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Posts (25)

46 minutes ago · Pulsatile tinnitus in Ear, Nose & Throat (ENT)

Hi I have that happened to me also in the evenings and it almost hurt and the jumping in the air so when you go to the vascular surgeon would you let me know what he tells you thank you so much

Dec 17, 2019 · Dry mouth: Any ideas on how to help? in Ear, Nose & Throat (ENT)

Hi @duchess11 I have a dry mouth almost continually it drives me crazy but I alternate water and nestle splash a water flavored with lemon, strawberry or orange that really makes mouth feel feel good and cranberry juice and lemonade is Good. All very cold🥰🥰

Dec 17, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

That is fantastic news!!—-Did you have a cavity in your lung when diagnosed??? are you not coughing or SOB?? You probably aren’t but I was just wanting to see someone that is so fortunate of not having the organisms that you are able to be symptom-free. I would presume that is just wonderful!!. Thank you so much.
I just had surgery about four days ago and my right upper lobe Of my lung was removed so I’m hoping that it will help my symptoms and I will be a stopping coughing in the future and puttinga Me in remission for a couple of years🙏🏻🙏🏻🙏🏻🙏🏻 I am still in hospital at the Univ of Colorado. Laparoscopy but still major surgery.

Nov 29, 2019 · Wanting to know anyone’s experience with drug: Imipenem in MAC & Bronchiectasis

Hi everyone!
I have Mac and abscessus and twice the doctor has ordered Imepentin & give it twice a day. The infusion center said that it is not on their formulary But can give it twice a day which is extraordinary (2x/day) my experience. Humana through my part D —IV’s at home Is way expensive(Thousands) and I can’t afford it. My Dr at NJH Who has been a doctor there for a long time is shocked that I can’t get this paid for. It seems that Medicare should be the same for everybody everywhere especially in the Infusion center under Part D
But if anybody is getting it or has gotten it in the past, I would be very interested in knowing where that was. Thank you so much I just want to get well. This med Is evidently very very good for abscessus Judy

Nov 7, 2019 · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

Dr Griffith is there and he is excellent w/NTM I am told

Oct 31, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I have been on Clofazamine for about a month and a half now and I have not had any problems with it —I live in Florida so I have a tan so if it’s coloring my skin I don’t know I haven’t had any kind of reactions with it at all.☺️🤞🤞🤞🤞🤞 I always take it with food like it says.

Oct 31, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Anniepie!! I went to physical therapy to help my coughing and incontinence but when it came down to it I was just coughing so much and so hard all the time (I use to go through a Big box of Kleenex) in a day for the last year until I started therapy in August —5 antibiotics—3 oral and 2 IV’s for 2 months. I wore a # 6 Always—-bladder discreet pad —-I now just continue with a much lighter pad because I don’t want an accident and I believe that coughing is a good thing to get that stuff out of your lungs. Good luck—to all of my sweet confidantes —thanks for sharing❤️—I HATE coughing🥵🥵🥵 Judy

Oct 17, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Kind of mean of fremglannd3. Just reporting what I read.