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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: 2 days ago | Replies (9354)Comment receiving replies
My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011--and probably a number of years before then. As some have noted, it was a constant cough that took me to my internal medicine doctor who sent me for a lung x-ray. She thought it was pneumonia and so I started on 10 days of an antibiotic. The x-ray was repeated in 6 weeks--no change. So I had an MRI--I was afraid it might be lung cancer, but my internist assured me that the findings did not fit that of lung cancer. My pulmonologist reviewed the various treatments for MAC and I decided to wait. But, after a year and the symptoms becoming worse I started on the 15 month 3-drug regimen to which I was very faithful although I disliked some of the side effects.
I am now living with bronchiectasis and have seen lung function decline although the tests seem to reveal I am doing okay. Last summer we visited Yosemite and Sequoia. The elevation was very difficult for me--the first time that has occurred. I know my tolerance for exercise is much less, but I persist in walking daily, yoga, etc.
I am happy to be in touch with others who have MAC and know it occurs more in women than in men.
Replies to "My name is Mariah and I have lived with myobacterium avian and bronchiectasis since 2011--and probably..."
@windy935 Dear Mariah You are in the right team ! We all have our little thing to keep ourself healthy! It is nice to share what we do since it work good for us doesn’t mean it will work for others. The only way to know is to try it the same way we try whatever doctors recommend. As boomerexpert says Lung ecercises is crucial and cardio help keep my breathing normal for me too! I have never taken the antibiotic cocktail when I saw the specialist doctor for the MAC but i have done some research and find Clear Lung by Ridgecrest to clear the mucus in my lungs! I tried it and it worked for me. I also use a good strong probiotic to keep my immune system strong to fight the bad bacteria . My lung docor have also done 2 broncoscopy one on 2014 when they found the MAC and one this fall confirming no more MAC. My doctor said broncoscopy washes the tree bud and clean it from whatever goes in because it is dilated I felt really good after. We must do everything possible to keep ourself healthy. I thank god everyday for the great doctors I have in Canada in a very small province NB. They have a lot of knowledge. With your determination and your courage you will be able to find the right medication for you. Keep up the good work taking care of yourself!
@windy935, I am in the same boat. My lung function has steadily declined year after year. My graph looks like a totally deflated sail ona sailboat. I live at sealevel in S.C. but presently am visiting Tucson, Az. The altitude is def affecting me. I am extremely short winded and cannot walk very far. Maybe 20 ft then I am huffing and puffing.
@windwalker oh boy! You should come back home! I would think the dry air in Arizona would have been good for you. Nicole
@nick52, So far, my trip has sucked royally. I developed mouth pain two days before departure, (I should have stayed home, thought it would pass), then, by the time I reached Oklahoma, the pain was so unbearable that I went to a dentist. He said he could not figure out which tooth it was so he sent me to an endodontist. That dr said I had a disolving tooth under a crown and that it needed to come out; but I'd need an oral surgeon. So, I get to Tucson and see a friend's dentist who took the word of tje endodontist and yanked out my molar, crown and all! Then he says, it vould be TMJ. That was last Thursday. My mouth still hurts as badly as it did before the tooth was pulled. So, now I think it was pulled for nothing and it was TMJ all along. I have been getting by on hydrocodone and 600 mg ibuprophen. I have not enjoyed a single day of my vacation. Am sending my husband along alone for the next week. I am not able to continue our trip. The combined issues of mouth and breathing....I just want to go home!
I am sooo sorry about your mouth. As someone who endured years of teeth issues and now have a mouthful of pricey and problematic implants, I can only imagine how miserable you are feeling! Sending you prayers and positive thoughts!
@windwalker ohhhhhhhhnooooooo unbelievable. Welcome to the TMJ club. I have a good oral surgeon but he live in Portland Maine. I had a major problem in 1985 and 1986. You should have come to Largo Florida to visit me instead lol! I would like to share with you my TMJ experience ( a real night mare lol to find a competent surgeon) if you are interested. Give me a call! Try to do long session of relaxation in the mean time you get home. You can try ice (if it doesn’t help try the heating pad with humidity on your TMJ. 15 min at a time every 2h. Make sure you do relaxation also! With all my love and prayers. Stay positive do not put doubts in your mind only good vibes!
Oh no @windwalker, tooth pain is horrible, I hope you feel better soon.. When I was on holiday I was eating a pizza and bit full force on back teeth, on a olive stone, I froze bottles of water and held them on my face which helped alot. Ended up needing a crown but the ice helped while away.
@windwalker, Terri, I'm so sorry about your mouth. And to be on vacation and it all happen then. I hope you heal quickly. Nan
So I was just thinking if you don’t get relief soon you might want to go back to whoever pulled the tooth and have him/her pack it with medicine in case you are dealing with a dry socket! ( hope that is not the case though)
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@windy935 I too have MAC, Bronch, in addition to RA...Lung exercises are crucial and helpful...I do cardio to the extent I can so I'm accelerating my breathing...whatever works for you!