[Maynard James Keller]

Another symptomatic (as opposed to curative) approach I’m considering is Inogen’s relatively new TAV (Tidal Assist Ventilation) device which purports to deliver more oxygen to the lungs per liter of supplemental oxygen.

Again, this wouldn’t make you live any longer but maybe does have some promise of helping you live better while you are still around.

Has anyone tried this?

Description and discussion (from vendor)

Fairly extensive:

https://www.inogen.com/blog/what-is-tav/

Includes short reference list

– – – –

Portable system:

Description and brief report of clinical study

https://www.inogen.com/product/inogen-tav-tidal-assist-ventilator-for-use-with-portable-refillable-oxygen-tanks/

– – – –

Home concentrator system:

Description and same brief report of clinical study

https://www.inogen.com/product/inogen-tav-tidal-assist-ventilator-with-nidek-5-stationary-oxygen-concentrator-for-home-use/

$1599 – System for use with portable tanks (fairly frequent special cannula replacement

$2848 – Use with home compressor (includes 5L compressor)

(fairly frequent special cannula replacement)

[Maynard James Keller]

I don’t think the maker or the article reported by pulmonary fibrosis news is claiming that n115 is curative in any way.

Rather the claim is symptom relief without improving the underlying disease process. So no one should expect any extended lifespan, that best and improved quality of life while going through the course of the disease.

To me that leaves the question of what are the possible downsides, i.e., could the use be harmful to patients.

At this phase of my disease, if it doesn’t seem like it might shorten my remaining lifespan I might risk some non-lethal side effects.

So I concur with another poster that if justified by the evidence steps should be taken to seek fast track FDA clearance for use on a provisional basis or for compassionate or “right to try” use.

 

 

[Maynard James Keller]

Life Extension has a tea product high in EGCG, which they describe as follows:

Mega Green Tea Extract

Overview

Green tea (Camellia sinensis) contains health-promoting polyphenol compounds such as epigallocatechin-3-gallate (EGCG), a powerful anti-aging phytonutrient that has been the subject of extensive scientific research. Our Mega Green Tea Extract provides more of these potent compounds than the equivalent of several cups of green tea in a lightly caffeinated supplement.

Each capsule of Mega Green Tea Extract provides 725 mg of green tea extract, standardized to 98 percent polyphenols.

* * *

I’ve been taking the product for years, but not in this amount. I’m increasing the amount now.

I I’ve been using Life Extension products for years in regard them as an ethical company. They also sponsor quite a bit of research.

 

[Maynard James Keller]

I can’t say it helps me or not. I began taking it, berberine, and a vitamin K complex after a heart attack as an alternative to being on Plavix back in 2016. (I’ve just doubled my dose to 4000 FU based on my reading here.)

I’m taking Esbriet and Metformin (based on a preclinical study of mice and IPF), plus a number of supplements I have read might help, e.g., Rosavin, AMPK activator, and have just added serrapeptase and DHEA.

But I’m all in on supplements and have been for decades (partly because of past abuse of my body (e.g., smoking), heart disease, and not the best nutritional habits), and keep evolving my program.

I’ve also been taking Ayurvedic formulas for IPF, recommended by a doctor in India, but I’m focusing more on IPF research now.

So I also take a number of anti-aging targeted supplements such as NAD+, and various Life Extension’s formulas called Mitochondrial Energy Optimizer,  Senolytic Activator, Gerroprotect AI, and more (the ingredients are on their site).

And well, a host of others for general health which I hope might help.

I’m 5 years into my IPF and had been stable at a moderate level for almost 2 years, but just took a sudden step downward, just when I started to feel a little comfortable about it.

That’s a lot of mixed information, but I hope it’s useful to someone.

[Maynard James Keller]

I’ve been taking 2000 FU of Nattokinase OD for several years – for reasons having to do with being a cardiac bypass patient, and I hadn’t read about its application to IPF until recently.

Now that I’ve added serrapeptase for IPF (40,000 three times a day as per advice in this forum), I’m thinking of doubling the nattokinase. However, that’s not based on any real knowledge, just a semi-educated guess.

[Maynard James Keller]

@danielt

 

I take 100mg, 2000 FU once a day.

I also take Rhodalia (rosavin), NAC, NAD+, and a host of other supplements.

I had been stable for a year-and-a-half until recently. I’m 5 years into my diagnosis.

My previous dose of nattokinase had included red rice yeast, but the supplement company doesn’t have that product anymore.  Does anyone think I should be looking for it?

I’ll be starting serrapeptase later this week when it arrives. I’m not sure what dose I should take either.

On the RX side I take Esbriet (three years), and started Metformin some months ago.

Both of these alter my digestion and sense of taste, so I dropped the Metformin about 2 months before a recent decline, and I since started it again.