Heading back to 60+ FEV1 from 26.

Incomudrox

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>HisAngel</b></i>

<span style="color: rgb(204, 0, 102);">@</u><b><a style="color: rgb(204, 0, 102);" href="http://www.cysticfibrosis.com/profile/index.cfm/Incomudrox">Incomudrox</a><span style="color: rgb(204, 0, 102);"> ......  Any word yet on how your cultures turned out? Hubby started on the CS about a week ago taking it orally, the cough seemed to get better for the first couple days, but it returned the last two days, so last night He started to nebulize it in the evenings, We are going to see it that makes a difference. We are hoping it will. He did say, He was begining to feel better, and still with the cough, the periods when He is not coughing He is feeling better. So hopefully thats a good sign. </u><br style="color: rgb(204, 0, 102);"><br style="color: rgb(204, 0, 102);"><br style="color: rgb(204, 0, 102);"><span style="color: rgb(204, 0, 102);">I did some more research last night on not Mesosilver in particular, but nebulizing CS in general. What I read stated that it is not abnormal when starting the silver to cough, run a fever or have a loss of appetite, it shows your immune system is working and responding to the CS killing off the infection. To Me? As a personal trainer and with a back ground in sports nutrition and holistic health, that makes perfect sense. Simply because when clearing up an infection or cleaning the body out, it goes through a detox period. Basically put, if all that mucos is in there, it has to come out somehow, hence the cough. The low grade fever and/or loss of appetite comes the bodys defense mechanisim working overtime to kill off the bugs.  Thankfully, it has caused Him no loss of appetite, he ran a low grade fever just one night and not after that, now it's just the cough. We are hoping it will continue to get less and finally go away for the most part like yours did.  CS is a potent germ killer so I have faith it will indeed help Him, especially after all the reading I have been doing on it and the results you have had. </u><br style="color: rgb(204, 0, 102);"><br style="color: rgb(204, 0, 102);"><span style="color: rgb(204, 0, 102);">Thank you for bringing CS to the boards here and posting what you have done as well as the results you have had. Keep up the good work on getting back to 60+, I <span style="font-weight: bold;">KNOW</u> you <span style="font-weight: bold;">CAN</u> do it, it's within your grasp! </u><br style="color: rgb(204, 0, 102);"><br style="color: rgb(204, 0, 102);"><span style="color: rgb(204, 0, 102);">Please keep us all updated!</u><br style="color: rgb(204, 0, 102);"><br style="color: rgb(204, 0, 102);"><span style="color: rgb(204, 0, 102);">Brightest Blessings!</u><br style="color: rgb(204, 0, 102);"><span style="color: rgb(204, 0, 102);">Angel~</u>
</b></end quote>

I have no heard about the cultures yet, even though I asked for them to tell me as soon as they know. I'll know at the latest on 12/14 which is my next appointment although I may call tomorrow and bug them if I have time (not highly likely). I have been so busy. I'm glad to hear that he is seeing some response to it. I just ordered a formula that has Haritaki in it, hopefully it will take an Axe to any existing biofilms that maybe left. Haritaki is like a rip-saw through biofilms supposedly and have other benefits for people with CF, hopefully it comes soon. When I get some money I may go buy some NAC.
 

Incomudrox

New member
I did go ahead and order my first order of Cayston, just to have on standby to start on or after the 14th if need be. I may try it and see what it does for me. After all the end goal is to get to 60+! I don't want anyone to think this is turning into a "Modern Medicine is no good thread" because that's not what its about, it's about increasing FEV1 anyway possible. If I can help some people along the way too, that's awesome.
 

Incomudrox

New member
I did go ahead and order my first order of Cayston, just to have on standby to start on or after the 14th if need be. I may try it and see what it does for me. After all the end goal is to get to 60+! I don't want anyone to think this is turning into a "Modern Medicine is no good thread" because that's not what its about, it's about increasing FEV1 anyway possible. If I can help some people along the way too, that's awesome.
 

Incomudrox

New member
I did go ahead and order my first order of Cayston, just to have on standby to start on or after the 14th if need be. I may try it and see what it does for me. After all the end goal is to get to 60+! I don't want anyone to think this is turning into a "Modern Medicine is no good thread" because that's not what its about, it's about increasing FEV1 anyway possible. If I can help some people along the way too, that's awesome.
 

Incomudrox

New member
Just to give everyone an update I bought a "Lung forumla" of herbs that are ayurvedic which contains Haritaki which I have mentioned several times in this thread already.<br><br>I can 100% say that it is worth the money I spent on it, mucus is a consistency that I have not seen in a long time. It does not hold together real well and is not stringy at all as it sometimes can be which helps it stay together IMO. <br><br>The asthmatic tendencies from environmental triggers that can sometimes throw me into a coughing fit are very weak and ten fold controllable. This includes going from a dry air into a hot humid air or kinds of the like. Usually cologne will bother me, has for years not anymore. <br><br>However what Haritaki is known for (once again) is destroying biofilms especially that of pseudomonas aeruginosa. <br><br>For a brief "research study" in its effectiveness against PA you can follow this link..<br><a target="_blank" title="" href="http://www.ayurhelp.com/plants/Cystic_fibrosis_Tc.htm">http://www.ayurhelp.com/plants/Cystic_fibrosis_Tc.htm</a> <br><br>Tomorrow I will be going to clinic at 2PM for PFT's (hoping for 31+ FEV1). I will also be able to find out what my culture was from two weeks ago, I am still using the silver with effectiveness (unless it shows no change in culture I may reconsider but I'm sure it will.) Will have the update tomorrow.<br>
 

Incomudrox

New member
Just to give everyone an update I bought a "Lung forumla" of herbs that are ayurvedic which contains Haritaki which I have mentioned several times in this thread already.<br><br>I can 100% say that it is worth the money I spent on it, mucus is a consistency that I have not seen in a long time. It does not hold together real well and is not stringy at all as it sometimes can be which helps it stay together IMO. <br><br>The asthmatic tendencies from environmental triggers that can sometimes throw me into a coughing fit are very weak and ten fold controllable. This includes going from a dry air into a hot humid air or kinds of the like. Usually cologne will bother me, has for years not anymore. <br><br>However what Haritaki is known for (once again) is destroying biofilms especially that of pseudomonas aeruginosa. <br><br>For a brief "research study" in its effectiveness against PA you can follow this link..<br><a target="_blank" title="" href="http://www.ayurhelp.com/plants/Cystic_fibrosis_Tc.htm">http://www.ayurhelp.com/plants/Cystic_fibrosis_Tc.htm</a> <br><br>Tomorrow I will be going to clinic at 2PM for PFT's (hoping for 31+ FEV1). I will also be able to find out what my culture was from two weeks ago, I am still using the silver with effectiveness (unless it shows no change in culture I may reconsider but I'm sure it will.) Will have the update tomorrow.<br>
 

Incomudrox

New member
Okay so PFT's remained the same 30% FEV1... lost 3lbs so that maybe accounting for something. Got my cultures back. I have GAINED one sensitivity with Staph on the culture from 11/30 compared to the culture from 9/21. I am still culturing both MSSA and PA, the PA however they said is VERY weak and sensitive to everything except for Levaquin. Also Mouth Flora went from "Many" to "Moderate". Heading back to clinic in the 28th because they are worried about weight more than PFTs right now, obviously because weight has a direct correlation to PFT's.
 

Incomudrox

New member
Okay so PFT's remained the same 30% FEV1... lost 3lbs so that maybe accounting for something. Got my cultures back. I have GAINED one sensitivity with Staph on the culture from 11/30 compared to the culture from 9/21. I am still culturing both MSSA and PA, the PA however they said is VERY weak and sensitive to everything except for Levaquin. Also Mouth Flora went from "Many" to "Moderate". Heading back to clinic in the 28th because they are worried about weight more than PFTs right now, obviously because weight has a direct correlation to PFT's.
 

HisAngel

New member
<span style="color: rgb(204, 0, 102);">I am sorry to hear your PFT's have not rose, I was so hoping to hear they did. However, the positive is, they are holding at 30, so keep up the good work and the only way is up! I definetly find it concerning as well with the weight loss. I tried to send you a private message on here, but this site never seems to want to work right for me, so it kept directing me back to the main page for the adult forums. <img src="i/expressions/face-icon-small-sad.gif" border="0"> <br><br>What is your normal daily caloric intake? Have you lowered your food intake any? Are you using any type of weight-gainer supplements, like shakes? I have my husband on a great tasting weight gainer shake in addition to his regular daily meals and it seems to help where his weight is concerned. I had meant to ask you, if you include any type of exercise/fitness regime into your day.? <br><br>Though, I must admit I was hoping for negative cultures, there is the positive that the PA is weakening, perhaps, ti's but more time before it cultures negative.<br><br>I have been working on researching other alternative/natural means of breaking down and/or killing off PA. So I am always open to hearing anyone's positive outcomes with things they have tried. <br><br>If you wish to contact me off forum, please feel free to do so at: Pantherwitch@gmail.com<br><br>If I can help with any information on weight-gainers or nutrition I would be more then happy to. <img src="i/expressions/face-icon-small-smile.gif" border="0"><br><br><br><br>Brightest Blessings!<br>Angel~<br>
 

HisAngel

New member
<span style="color: rgb(204, 0, 102);">I am sorry to hear your PFT's have not rose, I was so hoping to hear they did. However, the positive is, they are holding at 30, so keep up the good work and the only way is up! I definetly find it concerning as well with the weight loss. I tried to send you a private message on here, but this site never seems to want to work right for me, so it kept directing me back to the main page for the adult forums. <img src="i/expressions/face-icon-small-sad.gif" border="0"> <br><br>What is your normal daily caloric intake? Have you lowered your food intake any? Are you using any type of weight-gainer supplements, like shakes? I have my husband on a great tasting weight gainer shake in addition to his regular daily meals and it seems to help where his weight is concerned. I had meant to ask you, if you include any type of exercise/fitness regime into your day.? <br><br>Though, I must admit I was hoping for negative cultures, there is the positive that the PA is weakening, perhaps, ti's but more time before it cultures negative.<br><br>I have been working on researching other alternative/natural means of breaking down and/or killing off PA. So I am always open to hearing anyone's positive outcomes with things they have tried. <br><br>If you wish to contact me off forum, please feel free to do so at: Pantherwitch@gmail.com<br><br>If I can help with any information on weight-gainers or nutrition I would be more then happy to. <img src="i/expressions/face-icon-small-smile.gif" border="0"><br><br><br><br>Brightest Blessings!<br>Angel~<br>
 

Incomudrox

New member
What happened to all the posts I had with the links to the NIH and the 3rd party lab reports on CS effectiveness against different germs????
 

Incomudrox

New member
What happened to all the posts I had with the links to the NIH and the 3rd party lab reports on CS effectiveness against different germs????
 

kaphi72

New member
I was listed at 35% in canada, went down to 25% i went back up to 48% now currently at 45%. I've been listed for almost 11 months, waiting time where I am located will be 24+ months. I need o2 for sleep.
 

kaphi72

New member
I was listed at 35% in canada, went down to 25% i went back up to 48% now currently at 45%. I've been listed for almost 11 months, waiting time where I am located will be 24+ months. I need o2 for sleep.
 

Incomudrox

New member
Just wanted to update everyone here...

About 3 weeks ago I ran out of CS... haven't bought more because I'm currently in a hurt for money... had clinic visit went from 30% to 22% FEV1.... Hmmm no good... Anyhow they told me I have until Monday to do something drastic or it's time to come in (1/9). More silver will be here today VIA UPS man.

Also had to stop Cayston from bleeds, they hooked me up with some Mephyton (Vit K) going to attempt it again. Doc said being a "Low-grade" hemoptysis he wasn't ready to give up on Cayston yet. This was the first time trying Cayston. Will be restarting it tomorrow hoping for the best.

Got Bactrim to see if Staph is acting up or not.

They also loaded me up with some 10% HTS to try out. I seem to tolerate 10% MUCH better than 7%? Weird...

So Monday is judgement day to see if I can avoid the "slammer". Also will give me a better idea if the silver is as effective as I think or it's just coincidence that I ran out and infections acted-a-fool?

In other news I got in contact with the local gym Planet Fitness to ask if they would be willing to donate a membership, they have obliged me with a free membership so starting Monday (assuming i'm not in the slammer) I'll be hitting up the gym hitting the weights.. No cardio for this guy! (Okay maybe a little bit)
 

Incomudrox

New member
Just wanted to update everyone here...

About 3 weeks ago I ran out of CS... haven't bought more because I'm currently in a hurt for money... had clinic visit went from 30% to 22% FEV1.... Hmmm no good... Anyhow they told me I have until Monday to do something drastic or it's time to come in (1/9). More silver will be here today VIA UPS man.

Also had to stop Cayston from bleeds, they hooked me up with some Mephyton (Vit K) going to attempt it again. Doc said being a "Low-grade" hemoptysis he wasn't ready to give up on Cayston yet. This was the first time trying Cayston. Will be restarting it tomorrow hoping for the best.

Got Bactrim to see if Staph is acting up or not.

They also loaded me up with some 10% HTS to try out. I seem to tolerate 10% MUCH better than 7%? Weird...

So Monday is judgement day to see if I can avoid the "slammer". Also will give me a better idea if the silver is as effective as I think or it's just coincidence that I ran out and infections acted-a-fool?

In other news I got in contact with the local gym Planet Fitness to ask if they would be willing to donate a membership, they have obliged me with a free membership so starting Monday (assuming i'm not in the slammer) I'll be hitting up the gym hitting the weights.. No cardio for this guy! (Okay maybe a little bit)
 

JustDucky

New member
Oy! I hope you can avoid club Dread......Praying that the CS really does work and your FEV goes up! I think it is awesome that the gym gave you a membership, I think that will do you a whole lot of good. Hang in there, sending good vibes your way.

Jenn 40 w/CF
 

JustDucky

New member
Oy! I hope you can avoid club Dread......Praying that the CS really does work and your FEV goes up! I think it is awesome that the gym gave you a membership, I think that will do you a whole lot of good. Hang in there, sending good vibes your way.

Jenn 40 w/CF
 

Incomudrox

New member
Thanks Jenn, time will tell! Monday will be interesting for sure! I've got a couple tricks left in me, I'll be damned if I have to go in... I've gone 10 months so far. I mean I'll go if there's no improvement better than 6% because I know when to leave well enough alone. I'm really hoping to go a year w/o checking in though. Hmmm.
 

Incomudrox

New member
Thanks Jenn, time will tell! Monday will be interesting for sure! I've got a couple tricks left in me, I'll be damned if I have to go in... I've gone 10 months so far. I mean I'll go if there's no improvement better than 6% because I know when to leave well enough alone. I'm really hoping to go a year w/o checking in though. Hmmm.
 
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