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Should I take Big 3 + inhaled ARIKAYCE
I am currently 48 year old, I have NTM- MAC with a couple of cavities (1.3 cm * 2.2cm , and 0.5cm* 0.5cm), the big one increased in size from last year ( it was 1.9cm * 1.2cm) and this small one (0.5cm* 0.5cm) is new. Also I have nodules in both lungs widespread. I am using Saline 7% but I don't know whether it helps with cavity. Also my sputum test turned from negative to positive this year. My doctor is concerned that the cavity will keep increasing in size and quantity so he wants me to start antibiotics as soon as possible. He is a great doctor.
I am deeply concerned about the side effects of big 3 + inhaled Arikayce, that my doctor is going to prescribe for me.
Do you think these antibiotics will help with MAC? I truly doubt about it. I did a lot of research, MCA is too hard to cure and it may come back. Not to mention the side effects... I also studies Sue's cases and she is doing really great with Saline 7% without extra antibiotics.
My doctor ( NY) also says they are going to study phage therapy next year. ( I shared my story about phage in Belgium in this forum ) But he says that any new type of antibiotics is not in the pipeline yet. So I am thinking maybe I should take antibiotics. He thinks maybe I can tolerate the medication because of my relatively young age. I don't have other diseases so far.
Do you have any suggestion for me? I am thinking of just closely monitoring with CT every three months. Really struggle with my decision.
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I was to have the upper left lobe removed in 2018 and 2 weeks before my right lung collapsed so we put it off. It was reconsidered later on but the mac had scattered a bit to the right. Thoracic surgeon said if it would heal me and if the risk was worth it he'd do it but advised against it.
I see, I thought It will be minimally invasive. I hope you can drink a lot of veggi soup + fruit juice to make you healthy. Bless bless
Yes, I did get 6 months of short term, but 2 weeks into long term I was terminated by Unum and to go back to my office job even without a Doctor's clearance. I did not return to work and my employer of 26 years "retired" me. My SSD has been pending for 9 months. I 'll soon be of retirement age and don't have the energy to fight it by hiring a lawyer.
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1 ReactionThose items were always in my diet. Apparently they don't work for many of us
Helen may be I missed your recent ost about Belgium visit but I wonder if you actually decided to do it. The last post was regarding your online visit and whether to send the sputum samples or visit in person. Please share what happened.
Hi 1fancydancer. Wow. Sure wish there was a way to see what treatment you were given in 2017. Since you were cleared of MAC, are they continuing to test sputum and CT scans or are they just "assuming" you'll need treatment anyway and have decided on Azithromycin forever? Is your doc a pulmonary specialist?
CT Scan once a year to check for stability or more scarring from many infections other than MAC. MAC just seems to be a very severe one. I have two doctors that work in tantum, a Pulmonologist and Infectious
Disease Dr. Pulmonologist has run out of drugs and options so he bows to Infectious Disease. A pulmonologist will put me to sleep about every two years or so and wash out my lungs of mucus. Infectious Disease is scarred of MAC more than the other bacteria apparently and put me on the Azithromycin 3x per week. Not had it since. But have many other bacteria that I pick up. Had 2 bouts of Pseudomonas, 2 bouts of Burkholderia which is a super duper rare bacteria, and Covid one time all in 2023. We only test sputum when I figure out something is not right. I have a standing order at the Dr. Office when I bring in samples to test for Pseudomonus with one sample and all other bacteria for the other, what ever grows out. They go from there.
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1 Reactionhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC5090204/
Another peptide could possibly against MAC and other bacteria - a synthetic peptide called clavanin-MO,
Natural remedy - Valencia orange oil was found to have activity against M. avium complex and M. abscessus [15].
This is for informational purposes only.
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1 ReactionClavanin-MO
Clavanin-MO is a naturally occurring antimicrobial peptide which possesses immunomodulatory properties (113). Both in vitro and in vivo, clavanin-MO stimulates production of inflammatory mediators, including IFN-γ, granulocyte-macrophage-stimulating factor, and monocyte chemoattractant protein-1, while suppressing the pro-inflammatory cytokines IL-12 and TNF-α (113). Clavanin-MO protects animal models from infection by both gram-positive and gram-negative bacteria (113). Although clavanin-MO has not been tested against mycobacteria, its immunomodulatory effects could potentially improve the immune response against MAC while blocking pathological inflammation, especially since it affects both IFN-γ and TNF-α, which are targets of other promising