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.