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hepC tx histoplasmosis
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hepC tx histoplasmosis

has anyone ever gotten histoplasmosis while being immune suppressed on interferon? i saw my hepatologist today, and he thinks i may have that. he wants me to make another appt. with the lung specialist immediately. if you've read my previous posts, you know that i've had a lot of problems for the last 6 weeks or so. my liver enzymes went back up after 2 weeks off tx, and my kidney levels are off too. i have also had breathing problems, and a CT scan showed an infiltration of some kind. i stayed very immune suppressed the whole time on tx. i am so frustrated, because i keep getting sent to different specialists who tell me that something is wrong, but they don't know what it is. i am about to just forget the whole thing and resign myself to the idea that this is just the way it is going to be. i don't even know why i am posting; i guess i just needed to vent after my appointment today.
anyway, to anyone who reads this-thanks for listening.
kk7788
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Avatar_m_tn
My son had a bone marrow transplant for leukemiain 1996 . He dvelopedoer the ensuing months strange symptoms as seizurres, retinal bleeding , Neurological issues . After many months searching what the infection was , a doc at Ohio Staee University diagnosed it as histo . My son was extremely immunosuppressed for months from massive chemo. He's alive and glad of it . Anyway the docsfigured as his immune system became more normal the symptoms woul cease progression . Thatis what happened . But find a doc who will look at this thoroughly . Opthomology and neurology are good . Infectious disease docs are helpful . Hope this was of some help.


                                                                             dickl
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yes, it did help. i have an appointment with an opthomologist on thursday (next week). i have been having eye pain and trouble too. i didn't really consider that as possibly being connected to the other stuff, but i looked it up on the net, and now see how that all makes sense. around the same time i was having such bad breathing trouble, i woke up with a blood spot in my eye. they are constantly dry and red, and they feel almost bruised when i rub them. now i wish i had told my hepatologist about the eye pain. hopefully, i will get some answers at the opthamologist. i didn't know there were infectious disease doctors, so that is very helpful info. i will look for one. now that my immune system is coming back, could this go away on its own? (assuming that is what i have) my opth. appt. isn't until thursday. should i make it sooner, or is this something that can wait until then?---you know what is frustrating; i have spent a small fortune on doctors, and this is the first time i have felt like i've gotten an answer or am even talking to someone who has a clue. basically, they just keep passing the buck to different specialists.
i can't imagine going through that with a child. this is nothing compared to that. my heart goes out to you. it sounds like he is doing well now???
thank you for responding.
kk7788
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I just saw your post and had to look up histo. Apparently, it's fairly common in the eastern US:

quote>Histoplasma capsulatum is found throughout the world.

It is endemic in certain areas of the United States, particularly in states bordering the Ohio River valley and the lower Mississippi River. Positive histoplasmin skin tests occur in as many as 80% of the people living in areas where H. capsulatum is common, such as the eastern and central United States.<end quote

I did have 'eye problems' during tx and had them examined. The doc found a 'cotton wool spot.' He explained that it was a result of a hemorrhage that he chalked up to aging. . . I didn't tell him I was on tx.

good luck

Max

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Avatar_m_tn
The histo is common fungus from bird poop that is in the air in eastern u.s.  It does not adversely affect people with normal immune systems . It was very difficult to get ansewers for my son's unusual problems from chemo . My wife and I devoured any info we could , knowledge is your best tool. Our docs  thougt it was a parasite found in the 3rd world commonly . It winds up in the brain . A  biopsy was taken of the vitreous fluid of the eye and showed nothing .We found a guy at O.S.U. AND HE NAILED IT . My son is cured of a nasty form of leukemia but will live with serious side effects for life . But he slowly grows and gets better. Your histo will slowly cease causing problems but the damage , if any, is lasting . My son had 3or 4 laser surgeries of the retina to repair bleeding . The histo these many years later has been a non factor for along while . They sometimes use anti-fungal drugs in such infections but their effectivness isn't great and I think they have side effects . I can ramble on but happy to help .
   I am a hep-c , cirrhosis patient , doing well . I am learning all I can about my illness annot all info comes from my hepatologist,

                                                                                                    dickl

                                                    
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i am so glad to hear that your son is cured. i am sure it is very difficult to watch your son suffer side effects, but it must be a huge relief to know that he is not battling cancer anymore.
i am assuming you are on tx? how did you find out about the cirrhosis? my liver enzymes are elevated again, and my doctor mentioned the dreaded "cirrhosis" word to me yesterday. he said there is no way to tell without a biopsy, which is something i am not too thrilled about doing-obviously.
we live in oklahoma on a lake. our house is nestled in on a rocky hillside that is covered with little bat caves. we see many of them at night. also, we have a small garden right between our back door and the steep rock incline where we have always fed the birds and provided a place for them to get water and bathe. noone told me about the danger, so while i was on tx, i went out and worked in that garden.
my neutrophil count fluctuated between 140 and 600 most of the time. i finally got a complete printout of all my records, and found that i was in severe danger many times. i don't think my hepatologist even read my results throughout tx.
anyway, if i have beaten the hepc, it will all be worth it-i think.
how are you doing overall? what is your prognosis?
kk7788
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Avatar_m_tn
We live in the hills of southern Ohio, most the more advanced medical care happens in Cicinnati . I have battled addiction most my adult life and I am now 59. I had hep-b in the early seventies and probably got hep-c then also, although it was undiscovered in those days . So I recovered and drank moderatel off and on and got addicted to pain killers sfter back surgery 8 years ago . Last Jan. I had my gall bladder removed and got very ill , they did a biopsy and determined I had hep-c and a very damaged liver . I have recovered nicely over the past year .My hepatologist said my liver was in too bad of shape to withstand hep treatment and we would stand pat with diuretics , low sodium diet , and 1500 of anything liquid per day. I could go some time longer till the virus makes my liver deteriorate and need a transplant . So no more alcohol and I've not used pain killers for the past year. So comparedto a year ago I feel very fotunate . I am afraid I know very little about the treatment for hep-c , although I know it can be tough .Good luck .

                                                                                dckl

                                        
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KK
Did you speak to your Dr regarding the chance that this may be an interferon induced sarcoidosis?
Evangaline
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evangelina-yes, but my liver doctor didn't say too much about that.
dickl-it sounds like you have a great attitude about it all; i know that makes a big difference. i know a lot of people on here have mixed feelings about herbs, but milk thistle does help the liver. my enzymes went down after a few weeks of use at one time. i only recommend it secondary to treatment, but if you can't undergo tx, then you should talk to your doc about it.
i'm keeping the faith as well as i can, and it sounds like you are too. i kind of feel like it's time for me to put my trust in God, becasue the doctors don't seem able to do much. that doesn't mean i'm not going to follow up, but i am getting really tired of doctors-at least for the moment. maybe i just need a doctor-free weekend to get my attitude right again, but still, i'm putting my faith in God.
kk7788
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Avatar_m_tn
take a break , do something you enjoy or if you enjoy , gettin laid back. Take a break from this message board stuff .


                                                                                        dickl

                                                            
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Avatar_f_tn
excellent advice
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