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  • jim nox

    Member
    July 6, 2022 at 10:00 pm

    I was diagnosed in 2015. Being a data hog I have kept pretty close track of progression (6 min walk test almost weekly here at the ranch and PFT’s with pulmonologist when I visit twice yearly. Over that period initial decline was slow and fairly gradual until I took the first Moderna Covid Vax Jan 5th, 2020, and noticed a sudden 15 (or so)% decline in the 6 min walk. With concurrence of my doc, did not take further VAX.

    Because of the COVID threat, I started taking an immune support collection of vitamins and supplements (Vit C, B6, B12,  etc,) including Zinc. Since spring of 2020 I have taken daily doses of the above and the Zinc component is 50mg of Zinc Gluconate. I read somewhere that Zinc Oxide is poorly absorbed and a cheap version of Zinc. So be aware of the actual type of Zinc taken. Bottom line, as an 84 y/o male weighing around 140 lbs, I have experienced no adverse effects of the 50mg dose of Zinc daily for two years now. Unfortunately, I have detected no special benefit to my IPF/PH from the Zinc either. I am now on Oxygen 8L 24/7 and the IPF has now progressed into Pulmonary Hypertension, which as caused a much faster decline.

    I am only reporting these experiences and apparent personal results for others, since I appear to be a fairly “old timer user” of Zinc at 50 mg/d for several years and am reading a lot of questions by “new comers” regarding dosage and efficacy of Zinc. I am continuing the vitamin regimen for anti- COVID purposes, ever-hopeful that it will help with the IPF also.

    My best to Charlene and all our fellow suffers,

    Jim Knox

    • Millie

      Member
      July 7, 2022 at 8:31 am

      Hi Jim:

      Wow.  I’ve had covid plus 2 boosters and am not aware of any decline in my lung function.  I guess ev erybody reacts differently.   I am 82 years old and was diagnosed in December 2021.  I had it for 3 years without any symptoms prior to diagnosis but was never told.   My pulmonologist tells me that I could have had it for many more years but with slow progression.   Thanks for sharing the info  on your journey.  I was told that I have severe scarring but no honeyhcomb pattern.  I guess that is a good thing.  Good luck with your future journey and keep us posted.  We care.

  • Martha McAdams

    Member
    July 7, 2022 at 2:11 pm

    I have taken zinc for years and do not remember the last time I had a cold or any kind of respiratory symptoms. Hopefully it will help slow the fibrosis as well.

  • Sally

    Member
    July 7, 2022 at 2:21 pm

    Be careful that you don’t take too much zinc as it can be harmful in many ways.  My doctor said there has been nothing medically conclusive about zinc.  He said when it gets out of mice trials and into some clinical trials, we could see some help.  But wait til then !  Zinc can be  good in moderation.

  • Charles

    Member
    July 7, 2022 at 3:56 pm

    Hi guys! Chuck here with questions and some information. First the question is, if the conclusion from the Cedar Sinai says that there is a reduction in our IFP, then why are the few people above saying that they have been taking Zinc for years and do not see any change? I am very familiar with Cedar Sinai and respect them a lot. So can anyone clear that up a bit for me? Yesterday i saw my GP and she checked me out and saw no difference in my health situation from a doctors point, not a pilmonologist view. She OK’D me for using the 50 mg zinc daily, which is now at 14 days. However, as Millie said, it’s a very short time so let’s see how i feel in a couple of months. Although i have noticed one thing different. I seem to be a little stronger. I have been getting quite week and lately that has changed. Zinc? Who knows. Just thought that i’d mention that. As far as the Covid thing goes like Jim said, unlike Jim, i have had my two shots and the two boosters and do not feel that they have interacted with me negatively at all. However, i had no reaction from any of the four shots at all, except fro the last booster i got. I did have a little pain in the arm that they stuck the needle in. But let me add that in my 80 years of being a member of the earth, i can’t remember having a cold except for maybe three times, and i have never had a headache. I don’t get the small stuff, i only get IPF, heart attacks and the like. Now that brings up a new subject. What if i was to get cancer and it was in my lungs. Would the cancer eat away the IPF scaring? Or would i have two pain in the butt problems to worry about! Very interesting huh! I am still waiting for the answer to the question i presented to my pulmonologist about the Cedar Sinai study,and when i get her opinion back i will certainly spread the news right here on this remarkable site. Stay healthy, stay happy and safe. Chuck, over and out!!

  • Robert Griffin

    Member
    July 8, 2022 at 12:02 pm

    Yes I have been taking liquid Zinc that I get from mail order. The website is vimergy.com. It definitely helps with my immune system when I feel a cold coming on. My use of  zinc keeps my cold symptoms milder and length shorter.

    I usually take 1 to 2 droppers full as my daily maintenance dose and use the 1 or 2 droppers full spread out  over 4 or 5 times  during the night and day if I have a cold.

    As far as helping my IPF, all I can say is “I am Still Here”  with no noticeable side effects from my taking the liquid Zinc. I was taking the zinc tabs  before but I found the liquid to be more effective for me.

    I hope this helps.

  • Millie

    Member
    July 17, 2022 at 11:46 am

    Hi Charlene:
    I re-read the article from Cedars Sinai and found that it also refers to NAD and sirtuini. This NAD is a coenzyme that is similar to vitamin B3. Perhaps it should be taken as well with the zinc. You can buy both NAD and sirtuini on Amazon. Does anyone have any thoughts about this? I’d like to hear back. Thank you. Millie

  • john styles

    Member
    July 17, 2022 at 1:47 pm

    I will order and try it.

  • john styles

    Member
    July 17, 2022 at 1:47 pm

    I will order and try it.

  • Charles

    Member
    August 30, 2022 at 6:49 pm

    Hi ya’ll, it is Chuck. For some reason i have not been receiving any of all this conversation for a month or more. I don’t know why! However, i did see a new Pulmonologist and asked her about the Cedar Sinai material also she had me do a CT and she never got back to me. I called the office a couple of times and left a message but never heard back. So now i have contacted a new Pilmonologist and am waiting for my appointment to see her. That is if i don’t croak first. However, i have been on 50 mg of Zinc for over 60 days and i actually feel worse. Breathing seems harder. So i have stopped it and will wait for my new pulmonologist advice. It’s a bitch when your doctor doesn’t get back to you when you have a fatal disease. It’s like they just don’t care if i die or not. Some doctor, huh! If anyone would like her name and address it is, Laura Ann Lubarsky with Dignity Health in San Luis Obispo! Funny huh! 08/30/22

  • John K. Grubb

    Member
    September 1, 2022 at 7:04 pm

    Saw my pulmonologist today for 6 month visit after being diagnosed.

    I mentioned to her that I had joined some groups with IPF and there was some exciting research out of Cedars Siani regarding zinc.  Her response was I must of read it on Google.  I responded no I had read the research report done by Drs. Paul Noble and  Carol Liang and in laymen’s terms  they had discovered that there were some compounds/conditions in people with IPF that prevented people with IPF from absorbing zinc; that IPF patients who took zinc seemed to improve.  I asked her if she could contact them and find out their recommended protocol.  She then Google the article, scanned it and dismissed it by saying it would take years of research before that became a treatment.

    My read is she is just like someone else described most pulmonologist — too busy treating COPD, asthma, etc, to really know much at all about IPF.

    As someone said earlier you have to been your own advocate.

    Meanwhile, I will keep taking zinc, follow the research on zinc and keep looking for a new pulmonologist.

    • Jeff Taylor-Jackson

      Member
      September 6, 2022 at 10:20 am

      Hi John,

      Throughout history, there have been people who disregard new research. Normally it’s because it’s outside of their field of expertise. Frank Whittle – Jet Engine, Isambard Kingdom Brunel – Suspension Bridge, Screw propellor, I could go on.

      Hedy Lamarr – yes the film star, went to the Navy saying she had developed a method of scrambling messages to make them secure by frequency shifting. She was told by the old geezers that it would never work and she should stick to the films. Now, all communications in the world are done by frequency shifting – all thanks to Hedy Lamarr.

      I am not dissing your pulminologist, certainly they know more than me about medicine, I’m just a Chartered Engineer, but dont be put off by their response. I’m sure the folks at Cedars Sinai are on to something. If there is no research, then there’s no cure right? If it doesnt work (worst case) then that line of research can be shelved and we look for another cure.

      In the meantime I hope that the research into Zinc has some great results, what I read (like others here) in their report is very encouraging.

      Sometimes that cure is right under our noses and might even be found by accident. Penicillin for example.

      Stay safe, stay positive!

      Jeff in England.

  • john styles

    Member
    September 3, 2022 at 8:16 am

    Millie said above to re read the article because Zinc was taken with other 2 other additive’s and one not available. now I have been taking Zinc with the 2 additive’s and no improvement on breathing but blood pressure came down another 10 points. I will keep taking the above.

    • Millie

      Member
      September 3, 2022 at 9:21 am

      Hi John:
      I wouldn’t expect improvement with the zinc formula very quickly. The scarring may have been going on for years. It’s a slow process and improvement will also be a slow process is what I believe. Just have patience and hope for the best. The NAD and sirtuini are available on Amazon. Continue to hang in there. We can’t give up the fight.

  • Jeff Taylor-Jackson

    Member
    September 6, 2022 at 10:50 am

    Hi all,

    Throughout this thread it seems that there is a feeling that any research will be years before any results or drugs will be available.

    That certainly is true if the current method of clinical trails is undertaken.

    Google REMAP ILD

    Remap stands for Randomised, Embedded, Multi-factorial, Adaptive Platform.

    REMAP was used to bring a Pneumonia drug to market in a lot quicker and efficient manner. Then along came Covid and the REMAP method was again used to bring the covid vaccine to market in a short period of time.

    There is now funding to look at using REMAP for ILD and IPF, so lets hope we can find a drug that works for us in a shorter period of time than has been taken in the past.

    This is not a UK thing, this project is an international, collaborative project involving ILD experts from around the world, including scientists, clinicians, patients, patient organisations, and industry.

    Stay safe, stay positive everyone!

    Jeff in England.

  • Mike Ktori

    Member
    November 14, 2022 at 3:38 pm

    I asked my pulmonologist about Zinc and she, more or less, told me to avoid Dr Google and ‘Go home and enjoy a last Christmas’. I’m taking zinc anyway and have ordered some NADs.

  • Jeff Taylor-Jackson

    Member
    November 15, 2022 at 1:42 am

    Hi Mike,

    Dont be discouraged by the response. Not all clinicians are as narrow minded as yours appears to be.

    There is some great reseach going on, including some lines that your pulmonolgist may never have heard about or even considered. I didnt use “Dr. Google” I read the article published in a medical journal about Zinc pathways.

    Dont dismiss everything, someday, there will be a cure.

    Keep safe, stay positive.

    Jeff

    • Mike Ktori

      Member
      November 15, 2022 at 3:26 am

      Hi Jeff, Thanks for you encouraging words.
      Mike

  • Charles

    Member
    November 15, 2022 at 3:10 pm

    Hi ya’ll, it’s Chuck again. 11/15/22 I had read that article from Cedar Sinai about 3 or 4 months ago when it had come out. I started taking 25 mg since then and still do. I personally do not see any chance, but a recent ct scan showed very little progress of my IPF, which by the way i was detected in late 2013. My pulmonologist has no opinion on it. I am now on almost 100% oxygen, but i am still here. Keep your heads up and a smile on your face and maybe there will be something that will work. Chuck

  • Christine McCann

    Member
    November 15, 2022 at 3:20 pm

    There are several vitamins that help me feel better. D3 for sure because of the sensitivity to the sun aspect of Esbriet, Liquid B12 because I am over 50 and the enzyme to absorb at this age is gone, C, CO Q10, zinc, Magnesium, potassium because I have lost my taste for bananas. I concurred the nausea by making sure I swallow the pills with food. I was on the 3×3 day caps but have graduated to the 1×801 pill 3x a day and that is working pretty good.. My appetite has slowed and every once in a while I can’t stand the smell or taste of something (like Bananas) that I ate every day for years. Now the coffee is getting iffy. If I ever take the Esbriet without the food at the same time I get a queezy stomach.

  • Jeff Taylor-Jackson

    Member
    November 15, 2022 at 3:23 pm

    Hi Chuck,

    Hang in there mate, I agree 100% with the last bit of your comment.

    Keep the faith, trust in the good work the researchers and clinicians are doing right now to find a cure for us all.

    Jeff.

    P.S. I also did the same, I read the article and started taking 15mg of Zinc a day. My consultant knows about it, she is of the opinion “it cant do any harm!”

  • Paul Swanson

    Member
    November 16, 2022 at 8:33 am

    I did share the article on Zinic with my doctors they were non committal and just commented “interesting “ I was probably more surprised that they had not already seen the article.Anyway,I did start taking a Zinic supplement in July and I feel it has helped me .I only need oxygen when exercising. Can’t say for sure it is a direct result but I will definitely keep taking it.

  • José

    Member
    November 16, 2022 at 8:53 am

    I was diagnosed with IPF one and a half years ago and being at End-State. I could not accept the – years left and since there was no scientific cure, I went into the alternative meds field. I remember last year they came up with an article that duckweed may help, so I started three little pools where I grow it and take a tablespoon in a smoothie, But this summer came so did this article about zinc. So now I am taking 50MG of it but complementing it with NAD+,GOTU KOLA, CURCUMIN, BERBERINE, METFORMIN,ETC.
    I have not mentioned this to my pulmonologist because is not science and is at the Veterans Hospital, however, I do have another pulmonologist that I will talk about this next week.

    • Mike Ktori

      Member
      November 16, 2022 at 3:02 pm

      Hi Jose, I’m in a similar situation. I just got my bottle of NAD+ yesterday and I’ve been taking Zinc for a couple of weeks. I’m 78 and I don’t feel ill simply out of breath. My best wishes for you.

      • José

        Member
        November 16, 2022 at 6:23 pm

        Mike,78 is young, I will be 77 come January. I see you have read the original post. It interested me the part of the protein that transport the zinc to the necessary place. The Original post tells you how to increase this which is called surt1. I also saw Metformin helping which I am taking for my AC1. I ordered Gotu Kola and looking for a good source of DHA.
        I may sound desperate and is true. I was told 1 to 3 years and it has been one and a half already. I am on O2 but feel strong and want to start moving more which the report also recommend.

      • Mike Ktori

        Member
        November 16, 2022 at 8:53 pm

        My pulmonologist was critical of my talk of Zinc and has told me to ‘Go home and have a last Christmas with my family’. I have only been diagnosed recently (with CPFE) but suspect that I have had this for quite some years. I suspect that it’s Amiodarone toxicity because I have been a non smoker since 12th Oct 1979 ! Most of the time I do not feel ill at all although I do have Oxygen 24/7 and a very sore nose. I’m unable to peruse my usual pastime of wildlife photography so I have taken up watersplash photography which is keeping me busy and amused. I may even produce some competition quality pictures. I find that I am now to be under a Palliative care team. That makes me more determined than ever to outlive the lot of them. My best regards to you.

      • José

        Member
        November 17, 2022 at 4:09 pm

        About a year and a half I was diagnosed with IPF. I was told I was at 1 to 3 years left, so I had this for a long time. The reason is Idiopathic is because there is no known causes.

      • Mike Ktori

        Member
        November 16, 2022 at 8:58 pm

        Oh One other thing I take is CBD oil. I get kiara from Switzerland and put a few drops under my tongue at night.

  • Todd McMillan

    Member
    November 16, 2022 at 9:53 am

    Hi All,

    53yo with mild IPF and on OFEV for 1.5 years. I also found the article on zoom to be interesting and started taking 15 mg zinc tablets along with 300mg Niacin but the Niacin caused significant inflammation in my liver, and I had to come off it.   Be very careful with Niacin. It is known to cause liver issues.

  • Susan Gibbard

    Member
    November 18, 2022 at 2:02 pm

    I noticed in the studies themselves, they are using zinc sulfate, not picolinate. It’s been hard to find and I only found a combo of calcium 1000mg, magnesium 400mg, zinc sulfate 15mg. The directions are to take 3x/day with food.
    There are also other precursors to make the zinc effective which are NMN (kinda expensive) and “sirtuins”, found in various foods. It’s difficult to navigate through the scientific jargon to figure out what the doses should be, so I don’t think it’s as simple as taking zinc alone. But, I keep trying!

    • José

      Member
      November 18, 2022 at 3:04 pm

      Magnesium 400 is fine, but the calcium 1000mm I would stay away from. Calcium tends to build up in the brain which causes dementia. I am doing 50 grams of chromium and 100 mg of NAD+ and then complement them with curcumin, DHA, Metformin, etc.

  • DJ

    Member
    December 29, 2022 at 9:07 am

    Zinc supplements need to be taken with copper. Taking zinc alone can deplete copper. Also, has anyone heard about Azithromycin helping with PF? It has reversed scarring in mice. I think they are going to start trials.

  • Millie

    Member
    December 31, 2022 at 9:59 am

    I have been taking 22 mg of chelated zinc daily for about 3 months now and don’t feel any different. I am using oxygen 24/7 but don’t feel like I have anything. My breathing is good and I have boundless energy. I was diagnosed 1 year ago. The website pfwarriors.com has information on the correct dosing that was found in a study at Mt Sinai in California. They recommend daily 1200 mg of NAD+, 1 gram or 1000 mg of resvertol and 30 to 50 mg of zinc. Has anyone tried this yet? Check the website for additional info.

    • Sach

      Member
      August 23, 2023 at 6:53 pm

      hi millie, was trying to look on pfwarriors to see the dosing and can’t find it there anywhere, could you send me the link? tx

  • Bob Van Kleeck

    Member
    January 2, 2023 at 10:28 am

    I’m 75 years old and was diagnosed January 2020. I take Espriet and my tests show stable lung function. This conversations on zinc are intriguing as the research that Dr Noble has reported on looks promising. I will bring this up with my pulmonologist in February. Thank you all!

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