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src3acs (@src3acs)

Extreme fatigue with MAC

MAC & Bronchiectasis | Last Active: Sep 15, 2019 | Replies (310)

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@windwalker

@src3acs, Hi there, and welcome to our group. YES! MAC & Bronchiectasis definitely cause extreme fatigue. I combat it with .05 mg of Adderall, (I have ADD) I am prescribed 20 mg, but take only a quarter of the dose and I sometimes use ginsing with royal jelly (bee pollen) that comes in the little bottles. That gives you stamina to go all day without feeling hyped up. The days that I don't use these are spent on the couch all day. My spirit is rearing to go, but the body says "absolutely not". The first important thing I can tell you is; it is crucial that you see a doctor that knows a great deal about this disease. Most doctors are 'old school' and follow the same course of treatment. You also need to see a good Infectious Disease doctor. I was diagnosed in 2005 with MAC. (I had bronchiectasis also, but was never told that. It came up in old dr. reports that went back to 2001.) The doctor wanted me on the BIG 3 antibiotics, but I opted not to. I made that decision after getting a second and third opinion. Plus, I did my homework and found that the drugs can be toxic and hard on your other organs and only had 50% chance of working and that despite treatment; the mac comes back later eventually in many people. After refusing the usual treatment; I was put on Azithromycin and Ciprofloxacin for several months. That knocked the mac down to where I was no longer sick. I should have been routinely tested since 2005, but due to my ignorance and doctors not being on the ball, I was not tested again until 2013. During that eight years I was not treated or tested; my lung function slowly deteriorated. I believe that was due to bronchiectasis. I went to the Mayo Clinic in Jacksonville, Fl. where my doctor there had a different way to treat MAC. He put me on monthly doses of alternating antibiotics. I would do 10 days of ciprofloxacin one month and then 10 days on Doxycycline. I did that cycle for three years and I saw improvement in S.O.B. and no coughing. Today, I have good days and low energy days. I do not cough. My rate of decline is very slow, so am hoping we are slowing down the progression of bronchiectasis. Because this is getting long, I will start a new reply to you about getting treatment.

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Replies to "@src3acs, Hi there, and welcome to our group. YES! MAC & Bronchiectasis definitely cause extreme fatigue...."

Would you ever push for Cleveland Clinic? I am at the University of Michigan but could be old school.

@macjane, Cleveland Clinic has an excellent reputation. You can go to their site and see if they have mac/bronchiectasis listed, or look up their pulmonary doctors in the directory and read about what they specialize in. The Mayo Clinic in Rochester is also known for treating mac.

What was the dosage of each of these drugs? Would you take them 10 days in a row, or every third day? Would the same regimen be for each drug? Cipro one month then doxycycline the next? My husband's major complaint is extreme fatigue, too. We're going to see Dr. Aksamit in April, so maybe we'll find out about a new therapy.

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