If you still have some 3%, have you considered mixing it with 7% in the nebulizer as a transition ( you can mix gently and discard the excess.)
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Sorry that you have this new concern. M gordonae is common in tap water- I isolated some from a faucet in NYC when I had water tested, but it does not usually cause disease unless you have a compromised immune system. It could also be a contaminant in the culture although that seems less likely if found twice in succession, but anyhow, your ongoing MAC is a greater concern and if the gordonae is truly present should respond to the same treamtnets
I expect the ID doctor will be more focused on whether your MAC is showing any response to the daily meds and might want to tweak treatment. If you have not already had drug sensitivity testing on your MAC strain or found out the exact species, this might be a good time to do it to make informed treatment decisions
Gosh, I am sorry to hear you are having so many symptoms- if you have this spontaneously without cardiac surgery, that is quite unusual. Is it possible you could have avium lurking deeper in your lungs? You don't say whether you have had a bronchoscopy. Also, if you have had asthma are you on steroid inhalers on a regular basis, as that is a risk factor for mycobacterial infection and you might want to discuss with the pulmonologist as there might be other options. I will definitely let you know if I learn anything else, but for me, avium is the " main attraction". I'm also waiting to see if I have to do the big 3, but based only on CT findings as I'm totally symptom free otherwise, although am coughing up some gunk with airway clearance. If you have not tried that yet, you should also ask about doing that as sometimes people are able to clear enough out of their lungs to improve symptoms and delay treatment with meds. Let me know what happens and good luck!
Coincidentally, I got a test result today saying that a sample had M chimaera- I've previously grown MAC but have not yet been treated. It seems that most the information about this is related to outbreaks in patients after cardiac surgery from contaminated equipment. Otherwise, it does not seem to be very virulent and would be treated the same as MAC if treatment is needed for the overall lung condition.
You can get pins and needles from pressure on a nerve eg carpal tunnel. It's possible this could be peripheral neuropathy which can be a side effect of medication or occur for many other reasons- diabetes, alcohol, vitamin deficiency. Also, people who are anxious and hyperventilate can have pins and needles sensations. Hope you feel better soon
I had my water tested recently at Special Pathogens Laboratory in Pittsburgh. Several water samples were negative but one came back with a lot of Mycobacteria, some of which they thought were Gordonae( from the shape and color of the culture colony) which is not usually pathogenic, although noticed another post about a member being infected with this
The lab will only tell you whether the mycobacteria are present or not. I am waiting to hear my final results on sputum culture testing – if it is something unusual, I might get the next level of testing to ID the bugs- the lab has to send it elsewhere for an extra charge
In the meantime, I am assuming that the water supply is generally contaminated and looking into putting water filters on one shower and the kitchen faucet. Pall Homecare provides filters that last about two months but this is a pricey option
Hope this information is helpful
My name is Janet and I will be going. Hope to meet you, Mary, and that you stay well in the meantime