Anyone out there diagnosed with disseminated histoplasmosis?

Thank you! I feel for your son. I am glad though, that his illness turned out not to be lymphoma—what a relief! And I’m so glad that you persevered and got your son the help he needed in the form of an infectious disease doctor (a Mayo doctor, perhaps?). That is so important. I’m certain the Itraconazole will help your son, as it did me. It may be best for him to be on the medication over a longer period of time—up to a year—to ensure a complete recovery. And I understand about the fear of Covid—I have asthma and am pre-diabetic. Best for us all to take every precaution and be as safe as possible. Best of luck to you snd your son!

@susan5051- Hello. My husband has just had a flare-up of either histoplasmosis or sarcoidosis so I'm very late in responding to your post. My apologies. Some doctors think that they are the same.

We knew that he had contracted histoplasmosis at a very young age. He had studied pigeon population for his masters and there was a small lighthouse where he worked. TADA! And just before he was supposed to go to Vietnam he went blind and he was diagnosed with sarcoidosis but later was told that he didn't have it. And recently he was hospitalized yet again for a flare-up that started in his lungs. And to make matters worse a CT scan and PET scan showed that there are lung nodules that weren't there before, we do not think. But it did show a huge amount of scarring from his earlier bout.

He is going to see a pulmonologist next week.

The only information that he was able to get was
https://www.mayoclinic.org/diseases-conditions/histoplasmosis/symptoms-causes/syc-20373495
Cleveland and NIH.

He has yet to have a definite diagnosis such as disseminated histoplasmosis. Hopefulluy we will no more after he sees his ne pulomonologist.

I wish you the best

@merpreb Hello. I am so very sorry to hear of your husband’s travails with his improperly diagnosed illness! What a shame his probable histoplasmosis was not properly diagnosed and treated years ago! I hope that he will be seeing a knowledgable doctor now. My infectious disease doctor told me last year that the gold standard for a proper diagnosis of histoplasmosis was tissue, since blood and urine testing frequently come back negative, as was the case with me. I was diagnosed after a bone marrow biopsy which, mercifully, was done under anesthesia. If your husband’s doctor only orders blood and urine tests, I would insist on a tissue collection or change to another doctor. And I believe it would be most helpful for him to see an infectious disease specialist. I will be very surprised indeed if it turns out that your husband doesn’t have histoplasmosis, especially given his exposure to bird droppings from his study of pigeons. The treatment for histoplasmosis is to take Itraconazole, an antifungal, for up to a year. I sincerely hope you and your husband finds the help he needs! I wish you well also. Susan

@susan5051- Thank you. I gave him this information.

I just had s 1.5 lung nodule removed via VATS. They did a frozen biopsy and just got those results back today. The surgeon said they found many active cells of histoplasmosis. I literally had no symptoms. Found the nodule on a calcium heart scan on a well visit. They cut out the nodule so it’s all cleaned out. Thought I was done. No, they want me to see a infectious disease doctor to make sure it has not spread. Well, I have no symptoms and will not allow the painful bone marrow or spinal tap if they even ask me to go through that. . I’ll be ok with urine and antibody blood work. My red and white count's are fine and in fact CBC and CMP are great. I have been through a CT Scan of chest, 2 full body pet scans one was FDG and the other was Gallium Dontatate 68. before VATS lung surgery.
My IBD/Crohn’s doctor said he wants to be included in discussion s with this infectious disease doctor. Your thoughts please.

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.!

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?

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?