Ocular Histoplasmosis Syndrome: The Science Versus the Experience
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
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.
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
OHS
I am a 43 year old father. I hurt my left eye at work pretty badly, and thank God that the opthamologist thinks it's temporary but this forced me to take notice of a slight distortion in the vision of my other eye just into my central vision. they found a small spot that looks like OHS and now want to treat with Avastan, after ruling out one other condition,not treatable but also not as serious. My family and I depend on my vision as I am a tool and die maker by trade. Because of a decreased demand for anything manufacturing, I've Been forced to fall back upon related skills in the shipbord repair industry where good vision is a requirement for credentialing and employment. It sounds like there is hope in the treatment with Avistan and hope that I caught this in time before more vision loss has occured.
Sudden loss of vision
I experienced a sudden loss of vision with 4 small and one large blind spot, pulsating vision (which actually preceded this event by about a month, but I wrongly attributed to migraines) and straight lines appearing curved, in January of 2009. My vision was very blurred, and when I looked at someone's face, there was a black hole in place of their mouth. It was very disconcerting to say the least. I was fortunate to get an immediate appointment with my eye practioner, who after taking pictures, identified the inflamed lesions on my left retina. He immediately referred my to a retina specialist, whom I saw the next day. After reviewing the pictures, and taking additional pictures, he diagnosed POHS. From January through July, I had one injection of steroids, one laser treatment, then four injections of Avastin atfive week intervals. I saw no improvement until the third injection, then dramatic improvement with the fourth. My vision has now nearly returned to levels prior to this occurrence. I understand that I may have a recurrence at any time, in either eye, so monitor my vision regularly with the Amsler Grid.
This is a very frightening disease as it is very difficult to get answers as to prognosis, simply because the doctors don't know why anyone gets it, or how they will respond to treatment. I was fortunate to, by chance only, get with an excellent, highly experienced in this disease physician, and even so during the months I was seeing no improvement, he could offer no guarantees, or even any assurance that eventually it would work. He just did not know.
My advice to anyone suffering from this: Do your research and make sure you are getting the most recent treatment as research continues and new developments happen. Make sure you have a doctor experienced and competent in treating POHS. And above all: stay positive, stay with your treatment, and be persistent. It is your vision, and once it is lost, there is no getting it back.
Scared!!! OHS......what a devestating thing
I started this journey several months ago. I got to the point that I couldn't drive at night....thought I had night blindness. The headlights of the cars completely blinded me. Then it started to affect my day driving as well. But this time it was the sunlight and the reflection off of the cars. I could no longer tell how close or far things were. I quit driving and two weeks later went to see my eye doctor. Thinking I needed glasses due to my age of 50. How sad is that? She dialated my eyes and did some vision stuff, afterwards she told me she thought I had histoplasmosis. I told her I was diagnosed with that in my lungs in my early 20's. How could that have damaged my eyes 30 years later? I was referred to a retina specialist and after some testing, he told me that I have it in both eyes. I thought my left eye was the worst, but he says the right eye is. I have very large membranes and some bleeding in both. The right eye has the larger membrane, but has not bled as much as the left. I have received one injection of Avatin in each eye so far. In two weeks I go to be checke and more injections. My insurance does not pay for the injections becase they are experimental. He told me that I would have to have 3 to 6 injections in each eye and that there are no guarantees. I work on a computer all day and it is getting really hard to read. I have a magnifying screen on my computer and I have strong reading glasses, but the frustration of it is horrific. I squint my left eye to read better and that causes me to get headaches all the time. The retina specialist told me that he cannot do the laser surgery because it would take me vision totally. The membranes are covering my central vision? He also told me that it is very rare to have it in both eyes at once. He calls it bi-lateral ocular histoplasmosis sysndrome. I am so scared. What if these injections don't work? Are there any other treatments out there? I have been looking into disability, but that is scarey also. I have become very depressed and it is hard to wake up every morning. Does anyone have any advise?
Histoplasmosis, ocular
I just wanted to tell my story to everyone. In 1988, at the young age of 22, I started to have problems with my vision. It started in my left eye. I had a small blurred spot near my central vision. When I finally got to my family doctor, he recomended me to another opthomologist locally. H e examined me and said it was histoplasmosis and said he couldnt treat me. He sent me to an out of town retinal specialist. He informed me that I had a detached retina and leakage and I needed surgery right away. It took a total of 6 laser surgeriesand a year and a half to get it to quiet down. In the meantime I had histo spots in bothe eyes, but my right eye wasnt leaking. During this time I was a Mother to 2 small kids, trying to take care of them alone. Fastforward 13 years later and I woke up one morning and looked at my celling and low and behold there was another histo spot, this time in the right eye. I was devistated. I made my appointment with ny eye Doc, and he cofirmed that it was active and it was near my central vision. He recomended several things, such asvisudyn therapy, kenelloge injection, laser therapy. Nothing worked. The only thing that was left for me was to have a vectrectomy. A surgery where they physically go into the eye a remove the leaking membrane. It was evasive. Did it work, yes it did. What I am trying to say is dont give up, theres no reason to give up. It looks like it will never end but it will. The doctors have told me that STRESS plays a very big factor in the resurgence of histoplasmosis. I still drive, even though I have very little central vision left and I have applied for diability and have been turned down, They told me I didnt have enough of a disability. LOL. Find you a Low vision specialist and work with them. They can help you and dont settle for I cnat do anything to help you, keep looking. You will find hekp. Get some Low vision equipment and learn how to use it.
POHS
I'm 37 years old and just found out I have POHS. My right eye has histo spots that are harmless but need to be watched, but my left eye has a large membrane right next to my macula. I don't have a blind spot, but I have distorted vision. The retina specialist I went to gave me an injection of Avastin, but he doesn't know if it will work. We'll have to wait a few weeks to see, and I may need more injections. It's not covered by my insurance, so I'm definitely worried about the cost of treatment - and if it will even work. I didn't realize until today that my vision may never return. I'm definitely scared!
Avastin Treatment
I am 26 and I lost complete central vision in my left I 6 months ago due to ocular histoplasmosis or POHS. I have had 3 Avastin injections which dramatically improved my central vision. I still have a small scar which distorts my vision, but I only notice it if my good eye is covered. The Avastin treatment is not covered by insurance, but cost me around 200 per injection. I no longer need the injections, and will be getting check ups once every 3 months. I had my eyes checked last month and my vision is 20/20 with the same strength lenses I had before POHS. There is hope! I strongly recommend you stick with the Avastin treatments. Good luck!
That is great news! I was
That is great news! I was diagnosed with OHS 2 months ago. It's so strange, and sometimes I get a laugh out of how weird things look! Oh, I try to keep my sense of humor about it, that's how I get through things. Anyway, I go in for my first Avastin injection on Friday, and I'm kinda nervous about it. Now at least I have hope that it could make things better. I only expected it to keep things from getting any worse.
I meant *my left eye,, not
I meant *my left eye,, not I. :P
My Eyes
I am 34 years old, and I have lived with this since I was 19. I see better than I should, and I am thankful for that. 20/400 in my left eye, and 20/80 in my right. I am very active, I work, have a family to look after and I am afraid that as I get older, my vision will completely fail. I said I am 34 years old and I wear tri-focals. And as I sit here and type this, I feel as if I could break down. I am scared. This is not something that I think of often. It kinda just stuck there in the back of my mind, the what if.. I know this may sound stupid, and maybe I am for even writing this. However, this disease..fungus..whatever it might be took my 20/20 vision and changed my life forever.
I read your eye concerns,
I read your eye concerns, and being 57,I to have it in my left eye now. I had it in the Rt. eye in the early 90's,had all the regular laser surgery times 2.I did not know much of the disease,thought that once I had it in this eye,I was good to go. I thought wrong, I now have it in my Lt. eye,10 times worse than the RT. eye. I had to retire early due to my job,and driving,and at present I need to have another laser surgery,sad to say I cannot even go the doctor if I have a cold, much less this eye surgery again. I to know where you are coming from,just losing my husband to cancer, and now this,WOW what a hard ride, but with GOD,and his strength I am O.K.,knowing all the other people who are terminally ill,or little children,I am bless beyond words. God Bless you, in your process,and my prayers will go up for you. GOd Bless
I woke up one morning and
I woke up one morning and could not see out of my left eye. I went to several ophthalmologisits. I was diagnosed with Uveitis. I was given predforte drops and was asked to pour them into my eyes. After the first bout of Uveitis my doctor gave me the news that my eyes were riddled with holes. They told me there was nothing they could do for me! I kept going from doctor to doctor searching for answers. I finally found a doctor who thinks I may have OHS. The holes in my eyes are punctuated and referred as histo-spots.I'm really scared because it would make complete sense because my husband and I own a pest control company and I have been exposed to alot of bat and pigeon droppings... I really need some information on OHS. Is there a test to test for histoplasmosis antibodies?
yes, there is a test for
yes, there is a test for histo antibodies, but it is practically useless, due to the fact that up to 60% of the population in the Midwest would test positive. Needless to say, 60% of the population does not exhibit symptoms or there would be more research being done!
i have had OHS for over 30 years with recurrent bouts of varying degrees of vision loss. after several (sometimes painful) treatments, i was told there was no hope.
i'm sorry i can't offer you a cure, or even much of a positive outcome, but i will tell you that the symptomes of a flare-up (blurred vision, loss of visual field) subside somewhat after each flare up.
God bless...and take care
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