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    • #14914
      Zoe james
      Participant

      I have been looking after my mother who was diagnosed with ipf  in March this year. she had an exacerbation of her illness in April , was on 19 litres of oxygen with sepsis. she had antibiotic intrevenously and she was given 40 mg predisinone steroid as well as other meds.

      I have given her Boswellia capsules, Nfr2 Protandim, ( which is green tea, tumeric, astralgus and Bacopa) Serraptase and Multi vitamins. she has reduced steroid to 10 mg and oxygen to 1.5 litres. She is now walking again and xrays clouding was clear.

    • #14920

      Hi Zoe,

      Thank you so much for writing and for bringing up this topic in the forums. I anticipate it’ll be a popular one!
      Sounds like your Mom is lucky to have you by her side, although I am so sorry to hear of her diagnosis and sepsis – that must have been such a scary experience for all of you! Glad she has been able to wean her oxygen and steroid use down.

      Thanks for sharing about the alternative therapy options you’re giving to your Mom. I am very reluctant about Serrapeptase as I read a study about how this isn’t beneficial for people with IPF. That said, if it is working for your Mom I am glad; we’ll likely all respond differently to various therapies. Best wishes to you and your Mom!

      Charlene.

    • #14923
      Zoe james
      Participant

      Hi, It is difficult to anticipate germs at this time of year, as they become more prevalent. I am giving my mother regular doses of elderberry which I buy dried and boil in water. This has been apparently very helpful to many for ipf cough and to help with anti viral.The elderberry was used by the uk government in the nineties when other flu remedies failed. I gave it to my mother in hospital and I am sure she recovered from her exacerbation due to the anti viral affect. It stops viruses replicating, also having influence on herpes viruses, ie glandular fever and other lung viruses. does anyone else use this ? Zoe

       

      • #14941

        Hi Zoe,

        Yes, I couldn’t agree with you more about the prevalence of germs this time of year! It is so important for us to keep as healthy as possible, and I’m glad to hear about your tactic for helping to keep your Mom healthy. I’d never heard about elderberries being boiled, that is a cool idea. Do you serve it to her as a form of tea, or how does she consume it? Very interesting to learn about all the properties of it, thank you Zoe!

        Best wishes to you and your Mom!
        Charlene.

    • #14924
      Zoe james
      Participant

      Thanks Charlene for your message re Serrapeptase, I would love to know what the negative was re ipf. obviously , with the lack of research into alternatives we are all fishing a little for indicators of what works.

      Does any one else follow a diabetic regime, have a link with high blood sugar or hypoglycaemia and ipf , as I understand that there is a possible metabolic link , hence the metformin having some results ?

      • #14940

        Hi Zoe,

        Sure, I’ll try to track down the article on Serrapeptase for you. It may actually be posted somewhere on this forums site, as it was in discussion with someone else who was wanting to try this form of alternative therapy. I don’t follow any type of diet specifically, as my nutritionist (ahead of lung transplantation) talked to me about the importance of ‘everything in moderation’, including sugar. As much possible, she encourages natural sugar vs. refined/white sugar but I do try to balance everything else out.

        In terms of the Metformin, there definitely has been studies linked to IPF / PF management, especially recently. However, there has been a number of people on the forums talk to their doctors about Metformin and everyone (I believe everyone, anyways) has come back to say their doctors say the results are inconclusive in terms of benefits in humans right now. If anyone else can confirm this, please do by replying to this post 🙂

        Thanks,
        Charlene.

      • #14958
        Zoe james
        Participant

        Thanks Charlene,

        I buy the elderberries dried from The Real Foods Company, there are many places that sell them. They need to be cooked as raw elderberry is poisonous.  I use two teaspoons of dried elderberry in a pint or so of water and a heaped teaspoon of honey. I stew for 5 to 10 mins and strain to serve as tea.

        Zoe

        • This reply was modified 3 years, 6 months ago by Zoe james.
        • #14972

          Oh good to know! That actually sounds like it would be a nice warming cup of tea as our weather turns cold here in Canada. Ill keep an eye out for dried elderberry packages and maybe give this a try. Thanks for sharing 🙂

          Charlene.

    • #14926
      Zoe james
      Participant

      I mentioned before that I have been using Protandim NFR2 activator for my mother. This is a new drug , natural drug. It increases energy and reduces oxidative stress on the body in thirty days. There are four or five medical trials showing this. I took it myself before giving it to my mother. It has zero side effects  and my specialist ok d it at the hospital.  I am sure it has improved my mothers condition as the dictor is amazed at her recovery rate. I decided to share as I feel any info into others experiences gives us all somewhere to look. I am looking forward to hearing other remedies and paths others are trying. In the uk over 75 my mother has not been given a treatment option, ie anti – fibrotic, as nice guidelines of nhs regard her as not cost effective treatment option.Ie It is not offered. I have felt it is important to keep researching and looking for similarities and others experiences. such a huge support to join this forum Thank you !

    • #14945

      Hi Zoe,

      Thanks for sharing, I’ve never heard of this drug before but always good to know about natural, alternative therapies. How did you learn about the benefits of this drug? Really glad to hear the specialist approved it at the hospital too, this is always important when exploring alternative therapies.

      Really glad to hear you’ve found our forum beneficial, and I hope information can continue to be shared that is helpful for you and your Mother. Feel free to reach out anytime!

      Warm regards,
      Charlene.

    • #14956
      Zoe james
      Participant

      Thanks Charlene,

      I learnt about the benefits at a seminar run by a friend who had cured cancer through diet alongside conventional medicine. There are four studies of Protandim on mednet, a drug testing site. Nfr2 could play a role in ipf , it is oxidative stress related. I have found it increases mums energy , and reduces anxiety, it isn’t,t a cure, but the effects are very positive and has very few negative drug interactions.I will try and find a link to a review.

       

      Regards Zoe James

       

      • This reply was modified 3 years, 6 months ago by Zoe james.
      • #14969

        Hi Zoe,

        Thanks for sharing, I’ll definitely check out the links on what you post! I am always cautious about webMD as it isn’t a credible site for literature, but I know there are likely other studies out there that support what you shared too, so I am still appreciative of the links you provided. I’m really glad the side effects are so positive for your Mom, and that there isn’t anything negative compounding those benefits. That in itself is reassuring!

        Thanks for sharing!
        Charlene.

    • #14960
      Zoe james
      Participant

      Hi, A Link to elderberry uses. Pneumonia is reduced by elderberry, as well as herpes viruses.

      https://www.webmd.com/cold-and-flu/news/20031222/elderberry-fights-flu-symptoms#1

      • #14970

        Really interesting about elderberry being able to fight off flu symptoms or short circut people’s fight against influenza. It is an article (not based on a study, or not one that was linked to the article which leaves me a bit skeptical..) from 2003, and from my understanding, the influenza virus has strengthened over the past 10+ years since this article was written. I am going to look up to see if there is more recent literature that supports this too 🙂

        Thanks for sharing!

    • #14961
      Zoe james
      Participant

      Another link to herpes viruses and ipf link.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4050527/

      • This reply was modified 3 years, 6 months ago by Zoe james.
    • #14963
      Zoe james
      Participant

      A link to Protandim and some indications of it’s uses. Zoe

      Prestigious American Heart Association Journal, “Circulation,” Publishes New Peer-Reviewed Study With ProtandimSoles 4 Souls

      Dr. Norbert Voelkel and researchers at Virginia Commonwealth University (VCU) demonstrated the ability of Protandim, our patented dietary supplement composed of five highly synergistic “indirect antioxidants,” to protect the heart in a laboratory model of pulmonary hypertension in rats.

      “We are encouraged by the results of this study, which was independently funded and independently conducted by Dr. Voelkel and his colleagues at VCU,” said David Brown, CEO. “These results illustrate the unique antioxidant, anti-inflammatory, and anti-fibrotic properties of Protandim. Scientists have long known of the involvement of oxidative stress affects susceptibility to right heart failure in animals. Although it would be premature to conclude that similar benefits would be seen in humans, these remarkable results open the door to the possibility of future research on pulmonary hypertension and Protandim in humans.”

      Pulmonary hypertension is a health condition characterized by high blood pressure in the circulation between the heart and lungs and can result in death due to right heart failure. In the study, animals pre-treated with Protandim experienced strong cardioprotective effects. Protandim was shown to protect the heart by increasing the expression of protective genes and by preventing the formation of scar tissue, or fibrosis, in the heart. The study showed that Protandim also prevented capillary loss in the heart muscle of the animals. Protandim also prevented the death of heart cells and significantly lowered osteopontic levels by more than 50 percent. Osteopontin is a factor that leads to scar tissue formation, a cause of heart failure.

      • This reply was modified 3 years, 6 months ago by Zoe james.
    • #14971

      Really interesting too Zoe about Protandim and its effect on combating right heart failure in animals. I wonder if further studies have been conducted in how this applies to humans with pulmonary hypertension (PH). The anti-fibrotic effects sound promising as well, are there any studies linking this to the better management of IPF? Where do you obtain this for your Mom?

      Charlene.

    • #14976
      Zoe james
      Participant

      thanks Charlene, There are many articles and studies on mednet re humans and reactions to Protandim. As I said it isn’t,t a cure but has improved energy and reduces oxidative stress.Would you like me to post more ?

      I receive my Protandim through an agent. Kind regards Zoe James

      • #14987

        Hi Zoe,

        Thanks for clarifying, it is good to know that studies have been done beyond animals and that the benefits of Protandim are starting to be shown in humans as well. It’s really nice to hear that it has alleviated some side effects for your Mom and I hope that continues. I am going to politely decline additional links posted about this on the forum, as I think lots are here and if people are interested in more information they can do some research 🙂

        Thanks again for all you contribute to the forums!
        Charlene.

    • #14983
      Zoe james
      Participant

      Hi , Another article which in one section includes Protandim and the role of oxidative stress.

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4807858/

      For me , knowing that there is no cure, I am keen to research possible alternatives. Inflamation is a key factor re illness in many organs of the body.Hope this helps !

       

      Zoe

      • This reply was modified 3 years, 6 months ago by Zoe james. Reason: capital letter missing
      • #14988

        Thanks for sharing this additional link Zoe! I am sure folks interested in this alternative therapy will read up on it too. Inflammation can cause us so many problems when it comes to chronic illness, I agree. Thanks for sharing your research with us.

        Charlene.

    • #15017
      Kate E
      Participant

      Thank you very much for this discussion, and thanks for all of the links. All are much appreciated, and I’ll hope to look into them more this weekend.

      • #15051

        Our pleasure Kate, thanks for being part of this wonderful community. There are some amazing people on this forum who will help as much as they can! Glad you’re finding the links beneficial and please feel free to write anytime. Welcome again!

        Warm regards,
        Charlene.

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