Anyone out there diagnosed with disseminated histoplasmosis?

Posted by susan5051 @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.

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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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

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@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

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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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@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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My son was diagnosed with Histoplasmosis in May of 2020. He has no respiratory symptoms but has a large mass around his aorta and left lower lobe. He also has a mass on his kidney. He is miserable with the pressure. Does anyone have experience with such an issue? How long does it take for the body to absorb dead cells like this mass? He has been taking an Antifungal for 6 weeks.

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@kjwestphal5

My son was diagnosed with Histoplasmosis in May of 2020. He has no respiratory symptoms but has a large mass around his aorta and left lower lobe. He also has a mass on his kidney. He is miserable with the pressure. Does anyone have experience with such an issue? How long does it take for the body to absorb dead cells like this mass? He has been taking an Antifungal for 6 weeks.

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@kjwestphal5, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about histoplasmosis. I did this so you can connect with @susan5051 @rosemarya @memw and others who have experience with this infection.

According to the Mayo article https://newsnetwork.mayoclinic.org/discussion/infectious-diseases-a-z-who-is-at-risk-of-histoplasmosis-infection/, for those who develop symptoms, they usually appear three to 17 days after exposure and may include fever, chest pain, fatigue, chills, dry cough or body aches.

Complications from histoplasmosis are more likely to develop in infants, the elderly or those with weakened immune systems. Does your son fit into any of those categories? Does he work with soil?

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@kjwestphal5

My son was diagnosed with Histoplasmosis in May of 2020. He has no respiratory symptoms but has a large mass around his aorta and left lower lobe. He also has a mass on his kidney. He is miserable with the pressure. Does anyone have experience with such an issue? How long does it take for the body to absorb dead cells like this mass? He has been taking an Antifungal for 6 weeks.

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Hi. I’m an adult who was treated last year at Mayo for an unidentified fungal infection/disseminated histoplasmosis. I was successfully treated with the antifungal Itraconazole. I never had any masses or pressure. My illness was discovered incidentally. My understanding is that possible sources of this type of infection include bats, chickens, and/or breathing in fungal spores from soil containing bird droppings. I wish your son the best of luck in recovering from his illness.

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@colleenyoung

@kjwestphal5, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about histoplasmosis. I did this so you can connect with @susan5051 @rosemarya @memw and others who have experience with this infection.

According to the Mayo article https://newsnetwork.mayoclinic.org/discussion/infectious-diseases-a-z-who-is-at-risk-of-histoplasmosis-infection/, for those who develop symptoms, they usually appear three to 17 days after exposure and may include fever, chest pain, fatigue, chills, dry cough or body aches.

Complications from histoplasmosis are more likely to develop in infants, the elderly or those with weakened immune systems. Does your son fit into any of those categories? Does he work with soil?

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My son is a very healthy 21 year old going to college in Iowa. He worked out everyday. He lives in an apartment and works at a bank. The pressure from the mass is his only symptom. They told us he had lymphoma at first then realized it was actually histoplasmosis. They gave him strong pain pills and sent us home. We had to insist he needed to see an infectious disease doctor who then started him on his antifungal 6 weeks ago. I think it could take a while for his body to absorb the large mass in his chest. It makes it hard for him to breath. Plus, he is so fearful of COVID-19 now he doesn’t leave his apartment.

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@susan5051

Hi. I’m an adult who was treated last year at Mayo for an unidentified fungal infection/disseminated histoplasmosis. I was successfully treated with the antifungal Itraconazole. I never had any masses or pressure. My illness was discovered incidentally. My understanding is that possible sources of this type of infection include bats, chickens, and/or breathing in fungal spores from soil containing bird droppings. I wish your son the best of luck in recovering from his illness.

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Thank you for your response. I’m glad you feel better!

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@kjwestphal5

Thank you for your response. I’m glad you feel better!

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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!

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@susan5051

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!

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@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

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@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

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@susan5051

@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

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

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