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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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@ ling - what is candidas - Candidiasis a Thrush and yeast infection. Candida Albicans is one of the many types of fungi that live and grow inside most human bodies. Normally, candida causes no harm, our bodies is equipped with probiotics (friendly) bacteria and immune cells that keep it under control.However, some medications , high-sugar diets, allergies, and other factors can all cause the friendly bacteria to die, leaving candida freeto grow unchecked in parts or all of the body. Dr Balch p.125 . Hope this explain it clear to you ling. Nick52
@boomexpert my doctor (infectiologist) said the same thing to me. Many people has it but are not diagnosed. He didn’t seem too worry about it but monitored it for 3 or 4 years. With the bronchiectasis it is more dangerous to multiply
@marier. You have candidas because you don’t have good soldiers (friendly bacteria) to fight the bad ones. Solutions is high doses of probiotics. You may get help from a professionnal like a good pharmacist who have knowledge in probiotics. Try to find one.
@nick52 Yup, I looked it up. I asked the question because the word was mis-spelled as candia and I couldn't find anything matching that word. Once it was corrected, I was able to find information on it.
Thank u
Thank u ill look for it on amazon and get it thank i again
@marier, so sorry you are struggling with this. You must have this in your mouth if you are using nystatin swish and swallow. Takeing probiotics is a wonderful thing to have to keep everything in check. But when you get desperate for relief and nothing is working, I get a prescription for fluconazole. I take one pill and that usually takes care of oral thrush and vaginal yeast infections within a few days. If you have itching down there go to the store and get monistat 3 or 1 that comes with an anti itch cream specifically for external vaginal itch. They have generic brands or store brands that may be cheaper so read the ingredients on the back of the pakages. You can also just buy some cream that will temporarily numb with lidocaine to stop itching and burning in your external vaginal area( this is not a cure but it will give you temporary relief). I'm careful about the pads I use because some of them can aggravate the situation so I get all organic cotton pads( you can be allergic to the stuff that other pads are made of and not even know it's a problem) Also get a new tooth brush So you don't keep reinfecting your mouth and a spray bottle of peroxide. I spray my tooth brush and my water pic with peroxide after i rinse them and before putting them away. It seems to have helped me keep the thrush away. I am glad you asked. and hope this is helpful. Take care of you!
Becky
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1 ReactionThat is very good advice!
Hi @pkayh Welcome and nice to hear your story. Please tell us all with MAC and bronch how you stopped the bronch from worsening as that is what we are all trying to do. Thanks you
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1 Reaction@chinamom - you can also gargue with apple cider vinegar and water for thrush. I had a white coating on the back of my tongue. Starting gargling with apple cider vinegar n water, thrush went away....