Re: Digest Number 2253

[Guest guest]

In a message dated 3/14/02 1:44:13 PM Eastern Standard Time,

writes:

,

So sorry that you have been having so many probelms with your son's school. I

just wanted to write and say that in our school district doctors excuse does

not count against the child as a day off. Since you deal with doctors so much

will your family doctor give you excuses for e without having to see him

every time? This may be a soultion to at least a part of whats going on with

this district. Good luck with everything. Barb

> One thing I don't understand is that when a child is out sick, why do they

> have to have a dr.'s note every time? 1.sometimes they are sick but not

> sick

> enough to take them to the dr. 2. Who has the money to take their child to

> the dr every time they are sick? Most people don' t have insurance because

> it

> cost to much and they make to much money to get Medicaid. Not to mention

> Medicaid doesn't like it when you take your child in for a common cold.

>

>

[Guest guest]

<< Message: 6

Date: Tue, 30 Apr 2002 19:08:32 EDT

From: Sunny5348@...

Subject: Re: Sunny...WOULD LOVE TO GET INTO SITE...

I go the Mt. Sinai after being evaluated at several university hospitals. I

chose Mt. Sinai because of their reputation. As stated before, the doctor

based the diagnosis of AIH because my LFTs were always slightly elevated

since teenage years diagnosed with mono/hep. Because my LFTs are not

significantly elevated, he doesn't see a need to perform a biopsy right now

because it wouldn't show that much inflammation. Also, I had an EGD which

showed portal hypertension without varices which was great news! Because

there is a high risk of cancer, he would like the CAT scans performed every

six months. Blood work, due to low platelets (does anyone else have low

platelets?) and elevated LFTs are to be done every three months. I get the

usual CBC and chemistry profile with liver function tests along with others.

He said I do not meet the criteria for a transplant even though I have

cirrhosis; maybe in the future but hope for the best. He said, " Whatever

you're doing, keep doing it! " I am not any medication right now except

taking Milk Thistle, Vitamin C, calcium, zinc, magnesium and Vitamin D.

Sometimes I try to remember the selenium. Oh, yes--I also take a beta

blocker for an arrhythmia. Other than that, I am basically healthy! ha!

ha!

Have to have a sense of humor!

Would love hearing from the group. Any insight would be helpful.

Sunny

>>

Hi Sunny,

I too have very low platelets. It was one of the triggers to have my

original PCP to send me to a rhuemetologist. My enzymes were only slightly

elevated and actually have been pretty stable the last 5 years. I'm

surprised they aren't doing a biopsy - that really seems to help with the

diagnosis. I didn't realize that they could tell a cirrhotic liver without

one. Best of luck.

[Guest guest]

Thank you for the reply. I am trusting my physician in Mt. Sinai right now

after being to soooo many doctors regarding this. Mt. Sinai has been rated

at the top of university hospitals with their liver disease program. When I

called U of P, I asked them who was the best regarding liver transplants,

etc. and they told me Pittsburgh was first and Mt. Sinai was second. So, as

you said, " I hope, " I will go with his recommendations, especially with a

history of low platelets with risk of internal bleeding. I also was very

happy to hear that I did not have any esophageal varices! Good news! The

CAT scan showed showed " nodular, " which I brought the films to the other

university hospitals for which they also stated consistent with fibrosis. My

physicians here in New Jersey also told me that with my history it is most

likely Autoimmune Hepatitis. When the physician at Mt. Sinai confirmed this

fact, my family and I thought it was the best possible way to go. I

appreciate your input and knowledge and will tell my hepatologist what you

told me and see what happens.

[Guest guest]

Sunny, I am confused. You have cirrhosis and your doctor doesn't think your

liver would show much inflammation? Is that because you have so much

cirrhosis? I forget if you said how your cirrhosis was diagnosed.

Cirrhosis is scarring beyond inflammation. Usually a hepatologist will want

to treat an AIH patient with cirrhosis with something besides OTC meds. And

lft's are no guarantee of what's going on with your liver. I am amazed by

what your hepatologist says, which is so contrary to everything I've ever

heard or read. But he is the expert - I hope. You can still request a

biopsy, and you could request a second opinion of the results. I am like

you - the healthiest sick person I know! And depend highly on my sense of

humor.

> As stated before, the doctor based the diagnosis of AIH because my LFTs

were always slightly elevated

> since teenage years diagnosed with mono/hep. Because my LFTs are not

> significantly elevated, he doesn't see a need to perform a biopsy right

now

> because it wouldn't show that much inflammation. Also, I had an EGD which

> showed portal hypertension without varices which was great news!

> He said I do not meet the criteria for a transplant even though I have

> cirrhosis; maybe in the future but hope for the best. He said, " Whatever

> you're doing, keep doing it! " I am not any medication right now except

> taking Milk Thistle, Vitamin C, calcium, zinc, magnesium and Vitamin D.

[Guest guest]

You wrote, lft's are no guarantee of what's going on with your liver--

Could you please tell me what that means? If I am understanding correctly, are yousaying that even though my LFT's are normal that I can still be sick? I don't understand. I really would appreciate hearing from somone on this....thanks....debby

Re: [ ] Digest Number 2253

Sunny, I am confused. You have cirrhosis and your doctor doesn't think yourliver would show much inflammation? Is that because you have so muchcirrhosis? I forget if you said how your cirrhosis was diagnosed.Cirrhosis is scarring beyond inflammation. Usually a hepatologist will wantto treat an AIH patient with cirrhosis with something besides OTC meds. Andlft's are no guarantee of what's going on with your liver. I am amazed bywhat your hepatologist says, which is so contrary to everything I've everheard or read. But he is the expert - I hope. You can still request abiopsy, and you could request a second opinion of the results. I am likeyou - the healthiest sick person I know! And depend highly on my sense ofhumor.> As stated before, the doctor based the diagnosis of AIH because my LFTswere always slightly elevated> since teenage years diagnosed with mono/hep. Because my LFTs are not> significantly elevated, he doesn't see a need to perform a biopsy rightnow> because it wouldn't show that much inflammation. Also, I had an EGD which> showed portal hypertension without varices which was great news!> He said I do not meet the criteria for a transplant even though I have> cirrhosis; maybe in the future but hope for the best. He said, "Whatever> you're doing, keep doing it!" I am not any medication right now except> taking Milk Thistle, Vitamin C, calcium, zinc, magnesium and Vitamin D.

[Guest guest]

Good morning. I was reading your post and noticed you mentioned fibrosis. My biopsy says I have fibrosis. Can you or anyone shed any light on this? When I had my visit with the liver specialist it was the day before Thanksgiving and they had to call him in to see me. We have to go over 350 miles to see him. I had just had surgery and a liver biopsy two weeks before. My surgeon told me I had an appointment with him, but he had no one in his office that day. So-- I didnt ask a lot of questions that I have now. I am supposed to go back and see him soon.

I enjoy everyones gardening comments. I love the outdoors also and the beautiful spring flowers.. I especially like to bird watch..

Take care and thanks for taking the time to read this.

Lyn in Arkansas

Sunny5348@... wrote: Thank you for the reply. I am trusting my physician in Mt. Sinai right now after being to soooo many doctors regarding this. Mt. Sinai has been rated at the top of university hospitals with their liver disease program. When I called U of P, I asked them who was the best regarding liver transplants, etc. and they told me Pittsburgh was first and Mt. Sinai was second. So, as you said, "I hope," I will go with his recommendations, especially with a history of low platelets with risk of internal bleeding. I also was very happy to hear that I did not have any esophageal varices! Good news! The CAT scan showed showed "nodular," which I brought the films to the other university hospitals for which they also stated consistent with fibrosis. My physicians here in New Jersey also told me that with my history it is most likely Autoimmune Hepatitis. When the physician at Mt. Sinai confirmed this fact, my family and I thought it was the best possible way to go. I appreciate your input and knowledge and will tell my hepatologist what you told me and see what happens.

[Guest guest]

I'm sorry you must have my letter mixed up.I dont even know what fibrosis

is.I have bile duct cancer. [ducts to the liver]I wish you the

best of health and a long happy life.

Dave

>From: Stidham <lyn_ar_1202@...>

>Reply-

>

>Subject: Re: [ ] Digest Number 2253

>Date: Thu, 2 May 2002 03:40:24 -0700 (PDT)

>

>

> Good morning.

>I was reading your post and noticed you mentioned fibrosis. My biopsy says

>I have fibrosis. Can you or anyone shed any light on this? When I had my

>visit with the liver specialist it was the day before Thanksgiving and they

>had to call him in to see me. We have to go over 350 miles to see him. I

>had just had surgery and a liver biopsy two weeks before. My surgeon told

>me I had an appointment with him, but he had no one in his office that day.

>So-- I didnt ask a lot of questions that I have now. I am supposed to go

>back and see him soon.

>I enjoy everyones gardening comments. I love the outdoors also and the

>beautiful spring flowers.. I especially like to bird watch..

>Take care and thanks for taking the time to read this.

>Lyn in Arkansas

> Sunny5348@... wrote: Thank you for the reply. I am trusting my

>physician in Mt. Sinai right now

>after being to soooo many doctors regarding this. Mt. Sinai has been rated

>at the top of university hospitals with their liver disease program. When

>I

>called U of P, I asked them who was the best regarding liver transplants,

>etc. and they told me Pittsburgh was first and Mt. Sinai was second. So,

>as

>you said, " I hope, " I will go with his recommendations, especially with a

>history of low platelets with risk of internal bleeding. I also was very

>happy to hear that I did not have any esophageal varices! Good news! The

>CAT scan showed showed " nodular, " which I brought the films to the other

>university hospitals for which they also stated consistent with fibrosis.

>My

>physicians here in New Jersey also told me that with my history it is most

>likely Autoimmune Hepatitis. When the physician at Mt. Sinai confirmed

>this

>fact, my family and I thought it was the best possible way to go. I

>appreciate your input and knowledge and will tell my hepatologist what you

>told me and see what happens.

>

>

[Guest guest]

Message: 1

Date: Tue, 7 May 2002 09:53:16 -0500

From: " The Kramer Family " <nmkramer@...>

Subject: Re: Nighttime dosing

> Could those of you who chelate your children during the night please share

> some of the methods you use to get chelating agents down in the wee hours?

Do

> you wake your child up? Or try to get something down while they're asleep?

> Any hints would be greatly appreciated. Don't know if this matters, but

we'll

> be using ALA.

I find I don't have to wake my 5 year old.

I try to dissolve 25 mg of DMSA + 25 mg of ALA in a small amount of juice by

shaking the contents vigorously in a tightly sealed jar (I use an empty

urine specimen container). I then draw the contents into a thick syringe

that can take at least 5 ml. I then squirt the contents into my boy's mouth

while he is asleep and make sure he swallows it. He never wakes up,

although he can cough a little bit after he has swallowed. While this

method may not mean every last bit of the chelators is ingested, I hope he

gets a decent and adequate dose.

I also found that if I can stay up till 10.30 pm then I can give him a dose

before going to bed and then give him another at 2.30 am and then at 6.30 am

when he and I have already woken up. Thus, I only have to get up once at

2.30 am or thereabouts.

I have to say that I doubt whether I could have done this until recently as

my son rarely slept through the night and I dared not risk waking him to

give him chelators.

Hope this helps.

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