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Anyone out there diagnosed with disseminated histoplasmosis?
Infectious Diseases | Last Active: 1 day ago | Replies (21)Comment receiving replies
Hello, I realize a lot of these comments are several years old. But if anybody is still checking this thread, I could use some advice regarding histoplasmosis.
I was diagnosed several months
ago, And have been prescribed Itraconazole for 3 months 2Xs a
Day.
I haven’t had any problems with the medication, but have experienced so many negative health issues in the last year or more. I have wondered if it might be Disseminated histoplasmosis. And I’m concerned if only three months on it is all would be enough to clear everything up
I have a follow up CT scan and doctors appointment with my pulmonologist the month after I finish the medication
My oxygen levels have been very low and my blood work is showing lots of activity related to the liver and possibly kidneys. I’ve wondered for a while if I might have pancreatitis as well.
But I haven’t had any tests done that would check this yet.
I Believe I do have a low immunity I was diagnosed with hyperparathyroidism several years ago, And have some new health issues since then related to lungs and heart. my regular doctor thinks that all of these new health issues are related to me being overweight. I am not so sure.
Just wanting to talk to others who have had experience with this illness. Thanks.!
Replies to "Hello, I realize a lot of these comments are several years old. But if anybody is..."
Hyperthyroid or Hypothyroid does not make you immune suppressed. I am on immune suppressants because I have Crohn’s Disease. I also have 2 other auto immune diseases. I had my Granuloma removed when it was found accidentally on a well visit Calcium Heart Scan on 12/12/24. I went to see a Thoracic surgeon. She initially thought it was a Carcinoid Tumor. So whether it was or not she felt it needed to be removed because of its size. I had VATS lung surgery on 2/3. During surgery she did a frozen biopsy and the Granuloma was found still to contain many live cells of Histoplasmosis as well as a Lymph node. I just got in to see an Infectious Disease doctor for my Lymph. I will start a loading dose of liquid Itraconazole since it absorbs better than pill form. After 2 days of taking it 3 times a day I will move to 2 times a day for a month. But after 7 days I get my first labs done. If my Liver is good I continue, otherwise he will switch drugs. I was asymptomatic so no symptoms. I will most likely be on it until my antigen numbers show it’s no longer high and normal. I believe labs will be done monthly.
Also, you should have been advised to see an Infectious disease doctor. I chose one that specializes in Histoplasmosis.
Hello @hoobuck75. I've had lung cancer for the past five years, so I have regular CT scans of my lungs. Over a year ago I had a 1 cm nodule appear and my doctors were all convinced that my lung cancer was progressing. A couple of biopsies later they diagnosed the nodule as histoplasmosis. An infectious disease doctor prescribed itraconazole for three months. My liver and kidney counts were impacted over those three months, so I did not remain on the meds any longer. The level of histoplasma in my blood stream was reduced while on the medication, but the nodule did not go away. It still appears on my CT scans (every 3 or 4 months), it has not gotten any larger, so my team is not concerned with it at this time. I wasn't experiencing symptoms, and if I wasn't scanned on a regular basis I may have never known about the histoplasmosis, but others can experience symptoms.
How long had you been on the itraconazole? Is there a plan to continue with that, or take you off of it?
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Hi @hoobuck75, I'm tagging a few members like @susan5051 @dtorelli @ckm @vmorton @lbucky who have experience with histoplasmosis and can share their thoughts with you.
Hoobuck75, have you had further testing done to rule out re-infection and find out what is going on?