Tuberculosis-with hyperpigment/vitiligo/polyendo, c-spine, scoliosis, sialendectomy/lymphectomy, NASH, is it too late for treatment?

Hi--
I have been suffering for 15 years with vitiligo/mucosal blue/black hyperpigmentation, dx with polyendo deficiency but never had any individual glands tested or treated despite the obvious adrenal symptoms.

My skin changes began suddenly spreading rapidly within a month along with elevated ALTs and ANA. I was tested for everything under the sun and it was discovered that I had antibodies to HepC, but there was no test for the virus and my liver biopsy showed a normal healthy liver, perhaps with the beginnings of fatty liver, but no infection/inflammation, also degenerative disk disease. I also had a very classic positive ppd/TB test and an encapsulated tubercule. They told me that because the tubercule was encapsulated, I was in no danger. I asked if my sudden problems were caused by this, and they said no, that despite my normal liver biopsy, they felt I had interferon, gave me a year to live without interferon treatment and offered me co-treatment with INH.

Because both drugs were experimental at the time and I was convinced I was dying of liver disease. I took the interferon and declined the INH. I became horribly ill, developing severe endometriosis requiring a hysterectomy, worsened destruction of my endocrine system, physiologic and mood changes, worsening of my spinal problems. When the test became available during interferon treatment, I tested negative for the Hep C virus.

While my doctors felt I was "cured", I still felt horrible sick and with every passing year had more problems that had no origin, meningitis with no cause, cervical lymph/sialendectomies whose biopsies never bothered to test for tb, just showed chronic inflammatory cells and benign hyperplasia. Cervical stenosis, spondylitis, degeneration--I've undergone a fusion with plate and four screws and foramentomy. My whole spine is degenerating and fusing with spinal compression in spots throughout, along with kyphoid scoliosis between my shoulders that is very painful.

I have been diagnosed with copd due to chronic bronchitis, sjogrens syndrome, very severe non-alcoholic steatohepatitis where every cell of my liver is a full of fat as possible and insignificant fibrosis--not end stage liver disease yet.

I am disabled and dying and I don't know why. When I went to Mayo clinic liver transplant center, they referred me to consults and said that they felt my HepC diagnosis was incorrect, that I test false-positive or perhaps had it once but fought it off. They felt the interferon worsened my condition and that the majority of my problems were due to multiple endocrine problems, when I saw the endocrine guys, I was angered that, despite evidence of secondary adrenal deficiency per ACTH stim and cortisol, and obvious primary adrenal hyperpigmentation/vitiligo, they refused me steroids, and even questioned me taking synthroid for hashis hypo, and instead asked me if I'd considered treatment for tuberculosis. I thought they were nuts.

But now reading up, TB seems to be prominent in all the illnesses/conditions I've had, and that even with a seemingly small infection, a single encapsulated tubercule in the lung, drastic problems can occur if the tb gets in the blood.

I'm so sad because I feel like now I'm too damaged to take treatment. But I'm dying either way, so I feel like maybe I could get better if the TB were treated finally and even if I get some fibrosis, it would heal because the TB is gone. Also, I don't know how I would deal with being off the steroids, I don't know if I can take them and take the treatment at the same time.

Have I missed the boat? Is anyone here as sick as me? Why didn't they explain this better to me, why did the tons of specialists I've gone to over the past fifteen years ever once test my tissue or spine for TB. Why didn't any of them recognize this, like I think the doctors at Mayo, and even my own rheumie did? Now it may be too late for me to take the treatment for it. I'm so so scared now. I thought my problem was HCV and I've been pcr neg for years, only to find out another disease, in many ways far worse, has been silently destroying me off and on for years and the medicines they give me to help the symptoms only make the disease worse.

I would really like to hear from someone. Why don't the doctors take TB seriously? Why do they think it always has to be in the lungs?

Is there anything I can do at this point? Has anyone sick like me with liver disease taken tuberculosis treatment?

I'm sorry this is so long, it's just so complicated to explain it all and what has happened. I'm so so so scared.

Tweet