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MomtoprincesswithCF -- I was told that I should not expect to ever be culture negative. It does happen, but I think it's rare. That said, I've always been told that if I ever get to negative smears, they will continue on the treatments for a full twelve months before stopping. I'm not sure from...

Chrissie -- I didn't think about it until I saw Hail2Pitt's comments above, but I have similar experiences. At night, I usually can't sleep under a quilt or blanket because I get too hot. I'm not really sure which med causes this, but I suspect it's the Cefoxitin. I also have always taken...

My sweat tests are negative, but I was diagnosed with CF by genetic testing. Some less common mutations produce negative sweat tests. Generally, these are more mild cases. It's good that you are getting the genetic test done. I've read on here that it's become common to only test for the most...

If anyone is interested, here's a TV interview with Dr. Stephenson talking about this study: http://www.ctvnews.ca/health/health-headlines/canadians-with-cystic-fibrosis-living-years-longer-but-many-still-die-young-1.2100097

I haven't noticed a difference between coughing up more or less when I'm on my NTM meds, although I have been on them for a long time now. I have had M. abscessus progress while I was on treatments, although they had made some changes to my meds leading up to the flare up. It seems like it...

I was diagnosed in 2001 at age 34. I had a nasty lung infection for months that wouldn't go away. After a referral to a specialist, I was diagnosed by a genetic test. Once they knew I had CF and confirmed which infections I had, they put me on the right treatment and I was feeling better in a...

I saw my NTM specialist yesterday. He said that the FDA did not approve Arikace because they didn't think the trials were sufficient. He expects Health Canada to reach the same conclusion. He mentioned that they're starting another round of trials -- I think he said later this year for the US...

I was switched to inhaled Amikacin after the IV form caused hearing damage. I was told the inhaled form is much safer and I did not have problems with my hearing while I was on the inhaled form. Unfortunately, it's not as effective either. After almost a year and a half on the inhaled, I had a...

I agree with the comment above -- you could have CF. I was diagnosed at age 34. My mutations indicate a more mild case, which is common for people who are diagnosed as adults. I didn't really have GI symptoms for a long time, but I've started to have them in recent years. Although I am...

Good luck with your treatments -- I hope they're effective. Like Katie, I'm surprised they only said 6 months. I was originally told 18 to 24 months. They wanted to continue treatments for 12 months after I switched to negative AFB smears. I have read comments from others online who are on...

I wouldn't say I've felt anxious, but over the course of treatment I've felt frustrated, discouraged and depressed. I would agree that it's overwhelming to start such a long treatment plan. On the positive side, your regimen (three orals, one inhaled) is manageable relative to what it could be...

Sputum samples are less than perfect. The sample you provide comes from a certain place in your lungs and that place will differ from sample to sample. If you've had several negative MRSA samples in a row, that shows a trend. If you've only had one, it could be a "lucky" sample that doesn't...

That's my understanding as well with regards to sensitivity testing. Mine shows that my abscessus is resistant to Amikacin, but this is the most effective drug for me. I've been told they use it to get ideas of what drugs to try. However, it is quite discouraging to see all the "resistant"...

I was diagnosed at age 34 with CF by genetic testing. I had been tested as a child but the sweat tests said I did not have CF. When I got the genetic test results, I found out that I have a rare mutation that results in negative sweat tests for the majority of people with this mutation. I don't...

It sounds like you're having respirology symptoms, but not GI symptoms. If you do have CF, you likely have a less common mutation further supporting the argument that testing the most common mutations is not sufficient. I would ask for a full DNA test.

I agree this has been a good discussion. I'm glad to hear from others on this topic. On question #1, I have never used Ethambutol, Rifampicin or Clarithromycin. My sensitivity analysis was tested for Clarithromycin, but not the other two. I have been taking Azithromycin since I first started...

I use the Philips AVENT electric sterilizer. Here's a listing for it: http://www.amazon.com/Philips-AVENT-Electric-Steam-Sterilizer/dp/B0057ECYS0/ref=sr_1_1?ie=UTF8&qid=1412800646&sr=8-1&keywords=philips+avent+sterilizer I've been using it for about a month and happy with it so far.

This has happened to me before. It will be identified by this other lab. They just need to send it off for a different type of test. For me, this has usually happened with steno. That doesn't mean it will be steno for your son. There are lots of bugs and some of them cause more problems than...

I wouldn't call it rare, but it's not common either. The adult CF clinic I go to has about 450 patients. I'm one of about five with abscessus. My doctor said the UK CF clinics (it may have been one specific clinic) seem to have more abscessus cases, although I'm not sure why. There are are two...

I use a treadmill for 20 minutes each workout. I walk at a fast pace and use the elevation to increase the intensity. I've always heard that cardio is good for bringing stuff up from your lungs as well as lung function. I also lift some weights and do some stretches. My entire workout is about...