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RE: Neurologic Lyme

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hello to all,

i have read so many emails but never asked for opinions or any questions. Lord

knows I have one now.

I was dx with lyme about a year and a half after symptoms. Now in the past

year i hv been on iv, doxy,zithro, rocefin and leviquin. I have not seen

improvements.

I am now with a walker, speech problems and weakness all over, so much that

typing is hard. As anyone gotten so bad and yet had some sort of recovery?

Reaching rock bottom

Aida

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Hi Aida

I have had lyme for 30yrs, dx 5yrs ago. Got dx w/ MS 12 yrs ago. I have alot

of neuro damage. After 5yrs of abx, still not normal and still suffering. If

you would like to talk, email me privately.

aida ricardo <aidaricardo@...> wrote:

hello to all,

i have read so many emails but never asked for opinions or any questions. Lord

knows I have one now.

I was dx with lyme about a year and a half after symptoms. Now in the past year

i hv been on iv, doxy,zithro, rocefin and leviquin. I have not seen

improvements.

I am now with a walker, speech problems and weakness all over, so much that

typing is hard. As anyone gotten so bad and yet had some sort of recovery?

Reaching rock bottom

Aida

Questions and/or comments can be directed to the list owner at

-Owner

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aida

hello yes I have gotten bad not a walker but seisures

frontal lobe damage and bed ridden for two yrs. As I

am in bad sprits right now from herxing I want you to

know I went into remission 3 times and it does get

better. we have get support from our fellow lymies

just stick with the meds and make sure you have good

drs. it does get better. God bless I'll pray for you

and your family and stay positive you need to.

__________________________________________________

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  • 6 years later...

Has she been tested for mycoplasma fermentens? It is a coinfection of Lyme that

can cause kids to have many of the symptoms you have described, my daughter had

it and was treated with the antibiotic Rifampin.

[ ] Neurologic Lyme

My daughter first got Lyme In utero. She was treated and got to live like a

normal kid for over a year. Aparently she got bit this spring or summer and has

a horrendous case of neurologic Lyme. She's having visual, auditory and sensory

halucinations, some she knows are real some not. On her good days she she works

through it and goes to school. When it's bad it's really bad. I'm a single Mom

with maybe a couple hours relief a week and the longer it goes on the harder

time I'm having remaining calm through it. The other night she thought I was a

gargoyle and the medicine I was giving her was poison.

She's already on antibiotics and herbs. We're working on getting her on IV

Rocephin. She's being treated by a psychiatrist who specializes in Lyme so we

have all the medical angles covered, it's how to deal with her symptoms at home

I need help with.

Has anyone else dealt with this? Do you have any suggestions? I'm doing the

best I can but the helplessness I feel makes it worse. I know she needs me to be

calm but when she's screaming and moaning in horror, talking to herself, walking

around in circles throwing things on the ground at the imaginary stuff she sees,

I have a really rough time staying calm. I'm working on getting a psych nurse to

come help but I don't have a lot of hope for that.

[The entire original message is not included]

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