New here

[Guest guest]

Dear Carol,

Thanks for your kind words, I tried to put things in plain language, I'm kinda an emotional type person, and more than once I've cried while responding to others posts. It all floods back to me when I hear what others are going through at the beginning of this Flatback journey. Pain even though it's gone leaves an emotional imprint on your brain. One of the Gifts that Scoliosis has given me is empathy for others, a lesson I was dearly in need of. I'm glad I could be a help to you, thats what we are here for, no one gets this mess like we do.

Colorado Springs

[ ] Re: New here> > > I'm new here too, my > name is Marci. I see on > these groups everyone > talking about revision > surgury after revision > surgury. I've only had > one surgury that was in > 1980 when I had my > spinal fusion. I have > had to work all my life > to support myself and > cannot take time of to > have "surgury" after > surgury and I don't > think I'd want to. > It is now about 25 > years and I have had > increasing back pain. > I've lost the abilaty to > lift to much and also to > stand for a long period > of time, witch limits > the type of jobs I can > do.> I am petrified to get > more surgury, I don't > really trust doctors, > you know they don't > really know that much. > They fix one problem > and give you another one.> God Bless you, and be > careful, we only can > really take care of > ourselves. Luv, Marci>

[Guest guest]

Degenerative Disc Disease

>

> Thanks ........... What does DDD mean?

[Guest guest]

Thanks , it's good

to have support. Marci

[Guest guest]

Cam/Cristl/,

I realize that I'm in the minority with this one, but I did not require

an osteotomy to correct my sagittal imbalance (which was slight). Dr.

Bridwell was able to use the cages at L4-5 and L5-S1 to create

sufficient lordosis to restore my sagittal balance. Interestingly, Dr.

LaGrone stated that he would've done the same...used cages at the

unfused levels to create sufficient lordosis (that freaked me out the

most about the two consultations since I had not heard any patients

suggest that sufficient lordosis might be achieved with cages, but they

both said it - and Dr. Bridwell did it).

I do wonder if I had waited five more years or so if an osteotomy

would've been necessary. Thank God I'll never know. I feel perfectly

balanced now...knock on wood.

kam

Most of us that have had revision for flatback and are/were repairing a

fixed sagittal imbalance, which requires and osteotomy (removal of a

wedge shaped piece from the vertebrae) as well as dealing with the more

immediate causes of the pain...i.e. decompressing the nerve roots from

the degenerating discs below the fusion and stabilizing the whole mess

by fusing into the sacrum and also replacing the failing discs with

cages. Usually accomplished in two surgeries.

[Guest guest]

,

Welcome to the group. Hope you can find lots of useful info on here.

If you have any questions about the test results, post them here and

there are alot of ppl that will help you understand them.

Dawn

> >

> hi dawn

> im new too. my name is susan martz. im not sure i have low thryoid

> july 25th i have been research thryoid information you sound like i

> have it same. i will have another test july 25 to make sure same

> amount level or change so to see which im in low or high so thank

you

> for ur feeling and experience share on post message.

>

[Guest guest]

Well, you just got started, so you've got that out of the way. Welcome. My name is Dave and I've been around a few years. I went through treatment in 2001 and have been undetectable since. I don't know too much about the alternative medicines. Looking forward to learning more about you. -dz-lighteyes1012 <francesca1012@...> wrote: Hello,I am new to this site but quite a few years under the Dragon.I haven't done this before and don't know how to get started.Looking forward to talking with someone

re: symptoms and alternate treatments.F

[Guest guest]

First of all welcome to the group.

Your are making a pretty good start. Just jump in

there with your questions.

For me the worst symptom is the extreme fatigue. This

is probably due to the fact that I have stage 4

cirrhosis.

Most of us here have been on the convevtional

treatment. (Ribavarin & Some form of Interferon Usuall

Peg_ Intron) I have under gone this treatment 4 times

since 1996 always relapsing afterwards First 2 times

Peg-Intron was not available yet. Some of the side

effects are Extreme fatigue, Fever, Flu like aches and

pains. These usually become tolerable after a few

weeks of treatment. Some of the more serious side

effects are anemia from the Riba varin. Some of the

side effects for the Interferon include depression in

some cases thoughts of suicide, a lowering of

platelets.

Some of the alternative treatments, at least ones that

I know about include Milk thistle, and high doses of

IV vitamin c.

I hope that this at least gives you some information

to start with.

--- lighteyes1012 <francesca1012@...> wrote:

> Hello,

>

> I am new to this site but quite a few years under

> the Dragon.

> I haven't done this before and don't know how to get

> started.

> Looking forward to talking with someone re: symptoms

> and alternate

> treatments.

>

>

> F

>

>

>

>

>

__________________________________________________

[Guest guest]

Hello and thank you for your response. I was diagnosed in 94 after a needle stick at work. I tried 1 injection of interferon but felt it would leave me too debilitated to even work. It took a few years before I would even have a liver biopsy done, what a joy that was! Since that time I have only used alternate treatments and try to eat healthy. My viral load does fluctuate but my liver enzymes have been normal for the most part. The Doc has tried to convince me to have another biopsy but I really don't want to go through that again. I go every few months to have my labs checked and to have a physical. I do experience ribcage pain from the chronic inflammation as well as joint and muscle aches and on occasion I break out in a rash. "Ain't life grand?" I can't even imagine taking intron/riba because I'd probably end up seeing a shrink. It's

good to be able to talk to some who can relate to all of this. Thanks, F. <ralexanthegreat@...> wrote: First of all welcome to the group.Your are making a pretty good start. Just jump inthere with your questions.For me the worst symptom is the extreme fatigue. Thisis probably due to the fact that I have stage 4cirrhosis.Most of us here have been on the convevtionaltreatment. (Ribavarin & Some

form of Interferon UsuallPeg_ Intron) I have under gone this treatment 4 timessince 1996 always relapsing afterwards First 2 timesPeg-Intron was not available yet. Some of the sideeffects are Extreme fatigue, Fever, Flu like aches andpains. These usually become tolerable after a fewweeks of treatment. Some of the more serious sideeffects are anemia from the Riba varin. Some of theside effects for the Interferon include depression insome cases thoughts of suicide, a lowering ofplatelets.Some of the alternative treatments, at least ones thatI know about include Milk thistle, and high doses ofIV vitamin c. I hope that this at least gives you some informationto start with.--- lighteyes1012 <francesca1012verizon (DOT) net> wrote:> Hello,> > I am new to this site but quite a few years under> the

Dragon.> I haven't done this before and don't know how to get> started.> Looking forward to talking with someone re: symptoms> and alternate > treatments.> > > F> > > > > __________________________________________________

[Guest guest]

Dear Francis, Welcome to this group My Dear, so glad that you found us, just sorry it is under these circumstances. You have come to a very knowledgeable group, and wonderful compassionate people. Know that you will never be judged in anyway shape of form for you o[ions or feelings. We will stand behind you in whatever decisions you make. Choosing to treat if a very tough call and a hard one to make no matter what the circumstances. Just to let you know a little about me - I am 42 years young, geno 1A stage 1 grade 3. Over all I am very blessed and my liver is in very good shape compared to what it could be. I found out I was hep-c postive, purely by accident while having an emergency surgery out in Pheonix, AZ. I was taken to the Mayo Hospital, and them being a research hospital, I feel tend to be more careful and check things out more often. Strictly my opinion. Nonetheless, they told me I had hep-c and asked me various questions, well I had a indurance physical about 3 y ears prior, and I had tried cocaine for the first time June 16 2002. This is the day I became infected, and I found out I had it Sept 9th 2003. I did the treatment right away, and cleared the virus by 11 weeks, unfortunately I had to move home to Kansas and lost my insurance and the state wouldn't pick me up at the time. I remained clear for almost 2 years and found out that I am out of remission this February. MY viral load in 2003 was never over 1 million, however t his time I am up to 7 million. As my Doctor puts it - it came back with a vengeance. I picked up my medications to start again today. I have to go back to the Doctor tomorrow. It's kind of a bummer as I have to drive 3 hours to my hep doc, as I live in a small and rural area in the southwest corner of Kansas, and to get some good doc's or specialist, we must go out of towm. After doing TX the first time, it's much harder for me to do it again, as I k now exactly what to expect, and I had allot of side affects. Most the time, actually about 75%, I was in bed and in allot of pain. I too have the rashes like you - which get very severe while on TX, and in fact I am very scarred from it, Although all the sides are just awful, I got a taste of what it is like to feel good again, and it was wonderful - so I am trying again. However, there are allot of people like yourself that are non responder's or should I say, can't take the TX. I have a very Dear Friend, that couldn't take it as he nearly went crazy with the first shot. However, he eventually got the TP and what is even more amazing was not long before that TP, his viral load was undetectable, and still remains a SVR... I feel like The Dear Lord played a part in this miracle. Anyways, I just wanted to introduce myself and give you a warm welcome. WE will all be here for you and try to help in any way we can. Love, hugs and prayers to you and your loved o nes May God Bless you and yours Marie -- Re: [ ] New Here Hello and thank you for your response. I was diagnosed in 94 after a needle stick at work. I tried 1 injection of interferon but felt it would leave me too debilitated to even work. It took a few years before I would even have a liver biopsy done, what a joy that was! Since that time I have only used alternate treatments and try to eat healthy. My viral load does fluctuate but my liver enzymes have been normal for the most part. The Doc has tried to convince me to have another biopsy but I really don't want to go through that again. I go every few months to have my labs checked and to have a physical. I do experience ribcage pain from the chronic inflammation as well as joint and muscle aches and on occasion I break out in a rash. "Ain't life grand?" I can't even imagine taking intron/riba because I'd probably end up seeing a shrink. It's good to be able to talk to some who can relate to all of this. Thanks, F. <ralexanthegreat > wrote: First of all welcome to the group.Your are making a pretty good start. Just jump inthere with your questions.For me the worst symptom is the extreme fatigue. Thisis probably due to the fact that I have stage 4cirrhosis.Most of us here have been on the convevtionaltreatment. (Ribavarin & Some form of Interferon UsuallPeg_ Intron) I have under gone this treatment 4 timessince 1996 always relapsing afterwards First 2 timesPeg-Intron was not available yet. Some of the sideeffects are Extreme fatigue, Fever, Flu like aches andpains. These usually become tolerable after a fewweeks of treatment. Some of the more serious sideeffects are anemia from the Riba varin. Some of theside effects for the Interferon include depression insome cases thoughts of suicide, a lowering ofplatelets.Some of the alternative treatments, at least ones thatI know about include Milk thistle, and high doses ofIV vitamin c. I hope that this at least gives you some informationto start with.--- lighteyes1012 <francesca1012verizon (DOT) net> wrote:> Hello,> > I am new to this site but quite a few years under> the Dragon.> I haven't done this before and don't know how to get> started.> Looking forward to talking with someone re: symptoms> and alternate > treatments.> > > F> > > > > __________________________________________________

[Guest guest]

Hey ..Bout time we hear from you..I've missed ya girll..How have you been?? I been doing ok..I itch rightn ow but I went tan yesterday and burned myself so I am itching today bad..LOL..Wish I had a monkey to scratch on command..LOL.Hope all is well with you..Stay in touch girl and to all the newbies...WELCOME TO OUR WORLD!!! JanDavies1988 <Davies1988@...> wrote: Dear Francis, Welcome to this group My Dear, so glad that you found us, just sorry it is under these circumstances. You have come to a very knowledgeable group, and wonderful compassionate people. Know that you will never be judged in anyway shape of form for you o[ions or feelings. We will stand

behind you in whatever decisions you make. Choosing to treat if a very tough call and a hard one to make no matter what the circumstances. Just to let you know a little about me - I am 42 years young, geno 1A stage 1 grade 3. Over all I am very blessed and my liver is in very good shape compared to what it could be. I found out I was hep-c postive, purely by accident while having an emergency surgery out in Pheonix, AZ. I was taken to the Mayo Hospital, and them being a research hospital, I feel tend to be more careful and check things out more often. Strictly my opinion. Nonetheless, they told me I had hep-c and asked me various questions, well I had a indurance physical about 3 y ears prior, and I had tried cocaine for the first time June 16 2002. This is the day I became infected, and I found out I had it Sept 9th 2003. I did the treatment right away, and

cleared the virus by 11 weeks, unfortunately I had to move home to Kansas and lost my insurance and the state wouldn't pick me up at the time. I remained clear for almost 2 years and found out that I am out of remission this February. MY viral load in 2003 was never over 1 million, however t his time I am up to 7 million. As my Doctor puts it - it came back with a vengeance. I picked up my medications to start again today. I have to go back to the Doctor tomorrow. It's kind of a bummer as I have to drive 3 hours to my hep doc, as I live in a small and rural area in the southwest corner of Kansas, and to get some good doc's or specialist, we must go out of towm. After doing TX the first time, it's much harder for me to do it again, as I k now exactly what to expect, and I had allot of side affects. Most the time, actually about 75%, I was in bed and in

allot of pain. I too have the rashes like you - which get very severe while on TX, and in fact I am very scarred from it, Although all the sides are just awful, I got a taste of what it is like to feel good again, and it was wonderful - so I am trying again. However, there are allot of people like yourself that are non responder's or should I say, can't take the TX. I have a very Dear Friend, that couldn't take it as he nearly went crazy with the first shot. However, he eventually got the TP and what is even more amazing was not long before that TP, his viral load was undetectable, and still remains a SVR... I feel like The Dear Lord played a part in this miracle. Anyways, I just wanted to introduce myself and give you a warm welcome. WE

will all be here for you and try to help in any way we can. Love, hugs and prayers to you and your loved o nes May God Bless you and yours Marie -- Re: [ ] New

Here Hello and thank you for your response. I was diagnosed in 94 after a needle stick at work. I tried 1 injection of interferon but felt it would leave me too debilitated to even work. It took a few years before I would even have a liver biopsy done, what a joy that was! Since that time I have only used alternate treatments and try to eat healthy. My viral load does fluctuate but my liver enzymes have been normal for the most part. The Doc has tried to convince me to have another biopsy but I really don't want to go through that again. I go every few months to have my labs checked and to have a physical. I do experience ribcage pain from the chronic inflammation as well as joint and muscle aches and on occasion I break out in a rash. "Ain't life grand?" I can't even imagine taking intron/riba

because I'd probably end up seeing a shrink. It's good to be able to talk to some who can relate to all of this. Thanks, F. <ralexanthegreat > wrote: First of all welcome to the group.Your are making a pretty good start. Just jump inthere with your questions.For me the worst symptom is the extreme fatigue. Thisis probably due to the fact that I have stage 4cirrhosis.Most of us here have been on the convevtionaltreatment. (Ribavarin & Some form of Interferon UsuallPeg_ Intron) I have under gone this treatment 4 timessince 1996 always relapsing afterwards First 2 timesPeg-Intron was not available yet. Some of the sideeffects are Extreme fatigue, Fever, Flu like aches andpains. These usually become tolerable

after a fewweeks of treatment. Some of the more serious sideeffects are anemia from the Riba varin. Some of theside effects for the Interferon include depression insome cases thoughts of suicide, a lowering ofplatelets.Some of the alternative treatments, at least ones thatI know about include Milk thistle, and high doses ofIV vitamin c. I hope that this at least gives you some informationto start with.--- lighteyes1012 <francesca1012verizon (DOT) net> wrote:> Hello,> > I am new to this site but quite a few years under> the Dragon.> I haven't done this before and don't know how to get> started.> Looking forward to talking with someone re: symptoms> and alternate > treatments.> > > F> > > > >

__________________________________________________

[Guest guest]

Hey all, glad that you are all finally coming out to

greet the newbies. Life is grand, for me anyway. I

stopped the treatments 2 months ago on my own. I am

clean and free from the hep c so far. Treatments were

very very hard for me. No sign of the virus. I feel

good and am looking better every day.I lost a total of

65 lbs and have not after 2 months gained any back.My

hair is growing at a fast speed, i'm loving it!!Did

the treatments for 7 months and was clean from the

virus after 3 months. My viral load is good and i am

taking very good care of myself.Loving and embracing

life!! Would never do the treatments again. I would

rather die a slow death. But thats how i feel.Good

luck to all.

Sorry that you have to go through them again ,

i will pray for you. I think of you often.Hang tough,

--- Janet <jfw4359@...> wrote:

> Hey ..Bout time we hear from you..I've missed ya

> girll..How have you been?? I been doing ok..I itch

> rightn ow but I went tan yesterday and burned myself

> so I am itching today bad..LOL..Wish I had a monkey

> to scratch on command..LOL.Hope all is well with

> you..Stay in touch girl and to all the

> newbies...WELCOME TO OUR WORLD!!!

>

> Jan

>

> Davies1988 <Davies1988@...> wrote:

>

> Dear Francis,

> Welcome to this group My Dear, so glad that you

> found us, just sorry it is under these

> circumstances. You have come to a very

> knowledgeable group, and wonderful compassionate

> people. Know that you will never be judged in

> anyway shape of form for you o[ions or feelings. We

> will stand behind you in whatever decisions you

> make. Choosing to treat if a very tough call and a

> hard one to make no matter what the circumstances.

> Just to let you know a little about me - I am 42

> years young, geno 1A stage 1 grade 3. Over all I am

> very blessed and my liver is in very good shape

> compared to what it could be. I found out I was

> hep-c postive, purely by accident while having an

> emergency surgery out in Pheonix, AZ. I was taken

> to the Mayo Hospital, and them being a research

> hospital, I feel tend to be more careful and check

> things out more often. Strictly my opinion.

> Nonetheless, they told me I had hep-c and asked me

> various questions, well I had a indurance physical

> about 3 y ears prior, and I had tried cocaine for

> the first time June 16 2002. This is the day I

> became infected, and I found out I had it Sept 9th

> 2003. I did the treatment right away, and cleared

> the virus by 11 weeks, unfortunately I had to move

> home to Kansas and lost my insurance and the state

> wouldn't pick me up at the time. I remained clear

> for almost 2 years and found out that I am out of

> remission this February. MY viral

> load in 2003 was never over 1 million, however t

> his time I am up to 7 million. As my Doctor puts it

> - it came back with a vengeance. I picked up my

> medications to start again today. I have to go back

> to the Doctor tomorrow. It's kind of a bummer as I

> have to drive 3 hours to my hep doc, as I live in a

> small and rural area in the southwest corner of

> Kansas, and to get some good doc's or specialist, we

> must go out of towm.

> After doing TX the first time, it's much harder

> for me to do it again, as I k now exactly what to

> expect, and I had allot of side affects. Most the

> time, actually about 75%, I was in bed and in allot

> of pain.

> I too have the rashes like you - which get very

> severe while on TX, and in fact I am very scarred

> from it, Although all the sides are just awful, I

> got a taste of what it is like to feel good again,

> and it was wonderful - so I am trying again.

> However, there are allot of people like yourself

> that are non responder's or should I say, can't take

> the TX. I have a very Dear Friend, that couldn't

> take it as he nearly went crazy with the first shot.

> However, he eventually got the TP and what is even

> more amazing was not long before that TP, his viral

> load was undetectable, and still remains a SVR... I

> feel like The Dear Lord played a part in this

> miracle.

> Anyways, I just wanted to introduce myself and

> give you a warm welcome. WE will all be here for

> you and try to help in any way we can.

> Love, hugs and prayers to you and your loved o nes

> May God Bless you and yours

> Marie

>

> -- Re: [ ] New Here

>

>

> Hello and thank you for your response.

>

> I was diagnosed in 94 after a needle stick at

> work. I tried 1 injection of interferon but

> felt it would leave me too debilitated to even

> work. It took a few years before I would even have a

> liver biopsy done, what a joy that was!

> Since that time I have only used alternate

> treatments and try to eat healthy.

> My viral load does fluctuate but my liver enzymes

> have been normal for the most part.

> The Doc has tried to convince me to have another

> biopsy but I really don't want to go through that

> again. I go every few months to have my labs checked

> and to have a physical. I do experience ribcage pain

> from the chronic inflammation

> as well as joint and muscle aches and on occasion

> I break out in a rash. " Ain't life grand? " I can't

> even imagine taking intron/riba because I'd probably

> end up seeing a shrink.

> It's good to be able to talk to some who can

> relate to all of this.

>

> Thanks,

>

> F.

>

> <ralexanthegreat@...> wrote:

> First of all welcome to the group.

>

> Your are making a pretty good start. Just jump in

> there with your questions.

>

> For me the worst symptom is the extreme fatigue.

> This

> is probably due to the fact that I have stage 4

> cirrhosis.

>

> Most of us here have been on the convevtional

> treatment. (Ribavarin & Some form of Interferon

> Usuall

> Peg_ Intron) I have under gone this treatment 4

> times

> since 1996 always relapsing afterwards First 2 times

> Peg-Intron was not available yet. Some of the side

> effects are Extreme fatigue, Fever, Flu like aches

> and

> pains. These usually become tolerable after a few

> weeks of treatment. Some of the more serious side

> effects are anemia from the Riba varin. Some of the

> side effects for the Interferon include depression

> in

> some cases thoughts of suicide, a lowering of

> platelets.

>

> Some of the alternative treatments, at least ones

> that

> I know about include Milk thistle, and high doses of

> IV vitamin c.

>

> I hope that this at least gives you some information

> to start with.

>

>

>

> --- lighteyes1012 <francesca1012@...> wrote:

>

> > Hello,

> >

> > I am new to this site but quite a few years under

> > the Dragon.

> > I haven't done this before and don't know how to

> get

> > started.

> > Looking forward to talking with someone re:

> symptoms

> > and alternate

> > treatments.

> >

> >

> > F

> >

> >

> >

> >

> >

>

> __________________________________________________

>

[Guest guest]

-

Hi Amber,

I know how you are feeling. I am scared stressed also. Please

continue to come back. I also sit at the cp and look for a glimmer

of hope. So don't despair hope is there. It is great that he has

said words before. I have never heard my child say " Mama " . He is

18months. I scheduled an early intervention appoint in Aug. The wait

is killing me too!

Chantelle

-- In , " Amber "

<AlphavilleWych@...> wrote:

>

> This is my first letter here. I found this list from an apraxia

> website. I only first heard the word apraxia last night.

>

> I have to admit I am sitting here with tears streaming down my

> face. My son is 2 1/2. His name is Hunter and the pediatrician

> just suggested speech therapy for him. He said he's never seen

> a child do what Hunter does when he tries to talk. He seems to

> have whole conversations without opening his mouth. Hunter

> has said a few words before... he would use them for a couple

> weeks and then not again. Like shoe, socks, car, Apache, dada...

> he's never said mama. He is normal in all other areas, or even

> ahead in some areas. He uses the computer even (turns it on,

> goes through folders, double clicks on his games).

>

> So right now I am trying to get a speech therapist to come see

> him. I was told they will come to the house but I don't know

> exactly where to go. I have a number to call today and hopefully

> that will help.

>

> Anyway, I don't know what to say. I just wanted to let myself be

> known. Thanks for reading.

>

> ~~ Amber ~~

>

[Guest guest]

I'm so glad to here that you have responded well to treatment.I'll keep you in my prayers that you remain virus free.For those of us that respond and relapse, keep hanging in there. Even after four rounds of treatment I try to keep a positive attitude. Maybe there will be something in the future for us.I just wish that hepc got as much funding as HIV research. <royaltyjack@...> wrote: Hey all, glad that you are all finally coming out to greet the newbies. Life is

grand, for me anyway. I stopped the treatments 2 months ago on my own. I am clean and free from the hep c so far. Treatments were very very hard for me. No sign of the virus. I feel good and am looking better every day.I lost a total of 65 lbs and have not after 2 months gained any back.My hair is growing at a fast speed, I'm loving it!!Did the treatments for 7 months and was clean from the virus after 3 months. My viral load is good and i am taking very good care of myself.Loving and embracing life!! Would never do the treatments again. I would rather die a slow death. But that's how i feel.Good luck to all. Sorry that you have to go through them again , i will pray for you. I think of you often.Hang tough, .

See the all-new, redesigned .com. Check it out.

[Guest guest]

-

Hi Amber,

I know how you are feeling. I am scared stressed also. Please

continue to come back. I also sit at the cp and look for a glimmer

of hope. So don't despair hope is there. It is great that he has

said words before. I have never heard my child say " Mama " . He is

18months. I scheduled an early intervention appoint in Aug. The wait

is killing me too!

Chantelle

-- In , " Amber "

<AlphavilleWych@...> wrote:

>

> This is my first letter here. I found this list from an apraxia

> website. I only first heard the word apraxia last night.

>

> I have to admit I am sitting here with tears streaming down my

> face. My son is 2 1/2. His name is Hunter and the pediatrician

> just suggested speech therapy for him. He said he's never seen

> a child do what Hunter does when he tries to talk. He seems to

> have whole conversations without opening his mouth. Hunter

> has said a few words before... he would use them for a couple

> weeks and then not again. Like shoe, socks, car, Apache, dada...

> he's never said mama. He is normal in all other areas, or even

> ahead in some areas. He uses the computer even (turns it on,

> goes through folders, double clicks on his games).

>

> So right now I am trying to get a speech therapist to come see

> him. I was told they will come to the house but I don't know

> exactly where to go. I have a number to call today and hopefully

> that will help.

>

> Anyway, I don't know what to say. I just wanted to let myself be

> known. Thanks for reading.

>

> ~~ Amber ~~

>

[Guest guest]

Welcome to the site! It's very true that most of our apraxic kids

are very bright, social, wonderful children!

Are you in Western Pennsylvania, or would you be coming in from out-

of-town to see Hammer? My daughter used to get her therapy at

Children's North (where he has his office) and it was a wonderful

experience.

Kerri

[Guest guest]

Welcome to the site! It's very true that most of our apraxic kids

are very bright, social, wonderful children!

Are you in Western Pennsylvania, or would you be coming in from out-

of-town to see Hammer? My daughter used to get her therapy at

Children's North (where he has his office) and it was a wonderful

experience.

Kerri

[Guest guest]

>

> Welcome to the site! It's very true that most of our apraxic kids

> are very bright, social, wonderful children!

>

> Are you in Western Pennsylvania, or would you be coming in from out-

> of-town to see Hammer? My daughter used to get her therapy at

> Children's North (where he has his office) and it was a wonderful

> experience.

>

> Kerri

>

Hi kerri,

I am in western Pa. actually only about 25 minutes from childrens north

so its not going to be a long ride. I really hope we can get him on the

right track of therapy so we can start helping him. Like i said though

with the new slp he has already started to turn around a little bit. he

actually tried singing a song for the first time the other night and

also told his dad to take a chill pill and calm down lol.

[Guest guest]

>

> Welcome to the site! It's very true that most of our apraxic kids

> are very bright, social, wonderful children!

>

> Are you in Western Pennsylvania, or would you be coming in from out-

> of-town to see Hammer? My daughter used to get her therapy at

> Children's North (where he has his office) and it was a wonderful

> experience.

>

> Kerri

>

Hi kerri,

I am in western Pa. actually only about 25 minutes from childrens north

so its not going to be a long ride. I really hope we can get him on the

right track of therapy so we can start helping him. Like i said though

with the new slp he has already started to turn around a little bit. he

actually tried singing a song for the first time the other night and

also told his dad to take a chill pill and calm down lol.

[Guest guest]

Hello Janet, I have missed you too Girl! I know I have been away quite awhile so please forgive me. Yeah, it was quite a bummer and a shock when I found out I was out of remission, but I don't know if you remember, however, I was only on treatment the first time for 16 weeks, I moved from Arizona back to Kansas, where I am at now - I lost my insurance when I made the move, therefor I had to quit the treatment. I stayed clear for almost 2 years when I found out in February of this year that I was out of remission. I started feeling really tired, fatigued, although I was working 2 jobs at the time, trying to take care of my ailing Mother - I came down with a really bad cold, so I thought. I told my Doctor what was going on and asked him at that point if he would check my viral load, and sure enough it was back, and with a vengeance; my viral load was over 6 million. He also tested me for Mono, as I had been sick for so long, and more than just a flu - I was so exhausted, some days it was all I could do to go from one room to another. I had the mono, and my Doctor at the time, was only an internist, so when he ordered the biopsy he didn't realize or know that the Mono affects the liver, actually it attacks it and causes my major inflammation. My liver biopsy came back terrible - I had gone from stage 1 grade 2 to stage 3 grade 3 - we both thought I was looking at a transplant within a year, as fast as it was progressing. Make a long story short, I moved back to Kansas, to be close to kids and grand kids,and when I got a specialist, he got to looking at my medical records and noticed I had the mono at the same time we did the biopsy, so he ordered a new biopsy and Thank the Good Lord - I was still stage 1 but grade 3. I was so glad to hear the results I had earlier were only bad due to the mono. I just started treatment again, in fact I took my first shot on Friday, rough night the first night, actually it was terrible, but each day it's getting a little better.. So Janet - catch me up and tell me about you and your loved ones... I want to hear it all. And how is your health - hope and pray everything is going good for you.. Will wait to hear from you and sooooooooooooooooooooooo glad that we are back in touch again, this time I promise not to loose touch... I love ya Kido Love, Hugs,Prayers, and Peace -- Re: [ ] New Here> > > Hello and thank you for your response.> > I was diagnosed in 94 after a needle stick at> work. I tried 1 injection of interferon but> felt it would leave me too debilitated to even> work. It took a few years before I would even have a> liver biopsy done, what a joy that was!> Since that time I have only used alternate> treatments and try to eat healthy.> My viral load does fluctuate but my liver enzymes> have been normal for the most part.> The Doc has tried to convince me to have another> biopsy but I really don't want to go through that> again. I go every few months to have my labs checked> and to have a physical. I do experience ribcage pain> from the chronic inflammation> as well as joint and muscle aches and on occasion> I break out in a rash. "Ain't life grand?" I can't> even imagine taking intron/riba because I'd probably> end up seeing a shrink.> It's good to be able to talk to some who can> relate to all of this.> > Thanks,> > F.> > <ralexanthegreat > wrote:> First of all welcome to the group.> > Your are making a pretty good start. Just jump in> there with your questions.> > For me the worst symptom is the extreme fatigue.> This> is probably due to the fact that I have stage 4> cirrhosis.> > Most of us here have been on the convevtional> treatment. (Ribavarin & Some form of Interferon> Usuall> Peg_ Intron) I have under gone this treatment 4> times> since 1996 always relapsing afterwards First 2 times> Peg-Intron was not available yet. Some of the side> effects are Extreme fatigue, Fever, Flu like aches> and> pains. These usually become tolerable after a few> weeks of treatment. Some of the more serious side> effects are anemia from the Riba varin. Some of the> side effects for the Interferon include depression> in> some cases thoughts of suicide, a lowering of> platelets.> > Some of the alternative treatments, at least ones> that> I know about include Milk thistle, and high doses of> IV vitamin c. > > I hope that this at least gives you some information> to start with.> > > > --- lighteyes1012 <francesca1012verizon (DOT) net> wrote:> > > Hello,> > > > I am new to this site but quite a few years under> > the Dragon.> > I haven't done this before and don't know how to> get> > started.> > Looking forward to talking with someone re:> symptoms> > and alternate > > treatments.> > > > > > F> > > > > > > > > > > > __________________________________________________>

[Guest guest]

Thanks so much for your response.

I am looking forward to a good clean life .I too

will pray for all of you!! If that aweful Dragon

returns here i will just deal with it one day at a

time. My body could not handle the treatments again. I

admire you for being so strong.I was always so strong

headed ,but now my whole life has changed and i don't

want to blame anyone anymore ,nor do i want to be

angry.I love my life and i adore and love my man and

my children and thats all i need.But most of all i

have my Lord who saw me through all this madness!!!

Thanks again and i wish you luck this time around and

i will pray for you and all, take care ,

--- <ralexanthegreat@...>

wrote:

>

>

> I'm so glad to here that you have responded well to

> treatment.I'll keep you in my prayers that you

> remain virus free.

>

> For those of us that respond and relapse, keep

> hanging in there. Even after four rounds of

> treatment I try to keep a positive attitude. Maybe

> there will be something in the future for us.

>

> I just wish that hepc got as much funding as HIV

> research.

>

>

>

> <royaltyjack@...> wrote:

> Hey all, glad that you

> are all finally coming out to

> greet the newbies. Life is grand, for me anyway. I

> stopped the treatments 2 months ago on my own. I am

> clean and free from the hep c so far. Treatments

> were

> very very hard for me. No sign of the virus. I feel

> good and am looking better every day.I lost a total

> of

> 65 lbs and have not after 2 months gained any

> back.My

> hair is growing at a fast speed, I'm loving it!!Did

> the treatments for 7 months and was clean from the

> virus after 3 months. My viral load is good and i

> am

> taking very good care of myself.Loving and

> embracing

> life!! Would never do the treatments again. I would

> rather die a slow death. But that's how i feel.Good

> luck to all.

> Sorry that you have to go through them again

> ,

> i will pray for you. I think of you often.Hang

> tough,

>

> .

>

>

>

>

>

>

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

> See the all-new, redesigned .com. Check it

out.

__________________________________________________

[Guest guest]

In a message dated 04/08/2006 14:46:51 GMT Daylight Time,

niceneezer@... writes:

feel so bad for her because she is always itching and her skin is so

bad (red, swollen, and feels like leather). We are now trying to find

a DAN doctor for her. Does anybody have any suggestions or advice for

things to do in the meantime? I have put off her taking her to get her

booster shots for a year now. I'm not sure what to do about that

either??

IMHO

1. Forget the shots - period

2. Reduce and aim to remove as much SUGAR as possible - I think this is THE

MOST IMPORTANT part

3. My son's eczema is related to yeast and gut bugs as well as low fatty

acids

4. Organic Coconut oil on the skin can be soothing

Mandi in UK

[Guest guest]

Welcome!

My daughter, 5, also struggled with severe excema (amongst receptive/expressive

language problems, sensory issues, immune deficiencies, etc.). For us, the diet

didn't take care of it. The only thing that ever took care of her excema was

prescription Nystatin, 4ml 3 times a day for 6 months. We still have to use it

twice a day, at 3 ml. Your daughter might have a yeast problem like mine. There

are great books about avoiding foods that feed yeast. Check out " The Yeast

Connection " by Dr. Crook.

If you can get a script from your regular doctor while waiting to see a DAN

(sometimes the wait is long), ask for it from a compounding pharmacy with no

additives. If you do use it, start slowly, as yeast die off can be very hard on

a person (it releases toxins). You can use baking soda or activated charcoal to

help absorb those toxins (we used 1/4 tsp baking soda once a day). There are

also some extremely knowledgeable people on the list who can give great yeast

killing alternatives.

Finally, if you are interested in confirming a yeast problem, consider doing a

urine test and/or a stool test to check. We did a pediatric urine metabolic

profile analysis from Great Smokies that clearly demonstrated a severe yeast

problem.

Any questions, feel free to email me off line.

-------------- Original message --------------

From: " niceneezer " <niceneezer@...>

I am new to the groups so I would like to introduce myself. I'm a sahm

to Ellie age 4(almost 5) and Lukas age 6. Ellie is dx as having

expressive receptive language disorder with sensory issues. She has

severe food allergies(tested at Great Plains) as well as outdoor

allergies. She also has severe eczema. We started the GFCF diet about

8 months ago and really haven't noticed a difference. We also did the

peptide test which turned out normal.

I feel so bad for her because she is always itching and her skin is so

bad (red, swollen, and feels like leather). We are now trying to find

a DAN doctor for her. Does anybody have any suggestions or advice for

things to do in the meantime? I have put off her taking her to get her

booster shots for a year now. I'm not sure what to do about that

either??

Bethany

[Guest guest]

Mandi always has good advice!! I agree, skip the shots. I vaccinated until I

realized my son's autism was a direct result. Boosters will very likely only

make the situation worse. If you are talking about the kindergarden shots,

there is a 95% chance she is still immune anyway. We are reading more and more

about kids getting boosters and then regressing and/or developing more problems.

We stopped vaccinating our oldest and haven't at all with our 4 and 2 year olds.

No plans to either.

Eliminating sugar is a great idea. It depresses the immune system and feeds

yeast like crazy. Eczema for my kids is food intolerance. Are you using

digestive enzymes? They have been amazing for my children, with them we don't

have to be so strict with the diet and the eczema is gone.

Viral issues are also rampant with spectrum kids. Lots can be done with this

too. Coconut oil is great and enzyme therapy has been really effective.

You can look for a DAN or you can go at it alone with help as well. I don't

have a DAN but do have a chiro I can talk with and order any necessary tests.

We don't do Rx drugs so that hasn't made us need one either. Cheaper to be your

own doctor as well.

Mum231ASD@... wrote:

In a message dated 04/08/2006 14:46:51 GMT Daylight Time,

niceneezer@... writes:

feel so bad for her because she is always itching and her skin is so

bad (red, swollen, and feels like leather). We are now trying to find

a DAN doctor for her. Does anybody have any suggestions or advice for

things to do in the meantime? I have put off her taking her to get her

booster shots for a year now. I'm not sure what to do about that

either??

IMHO

1. Forget the shots - period

2. Reduce and aim to remove as much SUGAR as possible - I think this is THE

MOST IMPORTANT part

3. My son's eczema is related to yeast and gut bugs as well as low fatty

acids

4. Organic Coconut oil on the skin can be soothing

Mandi in UK

[Guest guest]

I would recommend delaying all vaccines at this time. Also, Evening

Primrose Oil by mouth can provide relief for eczema.

Pamela

" Courage is doing what you're afraid to do. There can be no courage unless

you're scared. "

Eddie Rickenbacker, top US fighter ace, WWI

_____

From: [mailto: ]

On Behalf Of niceneezer

Sent: Friday, August 04, 2006 9:45 AM

Subject: [ ] new here

I am new to the groups so I would like to introduce myself. I'm a sahm

to Ellie age 4(almost 5) and Lukas age 6. Ellie is dx as having

expressive receptive language disorder with sensory issues. She has

severe food allergies(tested at Great Plains) as well as outdoor

allergies. She also has severe eczema. We started the GFCF diet about

8 months ago and really haven't noticed a difference. We also did the

peptide test which turned out normal.

I feel so bad for her because she is always itching and her skin is so

bad (red, swollen, and feels like leather). We are now trying to find

a DAN doctor for her. Does anybody have any suggestions or advice for

things to do in the meantime? I have put off her taking her to get her

booster shots for a year now. I'm not sure what to do about that

either??

Bethany

[Guest guest]

I have a nice place for you to start. Go here and look at all the

videos, and check out the articles, especially his advice on diet.

You'll love it: http://www.childrenscornerschool.com/recoveries.htm

>

> We are totally new to this list and I have been lurking for a couple

> of weeks. My daughter, who is 4, has Cerebral Palsy as well as

> strong autistic features. She seemed totally " normal " at birth.

> As the months went by, she developed too slowly and became

> " tight " on the left side. Microcephaly became apparent. Autism

> is now making itself more clear as time goes by. It is obvious

> that the " autistic stuff " is truly her biggest obstacle as the CP

> is not THAT bad. It has taken me 4 years to pull this all apart.

> She never had a normal period and then regressed. It's always

> been a very slow curve of development. She is LOADED with

> sensory issues which we have tried to address with no luck,

> she remains nonverbal, ambulates with full assist, very laid back,

> extremely healthy, never sick. Tall and lean with a great appetite.

>

> I guess my question is, has anyone else's child been diagnosed

> with CP? Have you ever heard of Mercury poisoning causing CP?

> I have no idea of her cognitive status due to her autism, motor

> problems and lack of speech.

>

> I don't know whether to go down this whole road as she has more

> going on than autism. Thanks

>

> Lesley, mom to , 4 years,

>