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Yes, there are details I left out initially. I feel I have so much information, that I was afraid of dumping too much in the initial thread. Now that I know you can handle it....;)

I was 'sick' 11/06-2/07, or thereabouts. I thought that I had a very bad cold/cough that lingered for months. I did have night sweats, but thought it was nothing significant (maybe menopause starting?). Had a fever for a few days, but it went away, so again didn't think much of it. Was v-e-r-y tired, but attributed that to work, kids, night school, busy mom stuff. I called the dr to go in while I felt sick, but I couldn't get an appt that didn't conflict with my busy schedule, so I just never saw the dr....looking back, ridiculous behavior on my part!

So I just plugged along until I finally quit coughing around 2/07. On 5/1/07, I was feeling generally well, but went to the dr one day after work because my heart 'felt funny'. Honestly, I thought it was stress/anxiety because I was working like a dog! I mentioned the cough that I'd had previously but it had cleared up months earlier. Dr took a chest xray and it showed a small area that looked like cancer. Lots of tests followed. The initial assumption was that cancer had spread from the lung to the liver (later determined to be FNH on the liver and histo on the lung). So I wasn't technically 'ill' when I went to the dr that day. My heart tested fine. I think it was stress and anxiety that day at work, but they found all this other stuff.

While I was in the hospital after the 1st liver biopsy and lung surgery, I had an oncologist. She would come into my room everyday and tell me that I didn't have cancer, but she kept coming back, so I didn't quite believe her. The final time I saw her she told me that lung & liver pictures like mine (MRI & CT) are 99% cancer...I am in the 1% that fool them. Biopsies kept coming back negative. That was last time I saw her and they finally told me I definitely didn't have cancer. There was lots of talk of TB, sarcoidosis and many tests for viral, bacterial and fungal, but no definitive diagnosis in Nebraska.

My rheumatologist suggested Mayo in Rochester MN (an easy 6 hour drive from NE). I had every test under the sun in NE and then re-done at Mayo. The Histoplasma antigen was discovered in a blood test done 6/07 at Mayo. End of July 07, I was given a diagnosis of disseminated histoplasmosis and an RX for 1 yr of itraconazole. ID dr at mayo says my body actually did a good job handling the histo, evidenced by the necrotizing granulomas in the lung and non-necrotizing in the liver. It apparently spread because I am immune-suppressed because of the rhumatoid & methotrexate. Had previously been on prednisone, but don't know if that played into the picture or not. One thing that the Mayo doctors commented on several times was my appearance...I didn't 'look sick'. Well, I wasn't sick at the time.

So, no TB but I don't think they ever ruled out sarcoidosis. I have a new liver specialist in Nebraska. He says the GH could be cause by sarcoid, MXT, histo or a combination.

TNF-alpha inhibitors are not familiar to me, so I don't think I have ever used them. I have used only MXT, prednisone, and NSAIDs. I now take only nabumetone on rare ocassions when my arthritis is particularly bad. It's funny you mention that the MXTis sometimes used sometime to treat GH. I remember reading that somewhere.

So, I finished the itraconazole last month after being on it for a year and having montly liver function tests. The liver dr says to 'go live your life'. I feel good and I look much better than when this all started because I lost 40 lbs, finished school, changed jobs, have a much healthier and balanced lifestyle. Stress is not out of control as it was. Life's good! So I am living my life, but still wondering about all of this. I so appreciate your time and thoughts!!! Jackie
[QUOTE=jackie1962;3729453]Yes, there are details I left out initially. I feel I have so much information, that I was afraid of dumping too much in the initial thread. Now that I know you can handle it....;)

I was 'sick' 11/06-2/07, or thereabouts. I thought that I had a very bad cold/cough that lingered for months. I did have night sweats, but thought it was nothing significant (maybe menopause starting?). Had a fever for a few days, but it went away, so again didn't think much of it. Was v-e-r-y tired, but attributed that to work, kids, night school, busy mom stuff. I called the dr to go in while I felt sick, but I couldn't get an appt that didn't conflict with my busy schedule, so I just never saw the dr....looking back, ridiculous behavior on my part!

So I just plugged along until I finally quit coughing around 2/07. On 5/1/07, I was feeling generally well, but went to the dr one day after work because my heart 'felt funny'. Honestly, I thought it was stress/anxiety because I was working like a dog! I mentioned the cough that I'd had previously but it had cleared up months earlier. Dr took a chest xray and it showed a small area that looked like cancer. Lots of tests followed. The initial assumption was that cancer had spread from the lung to the liver (later determined to be FNH on the liver and histo on the lung). So I wasn't technically 'ill' when I went to the dr that day. My heart tested fine. I think it was stress and anxiety that day at work, but they found all this other stuff.

While I was in the hospital after the 1st liver biopsy and lung surgery, I had an oncologist. She would come into my room everyday and tell me that I didn't have cancer, but she kept coming back, so I didn't quite believe her. The final time I saw her she told me that lung & liver pictures like mine (MRI & CT) are 99% cancer...I am in the 1% that fool them. Biopsies kept coming back negative. That was last time I saw her and they finally told me I definitely didn't have cancer. There was lots of talk of TB, sarcoidosis and many tests for viral, bacterial and fungal, but no definitive diagnosis in Nebraska.

My rheumatologist suggested Mayo in Rochester MN (an easy 6 hour drive from NE). I had every test under the sun in NE and then re-done at Mayo. The Histoplasma antigen was discovered in a blood test done 6/07 at Mayo. End of July 07, I was given a diagnosis of disseminated histoplasmosis and an RX for 1 yr of itraconazole. ID dr at mayo says my body actually did a good job handling the histo, evidenced by the necrotizing granulomas in the lung and non-necrotizing in the liver. It apparently spread because I am immune-suppressed because of the rhumatoid & methotrexate. Had previously been on prednisone, but don't know if that played into the picture or not. One thing that the Mayo doctors commented on several times was my appearance...I didn't 'look sick'. Well, I wasn't sick at the time.

So, no TB but I don't think they ever ruled out sarcoidosis. I have a new liver specialist in Nebraska. He says the GH could be cause by sarcoid, MXT, histo or a combination.

TNF-alpha inhibitors are not familiar to me, so I don't think I have ever used them. I have used only MXT, prednisone, and NSAIDs. I now take only nabumetone on rare ocassions when my arthritis is particularly bad. It's funny you mention that the MXTis sometimes used sometime to treat GH. I remember reading that somewhere.

So, I finished the itraconazole last month after being on it for a year and having montly liver function tests. The liver dr says to 'go live your life'. I feel good and I look much better than when this all started because I lost 40 lbs, finished school, changed jobs, have a much healthier and balanced lifestyle. Stress is not out of control as it was. Life's good! So I am living my life, but still wondering about all of this. I so appreciate your time and thoughts!!! Jackie[/QUOTE]

That is quite a story! It's weird that you had to go to the Mayo clinic to get Histo diagnosed. While a disseminated mycosis is not exactly as common as a garden-variety bacterial pneumonia, it's right up there on the differential of someone who has as subacute, grumbling presentation with granulomas in the liver (and I guess the lung in your case as well).

A couple of things: sarcoidosis isn't something you necessarily need to "rule out". Sarcoid is generally the diagnosis when you have non caseating granulomatous inflammation in the absence of another cause. Sarcoidosis can also present classically, where it's easy to make the diagnosis, but much of the time it's more insidious. In your case, when the diagnosis of histoplasmosis was made, it was a very reasonable explanation to your pulmonary and hepatic granulomas.

The question I have still though is, when you started the itraconazole, did you actually start to feel better than you did before you had taken it?





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