new here

January 30, 2005

Hi ,

I can only say you come to the right place. Support is the

underpinning of slaying the dragon. If he realizes that others like

myself suffer from diseases not common to HCV (CAD Coronary Artery

Disease WPW Wolf Parkenson White syndrome SVT Arrhythmia and

Diabetes) I am on Plavix Atenol and Welchol for my heart. He may see

he is not alone in his plight. I have never taken HCV/Cirrhosis easy

and went along with the program but that is me. I am a fighter and

always looking for another way to fight this disease. You are very

lucky in that you live in the NY metropolitan area as some of the

best doctors and hospitals reside there. I am from the Bronx NY

originally and lived on LI in town. I now reside in Florida. So

there may be some common factors that he could relate to and express

his true feelings in the area of combating his diseases.

Wishing you prayers and hope,

Fred

January 30, 2005

Hi Fred,

This is from Nesconset-the new girl...My boyfriend, the one who

owes me a ring after 18 years grew up in St. .If you don't mind

me asking, and if you don't mind answering, how old are you?

January 30, 2005

Hi ,

Why sure I am 58. A old geeser or as my wife calls me a dirty old

man. A SantaClause in sheeps clothing . Oh the ring is in the mail.

Fred

>>Hi Fred,

This is from Nesconset-the new girl...My boyfriend, the one who

owes me a ring after 18 years grew up in St. .If you don't mind

me asking, and if you don't mind answering, how old are you?<<

January 30, 2005

Fred , Awwwwm its so nice to talk to a ny'er.............I will say hi to the

Island for ya..............................marianne

trimenow1234 wrote:

Hi nne,

I used to live right off of Veteran's Highway. Used to drive into

the Bronx every day. On on LIE. Man what a trek that was. Had to

leave at 4 am to get to the Bronx at 8 am. Go 20 MPH all the way in.

I don't miss the traffic. Now in Florida a traffic jam is a cop on

the side of the road. But wait till super bowel gets here next week.

It will feel like NYC again.

I used to love the LI sound beach. Still have relatives in

Massapequa (spelling). Used to go to the point to do Stripper

fishing (Stripped Sea Bass)off the beach. Say hello to town for

me. Have friends in St. .

Fred

It's a pleasure having you join in our conversations. We hope you have found the

support you need with us.

If you are using email for your posts, for easy access to our group, just click

the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/

Happy Posting

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

January 31, 2005

I work for some surgons, admit patients, make there charts and answer the

phones..........I love it

Hi nne,

I'm from Nesconset. What kind of work do you do in town?

It's a pleasure having you join in our conversations. We hope you have found the

support you need with us.

If you are using email for your posts, for easy access to our group, just click

the link-- http://groups.yahoo.com/group/Hepatitis_C_Central/

Happy Posting

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

March 1, 2005

Hi Ramona,

I never thought about that - yes, we call all laugh at Monk and not

get in trouble! I wish they'd put it on the " basic " cable as

we're gonna be switching to that soon (save$$).

I have a son, 16, with OCD. His problems began at the beginning of

6th grade, lots of compulsions began. For him, middle school was

tough due to his OCD. Now it's pretty much under control and high

school has been great! You ever notice that little " head

shake/movement " Monk does, maybe like he's trying to pull himself

together? I've told , he does that too. It's interesting to

see the actor do it. also has an Aspergers (autism)

diagnosis, and I'd sort of thought it was the Aspergers part of him

that the " head thing " went with.

Regarding medication and weight gain, is on Celexa and hasn't

gained anything. He's tall & lanky though, very skinny anyway. I do

know of some adults who have gained a few pounds on it, but I " think "

that it is one of the SSRIs that causes least weight gain.

Also, if you search through the archived messages here, you will see

many with the subject " inositol. " It's a " vitamin supplement " to try

to put it simply. first went on inositol powder back in 6th

grade and he did very well on it, used it all through middle school.

You might want to look at our previous posts on it and also at this

link: http://www.homestead.com/westsuffolkpsych/Inositol_and_OCD.html

It's something to try if she's not wanting yet to go back on

medication, worry about weight gain, etc. I think of it like any

medication for OCD though, what works for one person doesn't work for

all, etc. We switched to Celexa at the beginning of 9th grade for

various reasons, one being said he would try a prescription

medication as I had always wondered if he would get more relief from

prescription than inositol. He did great, as I said, on inositol but

OCD was " still there " even though at times " I " didn't see it.

's wanting a job too. I don't think his OCD will interfere so

much with that (unless it begins to wax a bit due to stress, first

job, learning, making friends at work, etc.) but I think

the " Aspergers " difficulties will make it hard. He's smart but I

think needs help in what I call " daily living " and " common sense "

things sometimes. Making decisions is hard for him too at times.

Well, again, welcome! This group has been my best support since we

began dealing with OCD!

single mom, 3 sons

, 16, with OCD, dysgraphia and Aspergers

>

> Hi! I just want to introduce myself. I am married & the mother of a

7

> year old son & a 16 year old daughter. My daughter has OCD. She was

> diagnosed when she was 9. Her symptoms started when she was 5. It

> took all those years to get a name for what was torturing her.

School

> was hard for her, although there was a time of " remission " during

the

> middle school years. Freshman year was the worst. Kids can be

March 1, 2005

Hi Ramona,

I never thought about that - yes, we call all laugh at Monk and not

get in trouble! I wish they'd put it on the " basic " cable as

we're gonna be switching to that soon (save$$).

I have a son, 16, with OCD. His problems began at the beginning of

6th grade, lots of compulsions began. For him, middle school was

tough due to his OCD. Now it's pretty much under control and high

school has been great! You ever notice that little " head

shake/movement " Monk does, maybe like he's trying to pull himself

together? I've told , he does that too. It's interesting to

see the actor do it. also has an Aspergers (autism)

diagnosis, and I'd sort of thought it was the Aspergers part of him

that the " head thing " went with.

Regarding medication and weight gain, is on Celexa and hasn't

gained anything. He's tall & lanky though, very skinny anyway. I do

know of some adults who have gained a few pounds on it, but I " think "

that it is one of the SSRIs that causes least weight gain.

Also, if you search through the archived messages here, you will see

many with the subject " inositol. " It's a " vitamin supplement " to try

to put it simply. first went on inositol powder back in 6th

grade and he did very well on it, used it all through middle school.

You might want to look at our previous posts on it and also at this

link: http://www.homestead.com/westsuffolkpsych/Inositol_and_OCD.html

It's something to try if she's not wanting yet to go back on

medication, worry about weight gain, etc. I think of it like any

medication for OCD though, what works for one person doesn't work for

all, etc. We switched to Celexa at the beginning of 9th grade for

various reasons, one being said he would try a prescription

medication as I had always wondered if he would get more relief from

prescription than inositol. He did great, as I said, on inositol but

OCD was " still there " even though at times " I " didn't see it.

's wanting a job too. I don't think his OCD will interfere so

much with that (unless it begins to wax a bit due to stress, first

job, learning, making friends at work, etc.) but I think

the " Aspergers " difficulties will make it hard. He's smart but I

think needs help in what I call " daily living " and " common sense "

things sometimes. Making decisions is hard for him too at times.

Well, again, welcome! This group has been my best support since we

began dealing with OCD!

single mom, 3 sons

, 16, with OCD, dysgraphia and Aspergers

>

> Hi! I just want to introduce myself. I am married & the mother of a

7

> year old son & a 16 year old daughter. My daughter has OCD. She was

> diagnosed when she was 9. Her symptoms started when she was 5. It

> took all those years to get a name for what was torturing her.

School

> was hard for her, although there was a time of " remission " during

the

> middle school years. Freshman year was the worst. Kids can be

March 1, 2005

Hi Ramona,

I never thought about that - yes, we call all laugh at Monk and not

get in trouble! I wish they'd put it on the " basic " cable as

we're gonna be switching to that soon (save$$).

I have a son, 16, with OCD. His problems began at the beginning of

6th grade, lots of compulsions began. For him, middle school was

tough due to his OCD. Now it's pretty much under control and high

school has been great! You ever notice that little " head

shake/movement " Monk does, maybe like he's trying to pull himself

together? I've told , he does that too. It's interesting to

see the actor do it. also has an Aspergers (autism)

diagnosis, and I'd sort of thought it was the Aspergers part of him

that the " head thing " went with.

Regarding medication and weight gain, is on Celexa and hasn't

gained anything. He's tall & lanky though, very skinny anyway. I do

know of some adults who have gained a few pounds on it, but I " think "

that it is one of the SSRIs that causes least weight gain.

Also, if you search through the archived messages here, you will see

many with the subject " inositol. " It's a " vitamin supplement " to try

to put it simply. first went on inositol powder back in 6th

grade and he did very well on it, used it all through middle school.

You might want to look at our previous posts on it and also at this

link: http://www.homestead.com/westsuffolkpsych/Inositol_and_OCD.html

It's something to try if she's not wanting yet to go back on

medication, worry about weight gain, etc. I think of it like any

medication for OCD though, what works for one person doesn't work for

all, etc. We switched to Celexa at the beginning of 9th grade for

various reasons, one being said he would try a prescription

medication as I had always wondered if he would get more relief from

prescription than inositol. He did great, as I said, on inositol but

OCD was " still there " even though at times " I " didn't see it.

's wanting a job too. I don't think his OCD will interfere so

much with that (unless it begins to wax a bit due to stress, first

job, learning, making friends at work, etc.) but I think

the " Aspergers " difficulties will make it hard. He's smart but I

think needs help in what I call " daily living " and " common sense "

things sometimes. Making decisions is hard for him too at times.

Well, again, welcome! This group has been my best support since we

began dealing with OCD!

single mom, 3 sons

, 16, with OCD, dysgraphia and Aspergers

>

> Hi! I just want to introduce myself. I am married & the mother of a

7

> year old son & a 16 year old daughter. My daughter has OCD. She was

> diagnosed when she was 9. Her symptoms started when she was 5. It

> took all those years to get a name for what was torturing her.

School

> was hard for her, although there was a time of " remission " during

the

> middle school years. Freshman year was the worst. Kids can be

March 1, 2005

OK, I really need to proofread! That should be " we can all laugh... "

not " we call all laugh " ! I'm afraid to read any more of what I

wrote, just forgive errors and hope you all figure out what I meant!

>

> Hi Ramona,

> I never thought about that - yes, we call all laugh at Monk and not

> get in trouble! I wish they'd put it on the " basic " cable as

> we're gonna be switching to that soon (save$$).

>

March 1, 2005

OK, I really need to proofread! That should be " we can all laugh... "

not " we call all laugh " ! I'm afraid to read any more of what I

wrote, just forgive errors and hope you all figure out what I meant!

>

> Hi Ramona,

> I never thought about that - yes, we call all laugh at Monk and not

> get in trouble! I wish they'd put it on the " basic " cable as

> we're gonna be switching to that soon (save$$).

>

March 1, 2005

OK, I really need to proofread! That should be " we can all laugh... "

not " we call all laugh " ! I'm afraid to read any more of what I

wrote, just forgive errors and hope you all figure out what I meant!

>

> Hi Ramona,

> I never thought about that - yes, we call all laugh at Monk and not

> get in trouble! I wish they'd put it on the " basic " cable as

> we're gonna be switching to that soon (save$$).

>

March 1, 2005

In a message dated 3/1/2005 6:14:57 PM Pacific Standard Time,

FlyWithMyBirds@... writes:

> My husband doesn't deal with it well, and has his own depression issues.

>

Ditto! Depression that comes out in fits of rage at times.

I too > homeschool. It helps to hear that " I am not the only one! " I am

> also new to

> this group...

>

We also homeschool. . have for 6 years. Sort of new here too. . .a month

or so.

BJ

March 1, 2005

In a message dated 3/1/2005 6:14:57 PM Pacific Standard Time,

FlyWithMyBirds@... writes:

> My husband doesn't deal with it well, and has his own depression issues.

>

Ditto! Depression that comes out in fits of rage at times.

I too > homeschool. It helps to hear that " I am not the only one! " I am

> also new to

> this group...

>

We also homeschool. . have for 6 years. Sort of new here too. . .a month

or so.

BJ

March 2, 2005

Cheri,

You are right it does help to know " we are not the only one " .It

sounds like we have a lot in common. I think this group is going to

give us a lot of support. I know I need it. I have already gotten a

lot of good advice.

Ramona

March 2, 2005

Thanks for the suggestion about inositol. I am certainly going to

check into it.

Ramona

June 7, 2005

Hi Marilyn,

My situation seems similar to yours with slight differences. I was

diagnosed this last winter when attempting to donate blood. I probably got

this from

a transfusion either in 1973 or 1984. I thought I had a count of 200,000

until I found out that you generally have to multiple that number by 8. My

biopsy showed minimal scarring and inflammation (a high of 1). I am geno 1a

and

was told that because of this and the fact that my viral load was moderate

(rather than low) I probably would not be a good candidate for treatment. I

was told I should wait because I had time to do so. Yes, this list is very

supportive and is a great source of info. Happy lurking.

Joe

In a message dated 6/8/2005 12:24:26 A.M. Central Standard Time,

MarilynWilkinson@... writes:

Hi, I'm Marilyn, I've been lurking for a week or so. I left my last

list because they pretty much have pooped out. There's a woman

who's been spamming the list with a bunch of junk science studies,

the moderator loves them and the rest of us are just too bored to

post. A shame because it used to be a good list.

I was diagnosed three years ago - as far as we can tell I got Hep C

from a blood transfusion when I was 10 or 12 years old during

surgery. Maybe as far back as 1957. I am genotype 1B, probably a

non-responder to treatment, had a viral count at my last biopsy of

350,000, and the biopsy three years ago showed no liver damage. I

am not on treament, and may not ever be. Yet I hope I will be

welcome here. I know life can turn on a dime and I can be in dire

straits tomorrow.

I hope you will allow me to lurk with you. I know at the beginning

of my last list that I was given such good information about simple

lifestyle changes that made me feel 10 year younger, at least. I

hope to learn a lot from all of you, too.

You seem like such a loving group, and I know that no one knows what

this is like for us, except us. I would go through treatment

tomorrow in a heartbeat, if I knew I had a chance of being a non-

responder. The way it is now, I am more at risk from sides from the

tretment than I am from the disease. Pretty scary place to be, but

I'm sure not as scary as going through the TX. Bless all of you!

Marilyn

June 8, 2005

Marilyn,

Welcome. I don't think you'll get bored with this list! There are too many

great people here!

Just make sure you've brought your sense of humour. We're a whacky lot! Hehehe

Love

anne

New here

Hi, I'm Marilyn, I've been lurking for a week or so. I left my last

list because they pretty much have pooped out. There's a woman

who's been spamming the list with a bunch of junk science studies,

the moderator loves them and the rest of us are just too bored to

post. A shame because it used to be a good list.

I was diagnosed three years ago - as far as we can tell I got Hep C

from a blood transfusion when I was 10 or 12 years old during

surgery. Maybe as far back as 1957. I am genotype 1B, probably a

non-responder to treatment, had a viral count at my last biopsy of

350,000, and the biopsy three years ago showed no liver damage. I

am not on treament, and may not ever be. Yet I hope I will be

welcome here. I know life can turn on a dime and I can be in dire

straits tomorrow.

I hope you will allow me to lurk with you. I know at the beginning

of my last list that I was given such good information about simple

lifestyle changes that made me feel 10 year younger, at least. I

hope to learn a lot from all of you, too.

You seem like such a loving group, and I know that no one knows what

this is like for us, except us. I would go through treatment

tomorrow in a heartbeat, if I knew I had a chance of being a non-

responder. The way it is now, I am more at risk from sides from the

tretment than I am from the disease. Pretty scary place to be, but

I'm sure not as scary as going through the TX. Bless all of you!

Marilyn

June 8, 2005

Thanks for the welcome, June, Joe, and anne! Joe, I think you might have

joined the last list I was on, your e-mail is very familiar to me. June, I am

probably due for another biopsy soon, it might just be worth it if there was a

hot fudge sundae on the other end!

When I was diagnosed on the Ides of March in 2002, the Hep C landscape was a lot

different than it is now. Roche was the only game in town, and my doctor put me

on the waiting list for treatment. Waiting list, what was up with that, except

that Roche had a lock on who got the TX, and could set the prices. Thank God I

had the Hep C Web Warriors and the Hepatitis C Support Group at the time,

unfortunately, both have gone pretty much by the wayside since then.

Those people educated me about genotypes, about viral loads, about symptoms and

how to alleviate them. I learned that Pegasys was going to be approved at any

minute.

After I had all the blood tests done, had the ultrasound of my liver done and

had the biopsy, and had the vaccinations done for Hep A and Hep B, I went to see

my hepatologist. He was *really* pushing the TX.

I had already learned so much in the previous three months from my fellow

listers who were living with this dragon. Ohmygosh, what a difference in my

life just from learning to drink 1 oz of water for every 2# of my body weight

every day! Move around, even if I took a two hour nap afterward!

So here I am, 1B, no liver damage and a low viral count in my blood, and this

guy is telling me he wants me on TX for 18 months. Through my first lists, I

met people who went blind on TX, who were totally debilitated physically, and

all sorts of other maladies like Fibromyalgia. To be fair, there were many more

who had a good result. Just not a whole lot with genotypes 1 who were

responders. I told the hepatologist that I had been educated that I had time to

wait - he went postal on me.

I *swear* I saw dollar bills with wings on them flying around his head! I

*know* he was getting a kickback from Roche. I had the " Be in Charge " nurse

from Roche saying I should order the TX drugs from her, I had my insurance

company saying I should order the drugs from them, and I had my hepatologist

saying I should order the drugs from him. Something was going on here!

The doctor told me I shouldn't put any faith in people I met on the internet.

Duhhhhh.......aren't we the people living with this disease? He told me the

studies I found were old and outdated. I asked him about Pegasys, and he said

it was such a lame rumor and wouldn't be on the market for at least 4 years -

funny, it was out there 2 weeks later! Sheesh, when I got home from that

doctor's visit, I went on the internet and found a study (since watered down)

put out by the NIH that very day - which said that genotypes 1 aren't good

responders to the TX, and woo, hoo, for women, the younger girls are when they

contract it, the less likely they will ever need treatment! Well, I was 10 or

12 when I got the transfusions both times, and I was 54 when I got the

diagnosis. I've been lucky so far, but may just be on borrowed time.

I am so sorry that I am babbling, I know I am not in such dire straights as a

lot of you are. It's just that I am so happy to find such a caring, loving group

of people like the groups who fell apart and that I have really been missing. I

just want you all to know that I am praying for all of you, and wish you all the

best. I know if we stick together, we can beat this dragon!

Marilyn (who is going to go away now!)

June 8, 2005

Oh, BTW, anne, I *love* that there is a sense of humor on this list! We are

fun people first, just living our lives with something that doesn't define us!

And we also have many interests. For me, I am a dog nut. I have two Flat

Coated Retrievers. My dogs are involved in agility, obedience and pet assisted

therapy, the last is the most important to me. The first two I do because they

like it, but the therapy is what satisfies me the most. There is no greater

gift to me than to see my dogs make miracles with stroke and brain injury

victims - I just stand back and watch God and my dogs perform miracles, and I

get the blessings!

I have two great kids who are 36 and almost 35, they left home lots of years

ago, and I have to have something to take care of, LOL!

Marilyn (Ummmm, who may not be a lurker, you guys are great!)

Re: New here

Marilyn,

Welcome. I don't think you'll get bored with this list! There are too many

great people here!

Just make sure you've brought your sense of humour. We're a whacky lot!

Hehehe

Love

anne

June 9, 2005

Hi Marilyn.

I am Sharon, 62 and with genotype 2a for 36 years. Had a hysterectomy with lots

of bleeding and had transfusion just before the actual surgery. GOT HEPC. I

have had treatment once and relapsed. I started treatment again about 6 weeks

ago and just could not hang in there. I got so terribly depressed and red blood

counts started to fall, my doc took me off and I was relieved. I don't have bad

liver damage and my liver enzymes are normal, so I will just wait for the silver

bullet that is supposed to be in clinical trials now. LOL

You sound like you have a sense of humor and that is a MAGIC bullet for this

disease.

Sharon

Re: New here

Thanks for the welcome, June, Joe, and anne! Joe, I think you might have

joined the last list I was on, your e-mail is very familiar to me. June, I am

probably due for another biopsy soon, it might just be worth it if there was a

hot fudge sundae on the other end!

When I was diagnosed on the Ides of March in 2002, the Hep C landscape was a

lot different than it is now. Roche was the only game in town, and my doctor

put me on the waiting list for treatment. Waiting list, what was up with that,

except that Roche had a lock on who got the TX, and could set the prices. Thank

God I had the Hep C Web Warriors and the Hepatitis C Support Group at the time,

unfortunately, both have gone pretty much by the wayside since then.

Those people educated me about genotypes, about viral loads, about symptoms

and how to alleviate them. I learned that Pegasys was going to be approved at

any minute.