Worried

Nightwriter

New member
I do hope that I haven't overwhelmed you with information. But 2 things in your post are jumping out at me. You DID move. And although you put in hardwood floors, no drapes, etc (all great things)...moving to a new environment is laden with new things that can trigger exacerbations. Fresh Paint, new furniture especially if it is gassing off...or it can be something outside -- even a certain tree could trigger symptoms in a sensitive person. Walk from room to room and see if anything is new. Do you have a basement? An attic? How is the air condiontioning and heating system? I really believe you will find something if not several things. Even a new couch can make someone sick -- they had on the news the other day about sofas from China that are making people violently ill because of some anti-mold saches they placed inside of them.

Your son sounds great. All this and just going about his life. Being a fighter is so important.

I hope you can go see an allergist. Ask for skin tests (a full set including things like spices). Ask for an Ige level. You can google these things.

You must be going crazy. I am so sorry for your son, but there is much you can do for him. If you see that your son is stuck in the endless cylce of antibiotics, you must get other opinions.

With all these bacterias I would ask how do they know which one is causing the problem? And does the culture show that the bug is sensitive to any specific antibiotic?

Write down the questions you want to ask the doctor. You will be your son's best advocate.

The second thing that jumps out is your son's reaction to Zyzox -- Rashes are not only typical allergy, but your doctor told him to take Benadryl (which is a histamine blocker -- back to allergies again.) He also has mouth sores. etc. Your son is very sensitive -- so even if it's not allergy per se, you know that he is affected by what his body comes in contact with.

You should discuss all these things with your doctor, but don't be surprised if he thinks an allergy/inflamation connection is ridiculous. When I found my present doctor who gave me my life back, I went back to my old one --a pulmonogist who tested for allergies (but not on me!) -- he thought everything she was doing for me was useless. He refused to work with her, saying he knew her personally and he knew as much about his field as her. That was the last day that I went to him. Ego! Pure and simple.

Wishing you and your son well.
 

Nightwriter

New member
I do hope that I haven't overwhelmed you with information. But 2 things in your post are jumping out at me. You DID move. And although you put in hardwood floors, no drapes, etc (all great things)...moving to a new environment is laden with new things that can trigger exacerbations. Fresh Paint, new furniture especially if it is gassing off...or it can be something outside -- even a certain tree could trigger symptoms in a sensitive person. Walk from room to room and see if anything is new. Do you have a basement? An attic? How is the air condiontioning and heating system? I really believe you will find something if not several things. Even a new couch can make someone sick -- they had on the news the other day about sofas from China that are making people violently ill because of some anti-mold saches they placed inside of them.

Your son sounds great. All this and just going about his life. Being a fighter is so important.

I hope you can go see an allergist. Ask for skin tests (a full set including things like spices). Ask for an Ige level. You can google these things.

You must be going crazy. I am so sorry for your son, but there is much you can do for him. If you see that your son is stuck in the endless cylce of antibiotics, you must get other opinions.

With all these bacterias I would ask how do they know which one is causing the problem? And does the culture show that the bug is sensitive to any specific antibiotic?

Write down the questions you want to ask the doctor. You will be your son's best advocate.

The second thing that jumps out is your son's reaction to Zyzox -- Rashes are not only typical allergy, but your doctor told him to take Benadryl (which is a histamine blocker -- back to allergies again.) He also has mouth sores. etc. Your son is very sensitive -- so even if it's not allergy per se, you know that he is affected by what his body comes in contact with.

You should discuss all these things with your doctor, but don't be surprised if he thinks an allergy/inflamation connection is ridiculous. When I found my present doctor who gave me my life back, I went back to my old one --a pulmonogist who tested for allergies (but not on me!) -- he thought everything she was doing for me was useless. He refused to work with her, saying he knew her personally and he knew as much about his field as her. That was the last day that I went to him. Ego! Pure and simple.

Wishing you and your son well.
 

Nightwriter

New member
I do hope that I haven't overwhelmed you with information. But 2 things in your post are jumping out at me. You DID move. And although you put in hardwood floors, no drapes, etc (all great things)...moving to a new environment is laden with new things that can trigger exacerbations. Fresh Paint, new furniture especially if it is gassing off...or it can be something outside -- even a certain tree could trigger symptoms in a sensitive person. Walk from room to room and see if anything is new. Do you have a basement? An attic? How is the air condiontioning and heating system? I really believe you will find something if not several things. Even a new couch can make someone sick -- they had on the news the other day about sofas from China that are making people violently ill because of some anti-mold saches they placed inside of them.

Your son sounds great. All this and just going about his life. Being a fighter is so important.

I hope you can go see an allergist. Ask for skin tests (a full set including things like spices). Ask for an Ige level. You can google these things.

You must be going crazy. I am so sorry for your son, but there is much you can do for him. If you see that your son is stuck in the endless cylce of antibiotics, you must get other opinions.

With all these bacterias I would ask how do they know which one is causing the problem? And does the culture show that the bug is sensitive to any specific antibiotic?

Write down the questions you want to ask the doctor. You will be your son's best advocate.

The second thing that jumps out is your son's reaction to Zyzox -- Rashes are not only typical allergy, but your doctor told him to take Benadryl (which is a histamine blocker -- back to allergies again.) He also has mouth sores. etc. Your son is very sensitive -- so even if it's not allergy per se, you know that he is affected by what his body comes in contact with.

You should discuss all these things with your doctor, but don't be surprised if he thinks an allergy/inflamation connection is ridiculous. When I found my present doctor who gave me my life back, I went back to my old one --a pulmonogist who tested for allergies (but not on me!) -- he thought everything she was doing for me was useless. He refused to work with her, saying he knew her personally and he knew as much about his field as her. That was the last day that I went to him. Ego! Pure and simple.

Wishing you and your son well.
 

Nightwriter

New member
I do hope that I haven't overwhelmed you with information. But 2 things in your post are jumping out at me. You DID move. And although you put in hardwood floors, no drapes, etc (all great things)...moving to a new environment is laden with new things that can trigger exacerbations. Fresh Paint, new furniture especially if it is gassing off...or it can be something outside -- even a certain tree could trigger symptoms in a sensitive person. Walk from room to room and see if anything is new. Do you have a basement? An attic? How is the air condiontioning and heating system? I really believe you will find something if not several things. Even a new couch can make someone sick -- they had on the news the other day about sofas from China that are making people violently ill because of some anti-mold saches they placed inside of them.

Your son sounds great. All this and just going about his life. Being a fighter is so important.

I hope you can go see an allergist. Ask for skin tests (a full set including things like spices). Ask for an Ige level. You can google these things.

You must be going crazy. I am so sorry for your son, but there is much you can do for him. If you see that your son is stuck in the endless cylce of antibiotics, you must get other opinions.

With all these bacterias I would ask how do they know which one is causing the problem? And does the culture show that the bug is sensitive to any specific antibiotic?

Write down the questions you want to ask the doctor. You will be your son's best advocate.

The second thing that jumps out is your son's reaction to Zyzox -- Rashes are not only typical allergy, but your doctor told him to take Benadryl (which is a histamine blocker -- back to allergies again.) He also has mouth sores. etc. Your son is very sensitive -- so even if it's not allergy per se, you know that he is affected by what his body comes in contact with.

You should discuss all these things with your doctor, but don't be surprised if he thinks an allergy/inflamation connection is ridiculous. When I found my present doctor who gave me my life back, I went back to my old one --a pulmonogist who tested for allergies (but not on me!) -- he thought everything she was doing for me was useless. He refused to work with her, saying he knew her personally and he knew as much about his field as her. That was the last day that I went to him. Ego! Pure and simple.

Wishing you and your son well.
 

Nightwriter

New member
I do hope that I haven't overwhelmed you with information. But 2 things in your post are jumping out at me. You DID move. And although you put in hardwood floors, no drapes, etc (all great things)...moving to a new environment is laden with new things that can trigger exacerbations. Fresh Paint, new furniture especially if it is gassing off...or it can be something outside -- even a certain tree could trigger symptoms in a sensitive person. Walk from room to room and see if anything is new. Do you have a basement? An attic? How is the air condiontioning and heating system? I really believe you will find something if not several things. Even a new couch can make someone sick -- they had on the news the other day about sofas from China that are making people violently ill because of some anti-mold saches they placed inside of them.
<br />
<br />Your son sounds great. All this and just going about his life. Being a fighter is so important.
<br />
<br />I hope you can go see an allergist. Ask for skin tests (a full set including things like spices). Ask for an Ige level. You can google these things.
<br />
<br />You must be going crazy. I am so sorry for your son, but there is much you can do for him. If you see that your son is stuck in the endless cylce of antibiotics, you must get other opinions.
<br />
<br />With all these bacterias I would ask how do they know which one is causing the problem? And does the culture show that the bug is sensitive to any specific antibiotic?
<br />
<br />Write down the questions you want to ask the doctor. You will be your son's best advocate.
<br />
<br />The second thing that jumps out is your son's reaction to Zyzox -- Rashes are not only typical allergy, but your doctor told him to take Benadryl (which is a histamine blocker -- back to allergies again.) He also has mouth sores. etc. Your son is very sensitive -- so even if it's not allergy per se, you know that he is affected by what his body comes in contact with.
<br />
<br />You should discuss all these things with your doctor, but don't be surprised if he thinks an allergy/inflamation connection is ridiculous. When I found my present doctor who gave me my life back, I went back to my old one --a pulmonogist who tested for allergies (but not on me!) -- he thought everything she was doing for me was useless. He refused to work with her, saying he knew her personally and he knew as much about his field as her. That was the last day that I went to him. Ego! Pure and simple.
<br />
<br />Wishing you and your son well.
<br />
<br />
 

Landy

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

Do you mean MRSA?</end quote></div>


There is ORSA (oxacillian resistant staph aureus)and MRSA (methicillin resistant staph). Different names for same bacteria.

Craigsmom, I assume your son is being seen at a CF Center? I'm sorry I don't have more to add, but Nightwriter def. gave some good ideas/suggestions.

Make sure that doctor is doing sputum cultures and making sure that <i>everything</i> detected is being treated. I did IVs once and didn't feel any better afterwards--turns out they only treated the pseudomonas and not the MRSA (that I didn't know I had:confused<img src="i/expressions/face-icon-small-wink.gif" border="0">. After the MRSA was treated, I felt much better.
 

Landy

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

Do you mean MRSA?</end quote></div>


There is ORSA (oxacillian resistant staph aureus)and MRSA (methicillin resistant staph). Different names for same bacteria.

Craigsmom, I assume your son is being seen at a CF Center? I'm sorry I don't have more to add, but Nightwriter def. gave some good ideas/suggestions.

Make sure that doctor is doing sputum cultures and making sure that <i>everything</i> detected is being treated. I did IVs once and didn't feel any better afterwards--turns out they only treated the pseudomonas and not the MRSA (that I didn't know I had:confused<img src="i/expressions/face-icon-small-wink.gif" border="0">. After the MRSA was treated, I felt much better.
 

Landy

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

Do you mean MRSA?</end quote></div>


There is ORSA (oxacillian resistant staph aureus)and MRSA (methicillin resistant staph). Different names for same bacteria.

Craigsmom, I assume your son is being seen at a CF Center? I'm sorry I don't have more to add, but Nightwriter def. gave some good ideas/suggestions.

Make sure that doctor is doing sputum cultures and making sure that <i>everything</i> detected is being treated. I did IVs once and didn't feel any better afterwards--turns out they only treated the pseudomonas and not the MRSA (that I didn't know I had:confused<img src="i/expressions/face-icon-small-wink.gif" border="0">. After the MRSA was treated, I felt much better.
 

Landy

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

Do you mean MRSA?</end quote>


There is ORSA (oxacillian resistant staph aureus)and MRSA (methicillin resistant staph). Different names for same bacteria.

Craigsmom, I assume your son is being seen at a CF Center? I'm sorry I don't have more to add, but Nightwriter def. gave some good ideas/suggestions.

Make sure that doctor is doing sputum cultures and making sure that <i>everything</i> detected is being treated. I did IVs once and didn't feel any better afterwards--turns out they only treated the pseudomonas and not the MRSA (that I didn't know I had:confused<img src="i/expressions/face-icon-small-wink.gif" border="0">. After the MRSA was treated, I felt much better.
 

Landy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Diane</b></i>
<br />
<br />Do you mean MRSA?</end quote>
<br />
<br />
<br />There is ORSA (oxacillian resistant staph aureus)and MRSA (methicillin resistant staph). Different names for same bacteria.
<br />
<br />Craigsmom, I assume your son is being seen at a CF Center? I'm sorry I don't have more to add, but Nightwriter def. gave some good ideas/suggestions.
<br />
<br />Make sure that doctor is doing sputum cultures and making sure that <i>everything</i> detected is being treated. I did IVs once and didn't feel any better afterwards--turns out they only treated the pseudomonas and not the MRSA (that I didn't know I had:confused<img src="i/expressions/face-icon-small-wink.gif" border="0">. After the MRSA was treated, I felt much better.
<br />
<br />
 

Melissa75

Administrator
Craigsmom,
I am sorry that your son is having such a terrible run of things. I would definitely recommend seeing another doctor for a second opinion. When you are banging your head against a wall (figuratively) with frustration and desperation, a different perspective can really help. You could even call the Nurse's Line at National Jewish Hospital in Denver. You might be able to send a sputum sample to them and they could experiment with a effective abs cocktail for Craig.


Dr. Nightwriter :)
What do you and your doctor think about sputum color in relation to infection vs. inflammation? We've already discussed how, like you, I've got the inflammation issue with many environmental triggers. I get rumbly, wheezy...etc. I do not start abs until my sputum changes from clear to neon green and yucky tasting, and my body feels freezing and achy, and my rib area is killing me.
Is that when you would start abs?
Many times, my sputum cultures come back "normal," but the abs fix me pretty quickly (not all abs though and not all cultures). My pulmo and ID think that is because I am not coughing from the right spot and/or for a couple years there was so little space btw courses of Avelox (5 days), that the growth of the bacteria outside by body was inhibited.
The abs I was on were not anti-inflammatory ones (macrolides) so I wasn't having a prednisone-like effect.

Can you PM me her info, btw--I forgot to ask before when you offered?

Thanks :)

BTW, I got the Miele, still waiting for delivery.
 

Melissa75

Administrator
Craigsmom,
I am sorry that your son is having such a terrible run of things. I would definitely recommend seeing another doctor for a second opinion. When you are banging your head against a wall (figuratively) with frustration and desperation, a different perspective can really help. You could even call the Nurse's Line at National Jewish Hospital in Denver. You might be able to send a sputum sample to them and they could experiment with a effective abs cocktail for Craig.


Dr. Nightwriter :)
What do you and your doctor think about sputum color in relation to infection vs. inflammation? We've already discussed how, like you, I've got the inflammation issue with many environmental triggers. I get rumbly, wheezy...etc. I do not start abs until my sputum changes from clear to neon green and yucky tasting, and my body feels freezing and achy, and my rib area is killing me.
Is that when you would start abs?
Many times, my sputum cultures come back "normal," but the abs fix me pretty quickly (not all abs though and not all cultures). My pulmo and ID think that is because I am not coughing from the right spot and/or for a couple years there was so little space btw courses of Avelox (5 days), that the growth of the bacteria outside by body was inhibited.
The abs I was on were not anti-inflammatory ones (macrolides) so I wasn't having a prednisone-like effect.

Can you PM me her info, btw--I forgot to ask before when you offered?

Thanks :)

BTW, I got the Miele, still waiting for delivery.
 

Melissa75

Administrator
Craigsmom,
I am sorry that your son is having such a terrible run of things. I would definitely recommend seeing another doctor for a second opinion. When you are banging your head against a wall (figuratively) with frustration and desperation, a different perspective can really help. You could even call the Nurse's Line at National Jewish Hospital in Denver. You might be able to send a sputum sample to them and they could experiment with a effective abs cocktail for Craig.


Dr. Nightwriter :)
What do you and your doctor think about sputum color in relation to infection vs. inflammation? We've already discussed how, like you, I've got the inflammation issue with many environmental triggers. I get rumbly, wheezy...etc. I do not start abs until my sputum changes from clear to neon green and yucky tasting, and my body feels freezing and achy, and my rib area is killing me.
Is that when you would start abs?
Many times, my sputum cultures come back "normal," but the abs fix me pretty quickly (not all abs though and not all cultures). My pulmo and ID think that is because I am not coughing from the right spot and/or for a couple years there was so little space btw courses of Avelox (5 days), that the growth of the bacteria outside by body was inhibited.
The abs I was on were not anti-inflammatory ones (macrolides) so I wasn't having a prednisone-like effect.

Can you PM me her info, btw--I forgot to ask before when you offered?

Thanks :)

BTW, I got the Miele, still waiting for delivery.
 

Melissa75

Administrator
Craigsmom,
I am sorry that your son is having such a terrible run of things. I would definitely recommend seeing another doctor for a second opinion. When you are banging your head against a wall (figuratively) with frustration and desperation, a different perspective can really help. You could even call the Nurse's Line at National Jewish Hospital in Denver. You might be able to send a sputum sample to them and they could experiment with a effective abs cocktail for Craig.


Dr. Nightwriter :)
What do you and your doctor think about sputum color in relation to infection vs. inflammation? We've already discussed how, like you, I've got the inflammation issue with many environmental triggers. I get rumbly, wheezy...etc. I do not start abs until my sputum changes from clear to neon green and yucky tasting, and my body feels freezing and achy, and my rib area is killing me.
Is that when you would start abs?
Many times, my sputum cultures come back "normal," but the abs fix me pretty quickly (not all abs though and not all cultures). My pulmo and ID think that is because I am not coughing from the right spot and/or for a couple years there was so little space btw courses of Avelox (5 days), that the growth of the bacteria outside by body was inhibited.
The abs I was on were not anti-inflammatory ones (macrolides) so I wasn't having a prednisone-like effect.

Can you PM me her info, btw--I forgot to ask before when you offered?

Thanks :)

BTW, I got the Miele, still waiting for delivery.
 

Melissa75

Administrator
Craigsmom,
<br />I am sorry that your son is having such a terrible run of things. I would definitely recommend seeing another doctor for a second opinion. When you are banging your head against a wall (figuratively) with frustration and desperation, a different perspective can really help. You could even call the Nurse's Line at National Jewish Hospital in Denver. You might be able to send a sputum sample to them and they could experiment with a effective abs cocktail for Craig.
<br />
<br />
<br />Dr. Nightwriter :)
<br />What do you and your doctor think about sputum color in relation to infection vs. inflammation? We've already discussed how, like you, I've got the inflammation issue with many environmental triggers. I get rumbly, wheezy...etc. I do not start abs until my sputum changes from clear to neon green and yucky tasting, and my body feels freezing and achy, and my rib area is killing me.
<br />Is that when you would start abs?
<br />Many times, my sputum cultures come back "normal," but the abs fix me pretty quickly (not all abs though and not all cultures). My pulmo and ID think that is because I am not coughing from the right spot and/or for a couple years there was so little space btw courses of Avelox (5 days), that the growth of the bacteria outside by body was inhibited.
<br />The abs I was on were not anti-inflammatory ones (macrolides) so I wasn't having a prednisone-like effect.
<br />
<br />Can you PM me her info, btw--I forgot to ask before when you offered?
<br />
<br />Thanks :)
<br />
<br />BTW, I got the Miele, still waiting for delivery.
 

dsarver

New member
Your son's groin rash could be yeast infection. That is a very common area to get it especially when being on antibiotics for any length of time. It is usually bright red and somewhat painful. Can even get blistery if it goes on too long. You might want to try some OTC antifungal spray/cream. Just ask pharmacist.
I agree with Nightrider that you need some other opinions as to what may be cause and best way to manage his sx.
Also, National Jewish is a GREAT place, Might try to get appt there. They have lots of info and answers. Test for all kinds of things. Usually insurance will pay for most of it.
Good luck and keep pushing
DSARVER, 45yo with cf dx by National Jewish in 2004
 

dsarver

New member
Your son's groin rash could be yeast infection. That is a very common area to get it especially when being on antibiotics for any length of time. It is usually bright red and somewhat painful. Can even get blistery if it goes on too long. You might want to try some OTC antifungal spray/cream. Just ask pharmacist.
I agree with Nightrider that you need some other opinions as to what may be cause and best way to manage his sx.
Also, National Jewish is a GREAT place, Might try to get appt there. They have lots of info and answers. Test for all kinds of things. Usually insurance will pay for most of it.
Good luck and keep pushing
DSARVER, 45yo with cf dx by National Jewish in 2004
 

dsarver

New member
Your son's groin rash could be yeast infection. That is a very common area to get it especially when being on antibiotics for any length of time. It is usually bright red and somewhat painful. Can even get blistery if it goes on too long. You might want to try some OTC antifungal spray/cream. Just ask pharmacist.
I agree with Nightrider that you need some other opinions as to what may be cause and best way to manage his sx.
Also, National Jewish is a GREAT place, Might try to get appt there. They have lots of info and answers. Test for all kinds of things. Usually insurance will pay for most of it.
Good luck and keep pushing
DSARVER, 45yo with cf dx by National Jewish in 2004
 

dsarver

New member
Your son's groin rash could be yeast infection. That is a very common area to get it especially when being on antibiotics for any length of time. It is usually bright red and somewhat painful. Can even get blistery if it goes on too long. You might want to try some OTC antifungal spray/cream. Just ask pharmacist.
I agree with Nightrider that you need some other opinions as to what may be cause and best way to manage his sx.
Also, National Jewish is a GREAT place, Might try to get appt there. They have lots of info and answers. Test for all kinds of things. Usually insurance will pay for most of it.
Good luck and keep pushing
DSARVER, 45yo with cf dx by National Jewish in 2004
 

dsarver

New member
Your son's groin rash could be yeast infection. That is a very common area to get it especially when being on antibiotics for any length of time. It is usually bright red and somewhat painful. Can even get blistery if it goes on too long. You might want to try some OTC antifungal spray/cream. Just ask pharmacist.
<br />I agree with Nightrider that you need some other opinions as to what may be cause and best way to manage his sx.
<br />Also, National Jewish is a GREAT place, Might try to get appt there. They have lots of info and answers. Test for all kinds of things. Usually insurance will pay for most of it.
<br />Good luck and keep pushing
<br />DSARVER, 45yo with cf dx by National Jewish in 2004
 
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