Hello Everyone

[Guest guest]

We did the beta testing on the proloquo2go. It is cool You can type in any words

and import any pic from your iPhone. It pronounces " bakugan " strangely, but who

doesn't? I use it on my iPhone and my son's itouch for knock knock jokes. It

has endless fun and practical uses. Plus it makes him the envy of his friends.

Ps. Don't download movies onto the same itouch bc then the kids prefer to watch

the movies and play apps instead of using the proloquo2go. Stinker!

Sent from my iPhone

On Oct 11, 2009, at 9:36 AM, sandy lehmann <mommie2chris@...> wrote:

hi, the ipod touch has an app called proloquo2go, i think it has 6 or 7,000

words on it

________________________________

From: h <mick8_7@...>

Sent: Wed, October 7, 2009 9:54:19 AM

Subject: [ ] Hello everyone

My name is Laurie and I have a 9yr old downsyndrome/ autism child named Mic and

have not posted here in eons,Mic is non-verbal and is severely apraxic, I am

wondering I have seen reports that the Itouch is using applications for

communication devices, Im very interested, Mic does have a dynavox its old

outdated and heavy and Im just wondering if anyone here might have some info on

these. My understanding is the application is from itunes I am clueless after

that.And what is the app called? Thanks all, Laurie Drago

__________________________________________________________

Get a sneak peak at messages with a handy reading pane with All new :

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[Guest guest]

Can you give more info on this? I am interested to know if there is some way the

ipod touch can be the " voice " for our non-verbal son, ny, age: almost 12.

Thank you,

>

> hi, the ipod touch has an app called proloquo2go, i think it has 6 or 7,000

words on it

>

> ________________________________

> From: h <mick8_7@...>

>

> Sent: Wed, October 7, 2009 9:54:19 AM

> Subject: [ ] Hello everyone

>

>

> My name is Laurie and I have a 9yr old downsyndrome/ autism child named Mic

and have not posted here in eons,Mic is non-verbal and is severely apraxic, I am

wondering I have seen reports that the Itouch is using applications for

communication devices, Im very interested, Mic does have a dynavox its old

outdated and heavy and Im just wondering if anyone here might have some info on

these. My understanding is the application is from itunes I am clueless after

that.And what is the app called? Thanks all, Laurie Drago

>

> __________________________________________________________

> Get a sneak peak at messages with a handy reading pane with All new

Mail: http://ca.promos./newmail/overview2/

>

>

[Guest guest]

I can not thank you enough for this info! This is exactly what I have been

looking for! Does the ipod touch have sound without head phones or attached

speakers? I haven't figured that out, but I think it has it because it makes a

sound everytime I get a new IM onn it.

>

> hi,  the ipod touch has an app called proloquo2go, i think it has 6 or 7,000

words on it

>

>

>

>

> ________________________________

> From: h <mick8_7@...>

>

> Sent: Wed, October 7, 2009 9:54:19 AM

> Subject: [ ] Hello everyone

>

>  

> My name is Laurie and I have a 9yr old downsyndrome/ autism child named Mic

and have not posted here in eons,Mic is non-verbal and is severely apraxic, I am

wondering I have seen reports that the Itouch is using applications for

communication devices, Im very interested, Mic does have a dynavox its old

outdated and heavy and Im just wondering if anyone here might have some info on

these. My understanding is the application is from itunes I am clueless after

that.And what is the app called? Thanks all, Laurie Drago

>

>

>

>

>

> __________________________________________________________________

> Get a sneak peak at messages with a handy reading pane with All new

Mail: http://ca.promos./newmail/overview2/

>

>

[Guest guest]

Yep....it does have sound without headphones.  you can even adjust

the volume!

glad this is what you were looking for, so much cheaper than the

other devices which cost thousands more. Plus it's way cooler!

sandy

[Guest guest]

does anyone know an the apps that come on the itouch be removed and then ONLY

have the proloquo2go app on it? thanks, otherwise my niece will get distracted

by anything else on it!!

also- does it matter which 3rd generation itouch one has to get?

thanks,

Iveta

>

> hi, the ipod touch has an app called proloquo2go, i think it has 6 or 7,000

words on it

>

> ________________________________

> From: h <mick8_7@...>

>

> Sent: Wed, October 7, 2009 9:54:19 AM

> Subject: [ ] Hello everyone

>

>

> My name is Laurie and I have a 9yr old downsyndrome/ autism child named Mic

and have not posted here in eons,Mic is non-verbal and is severely apraxic, I am

wondering I have seen reports that the Itouch is using applications for

communication devices, Im very interested, Mic does have a dynavox its old

outdated and heavy and Im just wondering if anyone here might have some info on

these. My understanding is the application is from itunes I am clueless after

that.And what is the app called? Thanks all, Laurie Drago

>

> __________________________________________________________

> Get a sneak peak at messages with a handy reading pane with All new

Mail: http://ca.promos./newmail/overview2/

>

>

[Guest guest]

touch and hold your finger on the app you want to delete until the box starts

shaking and has a little X in the corner.  touch it again to delete.  You cant

delete certain ones that it comes with though (like settings, etc).  You can

move them to a back page though (there are 10 pages on the iphone, thinking the

itouch would be similar)

From: lucy4gets <lucy2max@...>

Subject: [ ] Re: Hello everyone

Date: Monday, October 12, 2009, 9:05 PM

does anyone know an the apps that come on the itouch be removed and then ONLY

have the proloquo2go app on it? thanks, otherwise my niece will get distracted

by anything else on it!!

[Guest guest]

I'd check out " The Later Talker " ...that is the best book and I know anyone in

this group would recommend it. My son is 3 yrs old, and has been diagnosed w/

apraxia, what he does and what your daughter does sound a lot alike. He has

major temper tantrums also. Its very frustrating...alot of people tell me to not

worry also, he'll grow out of it, but as a mother you know your gut

instinct...follow it. I'd get her evaluated by a speech language pathologist

(SLP) soon. Early intervention is key! Keep us updated!

>

> Hi, my name is Kendra and I am the mother of a beautiful, smart, girly-girl

princess named Sophia. Sophia is 22 months old. Sophia never really babbled

much as an infant and as of now only says " Dada " " Mama " " Mum-mum " " Na-naw(g-ma "

" Neh(Yeah) " " Muuuh(Moo) when she sees a cow " and " who who(choo-choo) when she

sees a train " . She says random babbles and unrecognizable words. For the past

few days she has pretty much been only using the syllable " Na " and making

various sentences out of that i.e. " Na nana naaaaan a nannnaaa " and stuff

like that. She is very loud at times and likes to " Yell " that is what we call

it. She also points to things she wants and says " Aahhh " and puts her hands

out. She is on the spoiled side, has temper tantrums and is easily frustrated.

She is very smart like I said before and knows what things are. You can ask her

to do something and most of the time she does it (she is testy sometimes. When

I get picture books or regular book out to read. I can ask her where something

is i.e. " Sophia....where is the apple? " and she will quickly point to the

apple. She knows almost everything I ask her and sometimes surprises me with

things she knows. I can tell her simple dance instructions and she can do them.

She knows songs and humms along and does motions and does SO MUCH more. I am

very proud of her but the one thing that has been bugging me for a while is her

speech. Everyone tells me not to worry, but as a mother it is hard for me not

to. Others are quick to say she has autism without even knowing my daughter. I

am a stay at home mom and am rarely away from her. Her Dad works 12 hour shifts

4 days a week. So it is usually just her and I every day. She is not around

other children much and we haven't had much consistency in the past few months

when my husband was laid off and we had to move 3 different times in 5 months.

We are now settled, but trying to unpack and get our lives back together. Oh,

and she recently has taken a liking again to her Paci. It is like her security

blanket and after all the stress and stuff we have been through, she has picked

it back up and wants it by her side constantly.

> I am wanting more information on Late talking and some support. I would like

to know if others have had similar experiences with their children and more

insight on what may be the matter if anything and what I can do to help her

speech. Thanks for reading and Merry Christmas Everyone. Kendra, Devin and

Sophia

>

[Guest guest]

Hi Barbara, not many people on here talk about females. My girlfriends daughter is almost 20 and I believe she has some form of this, but, her mom and her have resisted finding out, well, her mom says she will take her and never does. Her daughter laughs when we mention it. Yet, she has no friends for the past 4 years and probably would never get off the computer if we did not say something. I am not sure this will help, I have known this girl since she was 14 and have seen her resist going to almost any social situation and rarely speaking, she can go days without saying much of anything. If she does have some form of aspergers it is good you are finding out now, I still wish I knew if an expert agreed with me, might make our lives easier on how to proceed, so, at least you will have a better

understanding of her behaviors, good luck!

From: Barbara Pinckney <b-pinckney@...>Subject: ( ) Hello everyoneAspergers Treatment Date: Monday, March 8, 2010, 1:23 PM

My name is Barb and I am new here. We just learned that our 12 year old daughter, Liz, most likely has AS. We are still going through the eval process, but all the signs are there. They have been for a while, but I never recognized the significance of them. Now that she is in middle school, all her problems are more pronounced.

I am here to learn all I can about how to help her, and to share in your support system.

Thank you!

Barb

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[Guest guest]

Hi Barb,

Welcome ! I am finding this group to be a great informative group!

I have a feeling it is going to be my savior group ! : )

I am Elinor mom to Maeci soon to be 12 y.o. grade 6 and in middle school !

I am new here as well. Maeci has just began her testing as well.

The place that is testing Maeci gave me a GADS form to fill out yesterday.

I think I answered yes to 85% of the questions. We hope to have a dx by April 8th. : )

I am thinking that hormones/ puberty are intensifying things

for Maeci. I am happy you are here! I hope to speak with you

again in the future!

Hugs,

Elinor

From: Barbara Pinckney <b-pinckney@...>Aspergers Treatment Sent: Mon, March 8, 2010 3:23:30 PMSubject: ( ) Hello everyone

My name is Barb and I am new here. We just learned that our 12 year old daughter, Liz, most likely has AS. We are still going through the eval process, but all the signs are there. They have been for a while, but I never recognized the significance of them. Now that she is in middle school, all her problems are more pronounced.

I am here to learn all I can about how to help her, and to share in your support system.

Thank you!

Barb

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[Guest guest]

Hi Elinor, so nice to meet you!

From: elliemullin@...Date: Tue, 9 Mar 2010 08:03:56 -0800Subject: Re: ( ) Hello everyone

Hi Barb,

Welcome ! I am finding this group to be a great informative group!

I have a feeling it is going to be my savior group ! : )

I am Elinor mom to Maeci soon to be 12 y.o. grade 6 and in middle school !

I am new here as well. Maeci has just began her testing as well.

The place that is testing Maeci gave me a GADS form to fill out yesterday.

I think I answered yes to 85% of the questions. We hope to have a dx by April 8th. : )

I am thinking that hormones/ puberty are intensifying things

for Maeci. I am happy you are here! I hope to speak with you

again in the future!

Hugs,

Elinor

From: Barbara Pinckney <b-pinckneyhotmail>Aspergers Treatment Sent: Mon, March 8, 2010 3:23:30 PMSubject: ( ) Hello everyone

My name is Barb and I am new here. We just learned that our 12 year old daughter, Liz, most likely has AS. We are still going through the eval process, but all the signs are there. They have been for a while, but I never recognized the significance of them. Now that she is in middle school, all her problems are more pronounced.

I am here to learn all I can about how to help her, and to share in your support system.

Thank you!

Barb

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[Guest guest]

Thank you, Huddy, it is nice to meet you. As I see it, getting a diagnosis of AS will not change anything about who Liz is, but will help us know how to help her. She was diagnosed with ADHD when she was 8, but I now wonder if that was a misdiagnosis. As I understand it, early AS can look a lot like ADHD. We changed her diet and it made a big difference. She was doing fine in school, even making honor roll and sometimes high honor role. We noticed some "quirky" behaviors but didn't connect them to anything until recently. She is in 7th grade now, and while she is still doing well on tests, she has difficulty when it comes to longer term assignments and anything that involves schedules. She is constantly missing her trumpet lessons, because the time changes every week. She never showed anti-social behavior, but is a bit socially awkward. She has a core group of friends—mainly boys, which I now understand makes sense if she has AS, because of the difference in the way girls relate and boys relate—but shies away from social events like dances. She will talk non-stop about a subject that interests her but finds it difficult to carry on "give and take" conversations otherwise. She is a messy eater and a sloppy dresser, and tends to drop food wrappers and such on the floor. Often she seems to drift into her own world, and is constantly doodling in class. She is slim, but did poorly in a recent physical fitness test because she is somewhat uncoordinated. All of this just came together for me over the past week or so. We have been dealing with the school guidance counselor and school psychologist, but she sees her doctor tomorrow to start the official eval process. From: huddy_68@...Date: Mon, 8 Mar 2010 17:06:00 -0800Subject: Re: ( ) Hello everyone

Hi Barbara, not many people on here talk about females. My girlfriends daughter is almost 20 and I believe she has some form of this, but, her mom and her have resisted finding out, well, her mom says she will take her and never does. Her daughter laughs when we mention it. Yet, she has no friends for the past 4 years and probably would never get off the computer if we did not say something. I am not sure this will help, I have known this girl since she was 14 and have seen her resist going to almost any social situation and rarely speaking, she can go days without saying much of anything. If she does have some form of aspergers it is good you are finding out now, I still wish I knew if an expert agreed with me, might make our lives easier on how to proceed, so, at least you will have a better

understanding of her behaviors, good luck!

From: Barbara Pinckney <b-pinckneyhotmail>Subject: ( ) Hello everyoneAspergers Treatment Date: Monday, March 8, 2010, 1:23 PM

My name is Barb and I am new here. We just learned that our 12 year old daughter, Liz, most likely has AS. We are still going through the eval process, but all the signs are there. They have been for a while, but I never recognized the significance of them. Now that she is in middle school, all her problems are more pronounced.

I am here to learn all I can about how to help her, and to share in your support system.

Thank you!

Barb

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[Guest guest]

"She will talk non-stop about a subject that interests her but finds it difficult to carry on "give and take" conversations otherwise. She is a messy eater and a sloppy dresser, and tends to drop food wrappers and such on the floor. Often she seems to drift into her own world, and is constantly doodling in class'

That all sounds familiar! Sloppy dressing and dropping food wrappers all over, hah, I spend some time cleaning up after her each day, my asking her to try to clean up those things has not gotten much better at 20, I can barely have more then a 5 minute talk with her, she just starts humming when I speak or puts her head phones on, or, a new one, turning the lights off, have not figured that one out yet Though, this drives me crazy I have learned to be calm about it, hah.

I guess the tough part is finding the line between having these girls stay interactive with others, but, not to overload them, just my uneducated opinion.

My girlfriends daughter did get accepted to art school last week, and, she found a job drawing caricatures at a park, so, things are looking up!

From: Barbara Pinckney <b-pinckneyhotmail (DOT) com>Subject: ( ) Hello everyoneAspergers TreatmentDate: Monday, March 8, 2010, 1:23 PM

My name is Barb and I am new here. We just learned that our 12 year old daughter, Liz, most likely has AS. We are still going through the eval process, but all the signs are there. They have been for a while, but I never recognized the significance of them. Now that she is in middle school, all her problems are more pronounced.

I am here to learn all I can about how to help her, and to share in your support system.

Thank you!

Barb

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[Guest guest]

That is great, Huddy. Good for her. Liz is quite the little artist too, but she wants to be a writer when she grows up. From: huddy_68@...Date: Thu, 18 Mar 2010 15:03:00 -0700Subject: RE: ( ) Hello everyone

"She will talk non-stop about a subject that interests her but finds it difficult to carry on "give and take" conversations otherwise. She is a messy eater and a sloppy dresser, and tends to drop food wrappers and such on the floor. Often she seems to drift into her own world, and is constantly doodling in class'

That all sounds familiar! Sloppy dressing and dropping food wrappers all over, hah, I spend some time cleaning up after her each day, my asking her to try to clean up those things has not gotten much better at 20, I can barely have more then a 5 minute talk with her, she just starts humming when I speak or puts her head phones on, or, a new one, turning the lights off, have not figured that one out yet Though, this drives me crazy I have learned to be calm about it, hah.

I guess the tough part is finding the line between having these girls stay interactive with others, but, not to overload them, just my uneducated opinion.

My girlfriends daughter did get accepted to art school last week, and, she found a job drawing caricatures at a park, so, things are looking up!

From: Barbara Pinckney <b-pinckneyhotmail (DOT) com>Subject: ( ) Hello everyoneAspergers TreatmentDate: Monday, March 8, 2010, 1:23 PM

My name is Barb and I am new here. We just learned that our 12 year old daughter, Liz, most likely has AS. We are still going through the eval process, but all the signs are there. They have been for a while, but I never recognized the significance of them. Now that she is in middle school, all her problems are more pronounced.

I am here to learn all I can about how to help her, and to share in your support system.

Thank you!

Barb

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[Guest guest]

Gluten free diet and if that doesn't completely get rid of it, take away dairy.

Only thing that helped my daughter. Her skin problems are COMPLETELY gone and

her skin was falling off!

Jen

>

> My 8 yr. old AS son is being treated for Psoriasis.

> He has been on a prescription cream since August.

> With winter and cold weather it is acting up.

> His head is the worst - can not seem to get it under control.

>

> Has anyone had to deal with this and what have you done that helps.

>

> Thank you for any input.

>

> H.

>

[Guest guest]

I agree, my son had eczema that wouldn't go away either.  Once we went gluten free, it went away and for the most part, hasn't returned.  We drink real milk (straight from the cow) but not any store bought milk or milk products.

On Sat, Mar 20, 2010 at 11:53 AM, Whitewave <jenuhferr@...> wrote:

 

Gluten free diet and if that doesn't completely get rid of it, take away dairy. Only thing that helped my daughter. Her skin problems are COMPLETELY gone and her skin was falling off!

Jen

>

> My 8 yr. old AS son is being treated for Psoriasis.

> He has been on a prescription cream since August.

> With winter and cold weather it is acting up.

> His head is the worst - can not seem to get it under control.

>

> Has anyone had to deal with this and what have you done that helps.

>

> Thank you for any input.

>

> H.

>

-- McAllisterFB:  www.facebook.com/healfrominsideoutTwitter:  www.twitter.com/healinginside

Blog:  http://healingfrominsideout.blogspot.comReiki II practitioner, #1 alternative treatment recommended by Dr. OzHerbal consultations

[Guest guest]

I'm not sure that diet alone can cure an auto immune disease like

psoriasis. The skin doesn't really fall off - it over produces, causes

it to build up in thick layers on the skin. It can be extremely

painful and also it can be itchy to the point of pain. There are a

variety of places psoriasis will live on the body and I have found that

it gets worse as I get older - that might be me. It is also related to

a number of health problems as well so it is not to be taken lightly!

If diet helps, then by all means, do that. But psoriasis will tend to

come and go on it's own. It will also improve with treatment for a

while, then stop responding to that treatment. I have had that happen

dozens of times during my life so far! So what works for now, may not

work in two months. Creams and lotions only help reduce the outcome of

the disease. They have serious new meds out there now that actually

work on the disease at the cellular level. I started one a few years

ago and it is amazing how well it works.

Scalp psoriasis can be horrible and itchy too! You should look for

shampoo's that have " coal tar " in them. Nasty smelling stuff but it

feels nice. There are some OTC meds you can get for it too. Go see a

dermatologist for real meds because they have such great ones out these

days. My dermatologist gave me some foam stuff for the scalp once that

worked overnight. I swear, put it on at night, wake up with normal

skin or close to it. It was amazing stuff. Also, winter can bring out

the worst in the disease so things may ease up in the summer time.

Swimming and sunshine can help sometimes. But I really recommend

finding a good dermatologist because they have good meds today to

combat this.

Roxanna

Whenever I feel blue, I start breathing again.

( ) Re: Hello everyone

Gluten free diet and if that doesn't completely get rid of it, take

away dairy. Only thing that helped my daughter. Her skin problems are

COMPLETELY gone and her skin was falling off!

Jen

>

> My 8 yr. old AS son is being treated for Psoriasis.

> He has been on a prescription cream since August.

> With winter and cold weather it is acting up.

> His head is the worst - can not seem to get it under control.

>

> Has anyone had to deal with this and what have you done that helps.

>

> Thank you for any input.

>

> H.

>

[Guest guest]

I would not press for a liver biopsy because all of the symptoms you express indicate end stage liver disease. I hate to say that to you. Any doctor worth his salt could diagnose those symptoms. The real shame is that it went this far before anyone, even you realized somthing was wrong this late in the progression. Were you seeing a doctor at any time in the last ten years? Unless you are one of the rare individuals that has rapid development somebody dropped the ball here. I am not a doctor and at this point you need a specialist. Preferably a hepatologist or internal medicine, an expert. It may be too late but I have heard that low dose interferon can halt the damage caused by the virus, however, at this point the damage is almost irreversible. You need to do everything possible to stop

further damage. That includes diet, exercise (sweating eliminates toxins otherwise passed by the liver) rest, and a lot of love. I hope this is not too heavy for you. Please take care. Now, this very case is a great example of why the medical community, the goverment and all of us need to get this message out to people to get tested, get aware. It goes to what former surgeon general Evrett Koop siad about hepatitisC, that by the end of the century a large contingent of people unaware that they have had this disease for twenty or thirty years are going to swamp the health care system with end stage liver disease, many of them needing a transplant because they did not catch it soon enough. Wow, I am just flabbergasted. Randy O Website-- SuncoastHepCFriends.OrgForum -- Suncoast HepC Friends Forum

[Guest guest]

Hi Jane

Welcome to the group.

It sounds like you have some issues to deal with.

First off, relax. Everyone is scared and shocked at first.

Hep C takes a long time to progress in most cases.

You probably have time to deal with all your health issues.

I am also a 1B genotype.

I was diagnosed 2 years ago, and what a shock.

I thought I was going to die yesterday.

It didnt happen.

I knew nothing about HCV, or what/where my liver was/did.

Needless to say I wasnt very health concious in my life.

Your viral load will go up and down, and is not really a good indicator of liver damage, or HCV progression.

It just shows how many bugs are floating about in your blood at any given time.

My last lab showed I was somewhere around 2 mil VL, up from 86K at diagnosis.

All my other labs are just about normal.

I have gathered info relating to HCV, and built a library for everyones use.

You might browse it, and see if anything there helps you understand better.

Click this link:

http://health.dir./group/ /links

Its not complete, and possibly never will be, but it contains a lot of good info.

Its a good start.

I try to take folks from JUST DIAGNOSED to everything following.

A liver biopsy is a good way to know exactly what state your liver is in.

Doctors can guess, and maybe be pretty close, but a biopsy would remove doubt.

Of course though, you should probably follow your doctors leads.

Your doctors will try to do what they think is best for you at any given point in time.

We have some other medical folks here who might understand better than me what things mean.

I have little background in medicine personally, but I am learning.

Each person teaches me, and I try to help out others with what I know too.

I, personally, would be very interested in anything you care to share.

Just tell me like a dummy, so that I can better understand. lol :-)

Diet is very important. So is lifestyle.

Dont do alcohol or smoke. Exercise, and get sleep.

Think about the things that arent so good for your liver, and health.

And most of all, always stay positive.

Remember, there are answers, and you arent alone.

Feel free to ask questions, or share your opinions and experiances.

Info is our best tool, and will always help someone else.

We will all do our best to share in return.

I am here to help you, and everyone, with research.

Just hollar.

love

don in ks

From: Jane <janes6749@...>Subject: [ ] Hello Everyone Date: Sunday, April 18, 2010, 7:23 PM

Hi everyone, Nice to meet all of you. I was diagnosed with HepC about a month ago after going through a ton of test. I am still in shock and really having a hard time accepting the diagnoses but I guess labs don't lie. It all started with low wbc at 2.2, low rbc at 3.0 and low platelets at 30-50 and horrible pain. I have had ultrasounds, CT scan and dopplers study. The first thing they found was I have a very enlarged spleen at 20.2cm and portal hyptertension with the portal vein very enlarged also. The pain sometimes is unbearable. The CT shows numerous varices around the esophagus and the splenic hilum and several varices in the left renal vein and the central portion of the left renal vein enlarge suggesting splenorenal shunt. Varicies are also seen deep in the midline of the adbomen and pelvis.

Now, I was referred to a gastro for eval and he is wanting to do a procedure to band the varicies in my throat before any other treatment. Has anyone had this procedure or know anything about it? He also says there is no need for liver biopsy he already knows what it will show, which is a damaged liver. Should I insist on liver biopsy anyway? oh yea my labs show I have type 1b whatever that means, other than that is the worst type to have and treat. My viral load count was 137020 which the gastro was surprised, he thought would be much higher.

Thank God I am a Positive thinking person otherwise I would be freaking out.

The first day I walked out of the Dr office with this diagnosis I went straight to the bookstore and started reading. I left there and went and bought me a Jack la Lane juicer and started juicing every thing that I could that had an antioxident in it. I have felt better so I checked my labs (advantage of working in medical field) and my blood levels was up to almost normal. I repeated my CT scan of my spleen and it had shrunk down to 18.0cm, which doesn't seem like a lot but pain wise I can feel the difference.

Thanks for listening

Jane

[Guest guest]

Don, thanks for your suppotive reply. I don't drink, smoke, nor do drugs, never has been a part of my life. I don't judge those that do, it's just not for me. My family is my life. I had a blood transfusion 34 years ago during the birth of my son, so I figure that is where the nightmare started. My gastro Dr says he thinks I have a good chance with the treatment, he is saying 65%, he is suppose to be the best specialist in HepC in my area. From what I have read the treatment is pretty scarey. Anybody had success with it? Are the side effects as bad as what I'm reading? I'm sorry my head is just spinning in all directions.

Thanks,

Jane

From: Christ <ludichrist2000@...> Sent: Sun, April 18, 2010 6:35:47 PMSubject: Re: [ ] Hello Everyone

Hi Jane

Welcome to the group.

It sounds like you have some issues to deal with.

First off, relax. Everyone is scared and shocked at first.

Hep C takes a long time to progress in most cases.

You probably have time to deal with all your health issues.

I am also a 1B genotype.

I was diagnosed 2 years ago, and what a shock.

I thought I was going to die yesterday.

It didnt happen.

I knew nothing about HCV, or what/where my liver was/did.

Needless to say I wasnt very health concious in my life.

Your viral load will go up and down, and is not really a good indicator of liver damage, or HCV progression.

It just shows how many bugs are floating about in your blood at any given time.

My last lab showed I was somewhere around 2 mil VL, up from 86K at diagnosis.

All my other labs are just about normal.

I have gathered info relating to HCV, and built a library for everyones use.

You might browse it, and see if anything there helps you understand better.

Click this link:

http://health. dir.groups. / group/HepCWebWar riors/links

Its not complete, and possibly never will be, but it contains a lot of good info.

Its a good start.

I try to take folks from JUST DIAGNOSED to everything following.

A liver biopsy is a good way to know exactly what state your liver is in.

Doctors can guess, and maybe be pretty close, but a biopsy would remove doubt.

Of course though, you should probably follow your doctors leads.

Your doctors will try to do what they think is best for you at any given point in time.

We have some other medical folks here who might understand better than me what things mean.

I have little background in medicine personally, but I am learning.

Each person teaches me, and I try to help out others with what I know too.

I, personally, would be very interested in anything you care to share.

Just tell me like a dummy, so that I can better understand. lol :-)

Diet is very important. So is lifestyle.

Dont do alcohol or smoke. Exercise, and get sleep.

Think about the things that arent so good for your liver, and health.

And most of all, always stay positive.

Remember, there are answers, and you arent alone.

Feel free to ask questions, or share your opinions and experiances.

Info is our best tool, and will always help someone else.

We will all do our best to share in return.

I am here to help you, and everyone, with research.

Just hollar.

love

don in ks

From: Jane <janes6749 (DOT) com>Subject: [ ] Hello Everyone Date: Sunday, April 18, 2010, 7:23 PM

Hi everyone, Nice to meet all of you. I was diagnosed with HepC about a month ago after going through a ton of test. I am still in shock and really having a hard time accepting the diagnoses but I guess labs don't lie. It all started with low wbc at 2.2, low rbc at 3.0 and low platelets at 30-50 and horrible pain. I have had ultrasounds, CT scan and dopplers study. The first thing they found was I have a very enlarged spleen at 20.2cm and portal hyptertension with the portal vein very enlarged also. The pain sometimes is unbearable. The CT shows numerous varices around the esophagus and the splenic hilum and several varices in the left renal vein and the central portion of the left renal vein enlarge suggesting splenorenal shunt. Varicies are also seen deep in the midline of the adbomen and pelvis.

Now, I was referred to a gastro for eval and he is wanting to do a procedure to band the varicies in my throat before any other treatment. Has anyone had this procedure or know anything about it? He also says there is no need for liver biopsy he already knows what it will show, which is a damaged liver. Should I insist on liver biopsy anyway? oh yea my labs show I have type 1b whatever that means, other than that is the worst type to have and treat. My viral load count was 137020 which the gastro was surprised, he thought would be much higher.

Thank God I am a Positive thinking person otherwise I would be freaking out.

The first day I walked out of the Dr office with this diagnosis I went straight to the bookstore and started reading. I left there and went and bought me a Jack la Lane juicer and started juicing every thing that I could that had an antioxident in it. I have felt better so I checked my labs (advantage of working in medical field) and my blood levels was up to almost normal. I repeated my CT scan of my spleen and it had shrunk down to 18.0cm, which doesn't seem like a lot but pain wise I can feel the difference.

Thanks for listening

Jane

[Guest guest]

Hi Jane

Yes some folks are sucessful with HCV TX.

You have a pretty even chance with current treatment, but the FDA is allowing the Protease Inhibitor to be added to the Interferon/Ribavirin TX pretty soon.

For us 1B's, this is great news.

Possibly shorter TX time, and better results.

This is what Im waiting for too, but I have another problem that may not let me treat at all.

I have CHF [congestive heart failure].

The HCV TX side effects depends on the person, everyone is different and unpredictable.

Some folks here have said it wasnt so bad.

Others though pulled their hair out.

I believe from what I have read and heard so far, that most people have a 'sort of' rough time, but that it is do-able.

Some have even done it more than once, being non-responders the first go round.

We also have folks here who are looking into alternative protocals.

One lady here did the TX, failed, then repeated with the PI in a clinical trial, and came out SVR [sustained viral responce].

Unfortunately at the same time she was told she was SVR, they found liver cancer.

She is currently recovering from that, and I hope she returns to the group soon, and well.

I miss her. She is a wealth of info and support, and a dear friend to us all.

Jane, I know your being bombarded right now with crazy health news, but try to relax.

I will tell you like I tell everyone, we have hope.

And heres another thing, if the doctor is talking about treatment for you, maybe your other health issues might not be so bad after all.

Thats a good thought.

Hang in there my friend. Take it day by day.

love

don in ks

From: Jane <janes6749 (DOT) com>Subject: [ ] Hello Everyone Date: Sunday, April 18, 2010, 7:23 PM

Hi everyone, Nice to meet all of you. I was diagnosed with HepC about a month ago after going through a ton of test. I am still in shock and really having a hard time accepting the diagnoses but I guess labs don't lie. It all started with low wbc at 2.2, low rbc at 3.0 and low platelets at 30-50 and horrible pain. I have had ultrasounds, CT scan and dopplers study. The first thing they found was I have a very enlarged spleen at 20.2cm and portal hyptertension with the portal vein very enlarged also. The pain sometimes is unbearable. The CT shows numerous varices around the esophagus and the splenic hilum and several varices in the left renal vein and the central portion of the left renal vein enlarge suggesting splenorenal shunt. Varicies are also seen deep in the midline of the adbomen and pelvis.

Now, I was referred to a gastro for eval and he is wanting to do a procedure to band the varicies in my throat before any other treatment. Has anyone had this procedure or know anything about it? He also says there is no need for liver biopsy he already knows what it will show, which is a damaged liver. Should I insist on liver biopsy anyway? oh yea my labs show I have type 1b whatever that means, other than that is the worst type to have and treat. My viral load count was 137020 which the gastro was surprised, he thought would be much higher.

Thank God I am a Positive thinking person otherwise I would be freaking out.

The first day I walked out of the Dr office with this diagnosis I went straight to the bookstore and started reading. I left there and went and bought me a Jack la Lane juicer and started juicing every thing that I could that had an antioxident in it. I have felt better so I checked my labs (advantage of working in medical field) and my blood levels was up to almost normal. I repeated my CT scan of my spleen and it had shrunk down to 18.0cm, which doesn't seem like a lot but pain wise I can feel the difference.

Thanks for listening

Jane

[Guest guest]

Jane,I also contracted Hep C by way of blood transfusion when I had my son 30 years ago. I was diagnosed 5 years ago and have completed treatment. 48 weeks of Peg-Interfuron and Ribavirin. It worked for me. They gave me a 32% chance, your odds are better than mine were. I can tell you all sorts of stories about treatment but that would just be what happened to me. We each handle this treatment so much differently. What happened to me might never happen to you, and what happens to each of us is totally different. Yes, read the side effects and you're gonna scare yourself to death. I had every one of them. But I'm here talking you thru your initial fear. I'd take the treatment again if I needed to. There is nothing to be

afraid of, it is what it is and you will get thru it. That's the crazy thing about this treatment. It's never the same. I came out on the other side and I'm a big old wimp. You will be fine, we are all here to help. Just take it all in, remember to breathe, take a deep breath now..... it's going to be okay. Teri in Chicago From: Jane <janes6749@...> Sent: Sun, April 18, 2010 10:19:25 PMSubject: Re: [ ] Hello Everyone

Don, thanks for your suppotive reply. I don't drink, smoke, nor do drugs, never has been a part of my life. I don't judge those that do, it's just not for me. My family is my life. I had a blood transfusion 34 years ago during the birth of my son, so I figure that is where the nightmare started. My gastro Dr says he thinks I have a good chance with the treatment, he is saying 65%, he is suppose to be the best specialist in HepC in my area. From what I have read the treatment is pretty scarey. Anybody had success with it? Are the side effects as bad as what I'm reading? I'm sorry my head is just spinning in all directions.

Thanks,

Jane

From: Christ <ludichrist2000> Sent: Sun, April 18, 2010 6:35:47 PMSubject: Re: [ ] Hello Everyone

Hi Jane

Welcome to the group.

It sounds like you have some issues to deal with.

First off, relax. Everyone is scared and shocked at first.

Hep C takes a long time to progress in most cases.

You probably have time to deal with all your health issues.

I am also a 1B genotype.

I was diagnosed 2 years ago, and what a shock.

I thought I was going to die yesterday.

It didnt happen.

I knew nothing about HCV, or what/where my liver was/did.

Needless to say I wasnt very health concious in my life.

Your viral load will go up and down, and is not really a good indicator of liver damage, or HCV progression.

It just shows how many bugs are floating about in your blood at any given time.

My last lab showed I was somewhere around 2 mil VL, up from 86K at diagnosis.

All my other labs are just about normal.

I have gathered info relating to HCV, and built a library for everyones use.

You might browse it, and see if anything there helps you understand better.

Click this link:

http://health. dir.groups. / group/HepCWebWar riors/links

Its not complete, and possibly never will be, but it contains a lot of good info.

Its a good start.

I try to take folks from JUST DIAGNOSED to everything following.

A liver biopsy is a good way to know exactly what state your liver is in.

Doctors can guess, and maybe be pretty close, but a biopsy would remove doubt.

Of course though, you should probably follow your doctors leads.

Your doctors will try to do what they think is best for you at any given point in time.

We have some other medical folks here who might understand better than me what things mean.

I have little background in medicine personally, but I am learning.

Each person teaches me, and I try to help out others with what I know too.

I, personally, would be very interested in anything you care to share.

Just tell me like a dummy, so that I can better understand. lol :-)

Diet is very important. So is lifestyle.

Dont do alcohol or smoke. Exercise, and get sleep.

Think about the things that arent so good for your liver, and health.

And most of all, always stay positive.

Remember, there are answers, and you arent alone.

Feel free to ask questions, or share your opinions and experiances.

Info is our best tool, and will always help someone else.

We will all do our best to share in return.

I am here to help you, and everyone, with research.

Just hollar.

love

don in ks

From: Jane <janes6749 (DOT) com>Subject: [ ] Hello Everyone Date: Sunday, April 18, 2010, 7:23 PM

Hi everyone, Nice to meet all of you. I was diagnosed with HepC about a month ago after going through a ton of test. I am still in shock and really having a hard time accepting the diagnoses but I guess labs don't lie. It all started with low wbc at 2.2, low rbc at 3.0 and low platelets at 30-50 and horrible pain. I have had ultrasounds, CT scan and dopplers study. The first thing they found was I have a very enlarged spleen at 20.2cm and portal hyptertension with the portal vein very enlarged also. The pain sometimes is unbearable. The CT shows numerous varices around the esophagus and the splenic hilum and several varices in the left renal vein and the central portion of the left renal vein enlarge suggesting splenorenal shunt. Varicies are also seen deep in the midline of the adbomen and pelvis.

Now, I was referred to a gastro for eval and he is wanting to do a procedure to band the varicies in my throat before any other treatment. Has anyone had this procedure or know anything about it? He also says there is no need for liver biopsy he already knows what it will show, which is a damaged liver. Should I insist on liver biopsy anyway? oh yea my labs show I have type 1b whatever that means, other than that is the worst type to have and treat. My viral load count was 137020 which the gastro was surprised, he thought would be much higher.

Thank God I am a Positive thinking person otherwise I would be freaking out.

The first day I walked out of the Dr office with this diagnosis I went straight to the bookstore and started reading. I left there and went and bought me a Jack la Lane juicer and started juicing every thing that I could that had an antioxident in it. I have felt better so I checked my labs (advantage of working in medical field) and my blood levels was up to almost normal. I repeated my CT scan of my spleen and it had shrunk down to 18.0cm, which doesn't seem like a lot but pain wise I can feel the difference.

Thanks for listening

Jane

[Guest guest]

Just wanted to say hi and tell you what is going on with me. As most of

you know, my RA has hit me the hardest in my feet. Well, I have a large

RA nodule on the outside of my right foot just at the arch. Needless to

say, it has gotten much bigger and is quite painful. I saw my Rheumy

and then my foot dr. I am also going for a MRI to make sure it is not

infected. I will be having surgery soon to remove the nodule. I was so

hoping my surgery days were all over, but I guess not. I am in so much

pain and I can just about stand on my foot. I am taking RX pain meds.

and off my feet most days.

I do read all the posts each day. I haven't talked with Tawny in

awhile, but I will call her and see how she is doing.

I am still dealing with my divorce, and it is just so painful. Dealing

with a broken heart has been just awful. I am still taking one day at a

time as that is all I can really handle.

I hope everyone here is doing better, and I wish you all pain free days

ahead. My RA is still good, thank God. Much love to all of you.

Hugs,

Barbara

[Guest guest]

I have had the endoscopy which is where they put the tube down your throat and

look for damage to the esophagus and stomach. It wasn't as bad as it sounds i

was asleep for the procedure and had no side effects after they didn't find any

damage in my case and I went to work the next morning.

marie

>

> Hi everyone, Nice to meet all of you. I was diagnosed with HepC about a month

ago after going through a ton of test. I am still in shock and really having a

hard time accepting the diagnoses but I guess labs don't lie. It all started

with low wbc at 2.2, low rbc at 3.0 and low platelets at 30-50 and horrible

pain. I have had ultrasounds, CT scan and dopplers study. The first thing they

found was I have a very enlarged spleen at 20.2cm and portal hyptertension with

the portal vein very enlarged also. The pain sometimes is unbearable. The CT

shows numerous varices around the esophagus and the splenic hilum and several

varices in the left renal vein and the central portion of the left renal vein

enlarge suggesting splenorenal shunt. Varicies are also seen deep in the midline

of the adbomen and pelvis.

> Now, I was referred to a gastro for eval and he is wanting to do a procedure

to band the varicies in my throat before any other treatment. Has anyone had

this procedure or know anything about it? He also says there is no need for

liver biopsy he already knows what it will show, which is a damaged liver.

Should I insist on liver biopsy anyway? oh yea my labs show I have type 1b

whatever that means, other than that is the worst type to have and treat. My

viral load count was 137020 which the gastro was surprised, he thought would be

much higher.

> Thank God I am a Positive thinking person otherwise I would be freaking out.

> The first day I walked out of the Dr office with this diagnosis I went

straight to the bookstore and started reading. I left there and went and bought

me a Jack la Lane juicer and started juicing every thing that I could that had

an antioxident in it. I have felt better so I checked my labs (advantage of

working in medical field) and my blood levels was up to almost normal. I

repeated my CT scan of my spleen and it had shrunk down to 18.0cm, which doesn't

seem like a lot but pain wise I can feel the difference.

>

> Thanks for listening

> Jane

>

[Guest guest]

Hello all, i just got my stitches removed from my ear surgery & they will be

removing the inner packing monday i am excited to hear better.

Blessed be marie---------

Sent from AT & T's Wireless network using Mobile Email

- [ ] hello everyone

 

HELLO IT'S JESSICA. I WAS DIAGNOSED IN 07, NOT TO SURE IF YOU GUYS

REMEMBER ME.I WAS HAVING A HOUSING SITUATION BECAUSE OF ME HAVING HEP-C,THE

COUNTY WAS HAVING A PROBLEM PLACING ME IN A SHELTER FOR ME AN MY DAUGHTER AND

HUSBAND. WELL GOOD NEWS,THANKS TO ME NOT TAKING NO FOR AN ANSWER,THE COUNTY PUT

ME IN A HOTEL. AND MY HUSBAND STILL LOOKING FOR EMPLOYMENT. I WAS SUPPOSED TO

START MY TREATMENT BUT COULD NOT AT THE TIME. I STILL CAN'T RIGHT NOW BECAUSE I

AM MY DAUGHTER PRIME CAREGIVER WHILE MY HUSBAND DOES WORK FIRST. BUT I HAVE A

COUPLE QUESTIONS ABOUT CERTAIN THINGS THAT HAS BEEN HAPPENING WITH MY HEALTH.

FOR EXAMPLE.. DOES THE BODY LOOSE CALCIUM BECAUSE OF HEP-C? THANK YOU FOR ALL

YOUR KIND WORDS BEFORE SORRY I WAS GONE FOR A MOMENT BTU REALY NEED TO VENT..

[Guest guest]

marie,You just have good news on top of good news today don't you! Glad your ear is on the mend... must feel good to have the stitches out.. it will feel better on Monday when that packing comes out!Hugs,Teri MOVE ON. It's just a chapter in the past, but don't close the book. Just turn the page.From: Rain Beau <annamariestitt@...> Sent: Sat, October 16, 2010 10:29:03 AMSubject: Re: Re: [ ] hello everyone

Hello all, i just got my stitches removed from my ear surgery & they will be removing the inner packing monday i am excited to hear better.

Blessed be marie---------

Sent from AT & T's Wireless network using Mobile Email

- [ ] hello everyone

HELLO IT'S JESSICA. I WAS DIAGNOSED IN 07, NOT TO SURE IF YOU GUYS REMEMBER ME.I WAS HAVING A HOUSING SITUATION BECAUSE OF ME HAVING HEP-C,THE COUNTY WAS HAVING A PROBLEM PLACING ME IN A SHELTER FOR ME AN MY DAUGHTER AND HUSBAND. WELL GOOD NEWS,THANKS TO ME NOT TAKING NO FOR AN ANSWER,THE COUNTY PUT ME IN A HOTEL. AND MY HUSBAND STILL LOOKING FOR EMPLOYMENT. I WAS SUPPOSED TO START MY TREATMENT BUT COULD NOT AT THE TIME. I STILL CAN'T RIGHT NOW BECAUSE I AM MY DAUGHTER PRIME CAREGIVER WHILE MY HUSBAND DOES WORK FIRST. BUT I HAVE A COUPLE QUESTIONS ABOUT CERTAIN THINGS THAT HAS BEEN HAPPENING WITH MY HEALTH. FOR EXAMPLE.. DOES THE BODY LOOSE CALCIUM BECAUSE OF HEP-C? THANK YOU FOR ALL

YOUR KIND WORDS BEFORE SORRY I WAS GONE FOR A MOMENT BTU REALY NEED TO VENT..

48d4e206-8a0b-442a-97fc-7e3b741707fd1.03.01