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@windwalker

@hydrang3a If it is at all possible, I'd get a second opinion from the Mayo Clinic about the abscess. NJH always wants to do surgery, and surgery doesn't guarantee it won't come back, because sometimes it does. Be sure to ask what would happen if it weren't removed.

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Replies to "@hydrang3a If it is at all possible, I'd get a second opinion from the Mayo Clinic..."

Windwalker….thank you for your thoughtful replies. I am seiously considering your suggestion to get a second opinion regarding my abscess. However I have great confidence in my NJH doctor and with her knowledge and experience with this disease.

I was very sick this summer…bed ridden with infection….received daily IV of Invanze and the infection improved….. later received 8 weeks of amikacin IV…experienced vertigo and other troubling side effects….switched to oral big 3 in July once MAC was identified….strength returned and much improved….CT scan shows less overall infection but the abscess has grown slightly …..as I understand it….abscesses are the most resistant to antibiotics….and I am hitting them with a lot of big guns including Arikayce daily.

I’m not in favor of repeating CT scans too early as I have already received a ton of radiation but I am very curious to know if the abcesss has shrunk since my last scan in September. Ive been advised to wait until March for the next.

I fluxuate feeling OK to having a rawness in my chest…I find it difficult to speak at times….from deep in my diaphragm…. exhausting and frustrating…small talk a giant waste of effort….difficult to extend a verbal hand of friendship ….and wary of a physical hand of friendship too as I have to be concerned about germs….my hand sanitizer is a lonely companion!

I am extremely emotional…anyone else?

I do have Bronchiectasis……and am subject to reinfection but I have not heard that I will need to be on antibiotics of some sort forever. I understand the concept but I think we all should be concerned about the hidden side effects of all antibiotics. Current medical thinking is that antibiotics weaken us, destroy our immune system and set us up for repeated infections which are smarter and able to defy the varying forms of antibiotics.

Functional medicine is replacing the overpresciption of antibiotics. The medical profession first thought they’d prescribe more than one antibiotic so the infection wouldnt get resistant to one …..now they are learning infections can be super intelligent and build up resistance to 3 or 4 at a time or in sequence.

Doctors are now focusing on treating the patient instead of the disease once the infection is at bay.

The aids epidemic was wiped out by antibiotics similar to what we are on. However as my infectious disease doctor told me the reason you don’t hear about HIV deaths so much anymore is not due to continued use of antibiotics but because of stick diet and improved lifestyle.

Antibiotics have their place but need to be used only sparingly and for brief periods…..to be healthy and to keep infection away I have been told that we must be vigilant avoiding sick people, preservatives, and practice meditation, deep sleep, proper exercise, excellent nutrition, and avoid stress.

I’m not there yet…and since I still am infected will continue my strong course of antibiotics and lung clearance….and I will do anything to get rid of this including surgery if antibiotics don’t deminisn the growth of my absecess.

I so enjoyed your comments….sounds like you have a lot of experience with this disease. Please keep responding …..all of this information and different viewpoints helps so muoh.

Thank you!

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