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Silver and CF

Jane

Digital opinion leader
They changed their format in January. This should work for the new NTM forums

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</a>
 

dramamama

New member
Hi
I think it depends on the product.
You will encounter all of those who tell you how bad it is for you. You be the judge. PM me and I will email you all of the results from the study with KC287...Bree Saffell, who is no longer with the company, sent me all the clinical data and it is amazing. It is 100% effective in killing pseudo and has no potential for resistance according to some studies...I kinda doubt that one...the resistance part.

I was one of the people enrolled in the KC287 trials. I have mycobaterium abscessus and it is resistant to just about every drug out there. My docs were choosing not to treat me...mainly because the cocktail of drugs was so toxic and he anticipated my quality of life would suffer greatly. I had been feeling more and more run down and more shut down and they told me progression..blah, blah. I had been researching everything to see if anything natural could help and the kc287 was my answer. It was a silver colloid with peppermint oil and Tween 80 (a food additive) and that was it. University of Colorado lab was doing their cultures and were experiencing amazing results...so why not look into it?

At this point my dad flew to Colorado Springs, spoke with the head scientist, toured the facility and agreed that it did indeed appear safe...based on reading study after study with this company's product.


Unfortunately, I did not follow the protocal and was subsequently excluded from the trials. What I can say is that the product was amazing and I went from heart rate of 92 resting and pulse ox of 97-98% to resting heart rate of 70 to 100% oxygen sat in five days....that was taken first thing in the morning. I also coughed up horrific amounts of mucus. I am not a big producer and I always feel like if I could just get out a few plugs, my whole life would change. This mucus was really weird....almost like plugs....but there was just so much of it and the color was gross....dark, dark, green. When I was coughing I felt like my whole lungs were going to spill out.

What you should know is that in June of 06 I had a REALLY bad CT scan. My doc told me it was definitely the worst one I have had up to this point. He felt like it was abscessus and he wanted to wait a little longer to treat it. I felt desperate and decided to start the study in September. It was a huge time commitment and was to continue for months. I took it for around six weeks and by the end of week one, I knew I was doing something right for me. I developed a horrible cough and wore myself out getting the crap out of my lungs.

My exercise tolerance increased and my color improved....not scientific, I know, but I was feeling better. On week five, I got food poisoning and was terribly sick for three days...by week six I started my lovely inflammation and had to quit inhaling it.

So, clearly I did not give it a chance to really work...but here is the weird news.
I had NO ANTIBIOTICS from June to October. I can't inhale drugs b/c I have reactive airway disease and I refuse to take oral unless I really feel awful with pseudo. I had another CT SCAN last week in October and it was MUCH BETTER. Doc couldn't understand....what had I done to improve it so much? Wish I could tell him.

Also, after culturing abscessus for 7 years, my last culture showed no abscessus. I think this is just a fluke, but very interesting. I have never NOT cultured it in seven years.

Having said all of this, all silver is not created equal. I personally would stick with Klearsen just because they have so many studies proving their safety profile.
I also know that you can't inhale kc287 within an hour of hypertonic saline because the silver is drwan to the salt molecules and would form the type of silver more prone to cause arrgyria...silver nitrate??? can't remember.

Anyway, I have all of the results and can email them all to you.

The have finished the study although some people are still taking it through wholesale from the company. The are now trying to get in front of the Gates Foundation to help with the TB problem.....
 

dramamama

New member
Hi
I think it depends on the product.
You will encounter all of those who tell you how bad it is for you. You be the judge. PM me and I will email you all of the results from the study with KC287...Bree Saffell, who is no longer with the company, sent me all the clinical data and it is amazing. It is 100% effective in killing pseudo and has no potential for resistance according to some studies...I kinda doubt that one...the resistance part.

I was one of the people enrolled in the KC287 trials. I have mycobaterium abscessus and it is resistant to just about every drug out there. My docs were choosing not to treat me...mainly because the cocktail of drugs was so toxic and he anticipated my quality of life would suffer greatly. I had been feeling more and more run down and more shut down and they told me progression..blah, blah. I had been researching everything to see if anything natural could help and the kc287 was my answer. It was a silver colloid with peppermint oil and Tween 80 (a food additive) and that was it. University of Colorado lab was doing their cultures and were experiencing amazing results...so why not look into it?

At this point my dad flew to Colorado Springs, spoke with the head scientist, toured the facility and agreed that it did indeed appear safe...based on reading study after study with this company's product.


Unfortunately, I did not follow the protocal and was subsequently excluded from the trials. What I can say is that the product was amazing and I went from heart rate of 92 resting and pulse ox of 97-98% to resting heart rate of 70 to 100% oxygen sat in five days....that was taken first thing in the morning. I also coughed up horrific amounts of mucus. I am not a big producer and I always feel like if I could just get out a few plugs, my whole life would change. This mucus was really weird....almost like plugs....but there was just so much of it and the color was gross....dark, dark, green. When I was coughing I felt like my whole lungs were going to spill out.

What you should know is that in June of 06 I had a REALLY bad CT scan. My doc told me it was definitely the worst one I have had up to this point. He felt like it was abscessus and he wanted to wait a little longer to treat it. I felt desperate and decided to start the study in September. It was a huge time commitment and was to continue for months. I took it for around six weeks and by the end of week one, I knew I was doing something right for me. I developed a horrible cough and wore myself out getting the crap out of my lungs.

My exercise tolerance increased and my color improved....not scientific, I know, but I was feeling better. On week five, I got food poisoning and was terribly sick for three days...by week six I started my lovely inflammation and had to quit inhaling it.

So, clearly I did not give it a chance to really work...but here is the weird news.
I had NO ANTIBIOTICS from June to October. I can't inhale drugs b/c I have reactive airway disease and I refuse to take oral unless I really feel awful with pseudo. I had another CT SCAN last week in October and it was MUCH BETTER. Doc couldn't understand....what had I done to improve it so much? Wish I could tell him.

Also, after culturing abscessus for 7 years, my last culture showed no abscessus. I think this is just a fluke, but very interesting. I have never NOT cultured it in seven years.

Having said all of this, all silver is not created equal. I personally would stick with Klearsen just because they have so many studies proving their safety profile.
I also know that you can't inhale kc287 within an hour of hypertonic saline because the silver is drwan to the salt molecules and would form the type of silver more prone to cause arrgyria...silver nitrate??? can't remember.

Anyway, I have all of the results and can email them all to you.

The have finished the study although some people are still taking it through wholesale from the company. The are now trying to get in front of the Gates Foundation to help with the TB problem.....
 

dramamama

New member
Hi
I think it depends on the product.
You will encounter all of those who tell you how bad it is for you. You be the judge. PM me and I will email you all of the results from the study with KC287...Bree Saffell, who is no longer with the company, sent me all the clinical data and it is amazing. It is 100% effective in killing pseudo and has no potential for resistance according to some studies...I kinda doubt that one...the resistance part.

I was one of the people enrolled in the KC287 trials. I have mycobaterium abscessus and it is resistant to just about every drug out there. My docs were choosing not to treat me...mainly because the cocktail of drugs was so toxic and he anticipated my quality of life would suffer greatly. I had been feeling more and more run down and more shut down and they told me progression..blah, blah. I had been researching everything to see if anything natural could help and the kc287 was my answer. It was a silver colloid with peppermint oil and Tween 80 (a food additive) and that was it. University of Colorado lab was doing their cultures and were experiencing amazing results...so why not look into it?

At this point my dad flew to Colorado Springs, spoke with the head scientist, toured the facility and agreed that it did indeed appear safe...based on reading study after study with this company's product.


Unfortunately, I did not follow the protocal and was subsequently excluded from the trials. What I can say is that the product was amazing and I went from heart rate of 92 resting and pulse ox of 97-98% to resting heart rate of 70 to 100% oxygen sat in five days....that was taken first thing in the morning. I also coughed up horrific amounts of mucus. I am not a big producer and I always feel like if I could just get out a few plugs, my whole life would change. This mucus was really weird....almost like plugs....but there was just so much of it and the color was gross....dark, dark, green. When I was coughing I felt like my whole lungs were going to spill out.

What you should know is that in June of 06 I had a REALLY bad CT scan. My doc told me it was definitely the worst one I have had up to this point. He felt like it was abscessus and he wanted to wait a little longer to treat it. I felt desperate and decided to start the study in September. It was a huge time commitment and was to continue for months. I took it for around six weeks and by the end of week one, I knew I was doing something right for me. I developed a horrible cough and wore myself out getting the crap out of my lungs.

My exercise tolerance increased and my color improved....not scientific, I know, but I was feeling better. On week five, I got food poisoning and was terribly sick for three days...by week six I started my lovely inflammation and had to quit inhaling it.

So, clearly I did not give it a chance to really work...but here is the weird news.
I had NO ANTIBIOTICS from June to October. I can't inhale drugs b/c I have reactive airway disease and I refuse to take oral unless I really feel awful with pseudo. I had another CT SCAN last week in October and it was MUCH BETTER. Doc couldn't understand....what had I done to improve it so much? Wish I could tell him.

Also, after culturing abscessus for 7 years, my last culture showed no abscessus. I think this is just a fluke, but very interesting. I have never NOT cultured it in seven years.

Having said all of this, all silver is not created equal. I personally would stick with Klearsen just because they have so many studies proving their safety profile.
I also know that you can't inhale kc287 within an hour of hypertonic saline because the silver is drwan to the salt molecules and would form the type of silver more prone to cause arrgyria...silver nitrate??? can't remember.

Anyway, I have all of the results and can email them all to you.

The have finished the study although some people are still taking it through wholesale from the company. The are now trying to get in front of the Gates Foundation to help with the TB problem.....
 

Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dramamama</b></i>

What you should know is that in June of 06 I had a REALLY bad CT scan. My doc told me it was definitely the worst one I have had up to this point. He felt like it was abscessus and he wanted to wait a little longer to treat it.

Also, after culturing abscessus for 7 years, my last culture showed no abscessus. I think this is just a fluke, but very interesting. I have never NOT cultured it in seven years.

.....</end quote></div>

This is remarkable! My question.. what's the matter with your doctor? Bad CT and he still didn't want to treat?
 

Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dramamama</b></i>

What you should know is that in June of 06 I had a REALLY bad CT scan. My doc told me it was definitely the worst one I have had up to this point. He felt like it was abscessus and he wanted to wait a little longer to treat it.

Also, after culturing abscessus for 7 years, my last culture showed no abscessus. I think this is just a fluke, but very interesting. I have never NOT cultured it in seven years.

.....</end quote></div>

This is remarkable! My question.. what's the matter with your doctor? Bad CT and he still didn't want to treat?
 

Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dramamama</b></i>

What you should know is that in June of 06 I had a REALLY bad CT scan. My doc told me it was definitely the worst one I have had up to this point. He felt like it was abscessus and he wanted to wait a little longer to treat it.

Also, after culturing abscessus for 7 years, my last culture showed no abscessus. I think this is just a fluke, but very interesting. I have never NOT cultured it in seven years.

.....</end quote></div>

This is remarkable! My question.. what's the matter with your doctor? Bad CT and he still didn't want to treat?
 

dramamama

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

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



What you should know is that in June of 06 I had a REALLY bad CT scan. My doc told me it was definitely the worst one I have had up to this point. He felt like it was abscessus and he wanted to wait a little longer to treat it.



Also, after culturing abscessus for 7 years, my last culture showed no abscessus. I think this is just a fluke, but very interesting. I have never NOT cultured it in seven years.



.....</end quote></div>



This is remarkable! My question.. what's the matter with your doctor? Bad CT and he still didn't want to treat?</end quote></div>

He says: I have had it too long, I am resistant to all but one med, I have hypersensitivity to abs, abscessuss can only be treated and not eradicated...and that is if you are sensitive to more than three meds-

My opinion is this- he is more of an end game doctor. He is head of transplant and head of our cf clinic. I think he wants to keep transplant open for me and if we treat it now and it becomes completely resistant, no transplant for me...ever. The NEXT great drug for mycobacterium is being tested by Johnson & Johnson and will not be on the market until 2010.

He will treat it if my pfts drop, but really they are about the same.
 

dramamama

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

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



What you should know is that in June of 06 I had a REALLY bad CT scan. My doc told me it was definitely the worst one I have had up to this point. He felt like it was abscessus and he wanted to wait a little longer to treat it.



Also, after culturing abscessus for 7 years, my last culture showed no abscessus. I think this is just a fluke, but very interesting. I have never NOT cultured it in seven years.



.....</end quote></div>



This is remarkable! My question.. what's the matter with your doctor? Bad CT and he still didn't want to treat?</end quote></div>

He says: I have had it too long, I am resistant to all but one med, I have hypersensitivity to abs, abscessuss can only be treated and not eradicated...and that is if you are sensitive to more than three meds-

My opinion is this- he is more of an end game doctor. He is head of transplant and head of our cf clinic. I think he wants to keep transplant open for me and if we treat it now and it becomes completely resistant, no transplant for me...ever. The NEXT great drug for mycobacterium is being tested by Johnson & Johnson and will not be on the market until 2010.

He will treat it if my pfts drop, but really they are about the same.
 

dramamama

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

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



What you should know is that in June of 06 I had a REALLY bad CT scan. My doc told me it was definitely the worst one I have had up to this point. He felt like it was abscessus and he wanted to wait a little longer to treat it.



Also, after culturing abscessus for 7 years, my last culture showed no abscessus. I think this is just a fluke, but very interesting. I have never NOT cultured it in seven years.



.....</end quote></div>



This is remarkable! My question.. what's the matter with your doctor? Bad CT and he still didn't want to treat?</end quote></div>

He says: I have had it too long, I am resistant to all but one med, I have hypersensitivity to abs, abscessuss can only be treated and not eradicated...and that is if you are sensitive to more than three meds-

My opinion is this- he is more of an end game doctor. He is head of transplant and head of our cf clinic. I think he wants to keep transplant open for me and if we treat it now and it becomes completely resistant, no transplant for me...ever. The NEXT great drug for mycobacterium is being tested by Johnson & Johnson and will not be on the market until 2010.

He will treat it if my pfts drop, but really they are about the same.
 

dramamama

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

Colloidal silver never leaves your system, and can eventually turn your skin grey, permanently! I wouldn't use it.</end quote></div>


I agree I would NEVER take it....I did it for a study and was being followed by my other doc in LA. I thought the risk was worth the chance so I tried it in a study. I don't take it anymore.....but, if my sbscessus status changed and I became really sick and no drugs to treat it...you bet your butt I would do it again.....with this same product....not just any silver colloid.

My other friend from Europe with abscessus was very sick and was in the hospital for 9 months. His doctor said try it...he had tried everything else including gamma interferon and was continuing to get worse. After being on it for five weeks, he was out of the hospital and even bought a bike for exercise....unbelievable. They test pfts differently there but his pfts changed from blowing 1.2 litres to 2.0 litres in five weeks...and his bacterial load went way down in his sputum. Up to that point, he had only gotten worse weekly on many meds.

One of the top Mycobacterium docs in the country said if nothin else works, he is not opposed to his patients trying it...this guy is an ID guy I went to in Tyler, Texas of all places.

i am not all for people drinking it....you get way too much in your system, but the way I did it and the results I had and others had lets me know there is something to this.

AND, your comment that it never leaves the body is untrue. It does leave the body if your body is not over-loaded by it.
 

dramamama

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

Colloidal silver never leaves your system, and can eventually turn your skin grey, permanently! I wouldn't use it.</end quote></div>


I agree I would NEVER take it....I did it for a study and was being followed by my other doc in LA. I thought the risk was worth the chance so I tried it in a study. I don't take it anymore.....but, if my sbscessus status changed and I became really sick and no drugs to treat it...you bet your butt I would do it again.....with this same product....not just any silver colloid.

My other friend from Europe with abscessus was very sick and was in the hospital for 9 months. His doctor said try it...he had tried everything else including gamma interferon and was continuing to get worse. After being on it for five weeks, he was out of the hospital and even bought a bike for exercise....unbelievable. They test pfts differently there but his pfts changed from blowing 1.2 litres to 2.0 litres in five weeks...and his bacterial load went way down in his sputum. Up to that point, he had only gotten worse weekly on many meds.

One of the top Mycobacterium docs in the country said if nothin else works, he is not opposed to his patients trying it...this guy is an ID guy I went to in Tyler, Texas of all places.

i am not all for people drinking it....you get way too much in your system, but the way I did it and the results I had and others had lets me know there is something to this.

AND, your comment that it never leaves the body is untrue. It does leave the body if your body is not over-loaded by it.
 

dramamama

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

Colloidal silver never leaves your system, and can eventually turn your skin grey, permanently! I wouldn't use it.</end quote></div>


I agree I would NEVER take it....I did it for a study and was being followed by my other doc in LA. I thought the risk was worth the chance so I tried it in a study. I don't take it anymore.....but, if my sbscessus status changed and I became really sick and no drugs to treat it...you bet your butt I would do it again.....with this same product....not just any silver colloid.

My other friend from Europe with abscessus was very sick and was in the hospital for 9 months. His doctor said try it...he had tried everything else including gamma interferon and was continuing to get worse. After being on it for five weeks, he was out of the hospital and even bought a bike for exercise....unbelievable. They test pfts differently there but his pfts changed from blowing 1.2 litres to 2.0 litres in five weeks...and his bacterial load went way down in his sputum. Up to that point, he had only gotten worse weekly on many meds.

One of the top Mycobacterium docs in the country said if nothin else works, he is not opposed to his patients trying it...this guy is an ID guy I went to in Tyler, Texas of all places.

i am not all for people drinking it....you get way too much in your system, but the way I did it and the results I had and others had lets me know there is something to this.

AND, your comment that it never leaves the body is untrue. It does leave the body if your body is not over-loaded by it.
 

Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dramamama</b></i>


One of the top Mycobacterium docs in the country said if nothin else works, he is not opposed to his patients trying it...this guy is an ID guy I went to in Tyler, Texas of all places.

.</end quote></div>

I think this is probably the same one who helped my kids. Our doctor had a great network.
 
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