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

There is a site called Inspire it is thru . They have many topics but many
Mycobacterium topics and followers
[image: American Lung Association]
Living with Lung Disease
Lung
infections and diseases support group and discussion community

– AMERICAN LUNG ASSOCIATION
– HELPLIN

Hello Dixer, you are SO right! It is helpful to explore any/all credible
resources to help us understand our disease .. and find support on our
journey. I also follow the American Lung Forum. Below is the link in case
you might find it helpful. It is important to only seek out credible
resources .. too much misinformation or outdated information out there ..
be careful what you read!

Take care on this journey .. but know we are all on it together!

https://www.inspire.com/groups/american-lung-association-lung-disease/discussion/alternate-therapies-for-mycobacterium-avium/?page=last#replies

Hi Ehliny, I saw your post earlier about the twice-daily saline solution treatments to induce coughing. Other than going to the Army clinic to inhale the saline solution to produce sputum cultures for them (because they thought I was perhaps cheating on my sputum tests or something). I am happy to say that I do not have to do the nebulizer on any type of regular basis. But it was a bittersweet victory of demonstrating my proof to the Army docs that it was my own true sputum producing the MAC, I was also coughing up blood because the saline was irritating my airways. This episode was 08-11FEB16, and on 25FEB – the first culture had already come back POS for MAC.

My pulmonary doctor at UNC had suggested a flutter device to help break up the congestion in my lungs. I still find that exercise (even walking) works BEST.

To your next comment about treatment – MAC is essentially an emerging disease in that the symptoms and total body effect are far-reaching and may at first be subtle or severe. Mycobacteria has no place in the human body – this species is among that which causes tuberculosis and leprosy. Although M. avium is different, a relative to these more aggressive species of mycobacterium, it is just as dangerous it its own right. If you have tested positive for MAC, and your providers are hesitant (or ignorant about mycobacteria avium colonizing within your body) on developing a treatment plan to eradicate the fungus-like infection in your lungs – other than just trying to have you cough it up – you need antibiotics.

I have been in contact with my Congressman for nearly eight months now to get back on the antibiotics that my Army doctors stopped after only five months of treatment (with only 2 antibiotics). All sources say three to five antibiotics for 12-18 months of treatment with life-long follow-ups. There is a bounty of information out there about MAC. The National Institutes of Health is a good source. My doctor at UNC said some of the patients that come into his office for MAC treatment do not partake in the antibiotic treatment, that some sub-species of MAC have become too resilient to antibiotic treatment and the infection cannot be stopped – but managed with exercise, diet, productive coughing, etc. When the symptoms such as fevers, night sweats, or blood-work anomalies are introduced or in occurrence with the infection your treatment must be re-evaluated.

I hope this helps.
Best wishes,
Yours truly,
Melissa

All good information. I have had MAC for about two years now, but so far
not a great lot of distress with it. As I have rather severe reflux
problems it is hard to tell what is cousing the most distress. But so far
nothing that i can’t live with and have quite a good life for an 86 year
old. I just got back from a 3 block walk at 5 PM. Am wintering in Arizona.

Great help – thanks!

I also have severe reflux disease and often cannot tell if my coughing (fairly violent) is the MAI or the reflux.

johnik and ehliny, I also have GERDS, reflux disease, I take the medication Aciphex which for me seems to control my symptoms. I have tried others but this is the only one that has helps.

Also what has helped a LOT has been elevating the head of my bed 5 inches. It can be done just by getting
dorm bed risers (http://www.amazon.com/Black-Risers-4-Pack-Stronger-Support/dp/B0010KXDUI )

Basis information:
If you’ve been waking up at night with heartburn, here are tips to help you sleep better:

1.Raise the head of the bed by 4 to 6 inches, so you can sleep with your head and chest elevated. …
2.Eat meals two to three hours before bed, since this will reduce the risk of nighttime heartburn.

More information at:
http://www.webmd.com/heartburn-gerd/features/tips-for-sleep-without-heartburn
Good luck on our shared journey!

Hi I was just wondering if you are still Mac free, and what antibiotics & amounts worked for you? Do you now take any precautions to avoid getting reinfected like boiling drinking water?

Hi thanks for all your posts, does the medication stop the mac from getting worse at all and stop bronchiectasis from worsening or forming? or is it gradually getting worse? Im in New Zealand and my doc is going to a conference on MAC in Seattle in May so hope they have some new info.

Hello heathert,
From my experience the antibiotics DID stop the MAC from getting worse! It
took time .. but I finally had 12 months of negative cultures after 30
months of 4 antibiotics. Keep in mind I also had TWO mycobacterium’s ..
not just one. Also remember MAC can only be “stabilized” .. NOT cured. In
terms of the Bronchiectasis .. I do not have that answer .. have never
asked the Doctor. If you google it you will find a great deal of
education. Just one source is:
http://www.familydoctor.co.nz/categories/chest-problems/bronchiectasis-a-patients-guide/
Personally I have found a lot of my coughing stems from various causes:
GERDS .. sinus issues causing post nasal dripping .. as well as the
Bronchiectasis. All these things I think resulted in a diagnosis of:
Reactive Airway Disease. I absolutely did not understand this .. positive
my coughing was caused by an allergy to dust mites .. UNTIL an allergist
tested me .. nope .. not allergic .. BUT told me this:

If you get hit on the head .. you are NOT allergic to being hit on the head
.. but you DO REACT to being hit on the head! SO .. Reactive Airway
Disease .. I REACT to MANY things .. and cough cough COUGH!!

I think you will find that many internists/doctors are not well versed in
MAC. GOOGLE/READ all you can until you can educate YOURSELF .. you are
your OWN best advocate!! Good luck on our shared journey!
* Katherine*