Hi Colleen. I am about to be undergo another round of sputum cultures in a 'unorthodox military setting' to see if I am still producing positive AFB compared to my last round of cultures which were performed in May 2015 (they were all positive). My most recent CT Scans (July 2015 without contrast) evidences 'tree in bud opacity/branching nodular densities in the superior segment right lower lobe' with no "new nodules" compared to the 2014 CT Scan which did NOT have tree-in-bud opacities, but did "redemonstrate biapical chronic lung changes" from 2011 CT Scan, "reticulonodular, interstitial, pleruparenchymal opacities in both lung apicies".

I am dealing with people down here who have no clue what MAC is and are too proud to admit that they have no idea how to identify or treat it. They only treated me with two antibiotics almost five months before taking me off of them. This was all after a TB misdiagnosis following a 21mm PPD in 2011, and treatment with Isoniazid for nearly 6 months, further building the resistance of the Mycobacterium avium to the proper treatment.

I have written my Congressman, Thomas Massie in Kentucky, for a review of my condition and to "Trust but Verify" the claims and treatment (the lack thereof) by the Army MEDCOM providers. To date, I have been able to secure a second opinion with an insurance authorization to have: ONE appointment with a Pulmonary Disease doctor and ONE appointment with an Infectious Disease doctor both at UNC in Chapel Hill.

Based on your experience, is there really anything that can be accomplished in ONE appointment for a MAC infection? What do I need to ask these doctors to do that the Army medical team is not doing?

The Army has provided me with Reports but NOT imaging of my most recent CT Scans, so that I can take them to the appointments. I will also take all blood work and sputum results with me to the appointments.

Thank you for any guidance you may be able to provide.

Very respectfully,
Melissa

Hi @melissa23,

You have a number of separate, yet related, issues going on here. Let me help connect you with appropriate Connect members in the right places within the community.

1. Medical care in the military setting - I suggest you start a new discussion in the Just Want to Talk group here: https://connect.mayoclinic.org/group/other/#/!tab=stream You could title it "Getting medical care in the US military" or something similar that would let people know what you wish to discuss. You should be able to get copies of all medical tests done, including CT scans.

I'll then bring Connect members who have military service experience to join the discussion.

2. You said you are "dealing with people down here who have no clue what MAC is" - I think there are several people sharing in this discussion thread that have experienced this, as well as misdiagnosis.

@dixer @Paula_MAC2007 @suttonmac2009 @katemn can you help provide insight into Melissa's question: "Based on your experience, is there really anything that can be accomplished in ONE appointment for a MAC infection?"

Melissa, I'm glad that you have at least been able to secure a second opinion and hope the community can help you prepare to get the most out of these 2 appointments.

Colleen
Connect Community Director

PS: Let me know if you need help starting a new thread in Just Want to Talk.