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    • #11252

      Hello Forum Members,

      I know that the use of alternative and naturopathic medicine in the treatment of pulmonary fibrosis can be a topic that is easily disagreed upon by many. My intention for posting this article here is not to sway one’s thoughts or opinions, nor am I offering my own opinion of herbal remedies for PF. I just wanted to share this article, as it was recently published (2017) and shared with me by a naturopathic doctor. She just handed it to me and said for me to have a read, she wasn’t pressuring me on a pursuing this option. I was there to see her for an entirely different reason than my IPF. It seems credible though and I’d love to hear others’ opinions and thoughts on the article and/or their experiences with herbal remedies: what are your thoughts on it? Have you tried any herbal remedies that have been particularly helpful for you? Do you believe in this being beneficial in the treatment of pulmonary fibrosis?

      https://www.nature.com/articles/s41598-017-02774-1.pdf

      Just a disclaimer: please be mindful that differing opinions are likely to occur in response to this discussion topic and to be courteous of others in their thoughts and opinions. I look forward to hearing from everyone!

      Charlene

    • #15670
      Steve Dragoo
      Participant

      Hi Charlene,

      I read the PDF just now and curious if you found PRM or tried it?

      Hope you are surviving and thriving best you can…

      SteveD

    • #15701

      Good Morning Steve,

      Thanks for your reply! Glad you read the article, there is this one and another really helpful one on Chinese herbs as a natural remedy for IPF. I’ve finally found it, and you can access that article here.

      I haven’t tried PRM, I was considering it for awhile but it just kind of fell off my radar unfortunately. I could look into it again I suppose. I did get a mixture of the herbs mentioned in the article above from my acupuncture specialist, and have to admit I didn’t really notice any difference. That said, I only tried the sample she gave me so it wasn’t a lot, perhaps not even enough to make a difference? I just didn’t want to invest the money into more herbs at that time. What are your thoughts about the article above, Steve? Curious to hear from you 🙂

      I am doing well thanks, actually just returned home from vacation that was physically exhausting but so mentally and emotionally uplifting so I am really glad I went. I’ll be writing about it in some future forum posts, so definitely stay tuned.

      Charlene.

    • #15706
      Steve Dragoo
      Participant

      Hello There Charlene,

      Good to hear from you and I like the article a lot but have no real resource to find all of those herbs and don’t know who to trust about them.  My breathing difficulties have slightly increased so I started researching again “what’s out there” and appreciate your latest article.  I know very little about herbal remedies as they can be very complicated. I have a friend’s wife trying to locate the herb concoction mentioned in PRMas she is from S. Korea and has her PHD in nursing – she recently started a nursing college in Malaysia. Feifukang, also known as pulmonary rehabilitation mixture, comprises eight herbs including Astragalus membranaceus (Fisch) Bge., Codonopsis pilosula(Franch.) Nannf., Ophiopogon japonicusSchisandra chinensisPanax notoginseng(Burk.) F. H. Chen., Bulbus fritillariae thunbergiiRhizoma anemarrhenae, and Glycyrrhiza uralensis, which is designed by our group based on clinical practice and drug screening for several decades”.

      The Astragalus (mentioned above) I have been using a few months and recently increased dosage 3 pills 2x daily. Starting today I will begin using Serrapeptase as it is reported to reduce certain scar tissue by attacking a protein (caution read up carefully before trying as it can be dangerous). Considering I would like to spend a few decent years with my wife, I am more willing to try potential remedies with uncertain results, including clinical trials that start next year.

       

      As an aside and thinking of vacation we can all use, I may have some vouchers that help reduce costs at 400.000 hotels and I think they have food vouchers too. This group has a couple of different types and the other is specific to certain hotels in various place at a fraction of the total cost.  We plan on trying one on Phuket, Thailand sometime in spring 2019.  I can post more info sometime if you are ok with that.

      Stay safe and well as you can…

      SteveD

      • This reply was modified 2 years, 10 months ago by Charlene Marshall. Reason: formatting
      • #15750

        Hi Steve,

        Nice to hear from you as always, thanks for writing!

        I couldn’t agree more with you about the herbs: I believe they probably could have some benefit to us, or at the very least, not be harmful to us but I’m not sure who to trust when it comes to obtaining/trying them. There is so much out there on the market today that targets those of us with a fatal illness, because folks know we want to try everything we can to outlive this disease. Unfortunately, much of what is on the market isn’t credible information and I don’t want to be putting it in my body. That is really neat about your friend’s wife, what a helpful resource potentially! Do you mind keeping us posted on what she says about the herb concoction in the PRM article? What she mentioned sounds promising, although I do struggle with giving my body things that I can’t even pronounce the names of. Does anyone else feel this way?

        Good for you for being willing to try, I don’t think there is any harm in much of the natural remedies out there, or at least this is my hope. It is the drug trials with unknown side effects / long-term issues that scare me a little bit. A few folks have mentioned Serrapeptase, and some had some good results and some didn’t have any results. I also vaguely remember a conversation about Serrapeptase being one of those “scams” out there, targeting those of us with chronic illnesses, so please do be careful. I know you thoroughly research your options ahead of trying something new though, which is great. Keep us posted on any positive results you might feel you are experiencing, I know others, including myself would be interested in learning from you 🙂

        Sure, that would be great about posting any vouchers. Some folks may find them helpful if they plan to travel, which I hope to do more of in 2019. I know it is getting harder for me, but hopefully I can still go to a few different destinations next year. Have fun in Thailand, that would be an amazing adventure!

        Happy Holidays to you and yours Steve! Thanks for being part of our community 🙂
        Charlene.

    • #15763
      Steve Dragoo
      Participant

      Hi Charlene – glad to hear from you too.  It must take a lot of your time to monitor and post so much on PFNews and I am definitely finding this channel plus PFNews YouTube the place to go for current ideas, events, potential remedies on the horizon, friendships, and so very much more. I appreciate your efforts.

      I am willing to try anything within reason after investigating because this disease is progressing and I realize even though it was officially discovered in May 2018, I had clear symptoms in late 2016.

      Thanks for allowing me to start a new forum about travel – discounts.  I can always submit to you first and it will be a few days before I have this worked through.

      Hope you will be at peace and rest over the holidays gaining in strength from all you do.

      Stay healthy,

      SteveD

    • #15778

      Hi Steve,

      Thanks so much for your reply, and I hope today’s note finds you doing well!
      Yes, it sure does take a lot of time staying on top of posts, and replying to everyone, but it is so worth it. I really love this role, and all that I am learning plus making new friendships via this online platform so the amount of time it takes doesn’t really phase me. I feel very lucky to be in this role, and I am so glad you’re finding our forums, the PFNews site and our YouTube channel helpful! I’ll pass that onto my colleagues “behind the scenes” who work so hard to make these things available to folks 🙂

      Let me know if you do decide to try the WEI products. I am not opposed to it, but am a little worried about the cost factor, so I haven’t looked into any of them yet. Curious to hear if you do though.

      Looking forward to hearing more about the travel details – discounts, when you have some time. No rush at all, and sure if you want to send the information to me first to ensure it meets our policy of posting on the forums that works for me. I trust you though, so I am sure it’s fine and I don’t want to create any extra work for you. I just wrote out my “tentative” new years resolutions – I like to finalize these closer to the new year – and on that list is seeing as much of the world as I can in 2019!

      Cheers to you, hope you have a wonderful holiday season and looking forward to our continued friendship in the new year.

      Warm regards,
      Charlene.

    • #15792
      Steve Dragoo
      Participant

      Hi Charlene – yes travel can be invigorating and restoring as there are so many wondrous and beautiful things to see in this blue/green planet.  Essentially what I will post are free gift certificates and deep discounts to certain high-value travel destinations and many other places with discounts too – some including food!  But I am still looking this opportunity over and hope to decide on it in the next few days. I probably will send you information first so that the wording is ok.

      When you add in the possibility of Wei Institute and others (clinical trials, etc.), there is indeed increased hope.  So in that sense, it isn’t pricey if their remedies work but instead priceless. Previously I mentioned I just started taking an enzyme serrapeptase and it is showing me benefits already.  Mucous is down significantly in just a few days. I bought this on Amazon after doing some basic research.  There are several different potencies so I started with a 2/3 recommended/suggested dose but quickly started taking it every 16 hours instead of once per day. Here is that link:  https://www.amazon.com/gp/product/B0781BDYV2/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1

      Success to you and healing,

      SteveD

      • #15795

        Thanks so much for sharing Steve, and I look forward to hearing from you once you decide on the opportunity to post. I’ll support you either way, and if I can help “vet” anything ahead of going on the forum, please don’t hesitate to let me know.

        Really glad to hear the Serrapeptase is helping you and showing you benefits already, that is great news! I hope it continues for you and thanks for sharing the link with me.

        Happy holidays, enjoy your day!
        Charlene.

    • #15918
      Susan Becker
      Participant

      Thanks to you all for sharing this useful information.  I have had IPF for 2 1/2 years.  Recently I found information on one other herbal remedy I wanted to bring up for anyone’s comment.  It is called PMO14 and is a combination of 7 different herbs/plant species.

      It was referenced in the following article:
      https://www.nature.com/articles/s41598-018-35320-8
      The medicine is a product produced in South Korea.  I have no direct contact with them to date and truthfully would feel much safer with a contact or at least a recommendation from someone in the U.S.

      Several of you have brought to light different herbal options.  Certainly there must be a knowledgable person or a supplier in the U.S.   Interested in any thoughts or suggestions.

      The best to you all,

      Susan

       

      • This reply was modified 2 years, 9 months ago by Charlene Marshall. Reason: formatting
      • #15935

        Hi Susan,

        Thanks for sharing this and glad you were able to make a post to this thread without trouble 🙂

        Just for clarification, did you come across the herbal remedy/mix in the article Susan? I think that is what you meant but I just want to be sure. If so, I agree with you about ‘vetting’ it from someone first so we feel safer to use it. Do you have any medical professionals on your care team who might be able to ascertain more information about these herbs? Some western medicine folks will and others won’t, so just wondering if it is worth it for you to ask him/her? Is it just available for purchase online? Sorry for all the questions!

        Take care and thanks again for writing.
        Charlene.

    • #15920
      Steve Dragoo
      Participant

      Hi Susan – I have a friend who is S Korean and asked if she had any knowledge about the herb.  She was not able to find any – and if anyone could she would have. It will be in clinical trials in 2019 and hopefully prove useful and move ahead.  There are some herbs readily available that “MAY” help IPF but this is a very uncontrolled area making it difficult to determine viability sometimes. Western medicine does not provide much incite either.

      The go-to medicine and help seem to be Esbriet, Ofev, O2 therapy, CPAP for any apnea, pulmonary PT.  Personally, we can help ourselves through diet, exercise, water, and vitamins like D3/K2, E, C.  There are several items that help the heart like amla powder (Indian gooseberry), hibiscus tea, Co Q10, turmeric.  I personally start every morning with fresh squeezed lemon/lime in lots of hot water with a little honey.  Other supplements that have helped me some are astragalus and serrapeptase. Hope this will help you some. – SteveD

      • #15936

        Hi Steve,

        Good summary, thanks!

        Was your friend in South Korea able to confirm this herbal remedy/mix will be available for trials in 2019? I didn’t read the article yet, so apologies if the answer is in there, I just wasn’t sure. Tell me a little bit about the hot water, lemon/lime and honey mix you have in the morning… is this just as a supplement to tea, or does it address certain symptoms for you? Curious to hear 🙂

        Charlene.

    • #15942
      Steve Dragoo
      Participant

      Hi Charlene – The herbal blend is masked enough with I suppose a proprietary name so she could find nothing out.  The company has posted clinical trials but I forget if phase 2 or higher.  Seems PF News has a clinical trial page with lots of links.  I can try to find it again if you want.  I have reached out to 3 companies but only one responded with a generic answer.  I think this needs a doctors inquiry to help the patient get on a list.

      Sure please let me know your thoughts on the PDF and I will try to remember that I need to do the research I promised.

      Yes, I came back through the portals of time and found myself on the other side of 2019 but not until I had a good night’s sleep starting at 11 pm in 2018… SteveD

    • #15950

      Hi Steve,

      Thanks so much for following up with this and providing all the clarifications for us. I knew PF News has a clinical trial page, we have a lot of wonderful scientific writers for our site who come with an amazing blend of experience and education. I didn’t realize this remedy that Susan mentioned might be on there. Glad you’ve entered 2019 successfully, me too! 🙂

      Chat soon,
      Charlene.

    • #15953
      Susan Becker
      Participant

      Thanks Charlene and Steve,

      Great to have input from both of you.   The article on the herbal mix does not mention upcoming Clinical trials, but it is “oriented” toward a scientific review of the medication.

      I certainly agree that this is a grey area.  While I have no immediate medical team member who could assist, I am visiting Cleveland Clinic for an evaluation mid month and will certainly bring this up with the physician I see there.  Hopefully, something will turn up.

      Your thoughts on the article would be appreciated, as well.

      All the Best in 2019.

       

       

       

      • #15954

        Hi Susan,

        Thanks so much for your reply, I am really curious to keep a “pulse” on this as it falls into the eyes of medical professionals and researchers. Will you report back on anything informative that Cleveland shares when you bring it up? That is a great place to start! 🙂

        Thanks for your help and wishing you all the best!
        Charlene.

    • #16848
      ajd
      Participant

      There are many Chinese herbal formulas which have produced positive results for IPF in mice studies including but not limited to:

      PRM, also known as Fei-Fu-Kang
      Jinshui Huanxian formula (JHF)
      Xuebijing (XBJ)
      YKF Yangqing Kangxian Formula
      Buzhong Yiqi formula
      Yu Ping Feng formula
      PROLUNG
      PMO14 . PM014 is a novel herb extract derived from the herbal compound Chung-Sang-Bo-Ha-Tang (CSBHT).

      Is there any consensus which works best? I have been looking to try one but dont know where to start. My hospital, the Cleveland Clinic even has acupunturere and TCM prectitioners but aree not of great help in this area but I must say the pulmonary Dept is top notch.

      Thanks,
      Tony

    • #16855

      Hi Tony,

      Thanks for sharing this, I know others will find it informative! I don’t have much personal experience to share with you regarding Chinese herbal formulas, although my acupuncturist (I don’t see her regularly anymore) did give me a combination of herbs to try. She gave me just a sample, so likely not enough to notice a difference and unfortunately I didn’t circle back to her about ordering more. She tried to make the combination from this article…. not sure if this is helpful?

      Hopefully others can give you some insight into this and may have a better idea of which ones are most effective 🙂

      Take care,
      Charlene.

    • #16858
      ajd
      Participant

      I was asked about a source to buy tcm herbals.  I have purchased some of them from East Earth Trade Winds,  http://www.eastearthtrade.com/

      It turns out that mixing up this stuf into a liquid or suitable form to make tea from is not simple and you will probably need a lab or whats known as a compounding pharmacy to make what you need.  Naturally don’t take anything without approval of your doctor.  Keep in mind that the studies they do on mice do not prove the stuff works on people and the dose is certainly different from human dose.

      Best Wishes and good luck,

      Tony

      • #16883

        Thanks for sharing Tony, those are important reminders for sure!
        Did you find the herbs you bought helpful at all, or were you unable to consume them given how they need to be taken? Important to ask our doctors for sure, and remember the studies are done on mice yes. The article my acupuncturist gave me was really interesting, I just wasn’t completely convinced about it and at the time, didn’t have the money to invest in trying the herbs. Now I’m quite interested in alternative therapies posted to this forum…

        Thanks again for sharing!
        Charlene.

    • #16902
      ajd
      Participant

      Charlene,

      I purchased the herbs requred to make the PRM mxture but it is far too complicated for me to make the mxture itself.  I did not pay attention to it at first but upon closer inspection saw that it was not a simple matter of sticking some weeds in the blender then boiling them in water.

      As the instructions in the study stated it required “them being “…. mixed and then extracted twice in 50% ethanol for 24 h each time. Then the extracted solution was combined and evaporated to dryness under reduced pressure. Then, the crude extract was reconstituted with distilled water. The solution was then centrifuged at 3000 g for 15 min at 4 °C, and the supernatant was collected as PRM. The concentration of PRM was 0.5 g crude drug per milliliter. To control the quality of PRM, its fingerprint was prepared by high performance liquid chromatographic method (HPLC) at 254 nm and is shown in Fig. 1. The content of Calycosin, calycosin-7-O-glucoside, formononetin, ononin and mangiferin in PRM was quantitatively analyzed. The content was 124.4 µg/g of calycosin, 220.4 µg/g of calycosin-7-O-glucoside, 50.8 µg/g of formononetin, 173.6 µg/g of ononin, and 296.7 µg/g of mangiferin.”

      This is far beyond my knowledge or capabilities and I don’t have a centrifige laying around my place.  so I was not able to prepare the herbal mixture.  I thought I would simply walk into a compounding pharmacy here and have this done but I still have not found one suitable to do this work.

      Tony

      • This reply was modified 2 years, 8 months ago by Charlene Marshall. Reason: formatting
      • #16921

        Hi Tony,

        Thanks so much for reporting back, although sorry to hear of the complexity regarding the PRM mixture. I agree, sure sounds complicated. Do acupuncturists make up Chinese herbal mixtures, do you know? That might be a stupid question but they often provide the herbs so I wonder if a) they might have access to making mixtures, or b) know where to send you to get it made up? Not sure if this is worth a try, just something that came to mind.

        Goodluck in your search to get this done, and please report back if you’re successful and what you think of the PRM mixture. Thanks again for sharing and wishing you the very best!

        Charlene.

    • #17076
      Anonymous
      Inactive

      Thank you all for sharing your experiences. My father was diagnosed with IPF 3 and a half years back. His breathing is worsening and he is on very high doses of lots of medicines and these medicines are not working. We want to explore Chinese Herbs but I am not sure if they provide treatment for international patients via telecommunication. He is in India and cannot travel.

      I will appreciate your reply and I wish everyone all the best.

       

       

    • #17079
      Steve Dragoo
      Participant

      @Priyanks – I believe you may want to contact WEI Institute as they make a strong beneficial claim regarding their herbal soup.  I think some have used it with success and perhaps Charlene has some insight too @Charlene-Marshall

      Wei is expensive and that does not include getting it to India but they may have shipping methods to help you.  There are some supplements that help: A good B vitamin complex – emphasis complex, an enzyme serrapeptase which has some very beneficial uses on the body.  We have a Dr. Andy on various forums and he has used a class IV laser with a specific protocol over four years which has stopped IPF progression almost completely in his lungs.

      Hope these help you. – Steve

    • #17080
      Steve Dragoo
      Participant

      @Priyanka  – I believe you may want to contact WEI Institute as they make a strong beneficial claim regarding their herbal soup.  I think some have used it with success and perhaps Charlene has some insight too  @charlene-marshall.  Wei is expensive and that does not include getting it to India but they may have shipping methods to help you.  There are some supplements that help: A good B vitamin complex – emphasis complex, an enzyme serrapeptase which has some very beneficial uses on the body.  We have a Dr. Andy on various forums and he has used a class IV laser with a specific protocol over four years which has stopped IPF progression almost completely in his lungs.
      Hope these help you. – Steve

    • #17085
      Anonymous
      Inactive

      Steve thank you very much. I am calling WEI institute but  they say patient has to be in USA.  I am not sure if they custom make their medicines according to the patient or is it a standard medicine. I will look into class IV laser.

      Thank you.

      • #17093

        Hi Steve,

        Thanks so much for tagging me in the reply to @priyanka regarding Wei products. I haven’t tried them yet Priyanka, but I know  @denny-eliassen has and speaks volumes for them. I agree with Steve regarding the supplements you may be able to try, has your Dad tried any of those?

        Sorry to hear your contact with Wei mentioned the patient has to be in the US Priyanka. Are you also located in India? I ask because I wonder if you could have the products shipped to you (or an extended friend/family member) in the US and then you ship them over to India. Might this be an option? This might work if it is a standard medicine. Goodluck with finding the information about the class IV laser well. Let us know if you need help with a contact regarding this Priyanka, and we can do our best to help. Dr. Hall has been so kind in giving us connections on this site…

        Take care,
        Charlene.

    • #17133
      Anonymous
      Inactive

      Thank you Charlene. I am in Florida and I called up Wei Institute. There are product managers who were willing to find a doctor and sending medicines to India.

      It will be dispatched soon.

      Thank you for including Denny Eliassen and Steve.

       

      My dad is taking supplements but his oxygen levels are dipping.

      I will go through most of the information available on this forum.

       

      Thank you so much

       

      • #17159

        Hi Priyanka,

        I am so glad that Wei problem-solved with you a way to get the medicines to your Dad. That is excellent news, and I hope it helps him. Did you try the soups, or what was it you ordered for your Dad, if you don’t mind my asking? Will your Dad be able to get supplemental oxygen to prevent his levels from dipping too much?

        Sorry for all the questions, and I hope the forums continue to be of help for you and your Dad.

        Warm regards,
        Charlene.

      • #18896
        Raj
        Participant

        Hi Priyanka, Were you able to ship Wei herbals to India? My dad has been suffering from IPF for past 2 years and I would like to try Wei to see if that helps. Since it is very expensive I don’t want to ship it and later get stuck in customs. Any help would greatly appreciated.

        • #18897
          Anonymous
          Inactive

          Hello @raja-s-sthanu (Raj), yes it was shipped to India with additional $100 or little more via FedEx. It took 5 to 6 business days. It didn’t suit my dad because he is already taking lots and lots of medicines. But it is definitely worth a try and I believe in this. I hope your dad feels better.

          • This reply was modified 2 years, 5 months ago by Charlene Marshall. Reason: formatting & tagging
        • #18899
          Raj
          Participant

          Thanks for your response Priyanka. Glad to hear that it reached safely but sorry that it did not workout for your dad. My dad also takes a whole lot of medications, so keeping my fingers crossed!!

    • #17134
      Anonymous
      Inactive

      Most of the doctors have told us that the lung transplant will be the only option in coming time. My father is an Indian citizen, and without insurance this surgery in USA might cost a million dollars. We are ready to go to any extent to help him and give whatever it takes to reach that amount. But we don’t know which hospital or doctors we should look into.

       

      I’m very thankful for your generous support. And I’m very thankful for internet because of such forums.

      • #17135
        Steve Dragoo
        Participant

        @priyanka Hi – I highly recommend serrapeptase.  It has no side effects even at high doses but can act as a detox some.  It also is important to take it away from other meds and on an empty stomach.  B complex is another major strengthener both have given me significant improvement so much so that they are changing my O2 prescription today. I am not tired unless I overwork and I am increasing my time at the gym.  This response amazes me.  Adding laser therapy should make it even better. – Been twice already and feel more energetic for about a day.

        I have had IPF since at least early October 2016, also diabetic, almost 70, and overweight.  Also had a minor stroke 4 years ago and a flat pituitary at the same time which means I have little free hormones which should make me weak all the time.  This is why I am amazed – I do take a hormone replacement therapy which has provided decent results.

        Need info on serrapeptase?  Just ask

        Take care – Steve

        • #17163
          Anonymous
          Inactive

          Steve, thank you very much for sharing your experience. I am glad to know that these medicines are showing improvement. My dad is 70, slightly diabetic and overweight. Just because high dose of steroids causes hunger and leads to weight gain. Yes please, I do need info on serrapeptase. Its very kind of you to share ideas.

           

          Thank you Charlene for replying. I will start my research on transplant soon. I am still very hopeful that alternative medicine will work.

           

          I would also like to share my experience with Wei Institute. I called up doctors offices listed on wei website which further gave me the number of their representatives. The representatives were very helpful and willing to set up an appointment with a doctor/practitioner and dispatch medicines anywhere in the world.  A representative/product manager is the link between a doctor and a patient. It’s important to choose a doctor who is able to answer your questions and has knowledge of PF. The wei products I understand have set dosage but the duration and other things are decided by the practitioner.

          However, there were few doctors who refused to treat patient remotely ( I completely understand that) because of different laws of different states. Some doctors do not want to include wei representatives as well.

           

           

          I would be exploring this forum. Thank you everyone for your kind responses.

           

           

           

        • #17218

          Hi Priyanka,

          Thanks so much for the update on your Dad, and including your discussions/conversations with the Wei institute. I’m glad that they seem to be helpful in getting the medication to your Dad and having some correspondence with him regarding their products and how they might be helpful for PF. Is there any chance your Dad could travel to you in the US? He likely will have access to more treatment options here, especially if you’re considering transplant as his disease progresses.

          Regarding transplant, I know there is a lot of preparations ahead of being considered for the surgery. Your BMI (body mass index) has to be under a certain level, along with participating in various rehab programs. Hopefully this won’t be too daunting for you and your Dad…

          Let us know if he does try the Serrapeptase as Steve suggested, and if he seems to find it helpful. Glad you’ve found the forums and please feel free to reach out anytime.

          Regards,
          Charlene.

    • #17160

      Hi Steve,

      Thanks so much for replying to Priyanka regarding the Serrapeptase, I’m sure she will find it helpful if she gives it a try for her Dad. Its so nice to have people to be able to correspond with on the forums regarding these tough discussion topics…

      @priyanka: I actually live in Canada so I am not too sure which hospitals in the US do lung transplants. You can search the Pulmonary Fibrosis Foundation website though for more information on which hospitals are considered “centers of excellence” in pulmonary care, and start there? I’m sure there are some in Florida 🙂

      Really glad you’ve found our site too, and for the internet that connects us all together. Feel free to write anytime!
      Charlene.

      • #17170
        Steve Dragoo
        Participant

        @priyanka Hi – One of the greatest benefits of having this disease is Pulmonary Fibrosis News and the several robust forums. Sharing our experience helps us all.

        Again I want to stress how safe and good serrapeptase is with the mentioned cautions.  They are: do not take any other medications with it for at least 2 hours before and after.  I typically also wait 4 hours after a meal and at least an hour and a half before my next meal to take it. Currently, I take 80000 SU’s (not IU or mg but serrapeptase units) 3X daily and will increase 50% soon with  120000 SU 3X daily. I buy at Amazon and I read the reviews, questions, and quality of the product first.  – Encourage you to do the same. There are plenty of videos on YT but I tend to look for doctor’s opinions not so much at personal impressions – although some of those are good too.

        Also, suggest you look at K laser site to see if they have any recommendations close to your father. The longer you wait the less effective the laser is according to Dr. Hall. Not exactly sure what that means except the sooner the better.

        Finally B complex (link included) is very good for anyone but especially we that have IPF. This is what I use but you may find something better: https://www.amazon.com/gp/product/B008PQDCG0/ref=ppx_yo_dt_b_asin_title_o08_s00?ie=UTF8&psc=1 .

        Hope this helps you on your quest… – Steve

    • #17168
      Ruth Edwards
      Participant

      I have been taking Clear Lungs, a Chinese Herbal in capsule form for 3 months now and can’t say I’ve seen a difference.  Still hoping to hear about the laser treatments with the chiropractors.  Loved the 70% chocolate idea for dry cough.  Just so fantastic to see so many ideas being suggested for possible relief of all kinds of symptoms.  Hopefully, one day, an actual cure.

      • #17214
        Anonymous
        Inactive

        Steve, thank you very much for sharing the information and the links.  I have sent this information to my parents. My father is taking B complex and I will be exploring laser. Thank you for taking time out to share.

        Wish you and everyone better and better days.

         

        • #27999
          Rajesh Subramanian
          Participant

          @priyanka,

          Hope your father is doing better. My mother was diagnosed with IPF 2 years back and she is on Ofev. She is not able to manage the side effects of Ofev, especially Gastro issues. Have you tried WEI products for your father or any other alternative medicines? Can you please share your experience with alternative medicines, that would really be helpful for my mother’s treatment. Thanks.

          Rajesh.

        • #28001
          Anonymous
          Inactive

          Hello Rajesh, my father had gastro issues with Ofev as well. We used to give him Ofev as per his tolerance. He did not want to try alternative medicines with other medicines, so we never forced him to try WEI, although we bought WEI medicines for him.  I apologise I am not much help to you but if your mother can tolerate WEI, please go for it. You can try for somedays to see how it goes.  Anything which can slow or stop the progression of this disease is worth it. For us, there were not many options. It was adjusting dose of steroids and Ofev with many other meds to keep side effects in control. I will keep your mother’s health in my prayers. Kind Regards.

        • #28027
          Rajesh Subramanian
          Participant

          Priyanka, Thanks a lot for the information and the kind words. So you ordered the WEI products from USA and shipped to India? Do we need to buy Soup A and Soup B? Can you please advise on how to get them – online or need to call. I will also pray for your father, thanks.

          Rajesh.

        • #28028
          Anonymous
          Inactive

          Hi Rajesh,

          We shipped WEI products from USA  to India via Fedex.  I would suggest you to research and find out what meds would suit your mother. There are many Wei Practitioners and we consulted couple of them before buying the medicines.  I lost my Father last year due to this disease but his passing was peaceful. I wish you all the best. Thank you.

        • #28302
          Rajesh Subramanian
          Participant

          Hi Priyanka,

          Sorry to hear this. May your Father’s soul rest in peace.

          Thanks for the details.

          Rajesh.

      • #17219

        Hi Ruth,

        Thank you so much for getting in touch and contributing your experiences to this topic thread! I actually wrote about the Clear Lungs a few months back and wondered if anyone had tried it. I saw it only in liquid form at my local pharmacy but decided in the moment not to try it. Thanks for sharing your experience with it, although sorry to hear you aren’t finding it making much of a difference…

        Did you find a chiropractor near you administering the laser, Ruth? If not the ipfstudy.com has a link to Dr. Hall’s site where you can find a clinician in your area. Let us know if you want some help with this 🙂

        I also am so hopeful for a cure someday! I do believe researchers are getting close, I just am desperate for them to work as fast as possible for all of us. Take care and feel free to write anytime!

        Warm regards,
        Charlene.

    • #17171
      Steve Dragoo
      Participant

      @ruth Hi Ruth,

      The laser helps pretty fast – the sooner the better.  I tried clear lungs but only one bottle because I switched to astragalus first and added serrapeptase a few months ago, which I highly recommend and a good B complex.  Not convinced of the astragalus but with the serra, I think they are both a benefit.

      Hope this helps you… – Steve

    • #17192
      Ruth Edwards
      Participant

      Thanks Steve, I’m going to look into ordering serrapeptase

      Glad to try different suggestions and see if one helps me.

      • This reply was modified 2 years, 7 months ago by Ruth Edwards.
    • #17220

      Wonderful Ruth! I got mine on Amazon, wasn’t too expensive and of course delivered right to my door which is perfect for me. Goodluck, and let us know how you make out with it if you don’t mind? Thanks as always @steve-dragoo, for being so attentive and helpful to all the forum members. I so appreciate your contributions 🙂

      Charlene.

    • #30025
      Dave
      Participant

      hi Charlene: I’m new on here and was recently diagnosed with pulmonary fibrosis with secondary diagnosis of pulmonary hypertension. I’m inquiring if anyone has tried NAC supplement. (N-Acetyl L-Cysteine) to slow the progression of PF? Since diagnosis, I have changed my diet, lost 10 pounds and am waiting for appointment to meet with Pulmonary Fibrosis doctor  at Hershey Medical Center to discuss treatment options and possibly clinical trials. That appointment is in 6 weeks. I have a friend that has been taking NAC for PF  and just wanted to see if anyone had good/bad experience with this supplement. Thanks for any input anyone may have. Dave W

      • #30029
        Steve Dragoo
        Participant

        @masonryt

        Hey Dave,

        I’ve been taking NAC 600 MG once in the morning for about 9 months.  It has helped but I need to qualify that and anything I add is subjective.  I had an acute exacerbation a year ago that was extremely serious – still recovering.  I added or increased several other supplements that have helped sustain me.  Also, have other medical issues at 72 and know everyone is different. I try to research and update my knowledge every 6 months or so and feel safe with what I do.

        Spend a little time looking over these great forums and you will find a lot of good useful information.  Welcome into the PF family!

        Stay well,

        Steve

        • #30040
          Dave
          Participant

           

          Hi Steve: thanks for taking the time to respond to my inquiry about NAC. I have now started taking it 2 times a day. Hopefully this will help me also. I have been reading the PF forum since being diagnosed with Pulmonary Fibrosis. Is there any tips on questions I should ask when I meet with PF doctor next month? I’m thinking asking for a biopsy to confirm this diagnosis. Any suggestions you could help would be great. Thank you for your time and stay safe and well. Dave

        • #30041
          Steve Dragoo
          Participant

          @masonryt

          Hey Dave,

          With NAC be mindful of the daily dose, it varies on where you look but 1500mg daily is the max dosage and I think that might be too much so watch for any potential side effects.

          Ask to be on the lung transplant list and what that means, ask what clinical trials are available (there are several), ask for esbriet and omeprazole, ask for pulmonary physical therapy, ask if you have or might get PAH and what to do about it now. Also, ask for the doctor to clearly explain the oxygen tests they will run. These should get you some good answers.

          Stay well,

          Steve

      • #30049

        @masonryt

        Hi Dave,

        Thanks for joining the PF forums and sharing a bit of your story with us. I haven’t personally been on the NAC supplement for my IPF, but I do know others who have. Thanks @steve-dragoo for commenting and I’d love to hear from others who have personal experience with this. The weight loss, albeit not easy with IPF due the difficulty exercising, will likely be welcomed by your doctor as I know that can help the lungs too. Goodluck with your appointment in 6 weeks and if you think about it, please circle back and let us know how it goes. Welcome again to the forums!
        Char.

         

        • #30062
          Dave
          Participant

          Thanks Charlene for the welcome to forum. It’s interesting to read about people’s experiences with PF and learn we are not alone in this disease.  Many good ideas to think and enact on. Stay safe and well. Dave

    • #30042
      Dave
      Participant

      Hi Steve thanks for the heads up on the NAC supplement. Currently I am taking 600 mg 2 hours after breakfast and 600 mg 2 hours after dinner. I will taper it to 600 mg a day after 2 weeks. What does PAH mean? Thanks for the rest of the tips to ask doctor. I have an interview with Philadelphia Temple University lung transplant center in November. I was looking on this website for highly rated Pulmonary Fibrosis doctors and transplant centers in my area, but could not find the list. My area code is 17201. Any suggestions on where to find them on this website would be helpful. Thanks Steve for your help. Grateful Dave

       

      • #30046
        Steve Dragoo
        Participant

        @masonryt

        Hey Dave,

        PAH: Pulmonary Artery Hypertension is a common development for us.   I am in the Philippines and a veteran using that mediocre system so I have no real insight on private sector doctors but there is a top-rated lung hospital in Denver a Jewish hospital whose name I forget. Search it on google might help you.

         

        Stay well,

        Steve

    • #30047
      Dave
      Participant

      Thanks Steve, my secondary diagnosis was Pulmonary Hypertension so it appears I already have it. It was discovered when I had a heart catheterization in July.  The heart catheterization showed no blockage and that is why I followed up with Pulmonary Fibrosis/hypertension doctor. I had been sob since 2018, and CT scan of mild Fibrosis in lungs. My local Pulmonologist “watched” my PFT and CT scans for several years. My symptoms became much worse since receiving the Covid vaccine at end of March. Am now on oxygen at night and portable oxygen prn when active. No problem with sob when resting. Have been eating lung healthy foods, lost 10 pounds so far (goal is 30 pounds); got rid of all the feather pillows and duvet s in the house as I read that “feather duvet lungs” can also contribute to pulmonary fibrosis. Since doing these small changes, have noticed some improvement in my breathing. Hopefully the addition of the NAC will help also. Thanks for letting me vent and keep well and safe. Dave

      • #30060
        Steve Dragoo
        Participant

        Dave – diet is key and Omeprozale helps IPF as well because the theory goes ingested stomach gas may  – emphasis – increase some types of scar tissue, rather you have GERD or not. I don’t and it seems to help and every little bit helps.

        Stay well,

        Steve

    • #30061
      Dave
      Participant

      <p style=”text-align: left;”>Hi Steve thanks for the heads up on Omeprazole. I’m already taking Lansoprazole DR capsules 30 mg for GERD.  I think it’s similar to the Omeprazole you mentioned. I may inquire with the doctor about changing. Thanks for your help and stay safe. Dave</p>

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