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What is the average life expectancy of untreated mac?
MAC & Bronchiectasis | Last Active: Apr 22, 2023 | Replies (52)Comment receiving replies
Thank you so very much for all of the invaluable information! You really sound encouraging and you have certainly been thru the wringer with this and come out with so much hard knowledge.
This new study didn’t exist a couple of months ago when I was finally diagnosed. It’s a new international study of 125 people in the US, UK, Japan and other countries. This is at U of Florida. I live a couple of hours away but it is where all my doctors have been thru this entire process anyway. They are only admitting 3 people at UF from what I understand.
They are combining the 3 drugs into one dose with a 25 month commitment. I’m
hoping I will find out if I qualify within a month. Maybe this 3-drug combo is the result of the study you participated in with Clofazimine alone not having a positive outcome?
Like you said, I believe I will be monitored very well, and I would go to UF once a month for the duration, but after feeling so badly, I am looking forward to trying any treatment that may help. I was never told I also have bronchiectasis until my pulmonary visit 2 weeks ago. I’ve been thru every scan, blood test, bronchoscopies, numerous lymph node removals, etc., as they initially diagnosed me with lymphoma. Many of my lymph nodes have been very enlarged for over 2 years but I guess that isn’t typical of MAC. I also have unexplained lesions on my spleen and liver and granulomas in my
lungs. From what I read, there are so many variations on how these bacteria affect different people, so I assume there isn’t a standard set of rules on how it will damage each individual’s body.
I appreciate you taking so much time to reply in depth and all of your encouraging words. I will go back and read what you have written often. It will help to keep some of the many aspects of this disease less confused in my head. I also really appreciate knowing how you have dealt with taking the meds, taking supplements, and how to deal with side effects. It’s a bit overwhelming. Like you, I eat well, stay very active, I am also vegan and I try to stay on top of my health, so I will take your suggestions to heart and put them into practice at the beginning.
That is such a horrifying story about the colonoscopy possibly being the cause of your bronchiectasis!
I hope you get to the “conversion”point very soon and start feeling great! This is such a wonderful venue for information and I am so happy to be here with kind people like you who
ate willing to share solid information.
Thank you again, formergardener! Wishing the best of health to you!
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Susanlo, I am glad that sharing my experience was in some way helpful to you, and I hope that you soon learn about acceptance into the trial. Yes, this site has provided so much valuable information. I fully respect and understand the decision of some of us to forego the drug treatments. For now, I need to give them a shot. I may reach a point when I decide that the risks are not outweighing the benefits, but I have not yet had that experience.
The small trial with Clofazimine only has not completed, and results have not been published yet, but I know that my doctor in Tyler said that she uses Clofazimine a lot. I don’t know in what combination she does, but I am assuming that she normally begins with the traditional meds. Once they get the study results and share them with me, I will inform you and this site. I remember her telling me, when I was so overwhelmed with it all, not to despair. She told me that I may die with MAC, but I would not die from it. She said that, if it came to it, they would find something that worked for me.
She is always very encouraging and upbeat. As a contrast, my local internist practices as a general internist but has a background in infectious disease. When I explained to him that I now avoid showers and bathe instead and lean over the side of the tub to wash my hair under the flowing water, he shook his head. I also told him that I have started boiling my drinking water until I can order water delivery.
He told me that the bronchiectasis caused the MAC, not the other way around, and that if I had not caught MAC, something else would have lodged in my lungs because of the bronchiectasis. I believe that I can perhaps minimize my exposure and so perhaps increase my chance of recovery. I have read that there are patients who have many years of recovery.
When I told the internist about my new medication, he asked if I would be taking it for the rest of my life. I was shocked, wondering if there was something that I did not know. I left there feeling very discouraged and realized just how important a positive attitude was going to be.
I figure that scrupulous attention to airway clearance and avoidance of unnecessary exposures to crowds, as well as wearing a mask when I feel that it is wise, will help me to avoid exacerbations. Simply taking meds cannot be the only way to control this.
If you think about it, this bug grows for yrs without us being aware of its presence, all without our doing any lung hygiene/airway clearance. My doctor is a firm believer in airway clearance and says that it helps her patients to keep their bacterial counts down. It is possible that relapses could be in part due to people letting their guards down and not continuing with airway clearance and lung hygiene. There may be many contributing factors.
I do believe that a strong and diverse probiotic taken far apart from the medication is critical to not only maintaining your gut, but also your immune system. That is also one reason why I take a strong 700 mg beta glucan capsule daily to fortify my immune system, as well as a scoop of bovine colostrum powder to keep my gut and immune system healthy. I also use a 600 mg capsule of NAC. It helps to thin the mucus, protects the liver, and is a powerful and inexpensive antioxidant, and so I believe that it is superior to Mucinex.
We can’t rely only on the meds without also doing everything else that we can to keep our bodies healthy. You are on the right track with your approach. I did want to ask you about your particular strain. Did you ever have any type of cardiac surgery or valve replacement? I believe that I read that it can trigger your particular infection.
My doctor did also say to set the temp of the hot water heater to at least 130 degrees and flush all faucet hot water for 15 minutes once monthly. This helps to clear the bug from the pipes. MAC clings to the insides of pipes through biofilms. It is aerosolized in fine mist showers. It is amazing how it can be transported to patients undergoing hospital procedures, where it can be in the water or on the equipment. It is everywhere, and the bronchiectasis is one condition that predisposes lungs to not being able to clear it. Again, minimizing exposure is something that we can do better our outcomes.