Spent several days pouring over the posts here. Lots of great info & see myself in the problems & issues many have posted here.
Been dealing with Lyme issues since the Spring of 2016. Started with odd, bilateral pains in biceps, forearms, thighs & shins. Started on Doxy in Jul 2016. Stayed on them until Oct. Felt much better & all symptoms seemed to disappear....until Last Sep.
Since Sep 2017, my main issues are major tingling in my extremities...including the tops of my feet & my hands. I cannot sleep! I take melatonin, Nyquil, advil PM, Tylenol pm, etc...etc. Not all at the same time, but a combination of a couple of each, every night.
I have been to see:
**Neurologist...he got my brain MRI disk, never got back to me for follow up after leaving 4 messages. MRI showed "Grey Matter Signal". I really wanted to know what that was about
!
**Rheumatologist...had many issues with the communication of her office staff. The meds she gave me *Steroid that I can't remember the name*...when I finally went back for follow up, I brought blood test results. She wanted me to get an infusion for my bone loss. Made the apt & went on my day off...they couldn't do the infusion because my calcium levels were too high! Then the doc said she wanted me to re-do the same lab tests. I was SO pissed...and SO done! I left.
**pain management doc...He had an MRI of neck/spine. (slight disk bulging) he tried upper spinal injections to see if that helped with the numbing/tingling/nerve pain in my extremities. Did that twice & it did nothing. He sent me to a brain/spine surgeon for another opinion. Even tho his office has "Pain" in the name, they did absolutely nothing for my pain.
In between visit with pain doc & brain/spine surgeon I found an LLMD & made an appt. This apt was after visit to surgeon...
**Brain & spine surgeon...(I kept this apt because I wanted to cover all bases, even tho I knew this would be a check off the list of things I "don't need or have"). His PA was very thorough. Asked me a ton of questions & did a series of tests of my physical abilities & pain levels during testing.
When the doc came in he said that he looked over all her notes, and my MRI & felt that my discs are pretty normal for someone my age. He saw nothing that needed any surgery.
When he finished, I then, told him that I had an upcoming appointment with my LLMD. He totally agreed and told me he thought I was on the right track & that Lyme was something he thought as well, but didn't want to be the one to diagnose it, as that is not his area of expertise.
That surgeon was the only one who wasn't really a waste of time.
Saw my LLMD around April 24. She put me on Cefuroxime axetil 2x & Azithromycin x1 on M-W-F, then the stinky powder (can't remember the name...I'm at work!) on the off days.
That regimen for 3 weeks. During week 2, I had my bloodwork done on Friday.
I guess this process set my body up for the most accurate test result, which was...Lyme positive & mold sensitivity/reaction.
I'm tired, I cannot remember the last time I didn't hurt, I soak in Epsom salts when I can. Still have to work 40 hrs a week, but at least it's 4-10 hour days, since my commute is an hour each way.
So...that's where I am now....sitting at work, feeling lucky that this forum is out there & one of a handful that isn't blocked by our firewalls!
