Re: New to you but not LD: Chronic Lyme in TX

[Guest guest]

Chelsea,

I too am a Texan who was infected in 87 and not dx'd until 2005.

It has been a horrendous road!

But I am feeling better than I have in years...I just know and live within my

limitations and make the best of my good days.

I still have bad days, but they are fewer.

I have a wonderful LLMD, but travel out of state for the care!

Dawn

[Guest guest]

Dear Dawn,

Wow you've lived for so long undiagnosed what's the one thing you would say

has

helped you the most in getting alittle better. My daughter has probably had it

for years

also but has constant spinning and can't get out of bed. Any advice?

>

> Chelsea,

>

> I too am a Texan who was infected in 87 and not dx'd until 2005.

>

> It has been a horrendous road!

>

> But I am feeling better than I have in years...I just know and live within my

limitations

and make the best of my good days.

>

> I still have bad days, but they are fewer.

>

> I have a wonderful LLMD, but travel out of state for the care!

>

> Dawn

>

>

[Guest guest]

-

I, too, am a fellow Texan, a transplant to the Dallas area, who travels out of

state for care.I have been sick for 39 years.

My symptoms started as the usual Lyme problems...chronic fatigue, fibro,

irritable bowel, bladder problems, vertigo, etc...

Then after the birth of my second child I went into straight MS. In late 2004

and all of 2005 I was using a walker and wheelchair.

Once I got to a doctor who fully understood the complexities of these infections

I started to get well.

I saw very small gains in the beginning, but I continued to improve. Once I got

past the 18 month mark I got to the point where I felt really well. Now at two

years I feel great and live a very busy full life. If I can get well, then there

is hope for all.

My advice is research doctor choices...which doctor is getting people well in

higher numbers, and which doctors have the most experience.

Best Wishes-

Torrey- Vice President

The Lanford Foundation-Lifelyme, Inc.

www.lifelyme.org<about:blank>

klcst@...<about:blank>

[ ] Re: New to you but not LD: Chronic Lyme in TX

Dear Dawn,

Wow you've lived for so long undiagnosed what's the one thing you would say

has

helped you the most in getting alittle better. My daughter has probably had it

for years

also but has constant spinning and can't get out of bed. Any advice?

[Guest guest]

Hi Dawn!

Tell me about your lyme history. I've been sick since 04, just recently

dioagnosed and will be starting treatment on Tuesday after the last round of

blood tests(for now) on Monday.

Chelsea

denisepapanikolas <denisepap@...> wrote:

Dear Dawn,

Wow you've lived for so long undiagnosed what's the one thing you would say has

helped you the most in getting alittle better. My daughter has probably had it

for years

also but has constant spinning and can't get out of bed. Any advice?

[Guest guest]

Dear ,

Your story is amazing and I'm glad to hear the miracle news that

you feel great. You have been through so much. I cry every day to

see my daughter suffer at 22 years old. She has not walked in over 1

1/2 years from the non-stop spinning. you said it was so important

to have a good doctor and ours is Dr. Bernard Raxlen from NY even we

live in Salt Lake. 6 weeks on Zithromax and Mepron left heer

spinning worse. For the last 4 weeks she has been on IV Rafamptin

and now with no symptom change she is being changed to a more broad

spectrum. I'm very confused about why not one thing touches the non-

stop vertigo. She lays there all day in her bed not even being to

move. Do you know if rifing helps at all?

Thanks

On Jan 4, 2008, at 7:45 AM, Doyle-Torrey wrote:

> -

>

> I, too, am a fellow Texan, a transplant to the Dallas area, who

> travels out of state for care.I have been sick for 39 years.

> My symptoms started as the usual Lyme problems...chronic fatigue,

> fibro, irritable bowel, bladder problems, vertigo, etc...

> Then after the birth of my second child I went into straight MS. In

> late 2004 and all of 2005 I was using a walker and wheelchair.

> Once I got to a doctor who fully understood the complexities of

> these infections I started to get well.

> I saw very small gains in the beginning, but I continued to

> improve. Once I got past the 18 month mark I got to the point where

> I felt really well. Now at two years I feel great and live a very

> busy full life. If I can get well, then there is hope for all.

> My advice is research doctor choices...which doctor is getting

> people well in higher numbers, and which doctors have the most

> experience.

>

> Best Wishes-

>