← Return to (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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@heathert

Hi all , I have just been diagnosed with borderline Asthma(as I only have a small cavity and some nodules she doesnt think imy MAI should cause shortness of breath) and put on Seretide inhaler, the seretide instructions say not to take if you have TB or serious infection, as NTM is similar to TB and an infection, I am concerned, does anybody else on here have asthma and on an inhaler? Think I will call the GlaxoSmithKline and check what they think.

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Replies to "Hi all , I have just been diagnosed with borderline Asthma(as I only have a small..."

Hello Heathert, for me .. Asthma really runs in my family .. father, mother, grandmother and great grandmother .. so when I was initially diagnosed with Asthma and put on various inhalers I was not surprised .. BUT it was NOT Asthma .. it was REALLY Mai/MAC that was finally diagnosed with a sputum sample. I can only tell you that for me the various inhalers did not help but instead triggered various side effects .. especially migraines. For me currently I take two puffs twice a day of both Qvar and Atrovent. For me they work .. BUT everyone’s body is different. My advise to you is do your “due diligence” .. and don’t give up until you find an inhaler that works for YOU!! There are SO many out there!! Just google them .. you’d be amazed! These are just some of the ones I tried that didn’t work for me .. Albuterol, Xopenex HFA, Advair,Pulmicort, Asmanex! .. and see I didn’t give up till I found what worked for me. That is just what you will have to do. Work it till it works for you! Sending you a hug! Katherine

Thanks Katherine, I do wonder if it is the MAC/MAI but am told that my MAI is to minimal to cause shortness of breath by one doc and told it could cause it by another so dont know.Thanks for the advice. Did you take your inhalers during your MAI treatment?

Yes, heathert, I definitely did use the inhaler Qvar all through my treatment .. the Atrovent was added later on in the treatment. I find they help a lot in coughing up sputum .. even better than the physical things I’ve tried. That has worked for me at least. Everyone is different of course. I kind of consider they as part of my lung health routine. Just keep trying things till you find what works for you! Katherine

Hi Katherine, was your MAC just nodular or did you have a cavity? Did the big 3 get rid of the MAI quickly or did it take time? Thanks for all your help.

Hello heathert, I don’t remember that I had cavities .. had nodulars. For me I did not start treatment with just the one mycobacterium .. delayed treatment until I got a 2nd serious one called : MYCOBACTERIUM ABSCESSUS SUBSPECIES M. BOLETTI ISOLATES

.. because it was a pretty serious type .. I started on 5 antibiotics .. cut down to 4 but it took me thirty months to get twelve negative cultures. That Abscessus was a pretty stinky one! But don’t forget .. each of our bodies are different ..so timing will be different! Don’t be discouraged! Katherine

Hi Kate I read that you were on 3-4 antibiotics for 6 years before the 30 months on Amakacin and 5 antibiotics. I was wondering if the easier first diagnosed type of MAC strain, was it Intracellulare, was cured before the Amakacin treatment or if the amakacin got rid of both types of mac that you had? sorry its very confusing I know it took the amakacin to get rid of the abscessus but did the other strain of MAC that you had, get cured while on the first 3 antibiotics? I hope I have explained this ok.

No, heathert, that is incorrect thankfully! I ONLY was on the 4-5 antibiotics (including the inhaled Amikacin) for a total of thirty months .. and have now been stable since May 2014. By diligently doing all the antibiotics and the inhaled Amikacin .. I was home free! It took care of BOTH the strains of mycobacterium! You will be ok .. just stick with it .. tough I know .. but from my understanding the FIRST try at treatment is the MOST important. Frankly I don’t remember why .. but that it is important to be successful the first time .. that was one reason I kept at it for those thirty months .. I was DETERMINED to win!! Those darn little critters were NOT going to get the best of me! I hope you take that same way of thinking .. you will come winning also! You go girl! Hugs to you! Katherine

Hi katemn sorry it was in a post under your name but now I see that it was laura lynn and you were just replying to her post. Thanks for the advice, I will do my best to get rid of the blighters! Thanks for your support!

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