Re: being referred to hospice care due to declining health

[Guest guest]

Look, I don't know you, I don't know if this would be of help, but

this safe supplement helps with

some kinds of fibrotic lung diseases and its also very cheap in

supplement form..

you can even buy it in bulk.. Your doctor might be interested in

reading this..

I don't know if its relevant to your situation at all.

I'm sorry if this is intrusive in any way.. I'm just trying to help..

# Kinnula VL, Fattman CL, Tan RJ, Oury TD. Oxidative stress in

pulmonary fibrosis: a possible role for redox modulatory therapy. Am J

Respir Crit Care Med 2005;172:417–422.[Abstract/Free Full Text]

http://ajrccm.atsjournals.org/cgi/content/abstract/172/4/417

# Behr J, Maier K, Degenkolb B, Krombach F, Vogelmeier C.

Antioxidative and clinical effects of high-dose n-acetylcysteine in

fibrosing alveolitis: adjunctive therapy to maintenance

immunosuppression. Am J Respir Crit Care Med

1997;156:1897–1901.[Abstract/Free Full Text]

http://ajrccm.atsjournals.org/cgi/content/abstract/156/6/1897

On Tue, Nov 18, 2008 at 11:06 AM, julie <knightshotter@...> wrote:

> My PCP has referred me to hospice care because of declining health and

[Guest guest]

OOps.. I meant this one..

http://content.nejm.org/cgi/content/full/353/21/2229

High-Dose Acetylcysteine in Idiopathic Pulmonary Fibrosis

Maurits Demedts, M.D., Juergen Behr, M.D., Roland Buhl, M.D., Ulrich

Costabel, M.D., P.N., Dekhuijzen, M.D., Henk M. Jansen, M.D.,

MacNee, M.D., Michiel Thomeer, M.D., Benoit Wallaert, M.D.,

François t, M.D., G. Nicholson, M.D., K. Verbeken,

M.D., y Verschakelen, M.D., D.R. Flower, M.D.,

Frédérique Capron, M.D., Stefano Petruzzelli, M.D., De Vuyst,

M.D., Jules M.M. van den Bosch, M.D., Eulogio -Becerra, M.D.,

Giuseppina Corvasce, Ph.D., Ida Lankhorst, M.D., Marco Sardina, M.D.,

Mauro Montanari, Ph.D., for the IFIGENIA Study Group

ABSTRACT

Background Idiopathic pulmonary fibrosis is a chronic progressive

disorder with a poor prognosis.

Methods We conducted a double-blind, randomized, placebo-controlled

multicenter study that assessed the effectiveness over one year of a

high oral dose of acetylcysteine (600 mg three times daily) added to

standard therapy with prednisone plus azathioprine. The primary end

points were changes between baseline and month 12 in vital capacity

and in single-breath carbon monoxide diffusing capacity (DLCO).

Results A total of 182 patients were randomly assigned to treatment

(92 to acetylcysteine and 90 to placebo). Of these patients, 155 (80

assigned to acetylcysteine and 75 to placebo) had usual interstitial

pneumonia, as confirmed by high-resolution computed tomography and

histologic findings reviewed by expert committees, and did not

withdraw consent before the start of treatment. Fifty-seven of the 80

patients taking acetylcysteine (71 percent) and 51 of the 75 patients

taking placebo (68 percent) completed one year of treatment.

Acetylcysteine slowed the deterioration of vital capacity and DLCO: at

12 months, the absolute differences in the change from baseline

between patients taking acetylcysteine and those taking placebo were

0.18 liter (95 percent confidence interval, 0.03 to 0.32), or a

relative difference of 9 percent, for vital capacity (P=0.02), and

0.75 mmol per minute per kilopascal (95 percent confidence interval,

0.27 to 1.23), or 24 percent, for DLCO (P=0.003). Mortality during the

study was 9 percent among patients taking acetylcysteine and 11

percent among those taking placebo (P=0.69). There were no significant

differences in the type or severity of adverse events between patients

taking acetylcysteine and those taking placebo, except for a

significantly lower rate of myelotoxic effects in the group taking

acetylcysteine (P=0.03).

Conclusions Therapy with acetylcysteine at a dose of 600 mg three

times daily, added to prednisone and azathioprine, preserves vital

capacity and DLCO in patients with idiopathic pulmonary fibrosis

better than does standard therapy alone.

On Tue, Nov 18, 2008 at 8:08 PM, LiveSimply <quackadillian@...> wrote:

> Look, I don't know you, I don't know if this would be of help, but

> this safe supplement helps with

> some kinds of fibrotic lung diseases and its also very cheap in

> supplement form..

> you can even buy it in bulk.. Your doctor might be interested in

> reading this..

> I don't know if its relevant to your situation at all.

>

>

[Guest guest]

...so the actylcystein patients had less 'toxic' effects? Is that how

you read it?

--- In , LiveSimply <quackadillian@...>

wrote:

>> Conclusions Therapy with acetylcysteine at a dose of 600 mg three

> times daily, added to prednisone and azathioprine, preserves vital

> capacity and DLCO in patients with idiopathic pulmonary fibrosis

> better than does standard therapy alone.

[Guest guest]

Is this the one you mean?

http://content.nejm.org/cgi/content/full/353/21/2229

I don't know. How would *you* read it?

I just remembered seeing NAC mentioned in a search I had done earlier

that day.

When she mentioned the word " fibrosis " it came to mind.

NAC is amazing in how it opens up my own lungs when I am having

breathing issues..

(This time of year, I get issues all the time, even just

leaves..everywhere, can set my problems off...)

I can't speak for others, but I wanted to help. You saw all the

disclaimers, right?

On Wed, Nov 19, 2008 at 9:39 AM, barb1283 <barb1283@...> wrote:

> ..so the actylcystein patients had less 'toxic' effects? Is that how

> you read it?

>

I would be hard put to name any nutrient that I had heard of that did

more to help the body handle

randomly selected toxins than NAC. And it's cheap, too, and

increasingly widely available..

(although its far cheaper mail order if you shop around than at your

corner vitamin store.)

Whether it would help the body fight individual toxins is probably

very different for each one.

Some yes, some no. And there are millions of different toxins.

NAC even protects aganst noise-induced hearing loss. (Acta

Otorhinolaryngol Ital. 2006 Jun;26(3):133-9 PMID 17063982)

It may

IMO, NAC is a hell of a good aid to doctors. But nobody with a serious

illness should add anything to their treatment regimen without getting

their doctors input. If their doctor doesn't have the time to read up

on it, its time to get another doctor, if possible.

[Guest guest]

> >> Conclusions Therapy with acetylcysteine at a dose of 600 mg three

> > times daily, added to prednisone and azathioprine, preserves vital

> > capacity and DLCO in patients with idiopathic pulmonary fibrosis

> > better than does standard therapy alone.

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

Note the study says it looked at patients with IDIOPATHIC pulmonary

problems. We are on this list because we more or less know what causes

our problems. Therefore, it is possible to figure out or experiment

with this supplement. In fact, the lungs are improved with glutathione

and NAC is a precursor to its production along with other sulfur based

amino acids. However, a lot of chronically ill people have trouble with

the processing of sulfur and that is why we all do the disclaimers.

Yes, this is a good study but the population of people with pulmonary

problems is huge and we are a more restricted segment of that group.

So, I would test for deficiencies in amino acids first and also look at

homocysteine in your blood (should be low if broken down effeciently).

Then supplement as needed but recheck to see if you are having buildups

of of these same materials because you aren't using them. Of course,

some of us have pretty bad reactions to them right away (I can't even

take folic acid) which tells you a lot right there.

A very good line of inquiry.

Barbara Rubin

>

[Guest guest]

Interesting note Barb. I have had blood testing for amino acid

levels and they are very low across the board. I have felt that may

be one reason I feel so tired as amino acids/ or proteins build

muscle and one's heard is the most important muscle so one would feel

tired if not getting enough or not digesting proteins well. I've had

trouble with sulfur products as well, giving me a rash.

>

Note the study says it looked at patients with IDIOPATHIC pulmonary

> problems. We are on this list because we more or less know what

causes

> our problems. Therefore, it is possible to figure out or experiment

> with this supplement. In fact, the lungs are improved with

glutathione

> and NAC is a precursor to its production along with other sulfur

based

> amino acids. However, a lot of chronically ill people have trouble

with

> the processing of sulfur and that is why we all do the disclaimers.

>