My Proactive Battle with ILD (Interstitial Lung Disease)

My Proactive Battle with ILD (Interstitial Lung Disease)

I am newly diagnosed with NSIP and/or DIP. I am starting a blog to tell people how I have been fairly successfully fighting these ILD diseases. I have had Polymyalgia Rheumatica for about 7 years, which is a connective tissue disease and may be related to the NSIP. i am not a smoker, but have been around a lot of art solvents, environmental toxins, hazards that may have contributed to the development of ILD which began for me in Oct./Nov. 2012 with walking pneumonia like symptoms followed by dyspnea or shortness of breath in December 2012. In March, after a preliminary diagnosis of ILD, I just happened to find out about The 5:2 Fast Diet on PBS by British physician, Michael Mosley. The diet is so easy to follow (and its not really a total fast, just a reduction in calories 2 days a week) and makes so much sense! I highly recommend it! It has helped me lose 20 pounds in 2 months! But the best thing about it, is that it is based on cutting edge research that shows that such a diet can lengthen your life! In addition, Michael Mosley has another program on PBS based on cutting edge research on Exercise which simply involves adding three 20 second spurts of all out exertion on a stationary bicycle or treadmill to your routine and it helps to change your metabolism, so that you burn more fat and lose weight! Both the diet and the exercise I have been able to do have certainly done something to change my metabolism, because over the last 2 months, I have lost 20 lbs. and have had almost all my symptoms of shortness of breath go away! I feel better than I have in 15 or twenty years!!! I want to share this with people who may also benefit from what I have been able to do, so I am starting a blog. The blog can be found at MyProactiveBattlewithILD.blogspot.com . Please come and check it out. I am new to this blogging stuff, so be patient, but I really want to let people know how I think we can beat this awful prognosis that we are faced with, and actually feel better and get well! He

re's hoping anyway. I go see an ILD specialist at Duke Medical Center in abut a week, so I'll be able to report on that upcoming visit soon on my blog, as well. Hang in there everyone! Peace! --Artyness

45 Replies

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  • Advising folk with COPD to diet can be very dangerous to some, maybe most. No doubt being SOB leads to a fairly inactive life style and I for one would be better if I lost a few pounds...who am I kidding...a few stone. However, these wonder diets fail to take one thing into consideration. COPD uses up a large amount of calories just to keep air movig into and out of the body. The figure normally used is a least 4 times the calories of a normal person are required to maintain body weight. After a spell in hospital, I was advised to increase my calorie count to 8 times the normal for at least 10 weeks and to ensure that I only ad full fat dairy products etc. As regards fitness and weight loss, most folk she seek guidance from their Pulmanary care team or doctor.

  • I am not advising anyone with COPD to do this. Keep in mind I have been diagnosed with NSIP and/or DIP — not COPD. Of course, everyone should check with their pulmonologist and primary care doctors to get approval before doing this. I am only stating what has worked for me and it is amazing! And you will probably be hearing more about this diet, as it based on cutting edge research from around the world. I am just really surprised at how it has changed my metabolism so much that I can lose weight even while taking 60 mg of prednisone a day! (On this diet you don't really fast completely, just reduce your calories to 600 or so two days a week.) I'm just saying it is working for me. Definitely, always check with your doctor, first. I did.

    As for the 20-second bursts of exertion, I started out with only a 70% increase at first and have worked my way up to maybe 90% exertion on the 20-second spurts. It causes the metabolism to change and burn fat based on how we evolved with the fight or flight response. (Don''t know what you mean by SOB?)

  • This is a selling jobber, ain't it.

  • SOB = shortness of breath

  • Glad to know its not the other SOB!

  • Ha ha ;)

  • Hmmmm,no thankyou

  • I am not sure that a 20 second spurt of all out exertion would be safe for me, and maybe not for others. Perhaps people should follow the advice of their doctors rather than follow things like this.

  • SEE YOUR DOCTOR!! IF YOU WANT TO TRY THIS.

  • Is it me or do we seem to be getting a lot of drivel here lately :(

  • Too right, especially on nutritional matters ... highly suspect! Fed up reporting such blogs - moderators just ignore.... pointless, Jambo. Follow your own medical team's advice. Ignore the quacks!

    Sandra x x x

  • Oh dear, the moon must have been full this weekend. In the spirit of being a caring community, I am sure you are well intentioned, however, giving medical advice that you are not qualified to give is ill advised.

  • Newly diagnosed yet already a specialist handing out advice? Mmmm.

    It reads more like an advert for a US TV channel and certain diet.

    No point reporting, the admins here ignore reports. Let's just hope nobody follows the dangerous and somewhat odd and untrustworthy advice.

  • Whose claiming to be a specialist? Not me! I'm just trying to share my results with people because I feel so good!!!

    It's actually Dr. Michael Mosley, a British doctor on PBS (Public Broadcasting Corporation) a non-profit TV station in the US, and Mosley I think may have the program on BBC as well.

    So, I guess no one here wants to hear about something that may be helping someone out with NSIP or DIP? I decided to get out of my depression about this disease and take a proactive approach to doing something, especially after my Pulmonary doctor advised me that walking would be very good for me. I'm glad I decided to take a positive attitude and started taking charge of my life. If this is not a forum for sharing what is working for each of us, and what is not, what is it for?

  • Michael Mosley graduated in psychiatry, but never actually worked as a physician.... his career choice was that of media journalism ... hardly someone I would give exceptional credence to in respect of health matters. If like me, he only has to attend a small number of seminars to maintain his professional qualifications, I would take his pronouncements with a very large pinch of salt!

  • Profile map is no use to man or beast. Could be based in Outer Mongolia for all we know.

    As my old dad used to say "Hop off sunshine".

    Bobby, based in Oldbury, England.

  • Welcome artyness, thank you for the blog , the 5-2 diet , has been around for about a year or so now. I know 2 people with diabetis who's doctor suggested it to them. They are doing well , infact they hardly notice there on it its only the 2 days of 6-8 hundred calories but they seem pleased with it , anyway take care, hope your appointment at the dukes centre goes well in Stafford

  • It is Duke University in North Carolina. I live in North Carolina, US. Wow, some of your fellow Brits really know how to come down hard on someone just trying to share their good and positive experiences in battling NSIP and/or DIP. My apologies for not stating the obvious, that everyone should always check with their doctor first. I am just feeling better than I have in 20 years after losing this weight and exercising almost daily. It was hard for me at first, as I had pain when I breathed deeply, but I worked through it, pacing myself, and Pulmonary Rehab is often advised for many Interstitial Lung Diseases. I also do not hear the fibrosis (velcro sound) anymore at night when I am breathing, so I feel my pulmonary function may be getting better, as well.

  • I ment to put Sheffield

  • Hi artyness, actually the UK National Health Service posted a detailed article on the diet on its Web site citing limited evidence for weight loss in humans, and a lack of good evidence for increasing lifespan, improving cognitive decline, and prolonging life in humans in real life (as opposed to animal and laboratory results). The conclusion was: "compared to other types of weight loss programmes the evidence base of the safety and effectiveness of the 5:2 diet is limited. If you are considering it then you should first talk to your GP to see if it is suitable for you."

  • Something about these posts seems very mechanical and prewritten and although I know the USA does have a name in development of health care, this is only every surpassed by their ability to invent every scam and false representation know to man, monkey and people living in hope.Any one tell me how to block these posts or do I have to wait until Tuesday ?

  • Don't worry. I'm done with commenting on this post!

  • Hi Brian, it's not as if we don't already know about it, it's public knowledge which hasn't exactly set the world alight due to it's limited applicability.

  • Don't worry about them...the good news is there are hundreds more on this site who possibly would be interested in your blog as I was, I did think you ment Sheffield though , we have pr here and people feel the difference in there breathing it's a good thing, I think you.have a very positive mind and you're working hard at it Keep blogging artyness

  • Thanks, Jennyren but its not worth it!

    Good luck!

  • That's good of you Jennyren to speak on behalf of the members here with ILD, of which incidentally I could find only 6 or 7 people who had actually blogged about it. Perhaps I can speak on behalf of the remaining 2000 plus members who are short of breath at rest, never mind on exertion and who would be best advised to seek medical approval before undertaking a furious 20 second blast of cycling three times. Otherwise, we might have a rapid reduction in our member list. To those of you suffering from ILD absolutely no disrespect is intended of your condition.

  • What gives you lot the right to degrade a blogger, any blogger are you all psychic or something you seem to know all about it , you are despicable , you are like sheep 1 following the other , get back to your blogs and talk about chocolate like you usually do after all it seems that this is what the site is for negative , overweight , and overbearing clicky people we will dispense with decent blogs and keep just what u lot want shall we

  • That escalated rapidly Jennyren. This site is for people who are seeking good, medically back advice that they can follow safely. Your remarks are very insulting to the majority of the members here, you can insult me personally, feel free but hardly in keeping with your previous stated comments of people being offensive.

  • Nicely put and a bit more restrained than I would have been. Well done.scrobbitty.

  • Excuse me, but I'd like to thank Jennyren. It was actually the 80-90 percent of member responses to my post that was truly insulting and more than rude! I was really shocked! This is my last visit and post here, I promise you that. You can follow my blog or not at MyProactiveBattlewithILD@blogspot.com

    but I'll not be returning here. This group does not make people feel very welcome to share ideas or personal experiences, and rather than ask for more information, you seem to prefer to make erroneous assumptions and speculate about all kinds of crazy conspiracies. Sorry to have unwittingly stirred up such a hornet's nest with my post. I hope you all can find a more positive way to respond to new bloggers in the future!

    Peace, —Artyness

  • How rude Jennyren

    Read the piece from the Blf at the bottom of the page please,

    It says Do not be abusive or malicious Every one is entitled to their opinion, and I have to agree the 20 second exercise spurt and diet could be misleading and dangerous to a lot of lung sufferers

    I lost my lovely Dad last year to Emphysema if he would have, tried this I dread to think what would have happened bless him and no he was not overweight

    I think the main problem is we have been plaqued in the past with a lot of these health fads from America in particular ( and other sites have too) which generally turn out to be someone either selling something or just fads, had it last weekend to. She was from America too the diet she was touting actually caused Kidney failure for a lot of people. Always seem to come on here at weekends to . and write in the same way hmm

  • I got the 5:2 Fast Diet from Dr. Michael Mosley in Great Britain! I can hardly believe you people! I pulled for Andy Murray this morning at Wimbledon, what a great victory! Hope you folks enjoyed that at least!

  • The insults are for the usual crowd , that continue to hound any post that they don't like, it is not for you to decide, it is the blf...

  • It's not a question of not liking a post Jennyren, if a blog is written for the site, everyone has a right to make a comment with their individual opinion. Yet again, your comments have been directed personally.

  • I for one have reported your disgusting attack on a member Jennyren,I would like you to explain to me why you should fly of the handle like that,I don't know if you have seen the amount of so called American posts on here,all sited in eastern Europe I hasten to add.And you side with one that you know nothing about.maybe if you read nowheeze comments on this,who by my reckoning has gone through a lot of trouble to check this post out,on behalf of us members on here,you will then maybe see that this is going to be another one of 'those' posts.

    Shall we put your outburst down to maybe a little too much sun.!!!

  • You guys are really kind of wacky. I live in Black Mountain, North Carolina. and was just trying to share what has worked for me, at the advise of my doctors. Certainly everyone should consult their doctors before beginning a diet or exercise program. I thought everyone knew that!

  • I entirely agree Jenny (and have posted this to BC too)

    There are a section in this community who think that any advice/information equals them being told or sold something. (unless its from one of the 'group' of course when its (((( )))) and xxx all round)

    A well meaning new blogger sent packing...... Lets face it .... you would have to be brave and thick skinned to continue to express a personal opinion here.

    What is it that is not understood about the purpose of this site!

    I am embarrassed that a British site gives such a poor representation of us all.

    Sure, we are caring enough, but it seems only of those in our existing little gangs/friendship groups/frequent fliers.

    Why cant we welcome new people who think they have something to say, the only new people welcomed are the 'humble and grateful for our/your attention, anything informed or assertive is shot down)

    Shame on you .... you know who you are (if you are not sure then the test is .... does this blog really annoy you? .... if so, then yes .... I mean you)

    Izzy.

  • Oh dear please don't keep arguing everyone. Its giving me a headache :(

  • I have been doing the 5.2 diet. it is fantastic for me. Less fat, more energy, easier breathing.

    I live in England. Love to all fellow COPD sufferers making the effort.

  • This didn't happen to be going on at the weekend did it? Seems to be a familiar pattern to me but I am just saying and definitely not biting.

    Hope everyone is well and happy. Love to all and may the sun continue to shine. xxxxxxxxxxx

  • Your blog has certainly started a lot of discussion... I had an interstitional infection after pneumonia, and now I have asthma/COPD, but I am underweight

    As I understand you were just telling us how you were trying to overcome your health problems, and not advising anybody with COPD to follow your ideas.

    I am glad they worked for you and that you enjoyed the tennis yesterday

    Sending love as well ...but we haven't got any sun... grey cloud

  • Well said Knitter

    I don't see any reason why this 5-2 diet cannot be discussed in a respectful friendly manner, I am just sad that Jennyren has since left us. Same ol same ol people doing the provoking and bullying.

  • Artyness, I am really sorry you had to experience this and Jennyren.

    Please stay with us if you wish, I think it is appalling the way some people have behaved on your blog.

    Best wishes to you

    BC

  • I entirely agree Blakey

    There are a section in this community who think that any advice/information equals them being told or sold something. (unless its from one of the 'group' of course when its (((( )))) and xxx all round)

    A well meaning new blogger sent packing...... Lets face it .... you would have to be brave and thick skinned to continue to express a personal opinion here.

    What is it that is not understood about the purpose of this site!

    I am embarrassed that a British site gives such a poor representation of us all.

    Sure, we are caring enough, but it seems only of those in our existing little gangs/friendship groups/frequent fliers.

    Why cant we welcome new people who think they have something to say, the only new people welcomed are the 'humble and grateful for our/your attention, anything informed or assertive is shot down)

    Shame on you .... you know who you are (if you are not sure then the test is .... does this blog really annoy you? .... if so, then yes .... I mean you)

    Izzy.

  • Its a very sad situation Izzy.

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