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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Hi Rick: I started on it daily for quite a while. Once my cavity shrunk 50% it was changed to 3 times per week. The daily is difficult especially at first.
Here is an article about how to recover your guts when taking antibiotics. They highly recommend to take probiotics with antibiotics together or two hours before taking antibiotics. I also doubt probiotics food can bring enough probiotics to human body. I always feel supplement is higher dose.
https://drruscio.com/taking-probiotics-with-antibiotics/
Hi Helen, You mentioned "I also doubt probiotics food can bring enough probiotics to human body. I always feel supplement is higher dose."
Ahh, the power of advertising and the media! We have been taught to believe that. Humans existed for millenia without supplements, and even now some of the longest-living people on the planet are in primitive societies that eat a natural diet - I doubt any of them has ever heard of a supplement.
"Higher" is not always better - many supplements, if taken in too high a dose simply come out in urine or feces. or are not well absorbed by the body and are similarly excreted. Or the active ingredient(s) are killed by the gastric juices in the stomach.
Remember, the promoter and manufacturer are not required to demonstrate how your body uses these - only what is in them when you swallow them, and even then, independent proof is not required.
Unfortunately, other supplements like B vitamins can deposit in our organs or body fat and cause serious health issues.
Finally, supplements can interfere with medications we are using - and just because they are "natural" does not mean they are more beneficial that the drugs.
Dear Sue, I totally agree with you. Thanks so much for your scientific advice and knowledge! Actually I did take some probiotics last week and felt bloating and gas, discomfortable at all. This also makes me believe home made food is much much better. Coconut yogurt and pickles make my stomach so warm, not probiotics!!
I really like your comprehensive analysis - as you said, a very analytical person. Were you a doctor or nurse practitioner? : -)
Guys, here is another article about how peptide helps with antibiotics against MAC 🙂
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10459066/
it also helps Pseudomonas aeruginosa infection 🙂
hello all and specifically re the article about cyclic R4W4 antibiotics....after reviewing the study, it seems its still in research phase....chickens and mice were where they got the findings but it sounds promising. I started tx with antibiotics...first week azythro and rifampin ....more fatigue then usual and minor GI changes. Added the Ethan last week. Feel like when the MAC was active, nausea, chills at nite, interrupted sleep and urine is orange>>>>yikes. Much more challenging, but i believe that is the body's immune response so I am taking this as an indication my body is mounting the defense against the MAC with the help of the antibiotics. As the week passed the chills subsided but still feel pretty washed out and unmotivated. I am on the daily meds. Can anyone comment re do the side effects lessen as you adapt to the treatment or is it the other way around? Will my fatigue and side effects get worse due to the build up of meds in system. I am going to think of a really really nice present to give myself when I finish this year!!!
FYI, the infectious disease Dr doesn't want to follow me. He said he will get me on the treatment but then the pulmonologist will be doing all the F/U treatment. That being said, we are pretty much left to our own devices unfortunately with the treatment. I share this as my observation , not criticism. I find out more on this forum then my Dr. re side effects. I am thinking they don't want to put negative suggestions in our head???? But then That leaves us to do our homework. I am very grateful to have found this forum.
Hug hug pfurcht123.
I will start antibiotics next week so I will be able to share more.
I am taking estrogen as I am close to menopause period, which is proved by my NTM lung doctor, which I find gives me a lot of energy and improves my concentration. I hope this can help with side effects like fatigue. I did CT again after taking it for two weeks and my cavity shrinked a little bit. I am also taking probiotics supplement seed ds101 daily dose as it does not give me any stomach discomfort and also it is proved to be able to get into colon. Some articles say that it is case by case, some strains of bacteria in probiotics are helpful to some people, while some cause side effects to others. I will also eat home made pickle, home made almond milk yogurt, kimchi, salmon, seaweed, nuts, broccoli and banana as snack and various fruits & vegetables.
I hope we can go through this challenge smooth!
My lung doctor has a nurse practitioner and she replied my question in a timely manner all the time. Maybe you should find a doctor who can follow up with your symptoms more frequently. Also ginger tea may help with nausea.
To sum, any disease comes from genetic or digestive issues, or unhealthy life style. You have to find deep rooted reason, change the life style, exercise, reduce stress, eat the right food and take the right medicine. It is not just antibiotics!!!