Skip to Content

AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

Want to 'talk' to anyone struggling with histoplasmosis.

I have already lost my frontal vision in my right eye and have histoplasmosis also in my left frontal vision. No treatments have been offered to me!!!!! Waiting to loose sight is very stressful and holding my job is getting harder. I do not drive at night because the lights are like lasers and only having one 'good eye' to see anyway!!! Why am I able to have a drivers license??!! At the DMV I totally did NOT even see a whole page that was JUST NOT THERE but the lady assured there was more to the vision test to read, but i passed??? Has anyone been offered any treatment for this disease? I was raised in Ohio surrounded by farm lands, how about you? Incidently I sat here and cried when I found all of you who are also frustrated with Histoplasmosis...

There are currently 19 replies

Sort Replies Oldest to Newest


Re:Want to 'talk' to anyone struggling with histoplasmosis.



My husband was diagnosed with disseminated histoplasmosis the first of February. He is on sporanox and is doing well. He started with the ulcers in his mouth. While he was in the hospital for 3 weeks they had him swish and swallow with Nystatin and also was using something they made called magic mouthwash. he would swish and swallow before meal so he would be able to ear. He had become anorexic as he could not eat for the pain and has lost 27 lbs in 3 weeks. Dr's were awesome. Histoplasmosis was the very first thing they were looking for but it takes many tests and time for results to get diagnosis. Did cortisol stimulating tests yesterday and hope that it has not affected his adrenal system. His histo had gotten in lymph system and digestive system.
The Nystatin and the magic mouthwash was a God send for him and the mouth ulcers.


Re:Want to 'talk' to anyone struggling with histoplasmosis.



hi and God bless everyone with this horrible disease-i have been through hell with disseminated histoplasma,it took drs a year to figure out it was histo,i was told i had a brain tumor and my dr laughed at me when i told him my systoms,finally my dentist found lesions in my mouth,i feel weak and sick,my liver and spleen are enlarged i have contant headaches . on sporax about 4 months ago but the lesions are still there,i fear its spread to my brain and eyes but the drs seem not to care,i live in california and i think the drs are not familar with histoplasma and really dont know how to treat me.sometimes i feel really depressed and feel no one understands.thanks for listening.


Re:Want to 'talk' to anyone struggling with histoplasmosis.



I've had occular Histo for about 15 yrs. At first I receive laser to my left eye. I lost 1/4 of my vison. Then 18 months later, my right eye was lasered. I lost may 1/8 of my vision in my bi focal region.
Then in 2007, my right eye activated again. This time I received the avastin injection. I probably lost another 20%, but some vision loss came back after 6 weeks. No further activity since. However, since my left eye is so bad, I have started having some double vision in certain types of lighting. The scaring is now slightly in the macula area. Not always enough stimulus getting in.
I was seeing a doctor in Indianapolis for years. He has since relocated. I seen his replacement a few times, but we obviously clash. So, I have found a doctor in Louisville, KY. He is very knowledgeable about histo and he compassionate too.
Dana Mahaney
Indiana


Re:Want to 'talk' to anyone struggling with histoplasmosis.



ENJOYED WATCHING THE FIREWORKS TONIGHT,, YOU NEVER KNOW WHAT THE NEXT YEAR HOLDS.. MAYBE I WONT BE ABLE TO SEE NEXT YEAR....SCARY......


Re:Want to 'talk' to anyone struggling with histoplasmosis.



so does anyone know of any latest treatments to preserve the sight that we still have left before abnormal blood vessels appear in the fovea area? My doctor doesn't mind waiting until it continues to progress because he can see just fine out of his own eyes... like to sign his paycheck....i need a caring compassionate dr. anyone know any..?// nobody knows about his disease in central new york.... HELP, PLEASE... THANKS....


Re:Want to 'talk' to anyone struggling with histoplasmosis.



blackballoon: Hi, sorry to hear what your going though. It is difficult and scary. doctors where i live don't know anything about OHS because i don;t live in the histo belt.. far from it.. upstate new york, I have never been to any of those states, very strange. It seems like you live in a good area with knowledegable doctors who know about histo. I have been online and see drs from cincinatti and cleveland that seem to know about histo. Let me know how you are doing and if you know of any drs that are good. Thanks


Re:Want to 'talk' to anyone struggling with histoplasmosis.



I balled too when I read all of the things people are saying about Histo. It doesn't seem reassuring at all and it seems much worse than the doctors are making it seem. I feel like a specimen to them and nothing else. Just call me or text me or something. 513 485 0222


Re:Want to 'talk' to anyone struggling with histoplasmosis.



My name is Elle. I am 25 years old and pursuing a master's degree. I'm really scared about the injections in my eye. I'm scared I'm not going to get my vision back and that it's going to get worse. It's terrifying to drive now. I can't focus on homework because it's so hard to see the words, especially if they are tiny print. I just want to talk to someone. I live in Cincinnati. I want to feel normal again.


Re:Want to 'talk' to anyone struggling with histoplasmosis.



Hello everyone. I'm an Ocular Histoplasmosis patient with a fairly successful story so far. I attribute much of the successful retention of my vision to my retinal surgeon. He has started a blog recently and encourage all of you to visit the site and sign up for updates. Each posting is fairly brief but informative and they come every few days.

Note that the site states that it is for patents of Macular Degeneration and Diabetic Retinopathy. As many of you already know, those of us with Ocular Histoplasmosis can learn from published information on these other diseases as they have similar results and treatments.

You can find his site at: http://retinaeyedoctor.com/

I honestly believe that knowledge is power. Arm yourself with as much credible information as you can to help navigate the future of your vision. Best of luck to all of you!


Re:Want to 'talk' to anyone struggling with histoplasmosis.



I am sorry that your daughter is allergic to the itroconazole. The other medication is Amphertercin B this med is only given through an IV and is a very brutal drug. They call it shakin' baby medicine. It is a hard drug but it saved my sons life. I hope that this helps.


Re:Want to 'talk' to anyone struggling with histoplasmosis.



I know that this topic is old but I came across it while looking for others who have stuggled and are surving with histoplasmosis.
My four and a half month old baby was diagnosed with Disseminated Histoplasmosis Back on 11/21/08. I almost lost my son twice. His liver, spleen, kidneys and heart were affected by this deadly disease. He still has permenent lung infiltration do to this. It hard to get anyone to listen to me about the severity of the disease. I believe that the government needs to do more research and to find out where the moere consentrated areas are. They also need to make people aware of the disease befrore any more people go blind or die from it. I watch how this disease has turn my once healthy little baby boy into a very sickly little boy. Good luck to all of you.


Re:Want to 'talk' to anyone struggling with histoplasmosis.



Hi, We just found out that my daughter has histoplasmosis. I would like to know if anyone has had any success using natural things. I've read that garlic and cranberry can. She is allergic to the itranazole and so we are trying another med. If anyone can offer any suggestions for us to try I would appreciate it.


Re:Want to 'talk' to anyone struggling with histoplasmosis.



I just wrote a long and drawn out saga of what I am going through but when I hit the add button it again asked for my password which I supplied and it dumped my story. So frustrating so here goes, will this post? And yes I was signed in


Re:Want to 'talk' to anyone struggling with histoplasmosis.



I am blessed not to be at that point, but my heart goes out to all I am reading. I wonder how you were all exposed to this disease? It seems so unfair. You may want to look at an article where contractors in Iraq were knowingly exposed to mass quantities of pidgeon droppings without protective equipment. http://www.tampabay.com/news/military/article81106...
Why people think Histoplasmosis is not a serious, life altering significantly challenging issue that we should protect people from obviously does not know anyone who braves it daily. God Bless you all!


Re:Want to 'talk' to anyone struggling with histoplasmosis.



I had histoplasmosis right lung a mass took sporanox for one year will this rx not work on histo in the eye? my lung clear but i do have damage left behind. sherrel posey RN rickposey2@aol.com


Re:Want to 'talk' to anyone struggling with histoplasmosis.



I have been struggling with this awful curse for 1year now, I was initially diagnosed 5 years ago, when it only affected my right eye, the vision loss to one eye wasn't so bad cause the "good eye" compensated. but last may my left eye began leaking and has yet to stop. I have had what is called PDT with an injection of kenolog 3 times and then this past march a new drug called Avastin is being used to which I have had to date 6 injections with no leaks being stopped. I was an LPN which I can no longer do due to my visual aquity being 20/400 in both eyes, I now am dealing with a cataract due to the kenolog injections.I did get lots of help through an organization called The Blindness and Visual Aid Services, but I am still very frustrated and getting depressed at not being able to drive unless it is absolutely necassary, and not working has really depressed me. Who wants a "legally" blind nurse taking care of them? I read messages on another board where many people have had much success with the Avastin, but for some reason I have not. If any of you have not had it give it a try maybe it will work for you.
Good luck to all with this horrible disease


Re:Want to 'talk' to anyone struggling with histoplasmosis.



Hi, My name is Karen and I am 49 years old and just last week diagnosed with OHS. I have had the cortisone shot in my right eye and the laser treatment just this week. I am feeling very distraught and depressed. I know I should not worry about the future but am very afraid of going blind. The doctors don't really seem that concerned nordo they offer any assurances. Have you learned anything new or can you offer any hope?


Re:Want to 'talk' to anyone struggling with histoplasmosis.



Hi Colleen! Sooo happy to hear from you and have someone to finally relate to. If u ever want to chat you, or anyone with Histoplasmosis can email me at rho423nda@yahoo.com I, too, do never drive in rain! I try not to drive at all except to and from work and to the store (locally preferred)


Re:Want to 'talk' to anyone struggling with histoplasmosis.



Hi, I have histo and have been dealing with it for a little over 20 years. As for treatment, I have been given steroid shots in both eyes at various times over the last twenty years when the histo was ‘active’.

I have had 4 ‘active’ incidents in the last 21 years or so. Currently I am dealing with an ‘active’ case again -- since last July and have been told that there is a possible treatment that may be available sometime this year. It is a shot that will be given in the eye and is supposed to shrink scars.

As a side note (because I cannot stand the idea of being passive with this) I pursue a diet and nutritional supplements that ‘may’ help with macular degeneration. (some say it helps, some say it doesn’t , , , ,) Honestly, I have no proof that it has helped, but I will say that my vision has improved at various times in both eyes. The other comment I will make is each time I have had an ‘active’ incident has been after a particularly stressful period in my life, so now I do everything I can to keep stress low and boost my immune system.

Right now, I can't drive at night, I don'et drive in the rain and I don't drive anywhere that I have to get up alot of speed. I, too struggle with my job. We all have a period of freaking out when it occurs, but we can't just sit back and not try to keep moving forward!!


Log in to Post a Reply