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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Well stated boomerexpert! This forum is great, for those of us living with MAIC. I was diagnosed about 5years ago, and have still not done the antibiotics. I see my Respirologist every 3 months, at which time he looks at culture results, chest xray, blood work, listens to my chest, and talks about my symptoms. Many times I have been ready to go for the anitibiotics, but still so very afraid, and feel so relieved when he tells me my chest xray or CT hasn't changed, so we will hold off once again. I have never had a fever or night sweats, and do try to practice good lung hygiene with exercise and chest pysio, puffers etc.
I have a history of Carcinoid Cancer in my lungs(never smoked), but did have a lobectomy in 2002. I also have arthritis, and am on the surgical list for a total knee replacement this fall. I am very nervous of how my lungs will hold up, through the surgery and during the recovery period, but yet feel that I should get this done, so I can stay physically active and fight the MAIC. (before I need to do the anitibiotics). And yes, we need to advocate for more research, so that we are not trying to fight with 20 year old treatments.
Thank you to Kate for starting this forum!
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Hello Joanney, you are going about your journey is a very wise manner. Getting checked every 3 months to ensure that you are stable. MAI/MAC treatment is like a big puzzle that our doctor must keep putting together to see just how we are doing .. and as long as those puzzle pieces don’t change .. remain stable .. there is no need for treatment! So good for you that you practice your good lung hygiene etc .. that is just great! Just remember .. there are many of us who have gone through the antibiotic treatment .. come out the other side and are doing very well .. ME for instance!
Yes, the antibiotic treatment is not a new treatment. Unfortunately our disease is not common enough to engender copious dollars for research. We are NOT the "flavor" of the month .. or even well known like cancer or heart issues .. just not common or "popular" enough. This may be tacky .. but it tends to happen to "elderly" women .. not cute little kids .. tough sell on TV!!
THAT is EXACTLY why on my Amazon.com account where I spend a great deal annually .. I set up AmazonSmile in the name of: NTM Info & Research. I am trying to do just my small bit toward a bigger picture .. might others of you join me?
What is AmazonSmile?
AmazonSmile is a simple and automatic way for you to support your favorite charitable organization every time you shop, at no cost to you. When you shop at smile.amazon.com, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added bonus that Amazon will donate a portion of the purchase price to your favorite charitable organization. You can choose from nearly one million organizations to support. http://smile.amazon.com/gp/aw/ch/about
What is NTM Info & Research?
Research NTM Info & Research has helped accelerate medical research by funding or co-funding numerous studies related to NTM patient vulnerabilities, NTM infection sources and treatments, and prevalence of the disease in the United States. Click here to read an article by Steven Holland, M.D. from the National Institutes of Health, on the importance of clinical trials and research. In addition, NTMir assists on an ongoing basis with patient recruitment for clinical trials and studies. To make this process easier and faster, NTMir funded the creation of the NTM Patient Registry (as part of the COPD Foundation’s existing Bronchiectasis Registry).
http://www.ntminfo.org/patients/research
Joanney, hope you find this helpful .. sending you a hug! Katherine