Long-term Antibiotics for Bronchiectasis & MAC

Posted by pejohnston @pejohnston, Feb 26, 2018

Diagnosed w/Bronchiectasis in 2008, MAC in 2011 and have been on many medications since then. Under control for several years, but reinfected a couple of years ago while on antibiotics. My body became somewhat immune to some of meds I was on. I am now taking several more drugs that have pretty significant side affects. Fortunately, I’ve been okay with them. Anyone else been on antibiotics for this length of time?

@jkiemen

Which antibiotics are they? Have your CT's been stable?

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@irene5, A very strange coincidence….

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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There was asbestos under the cracked floor tiles and in the registers. ( probably other places as well) I frequently cleaned/vacuumed my own classroom! The custodians loved me!

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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Has asbestos ever been discussed with MAC?

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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Irene, the Reserve Center was inspected and FAILED years before I volunteered when over 1000 people were suddenly called to active duty. The heat registers were covered with gross wads of dust so thick yet this was never corrected. People in this unit had Bell's Palsy, one had a temperature in the low 90's and I developed Sarcoid and possibly the MAC infection in this filthy area. As the 80 hour volunteer time progressed, I became sicker and sicker. What is painful to remember is our health insurance and the company doctor telling me, sarcoidosis had no need for treatment. It goes away on its own. What we found out was we had NO Pulmonary doctor as part of our horrific program. A year or so before, I came back from NY/CT with Lyme Disease and I called the County Medical Director who spoke to me at length. It was this doctor who first got me admitted for an ER visit at the U of M hospital in Ann Arbor. I had sarcoid in the lungs and eyes. My PCP refused to follow any directives and a major health insurer refused to pay the $8000.00 plus dollars for the needed care. The state tried to step in but the insurer reminded them, that the huge company was set up in Delaware – a state that allows for gross contractual agreements. At my husband's company, this dramatic change came about in just over a week. The company employees were angered by the wait list for people on chemo therapy. The company doctor made the most awful presentation. Doctors were not under an HMO plan but instead were rewarded monetary for the less spent in insurance care.

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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One other thing – has anyone been told that the fever and effects of MAC was due to a psychological issue? I was sent to a psychologist when all I could do was to sit up like a "Humpty Dumpty." When the psychologist finally saw me, I was running this temperature and he told me, this was not an issue for him with the weakness and fever. My husband didn't know what to believe as he believed the PCP that this was a psychological issue. Our neighbor who is a lawyer/head of inpatient Pharmacy for another hospital gave us all his texts as he saw what was a dramatic physical change in me. My husband is an avid reader yet he refuses to read about MAC, Sarcoidosis and Achalasia. I used to teach tennis, swimming and diving but this stopped because of lack of energy 25 years ago. If I have a sheet and a half of allergy meds. I think being prescribed wrong meds has had its' toll.

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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Well that’s just awful! I’m certain the environment my husband and I were in for so many years was a precipitating factor!

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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Well my PCP suspected I might be depressed because I retired when I explained all my symptoms. I was fortunate my daughter’s husband’s brother is a doctor and ordered a CT scan. And the rest is history!

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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My brother wanted me to come out to CA where he would order tests but one good thing was the U of M doctor who was enraged by what he saw. He really had a wonderful personality but was so angry with my history and the unwillingness of a severely alcoholic PCP to follow anyone. After diagnosis, the medical plan we were under did not allow one to go to ER without his permission. My children and I developed severe food poisoning. Again, U of M treated me, with 12 IV's throughout the night of seizures. Our son and daughter were very ill and in the ER. Thank goodness, we just went to a hospital that reacted. Have you ever been to the Mayo Clinic?

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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We discovered Radon in house as well. Still have some but not a level 9.

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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@macjane Our house was built in the 50's. After my diagnosis, I ordered a radon kit from the city. The result was below harmful range. But we also have old tiles in the basement and we think they contain asbestos. From what I have read, if you don't disturb them, you should be safe. So we haven't done anything and simply leave them alone. There are just the two of us living in the house and we don't go down to the basement often, it is not difficult to keep the tiles undisturbed. But if it is an area with a lot of traffic like what is described here, the old flooring, ceiling tiles and even insulation and pipes can be very hazardous.

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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Thanks for your info. In a house like ours built in late 80's, you had to have sump pumps. These can be the source of the problem even though we paid to have this corrected, it will never be fixed. It is very discouraging as you can live next to people without a problem and then get into a house like ours.

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@jkiemen

Which antibiotics are they? Have your CT's been stable?

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@macjane , What a horror story!

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