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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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@nick52 Hi Nick....As I learn about probiotics...I begin to see the value more and more and I begin to see your point of view on the importance of good bacteria. Thanks for your good thoughts. I couldn't wait for mine to come in the mail so I purchased some locally...I doubled up (60 billion CFU) last night and think it intensified my gerd so I backed off today's dose and made some ginger tea as someone suggested yesterday. (Hope it helps) What amount do you take regularly? Kate
I didn't say I nebulized c.silver for six months. Please reread my post. I have been using c silver with my saline for less than a month.
@alleycatkate Yes, Dr.Leventhal did say that. Some of the doctors have been telling members not to inhale anything. It is just saline, I'd have to ask that dr that said not to use it 'Why not?' Maybe there is a good reason. Keep in mind that so many drs are not really sure how to treat our dual disease, and rely on the standard 'Big 3'. If that is all they know about treating, then they probably aren't familiar with using nebulized saline.
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1 Reaction@yayaaz Hi Renee. NTM stands for non-tubucolosis mycobacterium. It is the synonym for mac. Many of us with mac also have bronchiectasis, a structural lung disease. I research these diseases by first searching with Google. I look up many terms there. I then choose reliable sources like Mayo Clinic, http://www.NTMinfo.org, journals by physicians and case studies on these topics can be found on http://www.nih.org. and other sources. Dr. Joseph Falkinham is a mac researcher and has published journals containing his studies. I learned a lot from attending a National NTM Conference in D.C. 2 yrs ago. They had mac specialists from highly esteemed medical institutes from across the country. I have watched numerous videos from the doctors and patients at National Jewish Health. I am hoping to make it to the World NTM conference in July, where mac specialists from around the globe will be there. Myself, and others on this site also draw from personal experience. I learn all that I can about our disease so that I can mentor this group with accurate information. If you need help finding information, I am happy to help. Also, if you read through our past posts, you can learn a lot. Have you been to our Discussion board and seen the topics we discuss?
@auntnanny I am no medical expert, but it sounds like the mac is knocked down to a minimal amount. If you were on the Big 3 to get you to this point, your doctor may want to have you on it longer to try to eradicate it. Or, you might ask to be put on a 'maintenance' regimen of antibiotics to keep it at bay.
@linda272, Hi Linda. So glad it is helping with the phlegm in your throat. Licorice root (black licorice root specifically) is also great for clearimg the gunk out of the lungs too. It is one of the ingredients in 'Clear Lung' that @nick52 uses, and is also in my favorite 'Breathe Easy' tea by Traditional Medicines. It def helps with symptoms.
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1 Reaction@nick52 and @alleycatkate, I had looked into the cautions of taking licorice root as I learned that California has a mandate about posting a warning lable on the product 'Clear Lung'. Licorice Root can be harmful if you already have high blood pressure by raising the pressure even higher. Also was noted the amount needed to cause high blood pressure in one who didn't already have it. I would have to drink 20 cups of 'Breathe Easy' tea a day for 60 days in a row for it to be harmful to me. That is not something I would do. Just like the 'Clear Lung' product didn't harm you Nick. I got the info from the link that was attached to the warning lable when I looked for Clear Lung on Amazon. I also looked it up on the NIH website.
Thank you windwalker for pointing me a direction for help. Yes, I have been on the discussion board. I only knew a microscopic piece of dust until I found the Mayo discussion group. I’m starting a notebook so I can pass on the information I get on to my aunt (she is the one with MAC/MAI BRONCHIECTASIS). Thank you! And thank you to everyone who have shared their stories so people like me can help our loved ones!
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1 Reaction@windwalker ...thanks for verifying! Yes, I would take Dr Leventhal's instruction above all others. Just my insecurity in double checking. I have started nebulizing and am doing a 1/2 dose to work up to full dose. Thanks again!
@windwalker & @nick52 ...I had recently suggested Clear Lung to a neighbor that coughs continually and keeps getting sinus infections...after I did that I thought I should check with the company, Ridgecrest, to insure it is safe for all instances. They told me there were NO Contraindications associated with the product. They also told me...and I liked this a lot..that If you ordered 3 of them from them, the fourth one is free. I said that is terrific but I got mine for 35. from IHERB and theirs was $45. She said she would priced match and throw in the 4th bottle for free. Yay! Guess who ordered? 🙂
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