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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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nope im HIV negative several times several different test.In fact continue to retest just bc of incidence of false negative but it a no go on that.AND i should not have HIV anyways.
I think exposure to many in my husband's Reserve Center played havoc with me and others who has Belly's Palsy.
Hello Linda - this is Pam. I have not been on the site for awhile now but a new issue has come up for me and I wonder if you or anyone in the group has been diagnosed with the mold ASPERGILLUS? It was found in a routine sputum culture. I am not coughing and feel well, but my sense is that it could just begin to grow and become a problem. Has anyone dealt with this and done the treatments? Any first hand experience from anyone in the group would be greatly appreciated. Thanks, Pam
@pamelasc1
I have been tested a few times with aspegillus unfortunately. My last test showed it from a couple of weeks ago and I don't know if he is going to treat it this time or not.
For me he doesn't always treat it if your feeling well. When he does treat me its with the antifungal V Fend which is Voriconizole. Antifungal are different than antibiotics in fact antibiotics promote fungus especially Candida. Aspegillus is every where in the air so it could of just contaminated your sputum sample.
Shari
@pamelasc1. hi you may want to consider taking professionnal antibiotic from Dr Ohirrah. I swear by it! You can order from the internet. Good luck! Nic
Thanks for this info Shari - when you did take the V Fend, did you have a lot of side effects from the med? My doctor mentioned this drug but said it was a "big deal" and I had to be on it for 3 months. Can the aspergilllus just go away in time? Pam
@pamelasc1
My Doctor always had me increase my dosage of V Fend slowing one pill a day then two a day up to four a day two in the morning two in the eve.
I didn't have much side effects fortunately though. Right in the beginning of the first treatment is when I had the most side effects but I believe as fungus dies off you can have a herxheimers reaction (which is a reaction where you feel bad but it's a good sign because it's killing off fungus) I guess the plus side is it will also clear out fungus from your whole body. If you have been on antibiotics a long time like most of us we have a big imbalance especially in our gut with Candida.
There is a difference of having some aspergillus in your sputum and with having it growing into fungal ball in your lungs.
I do believe your body can heal anything by itself too. If you do the saline washes that can help cleanse the lungs. It's very important to cut out as much of sugar as possible because it is fuel for fungus.
Also I think as long as your feeling well it would be good to recheck sputum to see if it continues to show up. Like I said I have it show up and they don't do anything about it most of the time.
Hope this helps with your concerns!
Shari
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1 ReactionThis was very helpful Shari - thanks so much, Pam
@irene5 Good point Irene!
@pamelasc1 Hi Pam! Try Googling treatment options for aspergillis. Ask your doctor if it needs to have a suseptibilty test lile mac does. Ask too if they know colony size.
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