Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 Where do I go to find patients who have MAC Baterium or share with others drug plans and if they are helping. I am 65, female, diagnosised IPF 4 years ago. MAC bacterium found early last summer. Want input of MAC, how are others being treated.I don't want to hear about birthdays, oximeters, doctor's appointments. How do I weed out all that stuff and get some real information???P.Hall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 P. Hall I would suggest you google Mycobacterium. It is rare and this is not a site devoted to it so you're likely to find very few members here with it. I cannot locate any forums with high participation on the subject, although if you go to yahoo groups and enter Mycobacterium you will find some with a little bit. This site is for those with Pulmonary Fibrosis and many of us do have similar other diseases and conditions but not yours, unfortunately. Now, I know you're frustrated, but I find your attitude toward us to be a bit inappropriate and hope if you find a forum that does meet your needs you'll understand that what interests you may be different from others. Oximeters are crucial to our lives. We have short life expectancy and so value every birthday more than we ever thought possible. We do care to know about the other's doctors appointments as we are here to support. If you don't want to read that then I suggest you just subscribing "web only" and use the search at the top of the page to find any posts on a particular topic. However, I just did a search on MAC and Mycobacterium and found no posts here other than yours. I know your search for information is frustrating. Here are a few threads on forums I found: http://forums.wrongdiagnosis.com/showthread.php?t=2711 http://www.ehealthforum.com/health/topic75651.html http://apps.ysf-fsj.ca/forum/viewtopic.php?t=30 & sid=bdd5cbe49ceaf203a86738dc000e4993 http://www.thebody.com/Forums/AIDS/Infections/Archive/Mycobacterium/Q133092.html You might also search through the yahoo groups on Tuberculosis. Good luck with your search. Sorry we aren't the right place for you to find what you need. >> Where do I go to find patients who have MAC Baterium or share with others drug plans and if they are helping. I am 65, female, diagnosised IPF 4 years ago. MAC bacterium found early last summer. Want input of MAC, how are others being treated.> > I don't want to hear about birthdays, oximeters, doctor's appointments. How do I weed out all that stuff and get some real information???> > P.Hall> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 excuse me for sounding so irritated, but, how we live, and die, with this terrible decease is real information. I hav'ne been with this group long but I find these emails very informative. (all of them) ken Can't figure it out Where do I go to find patients who have MAC Baterium or share with others drug plans and if they are helping. I am 65, female, diagnosised IPF 4 years ago. MAC bacterium found early last summer. Want input of MAC, how are others being treated.I don't want to hear about birthdays, oximeters, doctor's appointments. How do I weed out all that stuff and get some real information? ??P.Hall Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2008 Report Share Posted September 3, 2008 Lee, I'm sorry you are not finding the information you are looking for in this forum. This is a support group for pulmonary fibrosis so it would be understandable that only a small portion of our membership would be dealing with MAC bacterium. From the lack of response to your earlier post it would seem that we don't currently have anyone on the board who has a diagnosis of MAC bacterium. Please remember that though you are not interested in the posts you described, most of our members are. Perhaps you might consider changing your settings to "web only" so that you can read the posts that match your interests directly from the board and don't have emails in which you are not interested in your inbox. Since you stated in your request to join this board that you do have pulmonary fibrosis, the other posts on this board may be of interest to you in the future. If you are looking for support and information about pulmonary fibrosis in the future, please feel free to check back in. Best wishes to you! Beth Moderator Breathe-Support Age 48 Fibrotic NSIP 06/06 UCTD 07/08 Change everything. Love and Forgive Can't figure it out Where do I go to find patients who have MAC Baterium or share with others drug plans and if they are helping. I am 65, female, diagnosised IPF 4 years ago. MAC bacterium found early last summer. Want input of MAC, how are others being treated.I don't want to hear about birthdays, oximeters, doctor's appointments. How do I weed out all that stuff and get some real information? ??P.Hall Quote Link to comment Share on other sites More sharing options...
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