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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Hi Katherine, thanks for your input. I don't understand though if the water is purified how the bacteria would get in it, but, nonetheless, I will not be taking the chance on the water cooler. I guess I'll just stick to the bottled water. Thanks, Gina
Replies to "Hi Katherine, thanks for your input. I don't understand though if the water is purified how..."
@katemn; While in the mist of 3-antibotic medication, doc told me there is no guarantee I won't get those nasty mycobacterium critters again. However by the time I'm finished my sprint of those pills, he said I won't need to collect sputum after I'm through as I've already them. Thankfully the last sputum test, mine haven't grown and I'm glad more specimens are not required. I wanted to ask - did anyone suffer recurrence of MAC? Thanks/Tessie
@tessie, Tessie, FIRST QUESTION: is your doctor an Infectious Disease doctor? SECOND question: ask him .. How many MAC patients have you treated in the past 12 months? Why am I saying this Tessie? Because I am very concerned because you are being told: 'said I won't need to collect sputum after I'm through as I've already them. Thankfully the last sputum test, mine haven't grown and I'm glad more specimens are not required."
Tessie, this is what Dr. Aksamit did for me and I would recommend that you REQUEST IT STRONGLY of your doctor .. YOU are you OWN BEST advocate .. REQUIRE nothing but the best from your doctors and you can quote me!! You go Girl!! Hugs! Katherine
ANTIBIOTIC TREATMENT .. FOLLOW UP AFTER ENDING TREATMENT
It is my understanding that after the antibiotic treatment ends the mycobacterium is still in the lungs but is not "colonizing/growing" .. you become "stable" .. but not really "cured". That is why you need to have follow up appointments with your Infectious Disease doctor that include at least: a sputum culture/Xray/pulmonary tests. At least for me it began with quarterly check ups .. lengthened to semi annual .. then to annual. With the understanding that YOU know your own body best AND you call for an appointment sooner if you feel something is wrong.
As you said, I will inquire further thanks Katherine.Tessie
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@ginak, Gina, I know what you mean about hard to understand .. but myself .. I decided that I would just leave it to the experts knowing those darn mycobacterium are nasty little critters anyway so there are probably going to be a lot of things about it I may not understand fully! Hugs! Katherine