Re: Digest Number 1048

February 25, 2000

In a message dated 2/25/00 3:40:43 AM Eastern Standard Time,

lyme-aidonelist writes:

<< Hi!

My name is Kelty. I signed up for this on monday, but the 73 new messages I

had on tuesday scared me a bit! >>

Hi Kelty,

Welcome to the family (and to your husband). If the messages become to

much you can go to digest format. I have to be on digest because I also have

3 children (same ages as yours) and my time and energy is so limited. I hope

that you find the help and support here that I have. If you have any

questions or just want to release, please feel free.

Your Lyme Friend,

in VA

February 25, 2000

In a message dated 2/25/00 3:40:43 AM Eastern Standard Time,

lyme-aidonelist writes:

<< How does everyone do it?

>>

Anita, June and Christie,

First let me appologize for not writing sooner, I have been feeling

pretty bad the past couple of days and I just didn't have the energy to

write. I finally am having a day that is decent. Thank you God.

I just want to let you all know that I am so sad that you have all been

having such a bad time of it lately. I am keeping you all in my prayers and

asking God to wrap you with His warm and caring arms to see you through. May

God bless you all.

Your Lyme Friend,

in VA

April 18, 2001

Tighter rules are sought for dietary supplements

By ROBERT PEAR c.2001

New York Times News Service

WASHINGTON -- Federal investigators called Monday for much more

stringent regulation of dietary supplements, saying current

standards

and their enforcement were grossly inadequate and allowed safety

problems to go unchecked.

In the final draft of a new report, the acting inspector general of

the Health and Human Services Department said manufacturers of

dietary

supplements, the supplements themselves and their ingredients should

be registered with the government.

The investigators said the Food and Drug Administration lacked the

most basic information needed to analyze reports of illness and

injury

associated with dietary supplements, which include vitamins and

minerals, herbal products, amino acids and some sports nutrition

products. Manufacturers of supplements are not required to report

such

" adverse events " to the government, as makers of prescription drugs

must do.

In many cases, the investigators said, federal officials cannot

determine the ingredients and cannot identify or locate the

manufacturer of products suspected of harming users.

The study, to be issued later this month, said: " FDA was unable to

determine the ingredients for 32 percent (1,153 of 3,574) of the

products mentioned in adverse event reports. FDA does not have the

product labels for 77 percent of the products mentioned in reports.

FDA was unable to determine the manufacturer for 32 percent of the

products involved in reports. "

The acting inspector general, F. Mangano, said more than 100

million Americans were taking dietary supplements. The industry

estimates that retail sales total nearly $15 billion a year.

The office of the inspector general said manufacturers should be

required to notify the government when they receive reports of an

illness or injury that may be associated with dietary supplements.

Though many dietary supplements are beneficial, the study said, some

carry risks. Ginkgo biloba, often taken to enhance memory, " can lead

to excessive bleeding and, in some cases, stroke, " the study said.

High doses of vitamin A in pregnancy can lead to birth defects. St.

's wort, typically used to enhance mood, can reduce the

effectiveness of antiviral drugs, including those that combat

infection with the virus that causes AIDS. Ephedrine alkaloids have

been linked to heart attack, stroke, seizure and death, the study

said.

Just last week the government advised consumers to stop using herbal

remedies that contain Aristolochia, also known as Virginia

snakeroot.

The FDA said some users had developed permanent kidney damage and

cancers of the urinary tract.

ph A. Levitt, director of the Center for Food Safety and Applied

Nutrition at the FDA, said the inspector general's report was " very

helpful. "

In an interview, Levitt said he agreed that " we need a more

sophisticated system of reporting adverse events, " and the agency

has

developed a plan to make improvements. But Levitt said the agency

would need additional money, perhaps $1 million to $2.5 million to

get

started.

The FDA can seize products, issue warnings, request recalls and

order

manufacturers to put more information on product labels. But from

January 1994 to June 2000, investigators said, the government took

only 31 such actions to protect users of dietary supplements.

Healthy consumers take dietary supplements to increase energy,

strengthen their immune systems, prevent memory loss, build muscle

mass or lose weight. Sick people use them as an inexpensive

alternative to some prescription drugs.

Dietary supplements are loosely regulated by the government under a

1994 law. Manufacturers do not have to obtain approval from the

government before marketing such products. The FDA relies mainly on

reporting of " adverse events " to pinpoint safety problems.

But the inspector general said this reporting system was ineffective

because the food and drug agency learned of only a tiny fraction of

the events that occurred -- far fewer than are reported to poison

control centers or state health departments.

The reporting of injuries to the government is voluntary the study

said.

A spokesman for the American Herbal Products Association, a trade

group for the industry, said it opposed mandatory reporting of

injuries and illnesses because there was " no public health need. "

The Council for Responsible Nutrition, which represents

manufacturers

of dietary supplements, said the new study painted " a biased picture

of the industry, " understating the benefits of supplements.

Annette Dickinson, the council's vice president for scientific and

regulatory affairs, said, " We are open to discussion of mandatory

reporting, at least for serious adverse events that present an

actual

risk of harm to the consumer. " But she said vitamins had been safely

used for many years without problems.

L. Young, general counsel of the American Herbal Products

Association, said: " The FDA does not evaluate the reports it

receives.

It's not using the existing tools. You don't set up a huge

registration system just because the FDA doesn't choose or want to

enforce a law that's been on the books for years. "

The report said the Food and Drug Administration had not established

" good manufacturing practices " to control the quality and quantity

of

ingredients used in dietary supplements. As a result, it said, the

government " cannot assume that products contain what is listed on

their labels, in the quantities listed. "

Dickinson and Young said the industry supported federal efforts to

define good manufacturing practices.

NYT-04-16-01 2140EDT

April 23, 2001

'oxyplus ' wrote:

====

-

- OxyPLUS is an unmoderated e-ring dealing with oxidative therapies, and ...'

> Take a look to the attachment.

March 9, 2002

Regarding the immunizations, I am leary to do my son's five year boosters,

especially since one of them is the second MMR. I work at a doctor's office

and my doctor even told me that the booster MMR is only because 5 percent of

the children that only get the first MMR may get measles, mumps or rubella.

BIG DEAL!

I just wondered what anybody else has decided as my son is approaching five

in May. We believe the vaccines, especially the MMR, combined with his weak

immune system could have triggered the autism. Whether it did or not, we

will probably never know, however, I think back to my generation (WAY BACK!)

as a child, and we were never given the MMR. We just caught measles and

mumps, and we are all here to talk about it!

Any feedback would be great and thanks!

Lavandowska

March 9, 2002

In a message dated 3/9/2002 2:42:03 PM Central Standard Time,

LAVJULIE@... writes:

> I am leary to do my son's five year boosters,

> especially since one of them is the second MMR.

You can have his titers run to see if he is already immune. If he is, you

don't have to worry about it.

March 11, 2002

What we recommend here with our kids is to get a titer and when it comes back

positive we send that plus a letter stating that the child does not need the

booster to the school. If the titer is negative we will have to come up with

something but I think that will be on a case by case basis. Kathy -NNY

March 11, 2002

Hi ,

For instance, I am not going to give MMR to my 6 y old typical child. She is

in privet school, so it is not a big issue. I do not know what Fraser think

about you decision.

Regina

Re: Digest Number 1048

Regarding the immunizations, I am leary to do my son's five year boosters,

especially since one of them is the second MMR. I work at a doctor's office

and my doctor even told me that the booster MMR is only because 5 percent of

the children that only get the first MMR may get measles, mumps or rubella.

BIG DEAL!

I just wondered what anybody else has decided as my son is approaching five

in May. We believe the vaccines, especially the MMR, combined with his weak

immune system could have triggered the autism. Whether it did or not, we

will probably never know, however, I think back to my generation (WAY BACK!)

as a child, and we were never given the MMR. We just caught measles and

mumps, and we are all here to talk about it!

Any feedback would be great and thanks!

Lavandowska

April 10, 2002

HOW WONDERFUL THIS GROUP EXISTS....

SO MUCH

LOVE.......SUPPORT........INSITE......ENERGY.....INTELLIGENCE.........

ALTHOUGH THIS GROUP DIDN'T EXIST WHEN MY TOM WAS

BORN.......1964.........I'M GLAD FOR THE DIMENSIONS NOW........

AT THE TIME........I FELT MY BATTLE WAS TRULY A SOLO.........

MY HUSBAND WAS NOT INVOLVED........AND NO REAL FRIENDS TO CONFIDE

IN........4 CHILDREN..........ONE YEAR APART........AND ALL THE

ACTIVITIES ASSOCIATED WITH PARENTING..........

SOMEHOW THOUGH..... I BECAME A WOMEN'S ACTIVIST...........PROTESTED THE

WAR IN VIET NAM..........CAMPAIGNED FOR BOBBY KENNEDY......WENT BACK TO

SCHOOL FOR MY DEGREE........AND WORKED PART-TIME.......

OF COURSE, I ISOLATED MY HUSBAND AT THE TIME..........

HE WANTED AN AT-HOME KINDA GAL.........

ALTHOUGH HE WAS NON-INVOLVED WITH EITHER OUR HOME OR THE

CHILDREN...........

SUBSEQUENTLY........I OPTED FOR A DIVORCE...........27 YEARS AGO......IN

FACT......

AND NOW........YEARS LATER.......HE HAS MELLOWED........LIVES IN UPPER

NY STATE.........AND

VISITS TWO...... OF HIS FOUR CHILDREN HERE IN FLORIDA......AND OUR

GRANDDAUGHTER ALMOST 13.......(AND OF COURSE TOM)........ONCE OR TWICE

A YEAR..........AND.......AFTER ALL THESE YEARS..........

WE HAVE COME FULL CIRCLE AND HE IS ALTHOUGH DISTANT

GEOGRAPHICALLY,......INVOLVED EMOTIONALLY...........

AND IT ONLY TOOK 27 YEARS........

HE WAS HERE LAST WEEK........WE HAD A ISP MEETING FOR TOM........I

COOKED A PRE-MEETING DINNER........AND THE GOOD NEWS IS...........

I DIDN'T STRANGLE HIM........

MUCH LOVE.

SHOSHANA

.......................S..H..A..L..O..M....................

http://community.webtv.net/shoshi8/serenade

http://community.webtv.net/shoshi8/liliesofthefield

April 10, 2002

Shoshana, I just love your take on things!! LOL!

Jackie, Mom to 14ds, 11, and Bradley 8

October 24, 2002

I think the statement you made about sticking your head in the sand that's

probably why they are acting the way they are today. That was un called for

its not the parents fault the child has a disibility! You just need to be

more sympathic with your comments and advice. Your child obviously has

problems also or you would not be on this site is that your fault? No

October 24, 2002

I too, thought people were being a little over critical of Charlene.

Sometimes it's just so hard and so frustrating to be a parent in general,

let alone one to an autistic child. Throwing water at a screaming, fit

throwing child rather than a cast iron frying pan seems not as drastic to

me now that I have a child with a disability. I've thought of duct tape

but I " m pretty sure that's illegal. The old count to 10 trick just

doesn't apply any more. Hang in there, Charlene, this too shall

pass...Or maybe not, but at least there's an endless supply of water on

hand!!

October 24, 2002

Thanks Rhonda. I did not take anything too derrogatory because she

said it as polite as possible. Wow I have gotten rude comments a thousand

times worse then that. I open myself up when I talk too openly on the

internet. ONe thing though the internet is alot easier to open up to then

locally. Locally I tell no one anything LOL

Duck tape is illegal and comes to mind but as long as I dont do what

is in my head then its OK LOLOLOL

All jokes aside I can do good with the kids for a while but then I

get tired over whelmed! for example if I had the kids 8 hours a day 7 days

a week I could do exactly what the so called experts say or people who have

normal children but when its constant my patients wow just like everyone

else on here. WE GET OVER WHELMED!

charlene

-- Re: Digest Number 1048