Anyone with CF and Acid Reflux? Are the two related? My daughter had a bronchoscopy last week and they found acid in her lungs, which means she is aspirating it. Not good...the doc said this can cause major lung damange in the long run. she has to have a endoscopy with a PH probe soon. And I am just worried about it. Any comments woul be great, thanks.
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CF and Acid Reflux
- Thread starter lflatford
- Start date
Lynsey,
CF and reflux are VERY common. This is actually how much daughter, Hayley, now 2½, was diagnosed with CF. She was not gaining weight and had severe reflux, our family doctor put her on Zantac and it was not helping, so he referred us to a pediatric GI and the day after we met with him, she started aspirating her formula. Very scary! I was in the middle of Meijer's shopping ans she was in her infant car seat in the cart (she was only 3 months old) and she started turning blue and gasping for air. We were admitted and she eventually ended up on a venitlaor and everything. They also did the upper GI, which showed severe reflux and then a bronchoscopy, which confirmed she was aspirating formula into her lungs. She ended up having to have a Nissen Fundoplication (stomach wrap) just Google, "Nissen Fundoplication" and you will get a better explanation of the surgery. It does cause problems for some after the surgery, but Hayley has done really well and not had any complications from the Nissen. Basically it wraps the stomach so nothing can come back up the espohagus and out, so she cannot burp, vomit or anything.
Then after the recovery from the surgery we went home thinking everything would be fine, only to return to the hospital the next day because she was still having a difficult time preathing and sounded horrible. They admitted us again and did the sweat test and that's how we found out she had CF.
So if you have anymore questions ask away, but I would stay on top of this and do all the testing your doctors recommend! Good luck!
CF and reflux are VERY common. This is actually how much daughter, Hayley, now 2½, was diagnosed with CF. She was not gaining weight and had severe reflux, our family doctor put her on Zantac and it was not helping, so he referred us to a pediatric GI and the day after we met with him, she started aspirating her formula. Very scary! I was in the middle of Meijer's shopping ans she was in her infant car seat in the cart (she was only 3 months old) and she started turning blue and gasping for air. We were admitted and she eventually ended up on a venitlaor and everything. They also did the upper GI, which showed severe reflux and then a bronchoscopy, which confirmed she was aspirating formula into her lungs. She ended up having to have a Nissen Fundoplication (stomach wrap) just Google, "Nissen Fundoplication" and you will get a better explanation of the surgery. It does cause problems for some after the surgery, but Hayley has done really well and not had any complications from the Nissen. Basically it wraps the stomach so nothing can come back up the espohagus and out, so she cannot burp, vomit or anything.
Then after the recovery from the surgery we went home thinking everything would be fine, only to return to the hospital the next day because she was still having a difficult time preathing and sounded horrible. They admitted us again and did the sweat test and that's how we found out she had CF.
So if you have anymore questions ask away, but I would stay on top of this and do all the testing your doctors recommend! Good luck!
I'm pretty sure they are related. My son is currently on zantac for
reflux, and I've read about other children being treated for reflux
on this site. Adults too I think.<br>
<br>
I'm sorry I can't be of more help, my son just recently started it.
(To see if reflux is why he's got this persistent cough that won't
clear up) I'm sure others will reply shortly. I'm going to do a
search to look up past posts about it.
reflux, and I've read about other children being treated for reflux
on this site. Adults too I think.<br>
<br>
I'm sorry I can't be of more help, my son just recently started it.
(To see if reflux is why he's got this persistent cough that won't
clear up) I'm sure others will reply shortly. I'm going to do a
search to look up past posts about it.
Reflux is very common with cf people. It was only recently that they studied the connection between reflux and lung damage. My kids are scheduled to have Impedance studies next week (similar to the ph probe, but it measure both acid and non-acid reflux). We were told the Nissan Fundoplication is also common with cf people, more so recently.
Its great that they found this problem so early Lynsey. Avery will be healthier for it.
Good luck.
Its great that they found this problem so early Lynsey. Avery will be healthier for it.
Good luck.
Ok so I did a search and it seems a lot of children are on zantac
because it helps the enzymes to work, but I know thats not why my
son is on it. I think they think it could be irritating his lungs
or throat and making him cough. He might be having a bronch in a
couple weeks if no improvement. It sounds very similar to your
situation with your daughter. At least now you know and can
treat it! I'm sorry I can't ease your worries over the endoscopy or
ph probe as I have no experience with those.
because it helps the enzymes to work, but I know thats not why my
son is on it. I think they think it could be irritating his lungs
or throat and making him cough. He might be having a bronch in a
couple weeks if no improvement. It sounds very similar to your
situation with your daughter. At least now you know and can
treat it! I'm sorry I can't ease your worries over the endoscopy or
ph probe as I have no experience with those.
T
tammykrumrey
Guest
Lynsey,
My younger daughter had reflux something terrible! She was on very large amounts of Zantac, and others (I don't remember the names-its been 6 years almost). I really feel for you. I had carpet stains by the rocking chair in her room as well in the spot by the couch where I used to sit during her feedings because she threw up every time you fed her. But at about 9 months old, she just stopped throwing up just out of the blue. We had went to Disney World, and while on vacation there, she stopped, and it never happened again, except when she would drink something too fast. She still takes Prilosec, as does my older daughter, to help with the enzyme digestion.
My younger daughter had reflux something terrible! She was on very large amounts of Zantac, and others (I don't remember the names-its been 6 years almost). I really feel for you. I had carpet stains by the rocking chair in her room as well in the spot by the couch where I used to sit during her feedings because she threw up every time you fed her. But at about 9 months old, she just stopped throwing up just out of the blue. We had went to Disney World, and while on vacation there, she stopped, and it never happened again, except when she would drink something too fast. She still takes Prilosec, as does my older daughter, to help with the enzyme digestion.
I've had heartburn and acid reflux for years now. However, I've never had any procedures done. Just this past month, the doctor put me on Ranitidine (generic Zantac I believe). It has helped a lot. I used to use Maalox. I would seem to go through periods of having acid reflux almost daily for several weeks at a time and then go for periods of time where I have none. The Maalox did help me, but I've gotten to the point where it is more frequent and asked the doctor if I could take something else. He then prescribed this medicine for me. I was a little apprehensive about taking yet another medication, but it really does seem to help.
I didn't realize that children that young could have such severe problems from acid reflux. My heart goes out to all you that have had major problems.
Hope things go well with the endoscopy.
I didn't realize that children that young could have such severe problems from acid reflux. My heart goes out to all you that have had major problems.
Hope things go well with the endoscopy.
damiensmom
New member
My son has acid reflux G.E. R.D actually. And he is 11 months old. But if you dont already keep her proped up when she sleeps 45 degrees and also not lying down right after eating. And my son has also aspirated stomach fluids from reflux. lose clothes and not alot of playing (toys ) that put her in a hunched forward position you know like kids do sitting on the floor on there butt and coloring . I could smell sour milk on my sons breath. I always smell hes breath now it is a decent way to tell if hes stomach is real acidity. I dont know if this helps. God Bless
HiGuys-<br>
<br>
I have never been diagnosed with GERD, but I definitely used to
have acid reflux. I always took zantac and, because I have
m.abscessus supposedly I would have severe reflux forever. I
did some research on probiotics and their importance in the health
of the gi and I figured why not try. I have not taken any
chemical acid reducer since starting on my probiotics...actually,
about two weeks into it.<br>
<br>
Just thought y'all might want to know if you that it has helped me
in this area a ton. Not to mention, my cultures have gotten
better.....everything is moderate growth always used to be heavy.
AND, I now grow moderate growth of normal flora....which I
never have in the past.<br>
<br>
mandy
<br>
I have never been diagnosed with GERD, but I definitely used to
have acid reflux. I always took zantac and, because I have
m.abscessus supposedly I would have severe reflux forever. I
did some research on probiotics and their importance in the health
of the gi and I figured why not try. I have not taken any
chemical acid reducer since starting on my probiotics...actually,
about two weeks into it.<br>
<br>
Just thought y'all might want to know if you that it has helped me
in this area a ton. Not to mention, my cultures have gotten
better.....everything is moderate growth always used to be heavy.
AND, I now grow moderate growth of normal flora....which I
never have in the past.<br>
<br>
mandy
Hi Jane-<br>
How are you doing?? I am so tired tonight so I am just going
to include a link that explains about probiotics and why we
(especially people on antibiotics and steroids) need them.
Read the whole link and tomorrow I will include my
experience, recent studies with cf children and reduced
inflammation in the gi, improved immune system function, reduced
allergies-this has soooo helped me, and so much more...<br>
<br>
and, in some area in Russia --have to find it--many people with TB
lived for years without declining health...due to their intake of
foods high in good bacteria (probiotic). <br>
<br>
<br>
Recent research suggests that the good bacteria fights for space on
mucosal membrane against more pathogenic bacteria.....ie
pseudo, staph, tb, and yeasts.....<br>
<br>
<br>
I'll write tomorrow.<br>
http://nutra-smart.net/yoghurt<br>
<br>
How are you doing?? I am so tired tonight so I am just going
to include a link that explains about probiotics and why we
(especially people on antibiotics and steroids) need them.
Read the whole link and tomorrow I will include my
experience, recent studies with cf children and reduced
inflammation in the gi, improved immune system function, reduced
allergies-this has soooo helped me, and so much more...<br>
<br>
and, in some area in Russia --have to find it--many people with TB
lived for years without declining health...due to their intake of
foods high in good bacteria (probiotic). <br>
<br>
<br>
Recent research suggests that the good bacteria fights for space on
mucosal membrane against more pathogenic bacteria.....ie
pseudo, staph, tb, and yeasts.....<br>
<br>
<br>
I'll write tomorrow.<br>
http://nutra-smart.net/yoghurt<br>
<br>
<h2>Effect of Lactobacillus casei and yogurt administration on
prevention of Pseudomonas aeruginosa infection in young mice.</h2>
<ul class="authors">
<li><a title="Click to search for citations by this author." href=
"http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Alvarez+S%22%5BAuthor%5D">
<b>Alvarez S</b></a>,</li>
<li><a title="Click to search for citations by this author." href=
"http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Herrero+C%22%5BAuthor%5D">
<b>Herrero C</b></a>,</li>
<li><a title="Click to search for citations by this author." href=
"http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Bru+E%22%5BAuthor%5D">
<b>Bru E</b></a>,</li>
<li><a title="Click to search for citations by this author." href=
"http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Perdigon+G%22%5BAuthor%5D">
<b>Perdigon G</b></a>.</li>
</ul>
<p class="affiliation">Centro de Referencia para Lactobacilos,
CERELA-CONICET, San Miguel de Tucuman, Argentina.
salvarez@cerela.org.ar
<p class="abstract">Pseudomonas aeruginosa is an opportunistic
pathogen that rarely causes pulmonary disease in normal hosts but
one that is an important cause of acute pneumonia in
immunocompromised patients, including neonates, and of chronic
pneumonia in patients with cystic fibrosis. The aim of this work
was to study the effect of oral administration of Lactobacillus
casei and yogurt on prevention of P. aeruginosa lung infection in
young mice (3 weeks old). This study demonstrates that oral
administration of L. casei or yogurt to young mice enhanced lung
clearance of P. aeruginosa and phagocytic activity of alveolar
macrophages through a dose-dependent effect. There were, however,
no significant differences in white blood cell (WBC) differential
counts. Furthermore, it was observed that previous administration
of L. casei or yogurt induced a significant increase in IgA and IgM
levels in bronchoalveolar lavages (BALs) after a P. aeruginosa
infection, although there was no relationship with the serum
values.
<p class="pmid">PMID: 11726157 [PubMed - indexed for MEDLINE]<br>
<br>
<br>
<br>
I think this is really interesting because since I have been on
probiotics...8 months went by without me being on one
anti-biotic....nothing inhaled, nothing orally. My culture
changed significantly....without antibiotics. My doc glanced
at it, then did a double take then said, "pretty
good!!"<br>
<br>
prevention of Pseudomonas aeruginosa infection in young mice.</h2>
<ul class="authors">
<li><a title="Click to search for citations by this author." href=
"http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Alvarez+S%22%5BAuthor%5D">
<b>Alvarez S</b></a>,</li>
<li><a title="Click to search for citations by this author." href=
"http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Herrero+C%22%5BAuthor%5D">
<b>Herrero C</b></a>,</li>
<li><a title="Click to search for citations by this author." href=
"http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Bru+E%22%5BAuthor%5D">
<b>Bru E</b></a>,</li>
<li><a title="Click to search for citations by this author." href=
"http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Perdigon+G%22%5BAuthor%5D">
<b>Perdigon G</b></a>.</li>
</ul>
<p class="affiliation">Centro de Referencia para Lactobacilos,
CERELA-CONICET, San Miguel de Tucuman, Argentina.
salvarez@cerela.org.ar
<p class="abstract">Pseudomonas aeruginosa is an opportunistic
pathogen that rarely causes pulmonary disease in normal hosts but
one that is an important cause of acute pneumonia in
immunocompromised patients, including neonates, and of chronic
pneumonia in patients with cystic fibrosis. The aim of this work
was to study the effect of oral administration of Lactobacillus
casei and yogurt on prevention of P. aeruginosa lung infection in
young mice (3 weeks old). This study demonstrates that oral
administration of L. casei or yogurt to young mice enhanced lung
clearance of P. aeruginosa and phagocytic activity of alveolar
macrophages through a dose-dependent effect. There were, however,
no significant differences in white blood cell (WBC) differential
counts. Furthermore, it was observed that previous administration
of L. casei or yogurt induced a significant increase in IgA and IgM
levels in bronchoalveolar lavages (BALs) after a P. aeruginosa
infection, although there was no relationship with the serum
values.
<p class="pmid">PMID: 11726157 [PubMed - indexed for MEDLINE]<br>
<br>
<br>
<br>
I think this is really interesting because since I have been on
probiotics...8 months went by without me being on one
anti-biotic....nothing inhaled, nothing orally. My culture
changed significantly....without antibiotics. My doc glanced
at it, then did a double take then said, "pretty
good!!"<br>
<br>
Hi everyone!
Thanks for all of your responses. Avery is going to have the endoscopy and Ph Probe sometime in the next couple of weeks. For now we will just continue with her prevacid and try to elevate her bed. I will let all of you know how she does when the test is complete.
Thanks for all of your responses. Avery is going to have the endoscopy and Ph Probe sometime in the next couple of weeks. For now we will just continue with her prevacid and try to elevate her bed. I will let all of you know how she does when the test is complete.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dramamama</b></i>
<h2>Effect of Lactobacillus casei and yogurt administration on
prevention of Pseudomonas aeruginosa infection in young mice.</h2>
<ul class="authors">
<li><a title="Click to search for citations by this author." href=
"<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Alvarez+S%22%5BAuthor%5D">
">http://www.ncbi.nlm.nih.gov/en...ez+S%22%5BAuthor%5D">
</a><b>Alvarez S</b></a>,</li>
<li><a title="Click to search for citations by this author." href=
"<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Herrero+C%22%5BAuthor%5D">
">http://www.ncbi.nlm.nih.gov/en...ro+C%22%5BAuthor%5D">
</a><b>Herrero C</b></a>,</li>
<li><a title="Click to search for citations by this author." href=
"<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Bru+E%22%5BAuthor%5D">
">http://www.ncbi.nlm.nih.gov/en...ru+E%22%5BAuthor%5D">
</a><b>Bru E</b></a>,</li>
<li><a title="Click to search for citations by this author." href=
"<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Perdigon+G%22%5BAuthor%5D">
">http://www.ncbi.nlm.nih.gov/en...on+G%22%5BAuthor%5D">
</a><b>Perdigon G</b></a>.</li>
</UL>
<p class="affiliation">Centro de Referencia para Lactobacilos,
CERELA-CONICET, San Miguel de Tucuman, Argentina.
salvarez@cerela.org.ar
<p class="abstract">Pseudomonas aeruginosa is an opportunistic
pathogen that rarely causes pulmonary disease in normal hosts but
one that is an important cause of acute pneumonia in
immunocompromised patients, including neonates, and of chronic
pneumonia in patients with cystic fibrosis. The aim of this work
was to study the effect of oral administration of Lactobacillus
casei and yogurt on prevention of P. aeruginosa lung infection in
young mice (3 weeks old). This study demonstrates that oral
administration of L. casei or yogurt to young mice enhanced lung
clearance of P. aeruginosa and phagocytic activity of alveolar
macrophages through a dose-dependent effect. There were, however,
no significant differences in white blood cell (WBC) differential
counts. Furthermore, it was observed that previous administration
of L. casei or yogurt induced a significant increase in IgA and IgM
levels in bronchoalveolar lavages (BALs) after a P. aeruginosa
infection, although there was no relationship with the serum
values.
<p class="pmid">PMID: 11726157 [PubMed - indexed for MEDLINE]
I think this is really interesting because since I have been on
probiotics...8 months went by without me being on one
anti-biotic....nothing inhaled, nothing orally. My culture
changed significantly....without antibiotics. My doc glanced
at it, then did a double take then said, "pretty
good!!"
</end quote></div>
was this ever published in a peer reviewed journal?
<h2>Effect of Lactobacillus casei and yogurt administration on
prevention of Pseudomonas aeruginosa infection in young mice.</h2>
<ul class="authors">
<li><a title="Click to search for citations by this author." href=
"<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Alvarez+S%22%5BAuthor%5D">
">http://www.ncbi.nlm.nih.gov/en...ez+S%22%5BAuthor%5D">
</a><b>Alvarez S</b></a>,</li>
<li><a title="Click to search for citations by this author." href=
"<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Herrero+C%22%5BAuthor%5D">
">http://www.ncbi.nlm.nih.gov/en...ro+C%22%5BAuthor%5D">
</a><b>Herrero C</b></a>,</li>
<li><a title="Click to search for citations by this author." href=
"<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Bru+E%22%5BAuthor%5D">
">http://www.ncbi.nlm.nih.gov/en...ru+E%22%5BAuthor%5D">
</a><b>Bru E</b></a>,</li>
<li><a title="Click to search for citations by this author." href=
"<a target=_blank class=ftalternatingbarlinklarge href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Search&itool=pubmed_AbstractPlus&term=%22Perdigon+G%22%5BAuthor%5D">
">http://www.ncbi.nlm.nih.gov/en...on+G%22%5BAuthor%5D">
</a><b>Perdigon G</b></a>.</li>
</UL>
<p class="affiliation">Centro de Referencia para Lactobacilos,
CERELA-CONICET, San Miguel de Tucuman, Argentina.
salvarez@cerela.org.ar
<p class="abstract">Pseudomonas aeruginosa is an opportunistic
pathogen that rarely causes pulmonary disease in normal hosts but
one that is an important cause of acute pneumonia in
immunocompromised patients, including neonates, and of chronic
pneumonia in patients with cystic fibrosis. The aim of this work
was to study the effect of oral administration of Lactobacillus
casei and yogurt on prevention of P. aeruginosa lung infection in
young mice (3 weeks old). This study demonstrates that oral
administration of L. casei or yogurt to young mice enhanced lung
clearance of P. aeruginosa and phagocytic activity of alveolar
macrophages through a dose-dependent effect. There were, however,
no significant differences in white blood cell (WBC) differential
counts. Furthermore, it was observed that previous administration
of L. casei or yogurt induced a significant increase in IgA and IgM
levels in bronchoalveolar lavages (BALs) after a P. aeruginosa
infection, although there was no relationship with the serum
values.
<p class="pmid">PMID: 11726157 [PubMed - indexed for MEDLINE]
I think this is really interesting because since I have been on
probiotics...8 months went by without me being on one
anti-biotic....nothing inhaled, nothing orally. My culture
changed significantly....without antibiotics. My doc glanced
at it, then did a double take then said, "pretty
good!!"
</end quote></div>
was this ever published in a peer reviewed journal?
To answer you Amy.....<br>
Journal of Food Protection.<br>
<br>
<b>:</b> <span title="Journal of food protection."><a href=
"javascript:AL_get(this, 'jour', 'J Food Prot.');">J Food
Prot.</a> 2001 Nov;64(11):1768-74<br>
<br>
I don't think it is a medical journal, but it is on
pub-med......<br>
<br>
There are many articles having to do with probiotics and their
effectiveness against pathogenic bacteria......<br>
<br>
Unfortunately, there are no clinical trials with probiotics in the
US because the FDA wants close to four million dollars just to
allow one to be done. You need to have an IND from the FDA to allow
clinical trials with supplements. No pharmaceutical company
will help back it for research because there is no money in
it...nothing patentable.<br>
Luckily, other governments allow these kind of trials because they
see it as a cost effective way to keep their medical costs
down...and because they see long term that preventative health is
paramount. <br>
<br>
Glutathione is a perfect example...nobody wants to help get it
kicked through the FDA for cf research because there is no
money in it. There is an AIDS orphan "drug" called
cachahex.....I can't think of the name....it is pure
glutathione that some company is now charging $350.00 for 60 pills
with the exact same assay as the glutathione I take at 35.00 for
100 pills. It makes me sad..... When will we ever
learn?<br>
<br>
Amy, you are the perfect person to start researching all of these
alternative or integrative health therapies. You are educated
and dogmatic (in a good way<img src="i/expressions/face-icon-small-smile.gif" border="0">) and your knowledge of the way the
pharmaceutical industry works could really work in favor of cf
patients.<br>
<br>
You remind me of myself many years ago when I thought all of my
illness would be cured by modern medicine and billions in
research....my family helped establish the research
foundation.....so don't think I am opposed to research. Most
likely research will cure our illness, but in the mean time
there are many things we can do to help ease some of our
problems...and many of them are natural things God gave us.<br>
<br>
<br>
mandy 33 cf/cfrd<br>
<br>
<br>
<br>
<br>
<br>
<br>
Journal of Food Protection.<br>
<br>
<b>:</b> <span title="Journal of food protection."><a href=
"javascript:AL_get(this, 'jour', 'J Food Prot.');">J Food
Prot.</a> 2001 Nov;64(11):1768-74<br>
<br>
I don't think it is a medical journal, but it is on
pub-med......<br>
<br>
There are many articles having to do with probiotics and their
effectiveness against pathogenic bacteria......<br>
<br>
Unfortunately, there are no clinical trials with probiotics in the
US because the FDA wants close to four million dollars just to
allow one to be done. You need to have an IND from the FDA to allow
clinical trials with supplements. No pharmaceutical company
will help back it for research because there is no money in
it...nothing patentable.<br>
Luckily, other governments allow these kind of trials because they
see it as a cost effective way to keep their medical costs
down...and because they see long term that preventative health is
paramount. <br>
<br>
Glutathione is a perfect example...nobody wants to help get it
kicked through the FDA for cf research because there is no
money in it. There is an AIDS orphan "drug" called
cachahex.....I can't think of the name....it is pure
glutathione that some company is now charging $350.00 for 60 pills
with the exact same assay as the glutathione I take at 35.00 for
100 pills. It makes me sad..... When will we ever
learn?<br>
<br>
Amy, you are the perfect person to start researching all of these
alternative or integrative health therapies. You are educated
and dogmatic (in a good way<img src="i/expressions/face-icon-small-smile.gif" border="0">) and your knowledge of the way the
pharmaceutical industry works could really work in favor of cf
patients.<br>
<br>
You remind me of myself many years ago when I thought all of my
illness would be cured by modern medicine and billions in
research....my family helped establish the research
foundation.....so don't think I am opposed to research. Most
likely research will cure our illness, but in the mean time
there are many things we can do to help ease some of our
problems...and many of them are natural things God gave us.<br>
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mandy 33 cf/cfrd<br>
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i agree with your philosophy completely. I see lots of promise in probiotics and glutothione as well.
i am hesitant to believe articles that aren't published in peer reviewed journals. because anyone can post things on the internet. and in fact, many journals will publish articles. its those articles from peer reviewed journals whose information i trust the most. just cuz something is in print doesn't mean it's true.
the problem with supplements and natural cures is that many herbs and extracts aren't regulated by the government so their potency isn't guarenteed. i could buy some green tea extract and then buy it again. have it analyzed for potency. and each pill could contain different amounts of the active ingredient. it's a totaly unregulated industry.
i am hesitant to believe articles that aren't published in peer reviewed journals. because anyone can post things on the internet. and in fact, many journals will publish articles. its those articles from peer reviewed journals whose information i trust the most. just cuz something is in print doesn't mean it's true.
the problem with supplements and natural cures is that many herbs and extracts aren't regulated by the government so their potency isn't guarenteed. i could buy some green tea extract and then buy it again. have it analyzed for potency. and each pill could contain different amounts of the active ingredient. it's a totaly unregulated industry.
Our son also suffered from reflux when he was a baby, until the age of about 18 months. We also have found probiotics to be very helpful in his digestion and acid regulation. He was weaned off of Pepcid and has not had any issues issues since (now 2).
As far as probiotics being well researched and beneficial, there are tons of research that is out there. The is a book call "The Probiotic Solution" by Brudnak, and well respected Drs (Dr. Weil) who recommend it's use for a variety of health benefits from keeping yeast overgrowth to a minimum (all the time and during antibiotic use), digestive disorders and many other reasons. It does not have any negative side effects (unless you consider yeast die off negative...you can feel a little yucky until the yeast goes away) and it's inexpensive. Much of the reason we even need probiotics these days is because our diet is so far from healthy we can't maintain a natural level of probiotics (found in raw foods) on our own.
I understand what Amy is saying, but there are ALOT of things "they" don't know about peer reviewed studies of drugs either. Continued long-term use of steriods, antibiotics and other drugs have not been well studied yet we have not qualms about putting this stuff in our/our children's bodies. I just think these things need to have equal time in the study of CF and what is useful. There are drugs that have radically changed the outlook of CF, and I am thankful for this. However, I would like to know how many of these drugs would be needed if diet and supplements were given the same priority? This is what I want to know with all that I am! And there are many "natural" companies who take what they do very seriously and follow very strict guidelines (self-governed) to ensure their products are consistent and safely administered. The FDA just makes it difficult for the public to sort through it all because they quite literally stand in the way of the much needed research. It is a miracle GSH is finally being looked at by the CFF...I guarantee the studies are being done in Europe where these things are looked at differently like Mandy said.
I am not willing to wait until my son is chronically ill to do what is safe and effective in helping his body. Using well-researched, natural therparies which have little to no negative side effects doesn't feel like a risk to me. Waiting and not doing my best to give him the best foods and support possible DOES. We are so short-sighted with respect to health in this country... it is sad for all of us really.
As far as probiotics being well researched and beneficial, there are tons of research that is out there. The is a book call "The Probiotic Solution" by Brudnak, and well respected Drs (Dr. Weil) who recommend it's use for a variety of health benefits from keeping yeast overgrowth to a minimum (all the time and during antibiotic use), digestive disorders and many other reasons. It does not have any negative side effects (unless you consider yeast die off negative...you can feel a little yucky until the yeast goes away) and it's inexpensive. Much of the reason we even need probiotics these days is because our diet is so far from healthy we can't maintain a natural level of probiotics (found in raw foods) on our own.
I understand what Amy is saying, but there are ALOT of things "they" don't know about peer reviewed studies of drugs either. Continued long-term use of steriods, antibiotics and other drugs have not been well studied yet we have not qualms about putting this stuff in our/our children's bodies. I just think these things need to have equal time in the study of CF and what is useful. There are drugs that have radically changed the outlook of CF, and I am thankful for this. However, I would like to know how many of these drugs would be needed if diet and supplements were given the same priority? This is what I want to know with all that I am! And there are many "natural" companies who take what they do very seriously and follow very strict guidelines (self-governed) to ensure their products are consistent and safely administered. The FDA just makes it difficult for the public to sort through it all because they quite literally stand in the way of the much needed research. It is a miracle GSH is finally being looked at by the CFF...I guarantee the studies are being done in Europe where these things are looked at differently like Mandy said.
I am not willing to wait until my son is chronically ill to do what is safe and effective in helping his body. Using well-researched, natural therparies which have little to no negative side effects doesn't feel like a risk to me. Waiting and not doing my best to give him the best foods and support possible DOES. We are so short-sighted with respect to health in this country... it is sad for all of us really.