Re: Conie we need to talk now!

[Guest guest]

Hi :-)

I hope you got some sleep last night....I didn't mean to get you all

riled (sp?) up. I mentioned the " infection-connection " only to find

out if there is a possibility that some of our past experiences have

resulted in our illnesses.

If there is a connection, we could/should channel our energies into

getting as healthy as we can....now's the time to really take a look

at our diets and try to get as much nutrition out of every bite. By

getting healthier, we not only tackle any infection more efficiently,

we can hopefully limit or avoid future diseases. If there is

absolutely no connection (which I personally doubt...but you know

me :-) we have lost nothing by improving our nutritional habits. We

benefit either way.

That's your best weapon in fighting this, . You have a lot of

energy, and I know you'll put it to great use. We can't always look

backwards and to apply blame....sometimes, it's just the way it is.

What we can do is try to prevent these things from happening again

and in the process, do what we can to get better.

Gee, this is beginning to sound like an info-mercial or something LOL

I know we can bat things around some more and find some answers.

Take care and have a great Saturday,

Connie H

>

>

> Back in May 1998 I worked in the main LAB lab at Great Lakes Navel

> (durring my intern), I did be come very ill 4 months into my MLT

> studies (I drew blood and proccecd the blood) and urine samples! I

> had to stop my intern in Aug of 99. Could thid be it? it sure as

hell

> makes sence now! I drew all the new recruts HIV tests and di all

the

> female blood Preg tests!

>

>

> PS. I dont think I can sleep tomightnow thnking about all of this!

> And how many of us were MT's, MLT', or Phlebotomists?

>

> Caonnie e-mail me at westernairegal @aol.com eith you # so we can

> talk more about this! Also The navy made me take TONS of shots

before

> I was accepted in the LAB and I have no idea what they gave me, it

> was 7 shots.

>

[Guest guest]

In a message dated 5/18/02 7:35:25 PM Pacific Daylight Time,

sharynn@... writes:

<<

Say, have any of you gotten a test for Platinum? >>

Sharyn, no, I have never heard of it. Please tell us more about it.

It's good to hear from you. How are you doing?

hugs

[Guest guest]

Hi there

Say, have any of you gotten a test for Platinum? I think they test it using a

hair sample. If you have a way of getting this test I sure would be very

interested.

Thanks

Sharyn

>

>

> Date: 2002/05/18 Sat AM 01:51:21 EDT

> To: Rpolychondritis

> Subject: Conie we need to talk now!

>

>

Back in May 1998 I worked in the main LAB lab at Great Lakes Navel

(durring my intern), I did be come very ill 4 months into my MLT

studies (I drew blood and proccecd the blood) and urine samples! I

had to stop my intern in Aug of 99. Could thid be it? it sure as hell

makes sence now! I drew all the new recruts HIV tests and di all the

female blood Preg tests!

PS. I dont think I can sleep tomightnow thnking about all of this!

And how many of us were MT's, MLT', or Phlebotomists?

Caonnie e-mail me at westernairegal @aol.com eith you # so we can

talk more about this! Also The navy made me take TONS of shots before

I was accepted in the LAB and I have no idea what they gave me, it

was 7 shots.

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

> Hi ,

>

> In today's (5-17-02) issue of the Wall Street Journal, there was an

> article that reminded me of our earlier discussion....that of the

> lack of clinical trials due to the lack of funds. I thought the

> article was very interesting in and of itself, but if you

substitute

> antibiotics instead of the prednisone and substitute RP instead of

> sepsis....you will see the similarities. It seems that this

> situation happens over and over again.

>

> Sending hugs,

>

> Connie

> here's the article:

> Why Cheap Drugs That Appear

> To Halt Fatal Sepsis Go Unused

>

> By THOMAS M. BURTON

> Staff Reporter of THE WALL STREET JOURNAL

>

>

> It was strictly happenstance that sent the doctor off on his quest.

A

> young mother hovering near death in a Connecticut hospital was

> misdiagnosed, and given a drug she wouldn't otherwise have gotten.

> She recovered.

>

> Then the doctor, G. Umberto Meduri, learned that what the woman

> actually had was sepsis, a devastating condition that has long been

> as baffling as it is deadly. Often beginning as a blood infection

> after surgery, sepsis can quickly turn lethal. It kills an

estimated

> 215,000 people in the U.S. annually -- more than the combined toll

of

> the worst cancers, of the lung and colon.

>

>

> 4th in a series: See previous articles in series

>

>

> The puzzling thing was that the drug this woman got was a steroid,

> supposedly worthless for sepsis. Research seeming to show this

> futility was common at the time. " In the late 1980s, anyone in our

> field would have said you're an idiot if you use steroids " for

> sepsis, says Dr. Meduri, who is now at the University of Tennessee

> Health Science Center in Memphis.

>

> What followed was 15 years of tantalizing but tiny studies that

> seemed to jibe with what happened in the Connecticut hospital. Now,

> Dr. Meduri and colleagues in the U.S. and Europe have accumulated a

> modest body of evidence that the deadliest forms of sepsis often

> yield to cheap, common steroids such as cortisone. A researcher at

> the University of Paris recently found that steroids led to nearly

a

> 30% drop in deaths from septic shock, a severe form of sepsis in

> which blood pressure plunges.

>

> If the approach is indeed effective, it would be big economic news:

> It typically costs less than $50. The only drug specifically

approved

> for severe sepsis is about $7,000 a dose.

>

> That drug, Eli Lilly & Co.'s newly approved Xigris, was the fruit

of

> huge studies costing hundreds of millions of dollars, and Lilly is

> spending lavishly to promote it. The Meduri approach languishes,

> because no one has ever done the large-scale studies that most

> doctors need to be convinced.

>

> • See what happens when an infection invades the body and how

it

can

> lead to sepsis, using the example of a respiratory infection.

>

>

>

>

> The steroids saga illustrates one reason expensive brand-name drugs

> don't face more competition from low-priced generics. There is

little

> incentive for big pharmaceutical companies -- the main financiers

of

> drug research -- to pay for studies of using steroids against

sepsis,

> because the steroids' patents have expired. The National Institutes

> of Health also turned Dr. Meduri down. It primarily funds basic

> scientific research, not human trials of drugs.

>

> Dr. Meduri, who finally got modest funding from a church-affiliated

> health-care foundation in Tennessee, has recently had to slash the

> size of what he hoped would be a major study, as his funding runs

> low. He has laid off some researchers and he lost one of his labs

> when the University of Tennessee reassigned it. Sitting in freezers

> are thousands of blood-plasma samples that might reveal which

> patients' genetics make them likeliest to benefit -- samples there

is

> no money to analyze.

>

> " Meduri has been a voice crying in the wilderness, " says J.

> Marini, a University of Minnesota medical professor and specialist

in

> critical care. " His data are intriguing, and consistent with my

> clinical experience. I have no doubt whatever that steroids have

> saved patients of my own. "

>

> It's a Catch-22: Because money is unavailable, only small studies

are

> possible. Because they are small, they are viewed as less than

> convincing, allowing skepticism to persist -- and money to remain

> unavailable. The drugs that draw the industry's heavy research and

> promotional money are the branded ones, which are also far more

> expensive.

>

> By all accounts, the prime skeptic is Gordon R. Bernard, a

prominent

> Vanderbilt University critical-care specialist. He was the chief

> investigator both on a 1987 study showing steroids ineffective, and

> on the main large study of Lilly's Xigris. Dr. Bernard has been

> sarcastic in his criticism of Dr. Meduri's work, attacking him in

> unusually personal terms. In a medical-conference debate with Dr.

> Meduri at Chicago's Drake Hotel in 1998, for instance, Dr. Bernard

> seemed to question Dr. Meduri's IQ. At the same conference, in a

> remark citing one of the steroids, Dr. Bernard said, " Elvis was

> spotted again in Memphis ... only three hours after Dr. Meduri was

> seen at the grave-site of Elvis at Graceland attaching

> methylprednisolone to the grave. "

>

> Dr. Bernard says he regrets his IQ remark. As for whether steroids

> used the way Dr. Meduri proposes could help with sepsis, he says

> it " is a fair hypothesis -- but give me some data. "

>

> Sepsis -- which is often the culprit when a newspaper story says

> someone died of " complications " from surgery or illness -- can

savage

> a young body as well as an old one. Shanna Carel, a member of the

> pompom squad at the University of Memphis, went out for pizza one

> night in 1998 and felt ill. Twenty-four hours later, she was

> diagnosed with meningitis from airborne bacteria. It swiftly

> progressed to septic shock and acute respiratory distress syndrome.

>

> Within hours, Ms. Carel was on a ventilator, fighting for her life.

> Given four weeks of low-dose, intravenous steroids in one of Dr.

> Meduri's studies, she survived. She now is 24 and a nursing student.

>

>

> Her story suggests why sepsis and the closely related acute

> respiratory distress syndrome have escaped broad awareness. No one

> suffers from them chronically. Patients usually either die -- as

> about a third of those with severe sepsis do -- or return to

general

> health in a few months. This doesn't make for support groups or

> publicity.

>

> Out of Control

>

> The body reacts to bacterial invaders such as Ms. Carel's with

> inflammation, a response that is normally beneficial. But in severe

> sepsis, the inflammation gets out of hand and turns into a raging

> forest fire instead of a controlled blaze. It can cause the liver,

> the lungs or other organs to simply shut down.

>

> The body normally regulates its inflammatory response with

steroids.

> A signal sent from the pituitary gland in the brain to the adrenal

> glands, sitting atop the kidneys, tells them to send out a steroid

> called cortisol. The cortisol's role is to prevent overproduction

of

> inflammatory chemicals. However, in sepsis, cells become less

> sensitive to the cortisol. It can't curb the inflammation.

>

> Two decades ago, doctors tried common steroids for sepsis. They

gave

> them in megadoses, for 24 hours or so. By 1987, this approach had

> been widely discredited by large-scale studies of human patients,

the

> most prominent of which was published by Vanderbilt's Dr. Bernard.

>

> The approach of Dr. Meduri and others such as Djillali ne at

the

> University of Paris is quite different. Instead of megadoses, they

> give steroids for days or weeks, intravenously, at doses of only 2%

> or less of those used in the 1980s. They believe synthetic steroids

> such as hydrocortisone and methylprednisolone can reactivate the

> cells' sensitivity to cortisol, curtailing inflammation.

>

> This may have been what helped Grady Marlow Jr., a retired

accountant

> and lawyer in Germantown, Tenn., who had a heart attack in late

1998.

> During a cardiac procedure, he breathed in stomach contents he had

> coughed up, developing sepsis and acute respiratory distress

> syndrome. He lingered for seven days on a ventilator. Then, given a

> low dose of methylprednisolone in a Meduri study, he improved

enough

> to have heart surgery. Now the 80-year-old widower is back home and

> doing well. He says he has become a regular at a Baptist Church in

> Memphis, where " there's a lot of widows. "

>

>

> Most doctors facing a sepsis case don't try the treatment Mr.

Marlow

> got. There's little legal or economic reason not to, because the

> steroids are approved drugs with long safety records. But some

> doctors aren't interested unless they see results from a large

trial,

> and many others have never heard of the treatment. Many doctors get

> most of their knowledge of new drug treatments from pharmaceutical

> companies, which have no interest in dispatching emissaries to talk

> about low-priced drugs with long-expired patents.

>

> By contrast, Lilly promotes Xigris through a large sales force and

> also pays 250 critical-care specialists to speak to colleagues

about

> the IV drug, for $1,000 to $1,500 per talk. Lilly also recently

> treated critical-care doctors to a concert by jazz singer-guitarist

> Benson during a conference in San Diego, and last year it

gave

> a dinner for other critical-care specialists during a Brussels

> medical conference. It says it has decided to stop providing such

> entertainment because of adverse public perceptions. Lilly has sold

> $43 million of Xigris in the drug's first full quarter on the

market.

>

> The case that piqued Dr. Meduri's interest came in 1987. He was on

> staff at Norwalk Hospital in Connecticut when Janet Machala, an

> artist, was hospitalized for a severe respiratory infection. A

> pathologist misread a biopsy slide and concluded she had a rare

> pneumonia, which called for a low dose of steroids over many days.

> Lingering near death on a mechanical respirator, Ms. Machala was

> hooked up to a steroid IV drip for four weeks. After the first four

> days, she was able to get off the respirator.

>

> Then Dr. Meduri found out she had actually had sepsis and acute

> respiratory distress syndrome. He continued to treat some sepsis

> cases with steroids at a low dose, had success, and published his

> results. A paper he wrote for Chest, a leading respiratory-disease

> journal, carried the provocative title, " Is the Right Drug Used the

> Wrong Way? "

>

> What was needed was a large study matching the treatment against a

> placebo. He sent out numerous grant requests to drug companies,

> government agencies and foundations. They all said no, including

> Upjohn Co., the maker of methylprednisolone. It had partly funded

the

> study that showed megadoses of the steroid ineffective. In

addition,

> the steroid's patent had expired.

>

> A decade later, after Upjohn became part of Pharmacia Corp., Dr.

> Meduri made a plea to Pharmacia's chief executive, Fred

> Hassan. " Because of this drug developed by your company, we have

seen

> a precipitous drop in morbidity and mortality in patients with

[acute

> respiratory distress syndrome]. It is unfortunate and disappointing

> that your company is unwilling to support this promising and life-

> saving effort, " Dr. Meduri wrote. A Pharmacia spokeswoman

says, " Drug

> companies get loads of requests to do studies, but given this

> background, we chose other priorities. "

>

> Desperate for money, Dr. Meduri turned to an unlikely source and

> finally struck paydirt. An official at Baptist Health Care Corp. in

> Memphis, a foundation that operates 17 hospitals, had heard of his

> work. It gave him funding for a clinical trial in patients with

late-

> stage acute respiratory distress syndrome.

>

> This work resulted in a Journal of the American Medical Association

> paper in 1998 concluding that " prolonged administration of

> methylprednisolone " was associated with " improvement in lung

injury "

> and " reduced mortality " in respiratory distress, which often

results

> from sepsis. Specifically, none of 16 patients who got steroids

from

> the beginning died. Five of the eight who started out on a placebo

> did.

>

> Dr. Bernard criticizes both the study's size and its methodology.

Its

> 24 patients contrast with the 1,690 in one study he supervised of

> Lilly's Xigris. And the steroid researchers, though they didn't

know

> which patients were getting the drug and which a placebo, switched

> the patients who weren't responding after 10 days to the other

> treatment. That move made it harder to analyze the results.

>

> " Gordon [bernard] is skeptical and Umberto [Meduri] is a big

> advocate. The middle ground is probably correct, " says another

> leading critical-care doctor, Philip Dellinger in Camden, N.J. He

> says the Meduri research is " a very impressive study, and I found

> encouraging the fact that there was a broad effect on inflammation.

> But it was a small number of patients. "

>

> Drop in Mortality

>

> A study by Dr. ne in France linked low-dose steroids to a 29%

> fall in deaths from septic shock. That appears to be a larger drop

in

> mortality than Xigris has shown in severe sepsis, and without the

> bleeding risk the Lilly drug entails. Lilly officials say they

> believe Xigris is superior. But " if steroid researchers are

> successful, that's fantastic, " says Elaine Sorg, head of Lilly's

> critical-care business. The French doctor's study, like Dr.

Meduri's,

> was far smaller than Lilly's.

>

> Dr. Meduri had hoped to enroll 200 patients in a new sepsis study

but

> had to limit it to 80 for lack of funding. As a result, he worries

> that this, too, " may not have the statistical power to show a

> mortality benefit. "

>

> But Dr. Meduri's fortunes may be changing. His group recently

> published an analysis showing that steroids called glucocorticoids

> lowered the levels of inflammatory chemicals in patients who

survived

> acute respiratory distress syndrome. One co-author was

> Chrousos, an authority on that type of steroid, who is also the

> National Institutes of Health's chief of pediatric and reproductive

> endocrinology. Dr. Chrousos has become an influential believer in

Dr.

> Meduri's ideas.

>

> He believes the NIH, which once declined to pay for Dr. Meduri's

> research, will do so now. " This basically says that patients with

> [acute respiratory distress syndrome] and early septic shock should

> be on glucocorticoids, " Dr. Chrousos says.

>

> --------------------------------------------------------------------

--

> ----------

>

> How Sepsis Can Occur

> What happens when an infection invades the body and how it can lead

> to sepsis, using the example of a respiratory infection.

>

> 1. Bacterial products or other inflammatory agents enter the lungs,

> activating a protein called NFkB. NFkB stimulates the production

> of " fighting " proteins called cytokines.

> 2. These cytokines are sent into the bloodstream to organs. The

> resulting inflammation can kill bacteria, but if unabated,

> inflammation can turn into sepsis and threaten vital organs.

> 3. When cytokines reach the brain's pituitary gland, it releases a

> hormone called ACTH.

> 4. ACTH flows through the bloodstream and stimulates the adrenal

> glands to produce a steroid called cortisol.

> 5. Cortisol attaches to cell proteins, called glucocorticoid

> receptors, regulating the ability of NFkB to stimulate cytokine

> production. When the regulation doesn't occur properly,

inflammation

> can spread, leading to sepsis. Dr. Meduri contends additional

> cortisol-like steroids can restart the normal process.

>

> Sources: WSJ Research; Merck Manual; University of Tennessee

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Someone from my other support group brought this up and I will try and see if I

can get more information regarding this. You know me..I still think RP has

something to do with chemical toxins that we have been exposed to and this may

be a key.

Just sent you email.

Sharyn

>

> From: RCColloran@...

> Date: 2002/05/18 Sat PM 10:38:27 EDT

> To: Rpolychondritis

> Subject: Re: Conie we need to talk now!

>

>

In a message dated 5/18/02 7:35:25 PM Pacific Daylight Time,

sharynn@... writes:

<<

Say, have any of you gotten a test for Platinum? >>

Sharyn, no, I have never heard of it. Please tell us more about it.

It's good to hear from you. How are you doing?

hugs

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU