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Jul 26, 2018 · Practical questions about nebulizer, shower head filters & gargling in MAC & Bronchiectasis

@windwalker
I am referring to the actual nebulizer.
I ended up not needing to know. I took the script to Walgreens and it was denied. However, they researched and it is covered under medical, not pharmacy. They faxed the script to the proper place. I had a zero copay and the company called me and advised me it will arrive today or tomorrow. If you can, look for a Walgreens specialty pharmacy. They have information online that explains what they are. They are so helpful and they are not busy. I wouldn’t have gotten my nebulizer free at another Walgreens. I would have just been told
It wasn’t covered and I would have paid for it. The same May be true with the saline. I will let you know if it goes through.

Jul 25, 2018 · Practical questions about nebulizer, shower head filters & gargling in MAC & Bronchiectasis

I saw my infectious disease doctors and my pulmonary doctor at Mayo yesterday. My colony count is down from 14 to 5. I am on the big three, and my pulmonologist seemed to think it will help to add a nebulizer. He gave me the prescription for that and the saline and for combivent. I do not know if my insurance will pay for this or not. Before I check, how did others go about filling the script, and what brand do you recommend. Thank you.

Jul 24, 2018 · The psychological aspect of dealing with bronchiectasis and MAC. in MAC & Bronchiectasis

I am treated at Mayo in Jacksonville. I have severe Crohn’s and MAC. I’m on Remicade for the Crohn’s. I’m on the three antibiotics for MAC. I have been being treated since being hospitalized in December, and I am still growing MAC. I work full time as a teacher. For the last few months, any anxiety that is sudden causes severe muscle spasms in my mid/upper back. I am wondering if this is related to the MAC, especially because it is right behind my lungs. Does anyone else have this, because I never had it until I got sick. I would describe the pain as a ten on a one to ten scale, but once it is over it doesn’t come back until something scares me again. It is very disruptive at work, because it means I cannot defend myself
in a stressful situation, due to the pain. My job is very stressful, and I need to be able to react. I was never like this until I got sick. As I understand it, applying for disability has no guarantees of qualifying , and I cannot afford to be out of work for the required time limit before applying anyway. Thank you all If you can share any personal experiences with this, and please share what helped you, if anything.

Jul 23, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Yes. I am on Ethambutol, Rifampin, Clarithromycin. I have severe Crohn’s. I was able to start Remicade in January. I honestly think Remicade has helped my lungs as much as it has helped my Crohn’s. The doctors at Mayo had told me it probably would. Remicade has given me my life back.

Jul 23, 2018 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I am wondering if anyone knows what a Good colony count would be. I’ve looked all
Over the internet for the answer. My infectious disease doctor at Mayo called me last week
And said my sputum test grew 9 colonies which was improved from 14 last month. So, would a healthy person grow any colonies? How does 9 look for good results?

Apr 22, 2018 · Antibiotic side effects in MAC & Bronchiectasis

I’m on the ‘big3’ for MAC and I have severe Crohn’s disease. I’ve not taken them all week because I have such a miserable yeast infection from them. I went to the doctor in March and got a treatment, but since I keep taking the antibiotics the yeast does not go into remission. I take probiotics, and have many creams. I cannot get any rest because of the yeast. I have only been on the MAC treatment since December. How do others handle the yeast infection from the treatment?

Jan 14, 2018 · What causes the bacteria to grow in some people and not other? in MAC & Bronchiectasis

Hi,
I was diagnosed with Crohn’s at about age 51. When it flared again in 2017, I was going to be treated with Remicade. A routine lung X-ray found the nodules. That led to the bronchoscopy and the diagnosis of MAI. It has been difficult because the MAI had to be treated before I could get my Remicade. I was hospitalized five days at Mayo for the Crohn’s and yet I couldn’t get the Remicade because of this stupid MAI. I just finally got my first Remicade treatment January 4 because I had to complete 30 days of MAI treatment first. I had absolutely zero lung symptoms. I still don’t, and yet I’ve got to take the medicine for 18 months. To top it off, my dosage of the three drugs is about four times stronger than anyone I’ve ever read about. Plus, y’all keep saying you take the three drugs only three times a week? Not me. I have to take all the drugs every single day.

Jan 14, 2018 · What causes the bacteria to grow in some people and not other? in MAC & Bronchiectasis

I am 62, and I am an elementary school teacher. I have had bouts of pneumonia and bronchitis in the past. I have Crohn’s disease. I believe there is a connection between the two. My doctors agree. This has been extremely difficult because the MAI prevented my getting the drugs I need for my severe Crohn’s.