Steve Dragoo
Forum Replies Created
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Been on NAD+ and Sirtuin 9, 2 years+ (it is a little superior to sir 1). Also alpha lopic acid – with caution – it can make my heart skip a beat sometimes. These 3 have helped me significantly, meaning everyone is different, and I am 76 and 9+ years with IPH, also PAH, and now heart failure on both sides.
Also take NAC, Querctin, among other supplements and meds. Essentially, I can do all as before at a slower pace, except walking much. Hope that helps…
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Life expectancy is the big one but I have seen various levels of care that are disappointing. Some “pulmonary” PTs are really focused and others do what they need to get by.
Some areas of white papers could be followed up on better – including discoveries in our RNA/DNA that might promote actual healing, not just maintaining – but they take sooo long in the approval process.
Stay well…
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@jai – Thanks for the insight. Caused me to reach out to my Pulm Doc for accurate info on PAH, DLCO and FVC.
Stay well…
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Charlene – those are harsh realities. Since I don’t qualify for a transplant, I often look at various supplements that might complement the lung prescriptions I’m currently taking, and I keep finding new things to research and determine if they are worth trying. Have started several and stopped a few because they didn’t help or seemed to make me worse off (could be a tolerable/or not issue).
Since returning to the USA on 12/1/2023, I am worse but still able to do everything just at a slower pace. Diet, water, and exercise are vital tools we can all keep using. Supplements are big, but obvious cautions about them and potential interactions are warranted.
At 9 years in next month, I can only say hope, strength, and for me, faith are part of the mindset that transports me from being a victim (which I know you are not) to peace and Joy. That is something we can all look at in varying degrees and become more assured that our tenable position with this lovely disease is mentally manageable..
Stay well…
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Living almost 9 years with IPF and long before that, I knew life on earth can end abruptly at times, but can drag out in suffering, too. Because I decided to see if there really is one True God, I investigated the Bible, starting 23+ years ago, to observe what it has to offer for life. I have not been disappointed, but there are far too many answers to post here, yet I know this sin-laden world filled with disease will not survive the return of the One True Hope in Christ Jesus. Sound like a rant?
Watch and see, humanity is not capable of solving its problems with so many despots vying for power. Sure am glad I don’t get caught up in all of that and have a sure hope…
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@Charlene Marshall – that’s a very good find. Thanks for sharing…
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I have used serrapeptase for 7+ years and it still takes care of most of that problem. It does get worse as we progress through IPF/PF. There are some cautions – it can never be taken around any other pills and avoid food for at least an hour. Let me know if you want some more information…
Stay well…
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With something this easy to grow in SE Asia, you would think you can buy it somewhere…
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Coming up on 9 years in October, I can understand how some might feel that way, Charlene. It is sad and can even be discouraging when someone we know suffering through any form of PF has gone to their rest. Many times, I see survivors post that they are thankful for our support and glad their loved one is no longer suffering. To many, that becomes a blessing. We that survive longer become the voice of experience, and that blesses me to know I have positively influenced someone in their doubt or even shame.
As I have witnessed hundreds upon hundreds of people dealing with some darkness in their lives, I know that we were never created to or have learned how to deal with negative emotions. A lot of people become stuck at that stage and never successfully process through grief that may be ongoing in this world. Thankfully, I look for peace and harmony, even love and joy, with Whom I serve.
Stay well…
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Only a class IV laser works. Dr Andrew Hall has the protocol on his website. He is a chiropractor in Sonora CA. Hope it helps…
Steve
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Been using it for mucous 7 years. Caution do not take with any other pills for at least 2 hours, as it will dissolve them fast, also no food for a couple of hours. I take 720,000 SU (6 pills) before bed and buy it on AZ – delayed release. It has been used for liver scar tissue for decades and may – emphasis – help in the lungs.
Stay well…
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8 years ago, I started having serious mucus problems and did some research about Serrapeptase, it was initially used to reduce scar tissue in the liver for a long time. Tried it then still use it now BUT a very serious warning it is measured in SU and I take about 500000 su in the evening before sleep (4 pills) – the warning is NEVER take it anywhere close to other pills – it dissolves them faster and that’s not good, never take with food. Serrfapeptase dissolves protein, which it sees as pills and food as in general.
If you can find a version that delays dissolving, that will allow it to reach your gut more, instead of stomach acid dissolving it with less effect.
Stay well…
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Sorry for your loss Samuel… Steve
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When I cough, sometimes people give a harsh stare because they are afraid (post-COVID?). To avoid the blank stare after a conversation of IPF, etc, I just say, “allergies – gotta love ’em,” and move on…
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Your O2 provider may have a mask you can use instead of a cannula to help you while walking. All my life, my nose could randomly plug some, so the small mask with a hole in it helps when I need O2 and my nose says nope.
Stay well…
Steve
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I flew back from the Philippines 16 months ago which took almost 2 days and had no O2. Currently on 2L during any activity but 16 months ago only needed O2 at night.
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I take a substantial number of supplements, including those 2. Not knowing your situation, many can benefit from D3, K2, and a good B-complex.
I was in the Philippines for several years, and they know nothing about IPF and its siblings. So, being on my own, I discovered several things that work for me. At almost 76 and 8.5 years into this lovely disease, I have been deeply blessed…
Stay well
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What were your results in the trial and post? Thanks…
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I’ve been looking for a reasonably priced continuous flow POC up to 4L. Any insights? Thanks…
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Wll do. I was offered a slot in phase 2 of the Boheinger but out of the country at the time so missed it…
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Thanks a lot Alex. Good insights. I’ve been on this platform (PF News) since mid-2018…
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They have been very slow in completing registration last July, Andy…
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Hi – there are a couple that offer genuine continuous flow but hard to find…
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I don’t see this as a political post, it is currently a fact of life and may eventually affect us more or less.
Stay well…
Steve