Info on Mycobacteria - Absessus

[proverbs3]

Thanks Amber for the message. I feel so inept though because I couldn't figure out how to reply!!! The technology world surpassed me years ago!!!!

Anyway, I wanted to tell you that Faith was on Amikacin (sp?) when she was in the hospital, but took us off it and gave us Tygicycline and this Cefoxitan. Her PFT's are around 69 and 72 range. They used to be in the upper 80's and 90's before this summer. They haven't gone up, but they haven't gone down either.

Do you ever get stomaches. She complains 2-3 times a day that her stomache hurts.

She is also having a VERY difficult time with her vitamins. They gave her Vitamax instead of the ADEK and it's still not working. She gets so nauseous that she throws up. It literally takes her about 30 minutes to take her meds in the morning after breakfast. We're going to try and have her take just the vitamins at dinnertime.

Luckily, or I should say, so far she has been able to still do things. She takes piano lessons and is in the school play and does an after school bible club every other week. I have to drag a suitcase with meds and vest on certain days to school, but it works out ok.

She get's up at 5:00 am to get ready for school. I can't imagine what high school will be like. If we have the same regimen, she'll have to get up at 4:00am!!!!!

Anyway, thanks for the chat. It's nice to know there's someone else out there to talk to.

 

[proverbs3]

Thanks for the website, it was very helpful. Most informatin I was aware of, but I have a question.

It says it's an enviromental germ that could be in the water or soil. That if taking showers in stalls or hot tubs that the germ is growing there. We don't have a stall, but we do have two shower curtains and I always wondered about the bacteria growing in the bathtub. I don't clean the tub every week, but after reading that I should be!!!!!

But I wonder if that could be a high possibility of how she got the bacteria in the first place. We have a fan in the bathroom, but it seems to me that it never stays clean.

And then which cleaner to use. I found that the clorax with bleach burned MY lungs. I can't imagine what it would do to Faith's if she was even in the house.

Thanks for listening!!!

 

[proverbs3]

Thanks for the website, it was very helpful. Most informatin I was aware of, but I have a question.

It says it's an enviromental germ that could be in the water or soil. That if taking showers in stalls or hot tubs that the germ is growing there. We don't have a stall, but we do have two shower curtains and I always wondered about the bacteria growing in the bathtub. I don't clean the tub every week, but after reading that I should be!!!!!

But I wonder if that could be a high possibility of how she got the bacteria in the first place. We have a fan in the bathroom, but it seems to me that it never stays clean.

And then which cleaner to use. I found that the clorax with bleach burned MY lungs. I can't imagine what it would do to Faith's if she was even in the house.

Thanks for listening!!!

 

[proverbs3]

Thanks for the website, it was very helpful. Most informatin I was aware of, but I have a question.

It says it's an enviromental germ that could be in the water or soil. That if taking showers in stalls or hot tubs that the germ is growing there. We don't have a stall, but we do have two shower curtains and I always wondered about the bacteria growing in the bathtub. I don't clean the tub every week, but after reading that I should be!!!!!

But I wonder if that could be a high possibility of how she got the bacteria in the first place. We have a fan in the bathroom, but it seems to me that it never stays clean.

And then which cleaner to use. I found that the clorax with bleach burned MY lungs. I can't imagine what it would do to Faith's if she was even in the house.

Thanks for listening!!!

 

[anonymous]

You can never really be sure where you child picked up the bacteria. The very nature of cf opens her up to all kinds of bugs that others do not have to worry about. The big concern seems to be with water that lays domant in the jets of whirlpools and saunas. The bacteria seem to thrive in there and when the jets are activated is sends the germs up into the air and is breathed in. Shower heads are another concern. I would keep her away from hot tubs, whirlpools and when taking showers keep the water on the cooler side (hot steam goes deeper into the lungs) and don't have her linger in there. Get washed up and out of. Maybe even keep the door open or a window ajar so that the steam does not build up in the bathroom. Gardening or playing in the dirt might be another no no you want to consider. You can't get yourself crazy about every germ just do what you can. Hopefully her meds will clear this up. You sound like you are a great mom. Keep up the good work.

 

[anonymous]

You can never really be sure where you child picked up the bacteria. The very nature of cf opens her up to all kinds of bugs that others do not have to worry about. The big concern seems to be with water that lays domant in the jets of whirlpools and saunas. The bacteria seem to thrive in there and when the jets are activated is sends the germs up into the air and is breathed in. Shower heads are another concern. I would keep her away from hot tubs, whirlpools and when taking showers keep the water on the cooler side (hot steam goes deeper into the lungs) and don't have her linger in there. Get washed up and out of. Maybe even keep the door open or a window ajar so that the steam does not build up in the bathroom. Gardening or playing in the dirt might be another no no you want to consider. You can't get yourself crazy about every germ just do what you can. Hopefully her meds will clear this up. You sound like you are a great mom. Keep up the good work.

 

[anonymous]

You can never really be sure where you child picked up the bacteria. The very nature of cf opens her up to all kinds of bugs that others do not have to worry about. The big concern seems to be with water that lays domant in the jets of whirlpools and saunas. The bacteria seem to thrive in there and when the jets are activated is sends the germs up into the air and is breathed in. Shower heads are another concern. I would keep her away from hot tubs, whirlpools and when taking showers keep the water on the cooler side (hot steam goes deeper into the lungs) and don't have her linger in there. Get washed up and out of. Maybe even keep the door open or a window ajar so that the steam does not build up in the bathroom. Gardening or playing in the dirt might be another no no you want to consider. You can't get yourself crazy about every germ just do what you can. Hopefully her meds will clear this up. You sound like you are a great mom. Keep up the good work.

 

[proverbs3]

Wow, you really know how to pick up a girls spirit!! Thanks for the encouraging words. She's still young for hot tubs and has never been in one yet. I never thought about the shower head. This is definitely on my to do list for tomorrow. I like your idea of keeping the curtains opened a little bit and getting her in and out quickly. She does like to linger because it's warm and quiet. In our household, sometimes the bathroom is your only sanctuary!!!

Your advice was very helpful. You don't suppose it would be worthwhile to check to see if our water has something in it that we're not aware of that could be damaging her and us not know it?

 

[proverbs3]

Wow, you really know how to pick up a girls spirit!! Thanks for the encouraging words. She's still young for hot tubs and has never been in one yet. I never thought about the shower head. This is definitely on my to do list for tomorrow. I like your idea of keeping the curtains opened a little bit and getting her in and out quickly. She does like to linger because it's warm and quiet. In our household, sometimes the bathroom is your only sanctuary!!!

Your advice was very helpful. You don't suppose it would be worthwhile to check to see if our water has something in it that we're not aware of that could be damaging her and us not know it?

 

[proverbs3]

Wow, you really know how to pick up a girls spirit!! Thanks for the encouraging words. She's still young for hot tubs and has never been in one yet. I never thought about the shower head. This is definitely on my to do list for tomorrow. I like your idea of keeping the curtains opened a little bit and getting her in and out quickly. She does like to linger because it's warm and quiet. In our household, sometimes the bathroom is your only sanctuary!!!

Your advice was very helpful. You don't suppose it would be worthwhile to check to see if our water has something in it that we're not aware of that could be damaging her and us not know it?

 

[CowTown]

Hi Carol,

I have Mycobacterium Avium Complex, which is not the same strain as yours but related. From what I've learned, yes you pick this bug up from the environment but it's extremely hard to know exactly where you got it. Once you contract it, I don't believe it goes away but you can keep it at bay and under control for a long time. Some people even stop culturing it (although it's still there just so insignificant that it's practically not there).

I don't think you should stress too much over where she got it or you'll drive yourself crazy. For me, all I can really do is stay on top of the MAC meds and watch for signs of it getting worse and/or side effects. That's the most important. You mentioned that the meds aren't helping yet. If she does start to get worse in spite of being on the meds, then they might need to change the medication regime. You should have had a sputum culture to show sensitivies to which mac meds will work for her. There are many different options, but only certain ones will work better then others. That needs to be determined by your doctors.

Looks like you had a lot of questions answered here, so let me know if you have any others. I'd love to help if possible. I would PM you but you said you're not sure how to do that. So I'd be happy to talk to you here. I only know from my experience of having it for 9 years and being treated for it for the past 4-5 months.

 

[CowTown]

Hi Carol,

I have Mycobacterium Avium Complex, which is not the same strain as yours but related. From what I've learned, yes you pick this bug up from the environment but it's extremely hard to know exactly where you got it. Once you contract it, I don't believe it goes away but you can keep it at bay and under control for a long time. Some people even stop culturing it (although it's still there just so insignificant that it's practically not there).

I don't think you should stress too much over where she got it or you'll drive yourself crazy. For me, all I can really do is stay on top of the MAC meds and watch for signs of it getting worse and/or side effects. That's the most important. You mentioned that the meds aren't helping yet. If she does start to get worse in spite of being on the meds, then they might need to change the medication regime. You should have had a sputum culture to show sensitivies to which mac meds will work for her. There are many different options, but only certain ones will work better then others. That needs to be determined by your doctors.

Looks like you had a lot of questions answered here, so let me know if you have any others. I'd love to help if possible. I would PM you but you said you're not sure how to do that. So I'd be happy to talk to you here. I only know from my experience of having it for 9 years and being treated for it for the past 4-5 months.

 

[CowTown]

Hi Carol,

I have Mycobacterium Avium Complex, which is not the same strain as yours but related. From what I've learned, yes you pick this bug up from the environment but it's extremely hard to know exactly where you got it. Once you contract it, I don't believe it goes away but you can keep it at bay and under control for a long time. Some people even stop culturing it (although it's still there just so insignificant that it's practically not there).

I don't think you should stress too much over where she got it or you'll drive yourself crazy. For me, all I can really do is stay on top of the MAC meds and watch for signs of it getting worse and/or side effects. That's the most important. You mentioned that the meds aren't helping yet. If she does start to get worse in spite of being on the meds, then they might need to change the medication regime. You should have had a sputum culture to show sensitivies to which mac meds will work for her. There are many different options, but only certain ones will work better then others. That needs to be determined by your doctors.

Looks like you had a lot of questions answered here, so let me know if you have any others. I'd love to help if possible. I would PM you but you said you're not sure how to do that. So I'd be happy to talk to you here. I only know from my experience of having it for 9 years and being treated for it for the past 4-5 months.

 

[proverbs3]

Thanks Kelly for the input. I try not to think about it too much, but it's so hard because sometimes you're just not sure it's ever going to go away.

The websites that people have mentioned are extremely helpful as well. I feel like I've had a crash course in med school or at least nursing school!!!!

By the way, what's MAC meds?

 

[proverbs3]

Thanks Kelly for the input. I try not to think about it too much, but it's so hard because sometimes you're just not sure it's ever going to go away.

The websites that people have mentioned are extremely helpful as well. I feel like I've had a crash course in med school or at least nursing school!!!!

By the way, what's MAC meds?

 

[proverbs3]

Thanks Kelly for the input. I try not to think about it too much, but it's so hard because sometimes you're just not sure it's ever going to go away.

The websites that people have mentioned are extremely helpful as well. I feel like I've had a crash course in med school or at least nursing school!!!!

By the way, what's MAC meds?

 

[CowTown]

Carol, I'm actually hearing about more and more people who have had their mycobacterias disappear after treatments for several years. It's quite promising! I know it's a scary thing to deal with and wondering if it's ever going to get under control or not, but you have to keep pushing ahead and doing all you can. Hopefully it will go into hiding for a long time.

Depending on the type of mycobacteria you have, there are specific medications to take. For my Mycobacterium Avium Complex (MAC), I take ethambutol, avelox, and zithromycin.

I went through the "crash course in med school" phase too when it all hit the fan. I think the best thing to do is go through that course, it's a very important part of the process.

 

[CowTown]

Carol, I'm actually hearing about more and more people who have had their mycobacterias disappear after treatments for several years. It's quite promising! I know it's a scary thing to deal with and wondering if it's ever going to get under control or not, but you have to keep pushing ahead and doing all you can. Hopefully it will go into hiding for a long time.

Depending on the type of mycobacteria you have, there are specific medications to take. For my Mycobacterium Avium Complex (MAC), I take ethambutol, avelox, and zithromycin.

I went through the "crash course in med school" phase too when it all hit the fan. I think the best thing to do is go through that course, it's a very important part of the process.

 

[CowTown]

Carol, I'm actually hearing about more and more people who have had their mycobacterias disappear after treatments for several years. It's quite promising! I know it's a scary thing to deal with and wondering if it's ever going to get under control or not, but you have to keep pushing ahead and doing all you can. Hopefully it will go into hiding for a long time.

Depending on the type of mycobacteria you have, there are specific medications to take. For my Mycobacterium Avium Complex (MAC), I take ethambutol, avelox, and zithromycin.

I went through the "crash course in med school" phase too when it all hit the fan. I think the best thing to do is go through that course, it's a very important part of the process.

 

[CowTown]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>proverbs3</b></i>

Anyway, I wanted to tell you that Faith was on Amikacin (sp?) when she was in the hospital, but took us off it and gave us Tygicycline and this Cefoxitan. Her PFT's are around 69 and 72 range. They used to be in the upper 80's and 90's before this summer. They haven't gone up, but they haven't gone down either.

Do you ever get stomaches. She complains 2-3 times a day that her stomache hurts.
</end quote></div>



I was on Amikacin too and went off of it.

I always get a bad stomach ache and feel naseous if I take the medications on an empty stomach. I've heard of others complain of this too. have her take the pills after dinner or something. Hope that helps.