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    • #27206
      Sam Gilmore
      Participant

      Has anyone had experience with the WEI Institute?  From my research it sounds promising but it is expensive.  Any information that you may share would be helpful.  I am considering trying the program. Thank you Sam Gilmore

    • #27210

      Hi Sam,

       

      I don’t personally have any experience with Wei, but I do know some members have tried it can likely share what their experience was like with the herbs. @steve-dragoo and @denny-eliassen do you mind sharing?

      • #27234
        Allan Byron
        Participant

        I started the Wei regimen 2 months ago

        I am still taking it as of today but don’t see any benefits on me. I may try it for another month and if no improvement I will stop it. I am paying almost  a thousand / mth.

        • #30466
          Bev
          Participant

          If it hasn’t worked after 2 months it will not work. Any unopened product can  be returned for a refund.
          try Mullein tea and extract

      • #27244
        Sam Gilmore
        Participant

        Thank you for your input about WEI it is very expensive and from what I have read I don’t think it will help me much. I am going on my 5th year with this thing IPF it has affected my life allot but I am still doing pretty good am on oxygen when I  some what  active life. not like before. I am enjoying my family and my 9 year old and 3 month old grandchildren.  Again thank you for your info. My wife is an Herbalist and I am just going to stick with what she suggests.

        Sam

        • #30462
          MaryLou Ward
          Participant

          Your wife knows herbs.  Wish she was mine. Lol

      • #27303
        sherman jones
        Participant

        Hi I looked at them and thought they were extremely expensive. I have been using a herbal drink made of 2 teaspoons of honey, 1 teaspoon of ground thyme and 1 teaspoon of ground ginger. Seems to have helped but is so difficult to really know. Has reduced the cough and expectorant as well. Try it. Can’t see it being and harm.

         

        • #30354
          Bev
          Participant

          Ground Thyme I  have read

          is good for cleaning lungs. Did you make this solution or can it be purchased?

          thank you

    • #27215
      Denny
      Participant

      Hi Sam,

      I used the herbs from WEI Labs for 3 months when my fibrosis was progressing back in 2017, and for 1 month in 2018 and one month in 2019 to keep me stabilized. I had a lung function test last month and it was the same as my original test when I was diagnosed, in fact a couple tests should my numbers improved the last two times and I believe it was because I was back playing hockey. So I have been 100 % stable since my diagnosis. I have used their herbs for a couple other things like GERD and they really work but they are expensive. Ask for Frankie if you call there.

      Denny

      • #27304
        Carlo De Pellegrin
        Participant

        hi Sherman, thanks for the comment on this thread. I really don’t have much of an issue with cough or clearing flehm in the morning. i do wake up with a “sore throat which i guess is gunk (very technical term) but it disappears as soon as I have a glass of water or couple sips of coffee.

        My concern is that the Esbriet is supposed to only slow down the deterioration of my lungs. I want something that will stop the deterioration or maybe even repair some of the damage….hopeful thinking??

      • #30476
        Nina Merendino
        Participant

        I will! Good for you!!

    • #27235
      Carlo De Pellegrin
      Participant

      Denny, I think ! saw your reply earlier and can’t find if I questioned it then or not?  Are you saying your plateauing was because of the Wei products or because of the hockey? Are you saying the Wei products only helped with your GERD?

      Apologies for the repetition, if so!

    • #27247
      Denny
      Participant

      Carlo, it was the herb because I was playing hockey while my breathing was getting rapidly worse. I ordered the herbs and in the third week I started noticing a difference. There are many cases where people would go off oxygen, in fact, I believe Steve Dragoo was able to quit oxygen and the doctor on this site. I did go to Germany and Austria around that time and visited every cathedral and lit a candle so maybe divine intervention played a role. My next lung test improved and my 4 tests since have been the same or better. As far as the GERD I tried it for two weeks, had a manometry test right after and it showed ZERO trace of GERD! I ordered a month worth of tea for immunity for COVID-19 and a two week supply of herbs that showed a 90% cure rate in Wuhan. I keep it handy in case I contract the disease. Maybe that is why China is so far ahead of the other countries. I their herbs definitely work for me.
      Call Frankie at 6128088785 and she can give you any info you want.

      Denny

      • #30323
        Bev
        Participant

        I tried the Soup A and B liquid 3 years ago which they no longer have due to packaging etc. Did the liquid help me, yes quite a lot.  I called a year ago to order more and was told it is now in capsule form.  I ordered anyway thinking they would not cheange something that doesn’t work.  Well it is absolutley nothing like the old liquid version of soup A and B formula.  I have voiced my feedback in hopes that others will as well.  I also out of desperation just tried the Clear Lung capsule and that did absolutley nothing to help.  I just paid 189 dollars for nothng.  I am requesting a refund but haven’t hear back.

        • This reply was modified 1 month, 1 week ago by Bev.
    • #27258
      eileen d koster
      Participant

      Have these herb from WEI or other sources been okayed by your pulmonolgist?

      Eileen Koster

    • #27265
      Denny
      Participant

      Yes Eileen, by both docs at Cleveland Clinic and U of Michigan. They don’t endorse them because they don’t study them but said to take them if I believe it is helping. No side effects, just better breathing.

      Denny

    • #27267
      Carlo De Pellegrin
      Participant

      Eileen , Denny

      Thank  you both for your comments. I will speak to my new local respirologist in a virtual appointment in a couple of weeks and discuss with him at that time.

      Carlo

    • #27283
      Jill
      Participant

      Thanks, this is very useful. Denny, are you on ofev? We asked my husband’s pulmonologist and he had no opinion as to the Wei Inst herbs efficacy, and so far no one on the IPF Facebook groups has had good results, or knew if it was a safe protocol while on ofev. We asked the specialty pharmacist if they need of any reasons not to take western herbs, Chinese herbs or the Wei Inst herbs specifically and they had nothing useful to say. I’m going to contact the customer care center at Ofev and ask, but it’s good to know you’ve asked your pulmonologist and they said go ahead. If anyone on ofev has tried them, or any other herbal lung protocol, I’d love to know what your pulmonologist says, and if anything has worked to improve symptoms. Thanks!

    • #27293
      Carlo De Pellegrin
      Participant

      Jill, Thank you very much for your comments. I am on Esbriet, since end of September, 2020. I am scheduled to virtually meet a new respirologist in a couple of weeks and get his opinion then.

    • #27296
      John Weitner
      Participant

      I did a 3 month trial of the Wei products shortly after I was diagnosed last August. For me it is impossible to say one way or the other if they had any benefit.  In addition to OFEV,  and medication for acid reflux, I was taking quite an assortment of other vitamins and supplements prescribed by my Naturopath. As well I started using a treadmill daily for 30 minutes and lost 20 pounds.  I have seen some improvement – but impossible to know if WEI made any difference.  Their products are too expensive for what they are. If they were say $300 a month I would keep using them.

       

    • #27297
      Jill
      Participant

      Thanks for sharing your experience! Bummer that you couldn’t tell a difference after investing so much money. Did you by any chance ask your pulmonologist if there were any contraindications to taking the Wei herbs at the same time as ofev? Thanks

    • #27298
      John Weitner
      Participant

      No..I never ran anything I was taking with the pulmonologist.. They should have provided information about other useful things to take other than Ofev.  Doctors tend to push pharma meds and dismiss natural remedies.

       

    • #27302
      Carlo De Pellegrin
      Participant

      Traditional doctors won’t comment on naturopathic meds due to lack of empirical testing and even naturopathic doctors tend to have a group of meds they provide and stay with what they know. That is why it is so important that we share what ever little bit of information we can amongst ourselves.

    • #27309
      Manzurul Khan
      Participant

      I read all your posts with interest since I am also dabbling with the idea of experimenting with Wei Labs products. I was diagnosed with early stage IPF almost by accident in late October during a routine physical. I thought I was healthy since I lead an active lifestyle with regular jogging, brisk walks and tennis. When I was refereed to my pulmonologist, he said I had another 3-5 years life expectancy. He gave me a bunch of tests, and ordered CT scan, 6 minute walk test, breathing test, barium X-Ray for acid-reflux, endoscopy and sleep apnea. All came negative except my CT scan which showed some spots at the peripheral wall near my lower abdomen. A hiatal hernia was also detected which I got rid of with rigorous exercise on a trampoline. He also suggested that I start with either Esbriet or Ofev. With my curious mind and natural gravitation toward holistic medicine, I came across Wei Lab. I talked to Ryan who was confident that my IPF could be removed in as little as 3 months with the early detection. I was close to signing up, but I could not justify the price ($1000/month). Instead I use anti-inflammation food e.g mixture of ginger, lemon and honey, turmeric powder and cinnamon powder. I also drink green tea and take EGCG capsule each day. Has it made a difference? I don’t know yet. I will take another breath test soon. I take no medicine (no Esbriet or Ofev yet) and feel healthy. I exercise each day even in near freezing temperature, sleep well and work full-time. Is my doctor right that I have 3-5 years to live? I will find out in 3-5 years or before. In the meantime, I am trying to set up a meeting with Prof. Ivan Rosas at Baylor College of Medicine. I maintain a positive outlook and grateful each day for having lived another day. I am 67 years old now. I draw strength from reading all the post here. It has given me hope and belief that IPF is not a death sentence in 3-5 years.

      Thank y’all as they say here in Texas.

      • #30325
        Bev
        Participant

        Ryan should have given examples refreneces of people the herbs had helped for you to speak with. Not only that but everyone is different and for him to say 3 months would take care of it is was so wrong!

        • #30369
          Allan Byron
          Participant

          Hello,

          The 3 to 5 yes prognosis that they say is old info, long time ago. I was listening to a seminar by a pulmonologist and said that patient s  now can even live more than 10 years today. I think we all need PMA. Positive mental attitude

          Allan Byron

      • #30334
        jim nox
        Participant

        Howdy Mr. Kahn,

        Another Texan here (Houston and Bryan-College station areas). I am 84y/o with a now very advanced case of IPF, which has morphed into a heart condition known is PH (pulmonary hypertension) the later of which I expect to be the immediate cause of my demise.

        Seeing your note about your initial pulmonologist  severe diagnosis/prognosis with only one of many tests, scans, and other diagnostic tools showing any abnormality, leaves me a little suspicious that he/she was a bit anxious to get you onto hi-priced drugs OFEV/Esbrit. Unless you have had subsequent diagnostic tests to confirm IPF, I would suggest a second opinion.

        The hi-res CTscan should have shown clear structural signs of the development and existence of IPF and all stethescope exams should have revealed sounds of IPF (crackles and velcro tearing sounds). I am not a doc, but have a fairly long history of suffering from and reading about this family of diseases. My history is similar to yours, many years of jogging, physical activity and otherwise good cardio/vascular exercise before my diagnostic exams which revealed all of the above.

        I send best wishes that you have a good outcome.

        jimnox

         

        • #30438
          Manzurul Khan
          Participant

          Howdy Jim Nox,

          Sorry to hear your condition is now in an advanced stage. When were first diagnosed with this terrible disease which has no known cause or cure? You certainly have the right attitude in staying positive and sharing your thoughts on this board. I thank you for your uplifting words. I saw my doctor again yesterday. He ordered another CT scan and breathing test. I requested a referral to Baylor College of Medicine for a second opinion as you suggested. I had another X-Ray done last week. No change according to the radiologist but scan and PFT are better indicators. I am 68 now and will be happy to have another 10 years of quality life. If not, I will be quite satisfied with my time on Earth and be grateful for having lived the way I did and the freedom I enjoyed.

          Live well!

    • #27315
      Jill
      Participant

      I’ve been researching everywhere I can think of to answer the question of interactions between herbs, chinese and western, with ofev, and haven’t had a ton of success. The Wei inst herbs don’t seem to have a stellar reputation for effectiveness in the IPF community,  although if they were cheaper, we might try them. For now they’re on the list as a possibility for the future. What has gotten my attention more is PRM/Fei Fu Kang, which has been used for decades for lung conditions and has been studied a titch. I’ve emailed with the acupuncturist at Eagle Herbs, who sells the product, and while he can’t assure me there are no harmful interactions with ofev, what he said was somewhat positive and we might give them a try. They are much more affordable than the Wei Inst herbs, and have a long history in China of being used for, and helping, lung issues.

      We have always used herbs, chinese and western, and homeopathics, as well as diet, visualization, bodywork etc for our main healthcare, so we have a healthy respect for the power of plant medicine, and therefore understand the care that is needed when mixing medications. It’s clear we won’t get a totally reassuring answer from anyone about the possible risks of mixing herbs and ofev (I’ve askedthe IPF Face Book groups, this group, our pulmonologist, the specialty pharmacy, the ofev people, and am waiting to hear back from a local chinese herbalist) and there’s just not enough data out there to say for sure if these are safe combinations. My husband will just have to decide on the amount of risk he’s willing to take, and maybe that will include PRM/Fei Fu Kang at this point, and maybe not.  Everything in life is a cost-benefit analysis, and this is no different. Good luck to all of you working thru this decision!

      From a previous thread:

      Pulmonary rehabilitation mixture (PRM), a Chinese herbal medicine formula, has been used to treat pulmonary fibrosis for a decade.

      PRM is composed of eight herbs including Astragali Radix, Codonopsis Radix, Ophiopogonis Radix, Schisandrae Chinensis Fructus, Notoginseng Radix et Rhizoma, Fritillariae Thunbergii Bulbus, Anemarrhenae Rhizoma, and Glycyrrhizae Radix et Rhizoma. Astragali Radix, the monarch drug of PRM, is reported to possess several medicinal functions including antitumor, immunostimulating, and antiaging effects

      • #30326
        Bev
        Participant

        Jill

        Have you tried and who did you contact to purchase PRM.  WEI is way out of control with costs!

        Thank you

      • #30327
        Bev
        Participant

        Jill

        Have you tried and who did you contact to purchase PRM.  WEI is way out of control with costs!

        Thank you

      • #30359
        Bev
        Participant

        PRM how can they be contacted?  TY

    • #27332
      Denny
      Participant

      Just to let everyone know about WEI lab. It is a free phone call to get all the successful case studies from them and from the doctors that treat the patients. WEI has doctors and herbalists in all parts of the country that monitor the success from the herbs. They will send you several websites with different information from clients and doctors. No side effects from the herbs like Ofev and Esbriet. How much do you pay for Esbriet or Ofev. There are 3 people on this site that had success with the herbs that I talked to last year. It’s a free phone call to get the information. Also that statistics are 90% of people with IPF live 3-5 years (which is now 4-7 years) especially when detected early. 5% live less than 3 years and 5% live indefinitely.there are other people on this site that get laser treatment for the scarring and several that take serrapeptase for the scarring besides green tea extract. Call Frankie at WEI and she will send you everything you need.

      Denny

       

    • #30347
      Steve Dragoo
      Participant

      @samgilmore

      Hey Sam,

       

      There is another thread with some good info in it you might want to review. I forget the exact title and I started it.  I have taken WEI twice. The first time I need good improvement and stability actually took it 4 months but could have done just as well with 3.  The second time I was in a major battle/recovery from an acute exacerbation and it helped again but not as much probably due to how sich I was.  I started to order again for a discount of 3 month supply but have been trying a variety of supplements before I order again.

      I may order in another month or 2 as we get closer to us returning to the USA.  Hope you find the other thread and it can help you.  I am a little over 5 years into my IPF and at 72 who knows the future.

       

      Stay well,

      Steve

    • #30351
      Ben Robinson
      Participant

      I been on Wei for three months and like the others it is hard to say. It may have helped getting my inflammation down along with my prednisone bursts each month. Did you know that fibrosis is actually inflammation at first ?  There are transplant pushing Pulms that would disagree.  they also hate my pred 5 tablet bursts prednisone – why- the only thing that I know that works. 19 veggie capsules a day plus 6 CL for two months. A lot of capsules to choke down with my many other pills. I will let you know but it is hard to tell which is working  It’s my butt so I’m just throwing the kitchen sink at the PF. Hail Mary time.

    • #30402
      Jim
      Participant

      <p style=”text-align: center;”>I tried WEI for a 3 month trial. It is very expensive and my pulmonary numbers continued to decline while taking it. Hope this helps.</p>

      • #30426
        Carlo De Pellegrin
        Participant

        Hey Ben, I’m hesitant to try Wei because of the cost. What are the 19 veggie capsuls and the CL for two months?

        • #30428
          Bev
          Participant

          Until they bring back the liquid  of the Soup A AND B version you are wasting your money on the caspsules A & B soup and Clear Lung pills.. I tried and for me it did nothing maybe it would work for you but just a heads up

    • #30403
      Bev
      Participant

      Same here! Since they switched from the liquid version to capsules not worth taking!  All about $$$$ and no guarantees.

      I tried to get a refund but was told if anything was open ( duh) how else do we try it. So basically $189. And no good results.

    • #30415
      Ben Robinson
      Participant

      I think I need an exorcism   The thing has a soul. I feel like it might be contributing something to my general improvement. This stuff is all they had 1000 years ago.  I will post back after the holidays when I am done. Anybody know a good witch doctor.

      • #30422
        Steve Dragoo
        Participant

        @6yearvet

        Hey Ben,

        I have taken Wei twice and it helped both times. I may order again when I know I am coming stateside. I’m a vet too.

        BTW exorcism and witchcraft are diametrically opposed…

        Stay well – Steve

    • #30423
      Bev
      Participant

      Steve,How long ago had you ordered from them?

    • #30429
      Ben Robinson
      Participant

      That runs $1500 a month so it would be $3000 for two months of the soup a and b And that other one plus the CL or clear lung which $189.  $1312 plus the 189 is about right at 1500 per month to throw the kitchen sink at the disease. I think I am getting some benefit. I am on the Ofev too to hopefully slowdown the disease progression. Expensive but I have a good teleworking job and luckily can afford it.

    • #30430
      Nina Merendino
      Participant

      I just finished reading a lot I love PF patients Like myself and I’ve had similar experiences with different pulmonologists!I was diagnosed with all the fibrosis in 2018 after having a chest x-ray to see if I had pneumonia after I had two bouts. with bronchitis. The first one wanted me to have a long biopsy on the operating table which I did not want. I have no symptoms no cough no shortness of breath where they still want me to do it and I said no. Of course my CT scan shows honeycombing me both lungs fibroids they have discovered mold in my lungs from not changing my filter in my furnace and Ground glass as well as opacities. I decided to go to the University of Washington to the Director of the interstitial lung clinic, Who treated me like I was his new research specimen. I had a lung biopsy through my trachea, I had a wire put through my nose into my stomach to see if I had Gerd, which I do. He told me I had four or five years left to live and that was so depressing, like we are doing research and maybe will find a drug that cures this, and then again wanted me to do a biopsy on the operating table. Well my father was a thoracic surgeon and said whenever you get an operating table there’s a chance one could die. What I have done since 2018 is refinance my house and put in Swim Spa which is the best thing I’ve ever have done for myself. I work out aerobically every day for at least a half hour and also swim daily. Neither my CAT scan or my pulmonary testing has changed much. In fact my last pulmonary testing was better than my first pulmonary testing which was done in 2018. Now he wants me to come back in December and have another CT scan, another echocardiogram which showed my heart was fine and more pulmonary testing. He never once asked me what I did for a living I was feeling etc. so I decided I am changing to another pulmonologist. The Director of the University of Washington immediately pooh-poohed the use of WEI products.Whenever I have brought up any news that I have found on the site he also pooh-poohs that. So the week before I saw him two weeks ago I went to the new pulmonologist who said he couldn’t possibly tell me how long I had to live. I’ve got asked about the products from China or herbs but I am taking vitamin D now and I take the drug that was suggest that I can’t think of the name of it daily that has been shown to help. All I know right now is that I am very grateful to have found this site and I read it daily. When I would leave the Director of the interstitial lung clinic at the University of Washington I would cry most of the week. I even went to the store and got a pack of cigarettes LOL. So I am starting a new journey with a pulmonologist Who is very kind and compassionate and knowledgeable add took care of my sister-in-law until she died last year over 10 years with I believe COPD then pulmonary fibrosis and eventually pulmonary hypertension. Anyway I love all this news about what to try and I find it interesting that doctors nowadays push pharmaceuticals, they must have a lot of stock in them. Sincerely Nina He also said Wei Institute was a scam!

    • #30440
      Bev
      Participant

      Everyone is different Steve. If the capsules work for you and you can afford then definitely do what works.

      Good old Mullein tea and the extract works best for me than any Wei product.
      Wei soup A and B liquid was the only thing that worked for me.

      • #30447
        Steve Dragoo
        Participant

        @bat777

        Of course we are, Bev.  You should read some of the other forums regards how many times I have cautioned people when they take something new the impact it may or may not have.  That might help you, too.

        Stay well… Steve

    • #30512
      Ben Robinson
      Participant

      Wei only works if you take all those capsules every single day.  If you skip days or weeks it is not as effective at all. It is a lot of tablets to take every single day with no slack combined with your other medications on top of it. FYI

    • #30518
      Sylvio tabet
      Participant

      I did experienced it for three months I did not notice any difference
      Sylvio

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