PA

[Guest guest]

Dear Gail: Who and where is your PA doc located?? What county are you

in?

Lovette

[Guest guest]

lovette. my lld is in windgap if that helps u?

Reid

[Guest guest]

Hi Ken:

My doctor is in New Jersey. She is worth the ride. I live in Bucks County

PA.

I went to a local doctor for two years, and he ran out of ideas for me so I

had to fight hard to get someone good to treat me. Are you in PA? Do you go

to a dr. here?

Where do you live? How long have lyme?

Regards

Gail

[Guest guest]

Dear Gail:

I live in PA next to the land border. I'm going to see a doc in

Baltimore next week. Wish me luck!

Lovette

[Guest guest]

F. Mott wrote:

>

> From: " F. Mott " <smott@...>

>

> Dear Gail:

>

> I live in PA next to the land border. I'm going to see a doc in

> Baltimore next week. Wish me luck!

>

> Lovette

>

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I live in MD and haven't found a good doctor in 5 years

[Guest guest]

ryaklich said:

> I live in MD and haven't found a good doctor in 5 years

>

Dear Friend: What docs have you seen? I am going to see a Dr. Levin

next week. The Mid Atlantic Lyme group told me he was good.

Lovette

[Guest guest]

ryaklich wrote:

>

> From: ryaklich <ryaklich@...>

>

> F. Mott wrote:

> >

> >

> We have been to local doctors at College Park, North, Hopkins,

> Geortgetown, Several Balt Med Centers, Dr Gill, Shaw, but not to Dr

> Levin. All of the above call Connecticut for advice, or follow protocols

> advanced by their professional societies. Ask if antone goes to see him?

> I haven't heard his name mentioned in MD Lyme groups.

>

> --

Dear Ryaklich: What did you think of Dr. Gill? I postponed an

appointment with him until the end of Nov. because I found a doc to put

me on Rocephin IV. I also have an appointment with Dr. Auwater at

Hopkins on the 17th, because he's in my network, but don't know whether

I'll keep that one. I'd love to hear your tboughts on these docs. By

the way, do you have CNS lyme?

Lovette

[Guest guest]

F. Mott wrote:

>

> From: " F. Mott " <smott@...>

>

> ryaklich said:

> > I live in MD and haven't found a good doctor in 5 years

> >

>

> Dear Friend: What docs have you seen? I am going to see a Dr. Levin

> next week. The Mid Atlantic Lyme group told me he was good.

>

> Lovette

>

> ------------------------------------------------------------------------

>

[Guest guest]

F. Mott wrote:

>

> From: " F. Mott " <smott@...>

>

> ryaklich wrote:

> >

> > From: ryaklich <ryaklich@...>

> >

> > F. Mott wrote:

> > >

> > >

> > We have been to local doctors at College Park, North, Hopkins,

> > Geortgetown, Several Balt Med Centers, Dr Gill, Shaw, but not to Dr

> > Levin. All of the above call Connecticut for advice, or follow protocols

> > advanced by their professional societies. Ask if antone goes to see him?

> > I haven't heard his name mentioned in MD Lyme groups.

> >

> > --

> Dear Ryaklich: What did you think of Dr. Gill? I postponed an

> appointment with him until the end of Nov. because I found a doc to put

> me on Rocephin IV. I also have an appointment with Dr. Auwater at

> Hopkins on the 17th, because he's in my network, but don't know whether

> I'll keep that one. I'd love to hear your tboughts on these docs. By

> the way, do you have CNS lyme?

>

> Lovette

>

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> You may substitute " unsubscribe " , " digest " , or " normal " for

> the word " subscribe " ( " normal " is the opposite of " digest " )

Dr. Gill wouldn't touch our lyme problem and was rude wanting to know

who gave us his name. The Lyme specialist at Hopkins does not listen to

patients. He has preconceived ideas. You would think these docs would

wonder why all these people are sick.

[Guest guest]

Hi,I'm Tina and I'm new to the group.I live in PA and was wondering how to get involved in those services.My almost 3 year old son,who's been recently diagnosed with Autism is already receiving speech and behavioral therapy through early intervention here in Lebanon County.Laha1960@... wrote:

In a message dated 4/20/05 4:04:25 A.M. Central Daylight Time, Autism and Aspergers Treatment writes:

The downside to our area is the lack of experienced physicians. However, Pittsburgh has a wealth of specialists and a wonderful Children's Hospital. You might want to think about the Suburbs, "IF" you can find employment. And that truly is an issue in Western PA.Anyway, PA also qualifies kids with ASDs for Medicaid coverage and has a program called "Wraparound" that includes a Behavioral Specialist, a Therapeutic Staff Aid and Mobile Therapy. It also pretty much guarantees your child for Occupational, Physical and Speech Therapies, if needed.Hope this helps. From all the support groups I'm with, PA has seemed to have the most extensive program for our kids. We have not had to pay a cent for any of this therapies.

**************

YES YES. NO , I am NOT in PA. However, my friends who are that I know on lists and those who live there, who are parents with children with disabilities, get those wraparound services . I can not tell you how lucky that you all are in PA. We just have NOTHING like that here or any place I have lived.

IT is a state to state thing and PA has a GREAT system, so be thankful!

in Illinois__________________________________________________

[Guest guest]

> Tina Hicks wrote:

> Hi,I'm Tina and I'm new to the group.I live in PA and was wondering

> how to get involved in those services.My almost 3 year old son,who's

> been recently diagnosed with Autism is already receiving speech and

> behavioral therapy through early intervention here in Lebanon County.

Hi Tina,

First, you'll need to be referred for the services. Which means a

psychologist will have to write a prescription for wraparound and how

many hours you'll need it per week. OT/PT/Speech is usually much easier.

You do need to be referred, but there is not as much red tape.

I would suggest private OT and Speech too. The private focuses on daily

life skills whereas in school A focuses mainly on school functioning.

You can have both - we do

As far as wraparound, it takes some time. You a report from the psych

who sends to the wraparound agency you select. Agency meets with you and

your child. Decides how it will all go. Then they send that back to the

Psych who has to approve and send back. THEN...the agency sends it off

to burg for final approval. Whew...it's quite a whirlwind of

paperwork, but well worth it imho.

Here's a link to Lebanon and Lancaster Counties:

http://www.cciu.org/Departments/StudentServices/HomeCommunityServices/hcslancgui\

de.html

Hope this helps!

Amy C (way over here in Western PA )

[Guest guest]

---

Hey Vonnie,

Great to hear from you!! Yeah, before you know the big day will be

here for you!! I just can't believe it finally came and went for

me..seems strange in a way for me.

Yes, the pain I have is not pain I had before the surgery. I don't

think I could hang on to a counter at this point..my body will not

bend that way!!!I have surgery pain and some annoying pain in my

right wrist from, I think, an IV after the second surgery.It feels

like nerve pain,it is not always there, it is annoying more than

anything.

I am very tired. When I spent 6 hours at the court yesterday, I could

not believe I was able to do it...yes, I was so , so tired. But I

needed 5 units of blood total and have low blood pressure and that has

been an issue in feeling chipper, I am sure. I was home most of the

day with my younger children while my husband and oldest daughter

went to a Phila basketball game...I was able to do it...I consider

all that a good day!!!

Please tell Dr.Rand I send my regards when you see him ,I am sure

he'll remember me..hehehe

Keep your head up and know it is possible to get past all of this...I

am proof..big baby that I am....I contiue to say, if I can do this,

anyone can...you will have a few rough days after each surgery but 24

hours turns into 48, so on and so forth , very fast..and before you

know it you are in Jordon and on your way home...crazy I know...,

PA

In , " Vonnie " <vonniec20032000@...>

wrote:

>

> Hi ,glad your doing better..That's great the you were able to

sit

> somewhere for 6 hrs. and be ok with it.You must be so excited that

> your finally able to move around and it's all paying off now for

what

> you went through..How is your pain level is it just surgery pain

that

> you have now? No more of that pain going down your legs like

before?

> That's what I want to stop is that pain that I have, and have to

hang

> onto the kitchen cabinets just to cook a meal at the end of the

> day..It's really starting to get closer and closer to my date.But

> after all of you are doing so great after all your surgery's so

it's

> giving me alot of hope. I feel alot better going into this now than

I

> did before I met all of you wonderful people in this group. It is

> nice to have such a great support group..I love this group of

people

> for that,you are all so wonderful..

>

> I don't know why but I think is having another problem again

> because I can't reply to the posting on the group website.It

happened

> before and they fixed it now it's happening again so I had to start

> at the group website to post..

>

>

> pa,I was answering your email but I kept getting a message

> saying it wasn't sent,so I wasn't ignoring you..So glad to hear

from

> you..I see Rand on thurs. 23rd to tell me what he's going to do and

> having blood taken that day too...Keep in touch..Vonnie

>

[Guest guest]

---Val,

Barbara is doing great except the rain is getting to her, she is a

avid runner and hates to be confined to her tread mill.....she

enjoyed visiting you and hearing about your son. It did start raining

here last night and looks like it may rain for alot of the week..I

guess it is our turn!! The walking inside must be a hassle...I had no

choice after I came home, it was Feb. an too cold and icy for me to

go outside. I did more of the putz around the house, I never timed

myself, I walked around until I felt tired. I did go the Mall near us

and walk a few times, it is a rather large mall. Before you know it

it will be nice again...you;ll be out and walking all over Lowell!!!

,PA

In , " redmarmie " <vclark@...> wrote:

>

> Hi , PA,

> I keep singing, rain, rain go away, come again another day. Then I

> pray that all the people I know here in the Boston area do not

flood.

> The worst of it is, I set the alarm on the stove to walk 15 min, 3

> times a day and I walk to room, to room and to room. I WANT outside

> and hear I have over a week to wait. AAAAHHHHHH..... PS...

> How is Barbara doing? Give her my best please and thank her again

for

> the visit and flowers at the hospital.

>

>

>

>

>

> >

> > ---Vonnie,

> > SO glad to hear you are doing well. Yeah, the rain must be

yucky..i

> > talked to family up in the Boston area and they said it has

rained

> so

> > much lately.

>

[Guest guest]

,

Give Barbara my best. Well, if things could not get worse, the

cellar is flooding. The well is not deep enough for a sump pump. He

is vacuuming every 30 minutes and exhausting himself and trying to

take care of me. He has been at this since 6 this morning, he came

up, sterilized himself, changed my leads for the bone stim and then

went back at it. I don't know how long he can keep it up and of

course, there is absolutely nothing I can do to help. I can't even

walk down those stairs, too narrow. I am ssssssssssssooooo

frustrated.

> > >

> > > ---Vonnie,

> > > SO glad to hear you are doing well. Yeah, the rain must be

> yucky..i

> > > talked to family up in the Boston area and they said it has

> rained

> > so

> > > much lately.

> >

>

[Guest guest]

--Val,

Oh, goodness it sounds crazy!! I saw on FOx national news that NH and

Mass were in a state of emergency over this rain!! I know you have

more rain to deal with this week too!! I bet they will still declare

a drought after it stops!!! I know you must feel so frustrated, not

being able to help but you can't help and I am sure he understands.

It also is Mother's Day!!! I have kind of gotten over the guilt of

not helping and I am getting to the point where I could help a

bit...i always do things backwards!!!

Do you were the bone growth stimulator for 4 hours a day? , PA

- In , " redmarmie " <vclark@...> wrote:

>

> ,

> Give Barbara my best. Well, if things could not get worse, the

> cellar is flooding. The well is not deep enough for a sump pump. He

> is vacuuming every 30 minutes and exhausting himself and trying to

> take care of me. He has been at this since 6 this morning, he came

> up, sterilized himself, changed my leads for the bone stim and then

> went back at it. I don't know how long he can keep it up and of

> course, there is absolutely nothing I can do to help. I can't even

> walk down those stairs, too narrow. I am ssssssssssssooooo

> frustrated.

>

>

>

> > > >

> > > > ---Vonnie,

> > > > SO glad to hear you are doing well. Yeah, the rain must be

> > yucky..i

> > > > talked to family up in the Boston area and they said it has

> > rained

> > > so

> > > > much lately.

> > >

> >

>

[Guest guest]

Hi,

I was told he would have to vacuum water all night long. ouch.

I wear the stimulator 24 hours a day.

> > > > >

> > > > > ---Vonnie,

> > > > > SO glad to hear you are doing well. Yeah, the rain must be

> > > yucky..i

> > > > > talked to family up in the Boston area and they said it

has

> > > rained

> > > > so

> > > > > much lately.

> > > >

> > >

> >

>

[Guest guest]

---Val,

Your stimulator must be different than mine. Is it a bone growth

stimulator? a belt like thing that kind of conforms to the back with

thin like straps, also has a computerized counter of hours/minutes.

It makes a slight beeping noise, but you can't feel anything. Mine

plugs into the wall to recharge each night. ,PA

In , " redmarmie " <vclark@...> wrote:

>

> Hi,

> I was told he would have to vacuum water all night long. ouch.

> I wear the stimulator 24 hours a day.

>

>

>

>

> > > > > >

> > > > > > ---Vonnie,

> > > > > > SO glad to hear you are doing well. Yeah, the rain must

be

> > > > yucky..i

> > > > > > talked to family up in the Boston area and they said it

> has

> > > > rained

> > > > > so

> > > > > > much lately.

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Wow! Is it an implanted stimulator or an external stimulator? If

it's an external unit, I think that's the first time I ever heard of

anyone using it for more than about 6-8 hours a day. Did Dr. Glazer

recommend that you use it 24/7, or was it the mfr's rep?

--

>

> Hi,

> I was told he would have to vacuum water all night long. ouch.

> I wear the stimulator 24 hours a day.

>

[Guest guest]

That came from the nurse practitioner, RN at Glazer's office. On my

first post op, I asked her about 3 times. She said they used tons of

BMP and lined up the back into 10 zones, 24 hours a zone and change

the leads every 24 hours.

> >

> > Hi,

> > I was told he would have to vacuum water all night long. ouch.

> > I wear the stimulator 24 hours a day.

> >

>

[Guest guest]

Val -

I'm assuming you meant this to me (CA instead of PA) and I counted

wrong....I'm 11 weeks postop now, not 10. Dr. Hu has me wearing my

brace longer than normal due to the infection I had which caused a lot

of softening in the fusion mass. I will be seeing her in July when I

will be 16 weeks postop, and I'm hoping she let's me out of it then!

~~

>

> Your ten weeks, when do you anticipate your brace coming off?

>

[Guest guest]

Val -

I'm assuming you meant this to me (CA instead of PA) and I counted

wrong....I'm 11 weeks postop now, not 10. Dr. Hu has me wearing my

brace longer than normal due to the infection I had which caused a lot

of softening in the fusion mass. I will be seeing her in July when I

will be 16 weeks postop, and I'm hoping she let's me out of it then!

~~

>

> Your ten weeks, when do you anticipate your brace coming off?

>

[Guest guest]

PA

Yes, I meant you sorry. I just had a post op 7th week and am due

back in the 13th week. July 26th. I hope so too. It is hot here now

and the brace is very uncomfortable in the heat. yuk!

-- In , " " <Dawg@...> wrote:

>

> Val -

>

> I'm assuming you meant this to me (CA instead of PA) and I counted

> wrong....I'm 11 weeks postop now, not 10. Dr. Hu has me wearing my

> brace longer than normal due to the infection I had which caused a

lot

> of softening in the fusion mass. I will be seeing her in July

when I

> will be 16 weeks postop, and I'm hoping she let's me out of it

then!

> ~~

>

>

> >

> > Your ten weeks, when do you anticipate your brace coming off?

> >

>

[Guest guest]

PA

Yes, I meant you sorry. I just had a post op 7th week and am due

back in the 13th week. July 26th. I hope so too. It is hot here now

and the brace is very uncomfortable in the heat. yuk!

-- In , " " <Dawg@...> wrote:

>

> Val -

>

> I'm assuming you meant this to me (CA instead of PA) and I counted

> wrong....I'm 11 weeks postop now, not 10. Dr. Hu has me wearing my

> brace longer than normal due to the infection I had which caused a

lot

> of softening in the fusion mass. I will be seeing her in July

when I

> will be 16 weeks postop, and I'm hoping she let's me out of it

then!

> ~~

>

>

> >

> > Your ten weeks, when do you anticipate your brace coming off?

> >

>

[Guest guest]

Man...you win. Recall after two years. Glad you can laugh about it. -

Love Betz

[Guest guest]

I had finger and toe involvement but also had a stiff neck, sore

muscles around my neck and also hip pain. That was the beginning of my

first episode that was actually diagnosed. I think I had it long

before it was actually given a diagnosis. I hope the remissions are

very L O N G as I need some relief. With me, if it isn't one thing,

it is another. I have not had severe pain since starting the Enbrel

and Methotrexate but had to be off it this week because of an eye

infection and sore throat. So, I am dreading the consequences. Sherry