MRSI can easily be acquired from different sources.But it is my recollection that of a CFer generally acquires MRSA in their lungs from their hospital, clinic, or other CFers. I would really suggest that you ask for a referral or consult with an infectious disease specialist. They deal with MRSA all the time. That is their area of specialty. Although obviously cf pulmonologists encounter it quite frequently. I also recall seeing a new study that indicates a double antibiotic combination can be extremely successful in eradicating MRSA if that is the initial treatment. If it is not cleared out immediately , even the double combination is successful in only a small percentage of cases. So yes, eradication is extremely difficult but possible. I have found that the attitude of most CF clinicians is that if MRSA is not causing exacerbations, then they leave it alone. When it causes problems, then they treat. Unfortunately, I am also aware of studies that indicate MRSA decreases the life span of a CFer by an average of six and a half years. So although it's common, and rarely treated, it is worth trying very hard to eradicate initially. I am dealing with lots of dic appointments today but i will pull the references for yOu soon. In the meantime, I strongly suggest you call and make an appointment with an infectious disease specialist as well as your pulmonologist to indicate that you want to be more aggressive. I would also ask your CF center for the date on which you first cultured MRSA.
As for the issue you're having with getting information and records. I had a similar problem which took me almost two years to improve. I constantly requested the records through my pulmonologist whenever I was at visits. I called and discussed the issue repeatedly with the nurses, office manager and patient advocates. I also wrote the Hospital Administrator and even received a call back. And I also contacted the Hospitals Legal Department. I met loTs of resistance and excuses as well as agreement. But it wasn't until very recently that I walked into our Clinic appointment and was handed a copy of the most recent reports as a new normal. You can always get a copy of your records by written request to the Records Department, but I suspect you will be charged for those. The kind of information you are wanting - current culture results, PFTs, x ray or film results - should be baseline info for everyone. Keep pressing, potentially even contacting the Cystic Fibrosis Foundation that sets the standards for CF Centers.
Blessings.
