Steve Dragoo
Forum Replies Created
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There is a vast amount of waste and corruption in our top-heavy government which will cause far more serious future consequences if not dealt with. However, at least initially, legitimate research will not feel much of an impact.
I had to survive on my own for several years in the Philippines where there was little help for ILD/IPF/PF – except O2. So if I have to do it again, I will…
Stay well…
Steve -
Hi Tempo – AE can be substantially different per individual and per incident. Had at least 2. The 1st was almost devastating. Initially I could not not sit up in bed. Didn’t eat for almost 6 weeks but I don’t recommend it as a weight loss program. It took almost 10 months before I could help again around the house and I have never recovered completely since Sept 2020. The 2nd was May 2022 and was much milder mainly was very tired and weak but got through it ok.
Any cold or – worse – the flu has a harsher impact on those with IPF I was 1st diagnosed with ILD Oct 2016 in the Philippines at age 67 and will be 76 in May. So this coming Oct will be 9 years into this lovely disease.
Lots of things you can do to help yourself.
Stay well…
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Regards Dextromethorphan – it is is some cough syrup OTC and I use it almost daily for 2+ years but have zero insight for stopping/slowing (I)PF. A quick AI search indicates it may help buttttt – it is AI saying that..
Interested in the German study…
Stay well,
Steve
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I have looked at it and may get a small unit later on but it can be a little dangerous if not used specifically. I would ask about it with a few doctors, maybe even AI.
Stay well,
Steve
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I have a friend married for 57 years and his wife is quite ill with COPD, covid and covid pneumonia. I cannot imagine your loss but you have some fantastic memories to look back on. Nothing will fill the loneliness but One thing I have found – a daily Spiritual walk, about the only thing of hope and consistency in this world…
Steve
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Hey Rod – the doctor started me on it a few months ago and at times it makes a subtle difference, that works for me as this progressive disease needs more intervention as it elongates the time frame (8+ years).
Not suggesting this will work but I take a significant number of supplements that I try to fine-tune regularly. Pulmonary PT showed a few things we can do regarding lung exercise and how to focus on breathing.
Stay well…
Steve
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I wish they would tell me no scar tissue after 8 years with this lovely disease.
Stay well…
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@Curt Strickland – would like more info too about the stem cell treatments. Thanks – Steve
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It is good news that multiple trials in 2 or 3 are favorably advancing. I missed a couple of opportunities but Ofev seems to help a little for now + a bunch of supplements…
Stay well…
Steve
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I assume you are in the USA and did that with a prescription? I am 8 years in and holding my own but the cough is increasing. Only been using OTC Robitussin DM which helps – slightly…
Stay well…
Steve
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Hey George – that’s great what you are doing. Is the Inogen % pulse or continuous flow for you?
Steve
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I tried Ofev but almost immediately had diarrhea that was uncontrollable and stopped but I want to try it again lower dose so I can slow this disease some.
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Hey TK – welcome. Nope never mind I know you don’t wanna be here. I first joined this board 6 years ago – there is a lot of good stuff for you so look around. Regards the disability, immediately head on over to your local VA and start the processing for disability or at least get started there. The lungs are a hot issue now. It takes time but may help you a lot.
Stay well…
Steve -
Hotels seem to buy from the same supplier and in at least one case guaranteed me a scent-free room – nope. As soon as we get settled into our new digs, I will try making my own soap products because I will know for sure what is in them…
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I used it twice several years ago. First one helped some, not so the second and there are many supplements that are much cheaper that POSSIBLY will help you.
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Keep looking at this NIH site for updates..https://www.clinicaltrials.gov/search?cond=IPF&locStr=USA&country=United%20States&page=11
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I did not keep it but there was another recent article suggesting berberine may help IPF and again there are many types of PF that may or may not benefit from it. I have been taking it for BS but after the article, I increased my dose to 1800 mg per day from 1200mg. What helps most is diet – avoiding inflammatory food, lots of water, exercise, and for me and my house, the only stationary program in the world is our Spiritual walk…
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I started NAD and Sirtuin 1 about 6 months ago as I have been medically on my own in the Philippines 4.5+ years. So now stateside and after 2 exacerbations – 1 very serious; the other mild, I am certain these 2 combined (with a bunch of other stuff) help me. Each of us is different so not a recommendation. Also been taking NAC and Quercetin. My IPF is 7+ years now and I have experienced mild progression according to the stateside doctor. Initial progression was a little faster. I will add healthy healthy diet, water, and watching your weight are significant factors and contribute to your overall stamina.
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I was on my own medically for 4.5 years in the Philippines so I researched a lot of different supplements BUT there are many types of IPF and my type inhalers don’t help – so what helps me may do nothing for you or worse – cause an adverse reaction. At 74.6 years with other issues and over 7 years into IPF I am also willing to experiment on myself but I don’t recommend it…
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After 7 years with IPF and at 74.5 I am medically on my own in the Philippines. Suffered a very serious acute exacerbation and as I slowly – slowly – recovered I started looking at many different supplements. Some help some don’t but each of us is different and may have a different type of PF. So the only consistent thing in my life is our spiritual walk because all else fails.
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Would a sedative or tranquilizer work too?
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From the looks of things this trial is not available in the USA. Can anyone confirm that please? – Steve
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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 -
clinicaltrials.gov lists all of them for the USA and some worldwide. Good luck to you…