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Mycobacteria Forum

J

Jane

Digital opinion leader
A few weeks ago LisaV sent me a link to a forum so I could look into medicines for the bacteria my sons have. It was a great source for info, but since I'm not home I don't have the site bookmarked.

Lisa V or anyone have this site?

Thanks

Jane
 
J

JazzysMom

New member
I found the thread, but have no idea how to post the link on here.....

Go under search putting LisaV as the author & it will bring up a bunch of topics. The one you are referring to is under the topic of
Has anyone been on Tygacil?

BTW IF people know how to post different links from one thread to another or quotes from another thread to another could you share with me please!
 
J

JazzysMom

New member
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com/support/view.asp?id=3029&s=10
">http://www.ntminfo.com/support/view.asp?id=3029&s=10
</a>
I think I did it....Is this it Jane?
 
C

CowTown

New member
Jane,

I have had Macobactera Avium Complex for about 9 years now and they want to aggressively start treating it. I have been trying to do as much research myself on the medicines for it, because they typically use 3-4 different ones and I've heard some or all can have side effects. I've been very concerned about starting these meds, and I'm wondering which one of the bacterias do you have (there are about 9 different types of this non-tuberculosis bacteria which all require different treatments) and which meds have they discussed putting your son on?

I feel a little backed up against a wall, because I know I should treat it now, but I really am worried about the side effects. What have you learned???

Thanks!
Kelly
 
C

CowTown

New member
By the way, I didn't realize about this Mycobacteria Forum that you're askling about. I will deffinitely check it out too. Thanks for posting this!
 
L

LisaV

New member
Sorry I missed your post earlier, Jane.
Good going, Melissa!

The last reply to my post on the Myco forum was a reminder to check the Cheshire forum at <a target=_blank class=ftalternatingbarlinklarge href="http://www.cheshire-med.com/forums/viewforum.php?f=3">http://www.cheshire-med.com/forums/viewforum.php?f=3</a> .

Cheshire is a great forum. Rip and I used it a lot to share information about his bronchiectasis. A quick search shows many articles on Myco on it as well.
 
J

Jane

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

types of this non-tuberculosis bacteria which all require different treatments) and which meds have they discussed putting your son on?
-

Thanks!

Kelly</end quote></div>

Hi Kelly,
The site LisaV told me about has a ton of info on mycobacteria and treatments.

My sons both have segniliparus rugosus, a NEW bacterium (named in 2005). They are two of 7 people in the world known to have this bug. Because it is new, there is no history for treatment. Right now they're just lab rats.


We are working with our pulmonary doctors at Children's Hospital Boston, also the infectious disease, immunology, GI, ENT. We are in contact with the Center for Disease Control, National Jewish Lab and a whole bunch more places and people, who all have no clue what to do. They have sent samples of sputum to culture ans test for sensitivities.But the best guess right now is a 3-5 month course of Tigecycline, oral Moxifloxacin and oral clofazamine.

If you are interesed in the science,

<a target=_blank class=ftalternatingbarlinklarge href="http://ijs.sgmjournals.org/cgi/content/abstract/55/4/1615
">http://ijs.sgmjournals.org/cgi...nt/abstract/55/4/1615
</a>
Jane
 
J

Jane

Digital opinion leader
Kelly, We have also tried some other stuff, with side effects. What are they putting you on?

Jane
 
C

CowTown

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

Kelly, We have also tried some other stuff, with side effects. What are they putting you on?
</end quote></div>


Hi Jane,

Well the two that I know of right now are Clarithronycin (Biaxin) and Ethambutol. Those are the only 2 that my main doctor is comfortable putting me on, and then referred me to another doctor who apparently specializes in MAC treatements. He said there will be another 2 or 3 oral meds that he'll want to put me on. My first concern is kidney failure, second is hearing and/or sight loss! Not a good thing!

In 2001, they were treating my MAC with Rifampin and I got severe kidney failure after taking the med intermittently. Now they will stay far away from the Rifampin family, but the worry of kidney trouble is still there.

Were any of the side effects that you have seen or heard about been kidney failure? I can't believe that both your sons are 2 of 7 people in the world. That's incredible. I hope they figure something out fast for them. I hate these bugs!

I basically don't have any other options, than to take these nasty medicines and hope for the best, with a lot of concerns in the meantime.

Good luck to you and your sons!!!
 
A

anonymous

New member
The side effects were from Linezolid (zyvox) which gave them neuropathy, tingling and numbness in their feet.

And gatifloxacin which gave Josh high blood sugar.

We had a big meeting today and basically they said "we don't know what to do for your kids"

NICE



Jane
 
A

anonymous

New member
Geesh, I <i>am</i> sorry, Jane.
I hate it when they do that!

My [start sarcasm] favorite [end sarcasm] was "there's no good place for 'someone like him' ".

So what does that mean, "We don't know what to do"?
They're not going to do anything?
They're going to try something but they don't know if it will work?
-LisaV
 
J

Jane

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



So what does that mean, "We don't know what to do"?

They're not going to do anything?

They're going to try something but they don't know if it will work?

-LisaV</end quote></div>

All of the above
 
J

Jane

Digital opinion leader
LisaV, I'm not having a good day either.


Our doctors <b>don't know what to do</b> about the infection caused by the bacteria.

They <b>chose not to treat </b>Jesse right now.

They are trying tygecycline with Josh for 3-5, <b>but don't know if it will work</b>.


They are waiting for sensitivity testing which will take months.<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
A

anonymous

New member
Damn, Jane.
I am so sorry there's no known magic bullet.
Here's hoping....
(((((Jane)))))
((((Jesse))))))
(((((Josh))))))
keeping you all in my heart
-LisaV
 
A

anonymous

New member
I was thinking about this driving to work today.
Why in god's name will sensitivity testing take MONTHS!


I can understand that to do a complete research study and write a paper and everything would take months, but straight sensitivities? Is the mystery bug all that hard to grow out?

What lab is doing the work?

Is it anywhere/anyone we can goose? Local? (Harvard or Childrens?) Jewish National? CDC?

Anyway, if you find out who/where is doing the work, let us know. Maybe one of us can goose the thing along. (exhusband's new sweetie works in the CDC labs- I'd love to ask her a favor - she kind of owes me one - long story.)

-lisaV
with so little time...and so much anger
 
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