Negative for MTB.
Our IDS already somehow expected it. She told me before we were discharged that she is still confident it is TB even if GeneXpert comes negative given the surgical pathology report.
Maybe this is false negative???Attached with the GeneXpert result is the waiver signed by Twin A’s dad, saying that the result could be inaccurate due to the less than ideal or below-lab standard specimen submitted.
But this does not help my anxiety. I was told at TB DOTS that GeneXpert is already highly sensitive and I feel the AFB tests could be negative as well…that they may not have enough bacteria to work with or may not even have cultured any MTB 😓…I have yet to claim the AFB, GSCS, and TB PCR from PGH Medical Research Lab. And it my not tell me anything, too.
What’s worrisome is my daughter’s uric acid is still persistenly high despite regular intake of allopurinol. Uric acid as of yesterday is 9.18 mg/dL, normal value is 2.6-7.2.
But I was told at TB DOTS that it’s not that yet too worrisome since it’s not 5x higher than normal.
FNAB result and cytology report are not accessible to me yet…
The problem is our IDS took a leave of absence this week and we were scheduled to have the check up on Thursday. 😱 And I have been referred back to our hema-onco regarding the high uric acid.
The only thing that is keeping me hopeful is that Twin A is improving, ergo, the anti-TB med is working. The fact that she can walk back home from church is already a huge improvement over how she was two to three weeks ago.
But then, the threat of lymphoma is still there. My fear is that we might become complacent because we relied on the surgical pathology report, believing it is TB when we might be delaying treatment of possible lymphoma.
But I can’t do anything about it until the other test results, especially the FNAB and cytology reports come in.
Maybe I could request for an MRI, earlier than scheduled, which is originally set two months later? What would an MRI reveal? Maybe nothing. Maybe it would show less inflamation or the level of inflammation is the same because the anti-TB med is not addressing it?
I am killing myself with worry.
To keep me calm, I bought myself ice cream. That’s all I can do.
And pray.
I am going nuts.