Re: Digest Number 1457

[Guest guest]

Joan,

I'm glad you are doing so well and that you have seen improvement but

cirrhosis, at this point in time, is not reversible. Please, if you have real

research data that supports this statement, this group of folks and I sure

all medical folks would like to see it.

Let me again suggest that the members here who want to ask the experts about

thios disease and receive the latest research attend the PBC Conference in

Las Vegas. While we are a great support group for each other, there are is a

lot of misinformation that passes thru here too. I've again included the info

for the Conference:

PBC Conference 2001

" Progress through Partnerships "

The PBCers Organization proudly presents our Primary Biliary Cirrhosis

Conference 2001 " Progress through Partnerships. " Our conference is to provide

the most up-to-date PBC information on research, treatments, transplantation,

our growing PBCers Organization and other autoimmune liver diseases.

Our conference is open to all those with PBC, other liver diseases, family

members, friends and the medical community.

Thanks to our Conference Committees for making the third annual PBC

conference a reality and success.

Wednesday, June 20 - Saturday, June 23, 2001

Flamingo Hilton Hotel & Casino

Las Vegas, Nevada

Conference Segments

PBC

PSC & AIH

Family members & friends

Golf Challenge

PBC Conference 2001 Guest Speakers (Most quest speakers will present in 2

different segments)

Jim Ader

Former FBI Agent

PSC Post Transplant

PBC & PSC Topic: An Organ Donor Saved My Life

Bach, M.D. (Tentative)

Specialty Liver Diseases

The Mount Sinai Medical Center, New York

Monmouth Medical Center, Long Branch, NJ

PBC Topic: Announced at later date

Bass, M.D.

Professor of Medicine, Medical Director, Liver

Transplantation Program,

University of California

San Francisco

PBC Topic: PBC & PSC comparison

PSC/AIH Topic: Diseases following transplantation and the question of

recurrent disease

Bernstein, M.D.

Chief, Division of Gastroenterology

North Shore University Hospital

Manhasset, NY

PBC Topic: Symptoms & complications

PSC/AIH Topic: Autoimmune Hepatitis

Alan Broiwnstein

President & CEO

American Liver Foundation

Topic: ALF & the PBCers

Kris V. Kowdley, M.D.

Associate Professor of Medicine

University of Washington School of Medicine

Division of Gastroenterology/Hepatology

Seattle WA

Topic: Announced at a later date

Mason, M.D.

Medical Director of Liver Transplantation Ochsner Clinic. Assistant Professor

of Medicine

Tulane University Medical Center

Assistant Professor of Microbiology, Immunology, and Parasitology, Louisiana

State University Medical Center

New Orleans, LA

PBC Topic: Is PBC an Infectious Disease

Family members segment-open questions & answers

Palmer, M.D.

Private Practice Long Island, NY

Specialty: Gastroenterology and Hepatology

Medical advisory board of the ALF New York Chapter

ALF National Chapter Nutrition Education Subcommittee

PBC Topic: Diet, nutrition & exercise

PSC/AIH Topic: Announced at a later date

Judy Van de Water, Ph.D.

Associate Clinical Professor of Medicine

Division of Rheumatology/Allergy

UC

, CA

PBC Topic: Update PBC Research

Conference Schedule:

Wednesday, June 20th:

2: 00 - 5:00 pm - Early Registration and ice breaker

Thursday June 21 -Group Lunch and Refreshments

10:00am - 5:00pm Group Segments & Guest speakers

Friday, June 22 -Group Lunch and Refreshments

10:00am - 6:00pm Group Segments & Guest Speakers

Saturday, June 23 -Group Lunch and Refreshments

10:00am - 5:00pm Group Segments & Guest Speakers

6:30pm - 9:00pm PBCers Banquet & awards ceremonies

PBC Conference Fee

$130.00 received before April 30, 2001

$145.00 received after April 30, 2001

We cannot accept any conference fees after June 5, 2001 or at the conference

doors.

Check or money order. No cash! US Funds only

Conference fee applies to ALL those who attend ANY of our speaker's meetings,

group functions or scheduled meals. If a spouse, family member or friend

attends ANY of our functions, they must also pay a conference fee. Sorry we

cannot prorate conference fees for one or two meetings/meals. Again this

year, name tags will be used as our conference tickets.

Conference Fee Includes:

All guest speaker's

Group segments

Open meeting rooms

Scheduled group meals

Refreshments in open meeting rooms when available.

Gratuity

Tax

Refund Policy:

We must have an exact number of those attending our conference because of

meeting room and meal deposits. Once we have paid these fees to the

Flamingo, we do not have a refund option.

Conference fees are 100% refundable if request is received by May 15, 2001.

We CANNOT refund any conference fees after May 15, 2001.

Keep in mind, if you find out after May 15, 2001 that you cannot attend the

conference, you might be able to make arrangements with another PBCer who was

not able to pay their fees in advance and would like to attend.

Conference Fee Mailing Instructions

Check or money order made payable to: PBCers Organization

Mail to:

PBCers Organization

1430 Garden Road

Pearland, Tx 77581

PBCers Hotel Room Rate

$85.00 per night (tax not included)

Group rate is for double or single occupancy.

$20 per person, per night fee will be charged (additional persons over 2

staying in same room.)

Check in time is 3pm and check out time is 12pm.

Our group rate is available Monday, June 18 through Sunday, June 24, 2001.

No Saturday arrivals.

Our group rate and block of rooms will be available through May 24, 2001

After May 24th, all reservations will be booked at the standard Flamingo

rate, subject to availability.

Everyone must book their own reservations. Credit card for one night's

deposit is required by the Flamingo, or check within 10 days. (No penalty if

reservation is canceled 72 hours prior to arrival date. Flamingo change fee

of $15.00 if name or date is changed within 7 days of arrival.)

<< Jerry, Jerry, Jerry,

> AIH cirrhosis can be reversed. Cirrhosis caused by alcohol can not be

> reversed. Take a look at me I am proof positive.

> Joan Claffey >>

[Guest guest]

Hi Joan, I pray you're right about the reversal. Actually, I live on hope

and prayers right now. It's all I have to make it throught this

life-altering disease. Take care, in LA AIH Nov 99'

[Guest guest]

<PRE>Every person who watched 20/20 this evening must flood that office with

information about their illnesses and how they have been linked to toxic

mold. Barbara Walters t.v. special this evening was an absolute disgrace. To

make a laughing stock mockery of an illness that has done so much damage to

people is extremely disturbing. I would like to personally campaign to take

20/20's Barbara Walters off the air forever after tonight's shoddy news

reporting.

[Guest guest]

I agree. I am OUTRAGED!! they LAUGHED! Let them live 24 hours in my shows. My next thing to do is find a number. I have myself personally sent them my story about 3 months ago. Twice. They made a mockery of very sick people. Let THEM wear a 3m mask outside as earth gives me asthma. Let THEM live in safe rooms with hepa filters and bodies full of toxins and pains!! IT WAS HORRID and DEGRADING. I will write and call and ask where MY story hidden by the Federal Government went???????????? Janet STevens.

[Guest guest]

I agree. I watched the 20/20 program in utter disbelief. The reporting was

shoddy. I am saddened that the families interviewed were treated so poorly.

It was as if this program was attributing all of their ailments to hysteria.

Who paid for this program??? Insurance companies?? At the end of the report

Barbara and her co-host were worse. They acted as if this were a joke,

especially when the co-host said he was happy that he did not burn a rental

after renters complaints of mold. He said he cleaned it up and no more

problems. Guess he has not worked for an establishment that has ignored

chronic water intrusion into a building for over ten years and now has many

people ill with similar conditions. I suppose he would say we are all

hysterical females as the maintenance director states.

Too bad they did not do their homework before presenting such a sham, but

then they may have had to tell the truth.

Eileen B

[Guest guest]

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

From: <peewee1015@...>

< >

Sent: Friday, November 29, 2002 9:24 PM

Subject: Re: [] Digest Number 1457

I have to agree because of the harm TOXIC mold has done to my husband and

myself. They just don't get it yet. That mold has always been with us is

lame because whatever strain of mold is causing all this illness and death

is (or must be) a mutated strain. We (humans) have gone overboard with new

chemicals, drugs, building materials, better mousetraps and now we are

engaged in chemical and biological warfare on levels that remain undisclosed

to the public. Non of these things were mentioned on the 20/20 program.

This is not a fad set off by greedy lawyers and mold clean-up companies.

There must be some reason why everyone's hair is falling out and COPD is at

an all-time high. Betsy

> <PRE>Every person who watched 20/20 this evening must flood that office

with

> information about their illnesses and how they have been linked to toxic

> mold. Barbara Walters t.v. special this evening was an absolute disgrace.

To

> make a laughing stock mockery of an illness that has done so much damage

to

> people is extremely disturbing. I would like to personally campaign to

take

> 20/20's Barbara Walters off the air forever after tonight's shoddy news

> reporting.

>

[Guest guest]

Here is the email I sent to 20/20 this morning. If there was a phone number I would have called it!!! They LAUGHED. Janet s

I am appalled and disgusted by your broadcast last night on Toxic Mold. TWICE I have sent my story on how sick I am from it and the Federal Government is trying to hide it. I have tests, doctors even an Environmental Doctor. Your reporters LAUGHED and MOCKED! I felt so degraded my daughter had to calm me down from stop crying. Everyone has an opinion but none has a right to MOCK those who are really sick.They should get asthma at 38, live in safe rooms with air cleaners, wear a 3m mask outside as I am so hypersensiive now the mold in the dirt sends m into attack. Cry to sleep as face and body hurts and burns in the muscles.I have had testing to proive it.

I will NEVER watch you show again. I am still angry and crying while I write this. There are those of us looking for help to understand and your broadcast made a mockery of us. Where did the story I sent you TWICE go? In the garbage? Afraid of the Government? They use this stuff for biowarfare and there are other molds like Aspergiluus too that can make peope sick and it is proven.Thanks for letting people laugh and ock on nationsl televisin at peole like me very sick from exposure to Toxic Mold.

Janet s

55 Front St Apt 5

South Berwick , Me 03908

1 207 384 2242

Here is story a third time if you are interested or will you let people laugh at that too?

I have a story that everyone wont tell and I think it is because they are afraid of the Federal Government. Thank you for your time...

My name is Janet s and I live in South Berwick Maine. I have been fighting the Portsmouth Naval Shipyard and US Dept of Labor Workerrs comp since last April. I am severely allergic to mold from a TOXIC MOLD building basement on the shipyard. An Environmental report stating this place is full of Stachybotrus and Aspergillus, Fusarium and many more was HIDDEN for NINE months. I started with sinus, then hives then asthma and now wear a 3m mask all the time as I smell mold in the dirt outside. The shipyard has tried to prove me crazy, now that I called OSHA they have put out paperwork that you need latex suits and respiratory quals to go down there, but the US Dept of Labor says I am lying, mold showed up last season, I used too much nose spray. I have tests, doctors letters, shipyard emails, all documentation.I live in my apartment safe rooms with hepa filter air cleaners right now on admin leave. OWCP wants me to see THEIR doctor and get tested but I have two doctors letters stating that if I am, I may possibly worsen my deteriorating condition. I do not walk well from a high dose skin test in Boston from a doctor who says NO ONE gets sick from mold. He says it is hocus pocus. This is Dr. Aiden Long at Mass General. I even have a witness testimony to that. I ended up on ER again the other night from asthma attack.They want me to sign off on disability. I cant. HOW DO THEY get away with hiding something that SAYS people should be told, that this place was unacceptable, that is was serious enough to cause respiratory disease? I now live on inhalers and NEVER BEFORE had asthma in my life. I worked in this black mold basement eight years then last three above it with holes in the floor for wiring and open stairwell and freight elevator. I have all documentation to prove. I hired a lawyer for a civil suit but not one lawyer in area will help with workman's comp when they hear it is the Shipyard. They say thanks but no thanks. Human Recourse Office there has quite a reputation. They have sent letters to OWCP an d Senator Snowe that is full of untruths. I have involved Senator Snowe. My agency and OWCP send lies.I chop up the letters and send them back. You would not BELIEVE the lies and cover ups from the Federal Government. Anyway, I am a single mom who has lost her whole life and very sick and bitter and fraustrated.They have given me till Dec 31 to make a decision. OWCP hasn't said no yet and as of Dec. 31 I have to take disability, go on leave without pay as I am now on administrative leave, or go back to work where I get sick and this high dose testing I had done has gone deep into muscles. I can barely walk never mind drive. This doctor is what Workman's comp wants to believe, yet I have a years worth of testing and medical information from doctor here which has all been submitted. Its not fair. I even have pictures if this place. Disability is a slap in the face for a smart 38 year old woman whom at the shipyard is a Technical Information Specialist for 16 years with Secret Clearance. Disability is half of my income the first year, then goes down even lower. I have a National Honor Society daughter to send off to college next year. From this, I have had to buy a new car as old one had leaks and was moldy so gave me asthma attacks.No one seems to grasp what mold and mold spores in the air can make people very sick. I wear my 3m mask everytime I leave my house. I cannot go in public places as I smell mold in vents, I couldn't even go to my mothers for thanksgiving as I am so hyper sensitive that her hose makes me sick. No one will tell my story and the Shipyard is trying to hide this. You have to have latex suits and respirator quals to go onto this basement now, but according to Workman's Comp and the shipyard, I cant be sick from this. Thank you for taking the time to read this.

Sincerely,

Janet s

55 Front Street Apt 5

South Berwick, Me. 03908 207 384 2242 Gingersnap1964@...

1 207 384 2242

[Guest guest]

I also went on to Congress.org, then news media in Maine and came up with a phone number for channel eight. All automated as Saturday but I left quite a message with my name and phone number at the production dept off the automated system. I cry for everyone of us mocked by those reporters last night...Janet s

[Guest guest]

Wow! Geraldine, as a behavior analyst, I am so happy to hear you say what

you did emphasizing science of ABA and working with any children no

matter the diagnosis. I am so thankful for your wisdom regarding that

issue. Farb has many years of experience with children with autism,

but more importantly he understands and has formal education in the

science of behavior analysis. I understand the hesistation of parents

and school districts to trust that just because someone is called a

behavior analyst does not mean they are a competent one. Unfortunately,

Houston has had their share of " so called " behavior analysts without a

real understanding of behavior anlaysis, the science. This has left a

bad impresssion in the school districts, making it more difficult for

behavior analysts to be more involved, despite the great need for us.

We always caution parents to be certain that they choose a behavior

analyst according to the guidelines set forth by the Association of

Behavior Analysis. You can find those guidelines at www.behavior.org,

click on autism, click on The Autism SIG of ABA's Guidelines for

Consumers . I understand the need to seek a provider immediately and

sometimes almost desperately for parents of children with autism,

however, behavioral programming needs to be individualized to the child's

needs. This means that you want to find someone who can understand the

science of ABA, have enough experience with applied treatment to see your

child often enough to establish themself as a reinforcer for your child,

have your child's behavior under stimulus control, all this to be able to

program effectively according to your child's needs not from a book or

list of programs. I am just so delighted that I can say Houston is

developing a strong sound behavioral community of behavior analysts. I

am starting to see the fruit of this, by actually having been invited to

be involved with Cy-Fair, Conroe, Klein and Katy-ISD:-)

The Shape Of Behavior, Inc.

Domonique Randall, M.S.,BCBA

www.shapeofbehavior.com

[Guest guest]

> Does anyone feel worse at night than in the morning? I am stiff in the

morning, but I hurt worse at night. My Rheumy only asks about morning stiffness.

Is this normal or I should say abnormal?!!Ha Ha.

Yes, very much so. I can make it thru the day okay when I'm not having a

flare, but every night is painful.

[Guest guest]

My hands, knees, hips and back are worse in the morning, but my ankles and feet hurt worse at night.

, 45

On Mon, 03 Apr 2006 12:29:44 -0600 <kyrik@...> writes:

> Does anyone feel worse at night than in the morning? I am stiff in the morning, but I hurt worse at night. My Rheumy only asks about morning stiffness. Is this normal or I should say abnormal?!!Ha Ha.Yes, very much so. I can make it thru the day okay when I'm not having a flare, but every night is painful.

"Have no fear for what tomorrow may bring. The same loving God who cares for you today will take care of you tomorrow and every day. God will either shield you from suffering or give you unfailing strength to bear it. Be at peace, then, and put aside all anxious thoughts and imaginations."-St Francis DeSales