of bloodwork done this past year, including glucose, b12, D and other weird infections. I have borderline low iron and RBC, but other than that I'm super healthy on paper. There's just the Lyme infection last year, I don't know what else could've caused this. I just don't understand how all the tests say I should feel normal, when I feel so awful.
Ideas?
TIA.
Welcome, Eiren!
Yes, you can test good and still have lyme. I had an EMG and NCS done - and nothing showed. They told me I had frozen shoulder. I had over 30 symptoms - body wide and that's what they came up with.
You have been diagnosed with lyme and need to be treated until you are symptom free.
The 'healthy' on paper is typical for many of us...I had very little 'wrong' show up on lab testing.
If you send me an email - saying where in Europe you are - I can see what I have listed for LLMD's. You may need to travel though depending on which country you're in.