hello/introduction

[Guest guest]

I am new to the group. My name is Cathleen. I will be turning 50 in September

and until 1997 my family always called me clumsy or the bull in the china

closet. It wasn't until things got really bad that I started searching for

answers. I found out what I have is CMT and about the same time I found a lot

of

cousins in our family in Florida had this stuff. I developed as sense of humor

early in life due to the problems with falling down, drop foot and weak

hands. I have laughed my way through this and cancer as well. I tell my

friends

one of the nice things about CMT is the little naps I get when I fall down and

wait for my hubby to help me up. Life is to short to be unhappy. I am never

out of pain and I have no feeling from my knees down or in my fingers but I

still manage to do a lot. So far I am impressed with this group and look forward

to being here. Keep smiling Cathleen

[Guest guest]

Hi -

That sounds a lot like my symptoms... I haven't had the heart or breathing

trouble yet, but the numbness is very scary! I am trying to be diagnosed so I

can be treated properly before there is irreversable damage!

Keep us posted!

Amy

" , & Zachary " <believerinJesus@...> wrote:

Greetings all,

My name is and I just joined this group. I was first diagnosed with

Lyme in 2001 several months after my tick bite and EM rash. I just didn't know

what it was. I was having knee and hip pain and bad fatigue at the time. I ended

up going on a very short ( I believe ) 7 day course of doxycycline and was told

I was fine. That started what I now know as my downward spiral into chronic

lyme. Over the years, I have suffered with various symptoms and sought help but

to no avail. This l ast year got really scarey and my hubby finally made me see

a doctor again. (I'm somewhat doctor phobic since it's been such a waste of

money and no help) This doc tested for lupus, MS, RA, and some other things but

all came back negative. What he did suspect was lyme. Lyme? I was shocked! I

shared with him my experience with lyme in 2001 and he thought perhaps a new

bite had exacerbated old symptoms or reintroduced new infection. That was in

October 2007. I went on an aggressive herbal

therapy since then but things continue to go downhill. I am in pain most of the

time and during the last year, have developed both nuerological things which

seem like mini strokes with numbness and tingling in my mouth, tongue and lower

face as well as both arms/hands but not always. This only last minutes at a time

but leaves me weak and my arms feel like lead. And some scarey things have been

going on with my heart....it flip flops hard in my chest and leaves me feeling

like I just had the wind knocked out of me. Occassionally it races and I can't

seem to catch my breath. It's wierd, at night, when I lay down, my breathing

starts coming in gasps like I can't get enough air. Last night I started and my

hubby gave me his breathing machine mask for sleep apnea which did seem to help

as it blows oxygen hard into your nostrils. So much of this doesn't seem like it

should be related but I am learning. I know ignorance is not bliss but some of

the things I am learning are

scarey too!

Well, I feel I have written too long. Aside from all that, I am a wife to ,

my best friend and mother to Zachary who is 16. Our family lives in MIssouri

where we live on a small farm and raise animals - cows, pigs, chickens, turkeys,

ducks and geese.

thank you for letting me join,