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Not yet diagnosed – very sure positive for NTM. Questions.

Home Forums NTM Support Forum Not yet diagnosed – very sure positive for NTM. Questions.

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    Sharon IvanauskasSharon Ivanauskas

    Hello all, new to this website. I live in Flemington NJ. I have an appointment with a pulmonologist this Tuesday morning (July 9th). However, I know the front desk staff said he is not familiar with NTM & does not test for it. I called around & all the Drs familiar with this are over an hour away & had wait lists for 2 months+.

    History (not sure if any of this particularly ties in or not) is… had weight loss sleeve surgery, out of the country in MX, in 2012, which seemed to go well. Unfortunately did not lose very much weight at all, still have a lot to lose & considered obese. Not extreme, but need to lose weight for sure. 2 years after that I began to get symptoms for acid reflux & IBS-D. That has just gotten worse over time, so see a gastro dr to treat that. Have a large sized hiatal hernia now too. Also have sleep apnea (but haven’t been able to use my cpap as my acid reflux is so bad at night, keep having to whip off my mask all the time to run to the bathroom with bile stuff).

    Then came to a head kind of, last weekend when I was on vacation in VA! I was tossing & turning, so hot & shivering, and aching all over in pain. Woke up & couldn’t breath well. So went to urgent care. Took xrays & they said they would call me. Called me & said I should go to ER has the tech who read them believed it was some kind of Tuberculosis. WTH?! So off to ER I go. They freak out, whisk me into isolation, dressing in hazmat stuff pretty much. Did bloodwork, urine tests. Looked at the same chest xrays. Took forever, but then they decided it was acute bronchitis & discharged me with antibiotic & inhaler.

    This really makes me even more sure that it is NTM.

    Oh & primary & local urgent care, about 3-4 months ago said chest/lung infection & gave me antibiotics & said to take mucinex. lol


    Just got back today from vacation, so plan to call the urgent care in VA tomorrow to get xrays faxed to pulmonologist, and a copy emailed to me too. But as pulmonologist doesn’t deal with NTM, even if I educate him & print off information, do you think he would consider it?

    Thank you so much.

    Karen PoveyKaren Povey

    Hi Sharon
    You will need further testing to determine if you have a NTM. One can’t tell from an xray. Symptoms, sputum sample, and CTscan are used to determine a NTM. Going to a pulmonary dr with your xray in hand is only the beginning.

    Good luck, Karen

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