Re: Hepatic Encephalopathy

[Guest guest]

...... I have and some others here also have..... how can I help

you?

Jerry

My mother has PBC and has suffered from hepatic encephalopathy. I

was wondering if anyone else has or knows someone who has suffered

from unusual cases of encephalopathy (beyond just confusion)?

Thanks.

[Guest guest]

Joanna, you might enjoy keeping in mind the title of a book on mental disorders by Dr. Oliver Sachs, "The Man Who Mistook His Wife for His Hat."

Harper

[Guest guest]

B, I'm so sorry to hear about your mother's difficulties. I assume that the usual brain scans have been done? My calm, quiet, cheerful mother developed symptoms something like that, which were eventually attributed to a form of brain cancer.

What a hard time this is for both of you. The thing I always try to remember in dealing with people whose minds are altered is that they didn't choose to be so; it happened to them, just as a broken bone might in other circumstances.

Harper

[Guest guest]

Encephalophy can also cause confusion, and you can even forget who is there

with you...meaning you may " forget " your spouse is you spouse.or ... As my

doc so gently Ha ha put it.he said if I forget my husbands name..then it

is ok...but if I forget I HAVE a husband then Jeff is to bring me right in.

Other changes are in personality....example...people tend to get mad

easier....exaspersated by confusion... Hope that helps. Joanne C.

[ ] Hepatic Encephalopathy

> My mother has PBC and has suffered from hepatic encephalopathy. I

> was wondering if anyone else has or knows someone who has suffered

> from unusual cases of encephalopathy (beyond just confusion)?

> Thanks.

>

>

>

[Guest guest]

-

Well my mom's episodes with encephalopathy have been different that

what the doctor's say is normal encephalopathy. She does get angry

and confused, also very happy and childlike. But when it gets really

bad she becomes out of control. She can't talk at all for days or

she can't stop talking for days. She makes no sense at all. She has

had paranoid delusions, such as family members being shot, people

trying to kill her, towns being blown up.., she has gone on shopping

sprees, become violent. She rarely gets lethargic, which is one of

the symptoms, and is usually manic. Also her amonia levels are

usually not elevated. Last year she was encephalopathic for almost 6

months, not always at its worst but never completely normal. Then

for 6 months she was completely fine mentally, now she has had

enceholopathy for almost 3 months (currently hospitalized. Doctors

are not completely convinced it is encepholopathy since she doesn't

respond to the lactlose or neomycin the way she should. They keep

looking for something else wrong with her, and is currently being

evalutated by the neuro-psych people for about the 6 or 7th time.

They always find nothing else wrong.

I was just wondering if this sounded familiar to anyone else?

Thank you for your feedback.

-- In @y..., gefox@w... wrote:

> ...... I have and some others here also have..... how can I

help

> you?

> Jerry

>

>

> My mother has PBC and has suffered from hepatic encephalopathy. I

> was wondering if anyone else has or knows someone who has suffered

> from unusual cases of encephalopathy (beyond just confusion)?

> Thanks.

>

>

>

[Guest guest]

>From: B474@...

>Reply-

>

>Subject: [ ] Hepatic Encephalopathy

>Date: Thu, 17 May 2001 06:53:52 -0000

>

>My mother has PBC and has suffered from hepatic encephalopathy. I

>was wondering if anyone else has or knows someone who has suffered

>from unusual cases of encephalopathy (beyond just confusion)?

>Thanks.

>

HELLO,

MY NAME IS MARY ANN AND MY MOTHER HAS HEPATIC ENCEPHALOPATHY. I CAN TELL

YOU LOTS OF THINGS THAT HAVE BEEN HER PROBLEM SINCE SHE WAS DIAGNOSED WITH

THIS TERRIBLE THING SEVEN YEARS AGO.

HER MIND HAS GONE TO CHASING SNAKES, RATS HORSES AND EVERTHING IN THE BOOK.

NOT KNOWING WHO SHE IS OR WHERE SHE LIVES, NOT BEING ABLE TO SWALLOW.

REALLY ANYTHING THAT EFFECTS THE BRAIN.

WHEN THE AMMONIA LEVEL GOES DOWN HER MIND IS AS GOOD AS MINE. WE SOMETIMES

HAVE TO REMIND HER OF THINGS THAT HAVE HAPPENED IN THE PAST. SHE IS 75

NEVER DRANK, SMOKED. SHE HAD HEPATITUS A, THEN SERIOUS OF THE LIVER THEN

THIS HEPATIC ENCEPHALOPATHY.

WE LIVE IN TN. IT TOOK SIX MONTH BEFORE WE EVER FOUND OUT WHAT HER PROBLEM

WAS.

RIGHT NOW WE HAVE HER IN A ASSISTED LIVING PLACE, WHICH IS VERY NICE AND

JUST THANK GOD THINGS ARE BACK TO NORMAL RIGHT NOW. WE HAVE IN THE LAST

YEAR GONE THRU ANOTHER HIGH AMMONIA LEVEL. NOW FOR THE FIRST TIME IN SEVEN

YEARS HER AMMONIA IN WITHIN RANGE.

SHE TAKES LACTOSE TO REDUCE THE AMMONIA. NO MEAT. LOST 125 POUNDS SINCE

JUNE OF LAST YEAR.

PLEASE FEEL FREE TO E-MAIL ME DIRECT. I AM NOT A EXPERT BUT I CAN TELL YOU

THE TINGS WE HAVE GONE THRU.

MY E-MAIL IS goofiebird@...

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

what is this? I have never heard Hepatic Encephalopathy before?

Debbie/Louisville

[Guest guest]

>From: dawtenor@...

>Reply-

>

>Subject: Re: [ ] Hepatic Encephalopathy

>Date: Tue, 22 May 2001 20:57:11 EDT

>

>what is this? I have never heard Hepatic Encephalopathy before?

>Debbie/Louisville

debbie, this is a disease where your ammonia level goes too high.

read more on the internet

mary ann

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi Dawn!

My name is and I am new to the group. I have hepatic encephalopathy which is when the body can not process protein causing ammonia build up that can travel to the brain causing disorientation dilusional thinking coma lapse of memory. The treatment is large doses of a a strong laxative called lactulose which causes you to spend lots of time and many trips to the bathroom. It is one of the things that some people with end-stage liver disease get along with esophogeal bleeding of the varicies(veins). Hepatic enceholopathy is only in four out of 100,000 people and I have it!

Hope I shed some light for you.

Sincerely,

in Tustin, CA

Re: [ ] Hepatic Encephalopathy

what is this? I have never heard Hepatic Encephalopathy before? Debbie/Louisville

[Guest guest]

Please remove us from your mailing list.

Re: [ ] Hepatic Encephalopathy

> >Date: Tue, 22 May 2001 20:57:11 EDT

> >

> >what is this? I have never heard Hepatic Encephalopathy before?

> >Debbie/Louisville

>

> debbie, this is a disease where your ammonia level goes too high.

> read more on the internet

> mary ann

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

>

[Guest guest]

I had it and it was awful, but the lactulose did work pretty good!

Lori C.

Re: [ ] Hepatic Encephalopathy

Hi Dawn!

My name is and I am new to the group. I have hepatic encephalopathy which is when the body can not process protein causing ammonia build up that can travel to the brain causing disorientation dilusional thinking coma lapse of memory. The treatment is large doses of a a strong laxative called lactulose which causes you to spend lots of time and many trips to the bathroom. It is one of the things that some people with end-stage liver disease get along with esophogeal bleeding of the varicies(veins). Hepatic enceholopathy is only in four out of 100,000 people and I have it!

Hope I shed some light for you.

Sincerely,

in Tustin, CA

Re: [ ] Hepatic Encephalopathy

what is this? I have never heard Hepatic Encephalopathy before? Debbie/Louisville

[Guest guest]

Please remove us from your mailing list.

Re: [ ] Hepatic Encephalopathy

what is this? I have never heard Hepatic Encephalopathy before? Debbie/Louisville

[Guest guest]

Just a little added info on this subject...Doctors have also told us

that it is not only the ammonia levels that go up, but other toxins

as well, that are not measureable.

- In @y..., " Lori Cummins " <tlknj@r...> wrote:

> I had it and it was awful, but the lactulose did work pretty good!

> Lori C.

>

>

> Re: [ ] Hepatic Encephalopathy

>

>

> Hi Dawn!

> My name is and I am new to the group. I have hepatic

encephalopathy which is when the body can not process protein causing

ammonia build up that can travel to the brain causing disorientation

dilusional thinking coma lapse of memory. The treatment is large

doses of a a strong laxative called lactulose which causes you to

spend lots of time and many trips to the bathroom. It is one of the

things that some people with end-stage liver disease get along with

esophogeal bleeding of the varicies(veins). Hepatic enceholopathy is

only in four out of 100,000 people and I have it!

>

> Hope I shed some light for you.

>

> Sincerely,

> in Tustin, CA

> Re: [ ] Hepatic Encephalopathy

>

>

> what is this? I have never heard Hepatic Encephalopathy

before?

> Debbie/Louisville

>

>

[Guest guest]

In a message dated 6/9/2006 2:06:03 PM Central America Standard Time,

hepamin4u@... writes:

Hi Everyone!

I wonder how many people (percentage-wise) in the Liver community are

aware of Hepatic Encephalopathy?

Totally aware.

Tammy

[Guest guest]

Kathy in CA:

Aware

[Guest guest]

My Dr. told me I could get this from not having enough carbs, and too much

protein. Please check the Palmer book for how this relates to food. \

Kathy

[Guest guest]

Hepatic encephalopathy is caused from toxins (including ammonia) because the

liver

isn't filtering them appropriatley for the body to eliminate them. Early signs

of this include confusion and sleep pattern disturbances. There are medications

to help the body rid itself of some of these. I was initially treated for this

with Neomycin and then with Xifaxin (which is actually used when people get sick

from food when traveling). Neither worked for me. Then I was given Lactulose, a

very sweet syrup that you drink twice/day. This seems to help. Unfortunately, as

encephalopathy progresses the worst case scenario is hepatic coma. I've only

heard of two people in this stage and both were elderly with multiple health

problems.

Hope this helps!

TammyAnnG@... wrote:

In a message dated 6/9/2006 2:06:03 PM Central America Standard Time,

hepamin4u@... writes:

Hi Everyone!

I wonder how many people (percentage-wise) in the Liver community are

aware of Hepatic Encephalopathy?

Totally aware.

Tammy

[Guest guest]

That is true. People at this stage are placed on a low protein diet.

itsukat@... wrote: My Dr. told me I could get this from not having

enough carbs, and too much

protein. Please check the Palmer book for how this relates to food. \

Kathy

[Guest guest]

That is true. People at this stage are placed on a low protein diet.

itsukat@... wrote: My Dr. told me I could get this from not having

enough carbs, and too much

protein. Please check the Palmer book for how this relates to food. \

Kathy

[Guest guest]

Do you need melissa palmers book, I have one to pass on?

Re: [ ] Hepatic Encephalopathy

My Dr. told me I could get this from not having enough carbs, and too much

protein. Please check the Palmer book for how this relates to food. \

Kathy

[Guest guest]

I keep my son on low low protein, but, do give him vegetable protein

I read this is ok

I hoe they were right

sherry

[Guest guest]

Sherry, When I had encephalophy before TX I was on very low

protein....I am not positive but I believe that protein is

protein.because if your kidneys are in trouble you go on a low protein

diet and that includes all protein.be it meat or beans or whatever.

All protein is hard to digest.To be sure ask your doctor what is ok and

not allowed. He may also have a nutritionist for you to see.that is

what I did. Last I knew one was to go on a high carb diet...low

protein. Anyone else here now the lastest?

Joanne

>

> I keep my son on low low protein, but, do give him vegetable protein

> I read this is ok

> I hoe they were right

> sherry

>

[Guest guest]

As far as I know it is still low protien and high carbohydrates.

The liver needs the carbs to help flush and heal. The protiens are

very hard on the liver.

I tried many diets but always end up sick because most have high

protien in them.

Good luck

[Guest guest]

The liver can be affected by multiple agents, frequently

pharmaceutical. If she has been on a lot of meds, it would be

difficult to trace it back to mold. How early on were the liver

enzymes abnormal in her case. Did you ever check for pesticides

since that is also a major source of damage to the liver and they

are sued ubiquitously. Older buildings are often chlordane

contaminated.

It begins with establishing parameters of injury to the organ cited

and deciding it if is static or progressive in nature. I have toxic

encephalopathy as per MRI and other testing which appears to be

static. Then you trace back and look at the environments or

ingested substances that might account for it in the history. Unless

you can test an environment, causation will be hard to establish. I

tested and found the pesticides which caused my damage.

Barb Rubin

=======================

-- In , mnpearl@... wrote:

>

> Hi everyone,

> I don't think I've posted here more than once before, but I read

everything

> you share. Recently someone posted a link about toxic

encephalopathy and

> when I went there I found another link to hepatic encephalopathy.

This is what

> I believe my daughter is suffering from, as she has had many of

the symptoms,

> including being unable to perform personal cares.

[Guest guest]

Thanks for the information Barb. We have already determined that our main

exposure was mold - my daughter was only 2 1/2 when she was exposed -- and

then remodeling chemicals. I have read Dr. Kilburn's and Dr. Ziem's

information on toxic encephalopathy and know of the connection to mold and

chemicals. What I was wondering is if anyone has any documentation of a

connection

between mold exposure and hepatic encephalopathy. Here's a few links on the

topic:

_Hepatic Encephalopathy Care Guide Information_

(http://www.drugs.com/cg/hepatic-encephalopathy.html)

_Hepatic encephalopathy_ (http://adam.about.com/encyclopedia/000302sym.htm)

_Hepatic Encephalopathy - RightHealth Topic Page_

(http://www.righthealth.com/Health/hepatic_encephalopathy/-od-definition_adam_1%\

252F0003021-s)

_Hepatic Encephalopathy: Manifestations of Liver Disease: Merck Manual Home

Edi_ (http://www.merck.com/mmhe/sec10/ch135/ch135f.html)

It appears one has to have a liver disease to manifest this......I'm

thinking porphyrin enzyme disorders would qualify. Just looking for a

definitive

connection to mold if there is one out there.

Thanks again for the help.

Jean

**************It's Tax Time! Get tips, forms and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolcmp00300000002850)