Steve Dragoo
Forum Replies Created
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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 -
@jofac-ohandlin
Hi Joe,
I just posted a long answer here but it looks like it disappeared. Please let me know if you can see it. Otherwise, I will try to recreate it for you.
Stay well…
Steve -
@jofac-ohandlin
Yes I consider the placebo effect on all I take but that would wear off over time as ”reality” sets in.
Having worked in medical in the USN, I try to be acutely aware of mental/physical changes but at best those will be subjective for several reasons. The progressiveness of IPF seems to slowly affect the brain and of course, can stimulate some fear or remorse. I wade through those as fast as possible.
I am currently in an exacerbation, too. Lovely aren’t they? The first one 2.5 years ago was extreme and took me well over 6 months to recover – never fully.
With metformin, I cannot speak to any impact on IPF, perhaps it has minusculely slowed the progression but I have no real feeling or evidence either way.
I was developing a mucus problem 4.5 years ago but discovered Serrapeptase – it almost completely has eliminated the problem except if sick or in an exacerbation. If you are considering it, there are very important cautions when using it. NEVER and I mean NEVER take it anywhere close to other medications (I wait at least 3 hours and prefer 4) because it dissolves protein (pills/food). Did that too close to Niacin once – wish I hadn’t done that. Same for close to food as it is wasted dissolving food instead of going into the small intestine where it is more easily absorbed.
Regards the Aspirin White Paper – I did not keep it but I think the same or very similar to the original was what you read. You can ask an administrator on the forums here for help finding it.
Stay well…
Steve -
@fmarzetta
Hi Frank,
What is your heart rate? PAH cause my heart to work hard which creates shortness of breath sometimes. Also, O2 bottles go to 11+ L, and try wearing a face mask.
Stay well.
Steve -
@jofac-ohandlin
Hi Joe,
I’ve been taking baby aspirin enteric coated for a very long time. After a white paper was published here sometime last year, I increased to 3 baby aspirin 2x with no noticeable side effects and I take many other supplements as well.
Stay well…
Steve -
@charlene-marshall
Hi Friend,
Glad to see you here. Fortunately, I am not on O2 other than at night and on the rare occasion, I need it wandering at home. Sometimes walking I wish I had one but that is mostly my heart rate jumping a lot – don’t walk far anymore either.
Somewhat my fear is the very long flight from the Philippines back to the USA soon )we hope) so I may add in an extra stop or two just to recover.
Thanks for the list – some good ones there for the intermediate need I think..
Stay well,
Steve -
@charlene-marshall
Hello Friend,
I think of you every day and know winter is a struggle – for me, it is usually February as I get cabin fever and want to be outside even sleeping in the snow as I did when younger. On the other hand, every time I show my wife a picture of some beautiful snow-covered bucolic landscape her comment is, ”I will die!”
Gloria Gaither wrote a song back in the late 70s” Because He lives, I can live tomorrow” – I carry that thought with me every day and for you too…
Stay well…
Steve -
Samuel,
You are not alone in this journey. Be blessed and reassured you will meet again.
Stay well…
Steve -
@michael-lamkin
Hi Michael,
A number of pharmacies will provide metformin at a love cost probably about the same as the co-pay but I do not know if they require a prescription.
I have used metformin for 12 years and can’t tell if it has helped my IPF or not. I do use a bucket of supplements daily however.
Stay well…
Steve -
@jaimeluciano
Hi Jaime,
I had phlegm but nearly stopped it by using Serrapeptase. Started it over 4 years ago and take 720,000 SU nightly on an EMPTY stomach and NO other meds for 3 hours on either side. You can start at 480,000 SU.
Serrapeptase sees pills as dead protein, it dissolves them faster. Did that once with niacin – wish I hadn’t. Easy to find pure SU on Amazon.
Also, take EGCG 600mg in the morning and green tea at midday.
Just started practicing what deep divers do before diving and even though I cannot hold my breath long the added pressure makes me clear out stuff. I do this after a shower and turn up the O2 before I start. Try to do 5 reps adding just 5 or 10 seconds to each.
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