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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big 3, but later told him not to take any, if he won't take all 3. He had a bad reaction to Rifabutin, which caused chest pains. He asked if there was a substitute for that, but apparently not.
He had 2 CT Scans, one in March, the second in May. The second did show some improvement, but also diagnosed bronchiectasis, which the first Scan did not. He asked for another one this month. Now his doctor told him that he doesn't need another CT Scan at all, and, if anything, he could have a Chest X-ray. A chest X-ray cannot diagnose bronchiectasis so, to me, her response is outrageous. His doctor seems to be very ineffective and doesn't seem to care about his well-being. She never asks how he is, nor offer any solutions to his constant sputum. I'm afraid to ask for another pulmonologist at Kaiser, because I'm afraid they will back each other up, or at least not contradict each other.
Does anyone have experience with Kaiser? My husband wants to see numerous other pulmonologists in other cities and wants me to take time off from work (let alone spending a lot of money since it will all be out of pocket), to make appointments for him (he doesn't work). I simply cannot do so, since I have no backup for my job. I'm willing to travel to one place, maybe Mayo Clinic in Rochester, MN.
If I can stay local, does anyone have a recommendation for a well-respected, knowledgeable MAC doctor in the Bay Area of California?
Replies to "My husband was diagnosed with MAC and subsequently bronchiectasis. His doctor at first prescribed the big..."
Hi the eye doctor took me off ethambutol yesteeds because it started to affect my vision. I have been on the big 3 approximately 1 year and 3 months. I feel really good.....
Hello Shelby,
I'm not sure what cyrithermyacin is? Did you mean Erythromycin or azithromycin? My husband has been prescribed Ethambutol, Rifabutin (big problems with that one), and Azithromycin. I'm glad you're feeling better.
-Joan
Shelby, What was the dosage and how often did you take the two drugs?
i think Clarithromycin in in the same family as the other "romycins"
Did your husband take Clear Lungs! there is a lot of radiation in CTscan that is probably why your Dr dosn't want to take another one. The clear lung clears the sputum!
@joan912 You have an excellent medical center in San Francisco at the University. They are also #1 in the nation for lung transplant survivals. Mayo used to be #1, but lowered because they take even the most desperate of patients. CT scans are very strong and it is not recommended to have one but every two yrs (I think). They can do damage to your DNA. That is one reason they are frowning on him having another one. You can have that CT scan transferred to a different doctor, even if it is to a different institution or clinic. Then it can be read by a different set of eyes. There is another member on our forum who saw a very GOOD pulmonologist there at the University. I will look back on her thread and find the name of her doctor and share her @ with you so that you can converse with her about her experience. - Terri
@sophie1019 So glad to hear that you are feeling good Sophie!
I have an question. I know that hot tubs are a no-no with bronchiectasis/mycobacterium abscesses. But is an indoor pool for exercise a no-no too??? I have a friend who has invited me to do jazzercise in the pool. I told her I would have to let her know if I could do it with this lung disease. I hope someone knows the answer.
Thanks, Lisa @tutti
@tutti , Lisa, I don't know how this old post escaped me. Hopefully you got your answer somewhere. In case you didn't: As a general precaution we with mac are advised to avoid indoor/outdoor pools. 80% of pools tested come nack possitive for various strains of mac. They have found that mac is morphing into a strain that resists chlorine now. Because you are more suseptable to the more serious strain, abscessus, you may want to use extra caution.
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i'm not with kaiser but my parents are and some doctor they like and others they don't. They simply request another Dr. until they find one they are happy with. Don't be afraid to ask for another pulmonologist. We are in the Los Angeles area but the same policy should apply. I would learn all you can so that you can ask all the questions you need. I also was diagnosed with MAC in 2009. I also could not handle rimfampin so i only took the other 2 (cyrithermyacin and ethembutol) I have been negative to MAC for 1.5 yrs so I've been taken off all antibiotics. it's been a month so far and I feel fine, except I have bronchietasis. This is a long process but your husband will get through it and learn to manage the broncheitasis. Make sure he gets a flu, and pnemonia shot, try and avoid catching colds, don't wear yourself out, take immune boosting vitamins. Ask for CT scan at least 1 a yr.