Ocular Histoplasmosis Syndrome: The Science Versus the Experience

I am 43, and I was diagnosed with POHS the end of August. Apparently I was told about the histo spots on my eyes about 7 years ago but I don't recall that. Anyway, my kids and I had just moved back to Ohio after 3 1/2 years in WV, and I noticed a distorted/blurry/blind spot in my right eye in mid-August. Have spots in both eyes but so far the ones in left eye are dormant. I went to the optometrist on 8/27 who after doing an exam told me he though it was POHS and was going to refer me to a retina specialist. I went to the specialist two days later, on 8/29, and he confirmed that it was POHS. That day I had a sample shot of Lucentis (my insurance was not yet active) and I just went last week on 10/3 for my first shot of Avastin. At last week's visit they took pictures to compare to the first set of pictures they took at my first visit. The swelling had decreased quite a bit and the blind spot was gone, and my vision had improved from 20/400 to 20/70, 20/32 with the pinholes. That was very encouraging. I however still have distortion in my eye and cannot see straight. The nurse explained to me that the distortion is because of the leaking, and when the leak gets dried up the distortion should go away. I go back 11/7 for my second shot of Avastin and I am anxious to see/hear how my eye has responded. The specialist advised me to go ahead and get new glasses, and I have an appointment the end of this month with my optometrist. I am still driving and working, although driving is very scary because I can't focus and I only drive when I have to and rarely at night. I am a single mom and I am terrified. I know the success rate of the injections is very high but I am still scared. This has totally changed everything, and I have become anxious and depressed, and have just started to experience insomnia. I would love to hear from others who are fighting this disease about your experiences.

Hello, everyone! I have really enjoyed reading everyone experience with this syndrome. It has given me much support. I went on FB to find the site but could not find a FB page. If indeed there is one, please let me know. I have been diagnosed with ocular histo for about 30 years and up until this year on thanksgiving I really did not have any trouble. But on Thanksgiving I ended up in the ER due to bad headache, flashing lights and severe floaters. Of course, they rules out a stroke and a retinal tear and sent me home as having an ocular migraine. Since then I have found out from a retinal specialist that My histo spots in the right eye have activated. I have 3 spots very very close to the macula. She put me on durezol but did not say how long I should take them. I then went to another retinal specialist and he said also to continue them for a month more. Now that I am off them, I have pain in the eye and not good vision. I live and work in the DC area which is extremely stressful...traffic, lifestyle, job, etc. I live alone and have no family/support up here. I am trying to find some research that clearly demonstrates that flashing lights, stress due to driving/work aggravate the situation so that I can demonstrate to my boss that I must avoid any stressful situations. This may allow me to work from home more. I REALLY REALLY NEED THAT. It is just too stressful up here and before taking a month off recently, I was in such adrenal fatigue that I was so tired that I could barely even plug in a light. I am a 57 year old, very healthy eater, certified yoga teacher, practice qigong, etc. but still the stress up here is just too much and has taken a toll on my health. Does anyone know of any research that has been done to prove that stress, flashing lights, driving, etc (all of which aggravate my stress, thus eyes) affect ocular histoplasmosis? PLEASE LET ME KNOW. By the way, I also have histo spots on my lungs and have been diagnosed with COPD, Raynauds Syndrome and I too have arthritic symptoms. THANKS IN ADVANCE FOR ANY HELP YOU CAN PROVIDE.

Namaste~

Hi all, I just turned 30 about 3 months after discovering I have OHS. One day I had a severe pain in my side and three days later, I couldn't see. People's faces were distorted and they looked like monsters, great big chunks were missing out of my vision... I could look at a straight table edge and there would be a circle completely missing out of the edge. A large one. I am a law student, so I thought that it was merely from reading so much in the harsh lighting. When I went to the Eye Institute, the ophthalmologist dilated my eyes and saw hemorrhages in both eyes. The left eye is the only one that has vision affected so far, and so it is the only one we are treating right now. I had Avastin injections into my eye every other week for a while, then every 3-4 weeks. Once he let me go 5 weeks, but the bleed still hasn't stopped seven months later. Because the bleed is so bad (my vision was literally "count fingers" and all I could see was fingertips and palm), and now it is somewhere around 20/400 with missing parts, it has been really difficult. When reading for long periods of time, or really at all, it helps to cover the eye. Otherwise, the strain on my right eye is just too much. My vision in my right should be 20/30, but its 20/80 without corrective lenses. The lenses only get them to 20/50. Anyway, the doctor did the IV test, showing dozens of punched out scars in my eyes. The really odd part? I had a culture done for histoplasmosis at the Infectious Disease Doctor and I have never had histoplasmosis. Yet, I have calcifications effecting my mediastinal and hilar lymph nodes, my parotid gland, my spleen, my liver, and a 12 mm nodule in my lung (with onset of restrictive lung disease). I'm being tested for lymphoma now. The retinal specialist did not perform laser surgery in the beginning because my entire central vision would have been permanently gone. I have more periphery now, so my last shot is next week. (Thank God for small favors!) However, the bleed is directly behind my retina. I'm not really sure what type of surgery he is planning on doing yet, but I'll keep you posted. Nobody knows why I'm affected, or why I've been so sick. (I did a stint in the hospital in May for a brain infection.) I don't want to be blind, and I can't afford to be so sick. Have any of you heard anything like this? For this type of presentation, if I had histo, it would have had to have been disseminated histo, so it would be serious and life-threatening. I'm hoping someone will have had the same experience because I've researched for so many hours and can find nothing.

I've had problems with my eyes since round 1990, but never diagnosed with ocular histoplasmosis until 2004. I received the first of a series of injection. Everything went fine with no bad effects, and after six weeks, I saw the doctor agian and it was determined that I'd need two more shots to clear it up and then probably every 2 or 3 years I'd get another series. But the 2nd shot gave e a bad reaction, so my treatment was cut off. Even though I never got that 3rd shot, my blind spots almost went away, but straight lines still retained their wavy jaggedness, and my depth perception stay skewed.

I kept checking my eyes with the Amsler test and I noticed a gradual increase in the blindspots in my left eye, and now the right eyes was having problems. I kept thinking I'd go see a doctor, but put it off, and during this time, and due to other factors, I gave up first gluten and then rice about a month later. About 2 or 3 weeks after removing the rice, the blind spots kept diminishing, until they are usually gone most days until late at night when tired. I still have trouble with lines, but I was able to start driving again, even at night. Not sure what was going on, I go to a completely different doctor, and he says I have some kind of macular but not histoplasmosis.

I don't know what to think, but I wonder if between the injection I received and severe dietary changes that the macular is looking completely different. I still have line problems, and with stress comes floaters and even ocular migraines. But just today, after a lot of online reading I've got some severely large blindspots.

I'm 34 years old and live in Indiana. My vision first blurred in 2008. Thats when I was told I have ocular histoplasmosis. My vision has blurred 5 different times. Twice in the right eye and three in the left. So far I've had 13 shots of avastin and laser surgery to correct my vision. It can be a lot to deal with.

I was diagnosed at Indiana Univ Med Center with OHS at age 18 in 1966. At that time I had headaches, blurred vision in my left eye, and floaters. I was immediately hospitalized and given daily injections of cortisone into left eye and placed on a very high dosage of oral Prednisone. Remember, they didn't have the laser perfected at that time. After release, I continued to have bi-weekly injections at the univ med center (student at IU) for the next 9 months. I, ultimately, lost the central vision in my left eye.

A few years later, while getting an x-ray for what the doctor thought was pneumonia, it was discovered I had nodal damage to both lungs.I was never treated for lung issues. I never realized I had any until that x-ray even though climbing stairs and hills usually made me a bit breathless.

THE IMPORTANT PART - ARTHRITIS

Now at age 65 I have developed a severe case of finger, knee, ankle, and toe arthritis. I live in AZ now and my doctor here while diagnosing suggested I might have contracted Valley fever ( a similar fungal reaction to desert spores) and it might have contributed to my joint pain. He is a renowned internist at MAYO Clinic and has specifically studied VALLEY FEVER and connected complications. He was so surprised to learn about my OHS/ the Midwest version of Ohio Valley Fever. He asked me to allow him time to research a connection between OHS patients and later arthritis.

Turns out a high percentage of OHS patients develop severe arthritis later. Most often in the hands. They are only now connecting the dots of both ailments. Usually people just figure the arthritis is a result of old age and don't even mention to their docs about them having Histoplasmosis. IF YOU DISCOVER ANY JOINT PAIN, BE SURE TO SHARE YOUR OHS WITH YOUR DOCTOR.

Even though I can't see in my left eye, have trouble on dusty days breathing, and have difficulty holding the reins, I am a very active senior citizen. I worked for over 30 years as a teacher/ school administrator. I love to play golf (have to have a long face forward putter because trying to put from my left is not worth diddly) and ride my horse at least a mile across the desert every day.

OHS can only limit you if you let it. Be sure to find the right doctors who know and understand the disease.