info

[Guest guest]

Keath,

Great idea! Thanks for looking out for all of us.

Molly

> Hi all. FYI

>

> I sent a note to RR re. his website and how it could help us post-

op types.

> Both of our notes below.

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~```

> Keath L Marx, DVM

> Blacksburg, VA USA

> drkeath@m...

> 334/235/165 12/5/01

>

>

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~

> Great idea.

>

> I'll put something together right away.

>

> RR

>

> Post-Op Information

>

>

> How about adding a tab to your website for Post-Op people. I am

having

> difficulty finding out exactly what to do post op. I know there is

stuff

> in the patient manual but it is 47 pages long with most of it not

> applicable. It would make it easier to remind ourselves of proper

things

> to do if it was easily found.

>

> I remember some of the things I was told but could not find a

concise

> listing. For example, I seem to remember that I was supposed to

fill out

> the follow-up form at 3, 6, and 12 month period post-op. Also to

have a

> full blown blood test at 1 year.

>

> I am on the post-op MGB list and questions come up all the time that

> could be answered easily if there was a quick link spot on clos.net

>

> Keath

[Guest guest]

Sounds like spleen to me. But, just guessing. I have had spleen pain before

when I was doing things that seemed to be overworking my immune system. I have

a friend who gets spleen pain when she does co-q-10.

Anyway, that is the location of the spleen, so. . .would seem the first place to

look.

Donna

-----Original Message-----

HI

I just would like to describe a pain I get sometimes.

It is a pain mostly while sitting, or sometimes trying to sleep.

It is more by the bottom rib, straight down from nipple, and proceeds

toward left along bottom rib.

About best description of location I can come up with.

Sometimes just annoying, sort of a burn, hurt, etc.

Thanks

Calvin Dufrene Jr.

[Guest guest]

Sounds like spleen to me. But, just guessing. I have had spleen pain before

when I was doing things that seemed to be overworking my immune system. I have

a friend who gets spleen pain when she does co-q-10.

Anyway, that is the location of the spleen, so. . .would seem the first place to

look.

Donna

-----Original Message-----

HI

I just would like to describe a pain I get sometimes.

It is a pain mostly while sitting, or sometimes trying to sleep.

It is more by the bottom rib, straight down from nipple, and proceeds

toward left along bottom rib.

About best description of location I can come up with.

Sometimes just annoying, sort of a burn, hurt, etc.

Thanks

Calvin Dufrene Jr.

[Guest guest]

Sounds like it could be the pancreas if on the left side. Try drinking

more water for a few days & taking a really good digestive enzyme with

sources from aspergillus.

jim

> HI

> I just would like to describe a pain I get sometimes.

> It is a pain mostly while sitting, or sometimes trying to sleep.

> It is more by the bottom rib, straight down from nipple, and proceeds

> toward left along bottom rib.

> About best description of location I can come up with.

> Sometimes just annoying, sort of a burn, hurt, etc.

> Thanks

>

> Calvin Dufrene Jr.

>

--

Light travels faster than sound. This is why some people seem bright

until you hear them speak. --Lou Rubinacci

jlambert@... http://www.entrance.to/madscience

http://www.entrance.to/poetry

[Guest guest]

Sounds like it could be the pancreas if on the left side. Try drinking

more water for a few days & taking a really good digestive enzyme with

sources from aspergillus.

jim

> HI

> I just would like to describe a pain I get sometimes.

> It is a pain mostly while sitting, or sometimes trying to sleep.

> It is more by the bottom rib, straight down from nipple, and proceeds

> toward left along bottom rib.

> About best description of location I can come up with.

> Sometimes just annoying, sort of a burn, hurt, etc.

> Thanks

>

> Calvin Dufrene Jr.

>

--

Light travels faster than sound. This is why some people seem bright

until you hear them speak. --Lou Rubinacci

jlambert@... http://www.entrance.to/madscience

http://www.entrance.to/poetry

[Guest guest]

Hi Andy

I live in the Niagara Area. Is the IBI therapy helping lots? Tell me some of

the progress made with Hannah since the IBI. The waiting list is so long

here and I wonder if Adonia will ever be seen. How old was Hannah when you

started? Have you invested in any private therapy. For us there is not much

around. I have invested in some private Occupational. I feel it has helped

lots. .

new here

> >

> >

> > Welcome Andy, I have a daughter who is 3.5, who has Autism and it on

a

> waiting list for ABA therapy. At present she is non verbal. Her name is

> Adonia and I live in Canada. yvonne.

> >

> >

> >

[Guest guest]

,

Hannah started IBI last spring. She was the first group in the region to begin

the therapy under the new govt. initiative. She receives 20 hours per week and I

have seen a huge difference in her since she began the sessions last spring. We

have 4 therapists and one psychologist who rotate shifts. It was hard at first

getting used to having a bunch of people in your house all the time but now they

just feel like extended members of our family. It is truely been a God-send. I

don't know what we would have done without it. It is making a huge difference in

Hannah's life and in our lives as a family.

Andy

:0)

mum to Hannah 5.4 (autism dx) 6.9 (seizure disorder) and Meaghan 8.4 (nt)

new here

> >

> >

> > Welcome Andy, I have a daughter who is 3.5, who has Autism and it on

a

> waiting list for ABA therapy. At present she is non verbal. Her name is

> Adonia and I live in Canada. yvonne.

> >

> >

> >

[Guest guest]

Thanks for the info Andy. I have just started my daughter on the pecs

program myself. I hope that the autism Initiative happens for us too.

.

new here

> > >

> > >

> > > Welcome Andy, I have a daughter who is 3.5, who has Autism and

it on

> a

> > waiting list for ABA therapy. At present she is non verbal. Her name

is

> > Adonia and I live in Canada. yvonne.

> > >

> > >

> > >

[Guest guest]

let the dr do the biopsy but ask them to give you something to relax you,. Not all are baad I think some of it depends on the person doing it.

brenda

[Guest guest]

,

My liver biopsy was very easy. One of the easiest test I'm had. They

sedated me with something in my IV. Did it in the hospital bed in a regular

room. I don't remember a thing. I had to wait 4-5 hours after and lay very

still and after labs came back indicating there was no bleeding they let me

go home. I went shopping the next day and don't remember any soreness. They

are not all so difficult. Some of us have had these procedures with minimal

if no pain. Stay positive and try not to worry.

[Guest guest]

Dear Debbie,

Go ahead and do it, you will be Ok. I am

so glad I did it, it was only a minor discomfort to me considering the

information they were able to get. It was well worth it, my life depended on it.

[ ] Info

Dear Debbie from Fl:

Thanks for your info on tremors and " brain

fog. " It is people like you that

give me hope that I can survive for a little while

longer, and maybe even

survive the meds. My diagnosis is not yet

complete, only the biopsy

remains. I have had these symptoms for the past 10

years: autoimmune thyroid

disease, brain fog, itching, elevated liver

enzymes, exhaustion, tremors,

back pain, cirrhosis, fibrosis. No Doctor until

now has been able to help

me.

I finally found a Doctor at the University of

Michigan Hospital

gastroenterology department who has been able to

put everything together and

diagnose AIH. The biopsy that I am having on

23-Apr-02 is just to confirm

the diagnosis.

All the posts about how horrible the liver biopsy was

for them makes me very

apprehensive about even having it done. I am

not good with pain and fear,

especially together and on an operating

table. I am thinking about asking

my Dr to go forward without the biopsy. I am

really perplexed here.

from Michigan

[Guest guest]

Hi ,

not all biopsies are bad. Mine was a piece of cake. I don't know

whether it's the dr. or the person that makes a difference, but I had

no pain whatsoever. The part that hurt the worst was him poking

around my side with his fingers to find a gap between my ribs..lol.

My mother has had 2 liver biopsies, and both of hers have been pain

free, too. She didn't have the same dr. as me, either. So, don't

think the worst when you go in there. Bring a good book, because it's

a l-o-n-g 5 hr. wait afterwards. Good luck to you. Laurie

> Dear Debbie from Fl:

>

> Thanks for your info on tremors and " brain fog. " It is people like

you that

> give me hope that I can survive for a little while longer, and

maybe even

> survive the meds. My diagnosis is not yet complete, only the biopsy

> remains. I have had these symptoms for the past 10 years:

autoimmune thyroid

> disease, brain fog, itching, elevated liver enzymes, exhaustion,

tremors,

> back pain, cirrhosis, fibrosis. No Doctor until now has been able

to help

> me.

>

> I finally found a Doctor at the University of Michigan Hospital

> gastroenterology department who has been able to put everything

together and

> diagnose AIH. The biopsy that I am having on 23-Apr-02 is just to

confirm

> the diagnosis.

>

> All the posts about how horrible the liver biopsy was for them

makes me very

> apprehensive about even having it done. I am not good with pain

and fear,

> especially together and on an operating table. I am thinking about

asking

> my Dr to go forward without the biopsy. I am really perplexed here.

>

> from Michigan

[Guest guest]

And we will continue to triumph! Sunny Kierstyn

In 1990 Americans made 425 million visits to alternative health care

practitioners, while 388 million visits were made to conventional health care

providers. "

from " Focus on Behavioral Health " Magazine, July 199

[Guest guest]

if you can get her on the phone that would be good. Last year she was having some problems and not doing too well at all. She dropped away after that so I don't know. I do know they were hoping to sell their condo and move into another place there. She is the sweetest person and has been sick for many years since childhood. Good luck and I'm ready to drive for you! Wishing you the best trip. Melt

----- Original Message -----

From: Docken

stillsdisease

Thank you ill try that number in Anchorage too see what i come up with,dont feel like intruding on any1 but phone call should be ok i think. d.Canada

[Guest guest]

Caroline,

Check out the research articles at stillsdisease.org. There is some good

information there. That is the only place I have found stuff. Good Luck

Lynn

Info

Does anyone know of any books or helpful literature about AOSD that I

could get hold of? Here in England there is no info at all and few

people have heard of it. I feel totally ignorant as well and would like

to be better informed about this 'thing' that has so affected my life.

[Guest guest]

Caroline,

Tried the UK Chat room but we seemed to manage to miss each other.

I'm a new member - on behalf of my wife Carole who is the sufferer. We also live

in Surrey (Surbiton).

She was diagnosed 4 years ago but like everyone else has had the symptoms much

longer (probably from childhood).

Carole has been really bad this last month - horrendous rash everywhere made

worse by the hot weather, knee, elbow, hands all painful. Was prescribed

'industrial strength' Ibuprofen 4 years ago but the side effects were too bad

and stopped taking them. Only take them now when absolutely necessary.

Doug

ps - Tried the pet ReliefStick (from Petkin) - it's a huge help, especially at

night + It works best if used straight from the 'fridge.

Thanks to whoever suggested it

Info

Does anyone know of any books or helpful literature about AOSD that I

could get hold of? Here in England there is no info at all and few

people have heard of it. I feel totally ignorant as well and would like

to be better informed about this 'thing' that has so affected my life.

[Guest guest]

Hi Doug:

My name is Bob or Old Goat whichever you prefer. I answer to a

lot of names and have been called a lot more, lol! I understand that you are

new to the group and that it is your wife that has Stills? I am the

Secty/Treas of the Foundation and no I am not looking for money, lol! I just

wanted to welcome you to the group and let you know that we have Brochures

available that you can pass out to Relatives and Friends and also to your

Doctors who also don't know to much about Stills. If you will send me your

mailing address including zip code I will send you however many you wish.

This is the only way that we have of getting the information to others about

this Disease! So please let me know how many you want and I will get them in

the mail to you. There is no charge for them! Take care now and I hope that

your wife is PAIN FREE! Love Y'all!

Please send your mailing address to my personal e-mail address that way we

don't clog every ones mail boxes. My e-mail address is oldgoat378@knology

net

WE WILL WIN

Love Y'all

Bob & Carole

Mom & Dad

Panama City, FL

Please visit the Stills Disease Web Site at: www.stillsdisease.org

Politicians are like Diapers... They should be changed often and for the

same reasons!

All outgoing messages are checked by Symantec before being sent

[Guest guest]

What Are the Signs and Symptoms of Hypothyroidism?

Select from the list of symptoms and phase of hypothyroidism or

scroll down the page.

Summary List of Symptoms1

Early Symptoms

Later Symptoms

Secondary Hypothyroidism

Symptoms in Infants and Children

Subclinical Hypothyroidism

Summary List of Symptoms1

In general, the symptoms of hypothyroidism (underactive thyroid) are:

Weight gain Puffy face

Loss or thinning of eyebrows Cold intolerance

Low sex drive Depression

Abdominal bloating Cold hands or feet

Dry or thinning hair Joint or muscle pain

Thickening of the skin Thin, brittle fingernails

Early Symptoms

Many people attribute the early symptoms of hypothyroidism to stress

or aging. They begin to feel chronically tired and overly sensitive

to cold; muscle and joint aches often develop; modest weight gain is

common even though appetite diminishes; constipation is often a

problem.2 Premenopausal women may experience heavy periods.2

As your thyroid hormone levels fall over the following months, the

skin becomes rough and dry, hair coarsens, and mental activity—

including concentration and memory—may become slightly impaired.2

Depression can develop, and some experts believe that even mild

thyroid failure can lead to major depression.3,4

Later Symptoms

If hypothyroidism is left untreated, the classic physical changes

characteristic of myxedema can develop—a round, puffy face with a

sleepy appearance, dry rough skin, and loss of hair. Other later

symptoms include a husky voice and numbness of the arms and legs.

Muscle pain, weakness, and carpal tunnel syndrome may occur. Some

people experience hearing loss, depression, mental confusion,

uneasiness, daytime sleepiness, or memory problems, especially in the

elderly. Obstructive sleep apnea, in which tissues in the upper

airway collapse at intervals during sleep, thereby blocking the

passage of air, is common. Myxedema coma is a life-threatening

condition caused by long-standing hypothyroidism.2

Secondary Hypothyroidism

Secondary hypothyroidism is not common. It is caused by an

abnormality of the pituitary gland and deficient TRH secretion.2

Symptoms in Infants and Children

All newborns are now screened for hypothyroidism in order to help

prevent retardation, which can occur if the disorder is not detected

early. Some early symptoms that develop in children who are not

treated include feeding problems, constipation, hoarseness, and

sleepiness. Later, babies may have protruding abdomens, rough, dry

skin, and delayed teething. If they do not receive proper treatment

in time, they may be extremely short for their age, have a puffy,

bloated appearance, or have below-normal intelligence. Therefore, a

child who appears to be growing abnormally slowly should be examined

for hypothyroidism.5

Subclinical Hypothyroidism

Subclinical hypothyroidism, or subclinical thyroid dysfunction, is

characterized by a mildly elevated TSH level with normal serum T4 and

T3. It is called subclinical because this condition is recognized

before symptoms are detected.6 Symptoms in adults, particularly those

over age 50, usually develop so slowly that hypothyroidism is often

first diagnosed in blood tests.

If you believe you may have symptoms of hypothyroidism, see a

physician; only a physician should diagnose you with hypothyroidism.

[Guest guest]

" In severely ill patients with non–thyroid disease, TSH secretion is

decreased, T4 is decreased, and T3 is markedly decreased. In these

patients, the primary abnormality is the peripheral production of

thyroid hormones (mostly T3). "

I always learn something new so I am looking over this site and here

above in quotes is exactly what my daughter had.

And her doctor told her nothing was wrong--so amazing for me to keep

finding this info when her doctors could not. ugggg

> http://www.emedicine.com/MED/topic1145.htm

>

> take a look at this site--go to the bottom you will see all the

other

> types of thyroid problems--click on them and it will take you to

> other sites.

>

> tina

[Guest guest]

So sorry, Diane,

There was nothing attached! Therefore, well, you know the rest!

Sincerely,

Carole M.

[Guest guest]

Diane,

I haven't checked this out onsite, but your attachment did not get through to my

email.

Could you perhaps include a url in the body of your message?

Thanks,

Fwd: INFO

Dear Friends, Attached is a picture of a woman, pre revision & post

revision, I believe her x rays pre & post are there also, I know this

can be successfully sent from my pc but it would not be accepted by

Feistys because I am using my Webtv addy for my membership. I hope the

Attachment comes through.

Love Always,

Di

[Guest guest]

Thanks Tina, products look very good.

Tom

> The systems our bodies use to handle stress are complex. Central to

> those systems are the adrenal glands. The adrenals rely heavily on

> proper nutrition and require a significant amount of nutrients to

> produce healthy levels of hormones. They also require rest time.

> Unfortunately, many of us don't get enough rest to recover from

high

> levels of stress hormones that are released in our bodies. Our

> adrenal glands become worn down, and the result is adrenal fatigue.

[Guest guest]

this article below is going to confuse many of you so let me try and

explain--excess cortisol is produced when your adrenal glands are

over working--all the stress ect. in your life will cause the adrenal

glands to go into heavy production mode to counteract the stress--

this excess cortisol over long periods of time runs down your

adrenals and your thyroid.

Over time cortisol is needed to be supplemented because of this burn-

out and it is also used for the adrenals to rest while they try and

heal. The adrenals still work just like the thyroid in most cases but

at a lesser amount than what is needed--thus for our use there are

adrenal and thyroid hormonal replacements such as cortef,

hydocortisol--isocort for adrenals (and other natural adrenal

glandulars) and armour ( and other natural glandualars such as

thyroidine)--and the other synthetic thyroid replacements, such as

Synthroid, Levothyroxine (t4) and thyolar (combo t3 and t4). Cytomel

is also pure T3 and is used too.

Many of what you need to take depends on your current condition and

how long you have had this. For many people it's pretty new and some

of these supplements can help them get better---for others they may

be years away from a recovery or may have too much damage to their

organs to ever recover. It's very hard to say as doctors don't think

about healing the glands--they just want you to take pills and go

away.

But many can get healed and many have to take replacment hormone much

longer--maybe forever. Doctors don't go into this kind of detail--

they take the tests and give you pills. It's a shame because the

majority of adrenal and thyroid problems can be corrected if caught

and treated early---when they are left alone is when they proceed

into other illnesses and other type of damage occurs.

Now some thyroid is from genetic problems and auto-immune. But a lot

of it can be helped if we can get it treated properly. All of these

articles are not perfect--some have flaws---others are way off from

what we have all read--but the key here is to understand the common

message and take out of it what could help you. And remember these

are all but opinions.

this is why you have to do your own homework and read, read,

read!!!!! tina

> Cortisol - The Age Accelerator or the Death Hormone!

>

[Guest guest]

Hi Londa

I personally would not touch Diflucan. I have heard

that it not only destroys Candida but it destroys

everything else, and when you stop taking it your

symptoms will return with vengeance.

When Candida dies it gives of 70+ toxins, so your poor

liver will have to cope with the toxins and the

chemicals in Diflucan.

I was nearly bedridden with Candida, my spine was s

shaped due to muscle weakness, I thought I was dying.

My MD was negative. I nursed myself back to health by

removing sugar eating low carbs good quality protein

(no cheese) and lots of steamed vegetables.

Five years on I drink Aloe Vera every day (2 fl oz)on

an empty stomach, and take a 6 strain probiotic.

I hope these health tips will make you change your

mind.

Take care

--- Londa <londa.mccullough@...> wrote:

---------------------------------

Due to an overwhelming amount of Candida I have to do

a stint of Diflucan.

I know it is dangerous for the liver. Suggest milk

thistle during this?

Vitamin E? Anything else?

After?

I am going very very low carb before/during/after

that.

Any place for good recipes besides ImmuneWeb?

Thanks,

Londa

NY,USA

[Guest guest]

(no subject)

utopianmanNot you? Login

Test Tackles Cirrhosis Early on, Say Scientists

by C.

Article Date: 08-18-04

A new, non-invasive blood test is being touted by doctors in Belgium as an early way of predicting liver cirrhosis in patients with hepatitis—a risk factor for the development of hepatocellular carcinoma, known more commonly as liver cancer.1

How It WorksThe new test, designed by researchers at Ghent University in Belgium, detects changes in the amount of various sugars that are produced by the liver, which occur in the transition from fibrosis to cirrhosis. The study team published the results of its test last April. They say it requires little blood, and avoids the need for invasive liver biopsies.

“We hope to be able to alert patients when the chance of liver cancer increases sharply,†explained study team leader Nico Callewaert, a researcher at Flanders Interuniversity Institute for Biotechnology (VIB) in Belgium. “At that moment, the doctor can test frequently for the presence of cancer cells, and detect the cancer early enough so that the patient can quite possibly be helped.â€

Liver Disease IncidenceMillions of people around the world have chronic liver disease. In the U.S. alone, it’s estimated that as many as 25 million Americans—1 out of every 10—are or have been affected with liver and biliary diseases. In addition, 300,000 people are hospitalized each year due to cirrhosis. The leading causes of cirrhosis are chronic hepatitis C infection, and alcoholic liver disease.2

Experts describe the liver as a very complex organ where more than 500 metabolic functions take place, including the clearing of toxic substances from the body, and the production of proteins that coagulate the blood following wounds. Liver problems also have a high rate of incidence, experts say, and after cancer and cardiovascular disorders, are the third leading cause of death among people between the ages of 40 and 65.

The Belgian researchers describe fibrosis as the most problematic aspect of chronic liver disease, in which connective tissue grows throughout the liver, disrupting the composition of the organ, and in time, its functioning, as well. Depending on its cause and on the patient, liver fibrosis can evolve rapidly or slowly. There are several distinct stages, the final of which is liver cirrhosis. At that point, a person’s odds of developing liver cancer jump sharply to between 25 and 40 times higher than normal. In a very advanced cirrhotic stage, the liver is no longer able to function. The only possibility at this point is a liver transplant.

Biopsy: The Only Current OptionPhysicians, therefore, need to design effective treatment plans for patients with fibrosis, depending on it stage and other factors, Callewaert and his colleagues explain. If cirrhosis has set in, doctors will want to start keeping track of the development of liver cancer, which can occur at any moment. While early detection, followed by relevant treatment is vital, physicians cannot determine whether a patient has developed cirrhosis except by performing a liver biopsy, in which a tissue sample is taking by injecting a needle through the skin into the liver.

That’s why Callewaert and his associates developed this less invasive blood test, they say. In a test group of patients who took part in their trial, the researchers succeeded in detecting 70% to 80% of early cirrhosis cases. After the new test detected changes in blood sugars released by the liver, the study team measured their levels, quite accurately they say, with advanced instrumentation that is also in use in clinical laboratories for genetic tests.

Callewaert and his team say the test is now being perfected, and through collaborations with industry, they hope to produce one that is easy to use and shows 100% specificity for liver cirrhosis.

A Possible Clinical ApproachOften, a decade or more can pass between a person’s initial diagnosis and the development of liver cirrhosis. The researchers envision physicians using their test on an annual basis to quickly detect a change and be able to predict an early stage of cirrhosis.

“The current ‘gold standard’ for liver cirrhosis detection is an invasive, costly, often painful liver biopsy,†they wrote. “This biomarker combination could eventually be used to follow-up examinations of chronic liver disease patients to yield a warning that cirrhosis has developed, and that the risk of complications (such as hepatocellular carcinoma) has increased considerably.â€

1. Callewaert N, Van Vlierberghe H, Van Hecke A, Laroy W, Delanghe J, Contreras R. Noninvasive diagnosis of liver cirrhosis using DNA sequencer-based total serum protein glycomics. Nat Med 2004 Apr;10(4):429-34.2. National Liver Foundation. Hepatitis and Liver Disease in the United States.

is a long-time health journalist and an editor for Priority Healthcare. His credits include coverage of health news for the website of Fox Television's The Health Network, and articles for the New York Post and other consumer and trade publications.

Cirrhosis of the Liver

Liver Fibrosis

Liver Cancer

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