PFT Goal's thread. Trying to achieve 60% FEV1.

Anomie

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Risin' up, back on the street
Did my time, took my chances
Went the distance
Now I'm back on my feet
Just a man and his will to survive
 

Incomudrox

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Originally posted by: Anomie Risin' up, back on the street Did my time, took my chances Went the distance Now I'm back on my feet Just a man and his will to survive
Funny you posted this last night I put my facebook status as "going to get my eye of the tiger on" ironically I also live in South Philadelphia... lol.
 

Incomudrox

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

I need to update the first post still, but I am waiting for Ennio to help me out to figure out why the formatting isn't working properly.

Anyhow on to an update:

When I started lifting back in January I could only bench press about 25lbs for 1 set of 12 reps. By the time I was done, I was out of breathe, and my joints hurt the next 3-4 days as well as my muscles. I am now up to doing 3 sets 25,40,55lbs. with 14 reps each. I now only need about a days recovery time, and I just work on a different group of muscles that day. Lifting seems to be one of the best airway clearances I have ever done. I am really excited to do PFT's in March.

On Tuesday I started taking Lipsomal Vitamin C, with a combination of a few other supplements. The aim here is to READ *Potentially* correct my DF508. While because I can't sweat test I won't know for sure but we'll see how things progress. Anyhow two days in, I have noticed a rapid and profound change in sputum color and consistency. It was gone from a darker yellow to a light green. Instead of being chunky and having some air bubbles, it's not "silky smooth" and no air trapping in it. I have noticed some streaking of blood which seems to be semi old, and not fresh, which could be due in part to the fact that vitamin C is a blood thinning agent to an extent.

I have also at the same time started taking a Sulforaphane supplement, in short sulforaphane is responsible for helping the Nrf2 transcriptor which helps with the transport of antioxidants especially gluathione. In CF the Nrf2 has low to no functionality sulforaphane helps boost its activity. It does other things if you are interested in learning more in the mean time you can google about it. It is also what's found in broccoli and especially potent in broccoli sprouts and is known for what's called the broccoli effect in CF. Akron CF center in ohio (i believe it's Akron) is looking to conduct a study into it but has not yet AFAIK.
 
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cfsucks

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

do you have cfrd?
 

Incomudrox

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Originally posted by: cfsucks do you have cfrd?
Not yet, my A1C is 5.7. I need to get a more recent OGTT done though. I do not monitor sugars nor am I supposed to by any doctors order.
 
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cfsucks

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

true, i was just curious as i do and my doctors frown upon me taking any supplements other than weight gainer and small doses of creatine.
 

Incomudrox

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

I'm not sure why they would be worried. Creatine should have no effect on raising sugars, unless lowering is what they are concerned about it's possible but not likely. They may be hesitant about supplements because they probably think they have GH boosters and test boosters which can effect CFRD but you can just make sure you buy ones that don't. Good weight-gainers have little sugar, mine has 7g sugar and the rest are slow release complex carbs.

EDIT: There are also several studies of creatine use in CF as being well tolerated in male and female subjects and showed a positive increase in weight and overall well being even over a plecebo.
 

Ender

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Inhaling an over the counter wound spray seems kinda risky.

Have you heard of Glutathione? Theranaturals sells a buffered form for inhalation. Has worked well for me in the past.

I read about the broccoli compound too. I take a concentrated form of it from vitacost. Curcumin is good for inflamation as well.

Good luck
 
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cfsucks

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Originally posted by: Incomudrox I'm not sure why they would be worried. Creatine should have no effect on raising sugars, unless lowering is what they are concerned about it's possible but not likely. They may be hesitant about supplements because they probably think they have GH boosters and test boosters which can effect CFRD but you can just make sure you buy ones that don't. Good weight-gainers have little sugar, mine has 7g sugar and the rest are slow release complex carbs. EDIT: There are also several studies of creatine use in CF as being well tolerated in male and female subjects and showed a positive increase in weight and overall well being even over a plecebo.

i think they are afraid of kidney damage or putting too much stress on it.
 

Incomudrox

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Originally posted by: Ender Inhaling an over the counter wound spray seems kinda risky. Have you heard of Glutathione? Theranaturals sells a buffered form for inhalation. Has worked well for me in the past. I read about the broccoli compound too. I take a concentrated form of it from vitacost. Curcumin is good for inflamation as well. Good luck
While I can see your standpoint, I would urge you to do some more research. It is Hyocholorous acid, aka the same thing our immune system uses to fight pathogens and is very safe. However as you are saying gluathione is needed when using this to scavenge the Hypochlorous acid. I have heard of Gluathione yes. I know Theranaturals sells a glutathione product to be inhaled but I have not used it. The Lipsomal product I am using has Lipsomal forms Gluathione/Resveratrol/Co-Q-10 and Curciumin in it as well so the absobtion rate is quite high. I am using Jarrow's BroccoMax for Sulforaphane it has 30mg of Sulforaphane which is on par with the Oncology drug that is prescitption and used to treat cancers. Thanks and good luck to you as well.
 

Incomudrox

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Originally posted by: cfsucks Originally posted by: Incomudrox I'm not sure why they would be worried. Creatine should have no effect on raising sugars, unless lowering is what they are concerned about it's possible but not likely. They may be hesitant about supplements because they probably think they have GH boosters and test boosters which can effect CFRD but you can just make sure you buy ones that don't. Good weight-gainers have little sugar, mine has 7g sugar and the rest are slow release complex carbs. EDIT: There are also several studies of creatine use in CF as being well tolerated in male and female subjects and showed a positive increase in weight and overall well being even over a plecebo. i think they are afraid of kidney damage or putting too much stress on it.
With the Creatine I can see that yes, there are forms of creatine out there that are certified "safe" for kidneys monohydrate is not one of those forms. There are very few. The creatine I am using is certified NSF. Keep a lot of water down and Cranberry juice and should be good. I'm not trying to sway you just stating what I know. :)
 

lilmac7

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

This is interesting and I will be following. I too started a different brand of the Puracyn about a week now and I can say that it made a big difference within a couple days. I was doing oral antibiotics for a chest infection pretty much every couple months and not shaking it properly so would come right back and recently did about 3 weeks of a couple antibiotics with barely any effect on the chest infection and then started the Puracyn right after and within a couple days the amount of coughing got less, the amount of mucus I was bringing up got less, I was able to sleep a full night without bouts of coughing waking me up and the color and consistency of the mucus improved as well. I figured I'd give it a shot after many bouts of just not being able to properly shake the infection and I didn't want to do IVs due to work and just for it to be last resort - which I was about to just throw in the towel and do them but then came across this stuff on the internet and decided to give it a shot.

With your PFTs so low I don't know how you can get by on just the Ventolin inhaler 2 puffs twice a day. I'd be just about choking and passing out with that regimen. I'm wondering if it's the Advair that helps with that? I may suggest me trying it with my Doc to see if it can help me as I don't take any steroid for inflamation. Just nebulize Ventolin and Atrovent
 

Incomudrox

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Originally posted by: lilmac7 This is interesting and I will be following. I too started a different brand of the Puracyn about a week now and I can say that it made a big difference within a couple days. I was doing oral antibiotics for a chest infection pretty much every couple months and not shaking it properly so would come right back and recently did about 3 weeks of a couple antibiotics with barely any effect on the chest infection and then started the Puracyn right after and within a couple days the amount of coughing got less, the amount of mucus I was bringing up got less, I was able to sleep a full night without bouts of coughing waking me up and the color and consistency of the mucus improved as well. I figured I'd give it a shot after many bouts of just not being able to properly shake the infection and I didn't want to do IVs due to work and just for it to be last resort - which I was about to just throw in the towel and do them but then came across this stuff on the internet and decided to give it a shot. With your PFTs so low I don't know how you can get by on just the Ventolin inhaler 2 puffs twice a day. I'd be just about choking and passing out with that regimen. I'm wondering if it's the Advair that helps with that? I may suggest me trying it with my Doc to see if it can help me as I don't take any steroid for inflamation. Just nebulize Ventolin and Atrovent
Great to hear I am not alone. I know there are others but they don't want their names mentioned so I won't. As far as the advair its also a long-acting bronchodiolator so it is probably helping me with being on 2 puffs twice daily of Ventolin, however I must admit, I only recently started using it again due to running out of another natural remedy I was using. There was a peroid for two months were I used Ventolin two puffs ONCE. I am hoping to get back to the point of not having to use it right now. It's there as a back up if I need it though. Do you know Jonny Pop Simpson by chance? I've seen your picture before in your signature it's not there now but you are quit impressive. Theres a few on this board that are bodybuilders and have seen amazing results. I'm not there yet but I'm working my way there I hope.


Update for everyone else:
The streaking I had mentioned has gone away and my mucus is the most beautiful color I have ever seen in be in longer than I can remember, aside from using the silver where it just disappeared all together. When using the silver and mucus did eventually start to come back it was still a nasty CF looking ball of mucus. This is well much different, I can't get over the change in such a short time. I get excited to look at it. Also this maybe gross to some of you but, if you have ever smelled dried up mucus its quite repulsive yes probably because of some of the infection in it this is only a speculative guess rigt here. In any event I happened to save some from yesterday to see if the smell is any different and it does not smell repulsive at all or gross. What that means entirely I am not 100% sure but I'll take that change as well because it is probably a good one.
 

Anomie

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

I'm thinking about starting a strict regimen to try to reverse my daughters bronchiectasis she acquired due to her mis-diagnosis. Do you know of anything that can return elasticity to the bronchi. I read calcium flouride but couldn't find much information about it. What exactly does the colloidial silver do? I've read that reversibilty is possible when its still in the cylindrical (mild) stage but that it just takes a while. Any thoughts on the matter would be greatly appreciated.

Thanks and best of luck!
 

Incomudrox

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Originally posted by: Anomie I'm thinking about starting a strict regimen to try to reverse my daughters bronchiectasis she acquired due to her mis-diagnosis. Do you know of anything that can return elasticity to the bronchi. I read calcium flouride but couldn't find much information about it. What exactly does the colloidial silver do? I've read that reversibilty is possible when its still in the cylindrical (mild) stage but that it just takes a while. Any thoughts on the matter would be greatly appreciated. Thanks and best of luck!

Hyaluronic Acid is huge in helping elactistiy of the lungs and tissue. You may look into Magnesium summplentation as people with CF are sometimes low with it, magnesium helps the body to make Hyaluronic acid. You may also ask your doctor about HYANEB it's HTS with HA (Hyaluronic Acid) in it. It's given to people who have a hard time tolerating regular HTS, generally older CFers that have more stiff airways (ironically because they didn't have good HA.) Sweet potato and Yukka i believe are good sources of HA. To help the body process HA you should have her eating greens, broccoli especailly. Sulforaphane helps to process HA in the body. It also has lots of other benifits. We actually mentioned Sulforaphane a few posts up and supplimentation through aftermarket products. I use a Jarrow Product called BroccoMax, it is a pill but could be opened like an enzyme if your daughter can not swallow pills yet. It's basically equal to eating a lot of broccoli sprouts. Has nothing else in it besides some type of preserve I think. You can do about no harm with this, you can do some reading on your own. Just google NIH Sulforaphane Cystic Fibrosis...etc in a few combinitation or just read about sulforaphane and other illnesses as well. It also helps transport of antioxidens and other things that the Nrf2 transcriptor handles as well. There is also a LOOSE connection to it being able to fix some mutation protein folding process such as DF508. If anything it's also a very good healthy cell growth promoter.

EDIT: To answer the other question about Colloidal Silver, it's electrolosized silver ions suspsended in water. You can drink it, inhale it etc... It's used traditionally as an antibiotic. It's very hard for Bacteria to become resistant as they can not mutate against it. The silver ion in short travels into the Bacterial cell and "jams" the enzyme bacteria use to digest oxygen... and then of course without oxygen the bacteria dies the end! There should be a fair amount of information in the thread linked at the top about it.

I hope this helps you can also PM me if you want anytime.
 
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BikerEd

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Off the science part of it and in reference to you "eye of the tiger " when you hit 60, let me know; I'll drive down from Kutztown to run up the steps of the arts museum with ya, or maybe I'll just watch;)
 

Liutka

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Thank you for sharing the information and the result Incomudrox

I am following your story always. :)

Nice to hear what you did not stop to fight and search for the alternative decisions.

Keep going and good luck :)
 

lilmac7

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Originally posted by: Incomudrox Great to hear I am not alone. I know there are others but they don't want their names mentioned so I won't. As far as the advair its also a long-acting bronchodiolator so it is probably helping me with being on 2 puffs twice daily of Ventolin, however I must admit, I only recently started using it again due to running out of another natural remedy I was using. There was a peroid for two months were I used Ventolin two puffs ONCE. I am hoping to get back to the point of not having to use it right now. It's there as a back up if I need it though. Do you know Jonny Pop Simpson by chance? I've seen your picture before in your signature it's not there now but you are quit impressive. Theres a few on this board that are bodybuilders and have seen amazing results. I'm not there yet but I'm working my way there I hope.
No I don't know who that is. I also see mention of coloidal silver, can you PM me some info on it please if you are still using it and found it to work, like which you use and and any other info. I think I'd like to give it a try too but dunno where to start or get it from. Thanks and good luck - will have to look into where my picture went...
 

Incomudrox

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*NEW* PFT Goal's thread. Trying to hit that magic 60% FEV1.

Originally posted by: lilmac7 Originally posted by: Incomudrox Great to hear I am not alone. I know there are others but they don't want their names mentioned so I won't. As far as the advair its also a long-acting bronchodiolator so it is probably helping me with being on 2 puffs twice daily of Ventolin, however I must admit, I only recently started using it again due to running out of another natural remedy I was using. There was a peroid for two months were I used Ventolin two puffs ONCE. I am hoping to get back to the point of not having to use it right now. It's there as a back up if I need it though. Do you know Jonny Pop Simpson by chance? I've seen your picture before in your signature it's not there now but you are quit impressive. Theres a few on this board that are bodybuilders and have seen amazing results. I'm not there yet but I'm working my way there I hope. No I don't know who that is. I also see mention of coloidal silver, can you PM me some info on it please if you are still using it and found it to work, like which you use and and any other info. I think I'd like to give it a try too but dunno where to start or get it from. Thanks and good luck - will have to look into where my picture went...
I will send you a PM later tonight that's not a problem at all!
Originally posted by: Liutka Thank you for sharing the information and the result Incomudrox I am following your story always. <img src=""> Nice to hear what you did not stop to fight and search for the alternative decisions. Keep going and good luck <img src="">
Thanks Liutka, it's rare that I ever give up! CF doesn't rest so neither can I!

Originally posted by: BikerEd Off the science part of it and in reference to you "eye of the tiger " when you hit 60, let me know; I'll drive down from Kutztown to run up the steps of the arts museum with ya, or maybe I'll just watch<img src="">
Sounds good Ed! Then after that we can go get a cheesesteak! Hahaha. I am going to make this happen so you either, better start training or get a video camera and record me doing it!
 
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