Maybe fortuitum? Anyhow, glad you a tolerating the meds well
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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
Tue, Apr 16 1:12pm · Has anyone had their home water supply tested for MAC/NTM ? in MAC & Bronchiectasis
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
Thu, Apr 11 4:43pm · Anyone going to 2019 NTM Physician/Patient Conference in Texas? in MAC & Bronchiectasis
My name is Janet and I will be going. Hope to meet you, Mary, and that you stay well in the meantime
Thanks for the welcome and site information- really a mine of useful material!. I am doing a lot of things to avoid exposure and stay healthy and feel grateful the infection was discovered early. So helpful to hear that a lot of people are using 7% saline in their nebulizers. I could not get that prescribed even for an induced sputum and ended up needing a bronchoscopy – everyone around here seems to only use 3%, which is what I am using at present in my nebulizer and the docs seem scared that it will irritate the lungs too much, although 3% has little effect on me most days and I am always able to exercise afterwards. I am gathering up all the info that I can and will then circle back to the chest PT and pulmonologist to review .
Thanks for this article. I see that a number of people are using 7% saline in their nebulizer but the doctors I have seen have only recommended 3%. Would be interested in comments on this. Also for brigby, there are devices that can help you clear your airways more easily, even if you have limited pulmonary function and also medications to help liquefy sputum and clear your lungs. I wonder whether you were able to discuss this with your doctor?