I post frequently regarding different meds and my overall status and I appreciate everyone's feedback and experience. That said, the past few days have been rough. I've been in treatment for neuro lyme for just over 15 months. The first year with orals and the last 3 months with IV. I've made no improvement and probably, if I'm honest, gotten a little bit worse. I am functional - at least right now - but my quality of life is a quarter of what it used to be. I don't know how long I've had lyme - at least 4 years - but it could have been dormant for a long time. I'm currently on IV Doxy and oral rifampin (for Bart) but this fatigue and neck inflammation are the worst. Despite having a saint for a husband I am very depressed about living my life this way or possibly even getting worse. I'm 37 and want to have a child and even that is secondary right now - I would forgo that to just be better (not to be judgemental here but I would never think of getting pregnant while having lyme). Words of encouragement or possible thoughts on my next medical direction would be great.
Posted by CaliforniaLyme (Member # 7136) on :
At one point I had been on orals for a year and then 6 months of IV with only bad progression of symptoms and could no longer walk and things were very very bad- at one point my then-husband was htinking I was going to die and my mother had decided I was going to die and even told me this really super-depressing dream she had which was her way of giving me "permission" to die (we were in a crowd at a carnival and we became separated and she looked up and she saw me across the crowd standing with my father- who was deceased- and she knew it meant that I was going to die and be with him and be OKAY! isn't that depressing Thanks a lot Mom!) - and I thought I was going to die- I gave up- I GAVE UP- and the only one who was *there* for me was my old cat- and -and then I got better in the 7th month of IV. I GOT BETTER ANYWAY- regardless of what I thought or felt- or others thought or felt- the IV worked- with time-
And I got divorced and dated and had wholesome dates and fun, got married again to a wonderful guy, had another child, my second, Lyme-free, and went back to work full-time and got in PERFECT shape (pre-baby)- and adopted MORE messed-up felines!!! And I still remember more vividly than MUCH of present day moments- those moments that STAY stuck in YOU- in your soul- that moment that last winter when I was staring outside going, "I am never going to see another spring, never feel the warmth of the sun again in the garden-" but I did.
EVERY single person I know who has STUCK with longterm abx has gotten BETTER if not well, period. EVERYONE except the one guy who killed himself- Everyone I know who has gone from abx to something else to somethiing else has NOT gotten better except one guy who did with colostrum and cats claw. Period! That is what I know and see after 8 years in Lymeland.
I believe if you have LYme you will get better with abx- and I have a handful of heartfelt platitudes-
if it doesn't kill you it makes you stronger! the only way out is through! when it is dark enough you can see the stars