do not despair!

February 24, 2009 at 9:29 pm

Hi Kathi,

If you think you can’t heal, then you won’t… If you think you will heal, then go ahead and heal!

I also have CIDP residual to chronic lyme and co infections and a boat load of autoimmune diseases. I was told that there was severe axonal damage, and that much of it would be permanent.

After more than 1.5 yrs of IVIG and intensive physical therapy in the form of Integrative Manual Therapy, swimming and rehabilitative snow and water, skiing, and neurofeedback I can say I am healing.

I believe some of my damage may have some permanance, yet I refuse to limit my healing possibility. I have very strong, balanced and functional moments, yet I am not symptom free.

I believe as does my neurologist, that some nerves have not and may not heal, yet my body is smart and other nerves are branching and doing the jobs of those still damaged. When I am stress physically, mentally and/or emotionally, there seems like there are not enough nerves to meet the demands of my system, inflammation will increase and symptoms will flair.

Nothing has ever been as bad as before IVIG, and flair seem to last shorter in duration, yet they are sometimes very intense and a bit scary.

Unlike others, I am not yet able to return to work, but with pacing I can exercise moderately, and keep up with my household chores to a relative degree. Home renovations and extra chores are still something of dreams, but making dinner often happens by me.

I echo other’s advise to keep looking for the right dr. You need someon with your vision and hope to help you develop a healing plan that you are a partner with.

I wish you well, and welcome!