Jump to content
RemedySpot.com

new here

Rate this topic


Guest guest

Recommended Posts

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

Link to comment
Share on other sites

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?

Link to comment
Share on other sites

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?<<

Link to comment
Share on other sites

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

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

Link to comment
Share on other sites

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

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

Link to comment
Share on other sites

  • 1 month later...
Guest guest

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

Link to comment
Share on other sites

Guest guest

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

Link to comment
Share on other sites

Guest guest

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

Link to comment
Share on other sites

Guest guest

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$$).

>

Link to comment
Share on other sites

Guest guest

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$$).

>

Link to comment
Share on other sites

Guest guest

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$$).

>

Link to comment
Share on other sites

Guest guest

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

Link to comment
Share on other sites

Guest guest

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

Link to comment
Share on other sites

Guest guest

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

Link to comment
Share on other sites

  • 3 months later...
Guest guest

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

Link to comment
Share on other sites

Guest guest

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

Link to comment
Share on other sites

Guest guest

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!)

Link to comment
Share on other sites

Guest guest

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

Link to comment
Share on other sites

Guest guest

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.

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!)

Link to comment
Share on other sites

Guest guest

Marilyn,

Good on you for getting out there and doing such research for your own

information. What is it with doctors who think their patients should blindly go

where they're told to????? Makes no sense to me! We are all individuals, even

though you're all dealing with the same diagnosis, and you will all respond

differently to different therapys/ treatments. Are doctors so dumb they haven't

worked that out yet? People must have thorough information. How else can they

make informed decisions?

Oh, and don't " go away " now will you, you're a valuable member of our team now!

Love

anne

Re: New here

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.

Marilyn (who is going to go away now!)

Link to comment
Share on other sites

Guest guest

anne,

You are absolutely right on with your comments. I don't have Hep C

but I have been diagnosed with hypothyrodism, fibromyalgia,

associated with the Epstein Barr virus and let me tell you......I

have really been all of the playing board with doctors and

treatments....I can honestly say, do your own research!!!! I am doing

better today than I was doing 10 years ago. I am 53 now.

ana

PS Additionally, I work in a doctor's office!!!!!

> Marilyn,

>

> Good on you for getting out there and doing such research for your

own information. What is it with doctors who think their patients

should blindly go where they're told to????? Makes no sense to me!

We are all individuals, even though you're all dealing with the same

diagnosis, and you will all respond differently to different

therapys/ treatments. Are doctors so dumb they haven't worked that

out yet? People must have thorough information. How else can they

make informed decisions?

>

> Oh, and don't " go away " now will you, you're a valuable member of

our team now!

>

> Love

> anne

> Re: New here

>

>

>

> 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.

>

> Marilyn (who is going to go away now!)

>

>

>

Link to comment
Share on other sites

Guest guest

Thank you Marilyn. Each time I get the pitty-pot attitude warmed up, some one

comes along and shows me what strength and adversity are really about. Glad to

know you and indeed, hope to know you better.

Sharon in WA

Re: New here

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

Link to comment
Share on other sites

Guest guest

That's a really unfair and untrue statement. I get really mad when I hear it

also. It just shows the further ignorance of the medical establishment, lumping

every thing into one group.

Sharon

Re: New here

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

Link to comment
Share on other sites

Guest guest

Hi Joe,

Thanks for the welcome. It's really weird to find out that you have Hep C when

you are trying to do such a benign thing, isn't it? In my case, it was a blood

test with an annual physical. The doctor had already taken my blood and started

asking me about the scars on my leg. I told her about the childhood surgeries.

She asked if I had ever had a blood transfusion, and I told her I had two of

them as a child. She asked me if I minded if she had my blood checked for Hep

C. I thought, " whatever floats your boat " and told her to go ahead. She later

told me she was asking all her patients to be tested, because her two best

friends had just been diagnosed with it.

My whole world turned upside down when I got that phone call with the results.

To make it worse, the next day I got a call from the county health department.

Under IL law, Hep C has to be reported, and now I am on the books as carrying an

STD! (Now if you wanna know what can really make my head explode, it's someone

calling Hep C an STD) By law, I had to answer the woman's questions, but she

also got an earful from me.

I am really liking what I am reading on this list, and will probably come out of

lurkdom soon. I'm not seeing the arguments and the junk science that I've seen

on some other lists - I just needed to know that I was in a safe place.

Marilyn

Re: New here

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

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...