Mycobacteria - Abcessus

[proverbs3]

My 10 year old daughter (just diagnosed in November) is in the hospital for the 3rd time since November. We thought it was going to be a routine tune-up, but after a week she became severely sick for the next 3 weeks. Ended up she received a Mycobacteria, strain Abcessus. Does anyone know anything about this so we can learn somemore about this?

Thanks.

Carol
Faith - 10 yr old

 

[dramamama]

Hi Carol-<br>
I am so sorry that Faith has this darn bug....I have had it for
over 15 years.....we have never treated it because it has been
decided that I am only colonized with it...it is not invasive
(doing lots of damage very quickly)<br>
<br>
I will say that if she is not responding to meds to treat normal cf
bugs, most likely they will consider treating her for it.  The
treatment is a cocktail of drugs (normally three) and they must be
taken for at least six months.  Normally, once a culture comes
back negative, therapy continues for six months.  The pooper
about this bug is that it is inherently resistant to many
antibiotics...it is tricky to find the right combo.<br>
<br>
<br>
I am including a link to the NTM message board.....basically a
message board for those diagnosed and being treated for different
mycobacterial infections (non-tuberculosis)<br>
There are several adults on thsi board with cf, but not any
kids.....don't let it scare you, it just happens to be a wealth of
info for patients.<br>
<br>
I hope you are at a clinic that has experience with this
bug...where are you?  The experts all agree that you should
treat it...to keep it from getting out of control.  If treated
early enough it can be eradicated.<br>
<br>
http://www.ntminfo.com/support/login.asp<br>
<br>
<br>
<br>
<br>
hope this helps.<br>
mandy<br>
<br>

 

[CowTown]

HI Carol,

I have Mycobacteria Avium Complex and have had it for about 9 years now. We have just started treating it in the last few months. Feel free to PM me if you want to talk about it. My strain is a bit different then your daughter's but it's still within the mycobacterium family.

 

[Jane]

Hi Carol,

I'm so sorry you and Faith have to go throught this. My son's both have a mycobacteria, although not the same one as Faith. It really does complicate ever aspect of their care. Mandy included the link to the NIH site forum, its very informative. (read back through the pages too) Lots of people are dealing with this so you will get good advice about treatments.

Feel free to PM me too, I'd be happy to share our story or offer some support.

Thinking of you