My wife (age 51) detected above disease in October 2006.

She gets tired after climbing even 10 steps of staircase.

Doctor gave Steroids, which gave lot of side effects.

Now we have slowly stopped steroid treatment.

Allopathic doctor said there is no specific treatment and involves trial and error.

Now we have started Ayurvedic medicine.

Doctor says curing a disease is a slow process and may take more than one year.

Is there any sure shot medicine and involves quick recovery.

Pls share your experience.

P.J.LAKHAPATE
plakhapate@rediffmail.com

lung transplantation

High doses of oral corticosteroids (e.g., prednisone) are the usual treatment. Cytotoxic drugs such as cyclophosphamide and azathioprine have also been used. The response to corticosteroids is better in patients with more inflammation and less fibrosis noted on lung biopsy. Lung transplantation has been suggested for selected patients with end-stage pulmonary fibrosis. The outlook for recovery is generally poor for occupational dust diseases and idiopathic (no-known cause) interstitial pulmonary fibrosis in which the lungs progressively stiffen.

If you stick with Ayurvedic medicine I think you'll find its benefits outweigh those of conventional medicine. This is a type of practive that's been used for a very long time in India, they have tried many things and determined which help to relieve and prevent / cure illnesses. I myself find they usually give a great deal of energy, calmness, and help with the condition. If you continue following this there's no telling what sort of progress might be made. I certainly think this is the best choice for you.

Thanks for the reply.

Will Oxygen Therapy be useful in this case?

In Oxygen Therapy Oxygen Gas is used for breathing.

Instead of this whether Oxygeneted Water is useful ?

Pls share the experience.

P.J.LAKHAPATE
plakhapate@rediffmail.com

Recently in Australia it is found that the presence of Gasoline vapours in atmosphere provoks the Pulmonary Interstitial Fibrosis if it is in the initial stage.

If this is true, then the gas pollution may be the reason for provoking the disease of my wife because we stayed in Andheri (Mumbai suburb) for 2 months in conjested area where vehicular pollution is very high.

After knowing this reason , is there any medicine available for curing this disease?

Pls share your experience.

P.J.LAKHAPATE
plakhapate@rediffmail.com

Dear Mr. P.J.LAKHAPATE,

I gone through your message, my wife (age 43 yrs) is also sufferring from Pulmonary Fibrosis. I dont want to make much comment about the medicines but I am sure if Yogas/ Pranaayaam & Various Breathing Excercises may help a lot to your wife.


I will also welcome for any suggestions in this matter.

Ravi Kabra.

Mr. Ravi Kabra,
Pls let me know your contact details.
See your personal email also.
P.J.LAKHAPATE
M-9867069587
R-91-22-27702655

IVE HEARD TALK OF SOME CHEAP DRUG BEING TESTED...

i heard it on anther thread..

a cure for cancer... since cancer cells use a different, oxygen starved form of metabolism.... that.. this drugs.. turns on mitocondria and stuff and thus... allows cancer cells to use oxygen, which then causes the messed up cancer cells to simply die.

if this is true...

the pharmicuticals will never tell you.. since they cannot make money off of it... as the drug is cheap.

i cant remember the thread... it had links to a news story.

-MT

the pharmicuticals will never tell you.. since they cannot make money off of it... as the drug is cheap.
Of course they can make money. The cheaper it is to produce the higher the profit. They'll just charge what the market will bear.

The only treatment with documented effect in the endstage of the disease is oxygen and lung transplantation............

let her go, don't make her suffer. Love her in death.

Of course they can make money. The cheaper it is to produce the higher the profit. They'll just charge what the market will bear.

no... this particular drug... is so cheap... there would be no money to be made... but cancer could be cured... and it would cost the consumer about as much as an asprin.

i wish i could remember the links or thread.

-MT

http://www.sciforums.com/showthread.php?t=63450&highlight=CURE+CANCER

found it... CHECK IT OUT... its worth a try, if your dying anyway.

-MT

no... this particular drug... is so cheap... there would be no money to be made... but cancer could be cured... and it would cost the consumer about as much as an asprin.
And by that logic then, no-one would make aspirin because it's too cheap to make a profit on...
From the link:
The pay-off is that if DCA does work, it will be easy to manufacture and dirt cheap.
So there are intentions to manufacture, if the drug actually works.

My wife (age 51) detected above disease in October 2006....Pls share your experience....I own stock in:
Discovery Laboratories, Inc. Quoting from their PR of about a year ago: It "is developing its proprietary surfactant technology as Surfactant Replacement Therapies (SRT) for respiratory diseases. Few or no approved non-animal derived surfactants are available. Discovery's proprietary SRT is also being developed in an aerosolized form under the name Aerosurf(TM), for neonatal respiratory disorders. Discovery is preparing to conduct Phase 2 pilot studies with Aerosurf(TM), aerosolized SRT administered through nasal continuous positive airway pressure (nCPAP). Also for premature infants, Discovery concluded a Phase 2 trial of Surfaxin for Bronchopulmonary Dysplasia (BPD), also known as Chronic Lung Disease. Discovery and announced preliminary results of a Phase 2 trial to address Acute Respiratory Distress Syndrome (ARDS) in adults, and is developing aerosol to potentially address Acute Lung Injury (ALI), cystic fibrosis and other respiratory conditions."

DSCO, their stock symbol, is possibly the world's expert on non-cancer lung disease.
You might want to ask them, or at least visit www.discoverylabs.com

They have nothing on the market yet. - They would have except for some very bad luck. - of the hundreds of stability batches that were stable, one of the three designated as a "registration batch" was not stable for the full year. Stock fell dramatically and I bought some as if patient, it will do every well.

On comments about drug being to cheap to make - that is silly you just price it at a profit level. I also own stock in BARR & TEVA, two of the largest generic drug makers. They both, especially BARR, are making patent challenges every month to try to get right to sell drugs more cheaply than current patent holder. I do not own any "big pharma" but they have bought up some of the small early stage drug developers I did own, at large profits to me.

It is surprising to note that there is no medicine.

Is it a rare disease?

How many people die per year due to this disease ?

P.J.LAKHAPATE
plakhapate@rediffmail.com

Billy T,

Can you explain what is Surfactant Replacement Therapies (SRT)?

I am a Chemical Engr, so I will understand if you explain.

P.J.LAKHAPATE
plakhapate@rediffmail.com

Billy T,
Can you explain what is Surfactant Replacement Therapies (SRT)?
I am a Chemical Engr, so I will understand if you explain.You probably know more than me. DiscoveryLab's is a complex mix of about 8 agents (why they had some problems in meeting the year stability tests, I think) As I under stand it a "surfactant" is sort of a detergent. I am sure you know more than I do. Visit their web site, I gave it earlier. See especailly their discussion (if it is still available) of why the FDA's stability test failed. (Terrible bad luck as only one, but it was one of the three batches designated to FDA, among many dozens failed. This cost them months of investigation and has delayed comercialization by more than a year. - Millions of dollars lost, not to mention the deaths of many babies it would have saved.)

Here is a great website with all kinds of information, clinical trials, research and therapies. I hope you can find something to alleviate her symptoms and improve survival.

http://www.pulmonaryfibrosis.org/home.htm

At Fareynght's link you will find:

"...Published in the March issue of the journal Chest, the research shows that more than half of the patients treated with Viagra, also known medically as Sildenafil, improved their walking distance by at least 20 percent during a standard test to measure lung function.

"Over five million worldwide suffer from this devastating disease, so we are hopeful that this drug may prove an effective therapy for pulmonary fibrosis," said the study's principal investigator, Dr. David A. Zisman, medical director of UCLA's Interstitial Lung Disease Program and assistant professor of pulmonary and critical care medicine at the David Geffen School of Medicine at UCLA. Many patients with pulmonary fibrosis also have pulmonary hypertension, which constricts arteries and lessens blood flow to the lungs, resulting in diminished lung capacity and breathing difficulties. According to Zisman, Sildenafil may help breathing by opening or dilating blood vessels to allow more blood flow to the lungs.

In this pilot study, 14 idiopathic pulmonary fibrosis patients initially took a standard six-minute walking test. All patients were then given oral Sildenafil therapy for three months, followed by a second walking test to gauge performance changes. Researchers noted that 57 percent of the patients improved their walking distance by 20 percent or more. The average improvement in walking distance was 49 meters (161 feet). ..."

I am not sure, but think viagra basically increases the NO (or is it NO2 ?) in the blood. As the lungs are specaized for the exchange of gases with the blood, I would serieously look into which it is and then consider having her breadth air with a little of this "viagra gas" mixed in. Could start with low % and increase while monitoring for side effects. (Google "laughing gas" also as either NO or NO2 was extensively used by dentists years ago with only side effect being light headedness and inclination to laugh.)

Now my wife has started Pranayam (3 times a day).

This include Kapalbhati , Uddai, Bhastrika asanas.

A tremendous improvement is seen in one month.

Earlier she could not even walk 50 steps.

Now she can walk to and fro two kilometer per day without much problem.

Now climbing the stairecase is also not a big problem.

However it is a long way to go for further improvements.

Any suggestions for faster recovery.

P.J.LAKHAPATE
plakhapate@rediffmail.com

Now my wife has started Pranayam (3 times a day).

This include Kapalbhati , Uddai, Bhastrika asanas.

A tremendous improvement is seen in one month....Please keep posting her results, at least monthly. I am confident that mind does control much of the body's functioning, but have my doubts about long term effects when there is a physical problem.

I wish the best for you and her.

It will be really very pleasant and important for all of us to share their good and bad experiences about thius dreaded illness. I believe that use of Aloe Vera ( popularly known in India as Gwar Patha) may also help in this problem.

Pl come on and share your views/ experiances.

Dear Billy T. May I know your contact id to communicate with u.

...Dear Billy T. May I know your contact id to communicate with u.For now, just click on my name (top left this post) and send private msg to me. Explain why we can not communicate in the open posting. I do not like to carry out discussion in PMs, but use them almost exclusively to call attention to posts I think one may be interested in and have missed. I am very open - very little I keep private.

with this disease it is very much possible that one can lead normal life provided one should accept limitations. such as:-
1.he/she should know how much time he/she can work normally
2.take breaks when become tired/finds any symtomps of brethlessness
3.avoid the reaosns which gives breathlessness
4.avoid long trips, cold things , all other activities which leads to breathlessness
5.do regular excercises, yoga, breathing excercises etc.
6.take with full faith all the medicines
7.maintain a chart of how many times one faces problem in a day,weight chart etc..
8.continue with healthy diet


i believe above may help any patient to lead a normal life
i will come if anyone amends/further soggests about it.

Now my wife's health is much improved.

However due to low immunity she develops cough whenever there is cold climate or change in climate.

This hampers the progress achieved.

Improvement in immunity is a slow process.

Aurvedic doctor says entire process is very slow it may take another 6 months.

Any suggestions or experience for further improvement.

P.J.LAKHAPATE
plakhapate@rediffmail.com

Now my wife's health is much improved...
P.J.LAKHAPATE
plakhapate@rediffmail.comGlad to hear that (some time ago), but did not comment. CF is aterribel disease, often causoing death after years od increasing dibilation. I think there is no known cure, but here is some news just came to my (and the world's attention) which may be of interest to you and her:

"... promising results in an ongoing Phase 2a clinical trial for patients who carry the G551D mutation of CF. The drug is being developed by Vertex Pharmaceuticals Incorporated.

Patients who took the drug for 14 days showed significant improvements in several key indicators of cystic fibrosis, including lung function, nasal potential difference measurements and sweat chloride levels. The findings suggest that VX-770 improves function of what is known as the faulty CFTR protein. This early data is promising and could have important implications for studies of other drugs in development.

This is the first time that any potential therapy has improved the abnormal sweat chloride (salt) levels in a person with CF. Excessive sweat chloride is a key clinical indicator of cystic fibrosis. The "sweat test" is the traditional diagnostic test for CF.

"These early results are an extraordinary endorsement of our hypothesis-that small molecules can correct the basic defect and affect the clinical indicators of cystic fibrosis," said Robert J. Beall, Ph.D., president and CEO of the Foundation. "The emerging data for VX-770 represents the most exciting results we've seen from a Phase 2 trial and increase our confidence that we're on the right track."

The compound VX-770 resulted from a collaboration between the Foundation and Vertex. In 1998, the Foundation approached Aurora Biosciences (acquired by Vertex in 2001) and made an initial investment to use cutting-edge technology-known as high throughput screening-to find compounds to attack the core defect in CF. Since that time, the Foundation has invested $79 million in the project, and the two organizations have closely collaborated to advance VX-770 and a second CF compound, known as VX-809, through research and into development. ..."

Form:
http://www.medicalnewstoday.com/articles/102015.php

It will still be a very years before VX-770 is on the market, if it every is, but at least there is now some hope CF can be treated soon.

I have not noticed you active here for awhile, so am sending Email to you also. hope she is still at least holding her own against CF. I am not sure, but VX-770 appears to be designed for a type of CF that is associated with a particular genetic defect. You probably do not know if your wife has it. I do not think it iws known yet if VX-770 will help others without that origin of the problem. Also I do not know if Vertex's clinical group was selected to include only those that do - I bet that is the case as it would be worth the cost of screening potential patients to get better results / eventual FDA approval. (If VX-770 does not help, except in patients with that genetic error, and the trial included them, then it would need to be much larger and more costly to demonstrate stastically any favorable result that is real in the genetic defect patients.)

I will let you research it more. Tell me what yu find.

I own stock in Vertex, but hate to visit their web sight as stock is much cheaper now than what I paid for it. I think it will recover, if they get their main effort (on Heb C) to market at least a year before all competitors. (That still seem probable, but when I bought they were the only company with anything that seemed to be working.) It is still exhibit good saftey profile and quick virus "knock down" to undetectable levels, so I am holing on. - At least till near end of this year. (I sold some IBN at the peak of all times, just by luck, and now bought it back at just above half that price!) I bought it years ago and thus had about 600% profit. Near end of year I need to and will clear out a lot of "losers" for tax reasons. IBN is large Indian bank's ADR. Banks everywhere have been hit as have Indian stocks in general. I was dam lucky to sell only about 50 days ago essentially at the peak. Sometimes I feel like I still work - but as before, I get only part of the value I create. The IRS must love me. I just hate to see GWB using them to kill more people than Saddam ever did.

Last year PFT (PULMONARY FUNCTIONAL TEST) was carried out on 19-02-2007.
This year same test repeated on 1-04-2008.
The results are encouraging.
FVCL (Forced Vital Capacity ,Liters)improved from 37 to 54%
FEV1L(Forced Expiratory Volume in 1 Sec) improved from 49 to 72%
PEF L/S (Peak Expiratory Flow Lit /Sec ) improved from 39 TO 63%

Ayurvedic doctors are hopeful about further improvement.
We may have to wait for another one year as progress is very slow.
Any sugestions for further fast improvemets?


P.J.LAKHAPATE
plakhapate@rediffmail.com
m-91-9867069587
t-91-22-27702655

http://www.wikihow.com/Do-Pranayam

Billy T,

Can you explain what is Surfactant Replacement Therapies (SRT)?

I am a Chemical Engr, so I will understand if you explain.

P.J.LAKHAPATE
plakhapate@rediffmail.com

The fundamental rationale for surfactant replacement is to help restore the natural surfactant film and reduce surface tension at the air-liquid interface, thus reducing the tendency for alveolr collapse and improving oxygenation through a reduction in shunt. Think of two planes of glass with moisture between them, try pulling them apart. Replacement therapies are effective in neonates but results in adult patients have been less promising. Research continues as we speak.

...Research continues as we speak.Yes. I own share in Discovery Labs, www.discoverylabs.com. They would have their SRT on the market by now if not for some very bad luck. They had to designate three samples as "stability batches" - were going for a year of approved shelf life, and one failed. About 40 others did not! The FDA has it rules, but is taking this into consideration and they did very thorough investigation and are almost sure they know why that one failed. Their SRT is a very complex mix of many "active ingredients." I would be sitting on huge profit if not for their bad luck as got in early. (One of my daughter’s lives near them in PA and there was a story in the local free advertisement circular one day I read while visiting her.)

It is a shame. - A lot of babies have died due to that bad luck. Their SRT is better than the stuff now used, which comes from pig's lungs and is not pure or nearly as well characterized as Discovery's 100% synthetic version. The pig stuff is also clinically inferior as well.

Dear Ravi Kabra,

Health of my wife has improved a lot due to Pranayam and Yogasana.

Rarely she has a cough.She takes Asthalin for that purose.

She walks about 4 km every day.

How about health of your wife?

P.J.LAKHAPATE

Sorry I could not continue this discussion for a long time, I believe that following things can definetly help a patient :-

1 . Patient must be kept in positve frame of mind
2 . General health condition such as weight, strength, food etc. should be given proper attention.
3. Breathing excercise- A must as much as possible
4. Medicines prescribed by Dr.
5. Pray from god, the almighty

In last one year at least 7 persons from all over the world ( USA, Hydrabad, U.P.,Dubai, Delhi , Thane , Mumbai ) have contacted me for the treatment of Pulmonary Interstitial Fibrosis Disease.

They came to know about me through this blog only.

Anybody who wants to know more about the treatment about this disease can contact me.

P.J.LAKHAPATE
plakhapate@gmail.com
M-91-9867069587
T-91-22-27702655

...Anybody who wants to know more about the treatment about this disease can contact me. ... P.J.LAKHAPATEOr for the latest scientifice research hear and see slides of the Intermune presentation of 6August08 at:

http://audability.com/AudabilityAdmin/Clients/BMO/10605_85200880000AM/primary_d2-rm3_intermune.aspx

There, for the first time, the Shionogi data (on the same drug) is available also. Unfortunately this is a terrible disease. No treatment that has any scientific evidence for working currently exists. The drug Intermune is developing* is unfortunatly not a cure, but does significantly slow the progression of the desease.
---------------
*and licensed to Shionogi for development in Japan where a shorter term test could get it approved more quickly.

PS that presentation should be available for a few weeks at least, but typically these company efforts to get funds to continue development programs disappear in a month or so or less.

I expect that support therapies (oxygen, for example) alone will not resolve the problem. She will probably need to be primarily treated with a combination of drugs and surgery.

You have to find a balance. Find the level of pharmaceuticals that is acceptable and use other means to augment the primary care method.