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Hi Kay,

I am so sorry your poor daughter has been sick for so long and only just

diagnosed. I am also sorry that you had to put up with that condescending

doctor at Tufts....and he was the best of the worst!!!! And he had the

nerve to charge you for blood work he did not draw??? The high dosage of

amoxicillin your daughter is on, should show some results, is there any

special reason why she must wait till the Fall to start IV? I am assuming

you have finally found a Lyme literate doctor who is treating her....is that

right???

I am curious what the doctors attributed her MRI results to, if they kept

denying Lyme disease, what diagnosis' did they throw at you?

My heart goes out to any mother who has a child with Lyme disease, it is so

devastating to watch your child suffer and not be able to help, please keep

us posted as to her progress.

Hugs,

Marta

>From: " Kay " <b10g7@...>

>i am kay, my 9 year old daughter was FINALLY diagnosed with late stage lyme

>last week. she has had the most horrible year a 9 yo could have. talk about

> " hating " doctors, i have been taking her for titers for 4 years!!! negative

>titer...NO LYME! get lost!

>well the best (best worst) one of all of them was from a " pediatric

>infectious disease specialist " at tufts this spring. (wants 284 dollars,

for

>his professional opinion, and 72 dollars for lab work she never had blood

>taken for because i walked out!) after driving into boston, waiting for him

>for an hour, we saw him for approx. 10 minutes. he kept calling me " mom "

and

>did not talk to my daughter even when she spoke to him. i had sent him some

>of her history and symptomology and he had not taken the time to read it.

>when it was evident he was a moron i started asking him questions i knew

the

>answers to. he told me late stage lyme is in full effect by 3 months after

>the bite. if she had contracted lyme 4 years ago she could not possibly

have

>lyme now, even though she had never been treated.

>sorry this is so long! she has an abnormal mri (multiple lesions through

the

>brain, predominately in the frontal lobes) psychosis, severe cognitive

>decline, irritability, abnormal visual evoked potential, hallucinations,

>dementia (severe confusion and forgetfulness)... more, yes, way more...

>she just started 2000 mg. oral amoxicillin with planned iv in the fall.

>peace,

>kay

>

>

>

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  • 1 year later...
Guest guest

Welcome Kay- I know you will like the group. They are an amazing support

system!! ne

>From: TABco <tabco@...>

>Reply-egroups

>egroups

>Subject: Re: Welcome Kay

>Date: Sat, 08 Jul 2000 23:17:09 -0400

>

>

> >3) Personal Info: myself, married 16 years, Lyme disease, Ehrlichiosis

> > & Babesiosis for at least 25 of my 44 years. diagnosed 7 months ago son;

>14

> >years, same diseases, gestationally infected, diagnosed 7 months ago at

> >age 13 daughter; 11 years, same diseases, gestationally infected,

> >diagnosed 13 months ago at age 10.

>

>Hi Kay,

> I see we share the same birthday. I know several people who have the

>same birthday, and I'm told that is unusual. Most people don't know one,

>who shares their birthday.

> Anyway, Welcome to our little place on the net. I'm quite familiar

>with Lyme Disease (I know a few people with it, including my sister), but

>the other two mentioned above are new to me. Do you care to tell us a

>little about them? Symptoms/treatments?

>

> >7) Webpage: no webpage but just opened

> ><mailto:lyme-informationegroups>lyme-informationegroups

>

> I'll pass this on to my sister, when she gets back from vacation.

>

>

>E-Mail: mailto:tabco@...

>Web Page: http://users.jnlk.com/~tabco/

>Net Pager: http://wwp.mirabilis.com/3106983

>ICQ # 3106983

>

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>3) Personal Info: myself, married 16 years, Lyme disease, Ehrlichiosis

> & Babesiosis for at least 25 of my 44 years. diagnosed 7 months ago son; 14

>years, same diseases, gestationally infected, diagnosed 7 months ago at

>age 13 daughter; 11 years, same diseases, gestationally infected,

>diagnosed 13 months ago at age 10.

Hi Kay,

I see we share the same birthday. I know several people who have the

same birthday, and I'm told that is unusual. Most people don't know one,

who shares their birthday.

Anyway, Welcome to our little place on the net. I'm quite familiar

with Lyme Disease (I know a few people with it, including my sister), but

the other two mentioned above are new to me. Do you care to tell us a

little about them? Symptoms/treatments?

>7) Webpage: no webpage but just opened

><mailto:lyme-informationegroups>lyme-informationegroups

I'll pass this on to my sister, when she gets back from vacation.

E-Mail: mailto:tabco@...

Web Page: http://users.jnlk.com/~tabco/

Net Pager: http://wwp.mirabilis.com/3106983

ICQ # 3106983

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Guest guest

Hi Kay

I just wanted to welcome you to the group. You are gonna love it here.

Everyone is sooo nice, and most questions can be answered by some one,

if not by lots of us.

So sit back....kick off your shoes....and made yourself at home.

Sheri.....Babe....I don't remember welcoming you......it just dawned on

me this morning. PLEASE forgive me....This brain fog can sometimes cause

me to be rude.....Bad Brain Fog!!!!!

Big Warm Welcome Huggs

((((((((((HUGGS))))))))))

Marilyn

We

Are Family

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  • 9 years later...
Guest guest

Hi Kay,

Glad to see you joined the group! Thanks so much for introduction, I appreciate

it very much. We've been here 12 years or so and are still learning about CMT.

And the information just keeps coming!

Gretchen

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