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

[Incomudrox]

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

Update:

Mucus product is at a new low, similar to the "peak" of colloidal silver I had. Nasal drainage has subsided, if I have any it's completely clear. I saw some old blood, probably from the streaking, it was a darker color. Total mucus production for 2/20/12 was less than 5ml's. I can still feel there is some junk down there so I'm going to focus the next couple of days on getting it out armed with some weight lifting, my stethoscope, and as much HTS as I can tolerate without bleeding.

 

[markinohio]

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

I'm just going to throw this out there, but are you concerned this might be overkill. You seem to be bombarding your lungs with many treatments at the same time. It appears you've done quite a bit of research about the medicines and supplements you are taking. Are you worried about long term affects of all these medications? You seem to be looking for a quick fix to repair your damaged lungs. I'm by no means a medical expert, just a guy who has lived 43 years with this dreaded disease. I hope you achieve the goals you are looking for, share the results and we can all live a longer happier life.

I don't mean to sound negative, I'm just concerned for a fellow CFer. Good luck.
Mark

 

[Incomudrox]

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

Originally posted by: markinohio I'm just going to throw this out there, but are you concerned this might be overkill. You seem to be bombarding your lungs with many treatments at the same time. It appears you've done quite a bit of research about the medicines and supplements you are taking. Are you worried about long term affects of all these medications? You seem to be looking for a quick fix to repair your damaged lungs. I'm by no means a medical expert, just a guy who has lived 43 years with this dreaded disease. I hope you achieve the goals you are looking for, share the results and we can all live a longer happier life. I don't mean to sound negative, I'm just concerned for a fellow CFer. Good luck. Mark
I can understand what you are saying Mark. To clarify I have done a lot of research, some of these things that I am just starting to impliment now I have been researching for over 8 months day after day, from the minute I quit work to focus on my health last August. To ask me if I am worried about the long term effects of things that are most natural or GRAS I'd say no not at all. I have researched the possible side-effects of everything. Now if you asked me am I worried about the long term side-effects of actual approved CF drugs, I will tell you yes without a doubt! I already have moderate heaing loss from Tobra, and have had other negative effects from things.
I have been lucky not to of had kidney or liver problems, but there are a fair amount of CFers (a lot that don't post here and are young) that have liver and kidney issues from toxic "approved" drugs. Just because drugs are approved doesn't mean they are safe, it just means they didn't kill massive amounts of test subjects during the trials. I'm sure you like I have read the warnings and side-effects of many of the drugs you and I take/have taken. The natural things I'm doing have NOTHING in comparison to those. I'd say prospectivly the most dangerous natural thing I have done was the silver and I didn't have any negative effects from it. I say that only because it's a metal that is not an essential metal to the body.
By all means to everyone else reading, if I have conveyed that I think I am going to come across a "quick fix" believe that, this is farthest from the truth. What takes 22 years worth to create in damage can not be undone in a matter of days or weeks. Except by the hand of God. Rather I expect any gains I do see to take months to years in the full spectrum of things.
I appreciate your concern as it has also given me a chance to address some of the things others may have been also wondering themselves but didn't nessicarily want to ask. Thanks! Best of luck to you and may you live many more years!

 

[Incomudrox]

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

Little update: I had been feeling really tired and just not right started running a fever yesterday. Called the doc they bumped my appointment to today... lung function is actually down slightly I'm going to be packing my stuff and heading back to the hospital in about an hour. Diagnosis is that I got the flu.... and the saga continues.........

 

[giantsfan91]

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

Good luck man! Wishing you the best in there

 

[imported_Momto2]

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

ICK. Good luck to you Incomudrox, hope they get whatever it is under control soon. I hope you find a magic combo that improves your health. I've spent decades messing around with meds/no meds, different stuff, eastern medicine, etc. I have come away with a much healthier respect for my body and a better understanding for its language. When I dont listen, I get a whuppin'. I dont think I would take the same meds and approach as you, since I am in a different body, but I do admire your courage and intelligence to strike out on your own and give it a try. Too many people blindly follow what they are told by medical docs, even when its total BS and they KNOW its not helping and even hurting their situation. I totally of the feeling of "better to have tried and not succeeded than to never have tried". Best of luck!! (and in the short term, feel better and get the **** outta the hospital soon!!)

 

[Incomudrox]

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

Originally posted by: Momto2 ICK. Good luck to you Incomudrox, hope they get whatever it is under control soon. I hope you find a magic combo that improves your health. I've spent decades messing around with meds/no meds, different stuff, eastern medicine, etc. I have come away with a much healthier respect for my body and a better understanding for its language. When I dont listen, I get a whuppin'. I dont think I would take the same meds and approach as you, since I am in a different body, but I do admire your courage and intelligence to strike out on your own and give it a try. Too many people blindly follow what they are told by medical docs, even when its total BS and they KNOW its not helping and even hurting their situation. I totally of the feeling of "better to have tried and not succeeded than to never have tried". Best of luck!! (and in the short term, feel better and get the **** outta the hospital soon!!)
Thanks, I must say only receently in the past year have I searched for answers elsewhere as the medical system was failing me so to speak I had been going in for admissions every 4-5 months for years, and I started not accepting it and trying different things after my admission last april and low and behold went twice the distance. While I do see it as being not fun to be here, I can admit when I need help which I think is what you are trying to say. I'm hoping that this admission can possibly bring some good only time will tell so I sit and wait! It kills me that I can't lift weights in here though. Sigh!

 

[BikerEd]

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

Dude. That sucks had I known earlier I woulda dropped ya off some decent food, cause I highly doubt the food at UPENN got better. Good luck get better and get out soon.

 

[Incomudrox]

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

Originally posted by: BikerEd Dude. That sucks had I known earlier I woulda dropped ya off some decent food, cause I highly doubt the food at UPENN got better. Good luck get better and get out soon.
Dear Ed,

The food is still horrible.

-Frank... LOL

Yeah it's pretty bad no doubt. I'll try to be as speedy as possible.

 

[Incomudrox]

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

Getting sprung from the joint today! Gotta get packing my things soon then home to do 1 more week of IV's!

 

[Incomudrox]

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

To those who are following this I found out something interesting today.

When I was admitted to the hospital on 2/28 the culture results where moderate MSSA and FEW PA!!!! Hopefully this course of Zosyn and Tobra will completely knock out the PA!

 

[scarecrow]

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

Hang in there Man. Seems like you are doing a lot of things right and doing a lot of research while still being open to try new things. Whatever happens, I believe that that is the only way to live, and I mean that more ways than one.I am almost 56 and like most CFrs that old I have been told since I was diagnosed that I wouldn't live much longer. But the pediatrician that I went to also told my parents that the best chance I had was to get as much exercise as possible as often as possible. They went out and bought several horses that were my responsibility and here I still am 49 years later. It seems like I have had it a lot easier than most w/ CF but that may be from taking a different approach or just good luck. Either way, while I have always considered doctors a necessary evil I have never been willing to do what they said just because they were doctors. Like you, some of my bright ideas have worked out better than others, but don't ever give up.

 

[Incomudrox]

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

Originally posted by: scarecrow Hang in there Man. Seems like you are doing a lot of things right and doing a lot of research while still being open to try new things. Whatever happens, I believe that that is the only way to live, and I mean that more ways than one.I am almost 56 and like most CFrs that old I have been told since I was diagnosed that I wouldn't live much longer. But the pediatrician that I went to also told my parents that the best chance I had was to get as much exercise as possible as often as possible. They went out and bought several horses that were my responsibility and here I still am 49 years later. It seems like I have had it a lot easier than most w/ CF but that may be from taking a different approach or just good luck. Either way, while I have always considered doctors a necessary evil I have never been willing to do what they said just because they were doctors. Like you, some of my bright ideas have worked out better than others, but don't ever give up.

Thank you very much! Keep on keeping on yourself man!

 

[Incomudrox]

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

 

[Incomudrox]

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

For those following this:

Today was my last dose of Zosyn @ 8am. PICC line was pulled @ 9am. o2 are satting at 97% on room air a number which has not been seen on almost 2-3 years. Doesn't mean I haven't been that I just haven't seen it. I seem to have gotten past the Detox phase of the Symplex C mixture (was having extreme sleepyness all the time.) Energy level is great. Waiting on my second mutation to come back - I am having the testing done by John Hopkins for the research study for CFTR2 project. So there is some paper work involved. I'll be getting back in the gym tomorrow and adding some cardio into the mix to my working out to approach more of a HIT style workout (similar to what is done in pulmonary rehab IIRC).

I am going to have my Testosterone levels retested at the end of this month as they were on the low side of normal in patient but we want to see what happens when I'm a little better. Blood work is almost picture perfect but I need to get follow up labs done. 3/8/12 WBC was 11.2 so right on the edge of normal limit we just want to make sure it keeps coming down. I am going back on Puracyn and Inhaled Tobi this month and have Cayston ready for next month. Hoping to erradicate PA (I'm really close according to cultures). Also have a course of Bactrim for MSSA.

 

[Liutka]

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

Nice! Go on!

 

[cfsucks]

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

keep at it dude!

 

[Incomudrox]

Thanks guys! A little update: Symplex-C - I am coming to the end of 30 days of use.. however NOT consecutive due to being in the hospital. So I will continue to evaluate it's use. I will most likely switch to a buying the Liposomal Vitamin C - Liposomal Curcumin, and Liposomal Resveratrol. I do see effects from this immediately but they have no yet translated into long term effects I believe are potential of it so I will trial for another 30 days. I am cutting out the Coq10 because I believe it makes me very sleepy. While CoQ10 has benefits in the body it is not known to be a potentiator of CFTR like Vitamin C/Resveratrol or Curcumin so I will cut it out of the mixture which will also cut down on overall cost to value ratio. The Glutathione I will be using but in another form. I am re-adding Haritaki (Terminalia Chebula) which is an Ayurvedic fruit using in India to treat many ailments. It has strong action against gram negative and gram positive bacteria and has been proven (in-vitro) to level bio-films in PA (strains taken from CF patients). I had been taking it before but in a mixture with other Ayurvedic herbs. I wrote it off because I didn't notice much. Fast-forward to now I looked at my sputum cultures all at once in-stead of individually and saw a bigger picture. When I was taking this mixture before my PA changed from mucoid to non-mucoid. So isolating the Haritaki I am going to be taking a more potent dose of it daily and see if I get the same results as I did before.
EDIT: To better aid the community who is interested in alternative medicine; I will probably not start this until after 4/11 (my next appointment) as hopes to get a more controlled expieriment. However if I start to feel junky I am going to jump on it!
I will be starting inhaled glutathione (thank you dramamama) as soon as my order from Theranaturals comes in (hoping for this week). This was I will be able to get it right where it needs to be. The glutathione in the liposomal mixture is good however it doesn't do too much for in the airways (as far as I am aware) but IS a good scavenger of free radicals in cells through-out the body. R-ALA also does the same thing so I am STILL covered on that base.
EDIT: To better aid the community who is interested in alternative medicine; I will probably not start this until after 4/11 (my next appointment) as hopes to get a more controlled expieriment. However if I start to feel junky I am going to jump on it! How do I feel? Better than ever! No shortness of breath - Eating like a horse! Lots of energy. Cough is dry and non-productive at the moment, if I was asked to give a sputum culture at clinic I'd be pretty hard pressed to do it. No crackles no hemoptysis. I have had some operculum (mucus plugs) but today they are gone. So I suppose that means things are moving...? That's all for now.

 

[markbrave]

Dear Incomudrox, I am the father of a two years baby girl with CF (DDF508). Together with other CF patients in Europe, we are investigating alternative medicines to cure cystic fibrosis. We got some interesting results.
We are following your discussions and we admire your perseverance and strenght.
One CF patient in the group is trying colloidal silver to get rid of PA in the lungs but he did not achieve successful results.
He read that you have used Meso silver and you achieved a good improvement. did you ?
If this is true, my friend would like to try Meso silver as well.
What is the procedure ? Dosage ?
Obviously it is not for my daughter but my friend is around 30 years old and he needs all the help he can get.
best regars

 

[Incomudrox]

Originally posted by: markbrave Dear Incomudrox, I am the father of a two years baby girl with CF (DDF508). Together with other CF patients in Europe, we are investigating alternative medicines to cure cystic fibrosis. We got some interesting results. We are following your discussions and we admire your perseverance and strenght. One CF patient in the group is trying colloidal silver to get rid of PA in the lungs but he did not achieve successful results. He read that you have used Meso silver and you achieved a good improvement. did you ? If this is true, my friend would like to try Meso silver as well. What is the procedure ? Dosage ? Obviously it is not for my daughter but my friend is around 30 years old and he needs all the help he can get. best regars

Hello Mark! First I want to asy thank you and thanks to all of the people in Europe you have following this thread and the other threads on this forum. I did use colloidal silver (meso silver). For me the results over-all were positive but short lived. The silver in and of itself caused some inflammation with use over 15 days inhaled at 3mls a day. I had a more positive effect from drinking it. Same amount twice daily. After a while it started to kill my guts good bacteria even while eating yogurt high in cultures. The improvement I saw was about 4% and mucus product was cut down to nothing for about a month. Again I had quite a deal of inflammation from it and had to go on a 15 day tapered dose of prednisone to bring down the inflammation.
So to summerize, do I think Colloidal silver works, yes, for some people. For me I'm 50/50 would I use it again sure thing as bugs have a hard time resisting it. I got your email as well - we can chat through there as like. If you have any more questions please let me know either here or on my gmail.

-Frank/Moderator.