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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that got progressively worse). For 4 yrs, 3 months (Feb 2008 - April 2012), I was on the 3 standard drugs for MAC . I had some side effects from the drugs but gradually they went away or I learned how to deal with them. If my routine got out of whack (like on vacation) I suffered.
Over the years, I grew to feel like my old self - although as a high energy person, I was somewhat sluggish from the medication. Last April, I negotiated with my pulmonologist to go off the drugs. What a relief! Was like a weight had been lifted . . . I felt much lighter and less sluggish. While my MAC was not gone, my lesions had shrunk over the years of antibiotics. I considered the MAC as hibernating or resting!
Eight months later (December 2012) I began experiencing the cough (which at times results in spasms) and tiredness. Since Feb, I have been on two different antibiotics from my Internist - to rule out a severe sinus infection. No dice! Yesterday (March 2013) I saw my pulmonologist who, before assuming it is MAC and resuming the meds, wants to do a lung lavage and CT scan. Will do this within the next two weeks.
Incidentally, my Internist did a lot of blood workup recently and my Vitamin D is very low. Am now taking 50,000 IU for 12 weeks and then repeat the tests. My pulmonologist yesterday mentioned there is some connection between Vitamin D and lung issues but it's not real concrete yet.
So my MAC appears to no longer be 'resting'.
I will follow this blog with great interest. I live in Wisconsin, in the part of the upper Midwest where MAC is found. Yet MAC is not found in some other Great Lake states. Sure is a mystery.
I WOULD LOVE TO GET IN A STUDY WITH OTHERS WITH MAC!!!!!
Replies to "I was diagnosed with MAC in Feb 2008 (after having intermittent symptoms for 3 years that..."
Hello @windwalker,
I'm replying to your two questions from 4 days ago ... sorry for the delay in answering.
(1) Am I a Mayo Clinic patient? No, I live in SE Wisconsin and have been treated at Froedtert Hospital which is affiliated with the Medical College of Wisconsin. . . they're very knowledgeable about NTM/MAC. Are located 90 miles north of Chicago and yet SE Wisconsin is a hotbed for MAC, and not Chicago. Go figure!
(2) Was that lavage treatment a 'whole lung lavage' where they actually run liters of saline through your lungs? Yes, that's what they did and then suction out the fluid and analyze the results. That way, they get cells from throughout all areas of your lungs. Totally painless.
Paula
How are you doing Paula? I have MAC also. I have had low Vit D as well. It is better now. But my B6 is low now. So I am taking B6. I was in remission for 6 mon but it is back. I am in Indiana. I am looking for a doctor that is knowledgeable about this disease have you had any luck?
@donut, it is important that you read through the past pages our of Forum so that you educate yourself about our shared MAC disease .. THEN you will be able to do your 'due diligence' in choosing a GOOD Infectious Disease doctor .. DEMAND excellent care .. KNOW what testing SHOULD be done .. WHAT AFTER care should be done. REMEMBER @donut, NO ONE cares about your body the way you do .. YOU must be your OWN best advocate .. BUT without REALLY understanding our shared MAC disease .. you will NOT be able to advocate for yourself. So you go girl! Educate yourself .. ask any questions after you have read the pages .. but I think you will pretty much answer your questions by reading. Hope this helps! Hugs to you! Katherine
I have recently been diagnosed with MAC.. Interesting... my Vit D level has been very low and I have just been prescribed 50,000 units one time a week. Did your Vit D level return to normal after this regiment? I am sorry to hear your MAC has returned.
See the discussion i just posted. I am kind of in your situation.
Hi Paula I was wondering how you are now with Mac I was just diagnosed with MAC 2 weeks ago I’m now on medication for it it’s an inhaler I take through a nebulizer I’m new to all this and very nervous at the same time I’m scared actually is there anything you can help me to feel better
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Hi Paula, are you a Mayo Clinic patient? And was that lavage treatment a 'whole lung lavage' where they actually run liters of saline through your lungs?