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Hi Ellana. Welcome to our group. There are many of us here that had no

definite diagnosis. Autoimmune diseases are not easy to diagnose, since

there is not just a specific test. It really *DOES* matter which one you

have because they are treated differently and affect different systems of

the body. Can you tell us what tests have been done? I'm assuming that

since you're being treated for lupus, there must be some indication of lupus

by the tests that have been done so far.

http://www.rasupport.webprovider.com/

is our web site that Judy has put together for us. It is a good starting

point and has information on testing done for diagnosis of AI diseases. I

know how scary it is not knowing what is wrong. You did the right thing by

going to a new doctor. Many of us have gone to several doctors before

finding one that both helps and we feel comfortable with. It is a good idea

to get copies of all your tests. If you move on to another doctor, you will

have them.

I am 45 and was diagnosed with RA while in my 20's. I'm on the new med

Enbrel and it is helping me so much that I recently returned to school part

time. It took many years and many drugs to get me to this point. They have

made great advances in the treatment of autoimmune diseases, so hang in

there.

a

----- Original Message -----

From: Ellana L. e <eclarke@...>

< egroups>

Sent: Wednesday, June 21, 2000 9:12 PM

Subject: [ ] Newly Diagnosed

> Good Evening............my name is Ellana. I live in Michigan and

yesterday my new doctor reported that my test results say I have an

" autoimmune disease " . Not sure yet which one but it really doesn't

matter......does it?

>

> I haven't been feeling well for several years (insomnia, joint ache,

nausea, depression, headaches, sweats, stressed, memory lapses, weight gain,

moody, no sex drive, etc.). My doctor back then just treated the symptoms

(pills and more pills) but never sought the cause. I finally said enough was

enough. Took myself off everything and set about finding a doctor that would

really 'listen' to me. Found one. She took blood tests and the rest is

history.

>

> I scared, frightened and angry. She put me on medication for Lupus and

malaria until the next set of tests come back. She said she would listen to

anything I had to say and would do any tests I requested. Can anyone else

help?

>

> Ellana

> Ellana L. e

> eclarke@...

>

>

>

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Thank you a. As soon as the next set of tests are back, maybe I will

know more.

Ellana

----- Original Message -----

From: " a " <aA@...>

<egroups>

Sent: Thursday, June 22, 2000 3:17 PM

Subject: Re: [ ] Newly Diagnosed

> Hi Ellana. Welcome to our group.

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  • 5 years later...
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----- Original Message -----

From: rosalieanne

>Are there other programs I should look into for help if this Foundation turns me down?

When I checked, I didn't find any that requirements that were easier to meet. I have only Medicare and with them paying part, Enbrel would still cost me $3900 deductible, $250 per prescription plus 25% of total actual drug cost (which without any insurance or Medicare help is about $6000 total per month). I can't tell you if they work or not because I simply cannot afford those costs.

Good luck and be glad you've got insurance!

Nina

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Hi,

Tuesday I'm starting a screening for a 3 month Humira study. During my

3 months study they will send off papers for me to get help with the

costs. I don't expect to get help as we have insurance and it will cost

me $50 a month. For approx. 3 months all costs are covered and you get

the medication for free during that time. Here is a link for the study

in case you want to go w/Humira:

http://www.centerwatch.com/patient/studies/stu69185.html or you can ask

your doctor about the HERO Study.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

rosalieanne wrote:

>I am a 55 year old woman recently diagnosed with RA. Just started

>methotrexate last week. Have been looking into Humira, Enbrel and

>Remicade. Remicade will cost us $600 per treatment because it is

>not a formulary drug under our insurance. Humira is a littel better

>but will cost $664 for a 3 month supply.

>

>Only Enbrel is a forumlary drug so our cost will be just $75 for 3

>months. I've applied for funding through the HealthWell Foundation

>so I can get the Remicade treatments. If I don't qualify I will

>have to use Enbrel since my husband and I cannot afford the more

>expensive drugs.

>

>Are there other programs I should look into for help if this

>Foundation turns me down?

>

>Does Enbrel really work for many people if I have to go that route?

>

>Any information will be most welcome.

>

>Posie in MI

>

>

>

>

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That's outrageous...I don't know many that

could afford those costs either. Someone told me when the patent is up

the costs will drop? I am not sure if that's true or not tho, but

hopefully sometime these medications will go down so that people can

get help they need.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

Nina wrote:

----- Original Message -----

From:

rosalieanne

>Are there other programs I should look into for help if this

Foundation turns me down?

When I checked, I didn't find

any that requirements that were easier to meet. I have only Medicare

and with them paying part, Enbrel would still cost me $3900 deductible,

$250 per prescription plus 25% of total actual drug cost (which without

any insurance or Medicare help is about $6000 total per month). I

can't tell you if they work or not because I simply cannot afford those

costs.

Good luck and be glad you've got

insurance!

Nina

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Hi Nina

I saw the posters and pamphlets all over my RA's office in

Orlando....so I'd assume that you could just call your doctor and ask

about the study. That was just one link I found w/some info on it.

Everything that I will be doing for the 3 months will be done by my

doctor and the study nurse in Orlando.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

Nina wrote:

----- Original Message -----

From: Maggie

http://www.centerwatch.com/patient/studies/stu69185.html

Those visits you have to make, do you have to go to Sugarland or can your

own rheumy do whatever is needed?

Nina

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----- Original Message -----

From: Maggie

> That's outrageous...I don't know many that could afford those costs either. Someone told me when the patent is up the costs will drop? I am not sure if that's true or not tho, but hopefully sometime these medications will go down so that people can get help they need.

I think patents last at least 10 years. I don't think I can wait that long. :-( Right now I'm on prednisone, have pneumonia and a pinched nerve or something in my back/shoulder. Dog says it's inflammation from coughing and the RA involved. Can't remember the last time I was in so much pain. Got a Kenalog shot day before yesterday and it hasn't helped at all.

I understand that making a new drug may cost $4M. I just didn't expect to pay the bulk of that out of my pocket. LOL

Nina

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----- Original Message -----

From: Maggie

> I saw the posters and pamphlets all over my RA's office in Orlando....so I'd assume that you could just call your doctor and ask about the study. That was just one link I found w/some info on it. Everything that I will be doing for the 3 months will be done by my doctor and the study nurse in Orlando.

Thanks! I emailed them from the site and I'm off here right now to call my doc. He wanted me on Enbrel because he thinks it does the least amount of damage to the liver (I have primary biliary cirrhosis, an autoimmune disease that destroys the bile ducts). That's why I can take methotrexate.

I've had two people lately tell me that you can soak white grapes or golden raisins in gin and eat 9 of those per day and it will practically cure RA. Well, I am not a believer in that kind of stuff at all. But I'm getting so desperate, I'm going to try it! Worst case scenario, I'll throw the grapes away and drink the gin and maybe at least I'll forget the pain. LOL, just kidding!

Nina

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Good luck Nina...I hope you can get some

help cuz it sounds like you are in horrible pain w/the pneumonia and

all....if you get to try Humira and it works for you...hopefully you

can get funding for it. Fingers crossed for you!

..~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

Nina wrote:

Thanks! I emailed them from the site and I'm off here right

now to call my doc. He wanted me on Enbrel because he thinks it does

the least amount of damage to the liver (I have primary biliary

cirrhosis, an autoimmune disease that destroys the bile ducts). That's

why I can take methotrexate.

I've had two people lately tell me that you can soak white

grapes or golden raisins in gin and eat 9 of those per day and it will

practically cure RA. Well, I am not a believer in that kind of stuff

at all. But I'm getting so desperate, I'm going to try it! Worst case

scenario, I'll throw the grapes away and drink the gin and maybe at

least I'll forget the pain. LOL, just kidding!

Nina

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----- Original Message -----

From: Maggie

> I saw the posters and pamphlets all over my RA's office in Orlando....so I'd assume that you could just call your doctor and ask about the study. That was just one link I found w/some info on it. Everything that I will be doing for the 3 months will be done by my doctor and the study nurse in Orlando.

I just spoke with my doc's office and she said you have to go to Sugarland for the visits. So that's out of the question for me. I do live in TX, but it's way too far to Houston from where I am (almost in Oklahoma). So I made an appt. for the 27th to talk to him about what else we can possibly do. I'm all for trying the methotrexate. I'd rather have one good year left than 10 like the last one. The reason I have pneumonia right now is because my husband came home with a cold and with me taking so much prednisone, I have no immune system left.

Nina

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I'm on Remicade because Medicare is my primary insurance and they won't pay anything for the others. From what I have heard all three are about equally effective on average but different ones work better for different people. I suggest going with what you can afford. God bless.

----- Original Message -----

From: rosalieanne

Rheumatoid Arthritis

Sent: Wednesday, July 20, 2005 8:36 AM

Subject: Newly Diagnosed

I am a 55 year old woman recently diagnosed with RA. Just started methotrexate last week. Have been looking into Humira, Enbrel and Remicade. Remicade will cost us $600 per treatment because it is not a formulary drug under our insurance. Humira is a littel better but will cost $664 for a 3 month supply.Only Enbrel is a forumlary drug so our cost will be just $75 for 3 months. I've applied for funding through the HealthWell Foundation so I can get the Remicade treatments. If I don't qualify I will have to use Enbrel since my husband and I cannot afford the more expensive drugs.Are there other programs I should look into for help if this Foundation turns me down?Does Enbrel really work for many people if I have to go that route?Any information will be most welcome.Posie in MI

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----- Original Message -----

From: Harold Van Tuyl

> I'm on Remicade because Medicare is my primary insurance and they won't pay anything for the others. From what I have heard all three are about equally effective on average but different ones work better for different people. I suggest going with what you can afford. God bless.

Medicare will pay for Remicade? They have a special program for the others (like Enbrel), but as you can see from my story, it isn't much help.

Nina

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In a message dated 7/21/2005 11:53:23 A.M. Pacific Standard Time, meshouse@... writes:

Does Enbrel really work for many people if I have to go that route?

I use enbrel and I like it.

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Its because Remicade is an infusion and is done in the doctor's office so falls under the "medical" benefit opposed to an "RX" benefit. Enbrel and Humira are self-injectables which generally fall under a "RX" benefit. Therefore, that is why Medicare probably pays on Remicade and not the other 2.

I suggest checking it out - that is what I had to do. I started on Remicade as I had HMO and it was covered at 100%, but then they changed after renewal, to an HMO 80/20, and I could no longer afford it. I don't know how anyone can even afford 20% for the rest of your life. Its one thing if it is just for a year, but how do they think people can afford this medicine, which is the only thing that prevents joint damage, which is basically stopping progression on this crippling disease. It definitely pays to ask your doc lots of questions about alternatives and in turn also check your medical benefits, Medicare, or whatever you are on, to see if perhaps one of these drugs is covered. My doc said I could try any of the 3. So I called and asked about how much each would be for me. At my last job, Humira would have cost me 400-600 a month plus 20% of lab tests every 2 months, not in my budget! I now pay only $30

for a 3-month supply. Mail order generally is a cheaper way to go as well if you have that thru your insurance plan, ask, you may not know you even have it!

I know and appreciate what I have right now, as I know too well, how insurance companies change your benefits every year. So I quit the health insurance co. I worked for - funny how employees had worse bennies than most other groups in the state. I now work for a great company! So I say, sometimes you just have to look around, and ask lots of questions. I also got assistance thru PSI, Inc. for a short time when i was on Cobra and working temp till I got hired full-time. They paid my premiums for Cobra and I paid 10% of the remicade.

It has saved me from selling my home and has saved me from going on disability as without the meds I'm on I know I wouldn't have been able to hold a job for long, I was in tears and severe pain every day, lost work time, and they tried to get me to admit I couldn't do my job, but I didn't as I could do it all just not the amount they were dumping on me at the time as I was seeing 3 specialists and having to go in for my infusion every 8 weeks. So I quit before they ended up getting rid of me! I was told too often insurance companies don't want sick people - I just couldn't work for a place any longer that had that attitude - I thought that was what insurance was for - for chronic conditions when you need it!

Good luck everyone! I hope and pray you can get better medicine!

Nina <ncampbell@...> wrote:

----- Original Message -----

From: Harold Van Tuyl

> I'm on Remicade because Medicare is my primary insurance and they won't pay anything for the others. From what I have heard all three are about equally effective on average but different ones work better for different people. I suggest going with what you can afford. God bless.

Medicare will pay for Remicade? They have a special program for the others (like Enbrel), but as you can see from my story, it isn't much help.

Nina

Start your day with - make it your home page

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Hey all,

Medicare pays for Remicade because it can be dispensed in a doctor's

office.

Take care,

Steph in VA

<DIV><SPAN style= " FONT-SIZE: 11pt; COLOR: black; FONT-FAMILY: 'Times New

Roman'; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: 'Times New

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mso-bidi-font-size: 9.0pt " ><SPAN style= " FONT-SIZE: 11pt; COLOR: black;

FONT-FAMILY: 'Times New Roman'; mso-bidi-font-size: 10.0pt " ><PRE><SPAN

style= " FONT-SIZE: 11pt; COLOR: black; FONT-FAMILY: 'Times New Roman';

mso-bidi-font-size: 10.0pt " ><FONT color=#6600cc><FONT size=4><SPAN

style= " FONT-SIZE: 11pt; COLOR: black; FONT-FAMILY: 'Times New Roman';

mso-bidi-font-size: 10.0pt " ><FONT color=#9900cc><FONT

face=Garamond><PRE><FONT face= " Lucida Handwriting, Cursive "

color=#3300ff>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~\

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~</FONT></PRE><PRE>\

<PRE><PRE><F

<br><br><br> & gt;From: & quot;Nina & quot;

& lt;ncampbell@... & gt;<br> & gt;Reply-To:

Rheumatoid Arthritis <br> & gt;To:

& lt;Rheumatoid Arthritis & gt;<br> & gt;Subject: Re:

Newly Diagnosed<br> & gt;Date: Thu, 21 Jul 2005

16:00:51 -0500<br> & gt;<br> & gt;----- Original Message -----<br> & gt;From:

Harold Van Tuyl<br> & gt;<br> & gt;<br> & gt; & gt; I'm on Remicade because

Medicare is my primary insurance and they won't pay anything for the others.

From what I have heard all three are about equally effective on average

but different ones work better for different people. I suggest going with

what you can afford. God bless.<br> & gt;<br> & gt;Medicare will pay for

Remicade? They have a special program for the others (like Enbrel), but as

you can see from my story, it isn't much

help.<br> & gt;<br> & gt;Nina<br> & gt;<br>

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-Nina where in Texas do you live I live in Oklahoma City if you are

almost in OK we don't live that far apart I have RA pretty bad agong

with a lot of other stuff you can e-mail me or talk to me on line

Sherrie in OK

-- In Rheumatoid Arthritis , " Nina "

<ncampbell@t...> wrote:

> ----- Original Message -----

> From: Maggie

>

> > I saw the posters and pamphlets all over my RA's office in

Orlando....so I'd assume that you could just call your doctor and

ask about the study. That was just one link I found w/some info on

it. Everything that I will be doing for the 3 months will be done by

my doctor and the study nurse in Orlando.

>

> I just spoke with my doc's office and she said you have to go to

Sugarland for the visits. So that's out of the question for me. I

do live in TX, but it's way too far to Houston from where I am

(almost in Oklahoma). So I made an appt. for the 27th to talk to

him about what else we can possibly do. I'm all for trying the

methotrexate. I'd rather have one good year left than 10 like the

last one. The reason I have pneumonia right now is because my

husband came home with a cold and with me taking so much prednisone,

I have no immune system left.

>

> Nina

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-Nina where in Texas do you live I live in Oklahoma City if you are

almost in OK we don't live that far apart I have RA pretty bad agong

with a lot of other stuff you can e-mail me or talk to me on line

Sherrie in OK

-- In Rheumatoid Arthritis , " Nina "

<ncampbell@t...> wrote:

> ----- Original Message -----

> From: Maggie

>

> > I saw the posters and pamphlets all over my RA's office in

Orlando....so I'd assume that you could just call your doctor and

ask about the study. That was just one link I found w/some info on

it. Everything that I will be doing for the 3 months will be done by

my doctor and the study nurse in Orlando.

>

> I just spoke with my doc's office and she said you have to go to

Sugarland for the visits. So that's out of the question for me. I

do live in TX, but it's way too far to Houston from where I am

(almost in Oklahoma). So I made an appt. for the 27th to talk to

him about what else we can possibly do. I'm all for trying the

methotrexate. I'd rather have one good year left than 10 like the

last one. The reason I have pneumonia right now is because my

husband came home with a cold and with me taking so much prednisone,

I have no immune system left.

>

> Nina

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I get my remicade in the hospital and medicare pays for it and

medicaid pays for the rest if it weren't for the two of them I

couldn't afford any of it good luck on you meds

Sherrie

> Hey all,

> Medicare pays for Remicade because it can be dispensed in a

doctor's

> office.

>

> Take care,

> Steph in VA

>

> <DIV><SPAN style= " FONT-SIZE: 11pt; COLOR: black; FONT-

FAMILY: 'Times New

> Roman'; mso-bidi-font-size: 12.0pt; mso-fareast-font-

family: 'Times New

> Roman'; mso-ansi-language: EN-US; mso-fareast-language: EN-US;

> mso-bidi-language: AR-SA " ><SPAN style= " FONT-SIZE: 11pt; COLOR:

black;

> mso-bidi-font-size: 9.0pt " ><SPAN style= " FONT-SIZE: 11pt; COLOR:

black;

> FONT-FAMILY: 'Times New Roman'; mso-bidi-font-size:

10.0pt " ><PRE><SPAN

> style= " FONT-SIZE: 11pt; COLOR: black; FONT-FAMILY: 'Times New

Roman';

> mso-bidi-font-size: 10.0pt " ><FONT color=#6600cc><FONT size=4><SPAN

> style= " FONT-SIZE: 11pt; COLOR: black; FONT-FAMILY: 'Times New

Roman';

> mso-bidi-font-size: 10.0pt " ><FONT color=#9900cc><FONT

> face=Garamond><PRE><FONT face= " Lucida Handwriting, Cursive "

>

color=#3300ff>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

~~~~</FONT></PRE><PRE><PRE><PRE><F

>

> <br><br><br> & gt;From: & quot;Nina & quot;

> ncampbell@t...<br> & gt;Reply-To:

> Rheumatoid Arthritis <br> & gt;To:

> Rheumatoid Arthritis <br> & gt;Subject: Re:

> Newly Diagnosed<br> & gt;Date: Thu, 21 Jul

2005

> 16:00:51 -0500<br> & gt;<br> & gt;----- Original Message -----

<br> & gt;From:

> Harold Van Tuyl<br> & gt;<br> & gt;<br> & gt; & gt; I'm on Remicade

because

> Medicare is my primary insurance and they won't pay anything for

the others.

> From what I have heard all three are about equally effective on

average

> but different ones work better for different people. I suggest

going with

> what you can afford. God bless.<br> & gt;<br> & gt;Medicare will pay

for

> Remicade? They have a special program for the others (like

Enbrel), but as

> you can see from my story, it isn't much

> help.<br> & gt;<br> & gt;Nina<br> & gt;<br>

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----- Original Message -----

From: Sherrie

> I get my remicade in the hospital and medicare pays for it and medicaid pays for the rest if it weren't for the two of them I couldn't afford any of it good luck on you meds

I just got an email from the lady regarding the Humira study and you do have to travel to Sugarland (Houston), so that's out of the question for me.

Nina

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same here! been off and on for 3 years...off for surgeries & then back on = no problems! gentle hugs!getcoffee@... wrote:

In a message dated 7/21/2005 11:53:23 A.M. Pacific Standard Time, meshouse@... writes:

Does Enbrel really work for many people if I have to go that route?

I use enbrel and I like it.

Start your day with - make it your home page

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----- Original Message -----

From: Sherrie

> Nina where in Texas do you live I live in Oklahoma City if you are almost in OK we don't live that far apart I have RA pretty bad agong with a lot of other stuff you can e-mail me or talk to me on line

I am in Whitesboro, which is about 175 miles South of OK City.

Nina

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That's not good....

I guess some states are doing it different or something.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

Nina wrote:

I just got an email from the lady regarding

the Humira study and you do have to travel to Sugarland (Houston), so

that's out of the question for me.

Nina

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----- Original Message -----

From: Maggie

> That's not good....I guess some states are doing it different or something.

It looks to me like the whole study originates in Sugarland.

Nina

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Hi,

I was diagnosed about a month ago and would love to hear how any of you guys have dealt with the emotional side of celiac. I am thrilled to be feeling better, but am still adjusting to this huge lifestyle change, especially when I think of how this change is for forever. Or, how frustrated I get when I trip up and accidentally eat something that makes me sick again...

Thanks -- it's good to know you guys are out there.

S.

Start your day with - make it your home page

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