(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Thank you Liliane, I really like to live by what I call my "gratitudes" .. reminding myself of all the things I have to be grateful for! Maybe it is just because someone smiled at me that day .. or because the sun shone today .. or just whatever! I absolutely believe in that old saying that "happiness is an inside job" .. and that each morning when we wake up we can make a new decision to be happy that day! It may sound hokey but I believe it.

You are so right .. we are SO blessed that there is a TREATMENT to stabilize our MAI/MAC .. we can get help!! Just today my husband saw his Cardiologist for his heart issue .. Afib. He is taking a newer medication called Eliquis which has almost zero side affect for him. Whereas his mother ended up in a nursing home for 17 years with a severe stroke. So sad .. had this or even an older medication been available back then so much sorrow would have averted for his family. Frankly, those of us with MAI/MAC would have SEVERE lung issues without the antibiotic treatment available to us today with the tools our doctors have now. Thank you Modern Medicine!

http://www.maclungdisease.org/frequently-asked-questions
I have found this University of Texas article very informative. Hope you all like it!

Liliane, this is just FANTASTIC! What a GREAT article! One area I am REALLY going to email Dr. Aksamit on is the one on MAI/MAC being curable. Hmmm .. did I misunderstand him or just what!! I thought I understood him to say you could "stabilize" it but not cure MAI/MAC. Because of the importance of accuracy on this Forum I am going to forward the article to him and clarify my understanding.

Thank you SO much for this article .. I think it would be just great for each new person to read it .. it answers so concisely SO many questions and concerns. Truthfully it might be overwhelming for some people in the beginning to read it .. but in time it would be invaluable .. again .. thank you so much for the information! Hugs to you! Katherine

Lilane notes that we are fortunate to have antibiotics to treat this relentless (and more widespread than I knew) infection. I believe the reality to be quite the opposite, and urge all diagnosed with this infection to push their physicians to advocate for change.
The facts are: the treatment for MAC/MAI is at least 20 years old...we would not abide by a physician prescribing a 20 yo treatment for cancer, for example; the treatment is proven over and again to be minimally effective, with numerous, intolerable side-effects (for some, similar to those associated with chemo); few doctors who treat this have a full understanding of just how awful the regimen is (as each may see just a few patients with the infection), (therefore) nor have they advocated for rigorous research into new, far more effective research, even with thousands more being diagnosed daily with this infection worldwide.
I urge all of you to insist your doctors visit this forum for a more complete understanding of the awful impact of these medications on patients (and you), push for more research into better treatments (particularly given the increasing amount of antibiotic resistance inherent in our society, from over prescribing and use in farm animals), and seek out doctors willing to try alternative treatment in lieu of the standard. I have done all three, and will continue to do so not just for me, but for all coming after me with this diagnosis...they deserve better...so do we.

It is a good website. The cure thing is confusing. If you look at the article - under the question "Is there a cure for MAC?" they say the cure rate is 90%. But, further down under the question "Will the disease cause an early death?" they say, and I write this verbatim "Although MAC may be "cured"..... Because they put the word cure in quotes that to me is saying it technically isn't cured, but is probably like you've said Kate, stable. But, it will be good to hear what Dr. Aksamit says. Janet

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!

Thanks Catherine, I read the article and I have bronchiectasis from ace reflux I think. I started the med last week and I don't know what to do about sleeping. I only sleep about 3 hrs and most of the I'm awake. It seems like my body forgot how to sleep. I think that is another problem I'm dealing now. I use to take any kind of sleeping pills but now I'm on MAC med I'm afraid to take them. I'm just scared about this disease. Reading all your post help me calm myself down. Thank you so much for all you post.

Hi Janet, Dr. Aksamit replied .. but I am waiting for his authorization to quote him .. don't want to do it without his ok .. he is just a great guy! (Love your Photo! .. It is nice to place a face to our names!)

Hello Cila, I am ABSOLUTELY not advocating this for ANYONE .. this is just me! I also have sleep issues .. don't know if it is age .. using the antibiotics .. who know what it is. I do NOT want to get started on prescription sleep meds so what I have done is over the counter .. because I am small .. 5'2 .. 116" .. I bite in half the tablet type "Unisom". You can get the blue tablet in generic much cheaper. It is not a panacea .. but I have found it has helped me. Just my biology .. don't know if it will help anyone else.

I know you are in a tough period of time .. so just try to find ways to "fill your cup" .. for each of us it is different. A walk in a park .. reading a good book .. talking to a supportive friend .. working in the garden .. meditation .. a nice bubble bath. Whatever fills your cup .. remember .. you can't pour from an empty cup. You have nothing to give yourself or anyone else if you are trying to run on "empty". Figure out what works for you .. AND DO IT!! YOU ARE IMPORTANT! You are worthy of taking the time to fill that empty spot within you right now that is filled with fear. Fill it with joy and peace .. figure out what works for YOU .. and then DO IT!! Remember "Happiness is an Inside Job" .. nobody can do it for you .. each person must find it for themselves. But I am sending you Lots of Positive Energy to get you started on that Journey! Sending Hugs! Katherine

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