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    • #15669
      Steve Dragoo
      Participant

      Just Friday evening I watched this short video that starts with a huge claim “How to cure PF (not IPF) Naturally” – these suggestions are sound so please enjoy. https://www.youtube.com/watch?v=g9vGeLJAH8c

      Does anyone have any comment or info on WEI Institue, their claim is using an ancient Chinese herbal remedy for IPF with significant positive results, but I have no idea what the remedy is.  Here is a link to the article:  http://weiinstitute.org/pulmonary-fibrosis-treatment/.

      I read a few months ago that Metformin (for diabetes) helps IPF patients but find no more info available than the basic white paper.

      Last I read colloidal silver (careful confusing subject as most “colloidal” silver is ionic with +/- benefits to that story) may have a significant benefit to IPF patients.

      Anyone help?

      Wellness to you all… – SteveD

    • #15700

      Hi Steve,

      Really interesting – thanks for sharing this information with us! I am always skeptical when videos/online materials start with the tagline about how to cure a lung disease, so I appreciate your sharing that there is sound advice and information in it. I will take a peak at the link later tonight when I am at home and can give it the right attention 🙂

      There is some credible literature that highlights how beneficial certain Chinese herbs can be for those living with a lung disease, but I don’t remember what it is off the top of my head. I can try to find it for you if you’re interested though?

      The Metformin is still up in the air, I don’t think any proof has occurred in humans in terms of improving the lung disease. I know other members of the forums have also asked their physicians about this directly but none have encouraged the use of this drug for the treatment of IPF as far as I remember. I could be wrong, but don’t recall physicians really being proactive in prescribing this drug to PF patients. Does anyone have any updated information about this?

      Wishing you all well and thanks for the update Steve.
      Charlene.

    • #15707
      Steve Dragoo
      Participant

      Great Charlene – sharing is how we might find a significant way to live longer.  Is it the same article you shared in another thread? Thank so much – SteveD

      • #15716
        Denny Eliassen
        Participant

        Did anyone see the article from the foundation that a drug used for multiple myeloma worked better than esbriet on people with IPF in a study? Very interesting!!

        • #15760

          Hi Denny,

          No I didn’t see that – was that released from the Pulmonary Fibrosis Foundation? If so, I may have to go track it down as I am curious about this. I’ve heard about different chemotherapy drugs (Cyclophosphamide being one) being effective in managing IPF, especially when paired with a high-dose steroid. I wonder if this is the drug referenced? If you find the article, please do share it with us but I’ll also do some research to see if I can find it. It may have also been posted by Pulmonary Fibrosis News and I can ask our science writers to track it down if so. Thanks again!

          Charlene.

      • #15756

        Hi Steve,

        Thanks for getting back to me so quickly and I hope this note finds you doing well.

        Yes, you’re totally right – I’d already posted the article previously from Acupuncture today in a previous forum thread. There goes that memory struggle again, haha…

        It sounds credible, but again I worry about the credibility / sourcing of the herbs to be honest. I’m much more interested in what your friend’s wife (the one with the PhD) has to say about some of these Chinese herbs. If I find out any additional information/details, I’ll definitely share. Please do the same 🙂

        Cheers,
        Charlene.

    • #15708
      Denny Eliassen
      Participant

      I use the products from WEI institute one month out of the year and used it for two months in the beginning and each of my 2nd, 3rd and 4th lung function test improved and my CT scan showed almost no increased scarring in one year. I was diagnosed almost 2 years ago. I am going Thursday for my 6 month test and scan. I have been feeling very good and I play hockey 4 to 5 times a week. I am 68. I have posted about this before since there are some doctor testimonials on their website.

      • #15757

        Hi Denny,

        Thanks again for sharing this information, I’m sure many of us will be intrigued to try the WEI products based on your experience. I am so glad you’re able to continue to do the things you love, like playing hockey, and feel well after living with IPF for two years….this gives me so much hope! Things are getting harder for me (I was diagnosed 2.5 years ago) but not impossible, thank you for sharing a bit of your story 🙂

        Can I ask why you only take the products 1 or 2 months at a time? Is it due to the cost of them, as I know you said they are expensive? Do you have any side effects at all from the products you choose to take? I’m really not familiar with these products, so perhaps it is a guidelines on their end to only take them for 1 month increments, just curious as to why you take the products for a month. Looking forward to hearing back from you when you can…

        So glad you continue to do well and wishing you and your family a happy holiday season!
        Charlene.

    • #15714
      Denny Eliassen
      Participant

      Steve, I would try the products for two weeks to see if you benefit by them (soup A, soup B and LC balancer). They are expensive but well worth it to me. They have products for every condition but have had great success on respiratory clients.

    • #15719
      Steve Dragoo
      Participant

      Hi Denny – great! Thanks for your response.  I have only briefly looked at WEi and have to learn what’s available.  So do you go to their nearest location or other?  That will present a problem to me next March as I will be in the Philippines if all goes well.  Also interested in your tests this week if you want to share…SteveD

      • #15745
        Denny Eliassen
        Participant

        Steve -I just got back from my 6 month Lung function test at U of M and all of my numbers improved between 1% and 6%. He said no CT scan for 6 months and he is putting in this clinical test if I qualify for the phase 3 promising drug GLPG1690. My other pulmonologist at the Cleveland clinic was going to do that also since he trainer and friend developed the drug  5 to 6 years ago. The lab where I get the herbs is in Minnesota and they have one other place in California. Call WEI Labs and talk to Gabby if you are interested. I did get some Chinese herbs from my acupuncturist for much, much less money but I don’t know how well they work. The ones from WEI are specific for respiratory diseases. On a side note- I play hockey 3 to 4 times a week so I am in good shape. Most of my numbers are between 140% and 200% except for my bad number at 79% which is the CO2 and that is my concerning thing.

        Denny

        • #15758

          Hi Denny,

          I know this reply was to Steve, but I just wanted to say thank you for posting your test results and sharing the good news. Other than your C02 number, those are wonderful results and I am very happy for you! I’ll keep my fingers crossed that you do qualify for the promising drug in the clinical trial. That would be wonderful for you.

          Having a contact at the WEI institute is really good to have as well, thanks for sharing Gabby’s name with us. Do they just ship the products to you then? I suspect the herbs you got from your acupuncturist are similar to the ones I got as well but like you, I’m not sure whether they did anything or not. I hope you continue to do well, and thanks again for taking the time to share this information with us all.

          Cheers,
          Charlene.

    • #15746
      Steve Dragoo
      Participant

      Hey Denny – that’s terrific news.  I read a little about GLPG1690 a while back and just emailed the doc to see what she can do – also about Wei Institute.  I loved playing hockey on frozen ponds when I was a kid.  You are on the right track – healthy exercise, healthy eating, healthy breathing exercises.

      I think Wei quotes their herbal formula or at least I saw a couple of them somewhere.  This forum is a good place to keep each other and others informed.  I just concluded pulmonary PT and will be joining the neighbourhood gym until I return to the Philippines next spring.  Also, I take a couple of pills that I believe are helpful: Serrapeptase (enzyme for scar tissue) and Astragalus. I keep you posted… – SteveD

      • #15759

        Hey Steve,

        Please let us know what your doctor says about the WEI products, along with the GLPG1690 drug and if he/she can do anything for you to get connected with it. Always curious to hear what others’ physicians say, since there doesn’t seem to be one standard treatment method/approach for IPF.

        I couldn’t agree more re: the forum being a good place to keep us all informed. You do a great job of this, and I am very thankful for that 🙂

        Cheers,
        Charlene.

      • #15767
        Denny Eliassen
        Participant

        Just so everybody knows about WEI products: there are documented cases of people with IPF getting off of oxygen, many have improved and some have been cured even in advanced cases. I read about some of the cases in their “famous doctors” articles. They recommend 3 to 4 months for severe IPF and 2 to 3 months for moderate cases. I took 2 months originally and took a month of herbs a year later and a 2 week maintenance just recently. I truly believe that it has worked for me as did the GERD 2 week herb which I can’t remember the name. You can call Gabby at WEI (612-808-9234) and she will give you any info on the soup A,  soup B and LC balancer or other herbs. I get the capsules because the liquid tastes TERRIBLE! Also Amazon sells this also because I believe they buy from WEI and it is a little less expensive and with prime no shipping $. I got the Chinese herbs from an acupuncturist for my cluster headaches but only helped a little. Finally and very interesting is todays article “mutation prevents mucus in small airways as an IPF risk. That could be me!!!!!!!!!  If you search Galapagos you may be able to get into that GLPG1690 Study in Jan/Feb at U of M. It has been shown to reverse fibrosis with NO significant side affects!

        • #15774

          Denny, thank you so much for sharing these details – I know many other forum members will benefit from the knowledge you shared, so thank you! Having Gabby’s contact information at the ready for those considering WEI products will be really helpful, as is knowing you can get the products on Amazon. Since I am in Canada, and have a prime account, I think I’ll consider this route if I decide to order some of the products.

          Do you have any update from your doctor about the GLPG1690 study, and whether or not you’ll get to be in it? I can’t recall for certain, but I thought you had mentioned your doctor looking into whether or not you might quality for this study in the new year. Hoping you do 🙂

          Thanks again for sharing all of this information and happy holidays!
          Cheers,
          Charlene.

           

           

        • #15801
          Steve Dragoo
          Participant

          Hi Denny – what herbs would you get on Amazon that might compare to Wei.  So if Wei is expensive, what are we looking at typically for their costs?  If I take them on, I need to get that going soon so it is complete before I return to the Philippines in March.  Thanks – SteveD

        • #15818

          Good questions Steve, I’m sure Denny will get back to you about the herbs as soon as he can 🙂
          Do you think you’ll give Wei a call to inquire more about the herbs? Hopefully you can get it settled before you return to the Philippines. Hope you had a wonderful holiday!

          Charlene.

        • #15840
          Denny Eliassen
          Participant

          Sorry but my email accounts went down for 2 days. The products from Amazon was from WEI Lab, they were just trying to undercut their price a bit but I don’t know if they still sell them. They are very expensive about $900 for a month supply. It is soup A, soup B and LC balancer. Get the pills and not the liquid. The Chinese herbs that I got from my acupuncturist were only $50 for a 2 week supply but not specific for respiratory like WEI Labs. Wei sells 8 or 9 products for different lung problems, but the 3 that I got were for IPF and one has plant herbs that are supposed to stop and reverse the scarring. They have one to reduce phlegm, a couple for infection, one for inflammation, etc.  They say you will feel improvement within 2 weeks so I would try a 2 week supply if you are skeptical. I have had 4 function tests in 18 months and each one improved or remain constant.

    • #15765
      Steve Dragoo
      Participant

      Hi Charlene – I will and also when I hear back from my friend. Thanks – Steve

      • #15768
        Denny Eliassen
        Participant

        I believe that the GLPG1690 study is called ISABELLA.

      • #15841
        Steve Dragoo
        Participant

        Hi Denny – No worries I understand electronic failures after living in the Philippines for a couple of years.  Would you please specifically identify the products on Amazon also what is LC balancer?

        I am taking astragalus and serrapeptase pills from AZ and they are definitely helping with the cough and phlegm.  We can also privately email each other on this forum if that helps and I sent you a friend request.  Hope all is well and stays well.  Thanks – SteveD

        • #15868

          Hi Steve,

          Hopefully Denny will receive your message when he can, but I’d guess the LC balancer is a specific WEI products and may only be available through their lab/site. I tried looking it up for you, to see if I could get an answer, and this is what Amazon had: https://www.amazon.com/Wei-Laboratories-LC-Balancer-3-38/dp/B001WUJI1Y … not sure if it is what Denny was referring to? Just thought I’d offer up the link 🙂

          Hope you’re doing well. How was your Christmas?

          Charlene.

        • #16337
          Richard J Shank
          Participant

          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

    • #15769
      Steve Dragoo
      Participant

      Denny – what is Amazon selling?

      • #15775

        Hi Steve,

        I hope this note finds you doing well and gearing up for the holidays!

        I think Denny mentioned that Amazon offers the WEI products, as a means of getting them a little cheaper for consumers (especially for those with a prime account, who don’t have to pay shipping). Check it out if you’re interested, I’ve not been disappointed in Amazon purchases in the past, but Denny also kindly provided us Gabby’s direct information at WEI as well if you have inquiries about their products. Hope all is well.

         

        Charlene.

      • #15870
        Steve Dragoo
        Participant

        Hello Charlene – really thank you for the link for LC Balancer – above and beyond.  I will review it and post any relevant thoughts.

        LC Balancer is sold by third-party vendors on AZ and I cannot determine the value of it based on just a few reviews and lack of complete product information viewable on the bottle – also from what I can see on the bottle, it would be easy to make a daily tea buying the products on my own. WEI Labs has a general category for respiratory ailments and seems to use the same products for all of them – Soup A and Soup B. Without studies posted or clear assurance of quality, I would baulk at the cost but certainly would like more information.

        With the various different stage clinical trials coming up next year, it seems we are at the cusp of viable solutions for IFP in the next 18 to 24 months.  If something like Wei or supplements I take can sustain us until new enzymes that reverse scarring arrive then it seems worth it – wouldn’t you say?  I may figure out a tea to use based on the LC balancer. Stay well, happy and at peace – SteveD

        • #15884

          Hi Steve,

          I am so impressed at how you thoroughly evaluate things, and then are kind enough to share your thoughts/findings with us on the forum, thank you! If you do discover a blend of tea that is helpful and/or similar to the WEI products, please let us know if you wouldn’t mind.

          I certainly agree about being on the cusp of a breakthrough for IPF, and can’t wait to see where research is in the next two years. Keeping my fingers crossed that we can all be sustained until then! Thanks again for being part of the forums, and hope you have a wonderful new years eve and nothing but the best in 2019!

          Charlene.

    • #15791
      Steve Dragoo
      Participant

      Hi Charlene – blessed family holiday to you.  Yes I saw Denny’s post and will definitely seek more information.  This is potentially great news and exactly why I started this thread for us all to gain more hope and that we are not going through this disease alone…  Thank you – Steve

      • #15895
        Steve Dragoo
        Participant

        Hi there Charlene – I think my thoroughness was related to the dollar amount -hahaha.

        I did find the 3 ingredients in LC Balancer but for now I will not get them.  I take a mushroom coffee that has a little reishi in it if I remember right.  I will also get back to hibiscus tea soon as it also has some good heart benefits and most of us with IPF can use that.   So my tea will be various amounts of Rooibos tea, hibiscus tea, turmeric (powdered or fresh grated – steeped a while first) –  (always add a  little good oil and FRESH ground black pepper – increases the bioavailability of the turmeric up to 2000% more), real raw honey. When you use turmeric like that be aware it does increase its’ potency.

        If anyone is suffering from high BP the hibiscus especially helps that but so does powdered amla (Indian gooseberry).  Don’t take aspirin to thin blood if you use either of these. If you have a BP cuff you will notice a definite lowering of BP fairly fast so monitor to see if you need more or less hibiscus and amla over time.  When I use amla I generally take 1/2 the recommended dose and I am not small.

        So I will use these instead of the LC balancer but continue to learn more if I can.

        Looking forward to successes and wellness for all in 2019! – SteveD

        • #15904

          Hi Steve,

          Happy-almost new year to you!

          Your reply made me chuckle… I am pretty thorough when it comes to things pertaining to the “mighty dollar” these days too! I don’t blame you for being thorough for that reason haha…

          Hibiscus tea, that is an easy thing I could incorporate into my daily diet especially if it has some good heart benefits. I’ll just make sure it is good with my physician first, as I do have some heart complications but that is an easy one I can try too. Were the ingredients of the LC balancer that you found expensive? I should try tumeric again, it is just not something I am a fan of but it does sound like it has wonderful health benefits.

          Thanks for being part of my circle in 2018 Steve, and I look forward to continuing to connect in the upcoming year. Hopefully with some big things ahead for all of us with IPF!

          Cheers,
          Charlene.

    • #15794

      Thank you Steve, and I am so glad to hear you’ve found this forum helpful. Thanks for starting this thread – I am sure others will benefit from the information exchanged as well! Happy holidays to you and your loved ones.

      Charlene.

      • #15908
        Steve Dragoo
        Participant

        Hi Charlene – the LC balancer ingredients are readily available and inexpensive.  But I am going with B vitamin complex + the other supplements I use – adding in hibiscus tea turmeric rooibos tea – which is very safe lots of studies available.  I see the cardiologist mid-January after wearing a heart monitor for two weeks.  I’ll see what that brings but doubt I will change the supplements much except to possibly add to the regime with new beneficial funds. The serrapeptase and astragalus continue to help but that could be synergistic with the other things I take.

        Hope all is good for you and yours. – SteveD

        • #15913

          Thanks for the update Steve!

          I also take a Vitamin B+ complex, and have worn the heart monitor for the full 28 days which was so annoying! Thankfully, it didn’t show much but I do have some heart troubles, I believe directly linked to IPF. I hope your results don’t show anything concerning. Glad you continue to use the supplements you find helpful as well and thanks for the information again about the LC balancer. I think I’ll try tumeric again, making tea out of it, in addition to the hibiscus!

          Take care,
          Charlene.

    • #15834
      Jay Turbes-s
      Participant
      • #15867

        Hi Jay,

        Thanks for writing and I hope you’re doing well!

        Take a peak at the replies below and let me know if they answer any/all of your questions about the WEI products and the ASV. It was one of BioNews’ scientific writers who wrote the article you linked into your reply, so if you don’t find the answer you need, I can connect back with the writer of the article and see what I can come up with. Just let me know 🙂

        I can’t answer unfortunately, as I am not too familiar with either WEI or ASV products. Sorry about that, but would be happy to help you find an answer if there isn’t one below…

        Charlene.

    • #15836
      Steve Dragoo
      Participant

      @Jay Turbes-s ,  Hey Jay I assume you are asking Denny about that but have a brief comment.  I started taking astragalus a few months ago and added an enzyme serrapeptase a few weeks ago.  Noticed the biggest improvement in the past couple weeks in significantly reduced coughing and phlegm.  I believe the enzyme has been the biggest help but it may also be the combined effort of the two. – cheers SteveD

    • #15902
      Steve Dragoo
      Participant

      The final day – yes the end of a year and a new one begins in a few more hours.  To me, it is mostly a page turn of a calendar.  Sure as a family we reflect some to improve upon our journey but we don’t participate in the craziness outside the door especially during the late hours.  As a young adult, I learned New Year’s Eve was called rookie’s night out where I grew up.

      So I pray all here are blessed and find solutions and adjustments we all will go through in life.  I found this 48 page PDF about various diseases a good read with lots of practical ideas we can use right away.  Just a quick warning the author has several interesting products that I have no idea of their value throughout especially the last several pages.  There are several good ideas and I hope you will find them useful.

      Happy and productive new year… SteveD

      https://woats.co.uk/wp-content/uploads/2013/04/Healthier_Lungs_in_30_days.pdf

      • #15909

        Hi Steve,

        I love this post, thank you for sharing!

        I always feel a bit mixed up at the end of every year, kind of like bittersweet: sad to say goodbye to the good things that happened in 2018 (and, there were many) but also excited for the year ahead and also a little nervous as we never know what a fresh year will bring. Then on a different note, like you, I also think it is just another page turned on a calendar because we can always ‘better’ ourselves at any point – which is why I don’t like setting just random new years resolutions, I like being intentional about them (stay tuned: a forum post about that is coming).

        I also don’t really celebrate new years – I used to, and did the Times Square ball drop in NYC one year and never again! It was an experience but I was so cold, and ended up so sick after that. So, I am choosing to spend my night inside, with my pup and relaxing around my fireplace and Christmas tree before it gets taken down. Enjoy your night too!

        Thank you for sharing that PDF, very interesting and I’ll take a look at it to see if there is anything I want to implement in the new year 🙂

        Thank you for being part of my circle of support this year Steve – wishing you all the best in 2019!

        Charlene.

    • #15914
      Steve Dragoo
      Participant

      Hi Charlene – you must be a very fast typist.  There’s a lot of money in that especially court clerks…

      In the pdf I pulled out a few things I will look at more closely over the next few days and add what looks promising and healthy. If there is anything I will bring it up.  I hope this was the right place for the PDF because I would like t to get maximum exposure for everyone’s benefit.

      Me? I’ll just curl up with my laptop blanket (I fall asleep on the sofa watching youtube sometimes…) as I already sent my wife to the new year 13 hours ahead of me, hopefully she’ll be fine and can report to me in her morning if it is safe for the rest of us to journey to the future.

      Thank you for your many encouraging comments.

      SteveD

    • #15917

      Hi Steve,

      I am a pretty fast typer, I admit : many folks comment on this when they’re around me and can hear me typing. This includes my colleagues, who always say they know when I am typing due to the speed I type at. It is about the only thing I am “fast” / speedy at these days…. LOL!

      Curious to hear from you about what you find most promising from the PDF. I will also take a look! If you want to maximize it’s exposure, I can do a forum topic about it if you’d like? I’ll schedule one and mention that you originally shared it with us, but because of my ‘keymaster’ title, it would maximize exposure. Let me know if this would be something you’d like me to do, I’d be happy to if so. 🙂

      2019 is coming for us, and I am sure it will be a great year. I hope your wife had a wonderful new years and here’s hoping you get to reunite in a few months. Enjoy your evening and chat with you “next year”…

      Charlene.

    • #15919
      Steve Dragoo
      Participant

      Hi Charlene – I recognize fast typing when I hear it.  Mom could type a blazing 100+ WPM on the old manual Underwood.

      Please look at the pdf, if it has value please post as you see fit.

      Still haven’t heard from my wife about 2019, I hope I do before entering its’ portals in a few hours…

      SteveD

    • #15933

      Hi Steve,

      Thanks so much for your reply! Well, what is the verdict… did you make it into 2019 alright? LOL! 🙂

      Today, the first day of a new year, has treated me quite well and I got a lot accomplished today which I attribute to staying in and enjoying a quiet new years eve. Did you make it til midnight? I almost didn’t…

      It’s on my list this week to take a peak at the PDF for sure. Looking forward to hearing your thoughts too when you have some time to take a look.

      Cheers,
      Charlene.

    • #16392
      Karl
      Participant

      I had not seen this thread until today, 2/1/2019. Where have I been? This is interesting because if it’s truly effective for people in advanced stages of IPF, I wonder if it could “cure” my early stage situation.

      To me a cure would mean no further progression since I do not yet have a serious condition. I’m 81, quite active, nowhere near needing oxygen. I’ve just completed pulmonary rehab (I highly recommend it). My oximeter readings during the rehab were consistently high 90’s.

      I’m a foodie with an iron stomach and a melanoma history so I decided to take the Ofev route vs. Espriet. To my surprise my reaction to Ofev has brought me to my knees. I do not tolerate it well. By that I mean my quality of life has gone down the toilet, literally, pun intended. My attitude is very positive, but I wonder if there’s something better.

      Have those who have tried natural remedies experienced negative effects? I’d love to hear about your experiences.

      Could “Natural” alternatives be the answer for me? I intend to check into these threads thoroughly. Thanks to all who have contributed so willingly, particularly Steve Gragoo. Karl.

      • #16405
        Richard J Shank
        Participant

        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.

      • #16426

        Hi Karl,

        Thanks so much for writing, it is nice to hear from you! I didn’t know you had decided on the Ofev (apologies if you told me you were going to and I lost track), although so sorry to hear it is having an unpleasant effect on you. I know a few people who aren’t able to tolerate it, even with the additional medications to lessen the side effects. I am on Ofev and so far so good, although I am very mindful that people even develop an intolerance to it months later. What dose are you on? That is another big thing for folks, some are on 200mg and have to be titrated down to 100mg before they tolerate it. Totally upto you of course, I know you value quality of life so I can imagine how this would be really discouraging for you.

        I’m glad to hear your experience with pulmonary rehabilitation was positive. I am so glad I did the program here as well, as I found it very helpful and hope to do another “round”/course of it soon.

        I haven’t tried many natural remedies for IPF yet, although my naturopath did give me an article that listed a combination of herbs to try. I likely will try them though when/if I develop my intolerance for Ofev. Any chance you’d try Esbriet?

        Yes, I am very grateful for Steve’s contributions too. So glad you’re all part of this great, supportive and informative community.

        Take care,
        Charlene.

    • #16401
      Steve Dragoo
      Participant

      @Karl Hi Karl – Some say Wei works, I am not sure because I have not looked close enough.  To date, nothing is known to reverse IPF or cure it but some supplements help me. They probably help some and others not as much.

      We have A Dr. Andrew K. Hall DC on the Laser forum who has self-treated his IPF over 4 years and it remains stable. He is using a class IV laser so talk to him.  I go for a consult here locally in SW Virginia Wednesday and anxious to get started with the therapy.

      I take several supplements and they help mitigate some of the symptoms but I have no idea how they will affect you.

      When I first found out of the “official” diagnosis in May last year, I did ok for a while but then became willing to do/find anything that might help to slow the onset, without a kneejerk reaction.

      If you want to know what I use let me know.  I can swing around Sunday as I am tired after a very busy week.

      Talk soon,

      Steve

    • #16400
      Denny Eliassen
      Participant

      Karl,  I would seriously consider trying WEI products for respiratory (soup A and B plus LC balancer) pills. There are no side effects because it is an herb. I went from being ready to give up playing hockey to now playing 4/5 times per week and feeling GREAT! Both of my pulmonologists recommended NOT to take anti-fibrotics because my last 3 function tests have been stable or improved 5% to 7%. Go to famousdoctors.org and check out some patient results. If you are interested the herbs are expensive but call Gabrielle Dunn at 612-808-9234 in Minnesota. I took them for 2 months and then 1 month a year later. She will send you any information that you want. Good luck!

      Denny E

      • #16407
        Richard J Shank
        Participant

        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.

    • #16408
      Steve Dragoo
      Participant

      All – consider looking at and adding class IV laser therapy – useful for many injuries.

      At least one doctor has used it the last 4 years and no increase in symptoms.  He is working to compile enough data for NIH and others to demonstrate its’ viability. If you have the money, maybe consider Wei and laser together. Like anything, do your due diligence before spending. We all want that great fix and try to do our best with what we know.

      I am having some success with OTC supplements like serrapeptase, astragalus, B complex, Amla (Indian Gooseberry), D3 & K2 together. ALA-tr. Co-Q10 but will look more seriously at Wei and lasers soon. If lasers work, that is much cheaper than Wei unless Wei costs drop over time. Who knows, combined maybe they would be a powerhouse… – SteveD

      • #16414
        Richard J Shank
        Participant

        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?

    • #16409
      Richard J Shank
      Participant

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

      • #16415
        Steve Dragoo
        Participant

        Richard – dr. Andrew K. Hall introduced himself, just last week to the forum.  He has self-medicated using Class IV laser 4 years and I would say our expert to reach out to.  Look for the Laser forum – I am not that familiar how to find stuff here. Also, google Dr. Andrew K. Hall, DC in Sonora CA – there is a past class IV study by a well-accepted doctor in Egypt.  The link is on that thread too.

        Class IV is used in sports medicine frequently. There is no cutting or laser surgery. It is a deep penetration light therapy that heals – how I can’t say except our bodies respond by healing quicker – that generally means inflammation is reduced and some are reporting increased breathing and activity capacity. I start Wednesday w a consult in SW Virginia and hope it will begin treatment. – Steve

    • #17373
      Denny
      Participant

      Richard, Have you had any luck on the WEI products so far? I started feeling better playing hockey in about the 3rd week. Its almost like I am in remission right now but I don’t know if that is possible. Post back to let us know how you are doing. Good Luck!!

    • #17385

      Hi @rjshank,
      I hope this note finds you doing well. Just tagging you quickly to see if you saw Steve and Denny’s replies back to you, above? Not sure if they will be helpful, depending on where you’re at now but if interested, you can read them above 🙂

      Take care,
      Charlene.

    • #21288
      leontis teryazos
      Participant

      Has anybody tried WEI products since the last above post?

      Denny/Richard, how are you guys doing the last few months on the WEI products? They are very expensive and make many claims about being able to reverse lung damage so am skeptical but want to keep an open mind.

    • #21290

      Hi Leontis,

      Nice to hear from you, how have you been doing? I have to admit, I haven’t tried WEI yet either due to the cost, and I think the “verdict” is still uncertain as to their claims and how they say they can help those of us with IPF. That said, there have been a number of people including Denny and Steve who mentioned that they think Wei is helping them. It is hard to be skeptical when folks have a positive experience. Hopefully they see your note and let you know how it has worked for them, both different experiences but seemingly positive.

      Take care,
      Charlene.

      • #21298
        Steve Dragoo
        Participant

        @let666

        Hey Leontis – I was not interested in Wei so much because the claims are too vague and the cost. But I  knew when I returned to the Philippines, there would be no more laser treatments for a long time so I decided to try Wei. I started 1 week before returning here in mid-May. Some had said maybe 2 months would be good but after 2 months I was not experiencing any changes I could note. So when I contacted my account rep, she then told me for the first time it could be 2 – 6 months for significant results. I was not prepared for this but I gulped and plunged in for month 3 and then month 4. In the middle of month 3, I really started having more energy, much-reduced cough, more stamina. That decided me on month 4 and I could have (should have) stopped mid-month 4 and saved the rest for the “maintenance dose needed maybe 2x per year.

        So I have not been on any O2 for 4 months and get up at 4 AM daily to fix my wife and me hot calamansi juice, start laundry, start rice and potatoes, fix coffee and enjoy the quiet for a while before my sweetheart has to get up.

        O2 readings are steady in the mid to high 90’s, heart rate is reduced (could be from other things I do) and Wei may help PAH. These are subjective but I will continue Wei when the need arises. Had no problem shipping over here.  I call Wei a success after my original skepticism BUT each of us will have different results because ILD and IPF come in many avenues. – Steve

    • #21334
      leontis teryazos
      Participant

      Looking over the 3 Wei products for tespiratory problems do not see why would need more than the one that reduces scar tissue and fibrosis. Seems like a waste of money to use other 2. However, could be wrong and that is just my initial reaction.

    • #21339
      Steve Dragoo
      Participant

      @let666

      If you are referring to Soup A, Soup B, and L/C balancer – they come as a package together.  Also, you may need 2-6 months as I did 4 months and will do a maintenance round probably at the end of this year…  – Steve

    • #21340
      leontis teryazos
      Participant

      If you mean they will not sell them seperately that makes me very suspicious, especially since they are charging what seems to me very excessive prices.

    • #21341
      Steve Dragoo
      Participant

      @let666

      They seem to work better as a package and I don’t know if they sell separately but why would you only take part of a medicine? Yes, they are pricey and I definitely would have balked if I had known I need up to 6 months, however, they helped significantly.

      So I took them for 4 months instead of 2 I thought would work. Mostly I noticed very little difference until month 3 and now post pills 3 weeks, I have stayed the same.  – No O2 for 4 months but I do take a number of different supplements and I think that each person’s response may be slightly different since there are a number of different pathways to this dreaded disease.

      Ideally, I will do pills and laser when I get back to the USA as Andy is/was doing. Hope that helps. – Steve

    • #21356
      John Oman
      Participant

      @rjshank

      Hi Richard. Hope you are doing well. I’m a newbie here and just started looking into WEI. On Feb 1 2019 you indicated that you just started taking their products. I haven’t found any subsequent comments from you regarding how you are doing with it and what you think. If you have, could you point me in the right direction?

    • #21634
      leontis teryazos
      Participant

      Dennis,

      In your Dec 20 post you said your only bad number was CO2 at 79%.

      Think this means you are not expelling enough CO2 when you breathe out. Has the CO2 number changed since you have been taking the Wei products? Believe to test your CO2 level you need to do an arterial gas test. Do think it is part of a PFT test.

    • #21675
      Denny
      Participant

      Leontis, my co2 level was 59% at diagnosis. It has improved to 69%, 72% twice and 89% in my last lung function test in June after the WEI lab herbs.

    • #21676
      leontis teryazos
      Participant

      Denny,

      I have a feeling you are not referring to co2 as this is not measured in a pulmonary function test and needs a special blood test to be measured. Are you referring to your oxygen saturation level, which is known as sp02 and is nmeasured by a liitle device you put in your finger?

       

    • #21679
      Denny
      Participant

      No, those are my percentages on my dlco on my function test. 59% at diagnosis and 89% in June.

    • #21680
      Denny
      Participant

      Leontis, I am not exchanging gases and my carbon dioxide is not being expelled as it should. My Oxygen level ranges from 95 to 97 on my finger.

    • #21681
      Steve Dragoo
      Participant

      @deliassen

      Deeny – how do you know co2 is not expelling properly? Also, do you have PAH (is your heart rate high and P, Artery high BP)? – steve – Post Wei 8 weeks and doing pretty good…

    • #21691
      leontis teryazos
      Participant

      An arterial gas test is really the only way you can find out if expelling co2 properly.

    • #21693
      leontis teryazos
      Participant

      Denny,

      Do you think the DLOC improvement could be due to anything else except the Wei products? For example if you stated playing hockey again you probably improved your lung function quite a bit just from that. I am also a hockey player and notice a big difference in lung function when I play regulartly. It is like doing interval training.

    • #21732
      Denny
      Participant

      No, it was absolutely the WEI herbs. I was close to quitting hockey after 50 years because my breathing was decreasing rapidly. I took the herbs for 2 months and my breathing was greatly increased!! everyone on this forum that has taken Wei herbs has improved, in fact everyone from the west has improved.

       

      Denny

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