Re: (unknown)

May 14, 2003

- Do you suppose it's all in my head

> or can Remicade work without MTX?

>

> Sue

Hi Sue,

I like Remicade too. Only thing that has completely cleared my skin

in almost 30 years! As I understand it:Remicade can work withoutMTX

just fine. The concern is that since it is derived from mice(no

wonder my cat has started nipping me) just kidding! our bodies

naturally build up immunity to it by making antibodies that fight the

Remicade. It is hoped that MTX will supress those antibodies and the

remicade will continue to be effective. .Ron,.....help

me out if I am wrong with this info.

Glad the Remicade helps!

Marti

May 15, 2003

Hi Marti,

Thanks for the info. I have tried taking MTX and got very ill so my doc

took me off. This was way before I started Remicade. I wonder if I should

try again.

Sue

>From: " snowbound22003 " <mlw402@...>

>Reply-

>

>Subject: [ ] Re: (unknown)

>Date: Thu, 15 May 2003 02:28:28 -0000

>

_________________________________________________________________

STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

http://join.msn.com/?page=features/junkmail

May 15, 2003

Hi Janet,

Funny you should ask. When my Rheumy was giving me the choice of which

(Remicade or Enbrel) to begin, we sent both into my insurance company and

decided we would use whichever they approved first. They only approved me

for five treatments of Remicade and I have had four. I am thinking of

switching to Enbrel after my last treatment if my insurance company will

approve it. Do you have experience with Enbrel?

Sue

>From: fam24@...

>Reply-

>

>Subject: Re: [ ] (unknown)

>Date: Wed, 14 May 2003 21:48:48 EDT

>

_________________________________________________________________

The new MSN 8: smart spam protection and 2 months FREE*

http://join.msn.com/?page=features/junkmail

May 15, 2003

> Hi Marti,

>

> Thanks for the info. I have tried taking MTX and got very ill so

my doc

> took me off. This was way before I started Remicade. I wonder if

I should

> try again.

>

> Sue

>

> Hi Sue,

>

> >

> Mtx makes me sick too. Rheumies recommended other options that

might have the same effect of supressing the antibodies such as

Imuran and Arava. I believe Ron used Arava. Or, another option is to

just take the Remicade and try switching to Enbrel or Humira if it

becomes ineffective for you. If you are considering switching to

Enbrel anyway...I personally wouldn't put myself through getting sick

from the MTX. Lots of choices and hard decisions for all of us with

these strong meds.

Best Wishes!

Marti

> _________________________________________________________________

> STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

> http://join.msn.com/?page=features/junkmail

>

May 15, 2003

I would have a letter ready that requests PWN (prior written notice), and let

them know you have it and will be finalizing it and sending it (or hand

delivering it with receipt) immediately after the meeting. Just knowing you

know about PWN might change their minds. If not, you have nothing to lose by

letting them know ahead of time that your letter is ready to go.

Just my opinion.

Sandy, Illinois (alpy2@...)

May 18, 2003

How come you can't travel more than 4 hours away from the hospital?

Debby

RE: [ ] (unknown)

, Interesting that you say, since the Dr. told you not to have a drink, younow want one someone else (Joan??) said the same thing. I think ourcommonality may be tenacity or stubbornness. I have been restricted totravel more than 4 hours from the transplant center and of course I now wantto go all kinds of places. Seriously, sounds like you responded to the prednisone well. I can't commenton the Imuran, I couldn't tolerate it. Someone will pop in with thestatistics, I don't know. I do however doubt you are the only one in yourarea, I have never heard however of enough people in a certain area havingit to form a support group, but, hey, you now have us! Welcome,Patty [AIH 1980 - TX 1997 - relisted 2003]-----Original Message-----From: NoceraDesigns@... [mailto:NoceraDesigns@...] Sent: Sunday, May 18, 2003 8:33 AM Subject: [ ] (unknown)Hi to everyone! I am new to this group and not sure if I am doing thisright. I have AIH. My Mom died from this disease in the December of 2000.(She did not know she had this) I went to the doctors because I quitsmoking a few months after my mom's passing. I thought my thyroid medicationneeded to be ajusted. My doctor did a liver panel because of what happen tomy mom and when the test came back my liver # were very high(10 X higherthan my mom's) After months of different test and ton's of blood work Ibecame very ill. Liver biospy confirmed the AIH. I was pretty sick for along time. They put me on 60mg of predisone and eventually I accepted theimmuran. I'm off the predisone and just take the 100mg immuran. My livernumbers have been good now for almost a year. Does anyone get nausea fromthe immuran? I have alot of body aches but not like when I was really ill.I am sure all that is from the arthitis. I have started seeing ahepatoligist and I still have the care from my regular doctor. Most days Idon't feel really good. I would like my energy level to be better. After Igot better I did start smoking again when my husband and I separated. I knowI have to quit! I don't drink. I never drank much before but now that thedoctors say no drinking I want a drink! Anyway I hope I'm doing this right.Everyone have a good day. I have to get ready for work. I'm happy that Ifound this support group. It's a little over whelming with all the e-mailsto read, but I'll get the hang of it! Does anyone know the statitics forhow many people have this illness? I pretty much doubt there is anyone frommy area who has AIH. There are no liver support groups of any kind aroundhere. Haveto go! -NH

May 18, 2003

Debby

Because when a donor liver becomes available I need to be able to get there in 4 hours or they call the next person on the list. They don't want to waste the liver.

Patty

-----Original Message-----From: tdcc [mailto:tdcc2000@...] Sent: Sunday, May 18, 2003 5:22 PM Subject: Re: [ ] (unknown)

How come you can't travel more than 4 hours away from the hospital?

Debby

RE: [ ] (unknown)

, Interesting that you say, since the Dr. told you not to have a drink, younow want one someone else (Joan??) said the same thing. I think ourcommonality may be tenacity or stubbornness. I have been restricted totravel more than 4 hours from the transplant center and of course I now wantto go all kinds of places. Seriously, sounds like you responded to the prednisone well. I can't commenton the Imuran, I couldn't tolerate it. Someone will pop in with thestatistics, I don't know. I do however doubt you are the only one in yourarea, I have never heard however of enough people in a certain area havingit to form a support group, but, hey, you now have us! Welcome,Patty [AIH 1980 - TX 1997 - relisted 2003]-----Original Message-----From: NoceraDesigns@... [mailto:NoceraDesigns@...] Sent: Sunday, May 18, 2003 8:33 AM Subject: [ ] (unknown)Hi to everyone! I am new to this group and not sure if I am doing thisright. I have AIH. My Mom died from this disease in the December of 2000.(She did not know she had this) I went to the doctors because I quitsmoking a few months after my mom's passing. I thought my thyroid medicationneeded to be ajusted. My doctor did a liver panel because of what happen tomy mom and when the test came back my liver # were very high(10 X higherthan my mom's) After months of different test and ton's of blood work Ibecame very ill. Liver biospy confirmed the AIH. I was pretty sick for along time. They put me on 60mg of predisone and eventually I accepted theimmuran. I'm off the predisone and just take the 100mg immuran. My livernumbers have been good now for almost a year. Does anyone get nausea fromthe immuran? I have alot of body aches but not like when I was really ill.I am sure all that is from the arthitis. I have started seeing ahepatoligist and I still have the care from my regular doctor. Most days Idon't feel really good. I would like my energy level to be better. After Igot better I did start smoking again when my husband and I separated. I knowI have to quit! I don't drink. I never drank much before but now that thedoctors say no drinking I want a drink! Anyway I hope I'm doing this right.Everyone have a good day. I have to get ready for work. I'm happy that Ifound this support group. It's a little over whelming with all the e-mailsto read, but I'll get the hang of it! Does anyone know the statitics forhow many people have this illness? I pretty much doubt there is anyone frommy area who has AIH. There are no liver support groups of any kind aroundhere. Haveto go! -NH

May 18, 2003

WOW.......no wonder you don't want to go far! I wouldn't either. Thanks for the explaination...

Debby

RE: [ ] (unknown)

, Interesting that you say, since the Dr. told you not to have a drink, younow want one someone else (Joan??) said the same thing. I think ourcommonality may be tenacity or stubbornness. I have been restricted totravel more than 4 hours from the transplant center and of course I now wantto go all kinds of places. Seriously, sounds like you responded to the prednisone well. I can't commenton the Imuran, I couldn't tolerate it. Someone will pop in with thestatistics, I don't know. I do however doubt you are the only one in yourarea, I have never heard however of enough people in a certain area havingit to form a support group, but, hey, you now have us! Welcome,Patty [AIH 1980 - TX 1997 - relisted 2003]-----Original Message-----From: NoceraDesigns@... [mailto:NoceraDesigns@...] Sent: Sunday, May 18, 2003 8:33 AM Subject: [ ] (unknown)Hi to everyone! I am new to this group and not sure if I am doing thisright. I have AIH. My Mom died from this disease in the December of 2000.(She did not know she had this) I went to the doctors because I quitsmoking a few months after my mom's passing. I thought my thyroid medicationneeded to be ajusted. My doctor did a liver panel because of what happen tomy mom and when the test came back my liver # were very high(10 X higherthan my mom's) After months of different test and ton's of blood work Ibecame very ill. Liver biospy confirmed the AIH. I was pretty sick for along time. They put me on 60mg of predisone and eventually I accepted theimmuran. I'm off the predisone and just take the 100mg immuran. My livernumbers have been good now for almost a year. Does anyone get nausea fromthe immuran? I have alot of body aches but not like when I was really ill.I am sure all that is from the arthitis. I have started seeing ahepatoligist and I still have the care from my regular doctor. Most days Idon't feel really good. I would like my energy level to be better. After Igot better I did start smoking again when my husband and I separated. I knowI have to quit! I don't drink. I never drank much before but now that thedoctors say no drinking I want a drink! Anyway I hope I'm doing this right.Everyone have a good day. I have to get ready for work. I'm happy that Ifound this support group. It's a little over whelming with all the e-mailsto read, but I'll get the hang of it! Does anyone know the statitics forhow many people have this illness? I pretty much doubt there is anyone frommy area who has AIH. There are no liver support groups of any kind aroundhere. Haveto go! -NH

May 18, 2003

Welcome :

So sorry to hear about losing your mother to AIH. And now to think of you going through the same.... Bless your heart and we are glad you are here. Marty

[ ] (unknown)

Hi to everyone! I am new to this group and not sure if I am doing thisright. I have AIH. My Mom died from this disease in the December of2000. (She did not know she had this) I went to the doctors because Iquit smoking a few months after my mom's passing. I thought my thyroidmedication needed to be ajusted. My doctor did a liver panel because ofwhat happen to my mom and when the test came back my liver # were veryhigh(10 X higher than my mom's) After months of different test and ton'sof blood work I became very ill. Liver biospy confirmed the AIH. I waspretty sick for a long time. They put me on 60mg of predisone andeventually I accepted the immuran. I'm off the predisone and just takethe 100mg immuran. My liver numbers have been good now for almost ayear. Does anyone get nausea from the immuran? I have alot of bodyaches but not like when I was really ill. I am sure all that is from thearthitis. I have started seeing a hepatoligist and I still have the carefrom my regular doctor. Most days I don't feel really good. I would likemy energy level to be better. After I got better I did start smokingagain when my husband and I separated. I know I have to quit! I don'tdrink. I never drank much before but now that the doctors say no drinkingI want a drink! Anyway I hope I'm doing this right. Everyone have a goodday. I have to get ready for work. I'm happy that I found this supportgroup. It's a little over whelming with all the e-mails to read, but I'llget the hang of it! Does anyone know the statitics for how many peoplehave this illness? I pretty much doubt there is anyone from my area whohas AIH. There are no liver support groups of any kind around here. Haveto go! -NH

May 19, 2003

I think it depends on the kid. My son was more alert on the Valtrex

(very subtle improvement) but the Famvir really was more noticeable in the

improvements. More with it, happier, more speech, less motor planning

difficulties. We also started iron supps at the same time as Famvir, so its

hard to say if it's both or either leading to improvement.

Becky

(unknown)

> Hi,

> Does anybody have any idea about Famvir versus Valtrex.My son is on Valtre

> for the last 5-6 weeks and I have seen some alertness.But Dr.G said that

> if nothing else is seen ,then he will change it to Famvir.

> Is Famvir a better drug than Valtrex with the same dosage---my son takes

> 1/2 Valtrex for 3 timesa day everyday. Does Famvir give more encouraging

> results with the same dosage?

> Any input on this would be really great----Thanks---Jayita

>

_________________________________________________________________

`````````````````````````````````````

Responsibility for the content of this message lies strictly with

the original author, and is not necessarily endorsed by or the

opinion of the Research Institute.

May 20, 2003

Epilepsy and autism are very common. There are quite a number of biomedical

interventions you can do with great results. Have you tried any - diet,

methyl b-12, supplements, chelation, secretin etc?

You can get a lot of info from the Autism Research Institute website at

<A HREF= " http://www.autism.com/ari/ " >http://www.autism.com/ari/</A>

It also has a list of DAN doctors who know and use the biomedical

interventions.

In a message dated 5/20/2003 5:58:12 AM Eastern Standard Time,

sabinabeano13a@... writes:

> hi there i have an 8 year old son who is fine, but our daughter who

> is 5 and we have been told she has autism from a young age we

> always thought she might have, she also has Epilepsy is it normal

> for the 2 to go together? she also has pica very bad and will eat

> every thing is there a way i can i get her to stop?

> i also have a 2 year old boy who was born at 28 weeks he was very

> poorly and is still on Oxygen at night and nebs, he is still not

> walking and talking and is also very slow , like our little girl was,

> but all the Dr are saying its because he was prem, but i was also

> told that when mollie was a baby as she was 6 weeks early, is there a

> web site about autism in girls where i can find out more? and thanks

> for taking the time to read my post

> sabina

>

May 20, 2003

Epilepsy and autism are very common. There are quite a number of biomedical

interventions you can do with great results. Have you tried any - diet,

methyl b-12, supplements, chelation, secretin etc?

You can get a lot of info from the Autism Research Institute website at

<A HREF= " http://www.autism.com/ari/ " >http://www.autism.com/ari/</A>

It also has a list of DAN doctors who know and use the biomedical

interventions.

In a message dated 5/20/2003 5:58:12 AM Eastern Standard Time,

sabinabeano13a@... writes:

> hi there i have an 8 year old son who is fine, but our daughter who

> is 5 and we have been told she has autism from a young age we

> always thought she might have, she also has Epilepsy is it normal

> for the 2 to go together? she also has pica very bad and will eat

> every thing is there a way i can i get her to stop?

> i also have a 2 year old boy who was born at 28 weeks he was very

> poorly and is still on Oxygen at night and nebs, he is still not

> walking and talking and is also very slow , like our little girl was,

> but all the Dr are saying its because he was prem, but i was also

> told that when mollie was a baby as she was 6 weeks early, is there a

> web site about autism in girls where i can find out more? and thanks

> for taking the time to read my post

> sabina

>

May 20, 2003

thanks for that mary at the mo any info is great to us as we are

very new to all this thanks for yuor help and i am trying my herdest

to do all my homework and get the best we can for our little mollie

thanks again sabina

In autism , Lake260@a... wrote:

> Epilepsy and autism are very common. There are quite a number of

biomedical

> interventions you can do with great results. Have you tried any -

diet,

> methyl b-12, supplements, chelation, secretin etc?

> You can get a lot of info from the Autism Research Institute

website at

> <A HREF= " http://www.autism.com/ari/ " >http://www.autism.com/ari/</A>

> It also has a list of DAN doctors who know and use the biomedical

> interventions.

>

> In a message dated 5/20/2003 5:58:12 AM Eastern Standard Time,

> sabinabeano13a@y... writes:

>

> > hi there i have an 8 year old son who is fine, but our daughter

who

> > is 5 and we have been told she has autism from a young age we

> > always thought she might have, she also has Epilepsy is it normal

> > for the 2 to go together? she also has pica very bad and will eat

> > every thing is there a way i can i get her to stop?

> > i also have a 2 year old boy who was born at 28 weeks he was very

> > poorly and is still on Oxygen at night and nebs, he is still not

> > walking and talking and is also very slow , like our little girl

was,

> > but all the Dr are saying its because he was prem, but i was also

> > told that when mollie was a baby as she was 6 weeks early, is

there a

> > web site about autism in girls where i can find out more? and

thanks

> > for taking the time to read my post

> > sabina

> >

>

May 24, 2003

Hi,

I must have missed your earlier posting. I have LongQT but it is not hereditary. No one in my family has it and they were all checked. I was diagnosed with it over a year ago when I experienced a Pottasium dumping in my body and went into Sudden Cardiac Arrest. I have an AICD.....paced but never shocked, at least as far as I know.

There is an MSN group of Long QTers that I found helpful before

Click here: LQTS. They were able to answer many of my questions.

Should you wish to contact me though I would be glad to lend you some support Scrapnfriend@...

May 24, 2003

Hi Debbie,

I think I may be too old for what you are looking for for your grandson, I'm 24, but I'd be happy to talk to him about Long QT as that is what I have my ICD for.

Feel free to pass my email on to him: mai_lin@...

(unknown)

I have never recieved any response from any person having long qt so i am doubting there is anyone.but now i have another question and if i dont get a reply this time i'm definatly outta here.

Are there any children or younger teens in this group that might want to comunicate with my grandson who is 12 that lives with me again. he had his first pacer since 7th birthday and defib since december of 2000. Is there no support here for long qt-ers at all?

MSN 8 helps ELIMINATE E-MAIL VIRUSES. Get 2 months FREE*. Please visit the Zapper homepage athttp://www.ZapLife.org

May 24, 2003

THANKS JENNIFER, HE WILL BE IN CONTACT WITH YOU JUST AS SOON AS HE THINKS UP HIS SCREEN NAME, PROBABLY BE SKITTLES, NOT QUITE AN EMINEM (SMILING)

GOD BLESS

DEBBIE

>From: "mai_lin"

>Reply- >

>Subject: Re: (unknown) >Date: Sat, 24 May 2003 00:03:38 -0400 > >Hi Debbie, > >I think I may be too old for what you are looking for for your grandson, I'm 24, but I'd be happy to talk to him about Long QT as that is what I have my ICD for. > >Feel free to pass my email on to him: mai_lin@... > > > (unknown) > > > I have never recieved any response from any person having long qt so i am doubting there is anyone.but now i have another question and if i dont get a reply this time i'm definatly outta here. > > Are there any children or younger teens in this group that might want to comunicate with my grandson who is 12 that lives with me again. he had his first pacer since 7th birthday and defib since december of 2000. Is there no support here for long qt-ers at all? > > > > >------------------------------------------------------------------------------ > MSN 8 helps ELIMINATE E-MAIL VIRUSES. Get 2 months FREE*. >

May 24, 2003

Hi, my name is . I have 2 children (20 & 16) with ICDs. My daughter (16) said it would be okay if your grandson emailed her. Her email is AKdancer24@.... In the subject box, please make sure he writes "LQT or ICD'' something so she knows not to delete it as she tends to do that to email she doesn't recognize. Your grandson is blessed to have a Grandma who loves him enough to find support for him. God Bless,

May 27, 2003

My children have had tons of teachers and have been through different school

districts. They are good and bad everywhere. Even if you worked in the worst

school district that is not a reflection really on you even though it seems

they way if you reach deep inside and teach to the best of your ability and you

brighten the future of just one child then that makes you a special person

and a great teacher. I am an exemplerary school district. We are in Deer Park

even though it's an awesome school district there are problems there are

teachers that are not the best and then there are the best of the best. We also

lived in ClearLake for a while where Angel attended Clear Creek Elementary she

had one of the worst teachers ever that lady was very scary. She would scream

at the children who where all disabled she would be nasty to us and forbid us

to ever enter the classroom. The next year she has probably the best

classroom teachers she has ever had. In Deer Park they have always had awesome

teachers and they are both doing well in school. The only problem I have is

Unless

the district diagnosis and labels a child as severely autistic you have to

fight tooth and nail to get any help for a child on the autistic spectrum here

anyways. In my case Angel is definitely autistic the school would never even

discuss autism until finally this year. They told me point blank we know she is

on the scale but she has so many challenges we don't know if she is pdd-nos

or severely autistic. They have always told us she was not autistic while drs

always say she is. So they are getting away with leaving our children behind

because also in the ARD after saying they don't know where she fits on the

scale so they won't diagnose and label her as autistic they also said that the

programs for autistic children that they offer are reserved for those children

labeled as severely autistic. So all the rest of the children in the spectrum

are left out. Because it is possibly but not for sure and because her

behaviors are very severe and some things she does are serious dangerous they

have

made and exception for Angel but see I wouldn't sign anything till they agreed

to help and I brought case workers from Commission for the Blind and MHMRA into

the ARD. The school district and teachers have evaded these agencies all

year when they ask for information on Angel ect... and me as well. Why because

they know Angel needs more help but they really do not care what a family is

facing with a child like this. If they have problems with the child in school

then they sooner or later will give in to the parent which is what happened

here.

Tammy

May 27, 2003