Further to the induced sputum testing that I am undergoing at the military hospital (on a daily basis, because they won't accept my sputum that I readily produce on my own first thing in the morning when I awaken) I came across a pamphlet from the DoD titled "Speak Up!" .... and that is what I did. I composed a letter to the hospital administrator, my primary care manager and the patient advocate supervisor essentially demanding that they blow their noses and smell the roses 🙂

I feel as though I cracked a rib or a vertebrae yesterday with all of the forced coughing, back pounding, and thirty minutes of inhaling saline solution and they want me to do it again today. Of course none of these individuals have responded to me yet, but I also BCC'ed by Congressman's office on the e-mail. I invested in a back brace for my thoracic cavity in addition to the lumbar brace that KateM recommended sometime ago. If it had not been for these two apparatus, I would not be sitting up straight this morning. Too make matters worse, I am suppressing all coughs this morning so that I can just march in there, produce a sputum sample then leave - my lungs feel so heavy and burdened.

THANK YOU COLLEEN for your response! I believe I have my questions in order for my appointment with UNC tomorrow. They are starting with a breathing test before I see the doctor. From there I hope to review my CT and X-rays with them for their definitive opinion of my condition based on these along with my documented clinical signs (cough, fatigue, fever, night sweats, dyspnea) and the 15+ positive AFB sputum cultures/smears over the past year. These are the standards for diagnosing a MAC infection according to the American Thoracic Society / Infectious Disease Society of America -

I plan to ask:

Is there are any other Criteria for diagnosing MAC Infection vs. Colonization?

Is Colonization of MAC just ignored if Radiographic results slowly evolve with demonstration of growth?

What effect would the treatment of five to six months of Isoniazid (for the misdiagnosis of TB) have on Mycobacterium avium?

What effect would treatment of five months of Azithromycin and Rifampin have on MAC if treatment with the same drugs were to resume nearly 7 months to a year later?

Would a MAC infection cause an extremely elevated Ribonucleoprotein (RNP) result and positive ANA? (As professed by my military doctors)

Has the damage in my lungs progressed since the first imaging of 2011 compared to the imaging of 2015?

What genetic tests can be performed to understand my susceptibility to MAC since I am NOT HIV+?

Do I have a deficiency of IFN-gama and TFN-alpha production and/or the absence or defects of IFN-gama receptors?

Does UNC have access to a enzyme immunoassay (EIA) kit to detect serum IgA antibody to MAC-specific glycopeptidolipid core antigen? (useful for serodiagnosis of MAC pulmonary infection)

What effect would high titers for certain viruses (i.e. Coxsackie B -left untreated by the Army) have in conjunction with MAC? - I have had two heart catheter ablations and left with medication that does not work and only inflames my Raynaud's disease.

Do I have scoliosis, pectus excavatum, or straight back? - skeletal markers for pulmonary MAC infection.

Why would a BAL be performed of only one lung (and not both) during a bronchoscopy?

Is it imperative to determine what species of Mycobacterium avium I have, Mycobacterium avium or Mycobacterium intracellulare.for proper treatment? Furthermore, is properly identifying the subspecies then of importance for treatment? "The one most likely to cause disease in humans is M avium subspecies hominissuis" followed by M avium subspecies avium, then M avium subspecies paratuberculosis, and finally Mycobacaterium intracellulare (Kasperbauer, & Daley, 2008)

These are some of the questions I have for my team of doctors (Rheumatology, Pulmonary disease and Infectious disease) at UNC, that I will address.

If anybody can think of others, please advise. THANK YOU 🙂

Best wishes,
Melissa

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