steve-dragoo
Forum Replies Created
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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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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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@lenoxx
Hi Joyce,
I have been taking serrapeptase for mucous and have very little even though my IPF is getting worse. You might want to look at it but there are some high cautions I will mention. Never – never take it with other pills and the same for food for about 3 hours on either side. It dissolves protein and sees pills that way – not good, I know – the hard way. It is measured in SU and I take 720,000 SU’s daily at night. I probably could cut that in half for the mucous but some notes ”suggest” it might help scar tissue. Be cautious…
Stay well…
Steve -
@everyone
Astra Zeneca had intended to complete the trial in June 2023 – looking for an update soon…
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Hi Jayme,
I was diagnosed October 2016 with ILD and confirmed May 2018 as IPF after I returned stateside. Diet, water, exercise (a little forced if necessary), proper rest, other supplements, Pulmonary PT, and spiritual walk add up to be a significant arsenal against this disease.
Steve
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@jgenesio
Hey Jerry,
I took EGCG a few years ago and stopped after a few months because I noticed no difference. I started it again about 2 years ago and it has helped. Green tea has lots of benefits on its own, EGCG being the concentrate.
Regards weight loss I take 6 EGCG per day and it has had no effect on my weight. So it must affect everyone in that way a little differently.
Stay well,
Steve -
@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 -
@kathywhitehead
Hi Kathy,
Yes, our spiritual walk is primary. I was raised LDS and stopped going in my teen. Was baptized on 10/12/2002 as SDA – finished medical missionary training in the Philippines with my wife and look forward to being on the spiritual frontline back in the USA.
Attitude is a lot of our battle and roughly stated I do not see anything about fairness on my birth certificate…
Blessings. Stay well…
Steve -
@tonyhernandez
Hey Tony,
A lot of similarity – 74 and almost 7 years in, living in the Philippines (been to Puerto Rico a few times) on no meds except a bucket of supplements as IPF and PAH are very rare here. Took 35 trips up and down the stairs today. Exercise, diet, and water are key.
Stay well…
Steve -
@caneelbay1
Hey John,
Most I named above to Jayme but the dosage and timing – what to combo with and what not to combo with is a little complicated. Maybe we can talk? I am adding NAD+ and SIRT1 to zinc (the right kind) and taking magnesium away from zinc as zinc negates the magnesium (again the right kind – there are several varieties and each acts differently). Others are Haritaki, nattokinase, B complex, and EGCG. But again dosage, how and when are complicated…
Steve
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@caneelbay1
Hey John,
Glad to hear you came through that harsh learning experience. I agree with you managing CO2 is essential to faster recovery times. I do not know exactly what has happened to me the past 3 weeks but I have gained strength and able to walk our stairs 30 times per day. A couple of months ago I would not have attempted more than 5 or 6.
I keep modifying the supplements and know the current combo works well. What I believe has happened is my PAH has relaxed and thereby so has my heart rate. O2 recovers fast on each trip up and down, and so does the heart rate. BP is great – yesterday 113/64.
Keep experimenting – I have to since I am still in the Philippines and IPF is almost unheard of…
Stay well…
Steve -
@vincestravino
Hi Vince,
Did you need a prescription to get it past customs?
Stay well…
Steve