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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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Thanks katherine, I did an eye examination during the time that im taking ethambutol my doctor prescribed eye supplements. I already had blurry vision before taking ethambutol. I also requested for labtest to check if my liver is ok. So far the results were ok. Im taking 1 gloves of garlic with honey while waiting for my culture test. I read it online that garlic has an antibacterial compound called allicin and honey has antiba terial and anti inflammatory. I make sure drink enough water and green tea everyday. Im not sure if this will help. I also take multivitamins to strenghten my immune system. I will request for the lab test which you mentioned on my next appoinmeng. Thanks again.
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1 ReactionGreat practical advice. I am on AARP and Angie's list is the way to go. I am on a fixed income but this is a must.
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1 ReactionI have not reported in lately. My last dr. Visit was 1 mo after discontinuing the meds. I'm feeling well. I will see dr. in dec for 3 month check up. Praying I'm still clear. I, too, lost weight after diagnosis and implementation of the 3 antibiotics. I have gained back over 50% back as my appetite has improved. After a while I think my body adjusted to the meds. and I did not feel as tired. As I understand the eye issue, if the Ethambutol does affect vision, it will be a dramatic change. This info was from my Opthmologist during a routine visit. Good to hear from others and feel blessed that I have done as well as I have. My treatment began in June 2015, Negative sputum in August. Took meds. for 12 months after negative sputum. I had a large appearing infiltrate. Each x-ray showed resolution. Last one was completely clear. After reading others stories, I hope I don't have a false sense of security and it will not come back.
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1 ReactionThank you for this practical information - Gleason scoring. O.K. I really shouldn't work on my house as hard as I do - I was feeling strong and want to take advantage of every day I am like that. But this weekend I was much slower I promise you! Thanks for caring and the question to ask my doctor.
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1 ReactionHello Elaine, good to hear from you! It is good for new people to hear that your body DID adjust to the antibiotics .. it gives them hope! For me the Ethambutol vision change was caught EARLY luckily .. so it was not a "dramatic change" in my opinion. But I guess I didn't actually ask the Ophthalmologist that particular question .. for me it was checking my vision against my husband's as we were driving .. noting that he could accurately read road signs before I could. The color vision change knowledge came when the Ophthalmologist checked my color vision .. I don't think I actually was aware of it prior to that. That is why I would tell people to be very aware .. because for me it was not "dramatic" .. yet it took me a year to fully regain my distance and color vision.
Don't be concerned about a "false sense of security" of it coming back. I have been "stable" since May 2014 .. just had my most recent check up last week! NO ONE knows what the future holds .. all we have control of is to take good care of ourselves .. be happy and live our lives as fully as we can! SO glad you are doing well .. put a big smile on my face! Keep us posted! Sending you a hug! Katherine
Imee, you didn't say what your eye issue was but my husband has Macular Degeneration and his doctor told him to take over the counter:
PreserVision AREDS 2 Vitamin & Mineral Supplement $26 for 120 caps
https://smile.amazon.com/PreserVision-AREDS-Vitamin-Mineral-Supplement/dp/B00DJUK8HS/ref=cm_cr_arp_d_product_top?ie=UTF8&th=1
I understand it is also helpful for cataracts. I don't know anything about garlic or honey other than what I've read a bit .. don't think it can hurt. I know I drink green tea each day myself. Hope the above helps a bit. Keep us posted! Katherine
Hi @tdrell and @kwilbur - just a quick note - Gleason is a scoring system used in the diagnosis and treatment prostate cancer, something I suspect neither of you need for yourself 🙂
Tdrell, let us know if you find out the scale used for lung nodule monitoring. Nodules can be evaluated by size, border, calcification, density etc.
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1 ReactionCila, I put your question in my NJH notebook. I wont be back til after Jan 15th .....see Katemn's great answer! Tdrell
Colleenyoung,kwilbur....re Gleason ERROR....the scale is called the Fleischner Society....reccomendations for use with lung nodules.
7 years ago when I had a chest CAT scan that showed nodules...there was a paragraph at the bottom that Listed the Fleischner Society guidelines dependent on size of nodules as to what type...if any...follow up was needed.....i believe this tool is mostly used to externally help to see if there might be a cancer and if follow up needed.....such as biopsy or repeat CAT scan in future.Tdrell
Terri and Cila, please read my reply to Cila above. I quoted directly from the NTM website. It should be accurate. Katherine
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