Re: new member intro

[Guest guest]

- What was the product that was giving off the formaldehyde

gas??

Debbie

>

> I would like to introduce myself and share my story. Hopefully,

something in it might help another person.

>

> My name is . I am 59 years young. I was diagnosed with PF

after an open lung biopsy 3 years ago. It was caused, it seems, by

exposure to low levels of formaldehyde over about year (new product

in our home). This product was tested and found to be off gassing

formaldehyde. My blood antigens to formaldehyde were 350% above

normal safe limits. All the damage occurred in a 12 mo period! For

the sake of those with IPF, you might want to know that 'chemical

pneumanitis' is always preceded by an 'eczema-like' skin rash! This

fact was published in a United Nations report in 1999 after some

scientific group commissioned by the WHO spent 25 years researching

pulmonary diseases caused by low-molecular weight water-soluble

chemicals.

>

> >

> mary

>

>

>

>

>

>

>

> marymassung

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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

> Bring words and photos together (easily) with

> PhotoMail - it's free and works with Yahoo! Mail.

>

[Guest guest]

mary, Are you still there? You could help this group if you wanted to. Your knowledge would be of great value to us. I was looking back to older posts and your's caught my attention. Please respond. Grey PS I guess i've been in shock and could not see clearly.

new member intro

I would like to introduce myself and share my story. Hopefully, something in it might help another person.

My name is . I am 59 years young. I was diagnosed with PF after an open lung biopsy 3 years ago. It was caused, it seems, by exposure to low levels of formaldehyde over about year (new product in our home). This product was tested and found to be off gassing formaldehyde. My blood antigens to formaldehyde were 350% above normal safe limits. All the damage occurred in a 12 mo period! For the sake of those with IPF, you might want to know that 'chemical pneumanitis' is always preceded by an 'eczema-like' skin rash! This fact was published in a United Nations report in 1999 after some scientific group commissioned by the WHO spent 25 years researching pulmonary diseases caused by low-molecular weight water-soluble chemicals. Before I share the rest of the info, I want everyone reading this to understand that my situation may be different than the norm in that my exposure to the offending substance (formaldehyde) had a definite beginning and a definite end. If it had been ongoing for several years or if the source had not been found and removed, my situation might have had a very different outcome. Also, I was in very good health before the exposure. Because I got soooooo sick soooo rapidly and my husband rightly guessed (and removed) the source....the long term prognosis was in my favor (although not even the MDs gave me much hope in the early months after the open lung biopsy) I understand that others may not benefit from this information. I am sharing it in the hopes that even one might benefit. My exposure to formaldehyde began in 3/2002. I started experiencing shortness of breath in 8/2002. I started experiencing flu-like symptoms which came and went(and extreme dizziness...to the point of falling without warning) in 12/2002. I first saw the MD in mid January. At that time, my 02 sat was 97 and my lungs sounded fine. However, the MD could not identify the rash which was spreading over my entire body! When I went back to the MD in Feb, my 02 sat was 92. My lungs still sounded clear and an EKG was normal. However, the skin rash was worse. Because the women in my family are prone to heart disease, the MD decided to have a stress test done. No one rushed it. Three weeks later, during the ultrasound, the cardiologist cancelled the test because my 02 sat was 82 and I gave evidence of pulmonary hypertension. Two days later (3/5)03), an angiogram was done.

The angiogram revealed my heart was strong and my arteries were 'sqeeky clean'. However, I had pulmonary hypertension and an 02 sat in the 70's. I was told to see a pulmonologist and, luckily, was referred to the best in the state! The CT showed extensive honeycombing and inflammation in my lungs. A PFT showed only 32% 02 diffusion and low lung volume. I was scheduled for an open lung biopsy. While I was in the hospital for the open lung biopsy, my pulmonologist, my cardiologist, and the surgeon were preparing my husband for my death! At the time, death would have been a welcome relief! (The open lung biopsy revealed severe scarring and considerable inflammation.) However..... I did not die. Instead, I began fighting back even though I was on 02 (6LPM) 24/7 and slept 16 hours a day + naps! Since my lungs had minimal elasticity (were like tissue paper instead of jello), I had to do breathing exercises several times a day for about a year (to reteach my lungs how to expand and contract). I learned yoga....esp "pranayama" for seated deep breathing and tai chi for breathing with movement. In the beginning, I coud not breathe and move, breathe and eat....you get the picture. It was because I began to improve...albeit gradually...that we realized we had correctly determined the source of the problem. (The offending product had been removed while I was in the hospital. I had to spend a week in an 'extended stay' hotel after leaving the hospital to insure I would not re-enter a 'contaminated' environment.) After the next PFT (6/03) which showed a 3% increase in 02 diffusion, I was put in rehab. Although rehab wanted me to use a treadmill, it was counterproductive. So was walking any distance. However, I did learn from my pulmonologist that rehab experts are the ones who determine LPM of 02 through this intensive exercise program. The hospital put me on 6 LPM (24/7) but the rehab people adjusted this down to 5 LPM (24/7 continuous flow). Once I understood the purpose of exercise, I got my own pulseoxymeter so I could monitor myself. I started doing gentle yoga stretches (and I am a rank amateur with flexibility issues), tai chi forms (which took me months to learn from videos). These paid off. In 12/03, my 02 diffusion was 42%! (I refused all steroids.) During this same period, I attempted weight training but had many setbacks.

After about 18 mos (6/2004), I was down to 4 LPM and could be 'active' for 3 hours per day.....slow walking with rests. I needed only 12 hours sleep + naps instead of 16. My husband no longer needed to eat TV dinners regularly and I could keep up with the laundry! I accomplished all this with 2 dogs, 2 cats, and several birds! The 2nd PFT (5/2003) showed improvement of 3% in diffusion but no change in lung volume. The 3rd PFT (12/2003) showed a 7% improvement in diffusion but no change in lung volume. The 4th PFT (6/2004) showed no change in either diffusion or volume. At this point, I was at 42% diffusion. I was told to expect no further changes. At this point, another factor came into play. DIET I have a PhD in holistic nutrition and am a degreed herbal nutritionist. During this first year (5/2003-6/2004), I was focusing my diet on cleansing my body of the formaldehyde (in case any remained in my body). However, my ability to weight train was met with many frustrations. I now realize this was because I was not consuming enough animal protein!

About this time (6/2004), I met a man on the internet who recommended I read WE WANT TO LIVE by Aajonus Vonderplanitz. It was about eating RAW GRASS-FED EEF, RAW MILK and RAW BUTTER from GRASS-FED COWS and RAW EGGS from free-ranging hens to HEAL AND REBUILD the body after any major tauma.

At first, I recoiled at the thought of eating raw animal flesh but finally felt I had nothing to lose (after talking to others who had done this with good results for other diseases). First I had to find a source of these foods. Then I began small....2 oz a day for about a week to build up my intestinal flora. Then, for 3 mos, I ate about 8 oz of raw beef a day and either drank 8 oz of raw milk or ate 2 tbsp of raw butter. (The milk had to be whole milk for its fat content.) Results..... The 5th PFT (12/2004) showed another 5% increase in diffusion and a whopping 20% increase in lung volume! This put my 02 diffusion at 47%. Also, I was able to reduce my supplemental 02 from 4LPM to 3LPM.The respiratory therapist (who had been doing all my tests) wanted to know what I was doing as she had never seen such a dramatic increase after a plateau. My pulmonologist wanted the name of the book! My 6th PFT (June of 2005) showed another 5% increase in diffusion but no further increase in lung volume. This put my diffusion at 52%. Knowing I was now out of the 'critical' stage, at the recommendation of my pulmonologist, my husband closed his business so we could relocate to an elevation of less than 1000' where, hopefully, I would not need supplemental 02 during the day. We moved from SLC (elevation of 4800') to San Marcos, Tx (elevation 600'). (For every drop of 1000' in elevation, supplemental 02 can be reduced by 1 LPM.) I still need it at night. On Friday, I will have my next PFT. To what do I attribute this gradual increase in diffusion (and the dramatic increase in lung volume the one 6 mos period)? I spent many hours of research after that one time of dramatic increase (from consuming raw grass-fed beef and raw dairy from grass fed cows and raw eggs from free-ranging hens). I learned that the flesh of grass-fed animals is very high in CLA (a fatty acid that promotes healing and, supposedly, the breakdown of scar tissue). Also, it seems that the fat that marbles lean grass-fed animals and their products are also very high in other healing agents including palmetic acid. (Grain-fed animals have very low levels of CLA and palmetic acid as these come from wild grasses.) Finally, the animal protein was needed to rebuild damaged tissue. Although I no longer eat the raw eggs or drink raw milk (too hard to get), I still eat wild tuna, pastured beef, and free-ranging chicken after only lightly searing them. They are still basically raw so that I get the benefit of the CLA. When in a restaurant, I order beef VERY rare. Although there may not be much CLA in this meat, what is there is better than nothing. One other factor may or may not be involved. As I continued my research (after the 4th PFT), I learned that the lungs rely very heavily on palmitic acid for optimal functioning. The raw fat of grass fed aminals is very high in palmitic acid. However, VIRGIN PALM FLOWER OIL is even higher in palmetic acid. This oil also has all the precursors for Vitamin A and Vitamin E! Vitamin E is a potent healer. It has also been known to soften scar tissue. Most Vit E capsules have only 2-3 forms of Vit E. Virgin Palm Oil has ALL the precursors for all the facets of vit E. I get my Virgin Palm Flower Oil from an internet company called Tropical Traditions (www.tropicaltraditions.com) Virgin Palm Flower Oil is a bright red-orange color and has no flavor. I use about a tsp on baked potatoes or toast or any other place I might otherwise have used butter...including popcorn. I don't worry about the calories or the fact that is is a saturated fat. Raw (unrefined) palm oil is actually healthy! What about exercise? Until I came to San Marcos, my exercise was primarily yoga and tai chi. I tried weights but with only limited results and many setbacks. This was because I did not know how to proceed properly (with PF) and did not understand the importance of consuming animal protein BEFORE and AFTER a weight-training sesson. Currently, I do weight-training for about 30 minutes every other day (or 15 minutes daily). I do a low impact gentle aerobics (using videos) about 2 times a week. More than that causes me to have a set back. I still do tai chi and yoga but in conjuction with the other exercises (tai chi after weight-training and yoga after aerobics). I have now added QiGong to my program as I have finally found a grand master in qigong (the healing form of tai chi) who is teaching me the tai chi forms that increase oxygenation of the body with complete removal of C02. All this (diet and exercise) was a gradual process with many setbacks. It included creating a new vocabulary for exercise (for myself so that I could have a way of describing what I was experiencing). It paid off not only for myself but for a dear friend whose asthma became life-threatening when when she was exposed to toxic black mold for several years. She is finally improving after about 2 years of being non-functioning. She can finally lift 2,3, 5# hand weights (took about 3 months) and can do a 30 minute gentle aerobics program. BTW, this woman weighs 350#s! Her resting heart rate has dropped from about 90 (6 mos ago) to 60. She can control her breathing (during aerobic exercise) until her heart rate is about 120. (She exercises only as long as she can control abdominal breathing.) Prior to that, she could not exercise at all because she would be unable to breathe as soon as her heart rate reached 100....remember, she was starting the exercise at 90 bpm!. If anyone can benefit from this information, I will be glad I shared it. mary

marymassung

Bring words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail.

[Guest guest]

Hey, Grey, what is going on? What are you in shock about? Barb in KYjose singletary wrote: mary, Are you still there? You could help this group if you wanted to. Your knowledge would be of great value to us. I was looking back to older posts and your's caught my attention. Please respond. Grey PS I guess i've been in shock and could not see clearly. new member intro I would like to introduce myself and share my story. Hopefully, something in it might help another person. My name is . I am 59 years young. I was diagnosed with PF after an open lung biopsy 3 years ago. It was caused, it seems, by exposure to low levels of formaldehyde over about year (new product in our home). This product was tested and found to be off gassing

formaldehyde. My blood antigens to formaldehyde were 350% above normal safe limits. All the damage occurred in a 12 mo period! For the sake of those with IPF, you might want to know that 'chemical pneumanitis' is always preceded by an 'eczema-like' skin rash! This fact was published in a United Nations report in 1999 after some scientific group commissioned by the WHO spent 25 years researching pulmonary diseases caused by low-molecular weight water-soluble chemicals. Before I share the rest of the info, I want everyone reading this to understand that my situation may be different than the norm in that my exposure to the offending substance (formaldehyde) had a definite beginning and a definite end. If it had been ongoing for several years or if the source had not been found and removed, my situation might have had a very different outcome. Also, I was in very good

health before the exposure. Because I got soooooo sick soooo rapidly and my husband rightly guessed (and removed) the source....the long term prognosis was in my favor (although not even the MDs gave me much hope in the early months after the open lung biopsy) I understand that others may not benefit from this information. I am sharing it in the hopes that even one might benefit. My exposure to formaldehyde began in 3/2002. I started experiencing shortness of breath in 8/2002. I started experiencing flu-like symptoms which came and went(and extreme dizziness...to the point of falling without warning) in 12/2002. I first saw the MD in mid January. At that time, my 02 sat was 97 and my lungs sounded fine. However, the MD could not identify the rash which was spreading over my entire body! When I went back to the MD in Feb, my 02 sat was 92.

My lungs still sounded clear and an EKG was normal. However, the skin rash was worse. Because the women in my family are prone to heart disease, the MD decided to have a stress test done. No one rushed it. Three weeks later, during the ultrasound, the cardiologist cancelled the test because my 02 sat was 82 and I gave evidence of pulmonary hypertension. Two days later (3/5)03), an angiogram was done. The angiogram revealed my heart was strong and my arteries were 'sqeeky clean'. However, I had pulmonary hypertension and an 02 sat in the 70's. I was told to see a pulmonologist and, luckily, was referred to the best in the state! The CT showed extensive honeycombing and inflammation in my lungs. A PFT showed only 32% 02 diffusion and low lung volume. I was scheduled for an open lung

biopsy. While I was in the hospital for the open lung biopsy, my pulmonologist, my cardiologist, and the surgeon were preparing my husband for my death! At the time, death would have been a welcome relief! (The open lung biopsy revealed severe scarring and considerable inflammation.) However..... I did not die. Instead, I began fighting back even though I was on 02 (6LPM) 24/7 and slept 16 hours a day + naps! Since my lungs had minimal elasticity (were like tissue paper instead of jello), I had to do breathing exercises several times a day for about a year (to reteach my lungs how to expand and contract). I learned yoga....esp "pranayama" for seated deep breathing and tai chi for breathing with movement. In the beginning, I coud not breathe and move, breathe and eat....you get the picture. It was because I began to improve...albeit gradually...that we realized we had correctly determined the

source of the problem. (The offending product had been removed while I was in the hospital. I had to spend a week in an 'extended stay' hotel after leaving the hospital to insure I would not re-enter a 'contaminated' environment.) After the next PFT (6/03) which showed a 3% increase in 02 diffusion, I was put in rehab. Although rehab wanted me to use a treadmill, it was counterproductive. So was walking any distance. However, I did learn from my pulmonologist that rehab experts are the ones who determine LPM of 02 through this intensive exercise program. The hospital put me on 6 LPM (24/7) but the rehab people adjusted this down to 5 LPM (24/7 continuous flow). Once I understood the purpose of exercise, I got my own pulseoxymeter so I could monitor myself. I started doing gentle yoga stretches (and I am a rank amateur with flexibility issues), tai chi forms

(which took me months to learn from videos). These paid off. In 12/03, my 02 diffusion was 42%! (I refused all steroids.) During this same period, I attempted weight training but had many setbacks. After about 18 mos (6/2004), I was down to 4 LPM and could be 'active' for 3 hours per day.....slow walking with rests. I needed only 12 hours sleep + naps instead of 16. My husband no longer needed to eat TV dinners regularly and I could keep up with the laundry! I accomplished all this with 2 dogs, 2 cats, and several birds! The 2nd PFT (5/2003) showed improvement of 3% in diffusion but no change in lung volume. The 3rd PFT (12/2003) showed a 7% improvement in diffusion but no change in lung volume. The 4th PFT (6/2004) showed no change in either diffusion or volume. At this point,

I was at 42% diffusion. I was told to expect no further changes. At this point, another factor came into play. DIET I have a PhD in holistic nutrition and am a degreed herbal nutritionist. During this first year (5/2003-6/2004), I was focusing my diet on cleansing my body of the formaldehyde (in case any remained in my body). However, my ability to weight train was met with many frustrations. I now realize this was because I was not consuming enough animal protein! About this time (6/2004), I met a man on the internet who recommended I read WE WANT TO LIVE by Aajonus Vonderplanitz. It was about eating RAW GRASS-FED EEF, RAW MILK and RAW BUTTER from GRASS-FED COWS and RAW EGGS from free-ranging hens to HEAL AND REBUILD the body after any major tauma. At first, I recoiled at the thought of eating raw animal flesh but finally felt I had nothing to lose (after talking to others who had done this with good results for other diseases). First I had to find a source of these foods. Then I began small....2 oz a day for about a week to build up my intestinal flora. Then, for 3 mos, I ate about 8 oz of raw beef a day and either drank 8 oz of raw milk or ate 2 tbsp of raw butter. (The milk had to be whole milk for its fat content.) Results..... The 5th PFT (12/2004) showed another 5% increase in diffusion and a whopping 20% increase in lung volume! This put my 02 diffusion at 47%. Also, I was able to reduce my supplemental 02 from 4LPM to 3LPM.The respiratory therapist (who had been doing all my tests) wanted to know what I was doing as she had never seen such a dramatic increase after a plateau.

My pulmonologist wanted the name of the book! My 6th PFT (June of 2005) showed another 5% increase in diffusion but no further increase in lung volume. This put my diffusion at 52%. Knowing I was now out of the 'critical' stage, at the recommendation of my pulmonologist, my husband closed his business so we could relocate to an elevation of less than 1000' where, hopefully, I would not need supplemental 02 during the day. We moved from SLC (elevation of 4800') to San Marcos, Tx (elevation 600'). (For every drop of 1000' in elevation, supplemental 02 can be reduced by 1 LPM.) I still need it at night. On Friday, I will have my next PFT. To what do I attribute this gradual increase in diffusion (and the dramatic increase in lung volume the one 6 mos period)? I spent many hours of research after that one time of dramatic increase (from

consuming raw grass-fed beef and raw dairy from grass fed cows and raw eggs from free-ranging hens). I learned that the flesh of grass-fed animals is very high in CLA (a fatty acid that promotes healing and, supposedly, the breakdown of scar tissue). Also, it seems that the fat that marbles lean grass-fed animals and their products are also very high in other healing agents including palmetic acid. (Grain-fed animals have very low levels of CLA and palmetic acid as these come from wild grasses.) Finally, the animal protein was needed to rebuild damaged tissue. Although I no longer eat the raw eggs or drink raw milk (too hard to get), I still eat wild tuna, pastured beef, and free-ranging chicken after only lightly searing them. They are still basically raw so that I get the benefit of the CLA. When in a restaurant, I order beef VERY rare. Although there may not be much CLA in this meat, what is there is better

than nothing. One other factor may or may not be involved. As I continued my research (after the 4th PFT), I learned that the lungs rely very heavily on palmitic acid for optimal functioning. The raw fat of grass fed aminals is very high in palmitic acid. However, VIRGIN PALM FLOWER OIL is even higher in palmetic acid. This oil also has all the precursors for Vitamin A and Vitamin E! Vitamin E is a potent healer. It has also been known to soften scar tissue. Most Vit E capsules have only 2-3 forms of Vit E. Virgin Palm Oil has ALL the precursors for all the facets of vit E. I get my Virgin Palm Flower Oil from an internet company called Tropical Traditions (www.tropicaltraditions.com) Virgin Palm Flower Oil is a bright red-orange color and has no flavor. I use about a tsp on baked potatoes or toast or any other

place I might otherwise have used butter...including popcorn. I don't worry about the calories or the fact that is is a saturated fat. Raw (unrefined) palm oil is actually healthy! What about exercise? Until I came to San Marcos, my exercise was primarily yoga and tai chi. I tried weights but with only limited results and many setbacks. This was because I did not know how to proceed properly (with PF) and did not understand the importance of consuming animal protein BEFORE and AFTER a weight-training sesson. Currently, I do weight-training for about 30 minutes every other day (or 15 minutes daily). I do a low impact gentle aerobics (using videos) about 2 times a week. More than that causes me to have a set back. I still do tai chi and yoga but in conjuction with the other exercises (tai chi after weight-training and yoga after aerobics).

I have now added QiGong to my program as I have finally found a grand master in qigong (the healing form of tai chi) who is teaching me the tai chi forms that increase oxygenation of the body with complete removal of C02. All this (diet and exercise) was a gradual process with many setbacks. It included creating a new vocabulary for exercise (for myself so that I could have a way of describing what I was experiencing). It paid off not only for myself but for a dear friend whose asthma became life-threatening when when she was exposed to toxic black mold for several years. She is finally improving after about 2 years of being non-functioning. She can finally lift 2,3, 5# hand weights (took about 3 months) and can do a 30 minute gentle aerobics program. BTW, this woman weighs 350#s! Her resting heart rate has dropped from about 90 (6 mos ago) to 60. She can control her breathing (during aerobic

exercise) until her heart rate is about 120. (She exercises only as long as she can control abdominal breathing.) Prior to that, she could not exercise at all because she would be unable to breathe as soon as her heart rate reached 100....remember, she was starting the exercise at 90 bpm!. If anyone can benefit from this information, I will be glad I shared it. mary marymassung Bring words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail.

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice.

[Guest guest]

Hey Barb, When I said I have been in shock meant that I was so consumed with my condition that I didn't recognise how important 's contributions could be to this group. Hope you have a good night------Grey

new member intro

I would like to introduce myself and share my story. Hopefully, something in it might help another person.

My name is . I am 59 years young. I was diagnosed with PF after an open lung biopsy 3 years ago. It was caused, it seems, by exposure to low levels of formaldehyde over about year (new product in our home). This product was tested and found to be off gassing formaldehyde. My blood antigens to formaldehyde were 350% above normal safe limits. All the damage occurred in a 12 mo period! For the sake of those with IPF, you might want to know that 'chemical pneumanitis' is always preceded by an 'eczema-like' skin rash! This fact was published in a United Nations report in 1999 after some scientific group commissioned by the WHO spent 25 years researching pulmonary diseases caused by low-molecular weight water-soluble chemicals. Before I share the rest of the info, I want everyone reading this to understand that my situation may be different than the norm in that my exposure to the offending substance (formaldehyde) had a definite beginning and a definite end. If it had been ongoing for several years or if the source had not been found and removed, my situation might have had a very different outcome. Also, I was in very good health before the exposure. Because I got soooooo sick soooo rapidly and my husband rightly guessed (and removed) the source....the long term prognosis was in my favor (although not even the MDs gave me much hope in the early months after the open lung biopsy) I understand that others may not benefit from this information. I am sharing it in the hopes that even one might benefit. My exposure to formaldehyde began in 3/2002. I started experiencing shortness of breath in 8/2002. I started experiencing flu-like symptoms which came and went(and extreme dizziness...to the point of falling without warning) in 12/2002. I first saw the MD in mid January. At that time, my 02 sat was 97 and my lungs sounded fine. However, the MD could not identify the rash which was spreading over my entire body! When I went back to the MD in Feb, my 02 sat was 92. My lungs still sounded clear and an EKG was normal. However, the skin rash was worse. Because the women in my family are prone to heart disease, the MD decided to have a stress test done. No one rushed it. Three weeks later, during the ultrasound, the cardiologist cancelled the test because my 02 sat was 82 and I gave evidence of pulmonary hypertension. Two days later (3/5)03), an angiogram was done.

The angiogram revealed my heart was strong and my arteries were 'sqeeky clean'. However, I had pulmonary hypertension and an 02 sat in the 70's. I was told to see a pulmonologist and, luckily, was referred to the best in the state! The CT showed extensive honeycombing and inflammation in my lungs. A PFT showed only 32% 02 diffusion and low lung volume. I was scheduled for an open lung biopsy. While I was in the hospital for the open lung biopsy, my pulmonologist, my cardiologist, and the surgeon were preparing my husband for my death! At the time, death would have been a welcome relief! (The open lung biopsy revealed severe scarring and considerable inflammation.) However..... I did not die. Instead, I began fighting back even though I was on 02 (6LPM) 24/7 and slept 16 hours a day + naps! Since my lungs had minimal elasticity (were like tissue paper instead of jello), I had to do breathing exercises several times a day for about a year (to reteach my lungs how to expand and contract). I learned yoga....esp "pranayama" for seated deep breathing and tai chi for breathing with movement. In the beginning, I coud not breathe and move, breathe and eat....you get the picture. It was because I began to improve...albeit gradually...that we realized we had correctly determined the source of the problem. (The offending product had been removed while I was in the hospital. I had to spend a week in an 'extended stay' hotel after leaving the hospital to insure I would not re-enter a 'contaminated' environment.) After the next PFT (6/03) which showed a 3% increase in 02 diffusion, I was put in rehab. Although rehab wanted me to use a treadmill, it was counterproductive. So was walking any distance. However, I did learn from my pulmonologist that rehab experts are the ones who determine LPM of 02 through this intensive exercise program. The hospital put me on 6 LPM (24/7) but the rehab people adjusted this down to 5 LPM (24/7 continuous flow). Once I understood the purpose of exercise, I got my own pulseoxymeter so I could monitor myself. I started doing gentle yoga stretches (and I am a rank amateur with flexibility issues), tai chi forms (which took me months to learn from videos). These paid off. In 12/03, my 02 diffusion was 42%! (I refused all steroids.) During this same period, I attempted weight training but had many setbacks.

After about 18 mos (6/2004), I was down to 4 LPM and could be 'active' for 3 hours per day.....slow walking with rests. I needed only 12 hours sleep + naps instead of 16. My husband no longer needed to eat TV dinners regularly and I could keep up with the laundry! I accomplished all this with 2 dogs, 2 cats, and several birds! The 2nd PFT (5/2003) showed improvement of 3% in diffusion but no change in lung volume. The 3rd PFT (12/2003) showed a 7% improvement in diffusion but no change in lung volume. The 4th PFT (6/2004) showed no change in either diffusion or volume. At this point, I was at 42% diffusion. I was told to expect no further changes. At this point, another factor came into play. DIET I have a PhD in holistic nutrition and am a degreed herbal nutritionist. During this first year (5/2003-6/2004), I was focusing my diet on cleansing my body of the formaldehyde (in case any remained in my body). However, my ability to weight train was met with many frustrations. I now realize this was because I was not consuming enough animal protein!

About this time (6/2004), I met a man on the internet who recommended I read WE WANT TO LIVE by Aajonus Vonderplanitz. It was about eating RAW GRASS-FED EEF, RAW MILK and RAW BUTTER from GRASS-FED COWS and RAW EGGS from free-ranging hens to HEAL AND REBUILD the body after any major tauma.

At first, I recoiled at the thought of eating raw animal flesh but finally felt I had nothing to lose (after talking to others who had done this with good results for other diseases). First I had to find a source of these foods. Then I began small....2 oz a day for about a week to build up my intestinal flora. Then, for 3 mos, I ate about 8 oz of raw beef a day and either drank 8 oz of raw milk or ate 2 tbsp of raw butter. (The milk had to be whole milk for its fat content.) Results..... The 5th PFT (12/2004) showed another 5% increase in diffusion and a whopping 20% increase in lung volume! This put my 02 diffusion at 47%. Also, I was able to reduce my supplemental 02 from 4LPM to 3LPM.The respiratory therapist (who had been doing all my tests) wanted to know what I was doing as she had never seen such a dramatic increase after a plateau. My pulmonologist wanted the name of the book! My 6th PFT (June of 2005) showed another 5% increase in diffusion but no further increase in lung volume. This put my diffusion at 52%. Knowing I was now out of the 'critical' stage, at the recommendation of my pulmonologist, my husband closed his business so we could relocate to an elevation of less than 1000' where, hopefully, I would not need supplemental 02 during the day. We moved from SLC (elevation of 4800') to San Marcos, Tx (elevation 600'). (For every drop of 1000' in elevation, supplemental 02 can be reduced by 1 LPM.) I still need it at night. On Friday, I will have my next PFT. To what do I attribute this gradual increase in diffusion (and the dramatic increase in lung volume the one 6 mos period)? I spent many hours of research after that one time of dramatic increase (from consuming raw grass-fed beef and raw dairy from grass fed cows and raw eggs from free-ranging hens). I learned that the flesh of grass-fed animals is very high in CLA (a fatty acid that promotes healing and, supposedly, the breakdown of scar tissue). Also, it seems that the fat that marbles lean grass-fed animals and their products are also very high in other healing agents including palmetic acid. (Grain-fed animals have very low levels of CLA and palmetic acid as these come from wild grasses.) Finally, the animal protein was needed to rebuild damaged tissue. Although I no longer eat the raw eggs or drink raw milk (too hard to get), I still eat wild tuna, pastured beef, and free-ranging chicken after only lightly searing them. They are still basically raw so that I get the benefit of the CLA. When in a restaurant, I order beef VERY rare. Although there may not be much CLA in this meat, what is there is better than nothing. One other factor may or may not be involved. As I continued my research (after the 4th PFT), I learned that the lungs rely very heavily on palmitic acid for optimal functioning. The raw fat of grass fed aminals is very high in palmitic acid. However, VIRGIN PALM FLOWER OIL is even higher in palmetic acid. This oil also has all the precursors for Vitamin A and Vitamin E! Vitamin E is a potent healer. It has also been known to soften scar tissue. Most Vit E capsules have only 2-3 forms of Vit E. Virgin Palm Oil has ALL the precursors for all the facets of vit E. I get my Virgin Palm Flower Oil from an internet company called Tropical Traditions (www.tropicaltraditions.com) Virgin Palm Flower Oil is a bright red-orange color and has no flavor. I use about a tsp on baked potatoes or toast or any other place I might otherwise have used butter...including popcorn. I don't worry about the calories or the fact that is is a saturated fat. Raw (unrefined) palm oil is actually healthy! What about exercise? Until I came to San Marcos, my exercise was primarily yoga and tai chi. I tried weights but with only limited results and many setbacks. This was because I did not know how to proceed properly (with PF) and did not understand the importance of consuming animal protein BEFORE and AFTER a weight-training sesson. Currently, I do weight-training for about 30 minutes every other day (or 15 minutes daily). I do a low impact gentle aerobics (using videos) about 2 times a week. More than that causes me to have a set back. I still do tai chi and yoga but in conjuction with the other exercises (tai chi after weight-training and yoga after aerobics). I have now added QiGong to my program as I have finally found a grand master in qigong (the healing form of tai chi) who is teaching me the tai chi forms that increase oxygenation of the body with complete removal of C02. All this (diet and exercise) was a gradual process with many setbacks. It included creating a new vocabulary for exercise (for myself so that I could have a way of describing what I was experiencing). It paid off not only for myself but for a dear friend whose asthma became life-threatening when when she was exposed to toxic black mold for several years. She is finally improving after about 2 years of being non-functioning. She can finally lift 2,3, 5# hand weights (took about 3 months) and can do a 30 minute gentle aerobics program. BTW, this woman weighs 350#s! Her resting heart rate has dropped from about 90 (6 mos ago) to 60. She can control her breathing (during aerobic exercise) until her heart rate is about 120. (She exercises only as long as she can control abdominal breathing.) Prior to that, she could not exercise at all because she would be unable to breathe as soon as her heart rate reached 100....remember, she was starting the exercise at 90 bpm!. If anyone can benefit from this information, I will be glad I shared it. mary

marymassung

Bring words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail.

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice.

[Guest guest]

Fred - welcome to our group. I read your email a couple of times because I wasn't familiar with some of the things you said.....even tho you were exposed to some things, it's probably going to be difficult to prove that it's the cause of your illness now. And you will probably need a pulmonary doctor who specializes in those chemicals. You need to find out which PF you have. We know it's hard to talk to family about things....we are always here.

--Diane Quinlan dianequinlan@...

[Guest guest]

Hi Fred,

Welcome to this list; you will find lots of

information and support here. Many of the list

members have years of experience.

I am a caregiver to my wife who has IPF. I am

also a retired AF guy and a disabled vet. I

participated in the last atmospheric testing of

nuclear weapons in 1962 in the Pacific and was

exposed to severe light radiation, which

eventually, caused blindness. I say this to

encourage you to keep on trying for VA

compensation. When you get more tests completed,

keep on working to get compensation. The DAV will

help you. As an example, VA now compensates for

Agent Orange victims. It took me years to get VA

to recognize that my blindness was the result of

light radiation. VA is slow to render

compensation, especially in a case such as yours,

where there are so many unknowns.

Regards,

Bob in Utah

[Guest guest]

Gray, If I'm not mistaken this left our group. She thought we were negative, I guess because we discuss our monster and how we deal with it.. I'll have to go to the site and look her up. NAH ! don't think I will. Have a blessed day.. Peggy

on 4/26/06 9:44 PM, jose singletary at jsingletary@... wrote:

mary, Are you still there? You could help this group if you wanted to. Your knowledge would be of great value to us. I was looking back to older posts and your's caught my attention. Please respond. Grey PS I guess i've been in shock and could not see clearly.

new member intro

I would like to introduce myself and share my story. Hopefully, something in it might help another person.

My name is . I am 59 years young. I was diagnosed with PF after an open lung biopsy 3 years ago. It was caused, it seems, by exposure to low levels of formaldehyde over about year (new product in our home). This product was tested and found to be off gassing formaldehyde. My blood antigens to formaldehyde were 350% above normal safe limits. All the damage occurred in a 12 mo period! For the sake of those with IPF, you might want to know that 'chemical pneumanitis' is always preceded by an 'eczema-like' skin rash! This fact was published in a United Nations report in 1999 after some scientific group commissioned by the WHO spent 25 years researching pulmonary diseases caused by low-molecular weight water-soluble chemicals.

Before I share the rest of the info, I want everyone reading this to understand that my situation may be different than the norm in that my exposure to the offending substance (formaldehyde) had a definite beginning and a definite end. If it had been ongoing for several years or if the source had not been found and removed, my situation might have had a very different outcome. Also, I was in very good health before the exposure. Because I got soooooo sick soooo rapidly and my husband rightly guessed (and removed) the source....the long term prognosis was in my favor (although not even the MDs gave me much hope in the early months after the open lung biopsy) I understand that others may not benefit from this information. I am sharing it in the hopes that even one might benefit.

My exposure to formaldehyde began in 3/2002. I started experiencing shortness of breath in 8/2002. I started experiencing flu-like symptoms which came and went(and extreme dizziness...to the point of falling without warning) in 12/2002. I first saw the MD in mid January. At that time, my 02 sat was 97 and my lungs sounded fine. However, the MD could not identify the rash which was spreading over my entire body! When I went back to the MD in Feb, my 02 sat was 92. My lungs still sounded clear and an EKG was normal. However, the skin rash was worse. Because the women in my family are prone to heart disease, the MD decided to have a stress test done. No one rushed it. Three weeks later, during the ultrasound, the cardiologist cancelled the test because my 02 sat was 82 and I gave evidence of pulmonary hypertension. Two days later (3/5)03), an angiogram was done.

The angiogram revealed my heart was strong and my arteries were 'sqeeky clean'. However, I had pulmonary hypertension and an 02 sat in the 70's. I was told to see a pulmonologist and, luckily, was referred to the best in the state! The CT showed extensive honeycombing and inflammation in my lungs. A PFT showed only 32% 02 diffusion and low lung volume. I was scheduled for an open lung biopsy. While I was in the hospital for the open lung biopsy, my pulmonologist, my cardiologist, and the surgeon were preparing my husband for my death! At the time, death would have been a welcome relief! (The open lung biopsy revealed severe scarring and considerable inflammation.) However.....

I did not die. Instead, I began fighting back even though I was on 02 (6LPM) 24/7 and slept 16 hours a day + naps! Since my lungs had minimal elasticity (were like tissue paper instead of jello), I had to do breathing exercises several times a day for about a year (to reteach my lungs how to expand and contract). I learned yoga....esp " pranayama " for seated deep breathing and tai chi for breathing with movement. In the beginning, I coud not breathe and move, breathe and eat....you get the picture. It was because I began to improve...albeit gradually...that we realized we had correctly determined the source of the problem. (The offending product had been removed while I was in the hospital. I had to spend a week in an 'extended stay' hotel after leaving the hospital to insure I would not re-enter a 'contaminated' environment.)

After the next PFT (6/03) which showed a 3% increase in 02 diffusion, I was put in rehab. Although rehab wanted me to use a treadmill, it was counterproductive. So was walking any distance. However, I did learn from my pulmonologist that rehab experts are the ones who determine LPM of 02 through this intensive exercise program. The hospital put me on 6 LPM (24/7) but the rehab people adjusted this down to 5 LPM (24/7 continuous flow). Once I understood the purpose of exercise, I got my own pulseoxymeter so I could monitor myself. I started doing gentle yoga stretches (and I am a rank amateur with flexibility issues), tai chi forms (which took me months to learn from videos). These paid off. In 12/03, my 02 diffusion was 42%! (I refused all steroids.) During this same period, I attempted weight training but had many setbacks.

After about 18 mos (6/2004), I was down to 4 LPM and could be 'active' for 3 hours per day.....slow walking with rests. I needed only 12 hours sleep + naps instead of 16. My husband no longer needed to eat TV dinners regularly and I could keep up with the laundry! I accomplished all this with 2 dogs, 2 cats, and several birds!

The 2nd PFT (5/2003) showed improvement of 3% in diffusion but no change in lung volume. The 3rd PFT (12/2003) showed a 7% improvement in diffusion but no change in lung volume. The 4th PFT (6/2004) showed no change in either diffusion or volume. At this point, I was at 42% diffusion. I was told to expect no further changes. At this point, another factor came into play. DIET

I have a PhD in holistic nutrition and am a degreed herbal nutritionist. During this first year (5/2003-6/2004), I was focusing my diet on cleansing my body of the formaldehyde (in case any remained in my body). However, my ability to weight train was met with many frustrations. I now realize this was because I was not consuming enough animal protein!

About this time (6/2004), I met a man on the internet who recommended I read WE WANT TO LIVE by Aajonus Vonderplanitz. It was about eating RAW GRASS-FED EEF, RAW MILK and RAW BUTTER from GRASS-FED COWS and RAW EGGS from free-ranging hens to HEAL AND REBUILD the body after any major tauma.

At first, I recoiled at the thought of eating raw animal flesh but finally felt I had nothing to lose (after talking to others who had done this with good results for other diseases). First I had to find a source of these foods. Then I began small....2 oz a day for about a week to build up my intestinal flora. Then, for 3 mos, I ate about 8 oz of raw beef a day and either drank 8 oz of raw milk or ate 2 tbsp of raw butter. (The milk had to be whole milk for its fat content.) Results.....

The 5th PFT (12/2004) showed another 5% increase in diffusion and a whopping 20% increase in lung volume! This put my 02 diffusion at 47%. Also, I was able to reduce my supplemental 02 from 4LPM to 3LPM.The respiratory therapist (who had been doing all my tests) wanted to know what I was doing as she had never seen such a dramatic increase after a plateau. My pulmonologist wanted the name of the book! My 6th PFT (June of 2005) showed another 5% increase in diffusion but no further increase in lung volume. This put my diffusion at 52%.

Knowing I was now out of the 'critical' stage, at the recommendation of my pulmonologist, my husband closed his business so we could relocate to an elevation of less than 1000' where, hopefully, I would not need supplemental 02 during the day. We moved from SLC (elevation of 4800') to San Marcos, Tx (elevation 600'). (For every drop of 1000' in elevation, supplemental 02 can be reduced by 1 LPM.) I still need it at night.

On Friday, I will have my next PFT.

To what do I attribute this gradual increase in diffusion (and the dramatic increase in lung volume the one 6 mos period)? I spent many hours of research after that one time of dramatic increase (from consuming raw grass-fed beef and raw dairy from grass fed cows and raw eggs from free-ranging hens). I learned that the flesh of grass-fed animals is very high in CLA (a fatty acid that promotes healing and, supposedly, the breakdown of scar tissue). Also, it seems that the fat that marbles lean grass-fed animals and their products are also very high in other healing agents including palmetic acid. (Grain-fed animals have very low levels of CLA and palmetic acid as these come from wild grasses.) Finally, the animal protein was needed to rebuild damaged tissue. Although I no longer eat the raw eggs or drink raw milk (too hard to get), I still eat wild tuna, pastured beef, and free-ranging chicken after only lightly searing them. They are still basically raw so that I get the benefit of the CLA. When in a restaurant, I order beef VERY rare. Although there may not be much CLA in this meat, what is there is better than nothing.

One other factor may or may not be involved. As I continued my research (after the 4th PFT), I learned that the lungs rely very heavily on palmitic acid for optimal functioning. The raw fat of grass fed aminals is very high in palmitic acid. However, VIRGIN PALM FLOWER OIL is even higher in palmetic acid. This oil also has all the precursors for Vitamin A and Vitamin E! Vitamin E is a potent healer. It has also been known to soften scar tissue. Most Vit E capsules have only 2-3 forms of Vit E. Virgin Palm Oil has ALL the precursors for all the facets of vit E. I get my Virgin Palm Flower Oil from an internet company called Tropical Traditions

(www.tropicaltraditions.com)

Virgin Palm Flower Oil is a bright red-orange color and has no flavor. I use about a tsp on baked potatoes or toast or any other place I might otherwise have used butter...including popcorn. I don't worry about the calories or the fact that is is a saturated fat. Raw (unrefined) palm oil is actually healthy!

What about exercise?

Until I came to San Marcos, my exercise was primarily yoga and tai chi. I tried weights but with only limited results and many setbacks. This was because I did not know how to proceed properly (with PF) and did not understand the importance of consuming animal protein BEFORE and AFTER a weight-training sesson.

Currently, I do weight-training for about 30 minutes every other day (or 15 minutes daily). I do a low impact gentle aerobics (using videos) about 2 times a week. More than that causes me to have a set back. I still do tai chi and yoga but in conjuction with the other exercises (tai chi after weight-training and yoga after aerobics). I have now added QiGong to my program as I have finally found a grand master in qigong (the healing form of tai chi) who is teaching me the tai chi forms that increase oxygenation of the body with complete removal of C02.

All this (diet and exercise) was a gradual process with many setbacks. It included creating a new vocabulary for exercise (for myself so that I could have a way of describing what I was experiencing). It paid off not only for myself but for a dear friend whose asthma became life-threatening when when she was exposed to toxic black mold for several years. She is finally improving after about 2 years of being non-functioning. She can finally lift 2,3, 5# hand weights (took about 3 months) and can do a 30 minute gentle aerobics program. BTW, this woman weighs 350#s! Her resting heart rate has dropped from about 90 (6 mos ago) to 60. She can control her breathing (during aerobic exercise) until her heart rate is about 120. (She exercises only as long as she can control abdominal breathing.) Prior to that, she could not exercise at all because she would be unable to breathe as soon as her heart rate reached 100....remember, she was starting the exercise at 90 bpm!.

If anyone can benefit from this information, I will be glad I shared it.

mary

marymassung

Bring words and photos together (easily) with

PhotoMail <http://us.rd.yahoo.com/mail_us/taglines/PMHM3/*http://photomail.mail.yahoo.com> - it's free and works with Yahoo! Mail.

[Guest guest]

Peggy,

Just lost in cyberspace somewhere??? Who knows, I do lose my train of thought sometimes, ha! Joyce > >> > My name is Fred. I am new to this group and, am quite worried about> > reading all of this info (at least its better to KNOW than wear the> > Son Tay patch as permanent award ... a mushroom with a pair of eyes> > looking out from under it on a black background with the caption "I> > must be a mushroom because I'm kept in the dark and fed BS!").> > As you can tell, I am trying to keep a sense ofhumor. Recently, I was> > diagnosed as having fibrosis by a pulmonary specialist here in WV.> > I'll get a new xray in a week or two and, next month, more info. I am> > wondering about some other causes ... like the formaldehyde ... and> > would like ANYONE to comeback and let me know sources for the> > poss > >

[Guest guest]

I dont share all of my fears about this desease with my family don't want them to worry more if I can help. but reading the words from so many of you speaking my feelings has eased some of those fears of the unknown and not feeling alone with this has lighten the burden so muchismas gracias,to all doris

HERE HERE!...well said.

kiss kiss,

~Ginger~

[Guest guest]

I know this is late , but mary has started her own web on excersize I believe it is in march or feb letters she has so much info , but the key thing is your an individual that will have to see whatworks best for you .while I am writing I just want to say thankyou to everyone I have been sitting here at the cafe for about three hours down to 340 e-mails from 560 I have learned, laughed,cried.Itruly dont feel so alone because we are unfortunatly all here .I have spent alot of my life in the woods shareing my secrets with the trees I dont share all of my fears about this desease with my family don't want them to worry more if I can help. but reading the words from so many of you speaking my feelings has eased some of those fears of the unknown and not feeling alone with this has lighten the burden so muchismas gracias,to all doris Barbara Soice wrote: Hey, Grey, what is going on? What are you in shock about? Barb in KYjose singletary wrote: mary, Are you still there? You could help this group if you wanted to. Your knowledge would be of great value to us. I was looking back to older posts and your's caught my attention. Please respond. Grey PS I guess i've been in shock and could not see clearly. new member intro I would like to introduce myself and share my story. Hopefully, something in it might help another person. My name is . I am 59 years young. I was diagnosed with PF after an open lung biopsy 3 years ago. It was caused, it seems, by exposure to low levels of formaldehyde over about year (new product in our home). This

product was tested and found to be off gassing formaldehyde. My blood antigens to formaldehyde were 350% above normal safe limits. All the damage occurred in a 12 mo period! For the sake of those with IPF, you might want to know that 'chemical pneumanitis' is always preceded by an 'eczema-like' skin rash! This fact was published in a United Nations report in 1999 after some scientific group commissioned by the WHO spent 25 years researching pulmonary diseases caused by low-molecular weight water-soluble chemicals. Before I share the rest of the info, I want everyone reading this to understand that my situation may be different than the norm in that my exposure to the offending substance (formaldehyde) had a definite beginning and a definite end. If it had been ongoing for several years or if the source had not been found and removed, my situation might have had a very

different outcome. Also, I was in very good health before the exposure. Because I got soooooo sick soooo rapidly and my husband rightly guessed (and removed) the source....the long term prognosis was in my favor (although not even the MDs gave me much hope in the early months after the open lung biopsy) I understand that others may not benefit from this information. I am sharing it in the hopes that even one might benefit. My exposure to formaldehyde began in 3/2002. I started experiencing shortness of breath in 8/2002. I started experiencing flu-like symptoms which came and went(and extreme dizziness...to the point of falling without warning) in 12/2002. I first saw the MD in mid January. At that time, my 02 sat was 97 and my lungs sounded fine. However, the MD could not identify the rash which was spreading over my entire body! When

I went back to the MD in Feb, my 02 sat was 92. My lungs still sounded clear and an EKG was normal. However, the skin rash was worse. Because the women in my family are prone to heart disease, the MD decided to have a stress test done. No one rushed it. Three weeks later, during the ultrasound, the cardiologist cancelled the test because my 02 sat was 82 and I gave evidence of pulmonary hypertension. Two days later (3/5)03), an angiogram was done. The angiogram revealed my heart was strong and my arteries were 'sqeeky clean'. However, I had pulmonary hypertension and an 02 sat in the 70's. I was told to see a pulmonologist and, luckily, was referred to the best in the state! The CT showed extensive honeycombing and inflammation in my lungs. A PFT showed only 32% 02 diffusion and low

lung volume. I was scheduled for an open lung biopsy. While I was in the hospital for the open lung biopsy, my pulmonologist, my cardiologist, and the surgeon were preparing my husband for my death! At the time, death would have been a welcome relief! (The open lung biopsy revealed severe scarring and considerable inflammation.) However..... I did not die. Instead, I began fighting back even though I was on 02 (6LPM) 24/7 and slept 16 hours a day + naps! Since my lungs had minimal elasticity (were like tissue paper instead of jello), I had to do breathing exercises several times a day for about a year (to reteach my lungs how to expand and contract). I learned yoga....esp "pranayama" for seated deep breathing and tai chi for breathing with movement. In the beginning, I coud not breathe and move, breathe and eat....you get the picture. It was because I began to improve...albeit gradually...that we

realized we had correctly determined the source of the problem. (The offending product had been removed while I was in the hospital. I had to spend a week in an 'extended stay' hotel after leaving the hospital to insure I would not re-enter a 'contaminated' environment.) After the next PFT (6/03) which showed a 3% increase in 02 diffusion, I was put in rehab. Although rehab wanted me to use a treadmill, it was counterproductive. So was walking any distance. However, I did learn from my pulmonologist that rehab experts are the ones who determine LPM of 02 through this intensive exercise program. The hospital put me on 6 LPM (24/7) but the rehab people adjusted this down to 5 LPM (24/7 continuous flow). Once I understood the purpose of exercise, I got my own pulseoxymeter so I could monitor myself. I started doing gentle yoga stretches (and I am a

rank amateur with flexibility issues), tai chi forms (which took me months to learn from videos). These paid off. In 12/03, my 02 diffusion was 42%! (I refused all steroids.) During this same period, I attempted weight training but had many setbacks. After about 18 mos (6/2004), I was down to 4 LPM and could be 'active' for 3 hours per day.....slow walking with rests. I needed only 12 hours sleep + naps instead of 16. My husband no longer needed to eat TV dinners regularly and I could keep up with the laundry! I accomplished all this with 2 dogs, 2 cats, and several birds! The 2nd PFT (5/2003) showed improvement of 3% in diffusion but no change in lung volume. The 3rd PFT (12/2003) showed a 7% improvement in diffusion but no change in lung volume. The 4th PFT (6/2004) showed no change

in either diffusion or volume. At this point, I was at 42% diffusion. I was told to expect no further changes. At this point, another factor came into play. DIET I have a PhD in holistic nutrition and am a degreed herbal nutritionist. During this first year (5/2003-6/2004), I was focusing my diet on cleansing my body of the formaldehyde (in case any remained in my body). However, my ability to weight train was met with many frustrations. I now realize this was because I was not consuming enough animal protein! About this time (6/2004), I met a man on the internet who recommended I read WE WANT TO LIVE by Aajonus Vonderplanitz. It was about eating RAW GRASS-FED EEF, RAW MILK and RAW BUTTER from GRASS-FED COWS and RAW EGGS from free-ranging hens to HEAL AND REBUILD the body after any major

tauma. At first, I recoiled at the thought of eating raw animal flesh but finally felt I had nothing to lose (after talking to others who had done this with good results for other diseases). First I had to find a source of these foods. Then I began small....2 oz a day for about a week to build up my intestinal flora. Then, for 3 mos, I ate about 8 oz of raw beef a day and either drank 8 oz of raw milk or ate 2 tbsp of raw butter. (The milk had to be whole milk for its fat content.) Results..... The 5th PFT (12/2004) showed another 5% increase in diffusion and a whopping 20% increase in lung volume! This put my 02 diffusion at 47%. Also, I was able to reduce my supplemental 02 from 4LPM to 3LPM.The respiratory therapist (who had been doing all my tests) wanted to know what I was doing as she

had never seen such a dramatic increase after a plateau. My pulmonologist wanted the name of the book! My 6th PFT (June of 2005) showed another 5% increase in diffusion but no further increase in lung volume. This put my diffusion at 52%. Knowing I was now out of the 'critical' stage, at the recommendation of my pulmonologist, my husband closed his business so we could relocate to an elevation of less than 1000' where, hopefully, I would not need supplemental 02 during the day. We moved from SLC (elevation of 4800') to San Marcos, Tx (elevation 600'). (For every drop of 1000' in elevation, supplemental 02 can be reduced by 1 LPM.) I still need it at night. On Friday, I will have my next PFT. To what do I attribute this gradual increase in diffusion (and the dramatic increase in lung volume the one 6 mos period)? I spent many hours

of research after that one time of dramatic increase (from consuming raw grass-fed beef and raw dairy from grass fed cows and raw eggs from free-ranging hens). I learned that the flesh of grass-fed animals is very high in CLA (a fatty acid that promotes healing and, supposedly, the breakdown of scar tissue). Also, it seems that the fat that marbles lean grass-fed animals and their products are also very high in other healing agents including palmetic acid. (Grain-fed animals have very low levels of CLA and palmetic acid as these come from wild grasses.) Finally, the animal protein was needed to rebuild damaged tissue. Although I no longer eat the raw eggs or drink raw milk (too hard to get), I still eat wild tuna, pastured beef, and free-ranging chicken after only lightly searing them. They are still basically raw so that I get the benefit of the CLA. When in a restaurant, I order beef VERY rare. Although there may

not be much CLA in this meat, what is there is better than nothing. One other factor may or may not be involved. As I continued my research (after the 4th PFT), I learned that the lungs rely very heavily on palmitic acid for optimal functioning. The raw fat of grass fed aminals is very high in palmitic acid. However, VIRGIN PALM FLOWER OIL is even higher in palmetic acid. This oil also has all the precursors for Vitamin A and Vitamin E! Vitamin E is a potent healer. It has also been known to soften scar tissue. Most Vit E capsules have only 2-3 forms of Vit E. Virgin Palm Oil has ALL the precursors for all the facets of vit E. I get my Virgin Palm Flower Oil from an internet company called Tropical Traditions (www.tropicaltraditions.com) Virgin Palm Flower Oil is a bright red-orange color and has no flavor.

I use about a tsp on baked potatoes or toast or any other place I might otherwise have used butter...including popcorn. I don't worry about the calories or the fact that is is a saturated fat. Raw (unrefined) palm oil is actually healthy! What about exercise? Until I came to San Marcos, my exercise was primarily yoga and tai chi. I tried weights but with only limited results and many setbacks. This was because I did not know how to proceed properly (with PF) and did not understand the importance of consuming animal protein BEFORE and AFTER a weight-training sesson. Currently, I do weight-training for about 30 minutes every other day (or 15 minutes daily). I do a low impact gentle aerobics (using videos) about 2 times a week. More than that causes me to have a set back. I still do tai chi and yoga but in conjuction with the other exercises (tai chi

after weight-training and yoga after aerobics). I have now added QiGong to my program as I have finally found a grand master in qigong (the healing form of tai chi) who is teaching me the tai chi forms that increase oxygenation of the body with complete removal of C02. All this (diet and exercise) was a gradual process with many setbacks. It included creating a new vocabulary for exercise (for myself so that I could have a way of describing what I was experiencing). It paid off not only for myself but for a dear friend whose asthma became life-threatening when when she was exposed to toxic black mold for several years. She is finally improving after about 2 years of being non-functioning. She can finally lift 2,3, 5# hand weights (took about 3 months) and can do a 30 minute gentle aerobics program. BTW, this woman weighs 350#s! Her resting heart rate has dropped from about 90 (6 mos ago) to 60.

She can control her breathing (during aerobic exercise) until her heart rate is about 120. (She exercises only as long as she can control abdominal breathing.) Prior to that, she could not exercise at all because she would be unable to breathe as soon as her heart rate reached 100....remember, she was starting the exercise at 90 bpm!. If anyone can benefit from this information, I will be glad I shared it. mary marymassung Bring words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail. Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice.

Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates.