Worried

Craigsmom

New member
This is my first post, but I have read the message board for years. My son is 19 years old and was diagnose with CF when he was 5 mos. old. He has had more digeston problems until 6th grade and that is when he was first hospitalized with lung inf. In the last 2 years he has had a hard time. He has been on oral antibiotics 26 times and has been hospitaled 3 times w/ IV antibiotics 3-6 wks (each time different). He has ORSA, staph and psuedomonas. The ORSA is the one that is giving him so many problems. I know iv abx 2xs in 2 yrs is not alot compared to some, but its also the oral abx He can do either or and once he comes off of them within 2 wks he is sick again. From my understanding ORSA is really bad and hard to treat. DOES ANYONE HAVE ANY INFORMATION. I am really concerned. His PTS are going up and down.
 

Craigsmom

New member
This is my first post, but I have read the message board for years. My son is 19 years old and was diagnose with CF when he was 5 mos. old. He has had more digeston problems until 6th grade and that is when he was first hospitalized with lung inf. In the last 2 years he has had a hard time. He has been on oral antibiotics 26 times and has been hospitaled 3 times w/ IV antibiotics 3-6 wks (each time different). He has ORSA, staph and psuedomonas. The ORSA is the one that is giving him so many problems. I know iv abx 2xs in 2 yrs is not alot compared to some, but its also the oral abx He can do either or and once he comes off of them within 2 wks he is sick again. From my understanding ORSA is really bad and hard to treat. DOES ANYONE HAVE ANY INFORMATION. I am really concerned. His PTS are going up and down.
 

Craigsmom

New member
This is my first post, but I have read the message board for years. My son is 19 years old and was diagnose with CF when he was 5 mos. old. He has had more digeston problems until 6th grade and that is when he was first hospitalized with lung inf. In the last 2 years he has had a hard time. He has been on oral antibiotics 26 times and has been hospitaled 3 times w/ IV antibiotics 3-6 wks (each time different). He has ORSA, staph and psuedomonas. The ORSA is the one that is giving him so many problems. I know iv abx 2xs in 2 yrs is not alot compared to some, but its also the oral abx He can do either or and once he comes off of them within 2 wks he is sick again. From my understanding ORSA is really bad and hard to treat. DOES ANYONE HAVE ANY INFORMATION. I am really concerned. His PTS are going up and down.
 

Craigsmom

New member
This is my first post, but I have read the message board for years. My son is 19 years old and was diagnose with CF when he was 5 mos. old. He has had more digeston problems until 6th grade and that is when he was first hospitalized with lung inf. In the last 2 years he has had a hard time. He has been on oral antibiotics 26 times and has been hospitaled 3 times w/ IV antibiotics 3-6 wks (each time different). He has ORSA, staph and psuedomonas. The ORSA is the one that is giving him so many problems. I know iv abx 2xs in 2 yrs is not alot compared to some, but its also the oral abx He can do either or and once he comes off of them within 2 wks he is sick again. From my understanding ORSA is really bad and hard to treat. DOES ANYONE HAVE ANY INFORMATION. I am really concerned. His PTS are going up and down.
 

Craigsmom

New member
This is my first post, but I have read the message board for years. My son is 19 years old and was diagnose with CF when he was 5 mos. old. He has had more digeston problems until 6th grade and that is when he was first hospitalized with lung inf. In the last 2 years he has had a hard time. He has been on oral antibiotics 26 times and has been hospitaled 3 times w/ IV antibiotics 3-6 wks (each time different). He has ORSA, staph and psuedomonas. The ORSA is the one that is giving him so many problems. I know iv abx 2xs in 2 yrs is not alot compared to some, but its also the oral abx He can do either or and once he comes off of them within 2 wks he is sick again. From my understanding ORSA is really bad and hard to treat. DOES ANYONE HAVE ANY INFORMATION. I am really concerned. His PTS are going up and down.
 

ladybug

New member
I'm sorry this is so stressful for you both. Treating this disease is such a slippery slope. I don't have anything to offer with regard to the ORSA... Not sure what that stands for, sorry.

However, I do know that when I do I.V. meds (about twice a year or so 3+ weeks each time), I am well while I'm on them and then within a week or so I go back to baseline. Its a beautiful reprieve for that week or so afterward and then my bugs just start taking over again and I get the gunky cough, etc. Its how active I keep myself and how nourished I can stay that keeps me from spiralling right back on meds. I think its normal for us to go back down (sometimes even lower than before) shortly after IV meds. They kick out the infection for only so long and then we start producing that thick yucky diseased crap again.

I don't know if this helps put your mind at ease at all to know that I go through that every single time, but I hope you know Craig is not alone in what he's experiencing.

And, my PFT's are generally in the mid-50's without an exacerbation, shoot up to about 63% during and right after IVs and then are back to baseline within a week or so. I have also gone as low as 52-53 when I'm really feeling gunky. Not sure if that's what you mean by "all over the place" or if Craig sees a more marked drop and spike. I'm sure there will be many others on here who see a greater decline and more positive results from IVs.

I'll keep you and your family in my thoughts that you may find answers. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
I'm sorry this is so stressful for you both. Treating this disease is such a slippery slope. I don't have anything to offer with regard to the ORSA... Not sure what that stands for, sorry.

However, I do know that when I do I.V. meds (about twice a year or so 3+ weeks each time), I am well while I'm on them and then within a week or so I go back to baseline. Its a beautiful reprieve for that week or so afterward and then my bugs just start taking over again and I get the gunky cough, etc. Its how active I keep myself and how nourished I can stay that keeps me from spiralling right back on meds. I think its normal for us to go back down (sometimes even lower than before) shortly after IV meds. They kick out the infection for only so long and then we start producing that thick yucky diseased crap again.

I don't know if this helps put your mind at ease at all to know that I go through that every single time, but I hope you know Craig is not alone in what he's experiencing.

And, my PFT's are generally in the mid-50's without an exacerbation, shoot up to about 63% during and right after IVs and then are back to baseline within a week or so. I have also gone as low as 52-53 when I'm really feeling gunky. Not sure if that's what you mean by "all over the place" or if Craig sees a more marked drop and spike. I'm sure there will be many others on here who see a greater decline and more positive results from IVs.

I'll keep you and your family in my thoughts that you may find answers. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
I'm sorry this is so stressful for you both. Treating this disease is such a slippery slope. I don't have anything to offer with regard to the ORSA... Not sure what that stands for, sorry.

However, I do know that when I do I.V. meds (about twice a year or so 3+ weeks each time), I am well while I'm on them and then within a week or so I go back to baseline. Its a beautiful reprieve for that week or so afterward and then my bugs just start taking over again and I get the gunky cough, etc. Its how active I keep myself and how nourished I can stay that keeps me from spiralling right back on meds. I think its normal for us to go back down (sometimes even lower than before) shortly after IV meds. They kick out the infection for only so long and then we start producing that thick yucky diseased crap again.

I don't know if this helps put your mind at ease at all to know that I go through that every single time, but I hope you know Craig is not alone in what he's experiencing.

And, my PFT's are generally in the mid-50's without an exacerbation, shoot up to about 63% during and right after IVs and then are back to baseline within a week or so. I have also gone as low as 52-53 when I'm really feeling gunky. Not sure if that's what you mean by "all over the place" or if Craig sees a more marked drop and spike. I'm sure there will be many others on here who see a greater decline and more positive results from IVs.

I'll keep you and your family in my thoughts that you may find answers. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
I'm sorry this is so stressful for you both. Treating this disease is such a slippery slope. I don't have anything to offer with regard to the ORSA... Not sure what that stands for, sorry.

However, I do know that when I do I.V. meds (about twice a year or so 3+ weeks each time), I am well while I'm on them and then within a week or so I go back to baseline. Its a beautiful reprieve for that week or so afterward and then my bugs just start taking over again and I get the gunky cough, etc. Its how active I keep myself and how nourished I can stay that keeps me from spiralling right back on meds. I think its normal for us to go back down (sometimes even lower than before) shortly after IV meds. They kick out the infection for only so long and then we start producing that thick yucky diseased crap again.

I don't know if this helps put your mind at ease at all to know that I go through that every single time, but I hope you know Craig is not alone in what he's experiencing.

And, my PFT's are generally in the mid-50's without an exacerbation, shoot up to about 63% during and right after IVs and then are back to baseline within a week or so. I have also gone as low as 52-53 when I'm really feeling gunky. Not sure if that's what you mean by "all over the place" or if Craig sees a more marked drop and spike. I'm sure there will be many others on here who see a greater decline and more positive results from IVs.

I'll keep you and your family in my thoughts that you may find answers. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

ladybug

New member
I'm sorry this is so stressful for you both. Treating this disease is such a slippery slope. I don't have anything to offer with regard to the ORSA... Not sure what that stands for, sorry.
<br />
<br />However, I do know that when I do I.V. meds (about twice a year or so 3+ weeks each time), I am well while I'm on them and then within a week or so I go back to baseline. Its a beautiful reprieve for that week or so afterward and then my bugs just start taking over again and I get the gunky cough, etc. Its how active I keep myself and how nourished I can stay that keeps me from spiralling right back on meds. I think its normal for us to go back down (sometimes even lower than before) shortly after IV meds. They kick out the infection for only so long and then we start producing that thick yucky diseased crap again.
<br />
<br />I don't know if this helps put your mind at ease at all to know that I go through that every single time, but I hope you know Craig is not alone in what he's experiencing.
<br />
<br />And, my PFT's are generally in the mid-50's without an exacerbation, shoot up to about 63% during and right after IVs and then are back to baseline within a week or so. I have also gone as low as 52-53 when I'm really feeling gunky. Not sure if that's what you mean by "all over the place" or if Craig sees a more marked drop and spike. I'm sure there will be many others on here who see a greater decline and more positive results from IVs.
<br />
<br />I'll keep you and your family in my thoughts that you may find answers. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Craigsmom</b></i>
He has ORSA, staph and psuedomonas. The ORSA is the one that is giving him so many problems.

From my understanding ORSA is really bad and hard to treat. DOES ANYONE HAVE ANY INFORMATION. I am really concerned. His PTS are going up and down.</end quote></div>

According to this <a target=_blank class=ftalternatingbarlinklarge href="http://www.caercoork.com/orsa/index.html">http://www.caercoork.com/orsa/index.html</a>, ORSA is the same thing as MRSA.

Something from an old email in my box:
There just happens to be an article called "More Good News about Coconut Oil" <a target=_blank class=ftalternatingbarlinklarge href="http://www.westonaprice.org/knowyourfats/coconut-antimicrobial.html ">http://www.westonaprice.org/kn...ut-antimicrobial.html </a> It indicates that studies on coconut oil, other medium chain triglycerides and oregano oil show promise for treating MRSA.
------
I have heard over and over that medium chain triglycerides are beneficial to people with CF. A phd chemist who read my website told me that the oils I listed as things I do well with all happen to be medium chain triglycerides. For a long time, I used only organic coconut oil and organic butter for cooking at home. I recently added olive oil back in to my diet in small quantities. I routinely take oregano oil as an herbal antifungal/antibiotic.

As for pseudo, there are some remarks on a couple of pages of my website that might be of interest:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/quinineandpseudomonas.shtml">http://www.healthgazelle.org/q...neandpseudomonas.shtml</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/magnesiumandazythromycin.shtml">http://www.healthgazelle.org/m...mandazythromycin.shtml</a>

I would suggest sea salt, coconut oil, and glyconutrients plus working on his PH balance as a place to start.

Good luck.
 

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Craigsmom</b></i>
He has ORSA, staph and psuedomonas. The ORSA is the one that is giving him so many problems.

From my understanding ORSA is really bad and hard to treat. DOES ANYONE HAVE ANY INFORMATION. I am really concerned. His PTS are going up and down.</end quote></div>

According to this <a target=_blank class=ftalternatingbarlinklarge href="http://www.caercoork.com/orsa/index.html">http://www.caercoork.com/orsa/index.html</a>, ORSA is the same thing as MRSA.

Something from an old email in my box:
There just happens to be an article called "More Good News about Coconut Oil" <a target=_blank class=ftalternatingbarlinklarge href="http://www.westonaprice.org/knowyourfats/coconut-antimicrobial.html ">http://www.westonaprice.org/kn...ut-antimicrobial.html </a> It indicates that studies on coconut oil, other medium chain triglycerides and oregano oil show promise for treating MRSA.
------
I have heard over and over that medium chain triglycerides are beneficial to people with CF. A phd chemist who read my website told me that the oils I listed as things I do well with all happen to be medium chain triglycerides. For a long time, I used only organic coconut oil and organic butter for cooking at home. I recently added olive oil back in to my diet in small quantities. I routinely take oregano oil as an herbal antifungal/antibiotic.

As for pseudo, there are some remarks on a couple of pages of my website that might be of interest:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/quinineandpseudomonas.shtml">http://www.healthgazelle.org/q...neandpseudomonas.shtml</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/magnesiumandazythromycin.shtml">http://www.healthgazelle.org/m...mandazythromycin.shtml</a>

I would suggest sea salt, coconut oil, and glyconutrients plus working on his PH balance as a place to start.

Good luck.
 

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Craigsmom</b></i>
He has ORSA, staph and psuedomonas. The ORSA is the one that is giving him so many problems.

From my understanding ORSA is really bad and hard to treat. DOES ANYONE HAVE ANY INFORMATION. I am really concerned. His PTS are going up and down.</end quote></div>

According to this <a target=_blank class=ftalternatingbarlinklarge href="http://www.caercoork.com/orsa/index.html">http://www.caercoork.com/orsa/index.html</a>, ORSA is the same thing as MRSA.

Something from an old email in my box:
There just happens to be an article called "More Good News about Coconut Oil" <a target=_blank class=ftalternatingbarlinklarge href="http://www.westonaprice.org/knowyourfats/coconut-antimicrobial.html ">http://www.westonaprice.org/kn...ut-antimicrobial.html </a> It indicates that studies on coconut oil, other medium chain triglycerides and oregano oil show promise for treating MRSA.
------
I have heard over and over that medium chain triglycerides are beneficial to people with CF. A phd chemist who read my website told me that the oils I listed as things I do well with all happen to be medium chain triglycerides. For a long time, I used only organic coconut oil and organic butter for cooking at home. I recently added olive oil back in to my diet in small quantities. I routinely take oregano oil as an herbal antifungal/antibiotic.

As for pseudo, there are some remarks on a couple of pages of my website that might be of interest:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/quinineandpseudomonas.shtml">http://www.healthgazelle.org/q...neandpseudomonas.shtml</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/magnesiumandazythromycin.shtml">http://www.healthgazelle.org/m...mandazythromycin.shtml</a>

I would suggest sea salt, coconut oil, and glyconutrients plus working on his PH balance as a place to start.

Good luck.
 

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Craigsmom</b></i>
He has ORSA, staph and psuedomonas. The ORSA is the one that is giving him so many problems.

From my understanding ORSA is really bad and hard to treat. DOES ANYONE HAVE ANY INFORMATION. I am really concerned. His PTS are going up and down.</end quote>

According to this <a target=_blank class=ftalternatingbarlinklarge href="http://www.caercoork.com/orsa/index.html">http://www.caercoork.com/orsa/index.html</a>, ORSA is the same thing as MRSA.

Something from an old email in my box:
There just happens to be an article called "More Good News about Coconut Oil" <a target=_blank class=ftalternatingbarlinklarge href="http://www.westonaprice.org/knowyourfats/coconut-antimicrobial.html ">http://www.westonaprice.org/kn...ut-antimicrobial.html </a> It indicates that studies on coconut oil, other medium chain triglycerides and oregano oil show promise for treating MRSA.
------
I have heard over and over that medium chain triglycerides are beneficial to people with CF. A phd chemist who read my website told me that the oils I listed as things I do well with all happen to be medium chain triglycerides. For a long time, I used only organic coconut oil and organic butter for cooking at home. I recently added olive oil back in to my diet in small quantities. I routinely take oregano oil as an herbal antifungal/antibiotic.

As for pseudo, there are some remarks on a couple of pages of my website that might be of interest:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/quinineandpseudomonas.shtml">http://www.healthgazelle.org/q...neandpseudomonas.shtml</a>
<a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/magnesiumandazythromycin.shtml">http://www.healthgazelle.org/m...mandazythromycin.shtml</a>

I would suggest sea salt, coconut oil, and glyconutrients plus working on his PH balance as a place to start.

Good luck.
 

MicheleGazelle

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Craigsmom</b></i>
<br />He has ORSA, staph and psuedomonas. The ORSA is the one that is giving him so many problems.
<br />
<br />From my understanding ORSA is really bad and hard to treat. DOES ANYONE HAVE ANY INFORMATION. I am really concerned. His PTS are going up and down.</end quote>
<br />
<br />According to this <a target=_blank class=ftalternatingbarlinklarge href="http://www.caercoork.com/orsa/index.html">http://www.caercoork.com/orsa/index.html</a>, ORSA is the same thing as MRSA.
<br />
<br />Something from an old email in my box:
<br />There just happens to be an article called "More Good News about Coconut Oil" <a target=_blank class=ftalternatingbarlinklarge href="http://www.westonaprice.org/knowyourfats/coconut-antimicrobial.html ">http://www.westonaprice.org/kn...ut-antimicrobial.html </a> It indicates that studies on coconut oil, other medium chain triglycerides and oregano oil show promise for treating MRSA.
<br />------
<br />I have heard over and over that medium chain triglycerides are beneficial to people with CF. A phd chemist who read my website told me that the oils I listed as things I do well with all happen to be medium chain triglycerides. For a long time, I used only organic coconut oil and organic butter for cooking at home. I recently added olive oil back in to my diet in small quantities. I routinely take oregano oil as an herbal antifungal/antibiotic.
<br />
<br />As for pseudo, there are some remarks on a couple of pages of my website that might be of interest:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/quinineandpseudomonas.shtml">http://www.healthgazelle.org/q...neandpseudomonas.shtml</a>
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.healthgazelle.org/magnesiumandazythromycin.shtml">http://www.healthgazelle.org/m...mandazythromycin.shtml</a>
<br />
<br />I would suggest sea salt, coconut oil, and glyconutrients plus working on his PH balance as a place to start.
<br />
<br />Good luck.
 
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