Steve Dragoo
Forum Replies Created
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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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Steve Dragoo
MemberMay 14, 2024 at 5:05 pm in reply to: Has anyone here tried herbal treatment before?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 have used both for several years and it just depends on why you want them. Serrapeptase has been around for a long time to help with liver scar tissue and the hope is it can do similar to the lungs – but there is no evidence of that. I started it 5 years ago because of a growing mucus problem and it almost immediately solved most of it. You can NEVER take it close to food or especially other meds as that can be dangerous (meds). Natto is a good blood cleaner and the Japanese have eaten it for centuries as fermented soy or tofu. It is a blood cleaner – not thinner. If you are taking D3 and with K2 most likely you are getting some natto depending on the K2 type. I do take all of those and more because I am on my own medically in the Philippines with IPF. Had it 7 years and doing pretty good at 74.5 years with other issues as we all have.
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Steve Dragoo
MemberOctober 13, 2023 at 12:38 am in reply to: Telomere length and specific genes associated with IPF:If you take a good B vitamin complex, most have B3 which is Nmn. I have followed Sinclair for a while and don’t always find his answers adequate. So on my own I am taking NAD+ and Sirt1 – with my IPF I have seen it help my endurance and strength but it has not improved my O2. I am happy with the results so far and of course, there are many other things I do and lots of different factors/diet/supplements/etc. affect each one of us…
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Would like to and will see if any are still available when we get stateside later this year…
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At 7 years in and 74, I will be flying from the Philippines soon to the US without O2. Should be interesting…
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@jayesim – that was informative. Basically probably ok in a nebulizer but not recommended for an O2 concentrator…
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Hi Sue – sorry for the delay but we had no internet for a few days here in the Philippines. Because I have had IPF 7 years there are many items I have researched and decided what works for me at the moment. I don’t know your situation so a little reluctant to say try this or that. Please PM me and we can discuss this more thoroughly as I am interested in helping and discovering more that will help us with this lovely disease.
Stay well…
Steve -
@Dale Winter
Dale – I know little about the oils other than several papers on the internet. I used them years ago and at the least, they are relaxing but I have noticed things like peppermint, and a treat I like – wasabi peas help open my sinuses so getting something like eucalyptus in my O2 may or may not help open my lungs. I do a fair amount of research regards supplements and take a number but there are some experts on PF News and hope they will add in. Think of it like this: Vicks Vapo-rub was used by every mom in America when I was growing up – for the purpose of opening our lungs when we were sick. It has (or used to) have eucalyptus in it.
I am willing to take risks on supplements and things like this because I have had IPF for 7 years next month and other issues. So I have nothing to lose and for the most part what I have tried and take help – sometimes a lot…
Stay well…
Steve
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@David Bennett
Dave – I have had IPF for almost 7 years (next month) and at 74 other issues too. Also had 2 acute exacerbations the first 1 – almost died; 2nd much milder. Part of that is because I do a lot of research into supplements and am willing to take risks since there is no treatment available here in the Philippines. So after the 2nd flair-up, I started various supplements and they helped. I used to walk our stairs only a few times per day as needed and always used O2 for a few minutes each trip. Now I walk the stairs about 40 times a day, 6 days a week – still use O2 but not every tip. Of course, diet, water, and Spiritual walk are key – especially my Spiritual walk.
What do you know and can share about essential oils?
Stay well…
Steve