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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
I joined the discussion last year but have not been an active contributor. I was having problems deciding whether to go on meds. I am still deciding. CAT last week showed increase in MAC but increase in breathing capacity...go figure. I guess I don't feel as bad as most of you because choosing to be nauseated, fatigued etc. on meds doesn't make sense to me at my age. (79). I still exercise, travel, garden, I kicked RA, diverticulosis, breast cancer, neck surgery etc.(just one antibiotic for 10 days had me throwing up and left me with yeast infection after diverticulosis), I yell at the MAC to leave my body daily. Maybe I can kick this also! As long as MAC doesn't have me incapacitated, I will continue on my pathway sans meds much to my lung spec. dismay. Blessings to all.
Replies to "I joined the discussion last year but have not been an active contributor. I was having..."
Hello @ruhdesb (do you have a first name .. much more personal!) Welcome back .. we're glad you're here! Really the decision when/if to go on antibiotic/or NOT is a puzzle .. a GOOD Infectious Disease doctor that treats MAC patients can help you make a wise decision for YOU! You have been through a WRINGER with your health already .. AND unless the mycobacterium is/are colonizing and all the other factors are not there .. I don't think a knowledgeable doctor WOULD tell you to go on the antibiotics!
You said "CAT last week showed increase in MAC " .. I think if I was sitting in your shoes feeling the way you do . . I would request quarterly check ups and monthly sputum cultures to see just HOW RAPIDLY the MAC is increasing. THEN with that comparison under your belt .. I think you could make a good decision for your own health. IF you DO decide to go on the antibiotic treatment .. if you read the past pages of our Forum .. you will read how to avoid yeast infections with probiotics .. all the different things you will need to do. Your only responsibility is to your own body .. your own health. Educate yourself to your disease .. think through your options .. ONLY YOU can decide what is right for you and your body. Whatever your decision .. we will support you. Hugs to you! Katherine
I was on probiotic with diverticulosis treatment and it didn't stop the infection. I have read and reread the forum. Infectious disease Dr. said no to antibiotics at my age, Pulmonary Dr. is the one pushing it, Gut Dr. said no...so I am pulled in many directions. I just figure if I am not that miserable I'll will stick with what is. Utter fatigue seems to have subsided so as long as I can be mobile and take care of myself I won't choose the meds. My name is Ruth...20 years free from RA flareups. A miracle here in Santa Barbara. I note the high concentration of MAC in my area...has anyone at all mentioned chemtrails that are so prevalent these past years. I know my system was compromised by the RA meds of 10 years AND I live about 4 months in Mexico in a very very windy dusty place....so lots of ways I could have contacted MAC. How do I stop all the notifications from Mayo Connect replies?Ruth
Never mind....I fixed the notifications.
@ruhdesb, Ruth it sounds like you are really on the right track with your decisions. Personally I would listen to my Infectious Disease doctor .. they know more about MAC . if they say No .. I'd run with that .. PLUS you prefer not to. Why go any further?! I am age 73 so I know decisions are made on a lot of things including age. Good luck to you .. come back whenever it feels right .. we will be here! Hugs! Katherine
Ruth, I was told:
"the volume of emails from Connect can get overwhelming at times, especially when dealing with your health. You can control your account settings here: https://connect.mayoclinic.org/account
You can: - Turn off all email notifications
OR - Select to receive only those groups and discussions you follow
Please let me know if you need further help in how to do this, but writing to me here: https://connect.mayoclinic.org/contact-a-community-moderator/
PS: You can also click unsubscribe at the bottom of any email you receive from Connect.
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Welcome back @ruhdesb. I moved your message from Lung Health to this active discussion in the newly formed MAC group on Connect https://connect.mayoclinic.org/group/mac-bronchiectasis/
As a fighter, we welcome you to this amazing group of fighters. You might have MAC, but MAC doesn't have you.