Re: Digest Number 2585

[Guest guest]

In a message dated 11/8/02 6:31:45 AM Pacific Standard Time, writes:

Yes, there are people with mild AIH who are NOT treated with prednisone and/or imuran and this on doctor's orders.

Agreed, from what I read, there are people with mild cases of AIH who need only to be carefully monitored. However, I worry very much about the people who, over the past couple of years, have written the group thinking they can ignore their doctor's recommendations for treatment because they "don't believe in chemicals" or something of the sort, NOT because their doctor says that their case is mild enough to just monitor. One woman intended to rely fasting and spring water, as I recall. Those innocent, hopeful people turn up with some regularity, and I fear for them. Overall, the statistics for mortality with untreated AIH over a five-year-period are abysmal. (I suspect that, statistically, the figures will improve simply because doctors now are more able to diagnose mild cases that, like yours, require only careful monitoring.)

Don't you think that others, less fortunate in their diagnosis than you, should be warned of the need to follow prescribed treatment?

Harper

[Guest guest]

Well said, Harper.

> In a message dated 11/8/02 6:31:45 AM Pacific Standard Time,

> @y... writes:

>

>

> > Yes, there are people with mild AIH who are NOT treated with

> >

>

> Agreed, from what I read, there are people with mild cases of AIH

who need

> only to be carefully monitored. However, I worry very much about

the people

> who, over the past couple of years, have written the group thinking

they can

> ignore their doctor's recommendations for treatment because

they " don't

> believe in chemicals " or something of the sort, NOT because their

doctor says

> that their case is mild enough to just monitor. One woman intended

to rely

> fasting and spring water, as I recall. Those innocent, hopeful

people turn

> up with some regularity, and I fear for them. Overall, the

statistics for

> mortality with untreated AIH over a five-year-period are abysmal.

(I suspect

> that, statistically, the figures will improve simply because

doctors now are

> more able to diagnose mild cases that, like yours, require only

careful

> monitoring.)

>

> Don't you think that others, less fortunate in their diagnosis than

you,

> should be warned of the need to follow prescribed treatment?

> Harper

[Guest guest]

Harper, of course people should be warned of the need to follow

prescribed treatment and I fully agree with you that AIH is not some

disorder that people can handle without expert advice. But it's the

expert advice that has been baffling me for most of the time since I

have been diagnosed. By now I have visited, armed with my pages of

LFT's and biopsy results, four different hepatology centers – all of

them staffed by experts, doctors who claim to be experts on liver

disease and who also research and publish their results in peer-

review journals. Admittedly, after the first two, I continued out of

curiosity and also because my job got me to the various university

clinics where these centers are. There is simply no agreement on

treatment strategies, end points, prognosis, the lot ... regarding

mild AIH. What keeps me sane (most of the time) is that my treatment

of non-prednisone has not only brought my LFTs down to normal within

five months but has also kept it there for the last 15 months

(mentioning that I do take milk thistle will send some people up into

a frenzy – despite a long list of interesting clinical studies). As

for the statistics: the ones used in the AASLD article I quoted

earlier are from 1972, 1973, 1977... I remember one hepatologists

telling me how hard it was to get the figures as they can only rely

on patients, i.e. people who at one time or another had been referred

to their center. So, statistics only include those who have come to

the notice of hepatologists, not all AIH cases, not nearly.

Considering this, figures such as these may be viewed with

caution: „relapse after drug withdrawal occurs in 20 to 87% of

patients within one year [...]13% [...] develop drug-related

complications that prematurely terminate therapy [...] indeed, only

17% of treated patients experience a complete and sustained

resolution of their disease for at least five years " (from Czaja:

Autoimmune Liver Diseases, 1998, Elsevier Science, chapter 27:

Treatment of Autoimmune Hepatitis – this time the statistics are from

the 1980s and Czaja's own cases).

Believe me, I would dearly love to rely on my doctor's, any doctor's

advice, resting assured that they know best. They do not, they

cannot, despite the fact that many try hard. But AIH is rare, more

studies are badly needed but not sufficiently funded. That is why

groups such as this one are so important.

One hepatologist suggested to me that people with AIH should get

together as a pressure group demanding more research – well, he is

young...

I'll better stop getting myself into a rage.

Have a good day, there is a storm blowing outside my window tonight.

Take care.

Sophie

[Guest guest]

Harper, how much I totally agree with you. I am one who abhors medications....just HATE them. However, they DO give us life. Indeed, as those with breast cancer struggle with their chemo treatments, so they also survive! My own mother is one. Yes, she died, BUT, her cancer was SO aggressive, that her treatments gave us several extra years with her that she would not have had if she had not taken the treatments. I was grateful for that time. I am grateful for those who gave their lives from early trials with Herceptin, for those trials were given in the hopes of finding a cure for their cancers. We all know there is no cure for cancer, yet we DO have hope. Just like with AIH...there is hope.

Do I like all the hassles with the sides and meds....no I don't. But I am willing to put up with them so that my grandchildren will KNOW me. I owe them that!

debby

Re: [ ] Digest Number 2585

In a message dated 11/8/02 6:31:45 AM Pacific Standard Time, writes:

Yes, there are people with mild AIH who are NOT treated with prednisone and/or imuran and this on doctor's orders. Agreed, from what I read, there are people with mild cases of AIH who need only to be carefully monitored. However, I worry very much about the people who, over the past couple of years, have written the group thinking they can ignore their doctor's recommendations for treatment because they "don't believe in chemicals" or something of the sort, NOT because their doctor says that their case is mild enough to just monitor. One woman intended to rely fasting and spring water, as I recall. Those innocent, hopeful people turn up with some regularity, and I fear for them. Overall, the statistics for mortality with untreated AIH over a five-year-period are abysmal. (I suspect that, statistically, the figures will improve simply because doctors now are more able to diagnose mild cases that, like yours, require only careful monitoring.) Don't you think that others, less fortunate in their diagnosis than you, should be warned of the need to follow prescribed treatment? Harper

[Guest guest]

In a message dated 4/28/2004 3:02:44 PM Eastern Daylight Time,

writes:

Date: Tue, 27 Apr 2004 23:20:39 -0400

From: Allan Balliett <igg@...>

Subject: Primal Defense and nursing infants

I've heard from a couple of women that their baby gets blood in its

stool when they take Primal Defense.

I've heard stories about Primal Defence's micro-flora getting into

people's bloodstreams, also.

I'm wondering if this is well known or if I'm hearing form people who

are drawing the wrong conclusions.

thanks

_Allan

..

..

>>>> Allan

And, what does Primal Defense's developer, Dr , have to say about the

above comments?

mjh

http://foxhillfarm.us/FireBasil/

[Guest guest]

In a message dated 4/28/2004 3:02:44 PM Eastern Daylight Time,

writes:

From: " " <jc137@...>

Subject: NYC Doctors?

Hi list,

I've asked this before, but I'm still looking for an MD or DO primary

caregiver AND a ob/gyn in New York City (Manhattan or Brooklyn). It would

be great if they were NT friendly, but competant and non-drug happy will

do...I only go to the dr. once a year (knock on wood) and I have really good

health insurance.

You can email me off list at jc137@...

TIA,

..

..

>>>>>

Braverman, MD, Madison Ave., NYC

www.pathmed.com

mjh

http://foxhillfarm.us/FireBasil/

[Guest guest]

In a message dated 9/7/2005 6:43:02 AM Eastern Daylight Time,

writes:

> Does everyone think it's ok to let a adult surgeon put in a port on Britt?

>

> She is 14 almost 15, but she is only 97 lbs and 5'3 inches tall. He said we

>

> will be able to see it on her chest and she wasn't too happy about that at

> all.

>

>

Janet,

Are they using a low profile port? You can barely see Ashton's. They put it

in the chest right by the crease of her armpit. You really can't see it much.

It is even less noticeable now that she has gained some weight. We did have a

ped. surgeon put the port in. Who does it for the ped. cancer patients in your

area? This guy was the one that does them.

L

Mom to Ashton 12 CVID, Asthma, Dyslexia & Marina 9 Asthma

[Guest guest]

In a message dated 9/7/2005 11:35:27 A.M. Eastern Daylight Time,

Nanashmar@... writes:

Are they using a low profile port?

I know nothing about ports. What is a low profile port?

Janet, Mom to Brittany, CVID, age 14