fighting mycobacteria

T

tleigh

New member
I have just finished up a month "tune-up" of home
IV"s and oral antibiotics for an exacerbation.  Tuesday I
start in on a special cocktail of Biaxin, Amikacin, and Zyvox in
order to fight m. chelonei which I have been growing since May.
   It looks like I will be in this for the long haul
(4 mos. at least).<br>
<br>
Just wondering if anyone can give insight on what to expect, words
of wisdom, etc. etc.
 
E

EnergyGal

New member
I never had a mycobacterium with my cf lungs but seven years after my first transplant I got mycobacterium Fortitum (spelling?) and this was cultured only in my sinuses. I was scared so I bought a massage table and drained for an hour a day and after a month the bacteria was gone. The doctor told me it would go away on its own so they did not treat it. So I took it upon myself to do the drain thing.

My only suggestion to you to get well would be do extra cpt or vest therapies. I believe from my experience that vesting and clapping gets out the infection and the drugs help and aid in the healing. I wish you a speed lightening recovery.
 
T

tleigh

New member
yea-more "poundings"!  sometimes it is hard to be
diligent at those things we know we should do. .
 
J

Jane

Digital opinion leader
I'm sorry you have this new complication. My boys are also being treated for myco. (They have a "unique" or new to the world bug called segniliparus rugosa). Currently they are on a long term cocktail of imipenem-IV, bactrim and rifibutin. Last year they were on zyvox but they developed a neuropathy in their feet so they took them off.

This combination seems to be working for them since they are doing better overall.

The hypertonic saline really helped them.


There is a message board for Non-Tuberucular Mycobacteria that may have more people with m. chelonea. Here's the link:

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

Kimmiek

New member
Well, one thing that happened with us was an interaction with the Zybox...Mike was taking Zoloft for anxiety and the pharmacy at the hospital did not catch the interaction, our local pharmacist did. I hear it interacts with alot of similar medications giving high blood pressure and increase heart rate. In the hospital, they just gave Mike some high blood pressure medication. Once he got home and the pharmacist figured it out he went off the zoloft and blood pressure returned to normal!
2nd the Amikacin can decrease kidney functions so drink lots and lots of water!!!

Hope that helps! Other than that, I hope you are feeling better soon!!
 
J

Jane

Digital opinion leader
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Kimmiek</b></i>

Well, one thing that happened with us was an interaction with the Zybox...Mike was taking Zoloft for anxiety

!!</end quote></div>


This was caught by our docs before the kids started on zyvox. They were both on zoloft and needed to be, but the docs thought it was more important to treat the myco. As soon as they stopped the zyvox- we started up zoloft again.
 
K

Kimmiek

New member
We did the same. It was the "lesser of two evils" at the time. They did give us something else, just incase mike had an anxiety attack. It was very short acting..I want to say Klonapin but not 100% sure.
Jane,
Glad to hear they caught your interaction before it posed a problem, unlike we did! It is my understanding Zybox is a fairly new antibiotic and not everyone is aware if it's interactions.
 
T

tleigh

New member
Jane,<br>
thanks for the link-I'll take a look.  I'm also doing the
hypertonic saline-been doing it for about a month, so I'm looking
forward to seeing additional benefits :)
 
T

tleigh

New member
my pharmacist also caught an interaction with Levaquin-which I just
finished up with.  <br>
<br>
Kimmiek-i will be sure to drink lots of water ( and make lots of
trips to the bathroom!!)
 
C

CowTown

New member
Hi Tleigh,

I have had a mycobacterium (MAC) for about 8-9 years, and started on treatment about three months ago. After 3 weeks to 1 month, the amikacin caused me to have ringing in my ears which is now permanent, and my low volume hearing started to decrease as well. They stopped the amikacin right away once I reported hearing problems b/c that's one of the main concerns, apparently. My low volume has come back a little bit, but the ringing is still there.So watch out for that type of stuff and let your doctors know immediately when/if that happens. I was also monitored weekly for my kidney levels, by blood, for the amikacin. It's powerful stuff. Also, there is inhaled amikacin in case the IV type doesn't end up working for you. I was on Amikacin but it ended up that I'm not sensitive to it anyways, so they didn't put me on the inhaled. I'm also on three other oral meds that you didn't mention.

Hope that helps a little. Let me know if you have any questions, I'd be happy to help if possible. Good luck.
 
M

Marcy

New member
Hi.  I cultured m chelonei at one time.  They found this
when I had a bronch done. Did they discover this by only doing a
spew sample?  This my sound kind of weird but-do you live
anywhere near the Mississippi River? I have been told it is very
common by this river. (I grew up 1 block away.)<br>
I wonder if I could still have this and it not show up in a spew
sample?<br>
Marcy
 
T

tleigh

New member
Kelly-thanks for the heads up-i will be sure to monitor my
ears.<br>
<br>
Marcy-I actually live in Arizona.   i believe that i
might have picked it up in the hospital. From what i understand the
bacteria can be "dormant" in your lungs for an
undetermined amount of time-just living off of a host bacteria.
 it is when it becomes "active" that it causes
problems-which look a lot like a CF exacerbation.  they did
find it by a normal sputum test.  i had 4 or 5 in a row that
had cultured for it.  then they had to do sensitivities on
it-this takes longer-it is where they see what the bacteria is
resistant or sensitive to-so they can put you on the right
"cocktail" of drugs.
 
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