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Posts (22)

Fri, Nov 29 5:52am · 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

Thu, Nov 7 6:19pm · My bronchiectasis specialist is leaving! in MAC & Bronchiectasis

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

Thu, Oct 31 6:22am · (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.

Thu, Oct 31 6:18am · (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

Thu, Oct 17 8:05pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

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

Mon, Sep 30 10:35am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

You may look into the keto diet because it does lower cholesterol naturally it sounds like a wild thing but if you read the book by Dr. Annette Bosworth MD. It’s very interesting. I am on it now since it is supposed to decrease inflammation. I feel more energetic too.

Thu, Sep 26 6:04am · Septoplasty: How did it impact you? in Ear, Nose & Throat (ENT)

Hi there I had a septoplasty about five years ago and I am 72 and it was absolutely wonderful I even paid another $2000 and had my nose fixed because I always hated my nose but the breathing was was just amazing how much better breathing I had and it was a not very much downtime it was wonderful!!

Thu, Sep 12 9:53am · Extreme fatigue with MAC in MAC & Bronchiectasis

Hi there Frustrating.I believe that if there’s a possibility that you could feel better and I definitely didafter I started the treatments and yes the medications can be rough —-but doesn’t mean that you’re going to get any of the side effects. I was scared but I actually have not had any SE’s and I’ve been on treatment for about five weeks of five anabiotic‘s and I don’t cough 95% as much as I did and I was going through a big Kleenex box every day😫😫 now I don’t ——-that to me was well worth the treatment I am still a little fatigued and tired if I do more than one “bigger” thing a day, but I can contend with that if I take a nap in the middle of the day. Good luck to you in decisions. A Good Dr who knows NTM well, is a Must!!!
I hope you will make a decision best for you!!!!
Sincerely Judy