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Hi ...

Saw your post on the child that has hepatitis. There are many things that

can be done besides steroids...Steroids is not a treatment for it...just

cuts inflammation and depresses the immune system...recommend she see a

naturopathic doc or herbalist...It can be healed.

Take care and my thoughts are with your loss...Byron

[Lyme-aid] More Bad news

>From: lc lott <lclott@...>

>

>Hi all-

>I hate to add more bad news to all the latest things that have been

>posted but I really think it needs to be done.

>I dont know how many of you know or remember Carlene from this group.

>Her daughter has Lyme and has had several heart surgerys for

>the damage that was done. I have been talking to Carlene and

>has now developed Hepatitis and is being treated with Steroids as this

>is the only way to treat it I guess.

> could sure use all the prayers and thoughts we can give her

>and Carlene too. I know she doesnt get to the post very often because

>she is taking care of and she herself is ill too.

>I told her I would give everyone an update on s condition and

>ask for everyone to keep them in their prayers and thoughts.

>The docs are not very optimistic about her prognosis right now and I

>know poor Carlene is really stressed out.

>

>This has been such a rotten few days with all the new info on Dr. B,the

>bad news for Marta,all the animals in Tenn. To add to the already

>depressing week I had to have my 16 yr old cat put to sleep today.

>I really hope I wake up from this nightmare soon.

>Thanks for letting me vent and lean on you all.

> L(MI)

>

>_____________________________________________________________

>

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  • 2 weeks later...
Guest guest

, All of my prayers go out to and Carlene and to all of us that

we may fight this thing and gather enough support to help Dr. B. we must

think of better days ahead Feel better-Val

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In a message dated 08/05/1999 10:25:10 PM Eastern Daylight Time,

lclott@... writes:

>

> This has been such a rotten few days with all the new info on Dr. B,the

> bad news for Marta,all the animals in Tenn. To add to the already

> depressing week I had to have my 16 yr old cat put to sleep today.

> I really hope I wake up from this nightmare soon.

> Thanks for letting me vent and lean on you all.

> L(MI)

Dear ,

You are right --- it has been a rotten week of bad news

for this list! It just sickens me that all this is going on. It is

horrible for you to have to lose a pet of 16 years on top of this.

I am so sorry for you and everyone on this list is who having

a tough time.

My best,

Marleen

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--- ValP74@... wrote:

> From: ValP74@...

>

>

>

> , All of my prayers go out to and

> Carlene and to all of us that

> we may fight this thing and gather enough support to

> help Dr. B. we must

> think of better days ahead Feel better-Val

>

Val-

I sent out all my letters today. Both Email and snail mail. I sure hope

it helps. We have to do whatever we can to keep him from being brought

down.

Like I said I am going to go to bed and then wake up from this

nightmare.

L(MI)

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

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Oh ,

It has been a horrible week hasn't it? So sorry about your cat. I know

how hard it is to lose a beloved pet. Thanks for making us all aware about

and Carlene's health problems. If anyone would like to write to

Carlene, here is her email address: BeanLadyC@...

Actually my problem with the Inf. Disease doctor shouldn't count as bad

news, more like typical Lyme scenario. Sure it was disappointing, but I

still have my Lyme doctor who believes my illness.

Maybe we could all send one of those internet type greeting

cards, that may help a bit. She is so young to be suffering such a serious

illness. I know she collects beanie babies, maybe someone could find a card

that features them.

Hugs,

Marta NJ

-

>From: lc lott <lclott@...>

>

>Hi all-

>I hate to add more bad news to all the latest things that have been

>posted but I really think it needs to be done.

>I dont know how many of you know or remember Carlene from this group.

>Her daughter has Lyme and has had several heart surgerys for

>the damage that was done. I have been talking to Carlene and

>has now developed Hepatitis and is being treated with Steroids as this

>is the only way to treat it I guess.

> could sure use all the prayers and thoughts we can give her

>and Carlene too. I know she doesnt get to the post very often because

>she is taking care of and she herself is ill too.

>I told her I would give everyone an update on s condition and

>ask for everyone to keep them in their prayers and thoughts.

>The docs are not very optimistic about her prognosis right now and I

>know poor Carlene is really stressed out.

>

>This has been such a rotten few days with all the new info on Dr. B,the

>bad news for Marta,all the animals in Tenn. To add to the already

>depressing week I had to have my 16 yr old cat put to sleep today.

>I really hope I wake up from this nightmare soon.

>Thanks for letting me vent and lean on you all.

> L(MI)

>

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Guest guest

Woops,

Sorry about the repeat of Carlene's address, I really have to remember to

read all my incoming mail before I reply!

Marta NJ

>From: " J & M McCoy " <mlmccoy@...>

>

>Oh ,

> It has been a horrible week hasn't it? So sorry about your cat. I know

>how hard it is to lose a beloved pet. Thanks for making us all aware about

> and Carlene's health problems. If anyone would like to write to

>Carlene, here is her email address: BeanLadyC@...

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--- J & M McCoy <mlmccoy@...> wrote:

> From: " J & M McCoy " <mlmccoy@...>

>

> Oh ,

> It has been a horrible week hasn't it? So sorry

> about your cat. I know

> how hard it is to lose a beloved pet. Thanks for

> making us all aware about

> and Carlene's health problems. If anyone

> would like to write to

> Carlene, here is her email address:

> BeanLadyC@...

> Actually my problem with the Inf. Disease doctor

> shouldn't count as bad

> news, more like typical Lyme scenario. Sure it was

> disappointing, but I

> still have my Lyme doctor who believes my illness.

> Maybe we could all send one of those

> internet type greeting

> cards, that may help a bit. She is so young to be

> suffering such a serious

> illness. I know she collects beanie babies, maybe

> someone could find a card

> that features them.

> Hugs,

> Marta NJ

> -

> Marta-

Good idea about the cards. Im sure would like that. I hope

can find the strength to pull thru this and that Carlene

doesnt wear herself down and end up even sicker.

I think the appt with the ID guy was more than a dissapointment. It is

just an example of the way things are and that is not only bad news but

also an example of all the crap we have to keep facing. Im glad you

still have your LLD and really hope you can get your IV abx soon.

I tried to keep my mind (whats left of it)busy yesterday and wrote all

my letters to help Dr. B. Thru all the tears I think I got everyone.

Hope you are feeling better and let us know how the abx are doing.

L(MI)

>

>

> Start a new ONElist list & you can WIN great prizes!

> For details on ONElist’s NEW FRIENDS & FAMILY

> program, go to

> /info/onereachsplash3.html

>

>

------------------------------------------------------------------------

> Send privately messages unrelated to lyme, please.

> /archives.cgi/

> /archives.cgi/Lyme-Documents

> Email: -digestonelist

> You may substitute " unsubscribe " , " subscribe " , or

> " normal " for

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

> " digest " ). Leave blank both the message and subject

> header.

>

_____________________________________________________________

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Guest guest

--- LymeFightr@... wrote:

> From: LymeFightr@...

>

> In a message dated 08/05/1999 10:25:10 PM Eastern

> Daylight Time,

> lclott@... writes:

>

> >

> > This has been such a rotten few days with all the

> new info on Dr. B,the

> > bad news for Marta,all the animals in Tenn. To

> add to the already

> > depressing week I had to have my 16 yr old cat

> put to sleep today.

> > I really hope I wake up from this nightmare soon.

> > Thanks for letting me vent and lean on you all.

> > L(MI)

>

>

> Dear ,

> You are right --- it has been a rotten week of

> bad news

> for this list! It just sickens me that all this is

> going on. It is

> horrible for you to have to lose a pet of 16 years

> on top of this.

> I am so sorry for you and everyone on this list is

> who having

> a tough time.

> My best,

> Marleen

> Marleen-

Thanks for your support. I know that it will all get better soon. We

all deserve a break and maybe this whole thing with Dr. B will turn out

in our favor.

I just keep telling myself that.

L(MI)

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

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Guest guest

--- Cslyme@... wrote:

> From: Cslyme@...

>

> Hi ,

> I am so sorry,

> Connie

> Connie-

Thanks for the support. He was a great friend and I will miss him alot

but he was starting to suffer and I loved him too much to let that

happen.

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

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--- Byron <F.Byron@...> wrote:

> From: " Byron " <F.Byron@...>

>

> Hi ...

>

> Saw your post on the child that has hepatitis. There

> are many things that

> can be done besides steroids...Steroids is not a

> treatment for it...just

> cuts inflammation and depresses the immune

> system...recommend she see a

> naturopathic doc or herbalist...It can be healed.

>

> Take care and my thoughts are with your loss...Byron

> Byron-

Thanks for the info and I will pass it on to Carlene.

I know that is very ill and has had alot of cardiac trouble as

well.

Thanks again,

L(MI)

> >From: lc lott <lclott@...>

> >

> >Hi all-

> >I hate to add more bad news to all the latest

> things that have been

> >posted but I really think it needs to be done.

> >I dont know how many of you know or remember

> Carlene from this group.

> >Her daughter has Lyme and has had several

> heart surgerys for

> >the damage that was done. I have been talking to

> Carlene and

> >has now developed Hepatitis and is being treated

> with Steroids as this

> >is the only way to treat it I guess.

> > could sure use all the prayers and

> thoughts we can give her

> >and Carlene too. I know she doesnt get to the post

> very often because

> >she is taking care of and she herself is

> ill too.

> >I told her I would give everyone an update on

> s condition and

> >ask for everyone to keep them in their prayers and

> thoughts.

> >The docs are not very optimistic about her

> prognosis right now and I

> >know poor Carlene is really stressed out.

> >

> >This has been such a rotten few days with all the

> new info on Dr. B,the

> >bad news for Marta,all the animals in Tenn. To add

> to the already

> >depressing week I had to have my 16 yr old cat put

> to sleep today.

> >I really hope I wake up from this nightmare soon.

> >Thanks for letting me vent and lean on you all.

> > L(MI)

> >

> >_____________________________________________________________

> >

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  • 1 year later...

...

No one bends at the waist. We actually bend at the hips.

Unfortunately, some of us don't fuse very quickly. And, any amount of

movement during the early post op period can cause screws to pull out.

I'm sorry that you're going to have to have more surgery.

When you were in the hospital the first time, didn't Dr. Koo or one of

his students come to visit you? He's the pain management specialist,

and I thought he visited all the UCSF spine patients.

Regards,

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Nope, Dr. Koo never visited me. I just saw a pharmacy person, a woman. She

would order meds, and it would take 24 hours or more to get the nurses to

give them to me. She was very frustrated at their service as was I.

At night, I asked more more meds, and they kept telling me, " Did you press

the button, press the button! " I did. Sometimes I'd ask for the Bolsa, the

" booster " they can give you, and sometimes they didn't know what I was

talking about. I never got an increase or different pain meds. The other

answer was, " we've given you everything the doctor ordered. "

I believe Dr, Koo's the guy who sent my Oxytonin prescription and neglected

to include the date. Doesn't me feel too good about seeing him now!

At 09:06 AM 02/08/2001 -0800, you wrote:

>...

>

>No one bends at the waist. We actually bend at the hips.

>

>Unfortunately, some of us don't fuse very quickly. And, any amount of

>movement during the early post op period can cause screws to pull out.

>I'm sorry that you're going to have to have more surgery.

>

>When you were in the hospital the first time, didn't Dr. Koo or one of

>his students come to visit you? He's the pain management specialist,

>and I thought he visited all the UCSF spine patients.

>

>Regards,

>

>

>

>

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Dear ,

Believe me I know what you're going through and it's hell. I am

fused to the sacrum and there is less mobility but it can be worked around

- don't let that part worry you. How far are you fused now? Before they

fused me to the sacrum I was fused to L4, and the 2 extra vertebrae made

some difference, but as I just said, please don't consider that a worry. At

least to me, it just hasn't made that much difference.

As for the three very bad days you went through, think of it this

way: now you know what to expect, you have a pain specialist, and you know

you don't need to be a hero and when to say " Owww " (or " Aia " as we say here

in Italy) - so those days shouldn't be so awful. Also the surgeon is going

to be doing a lot less to you, so the op should be shorter and less

traumatic and thus probably less painful. And it will resolve your problem.

I too had trouble with a loose screw, or rather a screw that was

pressing a nerve. They took out all the hardware and put it back in in

basically the same places but used a shorter screw to substitute the one

that was causing me trouble. As in your case, it was the fusion to the

sacrum that made the difference.

I don't think you're going to be where you were in December but it

would be lying to say it's not a bit of a set-back. It's no fun to take

these blows - but know that we are here, our shoulders are broad and any

time you want to scream, just write it out. You'll be better sooner than

you think. Really.

All the best,

from Italy

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I think I'm fused to L5 or more now (the surgery Dec. 7 included fusing

several lower vertibrae, so I'm not sure now)

Oh, my God, they took out all the hardware???? Was that as painful as

putting it in?

I'm planning on having that done eventually...

Why did they replace the screw with a shorter one, and then fuse to the

sacrum as well?

How long was the recovery time for you? I'm supposed to be another week in

the hospital (no rehab center I suppose, like last time, I'm too " young " !)

I remember 3 days of hell, and then 2 days of throwing up every morning,

unable to keep anything down until late in the evening...not fun.

in the East Bay

At 10:40 AM 02/09/2001 +0200, you wrote:

>Dear ,

>

> I too had trouble with a loose screw, or rather a screw that was

>pressing a nerve. They took out all the hardware and put it back in in

>basically the same places but used a shorter screw to substitute the one

>that was causing me trouble. As in your case, it was the fusion to the

>sacrum that made the difference.

> I don't think you're going to be where you were in December but it

>would be lying to say it's not a bit of a set-back. It's no fun to take

>these blows - but know that we are here, our shoulders are broad and any

>time you want to scream, just write it out. You'll be better sooner than

>you think. Really.

> All the best,

> from Italy

>

>

>

>

>

>

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I am not sure what they recommend anymore in terms of removing old

hardware. In my experience it was definitely a lot easier having it

removed. I had things taken out in two operations spread apart by 12

years though. I still have a rod left and a bunch of junk, like wire,

left in there and I have never found out why. The last orthopaedic

surgeon that looked at it thought it was probably so embedded in the

bones that it couldn't be taken out without resorting to drastic

measures. The wire and junk shows up on x-rays and it was an x-ray

technician that showed me all the stuff that was there. The

instrumentation that I had were Harrington rods, etc.

> Oh, my God, they took out all the hardware???? Was that as painful

as

> putting it in?

>

> I'm planning on having that done eventually...

>

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  • 2 months later...
Guest guest

Gail,

Brook is always on Augmentin. That's our standard med for him. The other

antibiotics just don't seem to work for him. Usually we go 3 weeks. We get

the chewable tablets because he won't take the liquid and we crush them and

add them to chocolate pudding. We just got him off of 4 weeks and it doesn't

give him diarrhea. He gets a lot of sinus infections and ear infections which

lead to bronchitis etc. Brook takes 600 mg twice a day I believe. Hope

everyone feels better soon.

We just got some bad news about my grandmother. She is 101 years old and

she has Alzheimer's disease. She has been sleeping a lot lately and developed

pressure sores or her feet. The visiting nurse came out to debride her feet

and take care of her. She is in a small private rest home. But now, the

visiting nurse wants to call in the hospice nurses to make her more

comfortable. It sounds like the end is near. I just hope she goes peacefully

and doesn't feel any pain.

Marisa

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Guest guest

Prayers and hugs Marisa for you and that your Grandma has a very peaceful,

pain free death. I lost both of mine now and I still miss them a lot.

Gail

<< We just got some bad news about my grandmother. She is 101 years old and

she has Alzheimer's disease. She has been sleeping a lot lately and

developed

pressure sores or her feet. The visiting nurse came out to debride her feet

and take care of her. She is in a small private rest home. But now, the

visiting nurse wants to call in the hospice nurses to make her more

comfortable. It sounds like the end is near. I just hope she goes peacefully

and doesn't feel any pain.

Marisa >>

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Guest guest

marisa,

i am so sorry to hear about your grandma...i hope if it is her time to go

that she is peaceful and without misery..... prayers and hugs coming your

way!!! tc leah

ps cameron is always on augmentin too.... ashton on the other hand is

totally allergic to it and only takes vantin or rocephin shots....

>From: poggim@...

>Reply-

>

>Subject: Re: More bad news

>Date: Thu, 19 Apr 2001 18:11:27 EDT

>

>Gail,

> Brook is always on Augmentin. That's our standard med for him. The other

>antibiotics just don't seem to work for him. Usually we go 3 weeks. We get

>the chewable tablets because he won't take the liquid and we crush them and

>add them to chocolate pudding. We just got him off of 4 weeks and it

>doesn't

>give him diarrhea. He gets a lot of sinus infections and ear infections

>which

>lead to bronchitis etc. Brook takes 600 mg twice a day I believe. Hope

>everyone feels better soon.

> We just got some bad news about my grandmother. She is 101 years old and

>she has Alzheimer's disease. She has been sleeping a lot lately and

>developed

>pressure sores or her feet. The visiting nurse came out to debride her feet

>and take care of her. She is in a small private rest home. But now, the

>visiting nurse wants to call in the hospice nurses to make her more

>comfortable. It sounds like the end is near. I just hope she goes

>peacefully

>and doesn't feel any pain.

>Marisa

>

>

>

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Guest guest

In a message dated 4/19/01 6:46:47 PM Eastern Daylight Time, poggim@...

writes:

> We just got some bad news about my grandmother. She is 101 years old and

> she has Alzheimer's disease. She has been sleeping a lot lately and

> developed

> pressure sores or her feet.

Gosh, I'm sorry Marisa. It's hard to lose the ones we love no matter what

age they are!! {{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}} I hope she goes very

peacefully, in her sleep!!

DOnna

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Guest guest

Marissa,mY prayers for your grandma and you. Hospice is great ,they were there

for my mother 4years ago and i still remember the love and caring they lavished

on her.I had said one day that her hands looked so bad ,from all the finger

sticks,and two days later her aide had given her a manicure.Such a small thing

really but it meant the world to me for mom s hands to look like they always

did. Carole

poggim@... wrote:

Gail,

Brook is always on Augmentin. That's our standard med for him. The other

antibiotics just don't seem to work for him. Usually we go 3 weeks. We get

the chewable tablets because he won't take the liquid and we crush them and

add them to chocolate pudding. We just got him off of 4 weeks and it doesn't

give him diarrhea. He gets a lot of sinus infections and ear infections which

lead to bronchitis etc. Brook takes 600 mg twice a day I believe. Hope

everyone feels better soon.

We just got some bad news about my grandmother. She is 101 years old and

she has Alzheimer's disease. She has been sleeping a lot lately and developed

pressure sores or her feet. The visiting nurse came out to debride her feet

and take care of her. She is in a small private rest home. But now, the

visiting nurse wants to call in the hospice nurses to make her more

comfortable. It sounds like the end is near. I just hope she goes peacefully

and doesn't feel any pain.

Marisa

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