cystic fibrosis and mycobacterium avium

[anonymous]

Hi Marisol,
I don't have aim, but feel free to email me-knunnari@comcast.net, I'd be glad to chat. Do you get laryngitis from the inhaled amikacin? Do you mind if I ask what dose you take? I had to decrease my dose from 250mg twice/day to 125mg because I would totally lose my voice. I'm curious if you have had that problem. Look forward to talking to you soon! Kim

 

[anonymous]

Hi Marisol,
I don't have aim, but feel free to email me-knunnari@comcast.net, I'd be glad to chat. Do you get laryngitis from the inhaled amikacin? Do you mind if I ask what dose you take? I had to decrease my dose from 250mg twice/day to 125mg because I would totally lose my voice. I'm curious if you have had that problem. Look forward to talking to you soon! Kim

 

[anonymous]

Hi Pat,
I also wanted to tell you that when I was at Nat'l Jewish they told me that if the IV abx ever stop working, there is a drug called Interferon that can be used to rev up the immune system. It sounded like it is only used if the abx aren't working, but thought I would mention it. Did Dr Iseman bring it up to you? Hope this helps, feel free to get in touch if you have any questions. Kim

 

[anonymous]

Hi Pat,
I also wanted to tell you that when I was at Nat'l Jewish they told me that if the IV abx ever stop working, there is a drug called Interferon that can be used to rev up the immune system. It sounded like it is only used if the abx aren't working, but thought I would mention it. Did Dr Iseman bring it up to you? Hope this helps, feel free to get in touch if you have any questions. Kim

 

[anonymous]

Hi Kim,

We had house guests for a week and so have not had an opportunity to get back to your encouraging email. It sounds like you were on IV amikacin for 6 months Is that right? I have been on it this time for 3 months but I now have intermittent ear ringing so I think I will have to come off of it soon. I was on it 4 years ago for 6 mos. when I had MAI which is a slower growing bacteria and the 6 mos treatment cleared it up and so far it has not reoccurred. But then last winter I cultured positive for abcesses. When I had a CAT scan of chest after 3 months of IV, it showed no change. So I am hoping that maybe the cavity may still get smaller with more time. I could tell by the severity of my cough I really had a bad infection so the meds may take longer. I don't know if I am taken off the amikacin and continue with IV primaxim and zithromax if that will be enough to fight these nasty bacteria. My nurse who draws blood once a week to measure dose level in blood just pulled up so I will say goodby for now but I will be back in touch. I want to hear more about your story. My personal email is: rnetwin@bellatlantic.net Pat

 

[anonymous]

Hi Kim,

We had house guests for a week and so have not had an opportunity to get back to your encouraging email. It sounds like you were on IV amikacin for 6 months Is that right? I have been on it this time for 3 months but I now have intermittent ear ringing so I think I will have to come off of it soon. I was on it 4 years ago for 6 mos. when I had MAI which is a slower growing bacteria and the 6 mos treatment cleared it up and so far it has not reoccurred. But then last winter I cultured positive for abcesses. When I had a CAT scan of chest after 3 months of IV, it showed no change. So I am hoping that maybe the cavity may still get smaller with more time. I could tell by the severity of my cough I really had a bad infection so the meds may take longer. I don't know if I am taken off the amikacin and continue with IV primaxim and zithromax if that will be enough to fight these nasty bacteria. My nurse who draws blood once a week to measure dose level in blood just pulled up so I will say goodby for now but I will be back in touch. I want to hear more about your story. My personal email is: rnetwin@bellatlantic.net Pat

 

[anonymous]

Hello,
I have cystic fibrosis. My name is Glen and age 45 years. Diagnosed ions ago when I was 5 or 6. Frankly I cant remember back that far. If you need to talk let me know and we can talk live. I live in IL work full time, married, children the whole nine yards.
Take care,
Glen Griessler

 

[anonymous]

Hello,
I have cystic fibrosis. My name is Glen and age 45 years. Diagnosed ions ago when I was 5 or 6. Frankly I cant remember back that far. If you need to talk let me know and we can talk live. I live in IL work full time, married, children the whole nine yards.
Take care,
Glen Griessler

 

[tfontain]

hi, i'm 37yo with CF and with Mycobacterium abcessus. My PFTs are good (80%) and am fairly healthy (6ft 195 pds).
I cultured positive for Mycobacterium abcessus last Oct/Nov and did 2wks of Amakacin IVs, and 2 other IVs, then oral antibiotics for a while (i am on oral antibiotics so much, i can't remember when i start and when i go off them).

This July/Aug i was extrememly tired/fatigued all the time.. cultured positive for Mycobacterium abcessus again. Did another 2 wks of Amakacin in Sep, and i am doing 6 months of 2 orals (Biaxin 500 bid and Zyvox 600 bid).. almost half way though it and i'm still tired all the time. i try to get some exercise, but that just seems to run me down and the next day i'm sicker than i was.

I wanted to ask about the Amakacin inhalation.. how does that work and does it cause the hearing problems?

Also, is the Nat'l Jewish ctr in Denver.. are they experts in Mycobacterium abcessus ?
i go to Emory CF ctr in Atlanta... but wanted to see if the folks in Denver know more on this bacteria...

thnx, ted
<a target=new class=ftalternatingbarlinklarge href="mailto:tedfontaine@bellsouth.net">email me</a>