Hello/Introduction

January 6, 2002

Hi, Joy!

Welcome to the list!

Sounds like you have your hands full! This list is a wonderful

place--for support, knowledge, and friendship!

Sue mom to Kate 12 and Karrie 5 w/ds

I'll keep you all in my thoughts and pray for a healthy outcome

January 6, 2002

Thanks for the welcome:-) and thank you Sue for the

information about Sandy. It's always nice to hear

someone's close by like that and has " been there and

done that " . Thank you again. Take care and God Bless.

Look forward to reading the posts.

Joy:-)

__________________________________________________

January 7, 2002

welcome,

I have a too. He's 19. Mt son has DS. He has a repaired AVSD and

USED to have seizures (knocking on wood), he was on Depekote for 2 years and

has been off since April with no seizures.

Now his eye Dr found a potential problem and we were scheduled for an MRI last

Wednesday but it was cancelled because he had a cold. She said his optic nerves

seemed elevated or swollen which is a sign of pressure on the brain so we are

checking for a tumor or excessive fluid.

Looking forward to getting to know you better.

Di, mom to Jake(19,nda) and 4 (DS)

Pennsylvania

Hello/Introduction

Hi,

My name is Joy, Mom to who has DS. I am

hoping to gain more knowledge and support by joining

this group and am hoping to help and offer support to

others too:-)

I have 6 children (7 including my foster son). 4 of

my children are by birth and 2 are by adoption. We are

waiting for at least one more to adopt. is 4

months old and is an absolute doll. We are very

blessed to be his parents. He has Tetralogy of

Fallot-unrepaired, Seisure Disorder, Severe Reflux,

and had a BT Shunt @17 days old. He's scheduled to see

the cardiologist and the cardio-thoracic surgeon on

the 8th where we hope to have more information as to

when they think he should have his repair. We have had

some problems with Pulmonary Adema (which we are

waiting to see if it was really this or RSV, which

they say look the same on x-ray?) and he's had some

repiratory problems. We just saw the pediatrician

yesterday and he put him on more medication (now he's

on 8 different medications-ughhh)but hopefully it will

all help him out so he isn't struggling to

breathe-some meds are for other things too. He had

testing for RSV, but those tests aren't back yet. For

now, they are calling it Bronchialitis (not sure what

the difference is between that and Bronchitis) so we

will just wait and see how he does. It's been many

trips to Children's Hospital and to the pediatricians

office, but I am sure you all have gone through this

too:-) I hope and pray all goes well. We are in the

Columbus, Ohio vacinity so we go to Columbus

Children's Hospital for almost everything. I have been

seriously considering going to Cleveland though. Does

anyone have any experience with either? and if so,

What is your opinion? Thank you for letting me

indroduce myself, I am looking forward to getting to

know all of you. Take care and God Bless,

Joy

Mom to andra(14), Neils(13), Lee(11), (8),

Meredith(16months), (4months), and (8) and

waiting for at least one more to adopt:-)

__________________________________________________

January 21, 2002

Welcome Joy! Sandy O'Hare is from Columbus, Ohio, too. Her daughter had a

variety of medical problems when she was young..but is now doing great! Email

Sandy (in case she doesn't see this) at Gwhiz@.... I'm betting Sandy will

be your best resource

July 24, 2007

You poor thing. I have never come across a health insurance company

that will cover the cost of the surgery and not the PT afterwards as

this is so crutial within the first few weeks. It is much better to

have a PT to do exercises with as they change and add to the

exercises that you do as you improve.

I am also surprised that you have gone back to a job where you stand

a lot at the 6 week mark. Was this ok with your surgeon, as he wont

have seen how you are coping? I certainly couldnt have gone back to

work at 6 weeks, I even had to go back into hospital at 5 weeks to

have my knee bent under anaesthetic, due to lack of expected bend and

straightening. If you are a lot of pain at work I would ask your

surgeon if it is a good idea to be working at all at the moment, as

you dont want to be doing too much and undo all the good the surgery

will have done you.

It takes quite a long time to recover completetly and also if you

are at work you will not have much time to do the exercises that need

to be done on an ongoing basis to keep the bend, as you can in the

initial few months lose that so easily. As you said the more you work

the knee the better it feels.

How about pain meds?? Are you taking them to try to keep you out of

pain on an even level. If the pain is going up and down where you

are fine some times and in a lot of pain others, then possibly your

pain meds need a review also. You need to be completely out of pain

all the time, as this makes recovery quicker and better.

Please do check that its ok to be at work already when you see your

surgeon tomorrow and also mention about the pain you are in.

Marilyn (UK)

>

> Hello everyone! My name is Eileen and I live in Clinton, MD. On

June

> 8th I had my left knee replaced. Since I had the knee cap removed 8

> years earlier, I had always been told I would never be able to have

a

> knee replacement however, I found a wonderful doc in VA and began to

> have him help me with my knee issues. Between both knees, I have

had

> over 20 surgeries. I had been seeing this doc for about 4 years

when my

> left knee had become such an issue that I was not only falling due

to

> the knee twisting but I was in such severe pain that in the last two

> years my life had just become a misery.

>

> A week before my 45th birthday I had the surgery. Although I no

longer

> had a knee cap, I found out that I could in deed have a total joint

> replacement, they would just use a different prosthesis's. I am

> currently at 6 weeks post op. To keep this email from getting too

long,

> I will just say that I have ended up doing all my PT on my knee by

> myself. the PT folks worked with me in the hospital but when I came

> home, I found out my insurance would not pay for PT. Waiting for my

> disability check to come in, I had to make the decision to do all

the

> exercises on my own. The PT in the hospital felt I would be fine

doing

> it since I had done so well after surgery but a big part of me

wishes I

> had the support of a PT pro to tell me I am doing things right and

that

> I am progressing the way I should be. I guess you could say I feel

very

> alone.

>

> I see my doc tomorrow for my 6 week follow up (I returned to work

today

> since the surgery and I must say the pain from my knee was so

bad... I

> am on my feet a lot at work and I guess my knee did not like all

the up

> and downs I was doing... I have been walking with a cane since day

3 of

> the surgery and a lot of time walk with no cane however, the doc

told me

> as long as I have a limp, I must use the cane... so I try to do

that.

>

> I feel so frustrated that I am still having such stiffness and pain

(

> the more I work it, the better that is) and I must also say that I

feel

> so very alone. I found this group and have begun to read the

posts.. it

> is nice for me to see that many of the feelings and things that I am

> going through..others are also.

>

> Thanks for having this group to come to. I truly appreciate it and

feel

> less alone.

> Eileen

>

> Eileen Ann Edelblute

> AKC Certified Canine Good Citizen Evaluator

> Meet my boy Jack

> http://mysite.verizon.net/vze88xkr/

>

July 24, 2007

Eileen,

When you had the TKR did they give you a replacement knee cap? It would seem you need something there. With mine, of course, since I had a kneecap, they resurfaced the back of it.

I was able to have outpatient PT on my insurance and it was good for me since I'm not very disciplined. Do you have access to a gym (I go to Curves) or a fitness center with a pool. I would suggest now for you to use machines and maybe water aerobics to help further your PT on your own.

I'm sorry you had to be back on your feet so soon. I am lucky and work from home, though I found sitting at a computer a bit daunting at first. Now I'm six months out and can't tell you how much better I feel. I still have some stiffness and occasional swelling but I can finally walk like I used to before pain started five years ago.

Six weeks out and you sound like you are doing great. Keep icing your knee. I know I would wear knee-high TED hose in the evenings to combat swelling and it would be gone by next morning.

-----Original Message-----From: Joint Replacement [mailto:Joint Replacement ]On Behalf Of Eileen EdelbluteSent: Monday, July 23, 2007 11:55 PMJoint Replacement Subject: Hello/Introduction

Hello everyone! My name is Eileen and I live in Clinton, MD. On June 8th I had my left knee replaced. Since I had the knee cap removed 8 years earlier, I had always been told I would never be able to have a knee replacement however, I found a wonderful doc in VA and began to have him help me with my knee issues. Between both knees, I have had over 20 surgeries. I had been seeing this doc for about 4 years when my left knee had become such an issue that I was not only falling due to the knee twisting but I was in such severe pain that in the last two years my life had just become a misery.

A week before my 45th birthday I had the surgery. Although I no longer had a knee cap, I found out that I could in deed have a total joint replacement, they would just use a different prosthesis's. I am currently at 6 weeks post op. To keep this email from getting too long, I will just say that I have ended up doing all my PT on my knee by myself. the PT folks worked with me in the hospital but when I came home, I found out my insurance would not pay for PT. Waiting for my disability check to come in, I had to make the decision to do all the exercises on my own. The PT in the hospital felt I would be fine doing it since I had done so well after surgery but a big part of me wishes I had the support of a PT pro to tell me I am doing things right and that I am progressing the way I should be. I guess you could say I feel very alone.

I see my doc tomorrow for my 6 week follow up (I returned to work today since the surgery and I must say the pain from my knee was so bad... I am on my feet a lot at work and I guess my knee did not like all the up and downs I was doing... I have been walking with a cane since day 3 of the surgery and a lot of time walk with no cane however, the doc told me as long as I have a limp, I must use the cane... so I try to do that.

I feel so frustrated that I am still having such stiffness and pain ( the more I work it, the better that is) and I must also say that I feel so very alone. I found this group and have begun to read the posts.. it is nice for me to see that many of the feelings and things that I am going through..others are also.

Thanks for having this group to come to. I truly appreciate it and feel less alone.

Eileen

Eileen Ann Edelblute

AKC Certified Canine Good Citizen Evaluator

Meet my boy Jack

http://mysite.verizon.net/vze88xkr/

July 25, 2007

Just an FYI... You can pay out of pocket for Physical Therapy in some states, especially if your PT has direct access. You may only be able to afford one or two visits but at least the PT can give you some direction in your recovery if your insurance company doesn't cover it. In some cases, if you really have NO direction, you can contact your state's Physical Therapy association and ask for some guidance. Everyone is great at usiing their resources so we wanted to give you a few more! Good luck! Alisa Site Moderator Alisa Curry, RPT - Senior Physical Therapist Washington Hospital Center for Joint Replacement - Fremont , CA

“A verse from the Veda says, 'What you see, you become.' In other words, just the experience of perceiving the world makes you what you are. This is a quite literal statement.” ~ Deepak Chopra

July 25, 2007

Eileen

Here is a book I highly recommend.

" Total Knee Replacement and Recovery "

By Dr. Brugioni MD and Dr. Jeff Falkel Ph.D, PT.

Dr. Falkel had both knees done and he is an orthopedic doctor. So you

are getting info from both sides of the knife so to speak. The book is

organize in a time line order starting before, during and after the

operation. It take you out to a year after the operation.

As far as the insurance not paying you should have you doctor insisted

that not only is this the standard but that they are liable for not

providing you the minimum of care. I would even contact a lawyer to

see what he thinks. You have to (unfortunately) battle these idiots

and demand that you get the coverage that you are paying for. Tell

them that PT after a major operation like this is the norm. The

question is how long and whether it is at home or at a clinic or both.

Most have someone coming to there house for the time right after they

get out of the hospital and then they start going to a clinic for a

time after that. It can be from a couple of months to six months that

is the variable not no PT at all. Part of the PT is getting your leg

to bend and straighten. You should be able to completely straighten

your leg and you should be able to bend your leg well past 90 degrees.

I was told anything past 110 was OK. Strengthening the muscles is

the other part of PT.

I also believe you should not have gone back to work as soon as you

did. At six weeks you can't be on you feet all day. You are feeling

the results of that now. If the job can let you set while you are

doing your work that would be one thing but not on your feet. It

takes up to six months for the bone to grow and heal from the

operation. I was told to us a cane when walking outside for the first

six months because the doctor did not use any adhesive. Instead the

bone grows into a honey come structure in the metal of the new knee.

You may not have that but the bone is still healing at six weeks and

stressing it by walking and standing is not helping and IMO it will

take longer for it to heal. I am not a doctor but I had polio when I

was little so I have been around doctors all my life.

Don

>

> Hello everyone! My name is Eileen and I live in Clinton, MD. On June

> 8th I had my left knee replaced. Since I had the knee cap removed 8

> years earlier, I had always been told I would never be able to have a

> knee replacement however, I found a wonderful doc in VA and began to

> have him help me with my knee issues. Between both knees, I have had

> over 20 surgeries. I had been seeing this doc for about 4 years when my

> left knee had become such an issue that I was not only falling due to

> the knee twisting but I was in such severe pain that in the last two

> years my life had just become a misery.

>

> A week before my 45th birthday I had the surgery. Although I no longer

> had a knee cap, I found out that I could in deed have a total joint

> replacement, they would just use a different prosthesis's. I am

> currently at 6 weeks post op. To keep this email from getting too long,

> I will just say that I have ended up doing all my PT on my knee by

> myself. the PT folks worked with me in the hospital but when I came

> home, I found out my insurance would not pay for PT. Waiting for my

> disability check to come in, I had to make the decision to do all the

> exercises on my own. The PT in the hospital felt I would be fine doing

> it since I had done so well after surgery but a big part of me wishes I

> had the support of a PT pro to tell me I am doing things right and that

> I am progressing the way I should be. I guess you could say I feel very

> alone.

>

> I see my doc tomorrow for my 6 week follow up (I returned to work today

> since the surgery and I must say the pain from my knee was so bad... I

> am on my feet a lot at work and I guess my knee did not like all the up

> and downs I was doing... I have been walking with a cane since day 3 of

> the surgery and a lot of time walk with no cane however, the doc told me

> as long as I have a limp, I must use the cane... so I try to do that.

>

> I feel so frustrated that I am still having such stiffness and pain (

> the more I work it, the better that is) and I must also say that I feel

> so very alone. I found this group and have begun to read the posts.. it

> is nice for me to see that many of the feelings and things that I am

> going through..others are also.

>

> Thanks for having this group to come to. I truly appreciate it and feel

> less alone.

> Eileen

>

> Eileen Ann Edelblute

> AKC Certified Canine Good Citizen Evaluator

> Meet my boy Jack

> http://mysite.verizon.net/vze88xkr/

>

July 26, 2007

Absolutely, and even one or two sessions will give you enough

information to do the exercises and do them correctly. Also, there

are web sites that show you post-op exercises for joint replacemnts,

sometimes orthopedic surgeon's sites have links.

Deb

>

> Just an FYI...

>

> You can pay out of pocket for Physical Therapy in some states,

especially if your PT has direct access. You may only be able to

afford one or two visits but at least the PT can give you some

direction in your recovery if your insurance company doesn't cover

it. In some cases, if you really have NO direction, you can contact

your state's Physical Therapy association and ask for some guidance.

>

> Everyone is great at usiing their resources so we wanted to give

you a few more!

>

> Good luck!

>

> Alisa

> Site Moderator

>

> Alisa Curry, RPT - Senior Physical Therapist

> Washington Hospital Center for Joint Replacement - Fremont , CA

>

> " A verse from the Veda says, 'What you see, you become.' In

other words, just the experience of perceiving the world makes you

what you are. This is a quite literal statement. "

> ~ Deepak Chopra

>

January 20, 2008

Greetings all,

My name is and I just joined this group. I was first diagnosed with

Lyme in 2001 several months after my tick bite and EM rash. I just didn't know

what it was. I was having knee and hip pain and bad fatigue at the time. I

ended up going on a very short ( I believe ) 7 day course of doxycycline and was

told I was fine. That started what I now know as my downward spiral into

chronic lyme. Over the years, I have suffered with various symptoms and sought

help but to no avail. This l ast year got really scarey and my hubby finally

made me see a doctor again. (I'm somewhat doctor phobic since it's been such a

waste of money and no help) This doc tested for lupus, MS, RA, and some other

things but all came back negative. What he did suspect was lyme. Lyme? I was

shocked! I shared with him my experience with lyme in 2001 and he thought

perhaps a new bite had exacerbated old symptoms or reintroduced new infection.

That was in October 2007. I went on an aggressive herbal therapy since then but

things continue to go downhill. I am in pain most of the time and during the

last year, have developed both nuerological things which seem like mini strokes

with numbness and tingling in my mouth, tongue and lower face as well as both

arms/hands but not always. This only last minutes at a time but leaves me weak

and my arms feel like lead. And some scarey things have been going on with my

heart....it flip flops hard in my chest and leaves me feeling like I just had

the wind knocked out of me. Occassionally it races and I can't seem to catch my

breath. It's wierd, at night, when I lay down, my breathing starts coming in

gasps like I can't get enough air. Last night I started and my hubby gave me

his breathing machine mask for sleep apnea which did seem to help as it blows

oxygen hard into your nostrils. So much of this doesn't seem like it should be

related but I am learning. I know ignorance is not bliss but some of the things

I am learning are scarey too!

Well, I feel I have written too long. Aside from all that, I am a wife to

, my best friend and mother to Zachary who is 16. Our family lives in

MIssouri where we live on a small farm and raise animals - cows, pigs, chickens,

turkeys, ducks and geese.

thank you for letting me join,

Helpmeet to my beloved

Mother to Zachary

www.hopehavenhomestead.com

January 21, 2008

: Very good introduction and story - a lot like mine. Your best idea

now would be to find as soon as you can a Lyme Literate Medical Doctor (LLMD)

and also be tested for co-infections (as some of your symptoms sound like them),

for example, Babesiosis and or ehrlicheosis (human granular, possible) or

others. This is especially true as regarding the heart irregularity and

sleeping problems. The short term antibiotics you had was totally inadequate

and much too short. That was a mistake and you now have it in your system. Ask

this group and anyone else on the lyme community and lyme web sites for a LLMD

right away.

Peace and Better Health: -- Glen

ps) with good treatment you will improve, believe me, but it will be slow. You

are blessed to have a husband and a son. Their love are essential to you.

[ ] Hello/Introduction

Greetings all,

My name is and I just joined this group. I was first diagnosed with

Lyme in 2001 several months after my tick bite and EM rash. I just didn't know

what it was. I was having knee and hip pain and bad fatigue at the time. I ended

up going on a very short ( I believe ) 7 day course of doxycycline and was told

I was fine. That started what I now know as my downward spiral into chronic

lyme. Over the years, I have suffered with various symptoms and sought help but

to no avail. This l ast year got really scarey and my hubby finally made me see

a doctor again. (I'm somewhat doctor phobic since it's been such a waste of

money and no help) This doc tested for lupus, MS, RA, and some other things but

all came back negative. What he did suspect was lyme. Lyme? I was shocked! I

shared with him my experience with lyme in 2001 and he thought perhaps a new

bite had exacerbated old symptoms or reintroduced new infection. That was in

October 2007. I went on an aggressive herbal therapy since then but things

continue to go downhill. I am in pain most of the time and during the last year,

have developed both nuerological things which seem like mini strokes with

numbness and tingling in my mouth, tongue and lower face as well as both

arms/hands but not always. This only last minutes at a time but leaves me weak

and my arms feel like lead. And some scarey things have been going on with my

heart....it flip flops hard in my chest and leaves me feeling like I just had

the wind knocked out of me. Occassionally it races and I can't seem to catch my

breath. It's wierd, at night, when I lay down, my breathing starts coming in

gasps like I can't get enough air. Last night I started and my hubby gave me his

breathing machine mask for sleep apnea which did seem to help as it blows oxygen

hard into your nostrils. So much of this doesn't seem like it should be related

but I am learning. I know ignorance is not bliss but some of the things I am

learning are scarey too!

Well, I feel I have written too long. Aside from all that, I am a wife to

, my best friend and mother to Zachary who is 16. Our family lives in

MIssouri where we live on a small farm and raise animals - cows, pigs, chickens,

turkeys, ducks and geese.

thank you for letting me join,

March 30, 2011

From: Anne <jasmom_99@...>Subject: Hello/IntroductionLipitor-owner Date: Wednesday, March 30, 2011, 7:50 PM

Hi...my name is (age 48) and I wanted to take a minute to introduce myself and get your input. I have been on statins for the last 10 years. I have mixed combined familial hypercholestrolemia. My father died of a MI at age 47 and my bother at 40. I had always been on Zocor 20mg until 2009 when I failed a calcium scoring test. I was in the 98th % for my age. I was sent to a cardiologist who did a stress echo (which was perfect) and on to a lipid specialist to monitor my statins. He initialy switched me to Crestor 10mg and then to 20mg and tried adding Zetia 10mg. About 6 weeks after starting the Crestor I began suffering from severe back spasms. I also have autoimmune diseases and it was blamed on arthritis. I argued with every dr who would listen but only my rheumatologist thought it might be the statin. For one long year I suffered. I went to physical therapy, pain clinics for steroid injections in my

spine, took high dose NSAID's and muscle relaxants .I had several MRI's and even a bone scan. Finally my CPK level rose from my baseline of 50 to 2600. I was taken off the statin but the lipid specialist wanted to reintroduce it again...still not believing it was his precious statin. I was statin free for 4 months and I slowly improved. I am still recovering but am much much better.

I went and saw my internist and she ordered a cat scan angiogram of my heart. It showed 25-50% blockages in 3 main arteries and plaque (undetermined amount) in several smaller. She and my cardiologist both insisted I must go back to the lipid dr but not to EVER take Crestor. Well that is EXACTLY what he put me back on...so I left. I found my own lipid specialist and he put me back on my Zocor. I am currently awaiting my lipid profile but my CPK came back at 70...so that is good. One thing I was concerned with is theserum globulin level was slightly low and I will discuss this with him (gosh I hope my kidneys are ok).

I still have some mild low back pain and I wear a lidocaine pach for that. OccasionallyIi feel the huge back spasms come back...usually after a big workout.

I now take CoQ10 200mg daily and skip statins altogether about twice week to give my body a break.

I guess my question to you all is what else can I do to control my progressive CAD. I take fish oil 2x/day, eat a very strict diet , exercise regularly, take psyllium capsules and am slim.

I have made an appt for consultations with a holistic type dr and that is coming up in two weeks...and an appt at our university hospital for alternative treatments.

Thanks for reading

March 30, 2011