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  • Metformin Useage as Treatment for IPF

    Posted by michael-lamkin on July 19, 2018 at 7:41 am

    I finally heard back from my doctor a few days ago after asking his opinion, based on the latest information available, if the VA (my medical provider) would provide Metformin for treatment of IPF. He responded that there was no evidence that Metformin was an effective treatment and therefore the VA would not prescribe or provide its usage. I have to admit I was disappointed by his response.  I’m considering using my private medical provider to get a second opinion.

    As a result I started using Esbriet this past Monday and so far the only side effect I noticed was after the first day of usage an upset stomach and stomach ache but luckily these symptoms only lasted a couple of days.

     

    kim-morrison replied 9 months ago 15 Members · 57 Replies
  • 57 Replies
  • steve-dragoo

    Member
    July 19, 2018 at 8:18 am

    Michael – there are a couple different herb formulas I’m trying that support and may even reverse (not clear)PF.  My PT is trying to get the full Metformin report but that could take a while, however it is/was lab induced fibrosis and lab controlled.  That alone leaves a lot to discover.  If you want more on these two herb supplements let me know. – Steve

    • julia-brandenburg

      Member
      July 20, 2018 at 9:30 am

      Hi Steve — I would love to hear about the two herb supplements that you are taking.  My husband, who has possible IPF, is currently taking broccoli sulforaphane but I have no idea if this is helpful or not.  After one year, there has been no progression in his disease and we do not have a definitive diagnosis of IPF.  Our French doctor wanted to do a biopsy but the American doctor indicated that if you have fibrosis, there is nothing to be gained by doing either a biopsy or the new less invasive Envisia test.  The American doctor prescribed Ofev but my husband will not start taking this drug until the two doctors can agree with a treatment course moving forward.  In the meantime, we did our annual physicals and my husband’s blood A1C level for type-2 diabetes was elevated and our general practitioner prescribed metformin.  Besides type-2 diabetes, metformin has been touted as a cure-all wonder drug for alzheimer’s, cancer, heart conditions and polycystic ovary syndrome.  Perhaps it can reverse pulmonary fibrosis but we will not know until we try it and metformin will help with the type-2 diabetes.  Also, the metformin is not contraindicated with Ofev so he can take them both once the two doctors agree on the treatment course.

      • Charlene Marshall

        Member
        July 21, 2018 at 9:04 am

        Hi Julia,

        Thanks so much for getting in touch with us, and just in case you didn’t get the notification, Steve shared all the supplements below. Hopefully this will be helpful for you and your husband 🙂

        I think he is wise about not starting OFEV  until the doctors both come to a consensus. Good for him! I hope the metformin works its wonders for your husband too Julia. Sending you best wishes, and please keep us posted on how things work out for you and your husband. We’ll be thinking of you!

        Kind regards,
        Charlene.

      • kim-morrison

        Member
        January 12, 2023 at 2:38 pm

        Julia

        I take Haritaki I get on Amazon

        University of Alabama did a study with mice and the Haritaki reversed the scar tissue I have been on it for a year and a half and feel a lot better. No oxygen rarely use rescue inhaler and my cough has diminished significantly. I have a CT in February and I will see if it has made a difference with the scarring

      • sam123

        Member
        June 3, 2023 at 9:54 am

        Hi Kim, Did you notice in the CT scan after using Haritaki for 1.5 years ? Hope you are doing better.

        I appreciate if you can update.

      • ali-yildirim

        Member
        June 28, 2023 at 12:59 pm

        hello kim,

         

        First of all, I would like to thank you for informing that haritaki is useful for ipf. After seeing your answer about it, I have been using a spoonful of haritaki powder every morning for about 1 month. When I searched, I found out that the Latin for it is Terminalia Chebula. When I couldn’t find a pill locally, I found the original seed from herbalists here and ground it into powder. but my herbalist suggested that I mix it with honey shortly after it is ground and then keep it sealed in a jar. This is because the oil of the ground seed is volatile. so I was able to preserve the freshly ground seed as original. so this is how I consume the original powder. but I haven’t seen any difference in cough and shortness of breath in this 1 month. In addition to the powder, I also use zinc supplements and Nifuroxazid.

        I found some resources about zinc and Nifuroxazid, but I couldn’t find a scientific resource about haritaki from the university of Alabama.

        Could you please share the link to the source you mentioned?
        thanks…

      • steve-dragoo

        Member
        June 6, 2023 at 10:40 pm

        @kimm34gmail-com

        Hi Kim,

        How much and what form of Haritaki are you taking? Please let me know how long you have had IPF and what age group you are in.

        I am 74 with IPF for 6.7 years.  Been taking metformin for diabetes for 12 years and have no insight if it helps or has slowed the progression of this lovely disease.

        Thanks!
        Stay well…
        Steve

      • kim-morrison

        Member
        June 7, 2023 at 12:59 am

        I buy haritaki from Amazon the brand is Cona Nature. I take two capsules every morning. I was diagnosed with PF December of 2019. I am 65 yrs old. My mom, her sister, and a cousin of mine all passed away from PF. I take ofev, zinc, Vit D, and Vit A.

      • steve-dragoo

        Member
        June 7, 2023 at 3:06 am

        @kimm34gmail-com

        Hi Kim,

        Thanks for the response.  I did see Haritake.  What dosage per day? The Cona Nature Organic recommends 3 pills per day and that would be 2250 mg.  Is that what you are taking?  How did your tests go last February?

        I served in cardiology in the USN (enlisted) and take a lot of supplements daily here in the Philippines.

        Thanks
        Stay well…
        Steve

      • kim-morrison

        Member
        June 7, 2023 at 9:08 am

        I started taking two in the morning and it seems to be helping with my symptoms and my last ct scan looked better. I will keep taking two and see what my next ct  scan shows. I feel so much better since starting it. I see my Dr in a few wee to go over my lung function test I feel like I did significantly better than the previous LF test. I will let you know what the Dr says

      • steve-dragoo

        Member
        June 7, 2023 at 9:10 pm

        @kimm34gmail-com

        That’s great Kim… I am ordering today as they ship to the Philippines many times for free.  Sure update us when after your next doctor talk…

        Stay well…
        Steve

      • kim-morrison

        Member
        June 7, 2023 at 9:44 pm

        You’re welcome. Praying for you! I pray you get good results!

      • dianaj

        Member
        July 6, 2022 at 10:38 am

        I hope it will help fibrosis.  I just know my mom was taking a whole lot of metformin and ended up with dementia.  I’m not saying it caused it, but it sure didn’t help her.

      • jeff-molloy

        Member
        January 10, 2023 at 9:54 am

        Hello Michael

        Could you please let me know the herbs you are using>

  • michael-lamkin

    Member
    July 19, 2018 at 9:13 am

    Steve,

    Yes, I’d like to have any information your doctor may provide related to supplements.  Thanks!

    Michael

    • denny-eliassen

      Member
      July 19, 2018 at 1:09 pm

      Steve,  are those supplements Chinese herbs? Can you tell me more about them. I have tried Chinese herbs and have improved my function test 3 times! Just curious which ones that you are talking about.

      Denny

      • Charlene Marshall

        Member
        July 19, 2018 at 1:50 pm

        Hi Denny, Steve and Michael,

        Great information sharing here – I am also curious about the use of Chinese herbs as it pertains to patients with PF/IPF. I was skeptical about it at first, until a naturopath doctor that my friend sees gave her this article to share with me: https://www.acupuncturetoday.com/mpacms/at/article.php?id=33106

        This article originated in the CHEST Journal and Acupuncture Today so I do have high hopes about its credible sourcing. Just some light reading for you if the topic of IPF/PF and Chinese herbs are of interest to you!

        Glad your function test(s) have been improved Denny, that is great news and I will continue to pray that it does. Thanks in advance for any sharing of these herbs Steve!

        Kindest regards,
        Charlene.

      • michelle-lantis-harms

        Member
        August 12, 2018 at 3:44 pm

        I just read the article you posted and I am wanting to see if there is anyone anywhere near me that I can get in contact with. I have started researching holistic medicine for IPF. I found an article on yoga breathing that I have started trying to do. If I can find it, I will post it. I have been diagnosed Type II Diabetic for the past 10 years and have been on metformin since diagnosis. I wonder if that is why my IPF has remained stable to date.

      • Charlene Marshall

        Member
        August 13, 2018 at 7:35 pm

        Hi Michelle,

        Thanks so much for writing, and glad you found the article I posted helpful. I wasn’t sure about the impact of holistic or natural medicine options for IPF (although I believe they do have a place in the overall gamet of medicine and treatment options for various diseases) but I was encouraged when I read this article. I’m not sure where you reside, are you in the US? The acupuncturist who gave me this article actually lives in Canada but if you let me know where you’re near in the US, I can email her and see if she has any contacts near you? You could google holistic or natural medicine treatment facilities near you as well, as a start?

        So glad to hear your IPF has remained stable, this is excellent news! There is still a lot of work being done about Metformin and its impact on IPF, and someone actually just said the gains they were making on the link between the two was discredited a week or so ago, but I don’t know where that information came from. If we find anymore helpful information, I’ll be sure to post it for sure! 🙂

        Goodluck and I look forward to continuing to get to know you via the forums.
        Cheers,
        Charlene.

      • dianaj

        Member
        September 3, 2022 at 8:40 am

        If you have had success with your herbs, could you post those?

  • Charlene Marshall

    Member
    July 19, 2018 at 1:45 pm

    Hi Michael,

    Thank you so much for getting in touch with us and sharing your doctors feedback on this very important topic to many of us! I know metformin is an FDA-approved drug for other uses, so it makes us hopeful as patients with IPF for it to be just as effective in our own diseases. Unfortunately, your doctors feedback on the lack of evidence seems consistent with others’ I’ve heard from who asked their doctors about it. Right now the experiments (to my knowledge) have been only conducted on mice, and while our brain anatomy is very similar (per a seminar I was in with a neurologist this past week) there is no evidence to suggest it will have the same effect on humans. I’m not saying it wouldn’t either, just that the “jury” and evidence is lacking right now on it, although I am so eager for more research to be done as this gives me a lot of hope as a patient with IPF as well! I’m sorry his response wasn’t more aligned with what you hoped to hear.

    I hope the symptoms of starting Esbriet have continued to be minimal for you Michael, and that they have subsided a bit? There are lots of members of our forum who are on Esbriet and can share their tips/experiences with you if not.

    Wishing you well and I look forward to continuing to get to know you though the forums.

    Kind regards,
    Charlene.

  • cooper-p-abrams-iii

    Member
    July 19, 2018 at 8:56 pm

    Steve,

    Would you post the herbs you mentioned? Certain would like to know. I am taking grape seed and fax seed extract. Hard to know but I think I am better.
    Have you heard of anyone getting over the shortness of breath with activity?
    Hope you are doing well.

    • Charlene Marshall

      Member
      July 20, 2018 at 8:40 am

      Hi Cooper,

      Thanks for getting in touch with us, and I hope you’ve been doing well. I wondered how you were just last week, so I am glad you re-connected with us on the forums!

      Thanks for sharing your experience of herbs and natural remedies for your PF symptoms. You said you do think you are better? That is good to hear. By this, do you mean that your symptoms are reduced overall, or are you noticing a specific thing that feels better since taking these supplements? How did you know to take these specific ones? Sorry for all the questions – just asking out of curiosity of course 🙂

      Take care and I look forward to hearing back from you.
      Charlene.

  • jacelyn-emily-peabody

    Member
    July 20, 2018 at 8:23 am

    Hi all,

    I am not a PF patient, but I am a MD/PhD trainee who studies mechanisms of disease and novel therapeutics in animal models of PF. The senior author on the Nature Medicine paper that demonstrated that Metformin reverses established lung fibrosis in a bleomycin mouse model is on my thesis committee and a close mentor. We are currently working on a retrospective study to see if there were any clinical benefits for ILD patients who were concurrently taking Metformin (for other indications) compared to ILD patients who were not. There will be a Phase II prospective study coming soon to test Metformin in ILD patients as well. I was not involved in the mouse study, but I am an IPF scientist and can help translate the findings. I am happy to answer any of the technical questions any of you may have regarding the study :).

    • Charlene Marshall

      Member
      July 20, 2018 at 8:44 am

      Hi Jacelyn,

      Thank you so much for joining our forums and for getting in touch with us via this thread. We’re very grateful you’re here!

      I know many patients on our forums have been seeking out more information since the Metformin study was released, and for some of us (like me), deciphering the information can be a bit overwhelming. We would welcome any type of translation of the findings from you, but I’ll let folks ask their specific questions to you. 🙂

      I know that studies and their subsequent results can take a long time to publish, but having an FDA-approved drug (ie. Metformin) show even possible lung fibrosis reversal is really exciting for those of us living with IPF. It is generating a lot of hope for patients, so thank you for what you and your mentor are doing. We look forward to hearing more from you, and so appreciate you joining our forums!

      If any of us can ever help you in your work, please don’t hesitate to reach out.

      Kind regards,
      Charlene.

    • michelle-lantis-harms

      Member
      August 12, 2018 at 3:48 pm

      As a type II diabetic, I am very interested in your study. I have been on metformin for over 10 years now and was diagnosed with IPF a year ago. They went back at least 4 years on CT Scans for kidney stones, and determined that I am stable at this time. Very excited to see what you determine. Please keep us posted and feel free to ask if I can be of any assistance.

      • Charlene Marshall

        Member
        August 13, 2018 at 7:36 pm

        Thanks Michelle, hopefully @Jacelyn sees this! 🙂
        You can also use the private message feature on our forums to connect with her directly as a member of the team who produced these study results. Just an option if you’re hoping to get in touch with her.

        Take care,
        Charlene.

      • dianaj

        Member
        September 3, 2022 at 8:39 am

        But if you have been on Metformin for ten years and recently developed IPF, then that is discouraging news.  The tests showed that it could potential prevent and reverse.  In your case it did not prevent it.  They also say it can prevent dementia, yet my mother who took Metformin for years ended up with dementia.

  • michael-lamkin

    Member
    July 20, 2018 at 8:51 am

    Hi all and thanks for the info. regarding herbs etc.  I, like most of you I’m sure, really appreciate any additional information I can get regarding IPF. I’ve been on Esbriet for only 5 days taking one pill three times daily. Next week I’ll start on two pills three times a day and then three pills three times a day. I guess I won’t really know what the side effects are until I’ve used for a month or so. I’m scheduled for blood work after a months usage to check my liver and then every month for the next six months. I’ll be sure to keep in touch regarding my experiences, whether positive or negative.

    • Charlene Marshall

      Member
      July 21, 2018 at 8:12 am

      Hi Michael,

      Thanks for getting in touch and sharing your experience with Esbriet so far. I forget if I shared this forum with you yet, but we do have a full forum on Esbriet and folks’ experience with it. If you’re interested, you can find it here: https://pulmonaryfibrosisnews.com/forums/forums/forum/esbriet-pirfenidone/ Lots of good information!

      I hope it continues to go well for you, and that your experience with Esbriet is positive. I’m also glad to hear your doctor has been proactive in ordering bloodwork to monitor your liver functions.

      I hope you continue to do well, and please do let us know how you make out with the increasing dosage of Esbriet, and whether or not you feel it helps you.

      Kind regards,
      Charlene.

  • cooper-p-abrams-iii

    Member
    July 20, 2018 at 9:27 am

    Charlene,
    Thank you for you work on this forum. As to my use of grape seed and flax seed extract, I think I feel some better. I feel I have a little more energy and mind is clearer. I have not been taking this long but so far all is positive. I will post again in a few weeks and let you all know if it is really helping. Both are suppose to be antioxidants. Had CT scan yesterdsy and will get the results on Monday. Well wishes to all.

    • Charlene Marshall

      Member
      July 21, 2018 at 8:16 am

      Thanks so much for your reply, and getting back in touch Cooper. I so appreciate hearing from you! 🙂

      So glad to hear that you think these antioxidants are helpful for you. I’m curious how you knew to start taking them, did you read about them online or did someone suggest these specific ones for you? Even a clearer mind and having more energy would be a bonus for me these days, so I am glad they seem to be helping you!

      Positive wishes for a good CT scan result, and thanks again for sharing!
      Charlene.

  • steve-dragoo

    Member
    July 20, 2018 at 11:03 am

    Hello to all,

    Several have asked me what I am taking.  I will post below but I just started both supplements less than 10 days ago.  My IPF seems slow growth and sometimes I have a good diet other times not at all.  So at 69 I do take several supplements that I have researched over the years several times.  Rather they help IPF or not I cannot say but they generally help my BP, BS, endurance, brain function, and more.  I will list those below also.

    Since being diagnosed 2 months ago, I have looked a lot at video’s about lung help/cleanse and I will post the one that is easiest for anyone to do below. It is turmeric, real raw honey, and fresh ground pepper.

    Somewhere on the internet there are several lists of optimal foods for the lungs all of us could use.  Additionally it is important our magnesium and D3 levels are average or above – according to several I have talked to regards immune defense. Next blood test you do ask for those to be added.

    Regards Metformin, I hope my PT will be able to get the white paper soon but all drugs – ALL – have side effects.  Food is for living people, drugs are for dying people says a doctor friend of mine.  With that said I do take a small dose of Metformin being diabetic but diet is a much better long term course.

    This is not a recommendation to anyone and I am 6′ tall at 230 lbs, 69 years old. Ok I take: Alpha Lipoic Acid 300 mg daily (Time Release – important or it’s a waste), D3 2000 IU – it is important to take K2 with D3, – I take 200 mcg daily, Co Q10 hi absorption 200 mg, Vit A 5000 IU, Vit E 400 IU (d-alpha tocopherol) Ginko Biloba 120 mg (just started again after 20 year absence).

    The 2 Chinese supplements are Astragalus 2000 mg (can take more safely but I cannot advise how much, also one brief I read implies it is mildly successful in reversing IPF – unverified), and something called Clear Lung extra strength (the strength amount per pill is a little confusing but I take 3 – 5 of these daily).

    Lastly, I just started a few essential oils in a diffuser and will need to experiment to figure it out.  One expensive EO (I did not get yet) has a couple recommendations (unverified) specific to IPF but EO is unregulated and purity is always suspect.

    Here are the links I mentioned (I am not an affiliate of any of these): Turmeric/honey – https://www.youtube.com/watch?v=KnCDzAHtjAM 

    Astragalus: https://www.amazon.com/gp/product/B075VCD82Y/ref=oh_aui_detailpage_o03_s00?ie=UTF8&psc=1

    Clear Lung:  https://www.amazon.com/gp/product/B0016AV5IE/ref=oh_aui_detailpage_o06_s00?ie=UTF8&th=1

    Input definitely welcome…

    Steve

    • Charlene Marshall

      Member
      July 21, 2018 at 8:33 am

      Hi Steve,

      Wow, thank you for such a thorough response to all of us regarding the supplements. You are very clear that you aren’t endorsing any of these, and that you are sharing purely based on your experience which I think is also important for people to note. Did you experience any unpleasant side effects at all since starting these supplements 10 days ago?

      I still need to try the lung cleanse you mentioned with tumeric. The other day I had a tumeric latte and I ended up in conversation with the barista how good this is for you, especially since it was “sweetened” only with raw honey. I think I’d enjoy the cleanse you mentioned, and will watch the video you linked to it below as well. While I was attending a conference this past week, I did some work with Peter Marks on mindfulness and the biomedical links it has to our overall health. The reason I mention this is because he also commented on how important magnesium is for us, so I’m glad you mentioned that supplement as being important and one that you take. I take it also.

      Please do let us know what your PT comes back with regarding Metformin. I have a family member on this drug and you’re right – it does have unpleasant side effects, pretty significant ones. Although if proven effective against IPF, I would imagine the side effects of Metformin would be gladly tolerated by others with proven effects against IPF. Thanks in advance for sharing anything you find!

      Thanks again Steve for outlining what the supplements you take are, I know many others were curious in learning about this so I appreciate it. I think I’ll look more into the Clear Lung as well!

      Take care and I look forward to continued dialogue(s) with you!
      Charlene.

  • steve-dragoo

    Member
    July 20, 2018 at 11:15 am

    Hi Cooper – I love fresh ground flax seed and use it almost daily on fresh fruit and a “healthy” pancake recipe I do.  If you are taking grape seed oil because of its pycnogenol, I think the maritime pine tree bark may be a stronger form, at least it used to be when I was taking it over 20 years ago.  I may well start the pine bark again there seems to be a lot of history even from native americans.

    I am not sure of getting over shortness of breath except strength training with a pulmonary PT and lung breathing exercises, increasing magnesium with green smoothies and D3 combined with K2 I mentioned above may help some too.

    Success to you…

    Steve

    • Charlene Marshall

      Member
      July 21, 2018 at 8:36 am

      Cooper and Steve,

       

      Just a quick FYI: my pulmonary rehabilitation program (PR) really helped with my breathing and reducing shortness of breath episodes. I still had them, but PR gave me the tools to address the shortness of breath faster and alleviate it more than I did before. If you can get involved in one of the programs, it might help Cooper 🙂

      Cheers,
      Charlene

  • cooper-p-abrams-iii

    Member
    July 20, 2018 at 11:19 am

    This is follow up on what I posted esriler today. Dr. called and said my CT scan showed no change since December. That is seven months of no additional scaring!!
    By the way. both grape seed extract and flaw seed oil are reported as good for IPF. I an a little encouraged.
    I asked my pulomonologist about metformin. She said she was looking into it and said she found a couple of studies on it. She is from the University of Utah. Take care.

    • Charlene Marshall

      Member
      July 21, 2018 at 8:42 am

      Cooper, that is wonderful news! 7 months of no additional scarring is so good, wow! You must be thrilled?

      Do you buy the grape seed extract and flax seed oil online, or at a local supplements store? I may look into some online options for it. Glad you’re feeling encouraged 🙂

      Great news about the metformin studies – if she shares them with you, please let us know. Also a wonderful MD trainee/PhD student just joined our forums (see above) who can share a bit more about the study just released too, as her mentor is one of the clinicians who published the study. Great things all around!

      Cheers,
      Charlene.

  • cooper-p-abrams-iii

    Member
    July 21, 2018 at 9:56 am

    Hi Charline,
    I purchased both from Amazon. I chose
    The ones with the best reviews. You might like others but am taking Zazzee grade seed extract (400mg ) and ground flax seed made by Viva (organic). The flax seed oil is made by Optimum (1000 mg).

    • Charlene Marshall

      Member
      July 21, 2018 at 6:04 pm

      Hi Cooper,

      Thanks for getting back in touch and letting me know you purchased them from Amazon. I’m going to do some exploring on there now, as I don’t live super close to a health foods store and having something delivered right to my door is appealing these days. I’ll take a look – thanks for sharing which ones you chose! I actually love ground flaxseed in different recipes (ie. muffins) so I should definitely order some 🙂

      Thanks!
      Charlene.

  • steve-dragoo

    Member
    July 21, 2018 at 3:53 pm

    Hi Charlene,

    Thanks for you kind words and the pulmonary respiratory PT idea.  The same doctor friend that said pills are for dying people; food is for living people also practices one great breathing exercise when he walks.  Slowly he built up to 6 or 8 steps (I forget exact number but maybe 8) inhale; 8 steps exhale – compared to our average 2 steps each.  Which brings me to magnesium. It is one substance that is a lot better to take as a whole food or smoothie as opposed to a supplement. Don’t know why just know a couple homeopaths that state that.

    Regards my regimen I am saying I don’t know what I don’t know (think Johari WIndow) so I am doubly cautious about recommendations because for some their condition is frail and things may not be tolerated well.  Also there are certainly other potential lung cleanse/supplements to be discovered. So far I can sense no side effects or improvement from the 2 lung supplements but I can update you in a couple more weeks. I would count it a victory if my symptoms hold instead of getting worse.

    I sure will give all any info I get from my PT next week if she has reviewed the report about Metformin.

    Kind regards all – SteveD

    • Charlene Marshall

      Member
      July 21, 2018 at 6:11 pm

      Hi Steve,

      Thanks so much for getting back in touch with me. Your doctor friend sounds very wise – glad you have him in your corner of support 🙂

      When I was doing this mindfulness training last week, I also learnt the importance of a shorter inhale, longer exhale. It sounded odd at first because I thought ‘how can you have a longer exhale if you don’t fill your lungs with a long inhale’, but once Peter Marks explained it, I understood a bit better. Apparently inhalation activates your sympathetic nervous system (ie.  “fight or flight” = bad) and exhalation activates your parasympathetic nervous system (“rest and digest” = good). So when you’re consciously mindful, a shorter inhalation and longer exhalation further activates the good parts of the nervous system. I wonder if this aligns at all with what your friend is doing? Maybe not because I know he is doing a longer inhale and exhale, which can’t be bad for you either .. I just thought this learning of the ‘mindful breathing’ Peter mentioned was interesting, and was good to subdue our sympathetic nervous system just by adjusting the way we breathe.

      Thanks for sharing the information about the magnesium as well. I am still looking into purchasing some, so maybe in the form of powder for a smoothie would be good. Not sure if it comes in this form, I’ll look it up. I am preferring to eat more smoothies/drinks right now than anything else…

      Agree with you completely re: the being cautious about recommendations, which is why I think it was a good idea for you to state that you were taking things based on your own experience, not recommending them to others. Kudos to you for sharing that! Hope you get your victory of symptoms holding instead of progressing 🙂

      Cheers, and thanks for such a thorough and kind response for myself and other forum members!

      Charlene.

  • steve-dragoo

    Member
    July 21, 2018 at 8:07 pm

    Hi Charlene – My friend is a missionary in Australia now.  I returned from 2 years in the Philippines a few months ago. As I think about it he may have taught the breathing principles you mentioned – don’t fully remember. He had an attractive orthopedic practice but realized the medicine was not as helpful as food.  So magnesium is best in food not powder or supplements there are some problems with those.  Here is a brief list:  https://simplyhealth.io/21-foods-high-magnesium/?utm_source=%2Bfoods%20%2Bhigh%20%2Bmagnesium&utm_medium=magnesiumfoodshighin&utm_campaign=adw_us&gclid=CjwKCAjws8vaBRBFEiwAQfhs-MzQAGgbbb07CrrTyZA994NnppRzxSjZyuSH7tvTnuNIfJQjEsb_4xoCC7UQAvD_BwE

    Hope that helps… – SteveD

  • Charlene Marshall

    Member
    July 23, 2018 at 8:36 am

    Hi Steve,

    Thanks so much for getting in touch, and I hope you had a great weekend. Your friends’ experience sounds super cool, and my guess is that some of his teachings likely intertwined with the work of Peter Marks as well. Sounds as though their interests and knowledge base would be similar for sure! That link definitely helps clarify – I had a skim through it when you originally sent it and am now going to read through it more thoroughly. Thanks again!

    Cheers,
    Charlene.

  • steve-dragoo

    Member
    July 23, 2018 at 8:58 am

    Hi Charlene,

    Not sure if their paths ever crossed but probably not.  Our church has the health message and we reach many people world wide with it.  The US government has studied us twice, most recently in 2002 for a an extended period.  There overarching question to answer was determine why Seventh Day-Adventists live 10 years longer on average than the general population. It is our health message and Spiritual walk… – Steve

    • Charlene Marshall

      Member
      July 27, 2018 at 8:45 am

      Hey Steve,

      Thanks so much for your replies, and so sorry about the delay in getting back to you. Had a tough few days, keeping me offline for quite a bit but thankfully am on the mend now! How has your week been?

      So interesting about the health message and spiritual walk. You’re right, likely the people we’re talking about haven’t crossed paths in person or in their work journeys, although it is interesting how their messages kind of compliment one another. I saw your post on my column back to Nick Hill, MD and hope it helps western medicine folks understand the importance of holistic or natural supplements, in addition to western medicine. Thanks for sharing that!

      I don’t have too many specifics on breathing techniques, mostly the ones relatively well-known like pursed lip breathing, shorter inhalation with a longer exhalation (more so to naturally ‘cleanse’ your body, activating the parasympathetic system) etc. Are those what you mean?

      Thanks again for getting in touch and I hope you’re keeping well 🙂
      Charlene.

  • steve-dragoo

    Member
    July 24, 2018 at 9:21 am

    Hi Charlene – I would certainly appreciate anything else you can share about your breathing exercises.  My PT is looking at some but doesn’t seem to have the experience you have mentioned before. I will ask again Thursday if she was able to obtain the metformin report but I do not thing it will shed any light or have any recommendations.   Certainly input is welcome from all.  – SteveD

  • steve-dragoo

    Member
    July 27, 2018 at 8:56 am

    Hi Charlene,

    Very sorry to hear of you being absent a few days.  This is not an easy disease.  I had a decent week in spite of loosing my job because I cannot work the hours and they would not offer an accommodation. The hardest thing I am dealing with is being away from my wife for four months as of today.  Very thankful we have Skype or Facebook.

    Thanks too for the breathing insights. I did find a website that has four suggestions.  Tell me where to provide that link if you want it posted soewhere.

    Thinking of websites, I tried a couple times to cut and paste 2 smoothie recipes I copied from the Web but kept getting what looked like html code mixed in.  Any ideas on that one?

    Do hope you have a peaceful restful weekend. – SteveD

    • Charlene Marshall

      Member
      July 27, 2018 at 9:11 am

      Hi Steve,

      Thanks so much for your kind words. I am definitely on the mend now, but you’re right, this certainly is not an easy disease to contend with!

      I’m so very sorry to hear about the loss of your job, how awful for you. Do your doctors still permit you to be working, and would they provide a note stating so? If that is the case, I don’t think an employer can barr you from working and have to make accommodations for you, don’t they? I could be wrong but I thought that is how it worked. That is of course, if you still feel like you can and/or want to work. I’m worried personally that I am approaching the point of just not wanting to work/not caring about work anymore, despite loving my career. It’s hard to care about something that can be so mundane when you’re just trying hard to survive and stay well. I can also imagine how much more difficult this is with being apart from your wife for so long. When will you two be back together? Skype and Facebook at definitely good to have, although I know they don’t compare to being together in person.

      Sure, if you wanted to post that link or even send it to me in a private message and I can post it too (giving credit to yourself of course!), whatever is easiest for you. I look forward to reading more about the breathing insights you found!

      I think I fixed the recipe issue and responded to one of your previous posts, take a look and let me know if it is clearer now 🙂

      Thanks,
      Charlene.

  • steve-dragoo

    Member
    July 27, 2018 at 10:30 am

    Hi Charlene,

    I will probably call an attorney soon as I do have a work restriction letter.  I have been in a variety of senior executive management and field positions in sales and marketing and can find some work on UpWork as a freelancer but that platform has changed a lot the past 5 years.

    As the mental and physical reality of this disease sets in, we just want to be together under one roof. So we continue to work o her papers.  I probably will go visit her in November or December.

    Thanks for fixing the smoothie recipes – I’ll have a look.

    Here’s the breathing link:  https://pulmonaryfibrosisnews.com/2017/10/18/4-breathing-exercises-pulmonary-fibrosis/

    Take care,

    SteveD

    • Charlene Marshall

      Member
      July 28, 2018 at 8:50 am

      Hi Steve,

      Thanks for getting in touch! Yes, if you wanted / preferred to continue working and you had a letter from the doctor saying you could (even with restrictions or accommodations) then I think it is important to speak with an attorney. They have so much experience with this, and I know there are lots out there who are so passionate about employers making accommodations for employees when their doctors say they can still work. Goodluck with this!

      That will be nice to visit in November or December, I’m hoping you remain healthy enough to do that 🙂

      Thanks for sharing the link – Wendy is one of our writers for PF News – she is great. I need to revisit the link again so will try to do that today. I hope your weekend is off to a good start.

      Kind regards,
      Charlene.

  • steve-dragoo

    Member
    July 7, 2022 at 11:07 pm

    @michael-lamkin

    I started on Metformin over 10 years ago because of diabetes and can’t say if it has had any positive impact on my 6-year-old IPF. But if you insist on trying it be mindful of a low starting dose and initial side effects that do go away.  I believe some pharmacies give metformin free (Walmart?) but not sure…

    Stay well
    Steve

  • papitohead

    Member
    January 10, 2023 at 5:39 pm

    I am also a veteran. They are treating me with Ofev. I heard about the Metformin, but not taking orally. I have been taking Metformin for type 2 for about 5 YERS OR MORE AND I am in end state with IPF. I did a research on the rumors that metformin could do the trick, but that was using it as a pump, but looks like either did not work or still too far from their goal. At the VA hospital they don’t want to hear about natural meds. They say they only go by science. But I got me another pulmonologist which is the best here in the Island of Puerto Rico. I told her about zinc and resveratrol, gotu kola, Niagen and NAD+ and she said to go ahead and keep doing it. Those docs at the VA are very strict and also many of them are just students.

  • kim-morrison

    Member
    January 12, 2023 at 2:42 pm

    I have been taking Haritaki for over a year. Study at UAB showed it reversed the scarring in mice. It comes from a tree in India and in India it is known as the miracle drug I will have CT next month to see the effects but I can tell you I feel so much better since I started talking it

    No oxygen rarely use rescue inhaler and very very little cough now

  • kim-morrison

    Member
    January 12, 2023 at 2:42 pm

    I have been taking Haritaki for over a year. Study at UAB showed it reversed the scarring in mice. It comes from a tree in India and in India it is known as the miracle drug I will have CT next month to see the effects but I can tell you I feel so much better since I started talking it

    No oxygen rarely use rescue inhaler and very very little cough now

    • dianaj

      Member
      January 13, 2023 at 8:29 am

      Thank you for sharing this exciting news.

  • steve-dragoo

    Member
    January 12, 2023 at 10:59 pm

    @michael-lamkin

    Hi Michael,

    A number of pharmacies will provide metformin at a love cost probably about the same as the co-pay but I do not know if they require a prescription.

    I have used metformin for 12 years and can’t tell if it has helped my IPF or not. I do use a bucket of supplements daily however.

    Stay well…
    Steve

  • christie

    Moderator
    January 14, 2023 at 4:33 am

    Hi all, just a friendly reminder to ask your medical team and refer to trusted sources when you are researching alternative therapies and “miracle drugs”… medical journals, scholarly articles, university studies, etc. are all good sources. Google Scholar and PubMed are good sources to start with and have many free articles and studies to read.

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