New here

[Guest guest]

I was diagnosed with hypo when I was 18 and it

was too late to let me grow up, i am very short

because I wasn't diagnosed before 18, so you were

lucky.<br>One of the most important thing in my life is never

forget to take my pill in the right time. <br>Last year

I had to leave the levotiroxine for a month and my

life was a caos, I will never leave it again, no

matter what a doctor would say.!!!!!!<br>I started to

feel better again!<br>Melody

[Guest guest]

i am also short but I live with it because I do

not have the weight problem most people do with being

hypothyroid And I thank the lord for it everyday but still

that does not mean it won't eventally happen to me.

I've been having problems with high cholesterol and

with my legs the leg thing is very recent I am getting

knots on them and my legs hurt awful is any one else

having this problem??

[Guest guest]

Hi and good luck. Expect a month before you feel

any changes. Treating the thyroid does not always

guarantee weight loss, but it helps. It was impossible for

me to lose before, now I can but I must stick to a

strict plan to keep my weight down. It remains something

I am aware of daily....I put weight on so

easily...just taking synthroid alone does not keep it off.

[Guest guest]

What's your weight plan? I'm trying to lose 20 pounds, it just doesn't seem to

work for me.

[Guest guest]

Atkins. If you look at my profile there is

another link to the LowCarb Lounge (a club) that is

good. Plus <a href=http://www.atkinsfriends.com

target=new>http://www.atkinsfriends.com</a> is a good site.

Finally, should you decide to follow the diet I highly

recommend getting the book.

[Guest guest]

Hi, .

I completely sympathize with your situation. My son is 7 (almost 8) and has hearing loss in his left ear, too! He's had recurring cholesteatoma since he was 3 years old. As to your question about pediatrician's, I don't think they are trained on this. What a shame. By the time my son's first cholesteatoma was discovered, it had destroyed almost the entire middle ear and had wrapped itself around the facial nerve. It was a 6 1/2 hour operation and nearly tore us apart. The worse part is that my husband kept thinking his infections were something more, mostly because of the smell coming from his ear and his tears. His pediatrician only cleaned his ear out and prescribed drops. The smell went away for a while, so we did nothing. When the last infection didn't clear up, he sent us to an ENT, who finally diagnosed it. The guilt we both felt at not pushing the pediatrician to do more was tremendous. If we had trusted our gut instincts, maybe the cholesteatoma wouldn't have been so extensive, but you never know.

Our son was finally able to swim this summer and without an ear plug. But unfortunately, another infection developed and he had to have more surgery. And as always, the cholesteatoma had recurred. What surprises me most is that he had had cholesteatoma removed back in February of this year, when he went in to have his perforated ear drum repaired. I can't believe it recurred that quickly. As for now, he has to keep his ear completely dry.

Does your daughter like to take showers? My son has to take baths now and I use cotton with vaseline to seal the ear closed. He loved taking showers this summer, but is doing okay with the baths. He's a tough kid, as most kids are! He handles everything remarkably well and we feel very lucky. I'm wondering when he's going to get sick of this whole thing. He's still young enough, and I fear that if it continues, especially when he's a teenager, it may be harder to deal with. But with kids, you just never know. He could surprise us, once again!

About washing the hair, my son will either tilt his head back (pretending to be a howling coyote) or tilt his head sideways. Either way, it works fairly well.

Well, , our prayers go out to you and your daughter. Keep us posted and let us know how her next appointment goes.

New here

Hi everyone I'm so glad to have found this group! We were starting to feel very alone in this. Our daughter Alyssa is 8 1/2 and just had her 3rd surgery in 2 years on her left ear. This last time (on 8/16) they took her ear canal wall down leaving a gaping hole when you look in her ear. She saw the doc last week and her next appt isnt until the beginning of Oct. We'll be starting drops again today. The scar behind her ear has been reopened three times now. She has virtually no hearing in her left ear. Her right ear hears perfectly and has no cholesteatoma, but when she was younger it ruptured a number of times, so that worries me as well. This all started in the spring of 1999 with horrendous infections in both ears. Three months and who knows how many rounds of antibiotics later, and with her ears draining down the side of her face, I demanded to see an ENT. Thats when the cholesteatoma was discovered. Is this not something a pediatrician is trained to look for??? Is it that rare and difficult to see? She had many many ear infections as a baby and young child, and had her tonsils/adnoids out and tubes put in when she was four, and it was never mentioned to me and I never even knew something like this even existed. (Can you tell I have hindsight issues? LOL) Anyway, her first surgery was in Nov of 1999. It had destroyed all of her bones of hearing except the footplate of the stapes. She went back in December (2000) for a second look, and it was back. Then a routine follow up visit in July, it was back again, so she just had surgery in August again. This thing is a nightmare. She just started 4th grade and has been a real trooper through everything. With every surgery she thinks positively that this is one step closer to be able to go underwater in the pool. She loves to swim and I found her crying sitting on the steps of the pool at my parents house this summer when all the other kids (her cousins) were jumping in and she couldn't. It breaks my heart. But as I've told her, in every situation, it can always be worse (which doesnt help when you're a kid). We live an hour outside of LA and she sees a wonderful doc at Childrens Hospital. Anyone have any suggestions to keep water out when washing hair? We've been putting in a silicone ear plug and kind of drape a plastic showercap over her ear then a washcloth over that. I KNOW there must be an easier way I'm curious where everyone else is located. Anybody else in Southern California? I'm looking forward to being part of this group so I will be able to have all the information possible and can support my daughter in every way in her long road ahead. I realize this is a life long thing with many possible complications. It's very difficult to cope with sometimes. Thanks for listening,

[Guest guest]

Terri / - thank you for posting. i just found this group last

weekend while searching for info. my 9 yo nephew is going on surgery

#lostcount this month. his tumor was discovered the same way, by an

ENT instead of a pediatrician when he was very young. long-story

short, after finally having the long-awaited reconstruction, they

went in for what was to be a positive visit - A HEARING TEST! and

found a perforated ear drum (possibly from an uri infection he had

post surgery - nose blowing???). the grafts are all still intact but

they have to go back in thru the back of the ear again. this thing

just keeps on going... plus, he has developed an intermittent stuffy

nose so they went back to the ent who recommened adenoid removal

(done) & is now starting allergy testing (39 shots). it is getting

pretty hard to keep up with all this which is why i have been trying

to find info/help.

they live in florida so he has lived with his earplug all his life

and is able to swim a lot until recently. he does beautifully,

considering.

nancy

> Hi, .

> I completely sympathize with your situation. My son is 7 (almost

8) and has hearing loss in his left ear, too! He's had recurring

cholesteatoma since he was 3 years old. As to your question about

pediatrician's, I don't think they are trained on this. What a

shame. By the time my son's first cholesteatoma was discovered, it

had destroyed almost the entire middle ear and had wrapped itself

around the facial nerve. It was a 6 1/2 hour operation and nearly

tore us apart. The worse part is that my husband kept thinking his

infections were something more, mostly because of the smell coming

from his ear and his tears. His pediatrician only cleaned his ear

out and prescribed drops. The smell went away for a while, so we did

nothing. When the last infection didn't clear up, he sent us to an

ENT, who finally diagnosed it. The guilt we both felt at not pushing

the pediatrician to do more was tremendous. If we had trusted our

gut instincts, maybe the cholesteatoma wouldn't have been so

extensive, but you never know.

> Our son was finally able to swim this summer and without an ear

plug. But unfortunately, another infection developed and he had to

have more surgery. And as always, the cholesteatoma had recurred.

What surprises me most is that he had had cholesteatoma removed back

in February of this year, when he went in to have his perforated ear

drum repaired. I can't believe it recurred that quickly. As for

now, he has to keep his ear completely dry.

> Does your daughter like to take showers? My son has to take baths

now and I use cotton with vaseline to seal the ear closed. He loved

taking showers this summer, but is doing okay with the baths. He's a

tough kid, as most kids are! He handles everything remarkably well

and we feel very lucky. I'm wondering when he's going to get sick of

this whole thing. He's still young enough, and I fear that if it

continues, especially when he's a teenager, it may be harder to deal

with. But with kids, you just never know. He could surprise us,

once again!

> About washing the hair, my son will either tilt his head back

(pretending to be a howling coyote) or tilt his head sideways.

Either way, it works fairly well.

> Well, , our prayers go out to you and your daughter. Keep us

posted and let us know how her next appointment goes.

>

>

> New here

>

>

> Hi everyone

> I'm so glad to have found this group! We were starting to feel

very alone in

> this. Our daughter Alyssa is 8 1/2 and just had her 3rd surgery

in 2 years on

> her left ear. This last time (on 8/16) they took her ear canal

wall down

> leaving a gaping hole when you look in her ear. She saw the doc

last week

> and her next appt isnt until the beginning of Oct. We'll be

starting drops

> again today. The scar behind her ear has been reopened three

times now. She

> has virtually no hearing in her left ear. Her right ear hears

perfectly and

> has no cholesteatoma, but when she was younger it ruptured a

number of times,

> so that worries me as well.

>

> This all started in the spring of 1999 with horrendous infections

in both

> ears. Three months and who knows how many rounds of antibiotics

later, and

> with her ears draining down the side of her face, I demanded to

see an ENT.

> Thats when the cholesteatoma was discovered. Is this not

something a

> pediatrician is trained to look for??? Is it that rare and

difficult to see?

> She had many many ear infections as a baby and young child, and

had her

> tonsils/adnoids out and tubes put in when she was four, and it

was never

> mentioned to me and I never even knew something like this even

existed. (Can

> you tell I have hindsight issues? LOL) Anyway, her first surgery

was in Nov

> of 1999. It had destroyed all of her bones of hearing except the

footplate

> of the stapes. She went back in December (2000) for a second

look, and it

> was back. Then a routine follow up visit in July, it was back

again, so she

> just had surgery in August again.

>

> This thing is a nightmare. She just started 4th grade and has

been a real

> trooper through everything. With every surgery she thinks

positively that

> this is one step closer to be able to go underwater in the pool.

She loves

> to swim and I found her crying sitting on the steps of the pool

at my parents

> house this summer when all the other kids (her cousins) were

jumping in and

> she couldn't. It breaks my heart. But as I've told her, in every

situation,

> it can always be worse (which doesnt help when you're a kid).

>

> We live an hour outside of LA and she sees a wonderful doc at

Childrens

> Hospital. Anyone have any suggestions to keep water out when

washing hair?

> We've been putting in a silicone ear plug and kind of drape a

plastic

> showercap over her ear then a washcloth over that. I KNOW there

must be an

> easier way

>

> I'm curious where everyone else is located. Anybody else in

Southern

> California?

> I'm looking forward to being part of this group so I will be able

to have all

> the information possible and can support my daughter in every way

in her long

> road ahead. I realize this is a life long thing with many

possible

> complications. It's very difficult to cope with sometimes.

> Thanks for listening,

>

>

[Guest guest]

I'm glad you found this site, . It took me years to find a support

group for this.

Your nephew sounds alot like my son. How old was he when it was discovered?

My son was almost 3 when he was first diagnosed. What percentage of hearing

does he have in the affected ear? My son hears about 40-50% right now.

Unless the ENT goes back in and reconstructs a new stapes, then it's all

he'll have. I've been hearing alot about this new hearing implant. I'm not

sure if my son would be a candidate in the future, but I will definitely

look into it. Because of the high risk of infection, I doubt he will ever

get a hearing aid. We'll see. He manages fairly well with his hearing

loss, but I worry how it will affect him in school as he gets older and much

more is demanded of him. He's in the 2nd grade now, and I've already given

his new teacher information on unilateral hearing that we got from the

audiologist, so she knows what to expect this year. Because his ear is

still healing from his surgery, he has to go to school with cotton and a

bandaid. It doesn't seem to bother him and he handles questions with ease.

What a kid!

Well, , please keep me posted on your nephew and know that he will be

in our prayers. Take care.

New here

> >

> >

> > Hi everyone

> > I'm so glad to have found this group! We were starting to feel

> very alone in

> > this. Our daughter Alyssa is 8 1/2 and just had her 3rd surgery

> in 2 years on

> > her left ear. This last time (on 8/16) they took her ear canal

> wall down

> > leaving a gaping hole when you look in her ear. She saw the doc

> last week

> > and her next appt isnt until the beginning of Oct. We'll be

> starting drops

> > again today. The scar behind her ear has been reopened three

> times now. She

> > has virtually no hearing in her left ear. Her right ear hears

> perfectly and

> > has no cholesteatoma, but when she was younger it ruptured a

> number of times,

> > so that worries me as well.

> >

> > This all started in the spring of 1999 with horrendous infections

> in both

> > ears. Three months and who knows how many rounds of antibiotics

> later, and

> > with her ears draining down the side of her face, I demanded to

> see an ENT.

> > Thats when the cholesteatoma was discovered. Is this not

> something a

> > pediatrician is trained to look for??? Is it that rare and

> difficult to see?

> > She had many many ear infections as a baby and young child, and

> had her

> > tonsils/adnoids out and tubes put in when she was four, and it

> was never

> > mentioned to me and I never even knew something like this even

> existed. (Can

> > you tell I have hindsight issues? LOL) Anyway, her first surgery

> was in Nov

> > of 1999. It had destroyed all of her bones of hearing except the

> footplate

> > of the stapes. She went back in December (2000) for a second

> look, and it

> > was back. Then a routine follow up visit in July, it was back

> again, so she

> > just had surgery in August again.

> >

> > This thing is a nightmare. She just started 4th grade and has

> been a real

> > trooper through everything. With every surgery she thinks

> positively that

> > this is one step closer to be able to go underwater in the pool.

> She loves

> > to swim and I found her crying sitting on the steps of the pool

> at my parents

> > house this summer when all the other kids (her cousins) were

> jumping in and

> > she couldn't. It breaks my heart. But as I've told her, in every

> situation,

> > it can always be worse (which doesnt help when you're a kid).

> >

> > We live an hour outside of LA and she sees a wonderful doc at

> Childrens

> > Hospital. Anyone have any suggestions to keep water out when

> washing hair?

> > We've been putting in a silicone ear plug and kind of drape a

> plastic

> > showercap over her ear then a washcloth over that. I KNOW there

> must be an

> > easier way

> >

> > I'm curious where everyone else is located. Anybody else in

> Southern

> > California?

> > I'm looking forward to being part of this group so I will be able

> to have all

> > the information possible and can support my daughter in every way

> in her long

> > road ahead. I realize this is a life long thing with many

> possible

> > complications. It's very difficult to cope with sometimes.

> > Thanks for listening,

> >

> >

[Guest guest]

In a message dated 09/04/2001 2:24:40 PM Pacific Daylight Time, tpotts@... writes:

The worse part is that my husband kept thinking his infections were something more, mostly because of the smell coming from his ear and his tears

Hi Terri

Thanks for writing. You know, now that you mention it, my husband and I notice when Alyssa's c-toma is back her breath is horrendous. I wonder if they go hand in hand. As far as showers go, she was taking showers herself about 6 mos ago, but between me being nervous about water getting in her ear, and the fact that she wasn't rinsing her hair well enough, we went back to baths with me washing her hair (we have a hand held shower adapter). I've read over and over that water almost activates these things to grow, so I'm more than a little nervous about getting any water in there.

Sounds like your little guy has been through it. My heart goes out to all the kids who have to deal with this. And the parents who have to sit through 4,5,6 hour long surgeries. Take care and keep in touch

Yvone

[Guest guest]

Great to have you here. Hopefully your nephew will have a succesful suurgery to repair his ear drum. Has he had recurrent c-toma in the past? I hear they have custom made ear plugs, have you ever heard of them?

[Guest guest]

Hi ,

You mentioned hindsight issues. I know exactly how you feel!!! I've

had ear problems for as long as I can remember. I would get ear

infections, go to the doctor and get medication to clear it up and

then get tubes. Tubes have always been the answer. This past winter

I knew I was starting all over again but I had a new job and didn't

want to take off long enough to go to the doctor, so I put it off for

a couple of months. When I finally went, it was too late for tubes.

After my first surgery in March,I went back to my local ENT to have

the stitches removed. The waiting room was full of parents with

small children. I wanted to stand up and tell every single parent to

look at my ear (you know how bad it looks 7-days postop). I wanted

to tell them to never miss an appointment, never ignore a symptom. I

had major hindsight issues...If only I had known an ear ache could

turn into something like this - I would have taken an hour or two off

work to go to the doctor at the first symptom.

Welcome to the group, its a great place with a great group of

people. Best wishes to you and Alyssa. Tell her we are proud of her

attitude. I agree with you on the shampoo issues - what a pain!

There has got to be a better way. I actually purchased some of those

Saran Quick Covers that you can use to cover small bowls.

Unfortunately, they were way too big. If you ever figure something

out, be sure to let us know!

> Hi everyone

> I'm so glad to have found this group! We were starting to feel

very alone in

> this. Our daughter Alyssa is 8 1/2 and just had her 3rd surgery in

2 years on

> her left ear. This last time (on 8/16) they took her ear canal wall

down

> leaving a gaping hole when you look in her ear. She saw the doc

last week

> and her next appt isnt until the beginning of Oct. We'll be

starting drops

> again today. The scar behind her ear has been reopened three times

now. She

> has virtually no hearing in her left ear. Her right ear hears

perfectly and

> has no cholesteatoma, but when she was younger it ruptured a number

of times,

> so that worries me as well.

>

> This all started in the spring of 1999 with horrendous infections

in both

> ears. Three months and who knows how many rounds of antibiotics

later, and

> with her ears draining down the side of her face, I demanded to see

an ENT.

> Thats when the cholesteatoma was discovered. Is this not something

a

> pediatrician is trained to look for??? Is it that rare and

difficult to see?

> She had many many ear infections as a baby and young child, and

had her

> tonsils/adnoids out and tubes put in when she was four, and it was

never

> mentioned to me and I never even knew something like this even

existed. (Can

> you tell I have hindsight issues? LOL) Anyway, her first surgery

was in Nov

> of 1999. It had destroyed all of her bones of hearing except the

footplate

> of the stapes. She went back in December (2000) for a second look,

and it

> was back. Then a routine follow up visit in July, it was back

again, so she

> just had surgery in August again.

>

> This thing is a nightmare. She just started 4th grade and has been

a real

> trooper through everything. With every surgery she thinks

positively that

> this is one step closer to be able to go underwater in the pool.

She loves

> to swim and I found her crying sitting on the steps of the pool at

my parents

> house this summer when all the other kids (her cousins) were

jumping in and

> she couldn't. It breaks my heart. But as I've told her, in every

situation,

> it can always be worse (which doesnt help when you're a kid).

>

> We live an hour outside of LA and she sees a wonderful doc at

Childrens

> Hospital. Anyone have any suggestions to keep water out when

washing hair?

> We've been putting in a silicone ear plug and kind of drape a

plastic

> showercap over her ear then a washcloth over that. I KNOW there

must be an

> easier way

>

> I'm curious where everyone else is located. Anybody else in

Southern

> California?

> I'm looking forward to being part of this group so I will be able

to have all

> the information possible and can support my daughter in every way

in her long

> road ahead. I realize this is a life long thing with many possible

> complications. It's very difficult to cope with sometimes.

> Thanks for listening,

>

[Guest guest]

Welcome , you will find many people here in different stages and treatment. Many good people so welcome

[Guest guest]

Welcome ,

As the others have said there's alot of good

people here. You've got questions ask away and

I'm sure someone will be able to point you the way.

How are you feeling if I may ask? Headaches or

fatigue? Did you find outwhat genotype you are yet?

Know what your PCR viral load was or your enzymes the

ast & alt? Again, welcome and have a good week.

Love,

=====

I said to a man who stood at the gate of the year;

" Give me a light that I may tread safely into the unknown. " And he replied, " Go

out into the darkness and put your hand in the hand of God. That shall be to

you better than a light and safer than a known way. "

http://alternativehopeforhepc.com

My RBC Website Address is: http://www.royal-health.com/473

__________________________________________________

[Guest guest]

hi diana,

i feel like i have the flu all the time with the

headaches pain in my joints some mornings it is hard

to get anythng done i am a genotype 3a and they think

i have had it for 14 yrs so 14 yrs of drs telling me i

am crazy the dr will not do an ultrasound or a biop

said it wasnt cost effective so three wasnt a need to

do one yes we r looking for another dr i think we may

have found one we will know on the 26 of feb i know

what my viral loads are and i know they are not bad

but they are elevated so it still concerns me i have

gone from 110 lbs down to 91.5 in a matter of 3 weeks

and the dr isnt concerned but i am everything was

elevated not much but enough u would think this dr

wouldn pull his head out of his butt, maybe i will

write a letter to all drs and put it in my local

newspaper you know what i think i will i think it is

ti,e someone reminded them of their oath they took in

med school i think i will maybe if it is ok with

everyone here i will post it here b4 i send it off to

the editor.

carrie

__________________________________________________

[Guest guest]

Hey good luck I can't believe your Dr. said it wasn't cost effective to have biopsey done, it's your life and this is just a common thing that should be done aft. you are told you have it. I'm so sorry you have had all those years of no Dr"s being knowledgeable enough to figure out what was wrong with you. Yes I would expose your Dr. aft. all they should be held responsible, for our health. I wish you the best . Teri

[Guest guest]

Hello Becky,

Welcome to our group.

I was diagnosed last year. I've been on medication since than. I don't feel much

different but it takes months to feel a difference.

Here are some important tips for you:

- Find the book " The Thyroid Solution " . This book has some great and important

information.

- Find out from your doctor the exact levels of your Thyroid - for example TSH,

T4 etc. If those are normal and your doctor has prescribed a thyroid hormone

that isn't good and could even be deadly. It helps to know what your levels are

to keep track of your progress as well.

- Find out the name of your prescription. Not all brands are created the same.

Also there are synthetic vs natural hormones.

- If you are on an anti depressant check with your pharmacist and/or doctor to

see how the 2 medicines will interact.

- Check and see when your doctor wants you to come back for another blood test.

This should be in 4-6 weeks. It may take awhile to get your medication at the

right level.

Louise

> Well, here I am.... My name is Becky and I was diagnosed with hypothyroidism

last night. The dr. prescribed a drug called " Thyroid " , 60 mg. to be taken once

a day. I haven't taken it yet due to a crazy work schedule, so will start it on

Saturday.

>

> I am 33 years old and have suffered from chronic fatigue my whole life. My

mother dragged me from doctor to doctor while I was growing up, having me

checked for everything from leukemia to anemia to hypothyroidism to diabetes.

Everything has always been normal. I've suffered from muscle aches since

childhood, too -- I mean keep me up at night bawling pains. Mom feared I had

leukemia since my cousin died from that. But, I didn't have that either.

>

> In more recent years, I've had a host of digestive problems and for the last 3

years, clinical depression. And, am overweight although I don't have much of an

appetite (never have) and don't often feel hungry. I don't eat much at all and

am 225 lbs. at 5'4.

>

> However, Tuesday, that all changed when I went to my ENT due to allergies.

He's a great doctor and did my sinus surgery 11 mos. ago. He has an allergist

working with him. Anyway, he started asking me some strange questions --

strange, I thought, for allergy problems. I answered them all in the

affirmative. He said it was written all over me that I had thyroid problems. I

said that I'd been tested recently and everything was normal. He said that that

didn't mean much. So, he had an antibody test done and from what I understand,

the antibodies are eating up everything my thyroid gland secrets and nothing is

getting to the cells. So, here I am.

>

> I'm actually happy there's a real explanation for all of my problems that I've

suffered FOREVER. One doctor even told my mother I was faking my symptoms to

get attention when I was a teen! She almost leveled him right there. I almost

leveled him!

>

> Well, hope to get some insight in all of this as it is so new to me.

>

> My mother and one sister have had underactive thyroids, but not like this. My

sister-in-law had a goiter and had to have her thyroid removed last year. The

doctor was 98% sure it was malignant. It wasn't. So, she's been on meds. I

know at first, she was really tired after the surgery. That's about the extent

of my experience of thyroid problems.

>

> Becky

[Guest guest]

Hi Marilyn..........Teri here from new hepsingles welcome to the groups of

hep c. Write me anytime!

[Guest guest]

Welcome Marilyn, This group has help me a lot, mostly the days when i feel alone or just plain sick. I have done the first treatment in 1990 with the shot every day. I did the combo treatments but quit half way though the treatment. I am hoping to try and start again on treatment again the peg in the fall of the year. It is better to find out what is wrong with you than worry about if there is probably wrong. I find we have a lot of animal lovers this is good. Take care and take one step at a time or as I tell people one toes at a time. Remember the key is to drink WATER lots and lots of water, rest when possible, eat healthly lots of green and fresh vegatables. Take care LaDonna

[Guest guest]

Welcome to this list, Marilyn!

You'll find that sometimes the list is quiet and at other times, very active.

Hang in there and feel free to ask any questions you want!

>

> From: " mwbobby " <marilynwilkinson@...>

> Date: 2002/06/14 Fri AM 12:59:54 EDT

> Hepatitis C

> Subject: New Here

>

>

Hi Everybody,

My name is Marilyn and I was diagnosed with Hep C genotype 1 in

April. I have been going through a lot of hurry up and wait tests

since then. I started having symptoms almost 12 years ago, but the

doctors didn't know what to do with me. My liver levels kept going

up and down, I had too much blood volume and too much iron in my

blood. I have been getting progressively more tired over the years,

and take more than one naps daily.

I had a doctor, 4 years ago, accuse me of being a closet alcoholic

(?), and he said I couldn't be helped until I admitted " my

Problem " !! I changed to women doctors after that, they admitted

there was something there, but decided to " keep an eye " on it,

thinking it was porphyria cutanea tarda (might well be, and might be

part of the Hep C). My last doctor got transfered and was replaced

by another woman. I went for my annual physical, with all the blood

work. She asked me about the scars on my leg, and what kind of

surgery I had. I told her about it, and she asked me if I ever had a

blood transfusion. I told her I had them twice after surgery, when I

was 10 and when I was 12. She said as long as she already had my

blood, she wanted permission to check it for Hep C. I told her ok.

It came back positive, and she sent me to a hepatologist.

He took 22 vials of blood, collapsed my vein, but no big deal. The

blood tests showed a low RNA factor, so it's virtually impossible

that I transferred it on to my children, thank God! I also had an

ultrasound which showed some fat on my liver. Next Friday, I go in

for a 23-hour admit to have a liver biopsy done. My insurance

company sent me a letter today, saying they approve of the biopsy,

but that doesn't mean they will pay for it! The doctor wanted to do

the biopsy on May 31, but I had my national breed specialty for my

dog this week, and I wasn't going to let anything get in the way of

it! I figured, I've had it for probably 30 years, what does a couple

of weeks matter? And I've had a wonderful week, but now it is over

and I am scared to death thinking about what's ahead, yet at the same

time, I'm so glad someone finally found out what was wrong with me.

I didn't know the term " brain fog " and thought I was having early

Alzheimers.

I've been lurking here for about a month, and you all seem like such

nice people. Can I ask you all for advice? I don't even know what

I'm asking for - about treatment, about what to ask the doctor, about

how to deal with insurance (yeah, I know they lump us into the same

category as AIDS patients now), and what this " list " is for that you

have to wait for treatment?

I am so in the dark, that any advice or suggestions you can give me

would be greatly appreciated, about *anything* to do with this awful

disease.

Oh, BTW, I am on a scrapbooking list, and know a thing or two

about computer viruses. Yes, they *can* be transmitted over , I

am living proof! There is a woman named Yani who lives in Puerto

Rico who is on my list. I only checked messages from the website,

through Internet Explorer. Somehow, the virus got into her computer

and sent a message to the list. Since English is her second

language, and the message said " Take a look to the attachment " , I

thought it was a scrapbooking layout she had posted to share with

us. The title of the attachment was " Emmanuel.exe " . It was just

after Christmas, and she had just had a little boy, so I thought it

was a picture of the baby. At the time, I was on the internet on my

DH's business computer. Wiped the whole sucker out, LOL! The silver

lining was that he went to a used computer store and got me my own, I

now have it protected with McAfee online, they give me updates when

they are available, and it's the best $25 a year I ever spent. Even

better, I don't have to get " permission " to go online! Internet

Explorer is the worst for accepting viruses, but with McAfee, if I

try to open an infected attachment, all these bells and whistles go

off, telling you not to continue. DO NOT ever open an attachment

that has .exe at the end of it, it means it is an executable file

that will alter your computer.

Anyway, sorry to write you all a novel as my first post, and

apologize for the eyestrain! It's just that I am bouncing off the

walls about all of this, and am so scared to be here. I've had this

uneasy feeling since I was a kid that there was something majorly

wrong, and now I found out that there is. I just don't know where to

go from here, and would appreciate any advice you all can give me.

Hugs,

Marilyn

[Guest guest]

Hi Marilyn,

My name is Pamela and I was diagnosed with hep c three years ago. I tried alternative medication. But it did not clear the virus. I am on the waiting list. It is a pain I have been waiting for almost three months now. You should look for your alt & ast levels and your viral load and genotype.

1a & 1b are a little harder to cure than 2 & 3. I have had two biospys in the last two years. They are really nothing to worry about. You may have a pain in your shoulder afterwards pain is transferred somehow to your shoulder. That happened to me on my first one. But my second one I had hardly no pain at all just a little uncomfortable. If you need a hep c friend I'm here for ya...Hope everyone has a great day...TGIF.

Friends forever

God Bless

Pamela Rae/Sablelovely

-- New Here

Hi Everybody,My name is Marilyn and I was diagnosed with Hep C genotype 1 in April. I have been going through a lot of hurry up and wait tests since then. I started having symptoms almost 12 years ago, but the doctors didn't know what to do with me. My liver levels kept going up and down, I had too much blood volume and too much iron in my blood. I have been getting progressively more tired over the years, and take more than one naps daily.I had a doctor, 4 years ago, accuse me of being a closet alcoholic (?), and he said I couldn't be helped until I admitted "my Problem"!! I changed to women doctors after that, they admitted there was something there, but decided to "keep an eye" on it, thinking it was porphyria cutanea tarda (might well be, and might be part of the Hep C). My last doctor got transfered and was replaced by another woman. I went for my annual physical, with all the blood work. She asked me about the scars on my leg, and what kind of surgery I had. I told her about it, and she asked me if I ever had a blood transfusion. I told her I had them twice after surgery, when I was 10 and when I was 12. She said as long as she already had my blood, she wanted permission to check it for Hep C. I told her ok. It came back positive, and she sent me to a hepatologist.He took 22 vials of blood, collapsed my vein, but no big deal. The blood tests showed a low RNA factor, so it's virtually impossible that I transferred it on to my children, thank God! I also had an ultrasound which showed some fat on my liver. Next Friday, I go in for a 23-hour admit to have a liver biopsy done. My insurance company sent me a letter today, saying they approve of the biopsy, but that doesn't mean they will pay for it! The doctor wanted to do the biopsy on May 31, but I had my national breed specialty for my dog this week, and I wasn't going to let anything get in the way of it! I figured, I've had it for probably 30 years, what does a couple of weeks matter? And I've had a wonderful week, but now it is over and I am scared to death thinking about what's ahead, yet at the same time, I'm so glad someone finally found out what was wrong with me. I didn't know the term "brain fog" and thought I was having early Alzheimers. I've been lurking here for about a month, and you all seem like such nice people. Can I ask you all for advice? I don't even know what I'm asking for - about treatment, about what to ask the doctor, about how to deal with insurance (yeah, I know they lump us into the same category as AIDS patients now), and what this "list" is for that you have to wait for treatment? I am so in the dark, that any advice or suggestions you can give me would be greatly appreciated, about *anything* to do with this awful disease.Oh, BTW, I am on a scrapbooking list, and know a thing or two about computer viruses. Yes, they *can* be transmitted over , I am living proof! There is a woman named Yani who lives in Puerto Rico who is on my list. I only checked messages from the website, through Internet Explorer. Somehow, the virus got into her computer and sent a message to the list. Since English is her second language, and the message said "Take a look to the attachment", I thought it was a scrapbooking layout she had posted to share with us. The title of the attachment was "Emmanuel.exe". It was just after Christmas, and she had just had a little boy, so I thought it was a picture of the baby. At the time, I was on the internet on my DH's business computer. Wiped the whole sucker out, LOL! The silver lining was that he went to a used computer store and got me my own, I now have it protected with McAfee online, they give me updates when they are available, and it's the best $25 a year I ever spent. Even better, I don't have to get "permission" to go online! Internet Explorer is the worst for accepting viruses, but with McAfee, if I try to open an infected attachment, all these bells and whistles go off, telling you not to continue. DO NOT ever open an attachment that has .exe at the end of it, it means it is an executable file that will alter your computer. Anyway, sorry to write you all a novel as my first post, and apologize for the eyestrain! It's just that I am bouncing off the walls about all of this, and am so scared to be here. I've had this uneasy feeling since I was a kid that there was something majorly wrong, and now I found out that there is. I just don't know where to go from here, and would appreciate any advice you all can give me.Hugs,Marilyn

[Guest guest]

Hi Marilyn,

My name is Terri. There are two of us, I spell my name with two R's the other with one. This is a wonderful website. Even if we can't answer questions, someone is always around to give you a hug! Welcome aboard.

mwbobby <marilynwilkinson@...> wrote: Hi Everybody,My name is Marilyn and I was diagnosed with Hep C genotype 1 in April. I have been going through a lot of hurry up and wait tests since then. I started having symptoms almost 12 years ago, but the doctors didn't know what to do with me. My liver levels kept going up and down, I had too much blood volume and too much iron in my blood. I have been getting progressively more tired over the years, and take more than one naps daily.I had a doctor, 4 years ago, accuse me of being a closet alcoholic (?), and he said I couldn't be helped until I admitted "my Problem"!! I changed to women doctors after that, they admitted there was something there, but decided to "keep an eye" on it, thinking it was porphyria cutanea tarda (might well be, and might be part of the Hep C). My last doctor got transfered and was replaced by another woman. I went for my annual physical, with all the blood work. She asked me about the scars on my leg, and what kind of surgery I had. I told her about it, and she asked me if I ever had a blood transfusion. I told her I had them twice after surgery, when I was 10 and when I was 12. She said as long as she already had my blood, she wanted permission to check it for Hep C. I told her ok. It came back positive, and she sent me to a hepatologist.He took 22 vials of blood, collapsed my vein, but no big deal. The blood tests showed a low RNA factor, so it's virtually impossible that I transferred it on to my children, thank God! I also had an ultrasound which showed some fat on my liver. Next Friday, I go in for a 23-hour admit to have a liver biopsy done. My insurance company sent me a letter today, saying they approve of the biopsy, but that doesn't mean they will pay for it! The doctor wanted to do the biopsy on May 31, but I had my national breed specialty for my dog this week, and I wasn't going to let anything get in the way of it! I figured, I've had it for probably 30 years, what does a couple of weeks matter? And I've had a wonderful week, but now it is over and I am scared to death thinking about what's ahead, yet at the same time, I'm so glad someone finally found out what was wrong with me. I didn't know the term "brain fog" and thought I was having early Alzheimers. I've been lurking here for about a month, and you all seem like such nice people. Can I ask you all for advice? I don't even know what I'm asking for - about treatment, about what to ask the doctor, about how to deal with insurance (yeah, I know they lump us into the same category as AIDS patients now), and what this "list" is for that you have to wait for treatment? I am so in the dark, that any advice or suggestions you can give me would be greatly appreciated, about *anything* to do with this awful disease.Oh, BTW, I am on a scrapbooking list, and know a thing or two about computer viruses. Yes, they *can* be transmitted over , I am living proof! There is a woman named Yani who lives in Puerto Rico who is on my list. I only checked messages from the website, through Internet Explorer. Somehow, the virus got into her computer and sent a message to the list. Since English is her second language, and the message said "Take a look to the attachment", I thought it was a scrapbooking layout she had posted to share with us. The title of the attachment was "Emmanuel.exe". It was just after Christmas, and she had just had a little boy, so I thought it was a picture of the baby. At the time, I was on the internet on my DH's business computer. Wiped the whole sucker out, LOL! The silver lining was that he went to a used computer store and got me my own, I now have it protected with McAfee online, they give me updates when they are available, and it's the best $25 a year I ever spent. Even better, I don't have to get "permission" to go online! Internet Explorer is the worst for accepting viruses, but with McAfee, if I try to open an infected attachment, all these bells and whistles go off, telling you not to continue. DO NOT ever open an attachment that has .exe at the end of it, it means it is an executable file that will alter your computer. Anyway, sorry to write you all a novel as my first post, and apologize for the eyestrain! It's just that I am bouncing off the walls about all of this, and am so scared to be here. I've had this uneasy feeling since I was a kid that there was something majorly wrong, and now I found out that there is. I just don't know where to go from here, and would appreciate any advice you all can give me.Hugs,Marilyn

[Guest guest]

Thank you, Terri. I have been following the "one R" or "two R" thread, trying to keep everybody straight! I welcome all the hugs I can get, and send them back to you, too.

Marilyn

Re: New Here

Hi Marilyn, My name is Terri. There are two of us, I spell my name with two R's the other with one. This is a wonderful website. Even if we can't answer questions, someone is always around to give you a hug! Welcome aboard. mwbobby <marilynwilkinson@...> wrote:

[Guest guest]

Welcome to the group, they all are very supportive. Iam also a

mother of 5 and have also had some of the problems you mentioned.

This lifestyle I have found in recent years is the best. Stay with

it and it will be very beneficial to you and your family.

> Hello,

> I've been lurking for a couple weeks and think I better introduce

myself. My name is Robin, I am 37 years old, married mother of three;

18, 5 and 3 years old.

>Non-text portions of this message have been removed]

[Guest guest]

Thanks for the welcome and support, !

Robin

[Guest guest]

Thanks Connie!

Speaking of husbands, mine is interested in trying the diet but doesn't know

his blood type. Does anyone know if there is a place online where we can

order one?

Thanks,

Robin