New to group

August 25, 1999

Welcome and all the other new folks. Lynn in Wa. AIH

SFu1037062@... wrote:

> From: SFu1037062@...

>

> Hi everyone, I am new to the group, have been reading all the information and

> have learned more from this group than my doctor. I was diagnosed with AIH

> in April, 99

> My doctor has only treated one other and that was 10 years ago. I have an

> appointment with a Hepatologist Sept. 10 it took that long to get an

> appointment. I have a question the doctors can't answer. I had breast cancer

> and chemo in 1996. During Chemo my liver enzymes were elevated and then

> returned to normal no other testing was done. Does anyone know if this could

> have been the beginning of AIH? In April my symptoms were nausea, muscle and

> joint pain I was frist diagnosed with a virus and kidney infection, then I

> turned yellow and was sent to the emergency room and was diagnosed with Hep

> A. The next day I got sicker and was admitted to the hopsital. My enzymes

> were over 2000 and birublen was 20. Everyday they were increasing on the 5th.

> day I had a liver scan and biopsy which had to be done through the jugular

> vein because of low platelets. I am not sure what my ANA was but I was

> diagnosed with Autoimmune Hepatitis. After 14 days I was released from the

> hospital and put on 30 Predisone and 150 immuran and Aticall. I also have

> gallstones which my Dr. says is not a problem now. I am a diabetic and the

> predisone sent my sugar through the room I take 80 unites of insulin in the

> morning and 10 at night. My doctor took me off Predisone a month ago and now

> I am having more nausea and weak. I am not due to see my doctor until next

> week, but I am afraid my enzymes are going back up. The last test they were

> 3 times higher than normal.

> Thanks for all the information,

>

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

August 26, 1999

,

Welcome to the group. My enzymes were in the 2000's when I was first

diagnosed also and I was bright yellow too, my bilirubin was 258.

At present I am being weaned off pred. Were you taken straight off it or

weaned off it?

Even with the weaning process I have had a flare up already.

When I first got sick I never did have weakness in any areas, a touch of

nausea but not a lot, now with the weaning down, I have the nausea and

extreme weakness and muscles and joint aches. Currently I am down to 20mg

pred daily and 200mg cyclosporin daily.

Hope you get good results from the doctors, some people have to stay on a

very minimal dose of pred for life. Better than having those increased

enzymes and flare ups I assure you.

Good luck,

SueB.

----------

> From: SFu1037062@...

> onelist

> Subject: [ ] New to group

> Date: Wednesday, 25 August 1999 12:22

>

> From: SFu1037062@...

>

> Hi everyone, I am new to the group, have been reading all the information

and

> have learned more from this group than my doctor. I was diagnosed with

AIH

> in April, 99

> My doctor has only treated one other and that was 10 years ago. I have

an

> appointment with a Hepatologist Sept. 10 it took that long to get an

> appointment. I have a question the doctors can't answer. I had breast

cancer

> and chemo in 1996. During Chemo my liver enzymes were elevated and then

> returned to normal no other testing was done. Does anyone know if this

could

> have been the beginning of AIH? In April my symptoms were nausea, muscle

and

> joint pain I was frist diagnosed with a virus and kidney infection, then

I

> turned yellow and was sent to the emergency room and was diagnosed with

Hep

> A. The next day I got sicker and was admitted to the hopsital. My

enzymes

> were over 2000 and birublen was 20. Everyday they were increasing on the

5th.

> day I had a liver scan and biopsy which had to be done through the

jugular

> vein because of low platelets. I am not sure what my ANA was but I was

> diagnosed with Autoimmune Hepatitis. After 14 days I was released from

the

> hospital and put on 30 Predisone and 150 immuran and Aticall. I also have

> gallstones which my Dr. says is not a problem now. I am a diabetic and

the

> predisone sent my sugar through the room I take 80 unites of insulin in

the

> morning and 10 at night. My doctor took me off Predisone a month ago and

now

> I am having more nausea and weak. I am not due to see my doctor until

were

> 3 times higher than normal.

> Thanks for all the information,

>

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

November 1, 2000

Hi Bethany....

I just saw your post and hope to see more from you....I am here because my

son who just turned 18 has AIH...plus PSC...another liver auto-immune

disease.. He also has Crohns and Rhuematoid Arthritis....this all started

when he was 9 yrs old...It has been a bumpy road....

Are you in HS or at college...Tyler, my son, is a senior in HS...

What kind of doctors are you seeing...Ask as many questions as you

want...there are plenty of people here to help....

Welcome to our group.....but sorry that you have to be here...]

Luanne Ty's mom

November 16, 2000

,

So sorry we all had to meet under these circumstances. Any time you

need a question answered or just an ear to listen this is the place to

be. You are going to meet some really wonderful people.

We can all relate to being tired. Listen to your body and try to rest

whenever possible. It isn't always easy, I am 34 with two girls (8 & 5)

and a husband who is always on the go, so time for me is very limited.

It may seem very frightening now but remember to think positive and take

care of yourself.

Joan Claffey

NJ

ian1912@... wrote:

>

> Hi

> I just found out I have AIH 2 weeks ago. It has been very scary. I

> had my liver biopsy last week. I have been on a high dose of steriods

> for a week now and am waitng to see what my bloodwork says for this

> week. I hope a get a bit of my energy back. It is hard being young

> and so tired. I am glad I found this site. It really helps to talk

> about it. If anyone has sudjestions or just want to talk I would be

> glad to answer.

>

November 16, 2000

Hi ! How many mg's are you on? My fatigue usually goes away within a

week or 2 when I start on the Pred. I work 60 + hour weeks & have two

teenagers, only occasionally tired now. Good Luck,

>From: ian1912@...

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>Hi

>I just found out I have AIH 2 weeks ago. It has been very scary. I

>had my liver biopsy last week. I have been on a high dose of steriods

>for a week now and am waitng to see what my bloodwork says for this

>week. I hope a get a bit of my energy back. It is hard being young

>and so tired. I am glad I found this site. It really helps to talk

>about it. If anyone has sudjestions or just want to talk I would be

>glad to answer.

>

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November 16, 2000

Hi Joan,

Thanks for writting back. It has all been pretty overwhemling. We don't have

children. I asked the doctor about it and she said it will have to be highly

supervised by her if we decide to. I think once I get over the shock I will

feel a bit better. It happened very fast. It really made me think about

things when my doctor told me that my liver was failing. I know I need to

live life more and worry less. I just wish sometimes my parents were still

around for support. My husband seems like he has blinders on now. I guess

because he is in shock too. I guess that is why I am so glad to find this

post to talk. Thanks again for listening.

November 16, 2000

Hi ,

I have been on 60 ml a day for a week. I just went down to 40 today. I hope I

can get more energy soon. I still need to rest alot. I was very ill last

week.

November 17, 2000

,

I have a wonderful husband but he seems to just deny things that are happening. I think when things really get bad, then he will come around.

December 30, 2000

In a message dated 12/30/00 2:34:43 PM Eastern Standard Time,

scbaldwin@... writes:

<<

in OK

>>

Hi, I just recently joined too. I have chronc symptoms and have been ill for

several months. This is what I've done so far:

Got all the metal and amalgam out of my mouth safely(wholistic dentist)

Don't take anything with antibiotics in it (most meat now)

Bought stuff to heal the gut, cuz more than likely if your son is chronic he

has leaky gut. I bought Perma-Clear by Thorne Research, and I just started

taking it today and I swear felt a bit different. You should look up stuff

on leaky gut syndrome on the net and try to find some L-glutamine to give to

him a half hour before eating. You need to repair the intestines as well as

kill the yeast.

I'm also taking SF722 and Undecyn by Thorne to kill the yeast.

Dieting for two weeks now. No sugar, wheat, dairy, vinegars, trying hard not

to eat carbs minus the brown rice occasionally. I'm suspect of Oats and Pau

D'arco as those are known to aggravate the gut.

I think I got sick (as bad as I am) mainly from overuse of Ibuprofen and from

antibiotics cuz I had to take them when I was going to the dentist. Then I

had a bad dentist who removed my silver fillings wrong and that aggravates

leaky gut and candida cuz it becomes mercury poisoning.

Luckily I'm near clear of all metals in my system, barring a bit of aluminum

and that's cuz I still cook in teflon stuff, but am slowly replacing.

Try to cook in pyrex if you can.

I'm also taking E, C (on the hour), eating raw garlic cloves.

But I'm pretty bad off, as I am even on disability for this, but the docs I

went to said it was anxiety. I knew it wasn't, and the drugs for anxiety

only made me worse. I persisted til I found a wholistic doctor that found my

problem.

Tough gig, but I'll get over it and you will too but you have to do a lot

yourself.

Nastasya

December 30, 2000

In a message dated 12/30/00 5:35:16 PM Eastern Standard Time,

scbaldwin@... writes:

<< So, I know when his yeast is acting up. I will talk to one of his

doctors about checking this out. He has bad teeth, so many fillings and

caps... we go back to dentist next month. I know this list is going to be a

great help. Thank you. in OK >>

Just remember that unless you go to a wholistic doc or dentist, they will

tell you you are crazy if you ask about this. If they do, they aren't cool.

Nastasya

December 30, 2000

I just recieved info on a clinic in NV that could help your son. In a sence

they are expensive, unless you look at what you could spend on treating

symptoms,a nd antibiotics. these people in awaya re acheap. it's all in how

you look at it. anyway go tot his site

www.centurywellness.com

also I am reading a book that might help your son

What your doctor may not tell you about Fibermyalgia by Dr. R St. Amand

MD

also told that this is a good book

The Doctors guide to CFS ( spelled out)

S Bell

-------

It's not that life's too short, it's that we're dead so long.

New to group

Hello, I am new to the group. I have mainly joined to get input and

support on where and what is the best to get for chronic candidiasis. My

son was diagnosed with this three years ago, as we could never get him well.

Thank God we found a doctor that was studying about this, and made the

discovery. Since that time, I now know when his yeast is growing, he gets

fever blisters, his behavior is just out of control, he won't sleep. I know

this time it has come from all the Christmas candy and etc. When he

begins to be like this, I will call this doctor, and he will prescribe

Diflucan. Well, due to the weather, the doctor was out, a new nurse was not

willing to just call it in. So we waited three days, which caused my son to

start the coughing, all which will lead to bronchial problems. We did get

the Difucan, but I was looking on the internet for other solutions. He is

10 years old, and weighs about 50 pounds (he's a tiny guy). He has been

through so much already, medically, and I want to help him with this battle.

Keeping candy and breads away from him is only possible if he's locked up in

a closet or something. He will sneak and hoard items, and we never know he

gets them, plus the *support* of school, day care and family.

So, I appreciate any input. I have found a couple of sites that look

promising, and any that you can suggest will be greatly apprciated. Happy

New Year.

in OK

December 30, 2000

thank you, will check this out...

in OK

New to groupHello, I am new to the group. I have mainly joined to get input andsupport on where and what is the best to get for chronic candidiasis. Myson was diagnosed with this three years ago, as we could never get him well.Thank God we found a doctor that was studying about this, and made thediscovery. Since that time, I now know when his yeast is growing, he getsfever blisters, his behavior is just out of control, he won't sleep. I knowthis time it has come from all the Christmas candy and etc. When hebegins to be like this, I will call this doctor, and he will prescribeDiflucan. Well, due to the weather, the doctor was out, a new nurse was notwilling to just call it in. So we waited three days, which caused my son tostart the coughing, all which will lead to bronchial problems. We did getthe Difucan, but I was looking on the internet for other solutions. He is10 years old, and weighs about 50 pounds (he's a tiny guy). He has beenthrough so much already, medically, and I want to help him with this battle.Keeping candy and breads away from him is only possible if he's locked up ina closet or something. He will sneak and hoard items, and we never know hegets them, plus the *support* of school, day care and family.So, I appreciate any input. I have found a couple of sites that lookpromising, and any that you can suggest will be greatly apprciated. HappyNew Year. in OKSend blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE !

December 30, 2000

You are welcome. also try www.leapallergy.com

-------

It's not that life's too short, it's that we're dead so long.

New to group

Hello, I am new to the group. I have mainly joined to get input and

support on where and what is the best to get for chronic candidiasis. My

son was diagnosed with this three years ago, as we could never get him

well.

Thank God we found a doctor that was studying about this, and made the

discovery. Since that time, I now know when his yeast is growing, he gets

fever blisters, his behavior is just out of control, he won't sleep. I

know

this time it has come from all the Christmas candy and etc. When he

begins to be like this, I will call this doctor, and he will prescribe

Diflucan. Well, due to the weather, the doctor was out, a new nurse was

not

willing to just call it in. So we waited three days, which caused my son

to

start the coughing, all which will lead to bronchial problems. We did

get

the Difucan, but I was looking on the internet for other solutions. He

is

10 years old, and weighs about 50 pounds (he's a tiny guy). He has been

through so much already, medically, and I want to help him with this

battle.

Keeping candy and breads away from him is only possible if he's locked up

in

a closet or something. He will sneak and hoard items, and we never know

he

gets them, plus the *support* of school, day care and family.

So, I appreciate any input. I have found a couple of sites that look

promising, and any that you can suggest will be greatly apprciated.

Happy

New Year.

in OK

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December 30, 2000

,

Your son has symptoms of mercury (and probably other heavy metal) poisoning, probably vaccine induced. See if your doctor will do a hair test for heavy metal analysis and put your son on a chelation protocol. Once the metals are gone, his candida will not control his life and behavior anymore. If he has amalgam fillings, they will have to come out first.

Kathy

New to group

Hello, I am new to the group. I have mainly joined to get input and support on where and what is the best to get for chronic candidiasis. My son was diagnosed with this three years ago, as we could never get him well. Thank God we found a doctor that was studying about this, and made the discovery. Since that time, I now know when his yeast is growing, he gets fever blisters, his behavior is just out of control, he won't sleep. I know this time it has come from all the Christmas candy and etc. When he begins to be like this, I will call this doctor, and he will prescribe Diflucan. Well, due to the weather, the doctor was out, a new nurse was not willing to just call it in. So we waited three days, which caused my son to start the coughing, all which will lead to bronchial problems. We did get the Difucan, but I was looking on the internet for other solutions. He is 10 years old, and weighs about 50 pounds (he's a tiny guy). He has been through so much already, medically, and I want to help him with this battle. Keeping candy and breads away from him is only possible if he's locked up in a closet or something. He will sneak and hoard items, and we never know he gets them, plus the *support* of school, day care and family.

So, I appreciate any input. I have found a couple of sites that look promising, and any that you can suggest will be greatly apprciated. Happy New Year.

in OK

Send blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE !

December 30, 2000

Have the fillings removed before or after the test. He had an immunology test done at the same time as genetic testing, and they said there was nothing abnormal (that day, I guess). He has had such a tough life, he is adopted, and he was a failure to thrive baby. He had ear infections so bad, several sets of tubes, and his ears drained so bad, his eardrums were eaten out. Had those replaced, had adenoids removed 3x (yes, they grew back), and his tonsils. His tonsils had some kind of bacteria in them that would have never been touched by antibiotics. Allergic to penicillin. Now, he has been diagnosed with Velo Cardio Facial Syndrome, and they have found two heart murmurs that we didn't know he had. So, I know when his yeast is acting up. I will talk to one of his doctors about checking this out. He has bad teeth, so many fillings and caps... we go back to dentist next month. I know this list is going to be a great help. Thank you. in OK

New to group

Hello, I am new to the group. I have mainly joined to get input and support on where and what is the best to get for chronic candidiasis. My son was diagnosed with this three years ago, as we could never get him well. Thank God we found a doctor that was studying about this, and made the discovery. Since that time, I now know when his yeast is growing, he gets fever blisters, his behavior is just out of control, he won't sleep. I know this time it has come from all the Christmas candy and etc. When he begins to be like this, I will call this doctor, and he will prescribe Diflucan. Well, due to the weather, the doctor was out, a new nurse was not willing to just call it in. So we waited three days, which caused my son to start the coughing, all which will lead to bronchial problems. We did get the Difucan, but I was looking on the internet for other solutions. He is 10 years old, and weighs about 50 pounds (he's a tiny guy). He has been through so much already, medically, and I want to help him with this battle. Keeping candy and breads away from him is only possible if he's locked up in a closet or something. He will sneak and hoard items, and we never know he gets them, plus the *support* of school, day care and family.

So, I appreciate any input. I have found a couple of sites that look promising, and any that you can suggest will be greatly apprciated. Happy New Year.

in OK

Send blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE !

December 30, 2000

Wow, poor kid has gone through a lot. Sounds like his immune system has taken a beating. If he undergoes chelation for metals, his mercury fillings will have to come out first. Doesn't matter if he has them in for testing. If you need more info on chelation e-mail me at liamm@... .

Kathy

Re: New to group

Have the fillings removed before or after the test. He had an immunology test done at the same time as genetic testing, and they said there was nothing abnormal (that day, I guess). He has had such a tough life, he is adopted, and he was a failure to thrive baby. He had ear infections so bad, several sets of tubes, and his ears drained so bad, his eardrums were eaten out. Had those replaced, had adenoids removed 3x (yes, they grew back), and his tonsils. His tonsils had some kind of bacteria in them that would have never been touched by antibiotics. Allergic to penicillin. Now, he has been diagnosed with Velo Cardio Facial Syndrome, and they have found two heart murmurs that we didn't know he had. So, I know when his yeast is acting up. I will talk to one of his doctors about checking this out. He has bad teeth, so many fillings and caps... we go back to dentist next month. I know this list is going to be a great help. Thank you. in OK

New to group

Hello, I am new to the group. I have mainly joined to get input and support on where and what is the best to get for chronic candidiasis. My son was diagnosed with this three years ago, as we could never get him well. Thank God we found a doctor that was studying about this, and made the discovery. Since that time, I now know when his yeast is growing, he gets fever blisters, his behavior is just out of control, he won't sleep. I know this time it has come from all the Christmas candy and etc. When he begins to be like this, I will call this doctor, and he will prescribe Diflucan. Well, due to the weather, the doctor was out, a new nurse was not willing to just call it in. So we waited three days, which caused my son to start the coughing, all which will lead to bronchial problems. We did get the Difucan, but I was looking on the internet for other solutions. He is 10 years old, and weighs about 50 pounds (he's a tiny guy). He has been through so much already, medically, and I want to help him with this battle. Keeping candy and breads away from him is only possible if he's locked up in a closet or something. He will sneak and hoard items, and we never know he gets them, plus the *support* of school, day care and family.

So, I appreciate any input. I have found a couple of sites that look promising, and any that you can suggest will be greatly apprciated. Happy New Year.

in OK

Send blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE !

December 30, 2000

OK, I know of at least one wholistic doctor in OKC...but where do you find a dentist? They don't particularly advertise, do they? You would just have to ask, right?

in OK

Re: New to group

In a message dated 12/30/00 2:34:43 PM Eastern Standard Time, scbaldwin@... writes:<< in OK >>Hi, I just recently joined too. I have chronc symptoms and have been ill for several months. This is what I've done so far:Got all the metal and amalgam out of my mouth safely(wholistic dentist)Don't take anything with antibiotics in it (most meat now)Bought stuff to heal the gut, cuz more than likely if your son is chronic he has leaky gut. I bought Perma-Clear by Thorne Research, and I just started taking it today and I swear felt a bit different. You should look up stuff on leaky gut syndrome on the net and try to find some L-glutamine to give to him a half hour before eating. You need to repair the intestines as well as kill the yeast.I'm also taking SF722 and Undecyn by Thorne to kill the yeast.Dieting for two weeks now. No sugar, wheat, dairy, vinegars, trying hard not to eat carbs minus the brown rice occasionally. I'm suspect of Oats and Pau D'arco as those are known to aggravate the gut.I think I got sick (as bad as I am) mainly from overuse of Ibuprofen and from antibiotics cuz I had to take them when I was going to the dentist. Then I had a bad dentist who removed my silver fillings wrong and that aggravates leaky gut and candida cuz it becomes mercury poisoning.Luckily I'm near clear of all metals in my system, barring a bit of aluminum and that's cuz I still cook in teflon stuff, but am slowly replacing.Try to cook in pyrex if you can.I'm also taking E, C (on the hour), eating raw garlic cloves.But I'm pretty bad off, as I am even on disability for this, but the docs I went to said it was anxiety. I knew it wasn't, and the drugs for anxiety only made me worse. I persisted til I found a wholistic doctor that found my problem.Tough gig, but I'll get over it and you will too but you have to do a lot yourself.NastasyaSend blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE !

December 30, 2000

If you have your fillings removbed what do you replace them with?