Originally posted in Cystic Fibrosis - Adults

Long story, read to end for actual point <img src="i/expressions/face-icon-small-wink.gif" border="0">.&nbsp;&nbsp; <br><br>One month ago I switched CF clinics.&nbsp; At my first visit to the new clinic I cultured Pseudomonas (PA).&nbsp; At that time I thought I had only cultured it once in 2006, and had never been treated for PA via Tobi/Cipro or anything like that.&nbsp;&nbsp; I have however been doing treatments for Mycobacterium (MAC) on and off since about 2008-2009 (long story).&nbsp; Two days ago I found out, by nagging my old clinic for records and scrutinizing everything, that I actually cultured PA there too in 2007 but they never informed me of this or treated me….&nbsp; <br><br>Flash forward to yesterday, one month after culturing PA and beginning Tobi/Cipro… My lung function increased by more than 30% &nbsp; I had always been around 100%+ until roughly 2 years ago at the start of all this "MAC" crap.&nbsp;&nbsp; Prior to switching clinics I had NOT been nebulizing ANYTHING and my lung function steadily decreased for 2 years without my doctor doing anything.&nbsp; The reason I switched was because I finally wised up and decided that the clinic I was going to was just going to sit there and do nothing for me.&nbsp; I was 6 months into MAC treatment and NOT feeling any better…..&nbsp; At the first visit to my new clinic one month ago my FEV1 was the lowest it has ever been in my entire life at 72%… <span style="color: rgb(0, 0, 0);">YESTERDAY is was 108%!&nbsp; </span><br><br>I had always been wary of this "MAC" diagnosis and now I am even more unsure of whether treatment for it was the right decision.&nbsp; 6 months of treatment with no alleviation of symptoms and then one cycle of PA treatment and I feel great!!!&nbsp; The first time I did MAC medication for 6 months it also included a heavy dose of Cipro and I felt better, this time my medication does not include Cipro and wasn't feeling better at all.&nbsp; Cipro treats PA……<br><br>So I ask the new doctor about this yesterday and she said, "Yes first time cultures of MAC are typically treated for PA before we try to investigate the MAC further since the problem can be PA and MAC is so hard to eradicate and the medication is so hard for people to tolerate."&nbsp;&nbsp; <br><br>Finally, my point:&nbsp; Has anyone heard of this protocol to treat for PA upon culture of MAC?&nbsp; Has anyone cultured MAC but been treated for PA?&nbsp;&nbsp;&nbsp; Naturally I am fairly upset about this whole two year stint of feeling like ***** and having no one do anything productive for me.&nbsp; However, I am very curious about others experiences and also would like to inform people in case they culture MAC and want to be sure to ask these types of questions. <br><br><br>

Originally posted in Cystic Fibrosis - Adults

Thinking of getting a new compressor. Do you use it? Do you like it? How long does it take to do your meds? Can you use the Pari LC Plus nebs and tubing? Cost? Did insurance cover it? Any and all information would be great! Thanks!<br>

Originally posted in Cystic Fibrosis - Adults

<P>Hi:</P>
<P>Dont know if I missed a posting, but how are you doing? Are you home yet on IVs?</P>
<P>and is your lung function going back up?</P>
<P>I was sorry to see you were in hospital, your one of the healthiest people here. </P>
<P>Hope things are improving, and your home for xmas.</P>
<P>liz<BR></P>

Originally posted in Fibrosis News

If you’re ever walking the halls at Dartmouth-Hitchcock Medical Center, there is a good chance you could have some company.

Originally posted in Cystic Fibrosis - Adults

Hi All,<div><br></div><div>This has probably been discussed quite a bit already but I would like to know other people's experiences with their breathing treatments. &nbsp; What types do you do, how do you do them, what order, are any mixable, etc? &nbsp; How do people feel when they skip a day of treatment? &nbsp;What breathing treatments are your favorites/must haves, etc? &nbsp;&nbsp;</div><div><br></div><div>I have only been doing breathing treatmentd for a month and I find that I have to nebulize albuterol or else I feel like I cant breath.&nbsp; The albuterol makes my hands a bit shakey for about half an hour afterward.&nbsp;The rest of them I am fairly&nbsp;ambivalent&nbsp;about. &nbsp; Pulmozyme seems like it does nothing. &nbsp;Hypertonic saline is interesting and I like the salt taste. &nbsp;lol &nbsp; I just got the vest and it is quite the scary contraption.</div><div><br></div><div>What are your experiences??? &nbsp;&nbsp;</div>