• Posted by Zo Michael on September 5, 2023 at 7:15 pm

    Hello

    Has anyone tried Wei Institutes

    Supplements for PF?

    I have been told by a second opinion Dr. That I am advanced with my Ipf and my only recourse is Ofev.

    My pulmonologist of 8 years says it may or may not make a difference

    He says I just do not look or act what my CTs show.

    It was just called hypersensitivity pneumonitis for years. I was first diagnosed in 2015.

    I am trying Soup A, soup B and LC Enhancer.. I would love to know if anyone else had tried it and their experience.

    Thanks everyone,

    Zo from Virginia

    Ps. I look healthy but obviously am not. My oxygen levels drop pretty quickly with exertion. The heat has been difficult.

    boboko replied 1 month, 1 week ago 9 Members · 10 Replies
  • 10 Replies
  • Jan Cohen

    Member
    September 7, 2023 at 2:47 pm

    I have left my comments before about Wei products. I did the Soup A, Soup B and LC Enhancer for about 4 months (at outrageous prices) and never saw any difference in my condition. I’m on oxygen 24/7 and I think my lung condition is slightly worse. Now I’m using the AST Enzymes, but am not seeing any improvement there either. I do breathing exercises and take a large amount of supplements. I didn’t want to put up with all of the side effects of OFEV or Esbriet, so I’m not taking any drugs. At 90 I may have only a few years more with or without them. I’m willing to take my chances. I keep fairly active in the senior facility where I live and enjoy all the events that take place here.

  • joyous

    Member
    January 17, 2024 at 9:49 pm

    I have not tried Wei but other supplements. I am now 83 diagnosed through lung
    scans with IPF in 2017. Since then has been a rocky road. At first
    I was put on OFEV then Esbrient both of which I could not continue to
    take because of the side effects for me. Since nothing out there I
    utilized my training as a master herbalist and searched for
    supplements in herbs and homeopathy that would help with the
    coughing. For the Mucus coughing I utilize BHI Mucus. For the other
    coughs homeopathy Borion Drosera 30 that dissolves under the tongue
    and if really hard coughing use Dr.Christophers ANTSP an
    antispasmadic in a little water. . Went through lots of other
    products but settled on the Ridgecrest Clear Lungs Extra Strength
    and saw good benefits from it with very little progression until
    2022. I did not have Covid but shortly after taking the series of
    Covid vaccines it showed advancing in the lungs and I had to start
    using oxygen from a home concentrator at 2 leiters at first and for
    most of the year. I found that a lot of my hard coughing was caused
    because my oxygen had dropped in the 80”s . Now that it has
    advanced some more and am now on 3 ½ leiters or 4 depending on if I
    am walking or sitting. I have been quite mobile by utilizing the
    small 113 leiter tanks that could be carried in a purse or a satchel
    and last about 3 hours so could still attend church and other
    activities. Now that I utilize more oxygen I find it necessary to
    watch the gauge closer and take extra tanks for back up. I tried the
    portable concentrator but it was heavier then the small tanks and
    made too much noise in running and only had pulse not continuous feed.
    Also found out Medicare would not supplement the portable carry one
    and also needed tanks so just using the tanks. I came across research
    that was having good results with IPF utilizing Serracor-NK and
    and Serra RX from AST and Biomediclabs . I wish I had known about it
    when I was first diagnosed. I have been taking the therapeudic
    dosage for 5 weeks now so will take at least 10 weeks to see if it
    will help reduce the webbing in the lungs and give me better
    breathing ability. Also utilizing honey a teaspoon on waking and at
    bed time to see if it will help halt the mucus build up. Since
    nothing is out there to cure IPF I am for doing anything that would
    help with a better quality of life while LIVING with this disease.
    I will continue these supplements above I know this is a terminal
    disease and have a strong faith in the Lord Jesus knowing that each
    day is a blessing to breathe and get around. In this life we know we
    will have troubles but HE is there to lead us through and brings
    great peace to me on this journey. I am in hopes that something I
    have said in this post will help others as they take this venture
    living with IPF .

    • boboko

      Member
      October 29, 2024 at 10:43 pm

      Thanks for sharing your story. It’s good to hear what other people find helpful. We need to travel this road together.

  • Kim Morrison

    Member
    January 18, 2024 at 2:16 pm

    I spoke with them but it was too expensive for me. I’ve been taking Haritaki that I get on Amazon. It’s a natural substance and is considered the king of medicine in India. I have seen some improvement with my shortness of breath and my overall feeling. My last lung function test had improved.

    • Samona

      Member
      July 16, 2024 at 3:15 pm

      Hi -How long have you been taking the Haritaki Amazon supplements?

  • SallyB

    Member
    January 18, 2024 at 3:14 pm

    I have not tried those supplements, but I am concerned about your comment concerning Hypersensitivity Pneumonitis (HP). Were you diagnosed with it? I was diagnosed with HP via a lung biopsy about 3 years ago and started meds immediately, specifically immunosuppressants. Are you being treated for HP? Also, I am taking OFEV and am able to manage the side effects. I went to Mayo (Rochester MN) several months ago and they said that OFEV is likely responsible for halting my slow decline in lung function. I mention these things because if one is able to tolerate OFEV, I think it’s worth a try.

  • Lee

    Member
    January 18, 2024 at 6:23 pm

    I used the WEI soups and LC in the first year after diagnosis. After the first four weeks I noticed a “subjective” difference. Breathing felt easier. I was already on 3L/5L of oxygen. After 90 days I didn’t feel any more progress so I discontinued. I bought some of the herbs in the mixture such as Cordyceps and have continued to take them over the last two years. I also use Dr Paul Noble’s Zinc/ NAD+/Resveratrol protocol. It’s a low cost approach that uses widely available well known supplements and I’ve used that for 8 months now. My diagnosis was severed advanced IPF with less than 30% lung function. I’ve not taken any of the pharmaceutical anti fibrotics, but I follow a quality nutrition and basic supplement protocol, I do lung and breath training twice a day and I work out six days a week in the gym and walk four miles a day. I use supplement oxygen while exercising. I have improved my lung function over the last three years and have an excellent quality of life.

  • Zo Michael

    Member
    July 13, 2024 at 12:38 pm

    Thank you to all responses about Wei supplements. I so want to try an alternative but I do believe they are keeping me much better than without taking them…I tried weaning down to twice a day instead of three doses, then once a day! I have been on them a year! My husband is working another job to make the thousand dollar a month order so I deparately wanted to get off them if I could. When off, Within one week I was coughing much quicker and longer. Felt more fatigued and had my first experience of joint pain at night that woke me up.<div>

    I will be 75 in October, I have been on 24/7 oxygen for about 3-4 years. YES… I fought it.

    NOW it is 2 liters to sleep and up to 6 depending on my exercise. I cannot sit long, typing this is too long…haha! That is why I read posts and very seldom write them.

    Also, once I start writing it’s hard to stop. As you will see..

    I really want to check out Haritaki and few others mentioned.

    Truth is any meds are pretty scary, I have lost friends and relatives, seen them suffer from tradition meds and treatments…I do not trust everything I’m told.

    A little over a year ago, I went for a second opinion at Inova lung transplant center Fairfax, Va.They put me through my same yearly test I’ve had since 2017…LF test, CT Scan, blood work.

    Results were Ofev may or may not slow this down, ordered a higher home concentrator and said I was late stage.

    I really don’t believe it. When it’s bad it can be really tough but for the most part it’s a mainly the huge adjustment to just NOT being able to do everything you used to do without lots of effort or so much trouble YOU CHANGE THE PLAN

    I have been to pul/rehab two years and I do breathing exercises but it’s very difficult to take a deep breath without coughing which makes me frustrated.

    I really would like to try some ,different alternatives that would not be so expensive.

    I do not want to take Ofev or espberiet…sorry spelling incorrect.

    Actually detest big pharma medicine for ALMOST anything.

    Since 2017 my pulmonologist says I do not pre-sent what my CT scan shows. I still look healthy. He called it Hypersensitivity pneumonitis until 3-4 years ago then it became IDL…advanced PF

    I love reading this forum and also have learned SO MUCH about this very DIFFICULT disease to treat. My pulmonologist is very quiet and non committal about any of it. Through all the years that i was told it was Hypersensitivity pneumonitis, all that was offered was prednisone which made me feel fabulous until I started swelling up. I’m much to vain for that and think in some ways, it was a false feeling of well being. I stopped any prednisone step downs about 3 years ago. Now my Dr. just says ” so, how are YOU feeling?

    Sorry everyone for this ridiculously long text…God Bless and may you all carry on and mostly Laugh and Love

    …Alot!!

    </div>

  • Mario

    Member
    July 16, 2024 at 5:32 pm

    In my opinion there are supplements that will help without breaking the bank. Studies have been done that demonstrate that Metformin is an anti fibrotic. I take 500 mg per day and have since my diagnosis 5 years ago. I also take Quercetin, an Asian supplement that has also shown to be effective as an anti fibrotic. It was studied in China and Korea. Both have minimal side effects and are inexpensive. Good luck.

  • Zo Michael

    Member
    October 28, 2024 at 5:46 pm

    Thank you so much for your suggestions, I will check into them.

    Sorry I am just seeing your reply from July😯

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