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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
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@tdrell Thank you Terri.
@america Hi Rita. I am sorry that you are not tolerating the toby. You can ask your dr about switching to a different inhalable. There is Amerikayce (sp), Colisten, and possible a few others. I have seen @heathert post in the past about throat lozenges that helped her. Because of your Sjogrens, your dr should be able to guide you on this. I have used Levaquin in the past. It is a strong antibiotic. Is your dr suggesting you go on that instead?
Thanks Terri! I will try to find the lozenges and try Tobramycin again! I really like using it... I hope it will work. And yes the doctor called in some Levaquin just in case I get a flare up! But I see him in March so I’m hoping I won’t need to. Thanks Rita
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1 Reaction@america. My wife has a cough and doesn't seem to be getting any better. She is Immune-suppressed (Liver Transplant) so her body doesn't agree with the Big 3. She has lost some weight on the last 3 month. I am thinking if the lozenges might help her a bit.
@spencersok, if she can take the big 3 find natural medicine to help her cough. For example Clear Lung with Ridgecrest is good to clear lung congestion, probiotics are also helpful for infections, etc. Consult a naturopath they can help her probably more than the big 3 in her case. She needs to stay away from mucus forming food like dairy, fried food, sugar etc. Check the internet they will tell you which food forms mucus. Many people can’t take medication. There body reject it because it is not for them. I have bronchiectasis and had the MAC and never taken medication but I do use natural medicine. She has nothing to loose trying. Even a nature food store could probably hernher a bit. Medical doctor can’t help when your body react to medication (pharmacy). I will keep her in my prayers and as the highest to guide you to a solution. Have a lovely week!
I’m trying to get the name of the lozenges! I’ll get back to you when I find them.
Hi heathery! Can you please give me the name of the lozenges you use? I can’t remember which one it was. Thanks @america Rita.
Hi Rita They are called Strepfen, they are Strepsils with neurofen in them. They were wonderful, sometimes I would break them in half and just have half. Heather
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2 Reactions@nick52 Thank you very much for this information.
@heathert Hi, thanks so much for the info on the lozenges!!! I ordered them from Amazon and with them coming from the UK, the projected date of arrival was the middle of February. I was surprised yesterday when they arrived and the timing was perfect as I have been battling a slight sore throat. Used one today and they are amazing!! Thanks for sharing!!! Blessings, Yaggi01
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