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So very sorry for the lack of compassion. Sure sounds like you have enough sympptoms and positive sweat test. My sweat test was 84 done at age 53. I also had the genetic test done that showed the DF 508 gene and later the second gene was found. But the centers always took me serious and as...

I can say without question that my lifetime of sinusitis has made me feel terrible. No fevers but I would feel totally crummy and missed lots of school and later work due to the fatigue and head pressure and pain from the sinusitis. The fatigue is unbearable. But usually they did find...

I can tell you this. I participated in a study to determine my second CF gene as it was only identified as a 5T varient before. The MAP study (mutation analyis project) came back with the this 5T varient having a 5T TG 12. If the 5 T had a 12 or 13 varient then it was significant when paired...

OMG!!!Be cautious. I checked this on Google and it is more likely to cause tinnitus than the balance loss. Please search Google for info. I found this info in Rxmeds or something like that. My balance was devastated by gentamycin which is the same family as Tobi (an aminoglycide) This could...

Thanks for the great info Stephen. I have had the tinnitus (shrill ringing in my ears since childhood. I cannot remember not having it. But when I was hospitalized in April and May they put me on Vancomycin. Since then the tinnitus has become a constant roar that does bother me. It has not...

I was prescribed this a few weeks ago but still procastinating. So fearful of taking this. Have others had hearing loss from this? Any other side effects? I do have my balance devastated due to gentamycin many years ago. This loss is permanent. Really need help.

If I were you I would take it and watch out for adverse signs. You want to keep as healthy as possible and this is a first step to doing that. I was on it a lot and finally developed a torn rotator cuff twice. The second time I made the connection so no more for me but now IV's are needed...

I appreciate your comments. I was told the the Amakacin neb should cause less problems that the IV but Ricky, I had gentamycin back in 1997 or so and suffered irreversible inner ear damage that left me permanenty without an inner ear balance. So you can appreciate my fear of Amikacin. I was...

I have been prescribed Amikacin via nebulizer and am very afriad to use. I am so fearful of permanent damage to my hearing or balance or other side effects. I was very sensitive to Gentamycin and suffered permanent inner ear balance loss which I still live with today 15 years later. The...

I can relate to all above, everything. I was 53 when finally diagnosed due to a severe sinus infection which was pseudonomas and staff that were both antibiotic resistant. Not one doctor did a culture with all the serious infecions I had all my life until I was referred to University of Penn...

Unfortunately, I just learned that bronchiectasis is a great host and encourages the MAC to grow. Then this forms nodules. Best of luck to you.

I cultured with MAC many years ago but when my lung function started to decline my CF doctor sent me to a ID doctor who put me on the same mix that you are on She did not treat me before as I was doing well and lung function was stable and she felt it was just colonized and not diong damage...

My lung function went down about 10% after a hospital stay and two more weeks of IV's. All I can say is fight, fight, fight. I am making a point to walk and so exercise almost every day. I feel this is my only hope to get back to base line. My CF doctor suggested a pulmonary stress test as I...

I will add my two cents. I was sick with sinusitis all my life and almost died at age 11. I also started school a year late as I was too ill to start school back in 1950. I was finally diagnosed at age 53. The treatments with the Pulmozyme were a miracle as this thinned my mucous so much and...

I think a mom knows best. We all want what's best for our children. It is so difficult when your son has a life threatening disease. So listen to your doctors, follow your own intuition since you said that last time they got to the source of the infection. Actually I am having my first...

Just interested in infection control in other CF centers. In Houston it was very strict and comforting to know that they were doing all possible for this. At my new center (due to moving to another state), I see no infection control except the doctor and techs maybe santizing hands. Baylor...

Autumn, I assume you are looking for an adult CF center. If so, it is well worth the drive to go to Baylor in Houston. I have heard of other CF patients that left the San Antonio center for Baylor since it is far superior to San Antonio. In fact, just this week there was a conversation of...

I am a bit confused. The Houston Adult CF clinic is at Baylor. But Dr. Katz admits her patients at Methodist. They are just blocks from each other. I see my ENT at one clinic and then walk the few blocks to Baylor to see the adult CF center doctor Katz. The ENT admits at Methodist too. TX...

Thanks, Bill, I too have DeltaF 508 and the 5T variant which has a 13 GT which I recently learned is significant as a CF gene when accompanied with another CF gene. It can be either the 5T GH 12 or 13 and be significant. Other 5T varients are not significant. I also have a 9T varient which...

You are so lucky. I just moved from my Houston CF adult clinic and miss them so miuch. They excel in CF infection protocol. Dr Marsha Katz is the most kinowledgeable and bubbly doctor you could ever find. The respiratory therapist Bethanne is superior too. The nurse is Carolyn and she is...