Ocular Histoplasmosis Syndrome: The Science Versus the Experience

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Biology 103
2002 First Paper
On Serendip

Ocular Histoplasmosis Syndrome: The Science Versus the Experience

MaryBeth Curtiss

Ocular Histoplasmosis Syndrome is a growth in abnormal blood cells under the retina induced by exposure to a particular kind of histo fungus. Though the manifestation of this syndrome in the eyes is rare, a significant portion of the population has been exposed to this fungus. As the syndrome develops, the part of the retina responsible for close, sharp vision deteriorates and eventually, without treatment this can become complete blindness aside from peripheral vision.

It is extremely rare that the histo fungus affects the eyes. It is most common that the fungus manifests itself in the lungs, thus creating a lung infection that appears like tuberculosis (3). This infection, unlike the ocular infection, is easily treatable with an anti-fungal prescribed medication. Though fungal infections from Histoplasma capsulatum are more unusual in the eyes than the lungs, OHS is the most common cause of blindness in adults aged 20 to 40 (5). On the contrary, when the fungus reaches the eyes, the damage is irreversible and often difficult to detect and diagnose.

This progression, however, is not readily detectible in a routine eye check-up and requires a specific test involving close examination and pupil dilation. The examiner can, however, detect damage to the macula, or the central part of the retina, by presenting the patient with an "Amsler grid" and judging how the patient sees it and if the patient's vision has been affected (2). The examiner may also notice tiny histo spots or swelling of the retina(1). Once the disease has begun to develop, it is only treatable through surgical means, more specifically, laser photocoagulation of the retina cells (2). This recoagulation process only prevents future vision loss and does not correct what has already been lost. This surgery s also only effective if the eye's fovea has not been damaged and only if the surgeon is able to eliminate all destructive cells in the retina (2).

Such was the progression of the disease in my uncle's eyes about ten years ago. His histoplasmosis went undetected and eventually grew into partial blindness. However, my uncle's experience defied the typical progression in some ways. Firstly, the destructive cells were never detected, though he regularly visited an eye doctor. The deterioration continued until it again defied the typified OHS case, and he became completely blind in his right eye. Generally, the histo cells only affect the center of the retina, the macula (1). In addition, the laser photocoagulation surgery did not stop the progression of blindness, but delayed it. Like common cases of ocular histoplasmosis, he did retain peripheral vision in his left eye. My uncle, however also defied the odds of OHS sufferers, and, though he had some of the most extensive progression of the infection, continued to live his life the way he always had. He became an active, and often victorious member of our local Blind Golfers Association and continued to play basketball, watch sports, read as best he could, and compete in his gym's activities.

Doctors later speculated that the histo fungus could have been picked up in any of Bud's travels, through the "Histo Belt" through the central United States, or many years earlier in his travels to China and Japan. Though his travels in Asia were many years earlier, some of the doctors have suggested that the fungal cells could have remained dormant through the years until they surfaced in the early 90s. This incubation period is much different from that of the lung affliction, as this infection's symptoms appear within two weeks (4). Research and information is constantly changing concerning our understanding of histoplasmosis, when my uncle was first diagnosed, much of the information he was given was speculative and the surgery he received was still experimental.

Researching histo fungus, histoplasmosis, and ocular histoplasmosis syndrome raised more questions than provided answers. Why the difference in symptoms? Why the difference in time for symptoms? Why the eyes and lungs? Why are the lungs easily treatable and the eyes so difficult? One thing we may conclude, however is that everyone should be tested for this infection, as it is the most common cause of blindness for young and middle-aged adults and incurable, but easily delayed.

 

References

1) Ocular Histoplasmosis Syndrome, Useful for a general overview

2) Effectiveness of Laser Surgery, Procedure and statistics

3) Frequently Asked Questions, Information on the lung infection

4) Frequently Asked Questions, More general iformation

5) Histoplasmosis, Some new information

 

 

Comments made prior to 2007

The only treatment that has been able to arrest the scarring in my eyes is to take predisone tablets up to 50mg the first three days and then taper off. I had one retinal specialist advice me to not take this medication when I could see changes but he could not see the reactivity. I didn't use the medicene for a month and suffered more distruction of my macula and bindness around my left eye's blind spot. Finally I just started taking the medicene a former doctor had given me and immediately started seeing improvement. I have had about six reoccurances since 1968. I am 57. Even though prenisone is a potentially dangerous drug, I have to take it when the histo reactivates. It reactivates when I get really stressed. I continue daily to work on destressing my life. Most of the damage is in my left eye, but I have two small spots in my right eye. My right blind spot has some damage around it, but not as bad as the left eye. My blind spot in my left eye is as large as one-third of this paper. Maybe this info will be helpful to someone ... Loretta Taylor, 17 April 2006

Comments

Tia's picture

Any other rare ones out there?

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.

OHS Sufferer's picture

similar experience

I have also been diagnosed with ocular histoplasmosis. I am 31 and just starting my career as an engineer. Almost everything you said sounds familiar except the doctors have not yet checked to see if it has spread to my other organs. So far it is just in my eyes...so that is what the doctors are treating with eye injections. I can deal with the partial blindness. What I cannot deal with is not knowing exactly what is wrong with me. I am sick all the time. My white blood cell count is always elevated. Tomorrow I will be getting a final blood test from my family doctor. If my white blood cell count is still elevated she is going to refer me to the infectious disease experts. Since June I have generally felt sick, off and on. I have had an ear infection (never had one in my life), my good eye has been infected, I had an insect bite swell up to the size of a softball on my leg, etc. This is terrifying. I have never taken so many antibiotics in my entire life. I am also worried that I might have the severe disseminated histoplasmosis. It sounds like you have the same thing as me. I have not had the test to confirm it. So far, it has only been confirmed that it is in my eyes. I just wanted to respond to your comments. I understand. I am going through the same thing. It is absolutely terrifying. What makes it worse is the doctors do not seem as concerned about it as I am, not even close. I have never been this sick in my entire life. I told my retinal specialist about my sickness and he said he has never heard of that in the ten years he has been giving eye injections. I find that hard to believe. I will be joining you in the search for truth and support. It is horrible to lose part of our vision; but, it is a completely different issue to possibly die from this.

patobrocks's picture

Histo and Grains

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.

Maria's picture

Would love more info

Hello all,

I have not been diagnosed with OHS, but reading about it i believe that this is what I could have. The first episode happened in 2005 and I had one in 2008 and 2009, with Avastin injections, with helped tremendously. I had another "little" episode when i did not have the bleeding and it did go away by itself.
I have been going to the Bascom Palmer where I had the avastin injections and they have not been able to diagnose me. Can anyone help me by telling me how is this diagnosed? and anyone else that couldnt be diagnosed for such a long time?
I am currently going through another episode, and I am going on Monday for an appointment. I will take all of this information to my doctor and see what he thinks. I would so much appreciate all of the help and information, it is a total breakthrough for me knowing that there are so many people out there going through the same!!! please email me at mfran999 at Gmail

Thank you so much!!!!!

Serendip Visitor Kendra gidley 's picture

One day I couldn't see our of

One day I couldn't see our of half my eye, I went to an eye dr and she said maybe stress or high blood pressure, I had scars yet no big deal. A week later went to my family dr for a check up and he said something isn't right, he wanted an MRI to see if I had a stroke but due to no insurance he sent me to a retina specialist. He looked at my eye I had a bleed and immediately had said I have histo.

Kendra Gidley's picture

Ocular Histoplasmosis

I am 26 years old. One day after work I was on the computer and my right eye all of a sudden got blurry. I called a local eye Dr and was seen the next day. She said I had histo spots, but once you have them they usually don't get worse. I started a new ant anxiety medication and she said the blurriness could be from that or from high blood pressure. The following week I went to my family DR for a check up. I told him about my eye and he sort of flipped out. He said I needed an MRI, I told him I didn't have insurance. So he said he would send me to a retina specialist. I went and I had hemoraging in my right eye. I was then diagnosed with Ocular Histoplasmosis. I was given a shot of avastin. Boy was I terrified. At my 6 week check up, I regained my vision back form the bleed. I have yet had a leak and it has been a year. I am still scared daily because of this. My RS told me I was the youngest person he has seen with this. I can see 3 small blurrs in my right eye and my whole left perifial of my left eye is at a blur. Yet I can only tell when I am tired or looking at alot of straight lines for awhile. I have a 3 year old and I am in school for nursing. I get so depressed when I think about this and how one day I could be "blind". My great grandma had it as well as my great uncle. My great uncle has been stable for I believe 15 years. I am on a support group on Facebook that helps out alot. I pray for everyone who has this horrible disease!

Panda's picture

Ocular histoplasmosis

Send me how to join your support group I also have this depressing (eye) disease thank you :)

Serendip Visitor : Lee Kieke's picture

Histo

This disease does not get easier and is very scary. I too was fairly young compared when I was told I have Histo. I got my first shot on my 35th birthday by Dr. David Brown in Houston. I have been fighting this now going on 6 years. They first treated my right eye, then found it in my left eye. I cry and stress out really bad about it also. I went almost a year since my last injection of Lucentis. My right eye is bad, and now I'm scared it is going blind in the center. I fell out of my house yesterday by miss stepping, luckily I tucked and rolled, so I was ok. Things happen like that to me when my vision gets really whacky. Be careful when driving, cutting, and walking. Enjoy every moment you can with your sight because you do not know when it will fade from day to day. Contact me any time you want about histo and I can inform you about what I've been through. Best wishes, take care!

Sri's picture

ocular histoplosmosis

I am diagnosed with ocular histoplosmosis today I am 36 years old. My dr said he cannot treat right now , i have histo spots in my left eye. My DR Asked me to visit in a month. When I look at the amsler grid with my left eye i see wavy lines. My Dr said he cannot treat the histo spots I already have. Until my next dr appointment what I should I look for? At what stage they give Lucentis. I am scared what if I get in my right eye and then everything will be wavy. Can you please give me more information what to watch out for . I am scared , I have 2 little ones to raise and no one( family member) can raise my kids. I am afraid I go blind. Thankyou Sri.

Lisa Healan's picture

Ocular Histoplasmosis

I was diagnosed 9 months ago. I am new to Facebook, but a member, could you please tell me more about this support group on Facebook?

Serendip Visitor's picture

How long did it take for you

How long did it take for you to start seeing a difference after the avasitin shot? I was diagnosed Monday, shot on Tuesday. The pressure in my eye feelsuch better but unfortunately I haven't been able to see a difference in my sight. This is so depressing!

Brian Lewis's picture

I have been suffering joint

I have been suffering joint pain and I recently tried a light therapy device called tendlite, it really works like a charm and reduced my joint pain significantly. Give it a try here's the website http://www.tendlite.com/

Anne Gaidoo's picture

ocular histoplasmosis

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.

Serendip Visitor's picture

POHS

I was diagnosed with POHS 5 years ago but had my first attack 10 years ago. I woke up one morning and could not see out of my left eye. For five years I went from doctor to doctor including Dr. Foster who misdiagnosed me! He charged my insurance company over $20,000 dollars for a "5" minute exam, blood work up and an MRI.
I finally found a doctor who "immediately" saw the signature "round" lesions that led him to the POHS. I grew up on a dairy farm in upstate New York and my job was to "maintain and clean" the chicken coop. That means the virus remained dormant for over 30 years before attacking my eyes. I would highly suggest doing the steroid drops! Predforte was what saved my vision. Also take mega doses of ocular vitamins and ask for a muscle relaxant. Relaxing the body as a whole is the best way to counteract anymore damage. Don't do any up and down activities, exercises etc until the inflammation has calmed down. I haven't had a flare in 10 years. As soon as I become stressed or have inflammation anywhere in my body my eyes become indicators. Which means I experience flashing lights and an increase of floaters. I immediately take ocular vitamins and find ways to decrease the inflammation and stress. Also, always wear sunglasses even when the sun isn't out. My eyes have been damaged but the damage is "old" and doesn't affect my vision because the spots are located in the white part of the eye. Good luck...

T. Johnson's picture

Living in fear

I apparently started showing symptoms right after my 21 year old daughter was born in 1990. Went to several doctors and retinal specialists who told me it was stress. About ten years later on the way home one night all of a sudden i couldn't see out of either eye. I say it looks like a kids kaleidescope. It passed after a few minutes. It happened again about a month later this time i was rushed to the emergency room. They contributed it to migraines. Then in 2005 i was back in college and kept noticing flashes of light and more curves in my vision. I went to a local eye surgeon who was recommended. He at that time told me i have OHS. He didn't say anything about treatment except if it got worse to come and see him. So, here it is 2012 and i was ill for about three weeks with a sinus infection. As soon as I finished my antibiotics I noticed my left eye has a smudged look and lines are more curvy than ususal. I immediately went to my eye doctor. He has me scheduled to see a Retinal specialist in two days. Last night i had one of my blinding episodes which i have not had in a very long time. Reading everything i can, i am becoming very scared. I am in the process of leaving my partner and trying to give myself a better life and THIS HAPPENS. I am also very angry that it was not diagnosed sooner and that no one has even tried steriods!!!

Sri's picture

POHS

Hi Mr. Johson, I am sri , living in jacksonville Fl. I am diagnosed with POHS a week ago , at my regular annual optometrist visit , when they were taking pictures of my eye , they asked me to look at the star in the machine , i noticed with my left eye, it looked wavy and asked my optometrist she said i have scar in my left eye , and not to worry about it. she asked me to look at amlser grid everyday and call if it gets worse. I was worried , as i have very high myopia and made an appointment with retina specialist. He diagnosed with POHS and said he cannot treat me now as i he doesn't see anything active .

My right eye was good but since 3 to 4 days i sarted to see a little wavy when i look at amsler grid. I am worried if it gets worse everything i see will be wavy as my left eye already have scars and wont be able to do daily activities. Can you tell me if you know how long I should wait to get treatment , until my vision gets blurry? When I call my Dr , he says when my vision gets blurry to call them, If they treat me at that point , after treatment will i be able to see everything straight. I am sorry I know your are not a doctor, but from your experience if you know anything can you please share. Thankyou and GOODLUCK. Sri

Lisa Healan's picture

ocular histoplasmosis

I am just now today learning about the steroids. I was diagnosed 9 months ago. My last shot of Avastain did not work, it made it worse. My eye doctor has never even said anything about steroids or high stress factors. Thank you for your story. I think I might change doctors for sure.

Bets Barrett's picture

65 years - later arthritis complication

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.

Serendip VisitorTheresa's picture

POHS

I invite you all to join the Facebook page for POHS. This is the link
I have been told i have histo, PIC,MFC and now back to it being histo. I find this all fustrating and confusing, and it seems no one really has the answers. I have had nine injections of avastin ( and by the way the injections don't hurt, yet the sterilizing of the eye right before cause me alot of discomfort)

Margie's picture

fb link

Could you please email the fb link to me also? Thank you, Margie

Ben's picture

I need the Facebook link too!!

I couldnt see where you posted the link, would it be possible for you to email it to me?

Maria's picture

Link

Hi, I couldn't see the link to Facebook, could you please send it to me? Or email me at mfran999 at
Gmail
Thank you!!!

Serendip Visitor's picture

Newly diagnosed at 33

Hi, I'm a 33 yr old female with POHS, reading all I can about this condition. I have always been severely nearsighted (glasses when I was 3 yrs old, contacts since age 8) and so I've always been vigilant about changes in my vision. I always have my eyes dilated at least once a year to check my retinas (at higher risk for detachment or tearing since I'm so myopic, my glasses prescription is -16). So, it was at least 10 years ago an optometrist first commented she could see a lot of histo spots, but they were all old and scarred over, and nowhere near the center so had no impact on my vision. I've lived in several "histo belt" states, so this wasn't that remarkable, just interesting trivia at the time.

However, a couple of weeks ago one morning I noticed a spot in my right eye, similar to the afterimage from a camera flash. By the end of the day I could see three little spots, all very close to my central vision. For instance, when reading, I notice a blank spot on the line immediately below the one I'm reading. On an Amsler grid there are three dark swirly spots closely surrounding the center dot.

I saw my optometrist the very next day, and she immediately referred me to a retina specialist. I was still assuming this was related to my poor vision, so was really surprised when it turned out to be a histo flare up. I had the dye injected to check for bleeding or fluid and luckily there is none so far, just the inflammation, causing that distortion. We tried a one week course of oral prednisone first, which had no effect on my vision, and just caused annoying side effects (hot flashes, joint pain, trouble sleeping).

When I went back one week later he repeated all the tests, and then recommended an injection of a steroid. I had read about Avastin injection, so was at least prepared for the idea, but this was a corticosteroid instead. And although it wasn't overly painful, it was certainly uncomfortable and upsetting. (I'll admit it, I cried afterward.) The weirdest part has been that the steroid was an opaque fluid, and a week later it has still not completely dissolved into the vitreous. So I can SEE the medicine swirling around because it is casting a shadow. I think it's finally starting to settle down now, but I'm still a bit annoyed he didn't warn me about this before the injection when going through the other possible side effects. A huge swirly black cloud in your eye is a pretty significant detail!

Unfortunately, no improvement of the spots so far. I'm scheduled to go back to the RS in about a week, and I'm not sure what next steps will be if there is no improvement. Right now it's a minor annoyance, but I could certainly still function perfectly fine if this is as bad as it ever gets. But the RS seems very concerned about how close it is to my central vision and the possibility of it spreading and causing permanent damage. Unfortunately it seems like there's no way to know what's most likely to happen. The uncertainty is very stressful, and of course I keep reading I should try to reduce stress. Easier said than done!!

Serendip Visitor's picture

I am so glad to know what the

I am so glad to know what the black swirly things were in my eye after the injections. I had no Idea what was going on. I was first diagnosed in December of 2011 and am recently going through a flare up. I guess it being due to stress. Grateful for this website.

M. McJohn's picture

Avastin vs. Corticosteriods Question

Hi. I have had POHS in both eyes for about 18 years (including a period of over 5 years with no reoccurances). When laser surgery did not stop the progression of the disease my doctors tried Prednisone, an oral corticosteriod, at 60mg with a very slow taper off. I had almost immediate improvement in my vision - I could go from not being able to read back to reading normal print within 3 days - and thankfully very few bodily side-effects. Whenever I had a flare-up I used the Prednisone and had the same results. We recently moved and my new doctor thinks that Prednisone has too many side effects on the rest of the body and does not want to prescibe it for me. She wants me to try Avastin injections. But I have read that there have been several cases of infections caused by improper handling of the drug, I imagine it's a painful procedure and it is much more expensive ($200 for an injection vs. about $8 for the Prednisone). I would like to hear from people who have had Avastin injections about how quickly you had improvements in your vision, how much it improved, and how often you have had to get injections. Did your doctors say you might eventually never need the injections because the Avastin deals with the causes of reoccurance? Thank you very much for your responses.

Serendip Visitor Jackie's picture

I was diagnosed with POHS

I was diagnosed with POHS Oct. 2010 in left eye and Oct. 2011 in right eye. I have had shots all but two months in left eye and they aren't as bad as one would believe. I continue to hope I wont need them but so far my left eye don't corporate. As for my left eye I did two shots then two surgeries and have had three good check ups all 28 days apart and return on this Wednesday to have tests to check both eyes. I do think the shots prevent progression and am very faithful to my appointments. I think most people only need 5 shots a year to keep everything in check and my doctor is great. He says they are developing a new drug that will last longer than 28 days so that also gives me much hope. Hang in there as there is hope.

Serendip Visitor's picture

Avastin

I was diagnosed With Ocular Histoplasmosis in 1998. While I have spots in both eyes, only in my left are they right inthe center of vision and that's where I had the first falre-up in 1998. My vision went donw to 20/40 in the left eye and we decided not to laser and wait. After to years, the leakage dried up. Everything was fine until another decline in vision to 20/40 in 2008. No treatment was possible since this time it was not a leakage, but one of the spots grew. It then started leaking the following year and I received 3 Avastin shots spaced 4-6 weeks apart. My vision was back to normal after 2 shots already. My Dr. says that it is unpredictable if and when I will have another flare-up. The shots themselves do not hurt because of the numbing drops, but your eye may feel irritated for a few hours afterwards. My insurance first refused to cover the shots, but then relented after my Dr. gave them a couple of phone calls. My Dr is an expert in the field and says the shots are now the best option. He never mentioned oral steroids as an alternative, but I'll ask him at my next visit. Good luck!

Plugging along's picture

There's a reason

Some of the doctors are seriously reconsidering giving steroids for this condition. It may slow your loss of vision, but only for a few years. Steroids in high dosages have serious side effects. I'm disabled not because of the loss of vision from this disease, but because of brain injury likely caused by the steroids to treat the disease. Had the doctor been honest with me and told me what extended use of higher dosages could do, I wouldn't have taken them in the first place.

Peggy Purvis's picture

Avastin

Hey, My story is alot like yours. I have had POHS since I was 27 and I am 55 now. Many years with no reoccurances. In 1999 it started to get bad and Prednisone 60mg over 5days worked. And many times after that it worked. One time in 2003 it didn't and in my left eye I had leser surgery which did not work either. I lost much vision in that eye 20/200. Than in 2010 my right eye started to act up. Well my Dr. said Avastin would work better than prednisone and be better for me because the side effects over the years has hurt my kidneys. Avastin worked great in three days and no weight gain or pain in the area of my kidneys. Yes it is expensive but my Dr. hope it does help with reoccurance. Oh by the way it's not painful it they use the numbing gel. My dog died last week (big stress for me and I had a flair up and had a shot on Friday. It's Saunday and almost back to normal. Write me and tell me what you decided and how it worked. Good luck. Peggy

robin's picture

histoplasmosis

Hello~ I am 47 years old and about a year and ahalf ago I went from haveing 20/20 vision to practically overnight 20/400 in left eye. I was first diagnosed with wet macular degeneration, which they found peculiar at my age. I started receiving avastin injections right away, as I could look at you with left eye only and not see much of your face. Was petrified to say the least. I now have tri-fold glasses but the left eye has no perscription as that does not help vision in that eye. I went to Cleveland Clinic and he was stumped but did give me steroid shots in head for head pain. Finally after going to doctor in Columbus ohio, I was diagnosed with ocular histoplasmosis. The fluid continues to build in left eye, I have had 9 injections so far and luckily the histo spots in my right eye are not active. I hate the thought of this going on the rest of my life but do realize that it could be worse. we take our health for granted and only learn that after being afflicted with disease. God Bless and good luck to everyone!

Serendip Visitor ketti's picture

avastin vrs. laser

I too am in columbus ohio I got diagnosed with ohs in nov 2010 I was 45 and have been getting avasin shots every four weeks. Every time we have tried to extend the time between shots the eye fills with blood. Even 1 week over and my sight goes away. I just don't see an end to these shots and don't know how much more I can take. Would you be willing to tell me who your dr. Was in columbus

Serendip Visitor Robin's picture

Columbus Dr.

Hello~ Yes my doctor in Columbus was Dr. Opremcak. pronounced opremchek. The doctor that does my Avastin injections is in Dayotn Ohio. I am getting ready for my 15 th shot . I went 6 months without injections since the fluid stopped but then it started back. I am amazed that there are so many with Ocular Histoplasmosis. I never heard of it until I was inflicted. Hope you are doing well.

Serendip Visitor Jules's picture

Columbus Ohio doctor

Hi. I was diagnosed eight days ago with OHS. The vision in my right eye became extremely distorted and when the large black spot appeared, I made a very quick trip to my optometrist. He sent me immediately to Dr. chorich at Midwest Retina in Dublin. I've had one Evastin injection and laser treatment already. There has been some improvement but I know it's still early. Anyway, he came highly recommended by my optometrist and I have been very impressed with him and his staff. Perhaps he can assist you. Best wishes!

Serendip Visitor's picture

POHS

A retinal specialist is the best person to help you. I went to several doctors before I had one prescribe ocular vitamins. Which seemed to help. Take them at night and give them a few weeks to work.There is hope I had lasix surgery "before" I was diagnosed with POHS in 2007. It was very scary in the beginning but I persevered and went to many doctors including an internist who found the hypertension was also worsening my condition. Whenever my pressure is high my eyes become light sensitive and inflamed. it's an autoimmune response. Also have a C~reactive antibody test to see if any other inflammation going on in the body. The best way to deal with POHS is make sure you're not exposing yourself to any environmental air borne mice, rat, bat and chicken guano. Stay healthy...

Jeff's picture

OHS and Steroid Therapy

I was diagnosed with OHS is one eye. I've had searing pain in that eye but steroids seem to alleviate it. Is this pain unusual for OHS infected people?

Serendip Visitor Robin's picture

Hello~ I have had pain since

Hello~ I have had pain since the onset of OHS and my doctor continually told me there is no pain associated with it. I kept insisting that I have eye pain and head pain on same side of head. My neurologist has told me that it makes perfect sense that I have pain because there are nerve endings that would be affected by the the swelling and leaking behind retina. I am sorry for your pain but I must say I am relieved to here that I am not the only one experiencing it, if you can understand what I am saying. Good luck to you, I am thankful for this sight.

Robin's picture

Hello Robin, My name is Robin

Hello Robin, My name is Robin and 6 years ago I was dianosed with histoplasmosis. I went to be with 20/20 vision and woke up with 20/300. I had the injections,and one of the top retina specialist in KY. Now in 2011 today as a matter of fact 11/09/11 I was just told I now have it in my other eye... Im truly devastated... I now live near Toledo OH, and have been referred to a retina specialist here. I can so relate to your fears, and concerns.. I have one lung that has the lower left lobe calcified now.. I want to know why after the diagnosis of histo had been made. Why have I not been treated with a sterioid? Im so scared of what the future has to offer. Im a full time psychology student, and cant imagine throwing it all away.. I wish you the very best.In your treatments the dr told me today it would take nothing short of a miracle for me... Which has left me in a deep state of depression..

Serendip Visitor Robin's picture

Hello Robin! I am so very

Hello Robin! I am so very sorry to hear your news. Yes I have it in both eyes also but only my left is active. I believe the Avastin seems to be the best for many reasons, I am on my way to my 15 th shot. It is scarey and so agravating to struggle with vision.I am so sorry you are going through this and I understand. I am a single mother and I worry that if I can''t work or drive how I will take care of my young one. Hang in there and stay positive, we are all in this together. Lets stick together and support one another.

Janet's picture

OHS

I am 43 years old and was diagnosed 16 years ago with OHS. I have had conventional laser treatments causing permanent blind spots in both eyes. I have also had photodynamic therapy and AVASTIN injections. I have had the most success with the injections. At one point, my insurance refused to pay for the AVASTIN because it hadn't been "approved" for my form of WMD. Apparently, the insurance company thought you couldn't have WMD unless you were a lot older! LOL! Instead, they would pay for the much more expensive PDT treatment. Thankfully, our new insurance will pay for the injections. If they didn't, we would still pay for them. A shot and a little discomfort is much better than being out of "commission" for three days while the photosynthesizing dye works its way out of my system. This is especially true for anyone who still works and has children to take care of.

Noelle's picture

So thankful for my "good eye"

Hello Everyone!
I was reading your posts and got a little bit excited that other people were dealing with this as well. I was 8 years old (1993), born and raised in Arkansas, when I first told my parents that I wasn't able to see very well in my left eye. As best as I can remember, the chalk board writing in my 3rd grade class looked a little blurry. My parents thought I was just telling them that because I wanted glasses like all my friends. My mom finally took me to an ophthalmologist and he said that I had blood/fluid in the back of my eye. Of course, she was shocked. My response: "See, I told you so." He immediately recommended me to a retinal specialist that day. When I went into the office, I was a little confused. There were no other kids like me, it was all "old people that reminded me of my grandparents!" I was given the thermal laser treatment, at that time, to stop the bleeding. My vision prior to the treatment was 20/400. That was the only treatment that was offered at the time, so unfortunately it left a scar in my central vision. My vision did improve to 20/60 after that. I didn't have another problem with it until I was 22 years old (2007). I was given another thermal laser treatment since it was so successful the first time. Three years later, when I turned 25 (2010) I noticed another change and had PDT performed. I like it so much better than the thermal laser because I think it is easier sit through. Unfortunately, I had to be treated almost a year to the date of the first PDT treatment again. I am 26 years old now and still occasionally get frustrated. My vision is 20/15 in my right "good" eye and 20/70 in the left eye. For the past 18 years I have continuously asked the drs, "why did this happen to someone my age?" and "do you have any more patients as young as me coming in here, yet?" I suppose that I was traumatized by the whole experience, often wondering "if something this RARE happened to me, what other RARE things might happen?" I try to stay positive and I'm lucky to have such wonderful doctors who have managed to help preserve the eye sight that I do have. I hope that there might be some advancements in the future that offer a repair to retinal scarring. Fingers crossed! Take care everyone and thanks for reading!

Cherie Anderson's picture

OHS

Was given a possible diagnosis before my trip to Georgia when I was 29. The blood vessels burst on the flight home and I had to have very invasive laser treatment losing my central vision with a nice bowtie scar. I virtually pioneered PDT in Wisconsin. I had to have 5 of them. I was never treated with drugs of any kind. I am 38 and as of last week, I now have a few floaters again and of course an appt with my retinal specialist. Are flare ups something that I have to live with forever?

Serendip Visitor's picture

Implantable Miniature Telescope - is this a possiblity for OH

My husband was diagnosed beginning of this year. I saw a special where they have found a possible 'fix' for Macular Degeneration by putting a Miniature Telescope in the eye to fix the central vision. I wondered why this could not be an option for Ocular Histoplasmosis. (website ) If anyone out there has info on this I would appreciate your thoughts/info. My husband has it in both eyes by working on a farm. He had a severe reaction to the injection in the eye (Avastin) (doctors thought it was gallbladder ). He has had 5 procedures with no improvement and alot of pain in the eye. He seems to have very severe pain if weather has high humidity or precipitation. Has anyone seen these symptoms?

robin's picture

ocular histoplasmosis

Hello, I am 47 years old and have been to numerous doctors. I suddenly lost my central vision in left eye about a year ago. I have received 4 doses of Avastin, they are unsure what my diagnosis is or how this has happened. Ocular Histoplasmosis has been suggested and sounds exactly like what I have. I have experienced eye discomfort from the get go, even before Avastin. They tell me I shouldn't have this "pain" but I tell them I do. After reading about your husband, I am intrigued. They tell me they see changes in my right eye now! This is so scarry. My heart goes out to your husband. Would be interested in the area you live. I am in Ohio.

robin's picture

Hi I was very interested when

Hi I was very interested when I read your story. I too live in Ohio and have had eye pain from the get go. The doctor keeps telling me that I shouldn't have pain, as If I am imagining this. I still to this day have eye pain, a year and a half after onset of histo and 9 injections later! I would be very interested in talking with you. I am 47 years old and live in the dayton area.

Amanda's picture

OHS

I too live in the Dayton OH area and have been diagnosed with OHS a year ago. I am no age 38. I see a Retinal Specialist named Stephen Miller, MD. I have had avastin injections. At first injection it completely took the blur away. Now 9 months later, while going through some very stressful health issues with my husband, I have again had major troubles with my left eye and the injections don't seem to be helping. This is very hard for my as I work on a computer all day and can't hardly function. I suffer from major headaches daily from trying to see. I also noticed that I have NO depth perception. This is totally freaking my out. I feel for all of you dealing with this horrible problem and I hope one day they can find a cure. I don't want to go blind. I also feel now my right eye is starting to be affected.

Serendip Visitor's picture

OHS

Amanda I fully understand your concerns. I am 41 now and was diagnosised 2 1/2 years ago. I have had shots almost every month in my left eye up until this past month, in which, the retina specialist has opted to quit giving me shots as my vision is worst than 20/400. That basically means the shots never worked to stop the Histoplasmosis but maybe prolonged me losing the sight. My right eye also has the disease and it hemorraged 1 1/2 years ago exactly 1 year after my left eye was diagnosised. My retina dr. at that time gave my right eye a shot and scheduled me for laser surgery to stop the hemorrage. The first surgery was unsuccessful so had to have a second surgery two weeks later and lucky for me my right eye has been stable for a year and 5 months now. If you feel your rt eye is giving you issues do not wait to get it checked out. The sooner they find the issue the better chances or fixing it. I to work at a computer and have lots of blurry vision and head aches. I no longer see depth and very causous when driving and walking on stair expecially. I have just requested assistance at work through a program called Stay at Work. I was actually on the phone with a lady when i received the email on your comment. They say there are lots of options for low vision to allow me to work from my computer including programs that turns text into audio words. I will have to be assessed by a low vision specialist but what is that going to hurt. Just stay positive and make sure you trust your retina specialist and report changes in your vision right away. I love my retina specialist as i see Dr. Matthew Thomas with Barnes Retina Institute in St. Louis Mo. However, he protrays to me that life events such as stress dont have an effect on this disease, I am not so sure I believe that. Although I have had continued problems with my left eye since diagnosis I did not lose the vision beyong repair til couple months after I too was dealing with major health issue of my husband and he passed away. Good luck to you!

LMQ's picture

Histoplasmosis

I have also experienced POHS and found myself not being able to see out of my left eye one morning in 2002. My case was even more complex as I had Lasix for nearsightedness and my doctor thought it was the actual surgery that caused the inflammation. I went about 4 years before I received a POHS diagnosis. During that time my eyes were on fire, extremely sensitive to light, massive floaters and flashes of light. My doctor just kept me on ocular vitamins, high fiber diet lots of fruits and vegetables and Predforte drops 3x a day! Eventually the classic round lesions healed and my eyes were saved from any ill effects. I'm still sensitive to light and have lots of floaters but my site is near perfect. I wear sunglasses at all times outdoors even on cloudy days. I also don't do any up and down exercises such as jump rope or jogging. This seems to jostle my eyes(bobble eye) and makes the worse. Also if you're sick or stressed find something ASAP that makes you feel better(massages work great!!) STRESS is the number on reason for POHS flares. I have not had any flares since 2006! I prayed a lot too. I know that helped too...The doctors can see the lesions in both eyes but they are completely healed. Lots of scar tissue and eventually I'll have to have cataract surgery(result of steroid drops). But they slow moving and aren't affecting my site yet... I hope this helps and remember I didn't have Avastin shots nor did I want them! I became my best advocate! Also, I almost forgot the most important advice...Water,water and more water. Carry it with you at all times and drink at all times! Dehydration is the worst enemy to our "living" bodies....

Serendip Visitor joy's picture

oh

I just found your web page, my husband is now close to 60 yr., he was diagnosed with OH in 1978, he lost the central vision in the left eye at that time, he had lazer surgery, non successful, but, at that time, that's all that was available. Now, in April of 2010, he started seeing waves in his good eye, he has lesions in both eyes, but, the right eye is away from the central area. After our regular eye Dr., he got us into a specialist, he saw the problem and said we had 2 choices, either the lazer or the injection, he chose the injections, this looks like it could be an on going, as he keeps getting the fluid back. Have any new procedures came available?

Pam's picture

Ocular Histoplasmosis

I am 49 years old and have lived with Ocular Histoplasmosis for five years. In the five years of being diagnosed I have had around 20 injections, starting with Macugen and now Avastin. I have had 3 PDT treatments also. My left eye seems to always be leaking, resulting in another injection. I have histo spots in my right eye also that are not active at this time and I am very thankful of that. It is hard for me to drive at night also and I rarely do. My depth perception is also off. This is a wicked disease and the only thing now to do is for my Retina Specialist to try to keep it from getting worse. I see him faithfully. My question is, What is the difference between Ocular Histoplasmosis and Macular Degeneration? They seem to have the same symptons and same treatments.

Anonymous's picture

Hi, 43 year old father again.

Hi, 43 year old father again. Well, I had my final test yesterday with a flourescent die injected in my blod they took pictures of my retina. I have three tiny (about 1/32 inch diameter histo spots. One had aparently stoped bleeding and did'nt cause any macular damage some time ago.two that are bleeding now and have caused a distortion in my vision. I was treated with an injection of Avistan and will be rechecked in 4 weeks and possibly get another treatment. My doctor said they have had improvments in vision and bleeding stopped in 90% of patients treated. I still am able to see 20/20 with my glasses, so I would be happy if there is no further damage. He has'nt mentioned any other possible treatment yet. I believe the laser causes permanent damage to the cornea so that's a last resort. I'm praying that this treatment works. And praying for all of you also. I thank God that there is some hope

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