My Story

Polymyositis

Pulmonary Fibrosis

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Gloria,

Hi Lenor,

Thank you for you site.

I am a 22 year old and I was diagnosed with Polymyositis a year ago. I'm so inspired by your story and it really helped me become familiar with this disease. I had to leave school and was hospitalized for 3 days right before Thanksgiving 2004 and started treatment. I was on 80 mg of Prednisone with a CPK starting at 18,000. I also had a muscle biopsy done to confirm the disease. The doctors didn't tell me much except that it was an autoimmune disorder that weakened my muscles. I thought I would immediately start getting better after I started treatment, but no, I had gotten weaker and weaker until I could only lie in bed. I also had problems with swallowing so eating was a big challenge. And under the effect of the steroids, I was even depressed and couldn't remember much of anything. The doctor prescribed some anti-depressants and I was able to recover from that.

Now, a year later my CPK is down to 207 and alternating between 25 mg and 20 mg of Prednisone a day. I am also on 175 mg of Cyclosporine everyday, 30 mg of Methotrexate injection every week, and 42g of IvIg every month. My CPK had really started to improve drastically after I got on Cyclosporine. I began noticing my improving strength after I started IVig. It seemed to have given me more energy. I began swimming in May and now I am able to run on the treadmill and do yoga. I also try to do 20 situps a day to improve my strength. Of course, I get tired very easily, but it sure does feel good to be able to get out of bed and do things I couldn't do a year ago again. I'm deciding to return to design school next September and hopefully my CPK will stabilize or even become normal again. I am really grateful that I've got a real good doctor who has helped me a great deal.

You are truly an inspiration and you look gorgeous and healthy. Right now, I'm just really bothered by the side effects of Prednisone. I've never felt so self conscious and ugly in my whole life. I was wondering if you could tell me how you lost all that weight and when do things start looking up? Will the side effects ever go away?

Anyway, I hope you stay strong and brave as will I. Take care. chiugloria@gmail.com

 Gloria

Saturday, December 31,, 2005

 

Jaime,

I'm a 29 year old mother of 2. I was diagnosed with Interstitial Lung Disease on October 13, 2005. Today it is December 19, 2005 and we still do not know which of the Interstitial Lung Diseases it is that has attacked my lungs. I am currently on Prednisone and Cytoxan. I have had to give up my job and become a stay at home mom. Not, that I really mind that, I just wish it had been a decision I could willingly make and not one I was forced to make.

Pulmonary Fibrosis was my original diagnosis but after the bronchoscopy and the lung biopsy, that has now been ruled out along with Lymphangiomyomatosis. I am told those are the worst of the evils known as Interstitial Lung Diseases. Atleast we know it is not those, however they still are not sure exactly which one it is. The Mayo Clinic in Arizona is currently reviewing my slides. I will have their results on the 28th. They have it narrowed down to 3 other Interstitial Lung Diseases and are doing the final elimination process now.

Now, I just sit in wait everyday and try to find things to keep me busy so that I do not think about it constantly. Your story has really touched my heart, life and soul. I wish you all the best and am here anytime you need someone to listen, a shoulder to cry on, or cyber throw things at.

Wishing you and yours a very Merry and safe Holiday.

Monday, December 19th, 2005

Cyndi,

Hello;    Thank you for your web site and candor.  I'm a 51 yr old female, married 31 yrs to the same wonderful man and we have 26 yr old twin daughters.  My husband became medically disabled 1988 with a diagnosis of vasculitis and our journey thru the medical maze of up and downs has been exhausting.  Our daughters became ill when they were 13 yrs old and were finally diagnosed with Lupus.  Needless to say I'm very familiar with all the medications used to treat autoimmune diseases and their side affects.  Then 5 yrs ago my mom went into renal failure and became officially blind due to poor medical care, her underlying diagnosis was diabetes.  She is now a hemodialysis pt and requires out pt dialysis three times a week.  I tell you this as my history has been one of caregiver, bread winner, friend, and optimist.  That is up till now.  I too have been recently diagnosed with an autoimmune disease, dermatomyositis.  I'm frightened, angry, and don't have the strength to fight.  Guess these are normal reactions...........and we will muddle thru, cuz what else can we do, huh.  Anyway, I stumbled across your web site...........felt right to write.        

Take care, Cyndi

Monday, December, 19th, 2005

Linda S. Teague

Thank you so very much for your wonderful website. I was diagnosed with
dermatomyosistis 4 years ago. I thought that I was just anemic from the stress of being a single working mom with 2 active teenagers after my husband passed away the year before. I began on prednisone and methotrexate after the muscle biopsy, countless blood tests and many visits to my rhematologist. My CPK level was over 3000, and after 4 years, it hovers at 150 or so. I have the moon face and can't seem to lose weight because of the steroids and experience muscle weakness and pain when I push myself. I travel a lot for my work, but am thankful that I still get around okay. Your website is so amazing with all your trips. I have trouble walking (somewhat due to a total knee replacement a year ago), but am so amazed that you get around so well---you are such an inspiration!! I have had a few flare ups and some changes in mymethotexate recently, because of white blood count problems. My doctor wants to put me on Imuran next month, and I do not know a lot about that drug. I wish that I could get off the steroids, because I have difficulty sleeping and am always tired. I do take a lot of vitamins and will try your list of  " do and don'ts" for eating. Thank you for yourwonderful journey and all the best to you and your husband.

LINDA S. TEAGUE
Linda.teague@elder-beerman.com

Monday, November 14th, 2005

Phil Bousley

Hello,

I have been feeling bad for several months.  Thought it was part of getting old.  I am 65.  Finally my pain was persistent and I noticed other changes in balance, difficulty getting out of chairs, swallowing, and climbing stairs. Finally went to my internist and he diagnosed it as polymyositis but sent me to a rheumatologist in Indianapolis .  He ordered a tissue biopsy.  No question now, it is polymyositis.  I am on prednisone 40 mg and will be reducing it down to 12.5mg during the next few months.  Certainly don't like what I have been reading and hearing on the internet.   I joined the Myositis support group and have learned a lot.  The people there are so understanding and willing to share.  So I am just beginning the trek and learning as I go.  Your stories and information are appreciated.

Saturday, November 5th, 2005

Roseann

Hi, Your website is great. I was diagnosed with PM in  2001. I've had a few stays in the hospital. I'm also in CT so I was in Stamford Hospital and also Colombia Presbyterian in Manhattan. By the time I was diagnosed correctly, I was so weak that they weren't sure if it was only PM....thank God it is. I have been struggling with CPK's also, mine are at 895 as of today. My Dr.'s have been playing around w/my meds lately because the steroids don't seem to be doing it anymore. I was on 60 mg. of Prednisone and 150 mg. of Imuran. We taper off the prednisone, I get down to 20 mg. and the CPK's start climbing and I feel horrible . So we tried Methotrexate, I was taking this by injection at the beginning in 2001, but was having terrible side affects, so now I take 20 mg. ( 8 tablets) once a week of Methotrexate. I've received IV/IG 3 times, but my rheumatologist isn't a big fan he thinks it's only a temp. fix, so we're searching for something longer lasting. About 3 weeks ago he decided to start me on Enbrel 50 mg. injections once a week. I honestly don't feel any difference yet, but I'm hoping for the best. The side affects of this are terrible too. I'm having bad headaches and feel like I'm getting a bad cold. I also see a pulmonary specialist, because for some reason my diaphragm has been damaged badly. My lungs only hold 1.37 liters of air instead of the 3 or so that they should hold. I sleep with bi-pap, and have also (don't laugh) started singing as a way to strengthen my diaphragm:) I definitely won't quit my day job...:) By the way I'm a realtor here in Stamford, I'm 38, married to a great man:) and I have 3 daughters....If you have any other ideas on how to work my diaphragm ...or about the disease in general please let me know. Also one other thing, I'm always so tired....I mean really tired do you feel this way too? Good luck to you on your journey, you're attitude is great, I'll keep you in my prayers

Friday, November 4th, 2005

 
 

Cheryl

I was diagnosed with Pulmonary Fibrosis in May. I was fortunate to go to the Winchester Chest Clinic at Yale. Dr. Morris scheduled an open lung biopsy, which confirmed my Fibrosis. I am currently injecting actimmune 3x a week. Dr. Morris told me about this site. I am so happy to have found it, I thought I was all alone. You are a very brave lady. Cheryl Banks   Cherylb429@aol.com

Monday, October 25, 2005

 

Shauna

I am 28 year old and have newly been diagnosed with PF.  They have said we are going to try many different plans as far as meds..what would you suggest for that and for my diet changes?  Your site completely has inspired me and you have been a true inspiration to me.

Friday, October 14, 2005

Rodney

Hello my name is Rodney and I had an aunt with Pulmonary Fibrosis.  She made good decisions as far as bad habits went, but she died on May the 3rd with this disease.  She has left a husband and a daughter to mourn her death.  During the sickness, she was just this year receiving 15 liters of oxygen a day or a week, and coughing all the time.  How were you able to fight off this disease, but my aunt didn't???  I would have wondered how you felt when you were diagnosed with the disease!!  Well on that Disney Trip to Florida is when Rosalyn discovered that there was a problem.  While walking up the stairs she had trouble catching her breath...  She was in total shock when she heard that she had this, but she was strong to the very end.  We all loved her so much, but we happen to have strong faith that we will see her again in the Paradise.  You see I am one of Jehovah's Witnesses and we believe that God Jehovah will make his original purpose come true for all the folks that have worshiped him.  That is what he wanted Adam and Eve to do, was to live forever on this earth!! Love, Rodney

Monday, October 10, 2005

Agha Jawad

I am having the same problem as yours. My CPK level is 750. It goes up and down. deltacoltrin is the thing suggested for me. Please let me know what can i do.

please do reply
aghajawad@hotmail.com

Tanya1228

My husband has Polymyositis, he is 31 years old. He has been diagnosed for 2yrs now, but not getting any better. He has been on Prednisone 20mg., and Methotrexate. They are now wanting to start him on Remicade, but waht about all of the side affects and deaths that have occured? Any comments? Also, his doctor is wanting to put him on permanent disability. Is anyone else on permanent disability?

Tuesday, August 09, 2005

Lisa Lester

I forgot to tell you my e-mail address lisalester.lescon@mts.net. I also wanted to mention to you that since the lungs and the colon are like brother and sister, colonics is a great option to keep the toxins clean out of the system! Have a blessed day!

Friday, August 05, 2005

Lisa Lester

You are a very strong woman! Amazing in fact. My father has been diagnosed with Pulmonary Fibrosis although he is quite a bit older than yourself. He is 69. It is a tough fight as he just went into remission after heavy doses of solumedrol. I found a great read in health-reports.com just click on pulmonary fibrosis. Also what has been helping him is the nutrition and omega's and HOMEOPATHIC HEALING. Dr. Nielson, the head of Canadian Homeopathic medicine has been treating him personally. She had him spitting up silica type spit and his oxygen has improved. His blood sugar was up to 18.8% and we brought it down within an hour to 6.8%. Even the doctors were amazed. I have dodgeballed surgery and have been healthy after many sick years of medication with the medicine of Homeopathy. I don't know if you are familiar with it, but it has done wonders for me and my son. They told my infant son that surgery was the only solution for a hydroseal (a blocked valve restricting fluid flow from his testacle). It was huge. Dr. Nielson said she could fix it and she did! Doctors were amazed once more. I am also a singer and believe in the music! During the process, I divinely wrote a singing prayer that maybe I can share with you.

Maria

Hi Lenor! It's been awhile since I gave you an update. I have PM also. I will start a new treatment IV Rituxan to bring me into remission and get me off the drugs that I am on. My last CK was 1093, I have not hit any number below 400. I have done the IVIG as well. What you described was steroid myopathy which can happen with long term prednisone use. I'll try to find youe email in my old computer and write you more ok? Hang in there and keep up with your journal becuse I love reading it !

Tuesday, August 02, 2005

Mary Self

What a story, thank you for sharing. In April of 2005 after suffering with Lupus and ITP for 4 years I took a class at NCC with Pam Leahy. I was amazed with all she taught us about food and herbs and I began as a client in May. I feel like a new person and my numbers have gone through the roof. My Docs cannot believe what her suggestions have helped me reach. I have a long and roller coaster like story of docs and medications and your story is inspirational. Let's keep up the good fight!

Tuesday, August 02, 2005

Fiordaliza

Hi
It is very encouraging to read your journal and know that you had go on with your life despite all the health challenges that you are going thru.
I was diagnostic with dermatomyositis on March 2005. I am being taking steroids since them (40 mg).
Today I finish my first dosage of IV IG
and I am still taking 25 mg of steroids

Thursday, July 28, 2005

A. Storyteller

Hey!
I am on your website... I don't see any pictures of ME! What's that about!?!? How can that be!?!?!

Wednesday, July 27, 2005

Jeanine Gallagher

Hi! I am inspired by you. Keep up the great work!! Mary Shomon's book, Coping with Autoimmune Disease, was also a great resource for me. My daughter has a chronic autoimmune thyroid issue with Raynaud's (her hands turned blue at school) and some other autoimmune features. She recently had dry hacky cough for weeks...pulmonologist...something on xray (looks like white spots-white flecks like a wet paintbrush was spattered on the xray...return in 3 months for another xray (CT scan with contrast was clean)...in limbo-managing her teenage years (age 13) with chronic illness. Diet has been crucial link-fast food=poison but the emotional aspects of teenage years and associated demands are the biggest challange. Keep on Keepin on!

Saturday, July 16, 2005

Martin Pickens

Hi,
Your story is a familiar one for me. In 2002 I found out I had type 2 diabetes; this was a shock with no history in my family I was in disbelief. I thought that was life changing, till a year later after having a chronic cough, and all the test, I had a open lung biopsy confirming pulmonary fibrosis, I have been on interferon, acctimune injections 3 times a week and have held my own till my last PFT it said I was losing some lung capacities. I know just what you felt when at age 43 the doctor told me I might live 5 years in some cases maybe 10 not fun to hear. I have two sons still in school, It was rough on them, hearing my prognosis, being my mother who they both were very close died of lung cancer two months before I was diagnosed. Thanks for you web site good luck with your battle I think we can beat this.

Wednesday, July 13, 2005

Matt B.

Hi Lenor

I was very pleased to read that you've regained your life, for the most part. It's always great knowing that there are success stories from the depths of darkness.

I have dermatomyositis. I was just diagnosed in December 2004, although I can recall having symptoms for about a year prior to that.

I'm not doing very well. I'm envious that you can be outside without worrying about the sun's UV rays. I unfortunately can't be exposed to UV rays. I live like a vampire, I rarely ever get outside. I only leave the house before sunset when it's absolutely necessary, which is usually for a doctor's appointment or a run to the pharmacy, how fun is that? Even so, I have to wear an annoying sunblock that makes my face look white. Under the white, milky face you can see the unsightly red blotches I have all over my face. I'm self-conscious, and depresssed. It's no fun having thick, velvet curtains in my bedroom to block out the sun's rays. I don't like not being able to wear shorts or even sandals in my own home, for fear that that sunlight will trigger a flare.

In addition to DM, I also was diagnosed with severe sleep apnea in April 2004. It was a double whammy, a very bad year. The CPAP I use for my apnea is only partially effective. I get maybe 2 or 3 hours of sleep per night, max. So besides all the muscular aches and pains, and knots in my back and neck, and fatigue that keeps me in bed for 2 or 3 days in a row, I have bags under my eyes and feel groggy all the time because of sleep deprivation. I have ugly, dark bags under my eyes because I don't sleep.

Last week I discovered I have a hernia, for which I need surgery. But the surgeon won't operate while on CellCept (an immunosupressant).

So life has not been kind to me the past few years. I'm a 42 year old male and thought my best years were ahead of me. I was wrong.

Thank you for allowing me to post. Your information is great, particularly your nutritional info. I also eat the same diet as you, with one exception, I do eat meat occasionally.

Take care and keep up the good work.

Matt
California

Sheils

Hi there Lenor
I was on the Sclero network and saw ur story. Amazing website! Very informative and inspirational. keep up that positive attitude. Congrats on marrying ur soulmate and have a great life.

Tuesday, May 10, 2005

Christine

I just wanted to thank you for your love and support the day Emerson was born. Can I tell you how nervous I was to ask you to be in the delivery room?! I was so sure that wasn't your "cup of tea", to say the least, and that you would politely decline. There are 3 days in my life that will always remain the most memorable; the day I married Kevin, the day Harrison was born, and the day Emerson was born. I am SOOO glad that you were there to share one with me (and Kev too of course!). All my love, (and the boys' too) Christine

Tammy Boscacci

I hope you read this Lenor. You didn't send me your e-mail at Christmas, but you did give me the web site address, so I can talk to you a little here. So sorry to hear about your mom. She was always very nice to me. Congratulations on your marriage. Shocked me---I thought you were a confirmed bachelorette. This is my 20th anniversary year. Can you believe it! It's hard for me to believe. Congratulations on all of the grandchildren and the delivery room experience. Since my three were c-sections and I was knocked out for 2 of them, I hope to be able to experience it when I finally have grandchildren. It will probably be awhile. Torio is 19 and doesn't even date, let alone have a steady girlfriend. He was on his own, but moved back last month. Tina is almost 15 and I don't let her date yet, but all of the kids (including Julie--13) hang at at a place that our church runs in town.
Starting in January, I started having some bad symptoms, including extreme muscle pain & weakness, exhaustion, etc. with the worst being Vito and Torio having to carry me up the stairs a few times in February. I learned to not do so much, but was still in a lot of pain, so in April, I started working part-time from home. I am still going through testing to see what it is (the leading culprit is fibromyalgia). I tried to go back to work part-time last week and just couldn't. So I have another month of leave and my benefits will be up, so I will probably take another job with less stress, since stress seems to make the symptoms infinitely worse. I was looking on the web for treatment possibilities and remembered your site, so here I am!!! Anyway, I would love to hear from you. I still think of you often. I'm not much for writing these days, but I do get on the internet every day. My e-mail is boscacci@bellsouth.net.

Saturday, July 02, 2005

David

Thanks Lenor for your web site. I was diagnosed 3 years ago with Polymyositis which has been an up and down battle. I now have Fibromyalgia and the methotrexate has casued chronic problems with pneomonia, bronchitis and now it has affected my intestinal tract and I was recently diagnosed with diverticulitis which will need surgery. I have visited other web sites by people like yourself, it seems we all react differently to the medications and side effects. It's just nice to know that your not the only one out there with this disease and that for everyone it is a battle. Thanks for taking the time to maintain your bew site and good luck in the future.

Wednesday, June 15, 2005

Sunny

Thank you for taking the time to put this site together. Its encouraging. My father has been diagnoesd with Pulumonary Fibrosis and we are all very concerned. My question is did you find accupuncture helpful? Do you think it played a role in stopping your disease? Is there a particular Accupuncturist that you would recommend. thanks a lot. You can write to me at zindagi0000@yahoo.com. Thanks again

Monday, June 13, 2005

Janet Brown

Thank you Lenor.
I found your site very informative. I was diagnosed with Wegener's Granulomatosis in Nov of 2004. I have vasculitis in my lungs. I am on Prednisone and Cytoxan. I too have gained 30 pounds. And yes, I am very distressed about it. I want to live a day at a time because my disease could go into remmission but there is no time table for this to happen. I recently had an MRI that lead me to go back up on the prednisone. Now I'm going to make a real effort to eat right and not give in to the weight gain. I'm not a vegetarian but rarely eat meat. I will try some of your food practices. I have one question. Were you able to lose weight while your prednisone was at 30-40 mgs?
Thanks, Janet

Friday, June 10, 2005

Rosa Rivera

I have Polymyositis and test positive for Jo-1 antibody. I have interstitial pneumonitis. Have you ever heard of the Antibiotic Protocol? It works. Read the book "The New Arthritis Breakthrough" which includes Dr. Thomas McPherson Brown's work "The Road Back". I am on minocyclin 100mg/day & zythromax 500mg/day and am down to 20mg/day of prednisone as a result. Check out the website rheumatic.org. There are a lot of us out there, and the antibiotics work. Our immune systems are not malfunctioning. There are microbes that the immune system is trying to get to and can't. If mold is your problem, you should be tested for mycoplasmas. They seem to be the culprits. I feel great considering I was in a comma a year ago on a ventilator due to respitory failure.

Friday, June 10, 2005

Ben H

Thank you very much for sharing your story (at the very least, it puts one's own into edifying relief), and especially for passing on valuable information that certainly helps one make very hard choices about drugs and the life. One day at a time, and hope it stays as happy as it appears to be. Thanks again. (PS: Nurse Margie H pointed me here. Be well.)

Wednesday, June 08, 2005

Conn

Hello Lenor,
I have been viewing your site from Ireland every month or so for at least the last year. I do admire you for your courage and stamina in dealing with the challenges you face.
I am sorry to hear about your mum, life does indeed throw up cruel twists of fate. I wish her strength.

I am 39 and embarked on my own journey of discovery 18 months ago when I was diagnosed with COPD. I enjoy your updates and photos very much and take a lot from your site, keep up the good work.
Take care, I wish you both the best.
Conn.

Tuesday, May 31, 2005

Jeff P. San Diego CA

Thank you for this web site and sharing your difficult experience as well as the information you've acquired and lessons learned.
My wife was recently diagnosed with scleroderma polymyositis overlap with lung inflammation, dry cough, etc.
We are researching this and she is under an immunologists care. Prednisone, Imuran and initial higher dose IV steroid therapy have been precribed. We are waiting to see how this works. thank you again for this information , it helps at a difficult time.

Wednesday, May 18, 2005

Melita R

Lenor,
Your website and story are very inspiring. I also have PM and am doing well right now. I wish you and your husband all the best. Keep fighting the good fight and educating the uneducated.
Everything happens for a reason. I have learned that although we may have this disease, the disease does not define us. Keep on keeping on!
Melita

Friday, April 29, 2005

Alvaro Nunes

Hi,
I'm Alvaro, 46 years and I have had IBM for the last 5 years. I'm form Portugal , i saw your site throught Myositis gorup. I hope ever thing is good for you and your family, my english is not very good but, I can read well but to write a letter i have some dificlut. I use brace legs and its help me so much.
Your site is very good
Have a nice day

Alvaro,

Thursday, April 28, 2005

Mary

Hi Lenor. I was so excited to find your website, and to hear how well you''re doing. It gives me hope.

I’m 28 years old and have had polymyositis for 14 years now. I’ve been on many different medications starting with prednisone. I was on the prednisone for about 3 years, and it helped a little. For about 2 years after that, I wasn’t on any medication at all, and actually felt a little stronger still…at first. Then, I began getting weaker, and so my doctor put me on solumedrol. I’ve been on solumedrol for about 8 years now. Throughout those 8 years, I’ve tried methotrexate and then cellcept along with my solumedrol treatment, neither of which really seemed to help. The last 3 years, I’ve been taking only solumedrol, one gram every 5 weeks, and I didn’t feel any better than when I started. I told my doctor that I wanted to try to get off of the solumedrol. I wanted to see how I’d do without any medication, and I had been feeling ok for the last 6 months…up until last week.

I’ve been taking ginger and tumeric for the last 6 months hoping that it would help. A few years ago I tried the diet that Dr. Weil suggested for Polymyositis (no meat or dairy), for 3 months and I didn’t see any improvement in my strength.

Throughout the last 14 years I’ve tried numerous alternative ways to deal with my disease. All of which I brought to my doctor first, and all of which he would either laugh at or simply say that it wasn’t going to help. I tried them all anyway. I go to see him 2 or 3 times a year, he does his little strength tests on me, and talks briefly about medication. He’s out of the office in 15 minutes or less. I have to practically stand in front of the door to get him to stay and answer whatever questions I have.

I want a new doctor. Can you recommend anyone? I want someone who will take the time to explain things to me, and who knows about alternative therapies. I live in Missouri, but will be willing to travel anywhere. I don’t feel quite as steady walking now since I got off the solumedrol. It’s very slight, but I’m scared. I don’t want any more solumedrol if I can help it. It makes me feel horrible, but I don’t know what else to do. I feel like I’m all alone trying to figure this thing out. I should have a doctor I can depend on.

Please, let me know if you have any suggestions on a doctor I can go to, or if you have any other suggestions that may help.

Thank you,
Mary abstract20@excite.com

Thursday, January 20, 2005 at 00:02

Cathy Reinhart

Lenor,
Thank you for a fanastic story of your journey dealing with devastating disease. Reading your story is so much like mine, it is scarey. Yes, I was diagnosed with polymyocistis,pulmonary fibrosis at the age of 44. I am now 48. I also saw Dr. Paul Noble at the Yale Hospital who suggested that I go on cytoxin. I also went to the Mayo Clinic in Scottsdale, Arizona. Listening to many specialist on how to treat this "Mixed Connective Tissue Disorder" with an organ involvement, I decided not to suppress my body. From the beginning, I was put on Actimmune, and prednisone since 2001. The Actimmune is for the pulmonary fibrosis and the prednisone for the auto-immune problem. The last three years, I would be in and out of the hospital with pneumonia, upper respiratory infections, and other problems associated with this disease. I couldn't figure out what I was doing wrong. I would have some good days that I can breathe with no problems. Then there were days, I needed to suck down some oxygen. Yes, I do use oxygen. However it is not 24/7. I only use it when I have a major coughing flare-up. As you had put it "coughing till you throw up". Well, this past fall, I have decided that the "conventional medication" isn't doing anything for me. By the way, I only have 38% lung capacity. I have been at 38% since being diagnosed in 2001. Well, since the conventional medication wasn't working for me, I have decided to check into the alernative medicine. I changed my life style completely. I changed my diet, only eating organic foods. Like you, I have cut out all process foods, cafeeine, yeast, etc. I am now reading a book about the benefits of drinking water as a natural healing process. I drink about a gallon of water a day. However, it is important to maintain a certain amount of salt in your diet. If you have a chance, go into the website: www.watercure.com. So far it has helped me. I have more energy. I can climb stairs and still maintain sat o2 at 93%. My overall sat o2 is 96-98%. However this can drop with exercise. My goal is to do more upper body weights, and stick with this stress free life style, along with my new diet and water treatment. Just to let you know, I am still taking prednisone with this water treatment. I'm taking 15mgs of prednisone, along with 100mcgs of Actimune three times a week. My GERD/gastro reflux has disappeared since doing this water-salt treatment, along with my joint pains. I have cut back on my over-the-counter "Aleve". Can it be that simple, that the natural products and water may actually put our disease into remission? :) I believe it can. Good luck to you, thank you for creating this website. It is nice to know that I am not alone and that there is hope.

Take care. Cathy from Boston

Wednesday, January 19, 2005

Catherine

Lenor, I am stunned. All this time we have been out of touch and I had no idea what you were going through.
Let's keep in touch, okay?

Tuesday, January 18, 2005

 

 

 

Disclaimer: I am not a medical professional nor do I have any medical training.
The information contained within this web site is based on my personal experience and my research only. 
I do not recommend nor do I endorse any of the treatments, medicines or products listed within the contents of this web site.