(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

No appointment with the Pulmonologist has been made as of yet. Today I learned that the Pulmonologist is out of the office until next Wed. I asked the receptionist to message the doctor and ask him to review my husband’s report and indicate if we should see another doctor. I am considering making an appointment with an infectious disease doctor if I can without a referral.

@suzie2017 Here is a helpful tip for you: get a print-out of the lab results and ask for the suseptabilty test to be included. If a suseptibilty test was not done, (then that would be your first clue that your present dr isn't familiar with treating MAC.) Always keep a file with EVERY lab test result. That way you can look at it and know for sure what is going on, and you will have the hard copy to take to new doctors and discuss their interpretation of it. Another important question to ask about the lab result is 'how many colonies grew?' That question is important because it gives a clue to the bacterial load and can determine the degree of illness. Most private practice doctors use local labs like Labcorp, etc. They do not do a complete test on samples. They do not identify the mac specie or the bacterial load, and sometimes not a suseptibilty test. Some pulmonolgists will send the samples to NJH for proper testing if you request it. I recommend seeing specialists at a non-profit research clinic like The Mayo Clinic, John Hopkins, UCLA, MCV IN Va and others like these in your area. These places have cutting edge equipment and knowledge and the best care. I hope this tidbit helps.

@sophie1019 It is recommended to soak your showerhead every 6 months in vinegar to kill any possible mac that be colonizing inside. You can fill quart size baggie with enough vinegar to cover the showerhead and use a large twist tie to hold the baggie on it. Leave it to soak for 3 hrs. Or you can take the showerhead off and soak it in a bowl. There is a list of topics you can find when you click on the word 'bronchiectasis/mac' for our group. If you schroll through, you will find a post called 'How to Prevent Re-infection of MAC'. It talks about the shower, and hotwater tanks, etc.

@megan123, Same here. I just do a quick cool off dunk and keep my head away from the water.

@lindam272 Thank you Linda. Those are excellent tips!

@sophie1019 Sophie, I was put on 500 mg doxycycline 2x a day for 10 days on alternating months. Drug is changed to 500 mg 2x day of ciprofloxacin for 10 days on the off months. I did this treatment for three years. It kept me healthy during that time with the exception that I caught pseudomonas at the end of the third year. Then, the doxy was switched to inhaled tobramycin. The pseudomonas was cleared after one month on the toby. I will be seeing my Mayo dr in June and see if he wants me back on the old regimen. My lungs are severely damaged so I have to be on antibiotics for life.

@nick52 aFib is atrial fibrillation-it’s an irregular heart beat that can cause a stoke. As they explained it to me, there are times the heart doesn’t have a full beat, it just flutters. This can cause a clot to form in the heart which could then get pushed out when there is a full beat. I was first put on a blood thinner to protect against that, which is what I thought caused, or contributed to the coughing up blood. I have had an ablation procedure which fixed the aFib so no more blood thinner. But I have read bronchiectasis can cause coughing up blood.
I don’t take any type of probiotics. I thought that was only to help your stomach if you were on antibiotics. To be honest, I don’t really watch what I eat. I should be better about that, and I have tried but I go back to my old ways and eat what I want. I do notice dairy, gluten, tomatoes and sauce do cause more mucus and more throat clearing, but, I still eat those things. Just not as often. I have also had a video fluoroscopy to check my swallow. Everything was normal and I do not aspirate any food or liquid. I’m pretty sure the bronchiectasis came from many years of smoking and growing up in a family of smokers which damages the lungs.
The Aerobika is a breathing device. You blow into it and it flutters, and vibrates the bronchial tubes to help move the mucus out. Sometimes it works, sometimes not. But I still do it twice a day, total 50 breaths in 5 different positions.
Who knows what’s best to do? I don’t think the doctors are even sure. Whatever works for each person and hope for the best.

@suzie2017 I agree. I often say it’s like a science fiction disease. Who could believe you can’t drink water, or shower, or swim. It’s like being allergic to water!! I’m sure there are “conspiracy theorists” who would think it is some kind of government plot. Who knows!

Thank you for responding...

@ginak Ha ha! I am such a weirdo. That conspiracy theory actually did cross my mind! I guess the mega rich don't want to take us to Mars with them!! LOL