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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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@lindam272 I just got my annual sputem test done last week. So, in 6-8 weeks; I will find out if any cooties have taken up residence or not.
@unicorn Hi Krista. That is great news. I am a bit ticked off that NIH has known for years that N.O. therapy has worked for us and never pushed forward with it and brought it to mainstream. BTW, how are you doing?
@yayaaz, Hi Renee. Just want to welcome you to Connect. I am happy that you found us because mac/mai is a challenging disease to deal with. I commend you for advocating on your aunt's behalf. I feel badly for her that she is battling this at her age. I am no medical expert, but I feel like her doctor is right. Due to her age and myeloma; the 'Big 3' might be too much for her system. I refused them at age 48 (12 yrs ago) for fear of their toxicity. I have been treated with cipro, doxycycline, and tobramycin on alternating months. These have been well tolerated by me and seem to work. Not knowing the severity of your aunt's mai, I don't know if these meds would work for her, but it is worth mentioning them to her doctor. It is a Mayo dr that put me on those. You may want to mention that too to her dr. as Mayo physicians are held in high esteem by most medical professionals. I hope you will keep us posted on what treatment plan they come up with for her; and how she is doing. Do you have any more questions that you'd like to ask? -Terri Martin
@yayaaz, I am on Medicare and it has covered every single drug that I have been put on. (One them cost $2,500.00 a month) at the time. That was the tobramycin; cost has come down by half due to new contracts. I know that drugs tend to get approved without a problem when you are treated through places like Mayo, NJH, Cleveland Clinic, etc. They have swagger I guess. If she doesn't have secondary insurance, and she qualifies financially, the Healthwell Foundation can help with her co-pays on some (not all) meds. They are a Cystic Fibrosis charity, and since bronchiectasis is an 'orphan' disease and effects us similarly as CF, they help us out.
Good morning Terri,
Thank you for all your information.
I didn’t realize I’d opened up Pandora’s Box! One link lead to another, and then another, etc..
I do have questions, but right now I’m trying to understand all the terminology being used.
The doctor said for right now he will prescribe DOXYCYCLINE and FAMOTIDINE (?). Just the Doxy alone may cause colitis, which she really can’t afford as she only weighs 90 pounds. I will continue to devour all the great information I’m getting here.
Thank you for your concern, renee
Thank you, @auntnanny. I am waiting to hear what the doc finds out from my insurance as to what is covered. I'll probably be on tobrymicin and perhaps an oral antibiotic. Glad to hear you had good results. Prayers for good results this time too! Linda
@windwalker Hi, Terri, Yes, first time on it. I think my initial reaction was that I felt that my body betrayed me. After doing everything I can possibly do, I still have stuff growing that doesn't belong there. So frustrating! Hopefully, I don't have any bad side effects from the meds and can knock it out quickly. Thanks so much for the encouraging words! Linda
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1 Reaction@windwalker Praying for squeaky clean results! No cooties!! Linda
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1 Reaction@jkiemen yes when I used it my ctscan was worst than the previous years so I tried collaidal silver starting about three months before the next Ctscan ( recommendation was 3 months to have another scan) to my surprise the next scan revealed no more infection.
The nodules was less in sizes etc. I would try it again if I have too but I am asymptomatic right now and do not feel I have a lung problem. i had my yearly scan at the beginning of this month and an appointment in July with my Pulmonary Dr. Hope it will
continue to be great! Nick
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1 ReactionCollaido silver has some nasty long term effects so I would educate yourself before using. Just like conventional medicine there can be long term damage.
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