Any Success Stories for Mycobacterium Intracellular?
73 year-old male here. Just got my initial lab result of Mycobacterium Intracellular disease. It will take time to grow and identify the specific strain. I am not aware of any comorbidities. 150 lbs. 6'1". Have almost no symptoms, just an occasional cough with a bit of white or clear sputum, occasionally a tiny spec of very pale yellow. Any success stories out there for this? Thanks so much!
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Depends on your definition of success! It sounds like you are doing well currently. However, how we are doing also includes our CT Scan results, PFT results, sputum cultures, etc. Of course all these considerations need to be discussed with your physician.
I do know that there are some basics that are vital to taking care of to those of us with this disease.
1. Make sure you have a physician that is knowledgable in caring for someone with Bronchiectasis/MAC Lung Dz
2. Airway clearance, airway clearance, airway clearance!
3. Exercise, be active!
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2 ReactionsHere's a previous thread you might find helpful.
https://connect.mayoclinic.org/discussion/has-anyone-ever-recovered-from-mycobacterium-avium-intracelluar-comple/
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3 ReactionsIt requires years of hard work, persistence and determination to control this disease. Airway clearance, nutrition, clean air quality, clean food & water, proper supplements, etc. As long as you try your best to protect yourself, the disease can be controlled and improved.
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4 ReactionsChronic disease is hard to cure like high blood pressure or diabetes. However, we can control it and improve it. My mother had kidney disease when she was in her 40s, but in her 60s, she did not have it any more. It tells me that our body have a good chance to beat disease itself!
@helen1000 ,
Thank you so much for your comments. They mean more than you know. 🥰 This is all new to me. Despite being 73, never had problems with my lungs. I suspect the pseudomonas and MI came about a year ago when I was battling prostate cancer. I have been off radiation and androgen deprivation therapy for eight months now so maybe my immune system is rebounding. 🤞I am just finishing two weeks of Ciprofloxacin for the pseudomonas. I will be using the probiotic VSL#3 during the cocktail treatment. Maybe it will help with good bacteria. Thanks again, and Good Luck to you!
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1 Reaction@mark1952 there is some controversy around VSL#3 (just google) make sure you discuss with your doctor and are fully informed.
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4 Reactions@bayarea58 I tried VSL #3 a few months ago, and I did not feel well during that month, not sure whether it was related to VSL #3 but I stopped it. Very good reminder Bayarea58! How do you do?
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2 Reactions@bayarea58
Thanks, Bayarea58! I see the original formula of VSL #3 is available from ExeGi Pharma under the name Visbiome GI Care. Think I will order that. I meet with my gastroenterologist tomorrow so will discuss that. 👍🏻
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1 Reaction@mark1952 I turned 83 today and was diagnosed in August 2022. I found out in Oct. 2023 that I had a low load of MAI. I probably had the infection and BE at least four years before the CScan that showed BE. I say that because I was bringing up what I now know as a mucus plug every once in a while.
Just this week my last sputum test result after six weeks came back as " The August sputum did not grow any mycobacterium or respiratory pathogen ." It must be a really low load of infection...so low not showing????? That was really good news, however, I am going to immediately send in another sputum vile of mucus to see if it comes back with the same results.
If it truly is that low I can only attribute it to all @ helen1000 said above. I do it all plus making sure I get enough recovery time, meaning sleep, and light exercise.
Barbara
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4 Reactions@blm1007blm1007
Barbara, thanks so much for sharing your great news! And Happy 83rd Birthday! 🎂 I hope your low or absent mycobacterium means you are breathing well and feeling good! Best Wishes!