Forum Replies Created

  • richard-j-shank

    Member
    May 12, 2020 at 10:22 am in reply to: New treatments

    Looks like I’m a day late and a dollar short to comment but I will anyway.

    Like everyone else, I agree.  This CV is attacking lungs and causing scarring.  With all the research surrounding this, we just might get some useful treatment from it.  Or, at a minimum, we might get more attention to the IPF problem by the researchers.

    For me, I have had great success with Chinese herbal medicine (Wei Labs).  It is not a cure and can’t fix my lungs.  However, it seems to keep my lungs soft and my symptoms in check.  I’m also not getting worse anymore.  Well, not fast enough that I’m noticing it anymore.  Hopefully I can hang in there long enough for them to find a better treatment or a cure but I’m not holding my breath.  That was a joke.  I have a morbid sense of humor.

    Best wishes to all

  • richard-j-shank

    Member
    March 19, 2020 at 12:53 pm in reply to: Eastern Medicine alternative

    Hi,

    I’ve not taken that medicine but I have been taking Chinese herbal medicine for the past year.  Several months I used the IPF from Wei Laboratories (~$1000 per 28 day supply) and on several other different months I used a ‘soup’ (about $250 per month) prescribed by a Traditional Chinese doctor in Seattle.  My wife brews the soup for me based on the herbs prescribed by the doctor.  I have also been taking esbriet since 2 months after I started eastern medicine.

    When I first started the eastern medicine, my chest was very tight and it hurt to breath.  I had a lump in my throat that felt like an apple and was very uncomfortable.  All that went away after several months.  I am short of breath but my lung tests from my pulmonologist over the past year are stable.

    I don’t think I’m getting better as far as the scarring in my lungs but I do feel significantly better in quality of life.  I also have severe allergies which aggravate this problem a lot so I’m taking Zirtec and Mucinex daily.  On really bad allergy days, I take a dayquil or nyquil to get me over the hump.

    Also, as the drop in oxygen during activity will increase heart rate, I take CoQ10 2 or 3 times per day.  This helps keep my heart healthy.

    My pulmonologist (and most of the people in his office) think eastern medicine is nonsense.  He wanted me on oxygen 24/7 15 months ago.  The Chinese Traditional medicine say don’t use it.  They believe it makes the disease progress faster.  So, I have not done oxygen over the past 15 months.  This upset my pulmonologist when I told him I wasn’t doing oxygen at the direction of my Chinese doctors.  However, the proof is in the pudding.  I’m doing very well considering.  He has stopped badmouthing Chinese medicine but I’m certain he believes this is all from the esbriet.  I’m not dropping either as going downhill with this disease is a very poor option.

    This has just been my experience.  I can’t say how it will affect others.

     

  • richard-j-shank

    Member
    March 3, 2020 at 12:21 pm in reply to: So upset

    What I have is 100% fatal and 0% contagious.  Thank you for your concern.  Next!

    If they continue to be obnoxious, “I really wish I could give it to you”.

     

    Sorry, like Mark, I’m not very politically correct either.  🙂

     

  • Just another data point:

    I was diagnosed with IPF 2 1/2 years ago.  Nobody in my family or extended family that I know of has this.  I’m special. {place facetious smiley here}.

    Me?  I did many things wrong.  I am 66 and I did smoke off and on from the age of 13 until about 60.  I smoked continuous from 13 until about 22, quit for many years but smoked occasionally.  Then smoked a pack a day for about 5 years in my 40s.  Then quit again for about 10 years (smoking on holiday vacations only) until about 54 when my job became too stressful.  I smoked about 10 cigarettes a day at work.  I had been able to quit relatively easily when I was younger.  I could smoke a pack a day for 2 weeks while on vacation and then come home and not smoke at all.  However, something happened in my mid 50s where smoking took over my life.  Finally, around 60, I just stopped and swore I’d never smoke again.  When I smoked, I smoked both regular and menthol.

    I was diagnosed at 64 with IPF.  Yeah, it’s the I (idiopathic) that is the big issue.  My doctor told me that if they knew the cause of my scarring, they could likely do something.  However, because they don’t know the cause, they’ve got nada.

    I turned to Chinese herbal medicine because my Chinese doctor friend told me China has had a treatment for this (turns out for over 1000 years).  It is not a cure but I think that it really slows the progression of the disease because it is just herbs that improve the health of the lungs.  I cough a lot and I’m often winded, but I refuse to lay down and die.  I’m doing well and I hope to be here 10 years from now.  My father is 94 and even his doctors tell him he’s going to make 100.  He exercises daily, never smoked, and only used alcohol in moderation and even then, he didn’t start drinking until he was about 80.

    In a nutshell, in my case, it is likely not genetic, but environmental.  I’m sure there is a genetic disposition to it all but I think I’m just lucky in my family.  My sister is one year older than me, smoked from the age of 16 until 61, has all the other issues I have (diabetes, sleep apnea, gerd) that are likely causes of this disease and she doesn’t have it (yet).  She’s abused her body much more than I have.

    I think a survey should be created with all the known possible life choices and stimuli that possibly lead to this disease.  We can all check off the items that we are associated with and then tally the results.  It is important to be as open and honest as we can so the results are valid.  Of course that implies anonymity to protect the people in the survey.

  • richard-j-shank

    Member
    February 11, 2020 at 11:14 am in reply to: Prognosis Predictions for IPF Patients

    My American doctor told me this time last year that he wanted me on oxygen 24/7/365.  My Chinese friend (who is a doctor in China) simply said, “don’t use”.  The Chinese medical community think supplementing oxygen causes the lung cells to age faster which basically leads to earlier death.  My American doctor was visibly upset when I told him I would not use the oxygen unless I really needed it.  I’ve got the equipment and have never used it.

    So far, using Chinese herbal medicine combined with Esbriet, my PF seems to be very stable.  I have only been doing these for the past year.  Before I used these, my lungs went from 70% down to 49% in a year and a half.  My last two tests over the past year were 50% and 53%.  I get tested again in March.

    I don’t think I’m improving but my quality of life is much better.  Before I had an uncontrollable cough and my lungs seemed to be stiff and it hurt to breath deeply.  There was also a gross feeling in my throat.  Now I feel just like I did before this disease except I can’t keep my oxygen level up with any kind of movement or exercise.  Climbing up a flight of stairs causes me to slightly lose my breath.  It’s been like that for the past year.  Before that year, taking a shower would lead to a 10 minute coughing fit.  Now, it’s a 5 second coughing spell.

    The Chinese herbal medicine I have been taking is the Wei Laboratories Soup A, Soup B, and LC Balancer.  I took that for 3 or 4 months last year.  Then I found a Chinese herbal doctor in Seattle and used his medicine until December when he went back to China for a visit.  I have been on Wei Laboratories since then.  Each has made significant improvements in quality of life.  Both had their own strengths.  Wei Labs is expensive ($1000 per month) and the other is about $250 per month but tastes horrible.  If you just drink it down warm, you can easily get used to it.  The Wei Labs pills are easier to use but the capsules are sticky and tend to get stuck in the throat unless you flush them down well with water.

    Another thing I use is Nin Jiom Pei Pa Koa.  This is a 150 year old Chinese cough medicine.  It’s primarily honey with and menthol.  It was created by a Chinese herbal doctor for a friend whose mother had a terrible cough.  Nin Jiom means in memory of you mother.  Pei Pa Koa means loquat syrup.  You can get this at Asian markets for about $8 per bottle or on line for about $13 per bottle.  It’s good for the cough and healthy for the lungs.  Watch out diabetics, its high in sugar.  I have had to increase my metformin and glimeperide to compensate.

     

  • richard-j-shank

    Member
    January 16, 2020 at 11:13 am in reply to: Is it time to give up Christmas?

    About ten years ago my mother asked me what I wanted for Christmas.  I told her, I want to never have to do this again.

    I left the nest when I was 17 to join the Air Force, except for college, I’ve always lived far away from family.  Every year, I was the one who traveled home for Christmas.  I had to either ship everything, pack everything, or rush out and do Christmas shopping in about 3 days before Christmas.  Then I had to either ship the gifts we received or pack them to travel home on the airplane.  Over the years I did this with by myself when I was single or with my family after marriage.

    Christmas is such a hassle and really only benefits the children and corporate America.  My wife and daughter are Chinese and it was just a couple years after they came here that I asked to end Christmas.  They don’t have Christmas in China so they never missed it.  My mom has passed since and my father has everything he needs.  I usually take him and my extended family out to eat at their favorite restaurants when I visit.  The rest of the family still does Christmas but I just ignore it.

    I don’t miss it in the least.  I still spend over $1000 every year packing my family up to visit.  Except for my mom and dad, nobody has ever come to visit me.  I feel I do my part and if people don’t like it, oh well.  No more hectic Christmas shopping with impatient drivers and discourteous shoppers.  I’m done and I’ll never do it again.  Actually, I really object to the obligation of gift giving.  I give freely all year long to friends and family.  I take them out to eat or give them things they need on the spur of the moment.  My step-daughter is in grad school studying to be a physicians assistant.  I paid for her undergraduate studies completely and I pay 100% of her living expenses while she is away at school.  The only thing I can’t pay (as I’m now retired) is her tuition for PA school.   She has never paid for a car, gas, maintenance, car insurance, health insurance, rent, utilities, etc.  My wife and I have two accounts, hers and ours.  She not only keeps all the money she makes, I give her more each week (direct deposit).  I make 10 times what she makes so while my wife feeds the family, I pay for everything else.

    Some people think I’m just a Scrooge.  I know better.  Bah humbug.  Screw Christmas.

    P.S.  My step-nephew came here from Hong Kong to go to the local university 6 years ago.  I have housed him, fed him, provided auto insurance and gas (he shared my step-daughter’s car).  We haven’t charged him a dime for anything.  I also gave him an electronics experimentation kit so he could build a lot of electronic projects to get some experience to go with his electrical engineering studies.  When his laptop broke, I bought him a desktop.  He just finished his masters in electrical engineering and is searching for a place to do his PhD.  He’s so smart he’ll probably get a full ride for his PhD like he did for his masters.  His current university has already offered him a full ride for his PhD but he wants to go to a significant university for his PhD.  We’re retired and we’re going to sell our house soon and move on.  We don’t know where he will go next for his PhD but I don’t think it will be with us.  We are now empty nesters.  Good thing.  I don’t make the big bucks anymore.

    Merry Christmas

  • Changed my mind about posting but can’t see a way of cancelling.

  • richard-j-shank

    Member
    September 12, 2019 at 7:50 pm in reply to: Have you tried a Salt Room?

    Funny you should ask.  When I was little we would go to the beach often.  I noticed that after swimming in the ocean my wounds would heal faster (I mean, MUCH faster).  When I was told there was no cure for this fibrosis I wondered if inhaling salty mist might help heal the lungs like the salt water did all my scrapes and cuts.  I was afraid to try this because I wasn’t sure.  Now I’m thinking I should get a vaporizer and put salt water in it.  Of course, I could always go to a mineral spa and sit in it for some time.

    Either way, what is working for me is Chinese herbs.  I have stopped going downhill and have been stable for 9 months.  I was going down pretty aggressively but I started Chinese herbs (Wei Labs at first) in March.  Then I found a Chinese doctor in Seattle and I’m using his ‘soup’.  My wife is Chinese and she cooks the soup up for me daily.  Yuk! But it works so I drink it twice a day.

  • I’m doing a google search and I can’t find anything related to lasers and IPF.  Do you have any links/info?

    What are they doing with the laser?  I’m assuming cutting off scar tissue.  What keeps it from growing back or do they just keep cutting off more scar tissue periodically?

  • And a hearty thank you to you Denny for telling us about Wei Laboratories.  I received my Wei Laboratories shipment today.  I’ll take my second dose in about an hour.

    This is way cheaper than pirfenidone and I won’t get sick taking it.

  • I just received my Wei Laboratories package today.  For $956 I got enough for exactly 28 days (a February month – I’ll see if I get 31 days worth next month).  They only sell the pills (capsules) now so you folks don’t have to worry about the horrible tasting liquid.

    My next checkup is in March.  I’ll post my results then.  I’ll also post how I feel every couple weeks.

    Also, my wife gave me Nin Jiom Pei Pa Koa.  You can get it in Asian food stores for under $10 for 300 ml.  One tablespoon three times per day will last you 2 weeks.  It’s an herbal Chinese cough syrup that is also considered to be healthy for your lungs.  In other words, even if it doesn’t help, it won’t hurt you either (and it’s cheap to try).  I started taking it on Monday and it has calmed my cough considerably.  It isn’t intended to cure IPF (and nobody I know of is making that claim).  It just makes me feel more comfortable.  I can also breath deeper than before I started taking it.  I don’t feel the same tightness in my lungs.  I also don’t get as tired as quickly.  For those who worry about the taste, it’s surprisingly good as it is mostly honey and has a little menthol added.  It tastes better than any American cough syrup I’ve ever had.

     

    My wife is Chinese.  I brought her to America 15 years ago when she was 37.  She claims she has seen many Chinese people over the years, with coughs much worse than mine, take Chinese medicine and get better.  My wife is not a doctor but my best friend in China is.  He is a senior Chinese doctor of internal medicine (pulmonology is not his field but he’s certainly not ignorant of the subject).  I told him of my diagnosis with IPF and he doesn’t think it is any big deal.  Apparently the Chinese have been dealing successfully with severe lung issues for centuries.  His recommendation was for me to try Chinese herbs and he thinks my bigger issue is anxiety (and likely the root cause of my lung issues).  I told him my doctor wanted me on oxygen 24/7.  His response – “no use”!  Apparently, the added oxygen causes your cells to age faster (oxidize) causing the lungs to get worse faster (put that in your pipe and smoke it).  This is common knowledge in China (even outside the medical community) but hasn’t seemed to make it to western medicine.

     

    If for some reason I don’t get results from the Wei Laboratories treatment, I’m heading to China to find a Chinese pulmonologist.  Everything I’m reading is telling me that western medicine not only has no cure, they don’t even have a reasonable treatment.  The medicine is too expensive and makes you sick so you can live a couple more years.  How could I do worse with Chinese medicine?

    The only real hope I see of a western cure (from my research) is with genetics.  It’s close but still might take a few more years.  My objective is to live long enough for genetics to replace my lung cells.  If I don’t make it, at least I didn’t give all my money to American pharmaceutical companies before I died.  My wife will have that money to live on instead.  She’s done far more for me than American pharma.  :^)

    Finally, I don’t expect to have any “side effects” from the Wei Laboratories treatment.  Chinese medicine is basically food (herbs, spices, tea, vegetables, roots, stems, flowers, etc.)  They already know foods that make people sick.  They select foods that make people better for their medicine.

    I hope I didn’t upset/offend anyone.  I’m just a terribly cynical old engineer that too often speaks ‘matter-of-fact’-ly.

    Rick

     

    EDIT:

    With regards to “no use” oxygen.  What the Chinese doctor was saying was don’t use it all day, every day.  It’s ok to use it when you need it.

  • Hi Denny,

    I saw your posts about Wei Institute and I’m trying to get hold of them.  I sent them a message through their web site and they sent me some info and a short intro letter stating that someone would contact me ‘shortly’.  It’s been 2 days and nobody has contacted me.  I tried to call but I just get an answering machine.

    I’m not sure if it is best I travel to Wei for them to check me out or if it is ok to just go to one of their local reps.  Can you give me advice as to how to best make contact?  I live in the Wichita, KS area but I’m perfectly willing to go to Wei Institute.

    I’d like to get started on the treatment as soon as possible.

    Thanks,

    Rick