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The US centres of excellence that I hear mentioned most often are the National Institutes of Health in Maryland and National Jewish in Denver. My NTM specialist mentioned the Tyler Texas centre to me the last time I saw him. Because my NTM specialist doesn't see very many CF patients, my CF...

I started growing m. abscessus in 2008. I have been on aggressive treatment for the past 3 1/2 years, but I've not had very good results. I am currently on Cefoxitin IV, Amikacin IV, Clofazimine, Linezolid (Zyvoxam), Azithromycin and Cipro. The meds seem to keep me from getting very sick, but...

I'm a fan of hypertonic saline as well. It can be irritating for some people. I used to do 5% twice a day. Last year I got very sick and couldn't tolerate it anymore -- it made me cough too violently. I've been using 3% once a day, but I hope to get back to twice a day. I stop hypertonic saline...

Hi Zack -- sorry to hear about your GI problems. I was diagnosed at age 34, so I'm familiar with being diagnosed late in life. I've been having increased GI problems during the last two to three years. Mine seem to be caused by a number of differing issues. Since you were diagnosed later, are...

piggylu -- my skin has also been very dry since I started Clofazimine. I started a bunch of meds at once, so I was never sure which drug caused it. I'm someone who has traditionally has had very oily skin, so this has been quite a change for me.

Good luck with your treatment! I hope it's effective in treating your abscessus and that you're not on it too long. I'm three-and-a-half years in and not having great results. I saw your other post about getting a port. I would be interested in hearing how that's working after a few months...

I was diagnosed as an adult, so I've never been seen by a pediatric CF doctor. However, I would agree with the comments above that this doesn't sound like typical care. When I'm in the hospital, I sometimes see one of the regular CF doctors and other times I see residents. For my CF program, the...

My bowel movements never stop entirely. They just are sometimes not enough to keep things cleared out. I take Miralax twice a day every day as well as 45 ml of mineral oil. This usually keeps things moving, although I recently had to do a couple rounds of GoLytely. Your doctor probably didn't...

thisisme -- with regards to your question above, the golightly has relieved my bloating pretty much right after using it. If it doesn't, it either means that I need to do another round to get things cleaned out or the bloating was being caused by something else. I've never had to switch to...

I went on disability three and a half years ago and doubt I'll return to work. I was starting long-term treatment for mycobacterium abscessus and going in IVs for an extended period. I'm still on IVs and disability. My lung function is around 45%, which is where it was when I first went out. I...

I've been dealing with these types of issues the last few years. Bloating and gas could be caused for a number of reasons. You may need more golightly. How many litres (or gallons if you're in the US) did you do? I usually do 8 to 10 litres (2 to 3 gallons) in a day. It's also important you...

I had melanoma a few years ago, so I'm very careful about sun exposure. I wear a hat if I'm going to be out for long and put on sunscreen. I also wear baseball shorts with the 3/4 length sleeves. They hide my PICC line and provide protection from the sun. I know a lot of the antibiotics we take...

I mentioned the "rub off" issue to my NTM specialist and he was not aware of that. I've been on the medication so long, I don't remember how long after starting it that my skin started to "tan" and/or when it started to rub off.

I'm sorry you have to go back on abscessus treatment. I've been on Clofazimine for two and a half years now. I take 150 mg once a day. The skin discolouration for me looks like I'm very tan -- I often get compliments and questions about where I've been on vacation. I know some people end up red...

I've had this happen to me several times -- twice when I was at the gym. The first time at the gym was after I was finished working out and showering. The second time was when I first got to the gym and hadn't done anything yet. I have not noticed anything specific that seems to bring on the...

I have CF but my sweat tests come back negative. I was diagnosed with CF at age 34 by genetic testing. People diagnosed later in life often have milder forms of CF. I have lung problems, but I am pancreatic sufficient. I've also heard of people in the reverse situation -- they have pancreas...

I've had to do clean outs a number of times. They give me a product called "Peg Lyte", which I think is really intended to be a colonoscopy prep medication. I'm in Canada, so sometimes the drug names are different. It sounds to me like this may be a "mini-clean out" compared to what I do. When...

I was diagnosed as an adult, so I never went to a children's clinic. However, they are much more conscience of contamination than they were in the 80's. The clinic I go to puts people in separate exam rooms. Other than spirometry, the staff rotate into your room to see you. They put on a clean...

Your symptoms sound like they could be CF-related. I was diagnosed at 34 and have what is considered a mild form of CF. In terms of testing, I would suggest a genetic test is more important. Some milder forms of CF -- such as mine -- test negative on sweat tests. Once they figured out that I...

I would also agree with the suggestion of office work. You'd have contact with less people than with a retail, restaurant or teaching job which means less exposure to germs. I worked in an office job for 22 years before my health declined. Offices employ people to do administrative type tasks...