Steve Dragoo
Forum Replies Created
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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 -
Hi Jayme,
Diagnosed October 2016 and I am only on various supplements and O2 at night usually and sometimes after I climb stairs for a minute, at 74, and other issues that is ok for me. NAC is good but please look at other forums where other solid supplement recommendations are made such as zinc – the right type, EGCG, D3, and K2 with M7. Because I have PAH I take others as well such as Coenzyme Q10, and Alpha lipoic acid, will be adding melatonin soon as it is a better antioxidant than NAC which I really like.
Stopped mucus with serrapeptase 5 years ago BUT A BIG CAUTION – never take it close to other pills or food as it sees them as dead protein and that is what it dissolves. Others I take too but we are all different with this lovely disease and other medical/metabolic history.
Success and welcome to you…
Steve -
@jbrollo
Hey James,
I have used NAC for a few years because an internal medicine/pulmonologist/professor at Loma Linda on the daily front lines with covid highly recommends it for energy and it is essential for making glutathione among several other benefits.
Stay well,
Steve -
@laurie1960
Hi Laurie,
Welcome to PF News and forums. Explore around and you will see lots of ideas and different stages of various clinical trials that may help you.
Since life is progressive, so is IPF. I was originally diagnosed in October 2016 and am now 74 with other issues. But I keep looking at lots of different supplements and breathing/PT – that may be something to bring up with your pulmonologist, also ask about doing a sleep test and if you have GERD; apnea and GERD can affect IPF negatively. Stay well hydrated – water – stop processed foods, I am about 90% vegan and know it has helped me, exercise as much as possible that will carry you some when times get tough.
As I age I recognize our spiritual walk is imperative. Some of my favorite verses are: ”Who by worrying can add a single hour to your life?” ”Since you cannot do this single thing, why worry about the rest?” Much more to the story. – Interested?
Stay well…
Steve -
@tinagand
Hi Tina,
It sounds like he may have had a flair-up (acute exacerbation) they can be very difficult and generally you come out of it worse for the wear but still viable. I have had 2. The first was very bad and I did not think I would make it and struggled badly because I could not catch my breath since my heart was racing. That caused agitation but also the inability to do anything including eat for several weeks.
So if this is similar, he may well pull through it ok. The pulmonologist should be able to provide insight into what stage he is in. Also, you mentioned PF and that means there is a known cause for his – mine not so. The root cause is a major clue what you might expect and when.
Hope this helps…
Steve -
@caneelbay1
Hey John,
Did you ever try sodium pyruvate? If so PM the link – I can’t find it. I emailed EmphyCorp about N 115 Nasal Spray and searched the web – there are no updates for it and that seems like a strange radio silence.
Stay well…
Steve -
@caneelbay1, @kristina
Hi John and Kristina,
Almost 4 years from the first post I would love to know more about sodium pyruvate and its potential efficacy. I see a report that indicates it can be a tissue irritant. If you make your own nebulizer, what would you use, John? Where will you buy the sodium pyruvate?
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 -
@salgal
Hi Sally,
We have a lot in common – well sorta. Contracted IPF at 67, now just 74 in May. Had a similar exacerbation and did not eat for almost 6 weeks. I don’t recommend that as a weight loss program. Did not go to the hospital as over here in the Philippines IPF is very rare so my wife and stepson ran around all over the city getting those huge O2 bottles and I could finish 1 in about 12 – 16 hours. Could not even shower it was so bad and took more than a year to ”recover” (I use that term loosely). The 2nd event was just a few months ago and much much milder – was mostly able to still work online.
We will be flying stateside later this year and I am concerned about my O2 on the plane without any support for the very long journey. But no one said getting old was easy or for the timid and I will have to make the journey regardless.
My faith and spiritual walk will support me through these trials – regardless of the result.
Stay well,
Steve -
@adele
Hey Adele,
That’s interesting. I have seen O2 tents (mini-hyperbolic chambers) on Amazon from time to time but have no idea of their usefulness.
Stay well,
Steve -
@laurie1960
Yes, degrading chronic with ups and downs is a good way to understand the physicality of IPF, especially acute exacerbations. But not to discourage you or anyone – we have a fight on our hands and I hear the bell ringing. Hope you(s) do too…
Steve
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@phyllispolly
Hi Polly,
That’s good news. Where did you see this? Thanks.
Stay well…
Steve -
@kimm34gmail-com
That’s great Kim… I am ordering today as they ship to the Philippines many times for free. Sure update us when after your next doctor talk…
Stay well…
Steve -
@kimm34gmail-com
Hi Kim,
Thanks for the response. I did see Haritake. What dosage per day? The Cona Nature Organic recommends 3 pills per day and that would be 2250 mg. Is that what you are taking? How did your tests go last February?
I served in cardiology in the USN (enlisted) and take a lot of supplements daily here in the Philippines.
Thanks
Stay well…
Steve -
@kimm34gmail-com
Hi Kim,
How much and what form of Haritaki are you taking? Please let me know how long you have had IPF and what age group you are in.
I am 74 with IPF for 6.7 years. Been taking metformin for diabetes for 12 years and have no insight if it helps or has slowed the progression of this lovely disease.
Thanks!
Stay well…
Steve -
@cecilzlotnick
Hi Cecil,
Not sure if anyone answered you. I have been taking Serrapeptase for almost 5 years. But I strongly tell you NEVER take it close to any other pills or food. It dissolves those faster than normal. That can be really bad news with other pills (ask me how I know) and a waste if taken with food.
I slowly ramped up to 840,000 – 960,000 SU’s in 2 doses. Since I eat twice a day figuring out when to take it is no problem. I recommend an enteric coat so stomach acid doesn’t dissolve it. Usually, I drink a lot of water so I know it goes to my small intestine somewhat.
I started it to slow/stop mucus initially and it worked well for that. Rather it reduces scar tissue or not in the lungs is unknown but it has been used for the liver and external scarring for decades.
You might want to look into Lumbrokinase and Nattokinase – which I take but be cautious. Lumbro is similar to Serra so I take it by itself usually.
Stay well…
Steve -
@shahnn
Hi Neha,
I just saw the study going on with serrapeptase. Do you have any results to share? Please use my screen name (like yours above) so I will get notified.
stay well…
Steve