New to Group

[Guest guest]

>

> Good morning all,

>

> My name is . I am 51 years old and I was diagnosed last month

> w/hep c. My geno type is one which I understand is only 40-50

> responsive to treatment. Just had a liver biopsy this past

> Wednesday, and the most difficult part for me was the local

> injections at the site that they give to you ... triple ouch.

> Unfortunately, I wasn't available for my doctor's phone call

> yesterday, so will have to wait until after the holiday.

>

> Early in April, I started to feel lousy as if I was fighting a flu

> bug, with on and off fevers, night sweats, no energy whatsoever, and

> pains in my upper stomach. Went to the doctor thinking maybe I had

> some gall bladder problems, and he sent me for an ultrasound and an

> array of blood tests. No gall bladder problem, but my spleen was

> swollen and my liver enzymes were high.

>

> I have been driving myself crazy, probably like everyone else,

> trying to figure out where I got this virus. I had concluded that I

> must have gotten it back in the 70s when I dabbled in drugs ...

> snorting cocaine. In the back of my mind, however, I thought that I

> must have gotten it from my on again, off again male friend of five

> years because he was a former addict, and was never monogamous with

> me when we were together. When I told him I was diagnosed with Hep

> C and suggested that he get tested, he pretty much blew me off

> telling me that he's been tested before and doesn't have it. Then

> he pretty much blew me off. Only to find out recently that he

> followed my advice, got tested, and guess what? He tested

> positive. I had read that only 1 percent of the diagnosis contract

> the disease through sexual contact -- wouldn't you know that that

> would be me!!

>

> I've got a great sense of humor which I think is going to get me

> through whatever happens. I adopted my very first dog from a rescue

> organization a few weeks ago, a five year old Chihuahua, so I had a

> little being to care for and think about rather than dwell on just

> me. She is an absolute love ... but has had her problems too. Last

> week the vet found a tumor on her chest and she had to have a doggy

> mastectomy yesterday, and hopefully it won't be cancerous.

>

> Reading your postings, knowing that there are others going through

> the same things, physically and emotionally, helps a lot. Take care.

>

>

>

[Guest guest]

Hi Jill and welcome to the group. I am so excited you joined. This is an

incredibly wonderful group of folks and many were at the AJAO in Atlanta so you

may have met some of them. You will find a lot of information, understanding

and friends here. Welcome!!

Donna

[Guest guest]

Hi Jill ( & Kendra): Welcome to the group. I see you must have

gotten my email. Sorry it took so long for me to get it to you. I

put all my conference stuff in one pile and there it has sat since

we got home. Life has been pretty crazy for us here.

I'm really glad you joined us and I don't have any answers to your

concerns with regards to Kendra but I am sure you will get some

great advice from many of the wonderful parents that are on this

group.

Please let Kendra know that she has been in my prayers since the

conference. I can only imagine what it must be like to be in

remission and then have this ugly disease come back full force.

Please give her a great big hug from all of us and tell her to try

to keep her chin up. Her fans in Michigan are praying for the meds

to kick in and for her to get back to " normal " .

It was great meeting you at the conference and once again I'm glad

you decided to join all of us here. If you look at the photo album

for this year's conference you may even see some people that you met

in Atlanta. There are quite a few pictures posted.

God Bless and wishing Kendra all the best - Kim & ne (12yrs

jra) Summerhill

>

> Hello everyone!

> I am new to the group, but I have been reading thru many of the

> posts. I was informed about this group at the GA convention.

Thank

> you! Here's a brief history ... My daughter Kendra was diganosed

at

> 18 months with JRA. At about age 6 she went into a drug free

> remission. We where sooo excited!! Around age 8 we found out she

had

> hypermobility in her ankles, and knees. Then this past May at age

10

> her JRA came back full force..

> Since May she has had both knees drained and injected. We've been

put

> on the methotrexate and a week ago the Enbrel injections. We are

> also doing PT. She's struggling with the fact that it has all

come

> back. As are the rest of us! The conference did us all alot of

good

> though. Esp Kendra!! She didn't want to leave!

> I was also wondering how long it will take before we see a

difference

> with the Enbrel. Kendra has it set in her mind that this med will

NOT

> work. She wants us to just let the arthritis run its course. She

> feels that she's fine just the way she is, and doesn't understand

why

> we keep putting her through all the meds when she feels nothing is

> going to work. We also feel she's fine the way she is! I don't

want

> her to think because she's not " perfect " we are trying to make her

> that way. that's NOT the case. we want her feeling better! any

> advice on how to handle this? We have talked

> about what it can do to her body if it's left untreated. But she

> feels if thats her course then that's fine. UGH!! any advice

would

> be greatly appreciated!!

>

[Guest guest]

*Hi- *

Welcome to the group..

I don't know what might help..

I can say a few things. I think that it's hard to understand.. especialy

when the disease goes to sleep.. why does it come back.... and since it

'will/might go away again.. why bother "

She is 10 which I think is a hard age to deal with this disease coming

back... when you feel the need to be like everyone else... so on...

Did the AJAO conference help? Has she been able to attend any camps for kids

with JRA? Or support groups?

Sometimes, I think it comes down to education and understanding the many

times, the best result and the possibility of remission comes from

medications, treatments, etc. These things are necessary to prevent further

problems.

This reminds me of a child we had at camp. She was 8 at the time and had

sysJRA. She was constantly limping because her hips were so bad and had to

often use a wheelchair. She also seemed rather depressed and because I had

seen her many times over the years... she wasnt quite herself.

Because I was part of the rheumatology parent/teen contact, I was able to

call the mom and I just kind of was.. well nosey... haha. The mom told me

that their daughter had been on Embrel and had WONDERFUL results but at the

time, the company couldn't make enough.. and she had go without..... her JRA

slammed her anhd I guess she wasnt expecting it. She went from no pain to

severe pain and debilitation during the wait period.

When she got the medication back... she was a different child.. less

happy.... less compliant. She started to fight them on the injections.... on

PT.. on OT... etc.. etc.....

The parents decided that since she was being so stubborn, they wouldnt take

the family on a trip to Disneyland since the girl needed a wheelchair which

they felt was 'her' issue for not cooperating. I can't imagine the

frustration they were feeling and I guess this was the best way they were

able to cope. Personaly, I did not think it was the best w ay but of course,

I couldnt say that.

Anyways, when seeing her at camp... it made me sad to see how miserable she

was but I knew.... at least in my gut.. that she was very angry b/c she had

felt 'fine' and 'normal' for the first time in her young life and it went

away sooo fast.. that it was hard ti take. I think she was also just

developmentally ahead enough to have tghis reaction a lot sonner than

others.

I talked to our rheumatologist about it who agreed but again.. what to do?

Sometimes... having patient education... understanding WHY treatment is

neccessary is helpful. Other times, if things get to out of hand.... it can

help to see a counselor.. psychologist particularty those that specialize in

working with children/families that have chronic illness, pain issues.

Otherwise, I am not sure what else to say... Hope this helps.

Issadora (28, polyJRA- 5 and FM- 7)

On 8/11/06, kimnbrian2 <kimsumm@...> wrote:

>

> Hi Jill ( & Kendra): Welcome to the group. I see you must have

> gotten my email. Sorry it took so long for me to get it to you. I

> put all my conference stuff in one pile and there it has sat since

> we got home. Life has been pretty crazy for us here.

>

> I'm really glad you joined us and I don't have any answers to your

> concerns with regards to Kendra but I am sure you will get some

> great advice from many of the wonderful parents that are on this

> group.

>

> Please let Kendra know that she has been in my prayers since the

> conference. I can only imagine what it must be like to be in

> remission and then have this ugly disease come back full force.

> Please give her a great big hug from all of us and tell her to try

> to keep her chin up. Her fans in Michigan are praying for the meds

> to kick in and for her to get back to " normal " .

>

> It was great meeting you at the conference and once again I'm glad

> you decided to join all of us here. If you look at the photo album

> for this year's conference you may even see some people that you met

> in Atlanta. There are quite a few pictures posted.

>

> God Bless and wishing Kendra all the best - Kim & ne (12yrs

> jra) Summerhill

>

>

> >

> > Hello everyone!

> > I am new to the group, but I have been reading thru many of the

> > posts. I was informed about this group at the GA convention.

> Thank

> > you! Here's a brief history ... My daughter Kendra was diganosed

> at

> > 18 months with JRA. At about age 6 she went into a drug free

> > remission. We where sooo excited!! Around age 8 we found out she

> had

> > hypermobility in her ankles, and knees. Then this past May at age

> 10

> > her JRA came back full force..

> > Since May she has had both knees drained and injected. We've been

> put

> > on the methotrexate and a week ago the Enbrel injections. We are

> > also doing PT. She's struggling with the fact that it has all

> come

> > back. As are the rest of us! The conference did us all alot of

> good

> > though. Esp Kendra!! She didn't want to leave!

> > I was also wondering how long it will take before we see a

> difference

> > with the Enbrel. Kendra has it set in her mind that this med will

> NOT

> > work. She wants us to just let the arthritis run its course. She

> > feels that she's fine just the way she is, and doesn't understand

> why

> > we keep putting her through all the meds when she feels nothing is

> > going to work. We also feel she's fine the way she is! I don't

> want

> > her to think because she's not " perfect " we are trying to make her

> > that way. that's NOT the case. we want her feeling better! any

> > advice on how to handle this? We have talked

> > about what it can do to her body if it's left untreated. But she

> > feels if thats her course then that's fine. UGH!! any advice

> would

> > be greatly appreciated!!

> >

>

>

>

--

" I am not sick. I am broken. But I am happy as long as I can paint. "

--Frida Kahlo

[Guest guest]

Yes the conference did help her as well as the rest of the family. She loved

it and can't wait to go to PA in 07'. She hadn't been able to go to camp

this yr but she's wanting to look into it for next. We'll have to see.

We're in Indiana and I'm not sure, but I think the closest one is in MI.

We'll check them out!

I think most of her problem is that she knows what it's like to be free of

pain. And now that's all she has. I am hoping she can become an advocate

for JRA in whatever way she can. She knows she wants to help out, just not

sure how right now.

We'll keep educating her on why we are doing what we are doing and hopfully

this will help!

Thanks!

Jill (Kendra 11 as of tomorrow!!) poly

_____

From: [mailto: ] On Behalf

Of Issadora

Sent: Friday, August 11, 2006 9:45 PM

Subject: Re: Re: New to group

*Hi- *

Welcome to the group..

I don't know what might help..

I can say a few things. I think that it's hard to understand.. especialy

when the disease goes to sleep.. why does it come back.... and since it

'will/might go away again.. why bother "

She is 10 which I think is a hard age to deal with this disease coming

back... when you feel the need to be like everyone else... so on...

Did the AJAO conference help? Has she been able to attend any camps for kids

with JRA? Or support groups?

Sometimes, I think it comes down to education and understanding the many

times, the best result and the possibility of remission comes from

medications, treatments, etc. These things are necessary to prevent further

problems.

This reminds me of a child we had at camp. She was 8 at the time and had

sysJRA. She was constantly limping because her hips were so bad and had to

often use a wheelchair. She also seemed rather depressed and because I had

seen her many times over the years... she wasnt quite herself.

Because I was part of the rheumatology parent/teen contact, I was able to

call the mom and I just kind of was.. well nosey... haha. The mom told me

that their daughter had been on Embrel and had WONDERFUL results but at the

time, the company couldn't make enough.. and she had go without..... her JRA

slammed her anhd I guess she wasnt expecting it. She went from no pain to

severe pain and debilitation during the wait period.

When she got the medication back... she was a different child.. less

happy.... less compliant. She started to fight them on the injections.... on

PT.. on OT... etc.. etc.....

The parents decided that since she was being so stubborn, they wouldnt take

the family on a trip to Disneyland since the girl needed a wheelchair which

they felt was 'her' issue for not cooperating. I can't imagine the

frustration they were feeling and I guess this was the best way they were

able to cope. Personaly, I did not think it was the best w ay but of course,

I couldnt say that.

Anyways, when seeing her at camp... it made me sad to see how miserable she

was but I knew.... at least in my gut.. that she was very angry b/c she had

felt 'fine' and 'normal' for the first time in her young life and it went

away sooo fast.. that it was hard ti take. I think she was also just

developmentally ahead enough to have tghis reaction a lot sonner than

others.

I talked to our rheumatologist about it who agreed but again.. what to do?

Sometimes... having patient education... understanding WHY treatment is

neccessary is helpful. Other times, if things get to out of hand.... it can

help to see a counselor.. psychologist particularty those that specialize in

working with children/families that have chronic illness, pain issues.

Otherwise, I am not sure what else to say... Hope this helps.

Issadora (28, polyJRA- 5 and FM- 7)

On 8/11/06, kimnbrian2 <kimsummcomcast (DOT) <mailto:kimsumm%40comcast.net> net>

wrote:

>

> Hi Jill ( & Kendra): Welcome to the group. I see you must have

> gotten my email. Sorry it took so long for me to get it to you. I

> put all my conference stuff in one pile and there it has sat since

> we got home. Life has been pretty crazy for us here.

>

> I'm really glad you joined us and I don't have any answers to your

> concerns with regards to Kendra but I am sure you will get some

> great advice from many of the wonderful parents that are on this

> group.

>

> Please let Kendra know that she has been in my prayers since the

> conference. I can only imagine what it must be like to be in

> remission and then have this ugly disease come back full force.

> Please give her a great big hug from all of us and tell her to try

> to keep her chin up. Her fans in Michigan are praying for the meds

> to kick in and for her to get back to " normal " .

>

> It was great meeting you at the conference and once again I'm glad

> you decided to join all of us here. If you look at the photo album

> for this year's conference you may even see some people that you met

> in Atlanta. There are quite a few pictures posted.

>

> God Bless and wishing Kendra all the best - Kim & ne (12yrs

> jra) Summerhill

>

>

> >

> > Hello everyone!

> > I am new to the group, but I have been reading thru many of the

> > posts. I was informed about this group at the GA convention.

> Thank

> > you! Here's a brief history ... My daughter Kendra was diganosed

> at

> > 18 months with JRA. At about age 6 she went into a drug free

> > remission. We where sooo excited!! Around age 8 we found out she

> had

> > hypermobility in her ankles, and knees. Then this past May at age

> 10

> > her JRA came back full force..

> > Since May she has had both knees drained and injected. We've been

> put

> > on the methotrexate and a week ago the Enbrel injections. We are

> > also doing PT. She's struggling with the fact that it has all

> come

> > back. As are the rest of us! The conference did us all alot of

> good

> > though. Esp Kendra!! She didn't want to leave!

> > I was also wondering how long it will take before we see a

> difference

> > with the Enbrel. Kendra has it set in her mind that this med will

> NOT

> > work. She wants us to just let the arthritis run its course. She

> > feels that she's fine just the way she is, and doesn't understand

> why

> > we keep putting her through all the meds when she feels nothing is

> > going to work. We also feel she's fine the way she is! I don't

> want

> > her to think because she's not " perfect " we are trying to make her

> > that way. that's NOT the case. we want her feeling better! any

> > advice on how to handle this? We have talked

> > about what it can do to her body if it's left untreated. But she

> > feels if thats her course then that's fine. UGH!! any advice

> would

> > be greatly appreciated!!

> >

>

>

>

--

" I am not sick. I am broken. But I am happy as long as I can paint. "

--Frida Kahlo

[Guest guest]

I'll let her know your thinking of her!! Thanks!! Keep in touch!

Jill & Kendra(11 as of tomorrow!!)jra

_____

From: [mailto: ] On Behalf

Of kimnbrian2

Sent: Friday, August 11, 2006 9:29 PM

Subject: Re: New to group

Hi Jill ( & Kendra): Welcome to the group. I see you must have

gotten my email. Sorry it took so long for me to get it to you. I

put all my conference stuff in one pile and there it has sat since

we got home. Life has been pretty crazy for us here.

I'm really glad you joined us and I don't have any answers to your

concerns with regards to Kendra but I am sure you will get some

great advice from many of the wonderful parents that are on this

group.

Please let Kendra know that she has been in my prayers since the

conference. I can only imagine what it must be like to be in

remission and then have this ugly disease come back full force.

Please give her a great big hug from all of us and tell her to try

to keep her chin up. Her fans in Michigan are praying for the meds

to kick in and for her to get back to " normal " .

It was great meeting you at the conference and once again I'm glad

you decided to join all of us here. If you look at the photo album

for this year's conference you may even see some people that you met

in Atlanta. There are quite a few pictures posted.

God Bless and wishing Kendra all the best - Kim & ne (12yrs

jra) Summerhill

>

> Hello everyone!

> I am new to the group, but I have been reading thru many of the

> posts. I was informed about this group at the GA convention.

Thank

> you! Here's a brief history ... My daughter Kendra was diganosed

at

> 18 months with JRA. At about age 6 she went into a drug free

> remission. We where sooo excited!! Around age 8 we found out she

had

> hypermobility in her ankles, and knees. Then this past May at age

10

> her JRA came back full force..

> Since May she has had both knees drained and injected. We've been

put

> on the methotrexate and a week ago the Enbrel injections. We are

> also doing PT. She's struggling with the fact that it has all

come

> back. As are the rest of us! The conference did us all alot of

good

> though. Esp Kendra!! She didn't want to leave!

> I was also wondering how long it will take before we see a

difference

> with the Enbrel. Kendra has it set in her mind that this med will

NOT

> work. She wants us to just let the arthritis run its course. She

> feels that she's fine just the way she is, and doesn't understand

why

> we keep putting her through all the meds when she feels nothing is

> going to work. We also feel she's fine the way she is! I don't

want

> her to think because she's not " perfect " we are trying to make her

> that way. that's NOT the case. we want her feeling better! any

> advice on how to handle this? We have talked

> about what it can do to her body if it's left untreated. But she

> feels if thats her course then that's fine. UGH!! any advice

would

> be greatly appreciated!!

>

[Guest guest]

Thanks Donna!! It was great to see you again at the conference! We hadn't

seen you since the FL or DC conference?? Either way it was a long time ago!

I am glad as well that I joined. I am hoping to have lots of new friends at

the next conference!! Kendra is already saving all the spare change she can

find in the house,laundry, or vehicles. She's putting it in a cookie jar

and marked it for JRA trip!! In the past few weeks she's saved up $50!!

She's also collecting aluminum cans to recycle for extra money. She's

really wanting to get to go to PA.

do you know how soon the AF will have more info on the conference? Like

what hotel? We need to try to make plans for saving up as soon as we know a

ballpark idea of how much it'll cost.

Jill & Kendra(11 tomorrow!!) jra

_____

From: [mailto: ] On Behalf

Of ajaoky@...

Sent: Friday, August 11, 2006 3:40 PM

Subject: Re: New to group

Hi Jill and welcome to the group. I am so excited you joined. This is an

incredibly wonderful group of folks and many were at the AJAO in Atlanta so

you

may have met some of them. You will find a lot of information, understanding

and friends here. Welcome!!

Donna

[Guest guest]

, you can't drop all the other oils completely; you still

need some EPA and DHA, the omega-3 oils (not the supposedly

beneficial LNA), and LA, an omega-6 oil, in balance with each

other.

Duncan

>

> Posted by: " zulie_60 " zulie_60@... zulie_60

> Date: Sat Aug 12, 2006 1:00 pm (PDT)

>

> Hi,

>

> Just finding out about the benefits of coconut oil, mostly via another

> gruop, i.e., candida. Curious to know the common wisdom

> regarding how much to have daily and what other sorts of dietary

> changes are recommended (if any) to get the maximum benefits. For

> example, does one need to balance it will other types of oils? Can

> one eat primarily coconut oil and stop all other kinds of fats, or is

> that not recommended?

>

> Thanks,

>

>

[Guest guest]

Adding Coconut oil to diet is wonderful. But it does not mean you

have to give up every other oil. I find cooking with coconut oil

great. Adding to cereals and pasta etc is wonderful. But I still

have other oils that I can use.

I found getting a whole coconut great also. The coconut milk is

wonderful. I enjoy the chunks of coconut and so does my dog. Nice

treat. I can chop it up to put on salads and us olive oil and

balsamic vinegar for the dressing.

I also am into essential oils and use olive oil as a carrier oil.

Yesterday when I made up a couple of blends for my self. I used a

combination of olive and coconut oil once blended with the essential

and olive oils at room temperature it stays a liquid which is good

for using as massage oil.

Interesting where you brain can take you with the oils.

God bless oilhugs .

-- In Coconut Oil , Duncan Crow

<duncancrow@...> wrote:

>

> , you can't drop all the other oils completely; you still

> need some EPA and DHA, the omega-3 oils (not the supposedly

> beneficial LNA), and LA, an omega-6 oil, in balance with each

> other.

>

> Duncan

>

> >

> > Posted by: " zulie_60 " zulie_60@... zulie_60

> > Date: Sat Aug 12, 2006 1:00 pm (PDT)

> >

> > Hi,

> >

> > Just finding out about the benefits of coconut oil, mostly via

another

> > gruop, i.e., candida. Curious to know the common wisdom

> > regarding how much to have daily and what other sorts of dietary

> > changes are recommended (if any) to get the maximum benefits. For

> > example, does one need to balance it will other types of oils?

Can

> > one eat primarily coconut oil and stop all other kinds of fats,

or is

> > that not recommended?

> >

> > Thanks,

> >

> >

>

[Guest guest]

Thank you so much, Duncan. Still little confused, however. Do I get a

supplement, i.e., omega-3, fish oil, or something like that? Feel a naive about

it all. Was " turned on " to coconut via a candida group, but there are all

sorts of other dietary restrictions with that I'm not sure I need. They

suggested butter and coconut oil for eating/cooking. And then I think a fish

oil and/or castor oil supplement. Is there some piece of literature (succinct,

please!) you could direct me to that might be easier for me to figure this out.

Duncan Crow <duncancrow@...> wrote:

, you can't drop all the other oils completely; you still

need some EPA and DHA, the omega-3 oils (not the supposedly

beneficial LNA), and LA, an omega-6 oil, in balance with each

other.

Duncan

>

> Posted by: " zulie_60 " zulie_60@... zulie_60

> Date: Sat Aug 12, 2006 1:00 pm (PDT)

>

> Hi,

>

> Just finding out about the benefits of coconut oil, mostly via another

> gruop, i.e., candida. Curious to know the common wisdom

> regarding how much to have daily and what other sorts of dietary

> changes are recommended (if any) to get the maximum benefits. For

> example, does one need to balance it will other types of oils? Can

> one eat primarily coconut oil and stop all other kinds of fats, or is

> that not recommended?

>

> Thanks,

>

>

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

Hi there,My FAVORITE site is: wildernessfamilynaturals.com . I go there and

read for hours on end!! If you want more info. on fats and oils that are GOOD

for you, they have several books available for sale on their site as well. My

next favoritesite is tropicaltraditions.com. Check these out if you wish. lots

of GOOD info.Happy reading!G.Hanna , you can't drop all

the other oils completely; you still need some EPA and DHA, the omega-3 oils

(not the supposedly beneficial LNA), and LA, an omega-6 oil, in balance with

each other.Duncan & gt; & gt; Posted by: " zulie_60 " zulie_60@... zulie_60 & gt;

Date: Sat Aug 12, 2006 1:00 pm (PDT) & gt; & gt; Hi, & gt; & gt; Just finding out

about the benefits of coconut oil, mostly via another & gt;

gruop, i.e., candida. Curious to know the common wisdom & gt; regarding how much

to have daily and what other sorts of dietary & gt; changes are recommended (if

any) to get the maximum benefits. For & gt; example, does one need to balance it

will other types of oils? Can & gt; one eat primarily coconut oil and stop all

other kinds of fats, or is & gt; that not recommended? & gt; & gt; Thanks, & gt;

& gt; --------------------------------- Messenger with Voice. Make

PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.[Non-text

portions of this message have been removed]

_______________________________________________

Join Excite! - http://www.excite.com

The most personalized portal on the Web!

[Guest guest]

Hey Jill, I believe it is usually around March when all the details are

released. You will get info in the mail since you were there this year.

Donna

[Guest guest]

Ok thanks again!!

Hope you are feeling better! I read your latest scare!! UGH!!

I will be thinking of you and sending you well wishes!!

Jill & Kendra

_____

From: [mailto: ] On Behalf

Of ajaoky@...

Sent: Tuesday, August 15, 2006 1:10 PM

Subject: Re: New to group

Hey Jill, I believe it is usually around March when all the details are

released. You will get info in the mail since you were there this year.

Donna

[Guest guest]

I'm glad to hear that you're preparing for a transplant. Keep us all posted on

how it goes. And here's to a speedy recovery. I know that you & your family will

benefit greatly from this. I'll include you in my prayers.

[ ] New to Group

Hi all!

My name is Beki. I live in the San Diego area. I am married with

one 9 year old daughter.

I have been visiting with the transplant team at UCSD for several

months now. I think I've been tested for anything and everything!

On Tuesday, my file goes before the committee to determine whether I

will be placed on the transplant list. I have my follow up

appointment on October 12th. ly, I'm a jumble of nerves. My

current MELD score is 14. It was 17 three months ago and 28 five

months ago.

I have had AIH since 1985. In late February '06, I had my most

recent flare up. It was, by far, the worst. In March '06 I had a

gastric bleedout with varices and ulcers. I needed 4 units of blood

to replace some of my losses. In April '06, I developed a bloodclot

in my splenic vein. It's been a long road on this one, but at least

I'm back to work full-time now. Hurray!

I suffer from splenomegaly (about 2,000 cubic cm). My red and white

cell counts are low. My platelets are 33. I suffer from ascites,

but have been fortunate enough to control it with diuretics for the

most part. I haven't been tapped because of the low platelet count.

Anyway, that's me in a nutshell. It's really great having found this

forum. I look forward to interacting with you all.

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

No virus found in this incoming message.

Checked by AVG Free Edition.

Version: 7.1.407 / Virus Database: 268.12.9/458 - Release Date: 9/27/2006

[Guest guest]

Thanks .

>

> I'm glad to hear that you're preparing for a transplant. Keep us

all posted on how it goes. And here's to a speedy recovery. I know

that you & your family will benefit greatly from this. I'll include

you in my prayers.

> [ ] New to Group

>

>

> Hi all!

>

> My name is Beki. I live in the San Diego area. I am married with

> one 9 year old daughter.

>

> I have been visiting with the transplant team at UCSD for

several

> months now. I think I've been tested for anything and

everything!

> On Tuesday, my file goes before the committee to determine

whether I

> will be placed on the transplant list. I have my follow up

> appointment on October 12th. ly, I'm a jumble of nerves. My

> current MELD score is 14. It was 17 three months ago and 28 five

> months ago.

>

> I have had AIH since 1985. In late February '06, I had my most

> recent flare up. It was, by far, the worst. In March '06 I had a

> gastric bleedout with varices and ulcers. I needed 4 units of

blood

> to replace some of my losses. In April '06, I developed a

bloodclot

> in my splenic vein. It's been a long road on this one, but at

least

> I'm back to work full-time now. Hurray!

>

> I suffer from splenomegaly (about 2,000 cubic cm). My red and

white

> cell counts are low. My platelets are 33. I suffer from ascites,

> but have been fortunate enough to control it with diuretics for

the

> most part. I haven't been tapped because of the low platelet

count.

>

> Anyway, that's me in a nutshell. It's really great having found

this

> forum. I look forward to interacting with you all.

>

>

>

>

>

>

> -------------------------------------------------------------------

-----------

>

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.407 / Virus Database: 268.12.9/458 - Release Date:

9/27/2006

>

>

>

[Guest guest]

Good luck with transplant team determination. You sound like you have

been following your condition with care, and that is wonderful and

very necessary. When you will be accepted for a liver transplant, is

the actual transplant recommended for the near future?? NO wonder you

are stressed!!

This group is great, we will keep track of you and certainly include

in in any and all possitive energy. Welcome to the group. Clara from OR.

> > Hi all!

> >

> > My name is Beki. I live in the San Diego area. I am married with

> > one 9 year old daughter.

> >

> > I have been visiting with the transplant team at UCSD for

> several

> > months now. I think I've been tested for anything and

> everything!

[Guest guest]

,

I am in the St. Louis area and was diagnosed in 1997. I was put on

prednisone and Imuran and my doc tried to wean me off both. I was off both for

a few

months and relapsed. So then had to go back on prednisone and Imuran again.

The next time he weaned me off prednisone and it was a success! I was in

remission for 8 years. I have now had another relapse and went back on the

prednisone. Just a month ago I weaned off the prednisone again and my enzymes

are

normal still. So we are encouraged that I will have another good run. I think

it

is okay that your doc tried to get your off both. At least now you know that

you need some kind of immunosuppressant. Maybe now you can eventually get

off the prednisone entirely and the Imuran will hold your disease in check.

Don't take on the feeling that you did something wrong. This disease has a path

of its own and we control what we can control. The best we can do is manage

it. And take heart, it can be managed.

Roxanne

[Guest guest]

;

I know that it's hard to go through this with young children. I have a rough

time when

keeping my grandchildren (just not enough energy). The older ones have

memories of grandma teaching them dances & songs. We used to have so much fun.

Now, the younger ones see a grandma with low energy level who will watch DVDs or

color with

tem. My granddaughter tells people " my grandma is sick everyday. " It makes me

so sad. I think that we shoud all hope for better things in 2007. Hang in there

All most of us can do is hope & pray that our turn comes for a transplant & a

little normalcy in our lives

Also from MO

mlmmoma <mlhydefam@...> wrote:

Hi

I've never been in an on-line support group so this is all new to me.

I had a biopsy right before Christmas 2004. Was diagnosed with AIH in

Jan. of 2005 and started taking Prednisone and Immuran Jan. of 2005.I

gained weight, got Acne and felt terrible until we got my doseage

decreased over the next year or so. I was completely off meds. in

March of 2006. However I went in for my routine blood work last month

and found out I had relapsed. Beside's feeling tired I had no symptoms.

Now I back on Prednisone and Immuran at full doseage again. The past

few weeks have been terrible with all the side-effects and I wonder if

my doctor should have taken me off the Immuran at all. I feel like

somehow it's my fault that I relapsed and hate to be a burden on my

husband. We have 3 small children and the side-effects make it really

hard to function.

Just needed to vent.

Missouri

[Guest guest]

hi...

worry won't help at all. reading up will.

there are many individual variables...you must judge for you.

it's best if you study up around the net. look in the groups homepage

of this group for links, files area for some basic info, & there you can

search past message archives by keywords. as your understanding grows so

will your questions. people come & go here, some are around for years.

much of the best info, or at least best written presentations of it, are in

theh archives & shoulddn't need re-typing for every newbie. you have work

to do for sure.

treatment options from big medidcine are limited & usually have varying

success rates, depending on the genotype you have (you'll need a liver

biopsy to find yours), recurrence rates are high, treatment side effects can

vary from mildly annoying/temporary to miserable sometimes mermanent

damage. there is no real cure at this time. many individual

variables...some people clear the virus by the strength of their own immune

system and attitudes are an important part of that.

the disease is quite manageable without conventional treatments drugs. most

people who live healthy lifestyles can look forward to dying of something

else before the HCV complications get them directly. alt med modalities

offer much in the way of cleansing, immune system support, help in

regenerating the liver itself, through a variety of herbs, supplements, &

procedures.

personally, i've gone from being pretty sick with symptoms (almost

preventing me from supporting myself by working my trade) a few months ago

to being symptom free by use of colloidal silver & good organic food. i

intend to avoid current drug treatments using alt meds until something more

effective & worthwhile comes along.

study, & you won't like a lot of what you find but the truth is important to

intelligent decision making, & you must be in charge of your health.

putting yourself in total trust of conventional docs can range from good

result to disastrous. be careful what you believe from any side of things.

this is a slow growing virus, so most people don't have to be frantically

floundering about without taking time for well informed decisions.

forget alcohol altogether immediately, & go from there.

welcome aboard, count your blessings, & be patient ...

cheers,

bobL

myspace: http://www.myspace.com/bob021147

ebay: http://stores.ebay.com/bobLs-fine-flotsam

homepage: http://www.toad.net/~blarson/

> New to group

>

>

> I was just told yesterday that I tested positive for Hepatitis C. My

> doctor told me not to worry, that I have to have further blood work.

> I am worried. Is this something that is really treatable, could I

> become seriously ill, and what are the chances of giving it to others?

> Thanks.

> Gracey

>

>

>

>

>

>

[Guest guest]

>

> I was just told yesterday that I tested positive for Hepatitis C. My

> doctor told me not to worry, that I have to have further blood work.

> I am worried. Is this something that is really treatable, could I

> become seriously ill, and what are the chances of giving it to others?

> Thanks.

> Gracey

>

i was in your shoes in 2001 and was of treatment and am now cleared of

the virus and yes it is treatable!!!and your doctor is proably checking

your viral load to see how high it is !!!and if you caught it

early..and if you did you can clear it like i did!!and if you did you

do not have to worry to much!and he is checking your liver emzyns! like

your alt,and als then you will need a biopsy done it won't take that

long to do.and they will numb the area for it.and for your last

question yes you can give it to some one if you share

needles,razors,tooth brushes,and sex! so if you have sex use protection

please..i will keep you in my prays and may god bless you!!

[Guest guest]

I am better at last at first i was so sick looking for a place to die

i went to mississsippi and i was throwing up blood dieing i got

better down there and i am not planning treatment just alt. ways are

you making your own silver my last blood test was to good to treatment

so no treatment my blood is getting better how are you doing mentaly

with all this hepper stuff Jim see you bob

>

> hi...

>

> worry won't help at all. reading up will.

> there are many individual variables...you must judge for you.

> it's best if you study up around the net. look in the groups

homepage

> of this group for links, files area for some basic info, & there you can

> search past message archives by keywords. as your understanding

grows so

> will your questions. people come & go here, some are around for years.

> much of the best info, or at least best written presentations of it,

are in

> theh archives & shoulddn't need re-typing for every newbie. you

have work

> to do for sure.

> treatment options from big medidcine are limited & usually have varying

> success rates, depending on the genotype you have (you'll need a liver

> biopsy to find yours), recurrence rates are high, treatment side

effects can

> vary from mildly annoying/temporary to miserable sometimes mermanent

> damage. there is no real cure at this time. many individual

> variables...some people clear the virus by the strength of their own

immune

> system and attitudes are an important part of that.

> the disease is quite manageable without conventional treatments

drugs. most

> people who live healthy lifestyles can look forward to dying of

something

> else before the HCV complications get them directly. alt med modalities

> offer much in the way of cleansing, immune system support, help in

> regenerating the liver itself, through a variety of herbs,

supplements, &

> procedures.

>

> personally, i've gone from being pretty sick with symptoms (almost

> preventing me from supporting myself by working my trade) a few

months ago

> to being symptom free by use of colloidal silver & good organic food. i

> intend to avoid current drug treatments using alt meds until

something more

> effective & worthwhile comes along.

>

> study, & you won't like a lot of what you find but the truth is

important to

> intelligent decision making, & you must be in charge of your health.

> putting yourself in total trust of conventional docs can range from good

> result to disastrous. be careful what you believe from any side of

things.

> this is a slow growing virus, so most people don't have to be

frantically

> floundering about without taking time for well informed decisions.

>

> forget alcohol altogether immediately, & go from there.

> welcome aboard, count your blessings, & be patient ...

> cheers,

> bobL

>

> myspace: http://www.myspace.com/bob021147

> ebay: http://stores.ebay.com/bobLs-fine-flotsam

> homepage: http://www.toad.net/~blarson/

>

> > New to group

> >

> >

> > I was just told yesterday that I tested positive for Hepatitis C. My

> > doctor told me not to worry, that I have to have further blood work.

> > I am worried. Is this something that is really treatable, could I

> > become seriously ill, and what are the chances of giving it to others?

> > Thanks.

> > Gracey

> >

> >

> >

> >

> >

> >

[Guest guest]

hi Jim...have been thiking about you sometimes since you seemed overdue

after getting back west.

good to hear you're doing lots better.

what's with the throwing up blood? that doesn't go with the usual HCV

symptoms that i recall. must've been a super bummer.

couldn't afford the silver any other way than to make it myself. i have the

" usual problem " with it now: keeping up with others who want me to make it

for them...my machine is always on, & running out of distilled water. i'm

doing fine with the HCV...no symptoms at all except a bit of pink speckling

on the tops of feet, so i guess the cryoglobunemia (sp?) is still

there...feet still don't feel quite their old selves...radically improved

though... don't ache miserably all the time like they did, & i still sit at

my desk all the time when i'm not at work which means most of the time at

the desk. no liver area ache, energy back like a couple decades ago. i'm

still not using any vitamins or other supplements, or anything else besides

the silver & good organic food, no junk. i'm going to get into a whole

bunch of alt med attacks from all sides when money picks up around here.

& the last bit of toenail fungus is leaving, all nails but the worst one

like a newborn babe. the worst one still has 1/4 " at the end all funky, but

the rest is grown out new & pretty. my hair is getting darker, as in going

from dark brown to black. beard still mostly salt w/ a bit of pepper. iris

of eyes more evenly blue than i ever remember them.

as an aquarian you might appreciate looking into the low voltage electric

currents in conjunction with the silver. i've been reading about it for

awhile & just got a 6v battery to make my first simple godzilla with. i

have a sponge, some wire, and cotterpins to make the rest, so will be doing

that. the results people are reporting for all kinds of things are really

amazing. i'm going to make both the simplest electrodes (to use across

wrist artery) and the gloves first, since they're the most versatile. will

try using the gloves in front & back of the liver area to current through

the whole liver.

/

2/

my landlord just had a major sinus infection; others around here are passing

around some nasty bug, & she travels around to strangers' homes looking at

jobs to bid, & i got her using the silver but was disappointed and surprised

with the lack of results. it helped some for awhile. when she got to a doc

& some antibiotics all was well soon. i've been on the verge of it getting

me too, kinda sniffly where i've been used to clear passages since starting

the silver, which surprised me because i feel like superman. i read on the

net today something about where the silver actually failed to kill a couple

different kinds of bacteria in a petri dish culture. this is the first

negative result i've found. the writer suggested that it doesn't mean it's

not effective against other stuff like virus & fungus, which i'm glad he

mentioned since it's working for me & it would be a real mind blower to

think i might've got such dramatically good results by a placebo effect... i

have found a claim that bacteria can in fact adapt to become resistant to

silver so it appears maybe there's some holes in the hype about the silver

killing everything & the bugs can't adapt. that being the case, it's gotta

be a good idea to launch a comprehensive super attack including herbs,

supplements, etc etc, all at once to kill'em good so they don't hang around

to mutate.

gotta plug in a guitar for awhile...feeling more like it again these days,

but can't afford the time much.

hey, how about looking around to see if you can find those misplaced comma &

period keys??? ;-)

cheers,

bobL

myspace: http://www.myspace.com/bob021147

ebay: http://stores.ebay.com/bobLs-fine-flotsam

homepage: http://www.toad.net/~blarson/

> New to group

> > >

> > >

> > > I was just told yesterday that I tested positive for Hepatitis C. My

> > > doctor told me not to worry, that I have to have further blood work.

> > > I am worried. Is this something that is really treatable, could I

> > > become seriously ill, and what are the chances of giving it to others?

> > > Thanks.

> > > Gracey

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Bob:

I am somewhat surprised that you are not aware of the reasons for a

Hep C infected person to be throwing up blood.

First, just to let you know that I am appreciative of your knowledge

and willingness to share it, and of the amount of time and energy that

it has taken to gather much of it, I applaud you. Thank you.

Now, as for the reasons for bloody sputum, blood regurgitation, etc.:

it is due to variceals (which are hemmoroidal-like outpocketings of

veins in the esophagus.) Many people, particularly those who have

progressed to chirrosis, have portal vein hypertension (as well as

enlarged spleens, low platelet counts, etc.)

Since the esophagus' drainage system shares the same tract as the

liver, through a bifurcation, the portal vein hypertension (the

hepatic-portal vein, that is) causes the esophageal veins to suffer

from poor drainage. This causes them to swell and develop the

hemmoroidal features.

These can and do rupture just as in the bleeding out of a duodenal

ulcer. Hepatologists are usually very concerned when a patient

presents with Hep C progressed to chirrosis as they rightly should be.

But, one of the reasons for concern is that they will or may suffer a

bleed-out.

Much effort is directed at forestalling the first bleed-out as it is

the precursor to more and more frequent bleed-outs, usually. There are

treatments if this is a known/diagnosed condition. These treatments

are both or either surgical or medicinal.

Most hepatologists will call for an EGD (I am trying to remember if

that is correct or if it's an EDG.) It means an Endoscopic Gastric

Duodenoscopy. They can then visualize the variceals (or varices in

plural.) They can also assess the likelihood of a first bleed-out and

determine what, if any, treatment measures are called for.

It is possible that your friend has this condition. It is most

important that he consult with a gastroenterologist or with a

hepatologist in order to determine if there is a problem which can be

treated.

In the meantime, he should monitor his stool color. Too dark will

indicate that he has blood in his stool. A simple stool check by a lab

will help to determine if this is so. He can then, depending on the

results, either seek help with this or not. He should get himself to a

doctor immediately if he continues to throw-up blood.

Again, I do appreciate your sharing the knowledge that you have gained

in your quest for information on combating this scourge. I hope that I

have added to your information.

I, myself, have progressed to chirrosis and will begin treatment using

conventional therapies this coming month. I have 1a and my viral load

is uncountable as it is higher than the labs can count. I believe they

said it was higher than 100 million. I've never had a biopsy but the

previous abdominal CAT scan showed them all that they needed to know

to decide to go ahead with treatment.

Over the next year, I'll report on my results. I'm not looking forward

to this, but I was assured that, without it I might experience 5 or so

more years of life and that half of them would not be to my liking.

Good luck with your own wait. I, too, wish that there were some other

way to treat this monster.

[Guest guest]

thanks for he great post ! truly awesome. i didn't know any of that.

actually, i might have read some of it before but i have serious CRS

syndrome more recently combined with input overload. i'm keeping a bit more

together since i quit smoking those too pleasant herbs.

i'll be re-reading this one more than a couple times.

geez, you're in a tough spot, but at least going into treatment knowing what

you're doing.

i had the displeasure of watching a friend willfully kill himself with cheap

wine over the course of a little over a year. the cirhossis death is not a

pleasant one, especially as a suicide mode. i often wonder what kind of, if

any, intervention might have helped him.

have you ever looked into the CSilver?

i'll be getting fresh labs soon. i hope counts are consistent with the way

i'm feeling. last time, a couple years ago, i showed low platelets with

nothing to account for them, however enzymes & viral load weren't super

high, improved over two years previous when i was first diagnosed. because

of the platelets they suggested HIV testing which i declined. i figured i

treat my blood as toxic already, so communicability measures are already

taken care of, and apart from that i just didn't want to know. if i picked

it up it was from passing pipes/bongs with a " friend " at a time when we both

had bleeding dental issues. he turned out to be a closet bisexual (a crack

whore even) much to the suprise of his old friends of many years, and knew

he had it when he might've passed to me. a real two-faced irresponsible POS

sorry excuse for a human being... he's now dead, apparently murdered while

living as an outcast on the streets & had gone quite psycho. so i guess

i'll take the test soon, & if needbe start experimenting on myself for that

too.

cheers,

bobL

myspace: http://www.myspace.com/bob021147

ebay: http://stores.ebay.com/bobLs-fine-flotsam

homepage: http://www.toad.net/~blarson/

> Re: New to group

>

>

> Bob:

>

> I am somewhat surprised that you are not aware of the reasons for a

> Hep C infected person to be throwing up blood.

>

> First, just to let you know that I am appreciative of your knowledge

> and willingness to share it, and of the amount of time and energy that

> it has taken to gather much of it, I applaud you. Thank you.

>

> Now, as for the reasons for bloody sputum, blood regurgitation, etc.:

> it is due to variceals (which are hemmoroidal-like outpocketings of

> veins in the esophagus.) Many people, particularly those who have

> progressed to chirrosis, have portal vein hypertension (as well as

> enlarged spleens, low platelet counts, etc.)

>

> Since the esophagus' drainage system shares the same tract as the

> liver, through a bifurcation, the portal vein hypertension (the

> hepatic-portal vein, that is) causes the esophageal veins to suffer

> from poor drainage. This causes them to swell and develop the

> hemmoroidal features.

>

> These can and do rupture just as in the bleeding out of a duodenal

> ulcer. Hepatologists are usually very concerned when a patient

> presents with Hep C progressed to chirrosis as they rightly should be.

> But, one of the reasons for concern is that they will or may suffer a

> bleed-out.

>

> Much effort is directed at forestalling the first bleed-out as it is

> the precursor to more and more frequent bleed-outs, usually. There are

> treatments if this is a known/diagnosed condition. These treatments

> are both or either surgical or medicinal.

>

> Most hepatologists will call for an EGD (I am trying to remember if

> that is correct or if it's an EDG.) It means an Endoscopic Gastric

> Duodenoscopy. They can then visualize the variceals (or varices in

> plural.) They can also assess the likelihood of a first bleed-out and

> determine what, if any, treatment measures are called for.

>

> It is possible that your friend has this condition. It is most

> important that he consult with a gastroenterologist or with a

> hepatologist in order to determine if there is a problem which can be

> treated.

>

> In the meantime, he should monitor his stool color. Too dark will

> indicate that he has blood in his stool. A simple stool check by a lab

> will help to determine if this is so. He can then, depending on the

> results, either seek help with this or not. He should get himself to a

> doctor immediately if he continues to throw-up blood.

>

> Again, I do appreciate your sharing the knowledge that you have gained

> in your quest for information on combating this scourge. I hope that I

> have added to your information.

>

> I, myself, have progressed to chirrosis and will begin treatment using

> conventional therapies this coming month. I have 1a and my viral load

> is uncountable as it is higher than the labs can count. I believe they

> said it was higher than 100 million. I've never had a biopsy but the

> previous abdominal CAT scan showed them all that they needed to know

> to decide to go ahead with treatment.

>

> Over the next year, I'll report on my results. I'm not looking forward

> to this, but I was assured that, without it I might experience 5 or so

> more years of life and that half of them would not be to my liking.

>

> Good luck with your own wait. I, too, wish that there were some other

> way to treat this monster.

>

>

>

>

>

>

>

>

>

[Guest guest]

You are so welcome to this group, Jra can start very young or much older as did

yours. It was very scary for us. I just posted that after 2 years with no flare

in her eye she is now having suspicious fleck in her left eye we go back to the

Rheumatologist in a few weeks. Sickness for my child is common. Doing better

this year but I cant cross my fingers yet. But we are knocking on wood. Aubrey

is very private about her JRA. She just told two girls at church so this was so

huge for her. I would love to continue to hear from you on the board. You are so

welcome to come here. It will get you through some hard times.......Terri and

Aubrey.....

new to group

hi everyone,

I am new to the group, and not even sure if we 'qualify' for this group...I

thought it was for JA but another message said JRA...we don't have a definitive

diagnosis yet...

My daughter is 16. She has always been extremely active and athletic, and also

always had pain....from her feet waking her in the night as a toddler to

numerous bouts of tendonitis in knees and shoulders throughout grade school to

high school...but pushed through the pain with lots of advil because her sports

defined her. She has always had chronic respiratory infections as well.

About two years ago, she began getting sicker...mono and more respiratory

infections. Six months later, she received her first diagnosis...CVID, a primary

immune deficiency. She played most of her water polo season last year but became

progressively more ill, and she began infusions January - we thought she would

now start to improve. Early Feb, she came down with viral meningitis. Since that

time, she has had chronic daily migraines and leg pain that never ceases.

Spinal CT was done to rule out lesions. In May saw peds rheumo at UCLA. CRP

and ANA both positive; dr not sure if after effects of meningitis. Noticed

rigidity in distal finger joints and signs of past inflammation. My daugther was

having a bad flare of bursitis in her hip. Dr put her on anaprox. July, her

blood work was okay, although her pain was no better. In Aug, stomach was so

bad, dr removed her from Anaprox...She also joined a ped pain mgmt program at

UCLA at this time, but it has not helped either. Sept when hospitalized for IV

treatment, had vasculitis...October tests CRP and ANA were high again so rheumo

started Mobic. In Nov, the ENT took her off all anti-inflammatory meds in prep

for surgery...my daughter did not think Mobic was helping her at all until she

stopped it...her hips and knees were excruciating over Thanksgiving. Surgery

postponed...medically unstable...

Saw rheumo a few days ago. Daughter's left knee was swollen..although her

joints aren't often visibly swollen. Dr says definitely arthritis...not certain

what kind...tested RF but no results yet. If I understand correctly, her IVIG

infusions make the diagnosis more difficult.

It has been a long, frustrating year...my daughter has missed almost two

semesters of school now...we just finally got an IEP for her...one more

battle...she wants more than anything to have less pain, to return to school,

and to play water polo her senior year....

Whether we belong in this group or not, thanks for listening...

mom to , 16, arthritis, CVID, migraines

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

Access over 1 million songs - Music Unlimited.