finally got some answers - where to go next

Zoe Butterfly said...
hello all-- well i finally got results from all the lyme testing and b12 and thyroid-- although most everything was normal and the lyme was negative overall i did have some positive bands associated with lyme-- but basically it's ms-- now where to go-- i am confused by my neuros who told me that interferons were a no go for me cause of high depression and suicide in my family and my past-- also because it is an immune suppressor and i get lots of infections-- but then my neuro thought we should maybe try rebiff-- then he said he thought i should see a different doc at the center who is more specialized in ms (i see her tues) i was interested in tysabri and then i found out about ldn... i do not know what to do-- my family is worried about the thought of interferons expecially after my uncle's tragic suicide (he had lupus) -- aside from symptoms that change daily and being tired i am not too bad-- i sure wish the copaxone had worked for me but my body was too allergic i guess-- i don't know what to do as faras decisions-- i need to keep up my quality of life so that i can work and stuff as well as think of the long term-- i am a bit scared and feel lost-- i don't want my neuro to have the be all end all decision in my medication course but i know i need to do something--

There's no guarantee of course that any of the meds will ensure any quality of life.  They may stave off exacerbations, but that isn't for certain.  You do need to think about your own long-term goals and employment issues, and try to think about what you might need to do to make adjustments if necessary.

I've always tried to "plan for the worst and hope for the best"...thinking about what the worst might be is scary, but if you plan for it and it doesn't happen, then you're ahead of the game.  Good luck!

I know it is frustrating to go from doctor to doctor and just want some answers and relief.  I hope that you can find that.  I just wanted to suggest that if you did indeed have some positive bands in the antibody test for Lyme disease, you are showing exposure and ifection (at least in the past) to something.  It is possible that the bacteria (and/or common co-infections) are still causing you problems even though your overall test was negative.  I have never understood why one has to have a certain number of bands show up as positive.  If you have been exposed, then you've been exposed.  Many Lyme specialists will look to see which specific bands show up.  It is my understanding that some bands are thought to be specific to Lyme disease, while some are thought to be specific to any type of spirochete bacteria, for example.  They don't have the same view on the number of bands that must show up to signal a positive test.

Just some food for thought.  I wish you the best of luck,

Alexia

Good luck, Zoe Butterfly.  Be your own advocate! 

Take care,

Alexia