Well,I made it through my 9 months of isoniazid with severe steatohepatitis. My bilirubin went up 1 point though still within normal toward the end. 6 mo. marked where my liver started to move from inflammation to fibrosis. I was very fatigued with high lymphocyte after treatment, but my energy is coming back quickly. I am assuming the fibrosis is healing as the pain in my liver area is now infrequent and I'm not so tired and pale.
My vitiligo and hyperpigmentation did not go away, but I have less abdominal pain and gi symptoms. I was not treated for extra pulmonary tb. My spine has worsened and I'm facing lumbar surgery as I'm losing the ability to lift my toes on my left leg. My lymph nodes began to swell like crazy during the last weeks of therapy, and I feel safe to assume that TB is not the cause for my chronic severe lymphadenitis. A PET scan showed uptake in the lymph nodes armpits and buttocks, but the highest SUV I have is 2.1 and 2.3 is the cutoff for lymphoma at the facility. The cervical and jugular lymphnodes that were quite enlarged did not show much uptake at all, they may be calcified or rubbery, not able to absorb.
While I still don't know what is wrong, I will be looking at human lymphotrophic viruses and lyme disease, at least I can take steroids and immunosuppressants without the TB worry, and my gi tract is doing much better, so that is good. One nurse here suggested mycobacterium avian, we do a lot of farming here, or some other mycobacterium infection. I havenot yet gotten retested to see if I seroconverted. I feel fortunate to have been able to receive treatment. I hope this post helps those with other illnesses to know that it is possible to make it through therapy.
Most importantly, I am abstaining from alcohol(and have for years) and avoid meds that irritate the liver, like motrin and antiinflammatories. I try to keep my meds down to a dull roar and eat healthy foods with lots of antioxidants and take vitamins. During isoniazid therapy, I replaced lunch with a high protein, low carb, high fiber and high vitamin whey protein smoothie using v8 tropical juice and fruit and probiotic yogurt. This helped my stomach maintain the good bacteria and was filling and soothing, gave me energy and was easy on the liver, and lower in tyramine.
I hope this post helps. I am so glad this site was here the docs, staff, and you all helped alot. Thank you all so so much.
