Info on Mycobacteria - Absessus

P

proverbs3

New member
It's been a few months since I've been on-line. I wrote back in July of this year about my daughter's hospital visit and her findings on having this mycobacteria.

I've just searched past messages about this bacteria. I would love to hear from other people who have it or dealing with a family member.

Faith is 11 (12 next month) and has had it since July, 2006. We're on Cefoxitan 4 times a day and Tygicycline twice a day. Her PFT's have not gotten any better since we went in the hospital. They are actually lower now than when we went it. But at least she's consistent and not getting any worse.

I just wanted to know how you're dealing with it either as a CF'er or a caregiver.

Thank you!

Carol
 
P

proverbs3

New member
It's been a few months since I've been on-line. I wrote back in July of this year about my daughter's hospital visit and her findings on having this mycobacteria.

I've just searched past messages about this bacteria. I would love to hear from other people who have it or dealing with a family member.

Faith is 11 (12 next month) and has had it since July, 2006. We're on Cefoxitan 4 times a day and Tygicycline twice a day. Her PFT's have not gotten any better since we went in the hospital. They are actually lower now than when we went it. But at least she's consistent and not getting any worse.

I just wanted to know how you're dealing with it either as a CF'er or a caregiver.

Thank you!

Carol
 
P

proverbs3

New member
It's been a few months since I've been on-line. I wrote back in July of this year about my daughter's hospital visit and her findings on having this mycobacteria.

I've just searched past messages about this bacteria. I would love to hear from other people who have it or dealing with a family member.

Faith is 11 (12 next month) and has had it since July, 2006. We're on Cefoxitan 4 times a day and Tygicycline twice a day. Her PFT's have not gotten any better since we went in the hospital. They are actually lower now than when we went it. But at least she's consistent and not getting any worse.

I just wanted to know how you're dealing with it either as a CF'er or a caregiver.

Thank you!

Carol
 
N

NoExcuses

New member
I would post in the adult section or PM MyNewfy. She has been dealing with mycobacteria for a while and she is a wealth of knowledge on the topic! In fact, she is doing great, so this is even more of a reason to contact her to hear about her success!
 
N

NoExcuses

New member
I would post in the adult section or PM MyNewfy. She has been dealing with mycobacteria for a while and she is a wealth of knowledge on the topic! In fact, she is doing great, so this is even more of a reason to contact her to hear about her success!
 
N

NoExcuses

New member
I would post in the adult section or PM MyNewfy. She has been dealing with mycobacteria for a while and she is a wealth of knowledge on the topic! In fact, she is doing great, so this is even more of a reason to contact her to hear about her success!
 
A

anonymous

New member
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com">check out this web site for mycobacteria</a>

There forum has tons of information and there are lots of people dealing with this disease there that can share their experiences with you. My prayers are with you and your daughter.
 
A

anonymous

New member
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com">check out this web site for mycobacteria</a>

There forum has tons of information and there are lots of people dealing with this disease there that can share their experiences with you. My prayers are with you and your daughter.
 
A

anonymous

New member
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com">check out this web site for mycobacteria</a>

There forum has tons of information and there are lots of people dealing with this disease there that can share their experiences with you. My prayers are with you and your daughter.
 
A

anonymous

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

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com">check out this web site for mycobacteria</a>



There forum has tons of information and there are lots of people dealing with this disease there that can share their experiences with you. My prayers are with you and your daughter.</end quote></div>

Click on patient support (top left side) to access the threads of those living with this disease. Membership is free.
 
A

anonymous

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

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com">check out this web site for mycobacteria</a>



There forum has tons of information and there are lots of people dealing with this disease there that can share their experiences with you. My prayers are with you and your daughter.</end quote></div>

Click on patient support (top left side) to access the threads of those living with this disease. Membership is free.
 
A

anonymous

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

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com">check out this web site for mycobacteria</a>



There forum has tons of information and there are lots of people dealing with this disease there that can share their experiences with you. My prayers are with you and your daughter.</end quote></div>

Click on patient support (top left side) to access the threads of those living with this disease. Membership is free.
 
J

Jane

Digital opinion leader
Hi Carol,

You and I have already spoken about this, but it was a while back and I can't remember if I told you about the mycobacteria forum? Someone else mentioned it too. There IS lots of info and advice from patients.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com/support/login.asp
">http://www.ntminfo.com/support/login.asp
</a>
 
J

Jane

Digital opinion leader
Hi Carol,

You and I have already spoken about this, but it was a while back and I can't remember if I told you about the mycobacteria forum? Someone else mentioned it too. There IS lots of info and advice from patients.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com/support/login.asp
">http://www.ntminfo.com/support/login.asp
</a>
 
J

Jane

Digital opinion leader
Hi Carol,

You and I have already spoken about this, but it was a while back and I can't remember if I told you about the mycobacteria forum? Someone else mentioned it too. There IS lots of info and advice from patients.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com/support/login.asp
">http://www.ntminfo.com/support/login.asp
</a>
 
P

proverbs3

New member
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.
 
P

proverbs3

New member
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.
 
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