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susan5051
@susan5051

Posts: 6
Joined: Dec 19, 2018

Anyone out there diagnosed with disseminated histoplasmosis?

Posted by @susan5051, Dec 18, 2018

That is my tentative diagnosis and I am completely shocked as I do not live in an endemic area, and haven't traveled to one, nor can I determine when or how I may have been exposed. Still in a state of shock and trying to figure it all out. Also feeling quite alone as I'm unaware of anyone in my area with this illness.

REPLY

Hi @susan5051, I can imagine having a tentative diagnosis of disseminated histoplasmosis. @pattymac knows about that first hand. @memw and @rosemarya have also mentioned histoplasmosis before and may have some experience to share with you.

Here is some information about Histoplasmosis from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/histoplasmosis/symptoms-causes/syc-20373495

Has your diagnosis been confirmed since you first posted? What treatment has been recommended?

Hi @colleenyoung

Thank you for responding to my post. (Previously, I have been hearing only crickets. 😉). I hope to hear from @pattymac and/or @memw and/or @rosemarya as I know of no one else with DH, especially in the non-endemic area of AZ. My diagnosis was based on findings from a bone marrow biopsy this month, and Dr. Patron tells me that tissue is the gold standard for a diagnosis. Blood and urine lab work completed to this point have all returned “negative” results, which I am told is not unusual with histoplasmosis. I will have more lab work and a follow up visit with Dr. Patron in January, so I hooe to learn more. Right now, I’m just feeling sad and confused as to how I could have gotten this. I do know that I’m receiving the correct treatment and I have confidence in my doctors.

Thank you, @colleenyoung

@colleenyoung

Hi @susan5051, I can imagine having a tentative diagnosis of disseminated histoplasmosis. @pattymac knows about that first hand. @memw and @rosemarya have also mentioned histoplasmosis before and may have some experience to share with you.

Here is some information about Histoplasmosis from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/histoplasmosis/symptoms-causes/syc-20373495

Has your diagnosis been confirmed since you first posted? What treatment has been recommended?

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Oh, forgot to mention, I’ve been prescribed Itraconazole 200mg twice daily, to be taken for a full year. No problems with that med, so far.

@susan5051

Hi, Susan. I am sorry to say that I don't have any information to share with you. My only knowledge about histoplasmosis is that I live in Kentucky, where I am aware that it is present in the bird droppings in the soil here. I know of a local man, a farmer, who had his dad visiting him and helping on the farm some years ago. His dad was from another area of the country and had not been exposed to it to developmany resistance. When he returned to his home state, he developed symptoms that his local doctors didn't identify as being histoplasmosis because they were not looking for it. When his son, my friend, mentioned that he had been in Ky and helping on the farm, he was tested and the histoplasmosis was identified and treated. Some years later my friend, the son, came down with symptoms, and was diagnosed with histoplasmosis. He was not treated with any medication and said that it took a while for him to get over it.

If this sounds like it is something that you think would be helpful to you, I would be willing to contact him for the specifics of these cases.
Rosemary

@rosemarya

Hi, Susan. I am sorry to say that I don't have any information to share with you. My only knowledge about histoplasmosis is that I live in Kentucky, where I am aware that it is present in the bird droppings in the soil here. I know of a local man, a farmer, who had his dad visiting him and helping on the farm some years ago. His dad was from another area of the country and had not been exposed to it to developmany resistance. When he returned to his home state, he developed symptoms that his local doctors didn't identify as being histoplasmosis because they were not looking for it. When his son, my friend, mentioned that he had been in Ky and helping on the farm, he was tested and the histoplasmosis was identified and treated. Some years later my friend, the son, came down with symptoms, and was diagnosed with histoplasmosis. He was not treated with any medication and said that it took a while for him to get over it.

If this sounds like it is something that you think would be helpful to you, I would be willing to contact him for the specifics of these cases.
Rosemary

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Thank you, @rosemarya
I appreciate your response. I can see that everyone’s experience with histoplasmosis can be quite different. It seems odd to me that we don’t hear more about it, at least not in this part of the country. Perhaps there’s more discussion of it in endemic areas. But it can be quite a serious illness, especially if it becomes disseminated, as in my case. I am very grateful that my doctors discovered that I had it and I’ve been able to start my (year-long) treatment. I’ve read and have been told that left untreated, disseminated histoplasmosis can be fatal. I’m sorry to hear that your friend was left to suffer from it and make a slow recovery, untreated! That sounds harsh. I hope he has not had any long-term repercussions from it

Thanks again for your response

Susan

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