This page is an effort to collect information which may be useful to others with ocular histoplasmosis, or anyone looking for information about the disease.
If you have histo, please Add to this survey we are keeping!
Name:Stacey Wales
Location:Mirtle Beach, SC US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hey there. I research home equity loans regarding mortgage financing headaches. Home equity loans work even if you have a second mortgage or no home equity . You can even do some debt consolidation too.
Date: -
Name:Amy
Location:San Diego, CA US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hello! Amy Catering San Diego California. Thank you for letting me sign your guestbook and thank you for your website. Glad you are here.
Date: -
Name:Beatrice
Location:Cleveland, Ohio US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hi Everybody. Wish I did your graphics. Great work. I found you at a free dating service site for adult personals believe it or not. One of the personal ads at the dating service referred to your site as a favorite. Amazing what you can find doing online dating huh? Email me if you want at beatrice_tran@hotmail.com.
Date: -
Name:jane. Email: <jfwilson@ipa.net>
Location:Batesville,AR, USA
Date of First Histo Occurence:May ,2002
Affected Eyes:Right
Other Stresses at Those Times: Divorce, depression,hypertension
Laser Surgeries:2. Results: Stopped leakage, have lost vision in inner
aspect of eye
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements: Spring Valley eye formula, 2 daily. Notice more blurring when not taking
these vitamins`
Vision Products Used: Already wore prescription bifocal glasses
Additional Comments: I am a licensed practical nurse with lots of reading and charting. Was first treated in June 2002. Have had two laser surgeries and had the dye test 4 times in past 3 months. Another one scheduled for Sept. 27th. I was told I had a 50/50 chance of it coming back in the same eye, and almost no chance of having problems with the left eye.
Date: -
Name:jane. Email: <jfwilson@ipa.net>
Location:Batesville,, USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Sharon. Email: <SBrown35@neo.rr.com>
Location:Malvern, Ohio USA
Date of First Histo Occurence:June/2002
Affected Eyes:Right only (so far)
Other Stresses at Those Times: Over the past year or two have been going through menopause,causing dry eyes...have scratched cornea several times...more stress at work than usual
the past couple years...have had increasing aches and pain in joints as well
as muscles. RA is in my family, but bloodtests for several types of artritis didn't show anything.Could it be related to the Histo in my eyes;I wonder...
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none (so far) - I'm choosing to do "nothing",at this time...there are "good" reports and "bad" reports from various treatments.I will try vitamins first...if this progresses too much,then I will consider additional treatments. Some people seem better off having had no treatments at all. The Dr. said he can make me no promises.
Nutritional Supplements:Was taking vitamins before (multiple,w/extra C,E,B complex & calcium);Now have added on any vitamins that I've read are good for eyes: "Vision Essentials"(combo); Grapeseed ext.; Quercetin/Bioflavoid complex;Co-enzyme Q10; Flaxseed,Primrose,& Fish oil comb.; and just added "Shark cartilage" to that list. (+taking more Vit.C now)
Vision Products Used:Glasses for nearsightedness since age 8.
Additional Comments:I've lived my whole life in the Histo belt...Ky,W.Va,and Ohio. Have no idea WHICH of a MILLION places I could have contracted Histo. I've been around birds,chickens,farms and farm animals all my life! I own chickens even now! I've gardened in (dirt),been around construction sites,been around livestock & poultry auctions,etc.etc....This condition has thrown me for a loop,but thanks to this site,I feel more informed than when I came out of the DR.'s office. I'm dealing with it the best I can,with God's help. So far,I am grateful it has affected only my right eye.After reading some posts from people who have had Histo for years and are now legally blind...it is really scary not knowing what will happen in the future. It has definitely changed my outlook on life a lot; I "look" at life with more appreciation for the blessings God has given me,and I pray each day now for a cure, not just for me,but for everyone posting on this site. May God give us the strength to do the best we can in this.
Date: -
Name:Freelance Writer
Location:Mission Hills, CA US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Very nice site. I think I can spruce up the writing though. I write professionally and web content writing is part of what I do. I also write business letters and comedy . Feel free to visit my website.
Date: -
Name:Search Engine Optimization Placement. Email: <seoplacement@yahoo.com>
Location:LA, CA USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hi!! My name is Victor. I like your website design very much. You have wealth of information on your site. I recently got into learning web site promotion, submission to search engines for free and online internet marketing myself. I am doing research on improving my skills in search engine optimization and placement, keyword marketing research, and pay per click management. I have made small websites where you can buy discount inkjet printer ink cartridges, cheap refill kits, laser toners for HP Epson Canon Lexmark printers and another site that sells free direct tv dish satellite network. I like to play and copy playstation and ps2 games and
copy dvds videos cds divx decss. Don’t forget to visit my site if you ever need to buy discount remanufactured ink jet cartridges, cheap refills and laser toners for HP Epson Canon Lexmark printers . Thanks for your time and keep up the good work.
Nice Site!! Delighted to Visit It!! Great Content!!
Date: -
Name:Search Engine Optimization Placement. Email: <seoplacement@yahoo.com>
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hi!! My name is Victor. I like your website design very much. You have wealth of information on your site. I recently got into learning web site promotion, submission to search engines for free and online internet marketing myself. I am doing research on improving my skills in search engine optimization and placement, keyword marketing research, and pay per click management. I have made small websites where you can buy discount inkjet printer ink cartridges, cheap refill kits, laser toners for HP Epson Canon Lexmark printers and another site that sells free direct tv dish satellite network. I like to play and copy playstation and ps2 games and
copy dvds videos cds divx decss. Don’t forget to visit my site if you ever need to buy discount remanufactured ink jet cartridges, cheap refills and laser toners for HP Epson Canon Lexmark printers . Thanks for your time and keep up the good work.
Nice Site!! Delighted to Visit It!! Great Content!!
Date: -
Name:Cisco
Location:Bogota, Putumayo Colombia
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hello my name is Cisco. English language is my second language . I visit sites like yours to learn new english vocabulary words and improve my english grammar . I hope to have effective communication and business communication for a new job in US. I learned a new word of the day from your site. I plan to be public speaking and business writing better now from your site. Thank you.
Date: -
Name:cheap flights
Location:Chicago, IL US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hi! I was just passing through your site and thought I'd mention that I specialize in cheap international flights. If you international flights with low fares are something you are looking for, email me at cheap_flights@hotmail.com
Date: -
Name:Vicki. Email: <vchristy@softcom.net>
Location:Sacramento, CA USA
Date of First Histo Occurence:8/6/02
Affected Eyes:Right
Other Stresses at Those Times:Two weeks before this flared up I had a hernia surgery...my first time under general anestesia.
Laser Surgeries:2 - one hot, and one PDT. Results:The PDT was just a week ago. I have noticed that the spot in my central vision seems to be smaller. I don't know if it's just the bleeding stopping. I will be rechecked in 6 weeks...we'll see then.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:I have had 3 c-sections, and have had high blood pressure and hypo-throidism for 18 years. I take medications for both.
Nutritional Supplements:no
Vision Products Used:I am extremely near-sighted so I wear contacts, and occasionally glasses
Additional Comments:I am currently very depressed about the permanence of this disease. I have have no idea how I could have ended up with it. We moved around alot as a kid and the closest I was to the histo belt was Minnesota/Wisconsin for a very short period of time. I currently live in CA where this is almost unheard of. Luckily, my retinal doctor trained in St. Louis so he is very familiar with it. I am only 34 with 3 young kids and it's already affecting the central vision of my right eye. AND I found out I have spots in my left eye that they have to continue to monitor. I would appreciate hearing from anyone in CA since there seems to be so little support out here since nobody has even heard of this disease.
Date: -
Name:Mary. Email: <maryalbrecht@wi.rr.com>
Location:Silver Lake,, WI USA
Date of First Histo Occurence:5/02
Affected Eyes:Both
Other Stresses at Those Times:I've had a very stressful past 3 years. I'm an elected local official and it's nothing like I thought it would be. People are cruel for the fun of it. Anyway I'm also going through menopause and had a 1 year problem with Stress Roseacia.
Laser Surgeries:2, 1 in each eye. Results:Small blind spot in lower left quadrant of my right eye - too soon to determine what's going on in left, surgery 3 weeks ago.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:Yes, too many to mention 37 vitamins, supplements and herbs daily for almost 5 years. By the way bilberry was a lie made up by the English to 'cover-up' their discovery and use of Radar. It won't help for vision, but it gives you a fighting chance against vericose veins.
Vision Products Used:contacts, glasses, magnifiers.
Additional Comments:No one can tell me much about this. I've learned more looking at this sight than at the specialits office. I'm so frustrated with "don't know", and yesterday when I asked "am I going to be blind soon" the answer I got was "not necessarity, not completely"
Date: -
Name:Lynn Cleckler. Email: <cleckler1@yahoo.com>
Location:Dallas, Texas USA
Date of First Histo Occurence:1986
Affected Eyes:both
Other Stresses at Those Times:I was diagnosed with Ocular Histoplasmois in 1986 - it had already destroyed the central vision in my left eye at that time. While the right eye was damaged (had holes and scaring) it pretty much lye "dormant" until Sept. 2000 when leakage started. Since that time I have had six PDTs - some lasted as long as 8 months - some less than 4 weeks. It is a hard disease to deal with and you always wonder "why me" - but you can survive and work full time with one eye - I know, I have done so since 1986 and have been a legal secretary since 1983 working with heavilly rvised documents, faxes, and computers daily. Email me if I can help you.
Laser Surgeries:6 PDTs-. Results:Some lasted 6 - 8 months - others 4 weeks or less.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Allergy shots since Jan. 2000.
Nutritional Supplements:Yes, multiple vitamins, green tea, lots of spinach and blueberries.
Vision Products Used:Yes, a fabulous new machine called the Merlin - it has helped me in my work 100%!!
Additional Comments:Feel free to email me - support for each other means a lot! I understand.
Date: -
Name:Mary Kay. Email: <iloveweetabix@yahoo.com>
Location:Milwaukee, WI USA
Date of First Histo Occurence:1997
Affected Eyes:right
Other Stresses at Those Times:1997-lost gall bladder 1 month after (high stress time in my life). 2001 second occurance-depression
Laser Surgeries:1 laser, 2 PDT. Results:legally blind in right eye
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:glasses and contacts
Additional Comments:
Date: -
Name:GLORIA. Email: <GLOAF1@HOTMAIL.COM>
Location: ARKANSAS USA
Date of First Histo Occurence:RIGHT EYE 1991 -LEFT EYE 1999
Affected Eyes:BOTH
Other Stresses at Those Times:JOB RELATED IN 1991. THE OTHERS OCCURRENCES WERE DURING A YEAR OF A COMPLETE UPHEAVAL IN MY LIFE THAT ENDED IN A DIVORCE.
Laser Surgeries:3 PDT LASERS . Results:STOPPED BLEEDING AT THE TIME BUT WOULD START AGAIN. DID NOT IMPROVE MY SIGHT. I HAVE SLOWLY LOST NEARLY ALL VISION IN THE CENTER BUT PERIPHERAL IS GOOD.
Sub Macular Surgeries:N/A. Results:
Other Medical Treatment:WHILE I WAS WAITING FOR PDT TO BE APPROVED FOR HISTO THE DOCTOR PUT ME ON A REGIMEN OF PREDNISONE WHICH SEEMED TO CURTAIL THE BLEEDING.
Nutritional Supplements:MULTI VITAMIN AND COMBINATION FOR EYE HEALTH,
Vision Products Used:HAVE A CCTV THAT I COULD NOT LIVE WITHOUT, SPECIAL GLASSES JUST FOR USE WITH THE COMPUTER AND ALSO HAVE A 21 INCH MONITOR AND OF COURSE COMPUTER HAS LARGE PRINT. I ALSO USE SMALL HANDHELD MAGNIFIERS.
Additional Comments: YEARS AGO AN OPTHAMOLOGIST TOLD ME I HAD A CLASSIC CASE OF OCULAR HUSTO.LITTLE DID I KNOW HOW THAT WOULD CHANGE MY LIFE YEARS DOWN THE ROAD. AS A CHILD IN NORTH ARKANSAS I WAS FOREVER RESCUING BABY BIRDS THAT HAD FALLEN OUT OF THE NEST. WHEN THE MOTHER WOULD NOT TAKE THEM BACK, I WOULD TAKE CARE OF THEM UNTIL THEY COULD FLY. I AM CONFIDENT THAT IS WHERE I ACQUIRED THIS DISEASE. IT HAS REALLY BEEN DIFFICULT LOSING THE INDEPENDENCE THAT DRIVING ALWAYS GAVE TO NE AND LIVING ALONE IN THE COUNTRY MAKES IT THAT MUCH WORSE. I STILL DO MY OWN COOKING AND HOUSEWORK AND WITH THE HELP OF MY CCTV BALANCE MY CHECKBOOK. I AM THANKFUL FOR THE SIGHT IHAVE LEFT AND HOPE AND PRAY THAT I HAVE NO MORE EPISODES. THERE ARE A LOT OF ADJUSTMENTS TO BE MADE IN ONE'S LIFESTYLE BUT IT CAN BE DONE. I APPRECIATE THE OPPORTUNITY TO SHARE MY EXPERIENCE WITH OTHERS AS THEY HAVE SHARED WITH ME.
Date: -
Name:michelle. Email: <ccrd58@aol.com>
Location: Louisiana USA
Date of First Histo Occurence:Oct. 2001
Affected Eyes:right
Other Stresses at Those Times:Pneumonia 6 months prior to onset
Laser Surgeries:1. Results:some reduction influid, but no change in visual acuity
Sub Macular Surgeries:. Results:
Other Medical Treatment:PDT twice. Just had 2nd one results not yet known. Also, took Sporonox4 months and Diflucan 2 months. Some reduction in fluid noted, but new blood vessels grew anyway.
Nutritional Supplements:multi vitamin
Vision Products Used:no
Additional Comments:I am filling this in for my daughter. She was 14 at the onset of this disease and turned 15 in June. We are very worried but pressing on with treatments being made available to us.
Date: -
Name:heather
Location:margate, kent england
Date of First Histo Occurence:july 2002
Affected Eyes:both
Other Stresses at Those Times:none
Laser Surgeries:-. Results:-
Sub Macular Surgeries:-. Results:-
Other Medical Treatment:-
Nutritional Supplements:-
Vision Products Used:-
Additional Comments:I have just been diagnosed, I live in England and only visited the US on two occasions (Texas Arizona New Mexico & California) for 2 weeks. MY eye doctor has seen spots behind my eye and I have to go back in three months to have more photos done to see if theres any change. I am confused and worried for the future and no one here seems to know about this disease.
Date: -
Name:Internet Marketing
Location:San Francisco, Ca US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Hi to you and your guests. My name is Jazz (Mom liked jazz music). I recently got into the web site promotion business. Are you interested in some online marketing help with your site. I do search engine optimization, keyword marketing research, and pay per click management. In short, internet advertising. If interested, email me at delgato2002@hotmail.com.
Date: -
Name:Cynthia
Location:San Diego, Ca US
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:Greetings to you and your guests. Love what you’ve done with your site. As an educator I can say you have great communication skills.
Date: -
Name:Dawn Hunter. Email: <markmywords@msn.com>
Location:Toronto, Ontario Canada
Date of First Histo Occurence:November 2001
Affected Eyes:right
Other Stresses at Those Times:asthma
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:none
Nutritional Supplements:none
Vision Products Used:none
Additional Comments:I am not a candidate for any laser surguries. I was already extremely myopic, making my retina paper thin. Any laser surgery could tear it completely and cause complete blindness. Since surgery can't restore what I have lost, it isn't worth the risk.
Date: -
Name:Sharon. Email: <angel55ooo@aol.com>
Location:San Antonio, Texas USA
Date of First Histo Occurence:July 1971
Affected Eyes:Both
Other Stresses at Those Times:I am losing the sight in both eyes little by little. I have had Breast Cancer. I was told this was not actived.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:yes
Vision Products Used:Very thick glasses
Additional Comments:
Date: -
Name:Sharon. Email: <angel55ooo@aol.com>
Location:San Antonio, Texas USA
Date of First Histo Occurence:July 1971
Affected Eyes:Both
Other Stresses at Those Times:I am losing the sight in both eyes little by little. I have had Breast Cancer. I was told this was not actived.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:yes
Vision Products Used:Very thick glasses
Additional Comments:
Date: -
Name:Sharon. Email: <angel55ooo@aol.com>
Location:San Antonio, Texas USA
Date of First Histo Occurence:July 1971
Affected Eyes:Both
Other Stresses at Those Times:I am losing the sight in both eyes little by little. I have had Breast Cancer. I was told this was not actived.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:yes
Vision Products Used:Very thick glasses
Additional Comments:
Date: -
Name:Sharon. Email: <angel55ooo@aol.com>
Location:San Antonio, Texas USA
Date of First Histo Occurence:July 1971
Affected Eyes:Both
Other Stresses at Those Times:I am losing the sight in both eyes little by little. I have had Breast Cancer. I was told this was not actived.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:
Nutritional Supplements:yes
Vision Products Used:Very thick glasses
Additional Comments:
Date: -
Name:Angela Jones. Email: <adjones1@msn.com>
Location:Brandon, Mississippi USA
Date of First Histo Occurence:March 1996
Affected Eyes:both now
Other Stresses at Those Times:I found out only today that I have OHS. Until today, I have been repeatedly advised that I had Macular Degeneration. And still don't understand why my regular retinal specialist didn't just tell me what was wrong in the first place. Until today, I truly had no idea what was going on other than I was losing my eyesight.
Today I went to another doctor for a second opinion at the urging and encouragement of my husband, parents, and siblings. This doctor explained what I had, how I got it (presumably), and how to monitor it progression.
The initial onset in 1996 came on suddenly. The events in my life at that time were tramatic enough as I had just completed a lawsuit for harrassment against my employer and broken up with my boyfriend of 6 months at the time. The retinal specialist I was referred to did surgery on my eye. I found out today that the surgery he did was a type (less refined version) of a subretinal surgery. It resulted in an 95% loss of central vision in my left eye (the only eye affected at the time). Afterwards, he explained that I had a disease called Macular Degeneration and that there was no cure and that eventually I would go blind.
Over the years that have followed I have also had lots of female problems (diagnosed with PID, Cervical cancer, tumors, cysts, and most recently endometrial cancer that resulted in a hysteretomy last year). For awhile, each visit to my ob/cyn resulted in a visit to my retinal specialist (or vice versa).
Last May, I was told that the disease had started in my right eye and that it was a matter of time before I would lose my central vision and be legally blind. I have pretty much just been waiting for it to happen. I am a very impatient person and the wait is still not over.
I have an extremely stressful job and they are not taking too kindly to my being off work right now (even though I am on medical leave for the time being).
My visual acuity is still good in my right eye but I now have a blind spot that leaves most of the upper left quarter of the amsler grid blank to me and still have/see distortion around the blind spot in 3 places.
But the good news is my vision isn't bad enough to be consider "low vision" yet as I have approx. 20/30 vision on a good day (worse on a bad day). And if I am real careful I can still drive my car, but it scares me to death as I generally cannot see oncoming traffic.
Laser Surgeries:6 or 7 now. Results:immediate and progressive vision loss with each one. 3 or 4 on the left eye and 3 so far on the right eye and possibly another one tomorrow(7-2-02), including 1 PDT. All have been successful so far (so I have been told).
Sub Macular Surgeries:1. Results:immediate loss of approx. 95% (if not more) of my central vision in my left eye. But they say it was a successful surgery.
Other Medical Treatment:no
Nutritional Supplements:No
Vision Products Used:magnifying glasses with the computer and for reading because they make reading easier for me (but the doctor says I don't need them).
Additional Comments:Only that I am scared, terribly depressed, and hope that this will all be over soon so I can get on with the rest of my life (whatever it may be).
Date: -
Name:Elizabeth Morse. Email: <emorse@iastate.edu>
Location: Iowa USA
Date of First Histo Occurence:May 1997
Affected Eyes:Left
Other Stresses at Those Times:I am a music major. In Feb. 97, I noticed that the music staff lines were all crooked. I went to my opthalmologist and he said I had active histoplasmosis. He did a laser on me and all was fine. In Sept. 1997, it got much worse much quicker. I went from seeing 20/20 in my left eye to 20/200 then to 20/400 in about a two week time slot. Just prior to the first occurance (May 1997), I had tremendous headaches. My regular physician diagnosed me with migraines. I didn't really believe I had migraines since I was able to function normally (do kitchen chorse, make a huge Sunday dinner and bake two pies all while listening to the radio). My understanding of migraine headaches is that it usually incapacitates the people who suffer from them. I ended up having the submacular surgery in June 1998. I have not had any blood vessel regrowth from the histo scar tissue and amazingly enough, my headaches are now gone. Although I have not been told that the headaches were related to my eyes, I can't help but wonder. The vision in my left eye (with correction) is 20/400. I have a wonderful doctor and have not had any problems since the surgery in 1998. I don't know exactly the prognosis from the surgery but the longer I go without a recurrance, the better I expect the outcome will be. It is not an easy surgery to go through but in my own particular case, I feel it was worth it. I am sure each case is different and the decision on whether or not to undergo the surgery must be made with the understanding of what it entails as well as what will be expected of the patient to get the best possible outcome. It also helps to have a doctor you are completely comfortable and confident with. I am very lucky to have the doctor I do. He is wonderful. He also didn't do or say anything to terrify me about my condition. He patiently answered the many questions I had.
Laser Surgeries:1 (some laser during surgery). Results:I am happy with the results. I don't have my vision back but I can see better now with both eyes open than I did before the surgery.
Sub Macular Surgeries:1. Results:See above.
Other Medical Treatment:No
Nutritional Supplements:No
Vision Products Used:I use magnifiers when reading textbooks, doing needle work, and data entry at work.
Additional Comments:
Date: -
Name:Gary . Email: <gcris@iglou.com>
Location:Lexington, USA
Date of First Histo Occurence:July 2000
Affected Eyes:Right
Other Stresses at Those Times:Not particularly. I had just returned from a week long seminar and had driven approximately 15 hours straight through (not the first time I've ever done that in my life). For the next few days I thought my glasses needed adjusting which I had not had done in a few years. Needless to say it was quite a jolt when it was discovered that I could not see anything with my right eye. The optometrist who said I had a hole in my right eye, immediately arranged for me to see a rentinal specialist.
Laser Surgeries:None. Results:At the conclusion of what I have to admit was a most lengthy examination, I was told that I had Ocular Histoplasmosis Syndrome, that I had histo spots in both eyes, one of which had burst and bled and the scar tissue was too close to the fovea for laser surgery.
Sub Macular Surgeries:One. Results:I was selected to participate in a research project of Submacular Surgery Trials. I underwent surgery that is called Pars Plana Vitrectomy, Membrane Peel, Fluid Gas Exchange, Submacular surgery, Excision of Submacular Scar-right eye. I was provided with a most explicit set of post-operative instructions which included my keeping my head face down at all times for at least 2 weeks. It has been nearly 2 years since the surgery, and so far the physicians and I (even though I do not have central vision in my right eye) regard the operation a success.
Other Medical Treatment:I keep an approved supply of eye drops handy for times when my eyes feel particularly strained, reddened, or "sandy".
Nutritional Supplements:Nothing that was recommended. I make sure I maintain a healthy diet. I eat lots of DARK GREEN fresh vegetables which contain lots of Lutein & Zeaxanthin.
Vision Products Used:Yes. The work I do requires a lot of reading. I have several different types and sizes of rulers which have special see through magnifying srips that run the length of the rulers for when print is too faint or too small. I have prescribed sunglasses of the same prescription of my regular eyeglasses to avoid possible damage in sunlight. I have thought about getting one of those small collapsible white sticks that fold like a periscope just to carry in my pocket in case I found myself in a large crowd in strange surroundings and needed a little help getting my bearings.
Additional Comments:I always thought of histoplasmosis as a fungal disease which infects the respiratory system. When I was told I had it in my eyes - that really blew me out. It is indeed frightening to suddenly discover one's sight is at risk. Until this came along, I was one of those people who never had anything much physically wrong all my adult life. Mother Nature suddenly got my attention. The first thing I did, before agreeing to surgery or risk doing anything rash, was I immediately began researching what this was all about. I read 4 books on macular degeneration because I found that the sysmtons are very similar. One book was written by an opthalmologist who was himself a victim. I searched the internet worldwide of every .org site I could find, U.S., Canada, Europe, to learn who knew or didn't know much about this. I read more about bad experiences with laser surgery that I could keep track of. I went by recommendation and concensus of physicians I especially trusted for references of an opthalmologist who had background in this area so as to get a second opinion. I was assured that the retinal specialist who diagnosed me was one of the best in the U.S. I became proactive medically and I continue to be proactive where my health is concerned. Because of that I avoided another calamity that was close to happening. As to the eye surgery I decided to proceed with, I am glad I did it. The black spot I used to see out of my right eye is no longer black. It is now a faint gray with little peep holes. Whether it will ever get any better I don't know. I doubt it. I drive. I work my normal schedule. I'm not ignorant to the possibility that one day it could happen again in the other eye. The best I can do about that is rest right, eat right, and continue to be checked by the best at least twice a year. I accept and tolerate what I call a "social phopbia". It occurs when I am in a large crowd in unfamiliar surroundings. I am always afraid of someone handing me something and their letting go just a second too quickly and my appearing clumsy. I find people though are very understanding if one just admits to a slight vision impairment. I have read everyone's experiences and comments on survey site. I have learned from all your comments. I hope I will have made at least a small contribution to all of you and all who may follow. I welcome hearing from you. Please identify the subject as "HISTO" to defray my nervousness about opening strange emails.
Date: -
Name:kathridgewell. Email: <kathridgewell@yahoo.com>
Location:Aberdeen, Scotland, Great Britain
Date of First Histo Occurence:October 1997
Affected Eyes:1 both histo spots in other
Other Stresses at Those Times:breakdown in long term relationship, flu in the January of that year
Laser Surgeries:1. Results:regrowth within one month
Sub Macular Surgeries:1. Results:loss of central vision in right eye
Other Medical Treatment:before surgery was on predisolone and cyclosporin for over a year but when they tried to take me off the drugs the bleed returned leading to surgery.
Nutritional Supplements:taking "eye vites" at moment with vite and beta carotene also considering bilberry
Vision Products Used:can still read so ok for now
Additional Comments:any info would be helpful as living in britain not much seems to be know about this.
Date: -
Name:Maggie Willis Salazar. Email: <Maggie@the-home-zone>
Location:Houston, Tx. USA
Date of First Histo Occurence:1984
Affected Eyes:Right
Other Stresses at Those Times:Actually I don't remember any specific stress I was going thru. Sometimes
life if just stressful !
Laser Surgeries:Laser-One. Results:Stopped the hemmoraging in my eye but have a
blind spot.
Sub Macular Surgeries:None. Results:
Other Medical Treatment:Was given strong doses of Steroids after surgery which as I remember having
strong side effects.
Nutritional Supplements:No.
Vision Products Used:I've always been near sighted so I wear glasses.
Additional Comments:Thank you so much for all your comments. I am lucky to live in Houston, Texas which has a wonderful medical center. My surgeon was top notch. I was terrified and had never heard of the disease..really afraid of going blind as we all are. Its almost been 20 years and I've led a pretty normal life...thank God. I'm now 55 years old and my vision seems to be weaker so I am going for a check up this week to a new doctor who has taken over my file. God Bless all of you and thank you for sharing your stories.
Date: -
Name:Jane. Email: <bzecnly@hoosierlink.net>
Location:Akron, IN USA
Date of First Histo Occurence:Spring of 97
Affected Eyes:Both
Other Stresses at Those Times:First occurance approximately 6 months after ending a nasty divorce. Second onset could have been from stress after knee surgery. The rest I really can't think of any major stress
Laser Surgeries:5. Results:I am going to see my surgeon tomorrow. As of Friday was seeing or not seeing 20/200 in left eye. This seems to be the problem. I've had 1 laser and 3 PDT in left eye. One hot laser in right eye. Still seeing 20/20. When I went to my regular OD on Friday, I've got more swelling behind macula and fluid. Another leakage
Sub Macular Surgeries:none. Results:
Other Medical Treatment:My problem seems to be a great immune system. My body wants to keep fighting something that isn't there. My surgeon suggested getting AIDS or terminal cancer to slow this down. (LOL) But he said the side effects were pretty bad. He was joking
Nutritional Supplements:None, but the green tea sounds like something I might try. I love green tea!
Vision Products Used:I've worn glasses or contacts since I was 9. I'm now 38.
Additional Comments:
Date: -
Name:Jennifer. Email: <jnoel1273@aol.com>
Location: Michigan USA
Date of First Histo Occurence:Fall, 1995
Affected Eyes:Both and Chest, lungs and Heart
Other Stresses at Those Times:I was getting ready to graduate from college and get married.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:medistenscopy (2)and medications
Nutritional Supplements:yes
Vision Products Used:yes, eye glasses and my vision seem to get worse as the years pass.
Additional Comments:I grew up in a wooded area and the house was damp and had problems with molds. We also had pets including chickens for a short time. I also grew up all farms and played in a barn a lot.
Date: -
Name:D. Wince. Email: <wince_74037@yahoo.com>
Location:Jenks, Ok USA
Date of First Histo Occurence:January 1980
Affected Eyes:Primarily the Right eye
Other Stresses at Those Times:Completing final semester of College
Laser Surgeries:. Results:Laser surgery for right eye wasn't an option as my doctor said the hemorrhage was too close to the center. The surgery was just too risky and it might cause me to lose the vision I had left.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:Never taken any or heard that they could help
Vision Products Used:reading glasses but not related to histo, just old age
Additional Comments:Noticed vision problems during my senior year of college in January 1980. Went to optometrist then ophthalmologist then to retina specialist at Plaza area of KC. Doctors found some scaring in both eyes but most of my problem was in my right eye with no noticeable vision loss in the left. I lost reading vision in the right eye but peripheral vision is fine. Laser surgery for right eye wasn't an option as my doctor said the hemorrhage was too close to the center. The surgery was just too risky and it might cause me to lose the vision I had left. No noticeable vision change since the initial occurrence now over 22 years ago. The initial diagnosis of Histo was very scary as I felt I was going blind with a rare disease that no one really understood or could help. Since basically the doctors couldn’t do anything this also added to my fear. I did grow up in West Virginia along the Ohio River where occurrences appear to be prevalent. Also was around birds animals and farms growing up. I have been very fortunate, as my eyes have adjusted such that depth perception has never been a problem (played softball for years afterwards). I feel very fortunate compared to many who have this disease with far greater problems. I never experienced any other health problems that appear to be directly related to the disease. I do have apprehension anytime something minor happens to my eyes or vision. The best thing I did when I first experience this problem was pray to God. I told him I accept whatever the outcome was but trusted him to take me through this situation even if it meant I wasn’t going to be able to use the education I was about to complete. If I went blind or near blind I trusted that he would provide a way for me. I received a peace that day about my disease which I remind myself whenever I have doubts. While I know this may not be God’s answer for everyone I pray that this somehow helps anyone else out there that is dealing with this rare disease. God Bless.
Date: -
Name:Katy Nye. Email: <KatyN@WesternGroup.com>
Location:Wright City, MO USA
Date of First Histo Occurence:June or July of 1995
Affected Eyes:First the left and then six years later, the right also
Other Stresses at Those Times:Being only 17 when the first eye went wasn't a big deal. I wasn't worried, but shortly before I got married and turned only 24, the right one started and frightened me quite a bit!!! I seem to have health problems that are unexplainable!! Went to the emergency room one night for extreme abdominal pain and they still don't know what happened or what caused it!! I right now am being treated for terrible heartburn and thankfully after a scope I know that I don't have any lasting damage to the esophogus (?)
Laser Surgeries:1. Results:This one and only surgery was done on the right eye in 7/01. It has stopped the leakage from affecting my central site so that I only have a spot off to the right of my vision in that eye. The center vision of the left eye was already lost by the time that I noticed it! After the surgery, I was in and out of work for quite a while and not sure if I could return. There was some after affect that they had never seen that took quite a while to go away. It affected the center vision and I just figured that they messed up with the laser and blinded me, but thankfully, it went away
Sub Macular Surgeries:. Results:
Other Medical Treatment:Fighting depression
Nutritional Supplements:NO
Vision Products Used:Just contacts/glasses for the right eye.
Additional Comments:It's rather upsetting to think that I could go blind this early in life without a chance to see my future children. I have been told that there is a doctor working on a chip that will be inserted into the back of the eye and restore some of the lost vision. I just hope that this happens in my lifetime!! God bless to all that have to go through anything like this!!
Date: -
Name:Rob Taylor. Email: <momx4boys@hotmail.com>
Location:Hanscom AFB, MA USA
Date of First Histo Occurence:Sep 1999
Affected Eyes:Left
Other Stresses at Those Times:Was getting ready to PCS when this cropped up.
Laser Surgeries:4. Results:1 "Hot Laser" in 99 left me with a blind spot (just left of center) and a little area of 20/20 center vision. Lasted until Aug 2000 when I had a recurrence. Had PDT. That restored things to where I was before and held for 8 months. Had 3rd occurence in April 02 and had PDT again. Things improved for about 3 weeks but went south (was leaking again) and had another PDT in late May. Waiting for things to settle. Now have circle of blindness around center vision and center vision is still signifigantly reduced. Still can't read with it.
Sub Macular Surgeries:. Results:
Other Medical Treatment:n/a
Nutritional Supplements:Daily multi-vitamin.
Vision Products Used:No
Additional Comments:Grew up in Northeast Pennsylvania. Lived in town (not on a farm). Go figure. I work computers in the military so my vision is important to my career. Initally presented as noticing lines on my screen were wavy just top left of center. I just wish I could get this thing from re-leaking. Contemplating sub-macular surgery, but going with PDT right now. So far I have not had any problems with my right eye. Thank God! And am praying it stays that way. I can't catch a softball to save my life but can still drive! As a father of 4, I'm nervous about losing more vision and becoming dependent. I'd love to talk with others who are dealing with this. God bless all of you. All of us!
Date: -
Name:Edmund
Location:London, Kent England
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:My name is Edmund Marco and it's a pleasure to sign your guest book. I work for an advertising agency in London. Our agency represents direct marketing companies that are involved in the marketing of products as seen on TV in England. Most of the infomercial products come from the U.S. but then again we export our talents as well. My brother has appeared in infomercials in the U.S. advertising various products. I think it's hilarious that English people respond so well to American products while Americans tend to respond well to sales people who have an English accent!
Date: -
Name:Louie P Hefner, Jr. Email: <hef1231@rectec.net>
Location:Colcord, Oklahoma USA
Date of First Histo Occurence:unknown
Affected Eyes:one eye has hole in it
Other Stresses at Those Times:hospitalized at Keesler AFB in 1958 due to loosing weight. Was treated as if I had TB.
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none
Nutritional Supplements:none
Vision Products Used:just wear glasses to read and drive. Last eye exam in Mar the Dr stated I neede cataract surgery.
Additional Comments:I grew up in Illinois and worked around chickens as a young boy.
Date: -
Name:Beth Crain. Email: <bcrain@indiana.edu>
Location:Bloomington, IN USA
Date of First Histo Occurence:1995
Affected Eyes:right
Other Stresses at Those Times:I have multiple health problems including lupus, low thyroid, diabetes, and others. I have been on cortisone many times.
Laser Surgeries:two. Results:Fair. I have a large blind spot and my vision is distorted due to scaring.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Injection in the eye.
Nutritional Supplements:no
Vision Products Used:yes. kuzweil 3000.
Additional Comments:no
Date: -
Name:Don Blais. Email: <dblais@radicus.net>
Location:Sykesville, Maryland USA
Date of First Histo Occurence:1974
Affected Eyes:left only
Other Stresses at Those Times:About 3 mos. before condition developed had taken prednazone (a steroid) for treatment of (sounds like)parasysarisis. I personally speculate that this may have trigered the condition and would like comments on this.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:no
Nutritional Supplements:no
Vision Products Used:
Additional Comments:As indicated above, I would like to know if anyone has found a possible connection between the steroid drug prednazone and the trigering effect on histo spots.
Date: -
Name:Carol Richardson. Email: <crich1941@aol.com>
Location:Kansas City, MO USA
Date of First Histo Occurence:November 1996
Affected Eyes:Left only
Other Stresses at Those Times:caring for ill husband and mother plus working part time.
Laser Surgeries:one. Results:no change
Sub Macular Surgeries:none. Results:
Other Medical Treatment:just checkups and dye in eye once.
Nutritional Supplements:strong vitamin
Vision Products Used:glasses for reading and sewing. vision is right eye is much weaker than 5 years ago.
Additional Comments:Had never heard of this disease until I was diagnosed. I grew up around lots of animals, chickens, birds in country.
Date: -
Name:ArthurD Peirce. Email: <dave@christos.cjb.net>
Location:San Marcos, Texas USA
Date of First Histo Occurence:Early 1980's
Affected Eyes:Both
Other Stresses at Those Times:None I know of. There were little areas of distortion in both eyes starting back in early 80's, but no problem until 2000 so undiagnosed until then
Laser Surgeries:One, 2000. Results:Sudden lesion in central vision area of left eye, repaired with laser, central vision destroyed.
Sub Macular Surgeries:None. Results:
Other Medical Treatment:None
Nutritional Supplements:No. Standard diabetic type 2 diet.
Vision Products Used:Reading glasses, but for far-sightedness not histo.
Additional Comments:Grew up on farm in Blue Ridge Mountains of Northern Virginia; lots of barns and sheds, cattle, horses, hogs, chickens, pigeons and other birds, some caves with bats, all kinds of wildlife. Boy heaven!
Date: -
Name:Evonne Burton. Email: <ejburton@fuse.net>
Location:Hamilton, Ohio USA
Date of First Histo Occurence:1996
Affected Eyes:both
Other Stresses at Those Times:My job was very stressful at the time. Not sure if that had anything to do
with it or not.
Laser Surgeries:2 in the left 0 in right. Results:First surgery in 1996. Had second surgery in
1998. So far so good. I go for my yearly exame
this Thursday. I don't notice the blind spot
to much any more.
Sub Macular Surgeries:. Results:
Other Medical Treatment:Just using my Amsler Grid daily
Nutritional Supplements:A multity vitamin
Vision Products Used:I have prescription glasses that I wear. I was wearing them before all of this starting happening.
Additional Comments:
Date: -
Name:Laura. Email: <laurakay76@juno.com>
Location:Lehigh Valley, PA USA
Date of First Histo Occurence:April 2000
Affected Eyes:right
Other Stresses at Those Times:nothing I'm aware of
Laser Surgeries:none. Results:my doctor said the laser surgery option was not a very good option for me, as it had a highly limited chance of success and a very good chance of ruining what vision I have left in my eye
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none
Nutritional Supplements:
Vision Products Used:I've been using eyeglasses and contact lenses since I was six years old; that's the only vision aid I've ever used
Additional Comments:sorry I couldn't be of more help here =)
Date: -
Name:Tessie Tyrrell. Email: <tessie@mayberryamerica.net>
Location:Glendale, AZ USA
Date of First Histo Occurence:Unknown
Affected Eyes:Both
Other Stresses at Those Times:None
Laser Surgeries:1. Results:Too early to tell.
Sub Macular Surgeries:zero. Results:
Other Medical Treatment:
Nutritional Supplements:Daily vitamin
Vision Products Used:None
Additional Comments:I am now 39 but have had histo since I was a small child. I just started having problems with the blood vessels growing around the scar tissue in my right eye. I noticed spots and blurry vision about 3 weeks ago and have been to many doctors to find out what is wrong. I was born and raised in Minnesota and the Dr. said it is common in people who have lived along the Mississippi valley. I have worn glasses since I was 5 years old and am very nearsighted. I never had problems with my eyes until now. It is a scary thing to have happen and I thank God for the wonderful doctors in Minneapolis. I just had laser surgery yesterday and so far I do not notice any difference. I am to go back for a checkup in 3 weeks. I hope I never have to go through this again but the Dr. said it is possible it will come back. I am so happy to find other people with this.
Date: -
Name:yvonne elderman. Email: <y.elderman@hetnet.nl>
Location:doesburg, gelderland netherlands
Date of First Histo Occurence:sept 1995
Affected Eyes:1995 right2002 left
Other Stresses at Those Times:bump on the head?
Laser Surgeries:none. Results:operated in 1995
now perhaps laser
Sub Macular Surgeries:1. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:yvonne
Location: USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Valerie Prewitt. Email: <prewittv911@yahoo.com>
Location:Union City, Indiana USA
Date of First Histo Occurence:Oct 2001
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:I wanted to add that I had no health insurance at the time of diagnosis and I am now over 11,000.00 in debt. I could not get any financial help due to my child support put me over limit to qualify for charity care at the hospital I went to. If anyone has any information that could help me pay my bills, I would sure appreciate the info. I have since moved back to my home town and have gotten a job with insurance but my insurance now will not cover a pre existing condition for 280 days. That is another reason why I wont go to the doctor right now. I just cant go into any more debt. I cant afford it. I have emailed the national eye institute wanting them to know that I would participate in any kind of study they have on ocular histo. I havent heard anything back from them yet.
Date: -
Name:Valerie Prewitt. Email: <prewittv911@yahoo.com>
Location:Union City, Indiana USA
Date of First Histo Occurence:October 17,2001
Affected Eyes:left
Other Stresses at Those Times:I had just went through a divorce and moved my children and I 2 states away to West Virginia.
Laser Surgeries:one-PDT. Results:The leision I had was very close to my center vision so hot laser was not an option due to my surgeon thought it would cause more damage so they tried the new procedure using the cold laser. It shunk the lesion and flattened it out.
Sub Macular Surgeries:one. Results:regained 20/20 vision. Things still looked somewhat distorted but not as bad. They classified me as having 20/20 vision due to the fact that I could read the 20/20 line on the vision chart.
Other Medical Treatment:I had subsequent vitrectomy, gas bubble and membrane peel.
Nutritional Supplements:no
Vision Products Used:I use a pair of over the counter reading glasses. I was told by 3 different doctors that prescription glasses would not help me.
Additional Comments:I am 32 years old and have always had 20/20 vision. I have never worn glasses. This diagnosis hit me very hard and just out of the blue. I had never even heard of histoplasmosis. Just in the past week I had noticed a change in my vision again. I have 4 more histo spots in my affected left eye. I have one large histo spot in my right eye and several smaller spots. I no longer worry so much about my left eye. My concern now is my right eye. I am so terrified that the histo is going to active in my good eye. It is so frustrating when the doctors tell me there is nothing that can be done until the disease goes active and then we can just hope for the best. I have not made an appointment to go back to the doctor to check my left eye since my vision has changed. I am just so scared my doctor is going to tell me the rest of the spots in my affected eye have gone active. I dont know if I can take another surgery. I was so glad to find this web site. Someone else stated in here that no matter how much you explain it to people, they just have no idea how it feels to have this life altering disease unless they have lived it. Anyone on here please feel free to email me anytime. I would love to be able to correspond with others like myself. God bless all of you!
Date: -
Name:pAULA. Email: <p_williams61@hotmail.com>
Location:Hoopeston, Ill USA
Date of First Histo Occurence:april 2000
Affected Eyes:right
Other Stresses at Those Times:regular job related stress and a little extra family related stress
Laser Surgeries:. Results:
Sub Macular Surgeries:1. Results:did not work for me
Other Medical Treatment:none
Nutritional Supplements:daily vitimin
Vision Products Used:no
Additional Comments:I had the surgery because they told me I had a 50-50 chance of saving my sight but I losy all direct vision in that eye after the surgery
Date: -
Name:Mary Hamlin. Email: <pahofwa@aol.com>
Location:Shelton, WA USA
Date of First Histo Occurence:1976
Affected Eyes:left primarily
Other Stresses at Those Times:No abnormal stress can be determined. However it is very stressful thinking about how it will affect me from here on out.
Laser Surgeries:lazer 74 zaps 3/11/02. Results:too soon to know, however central vision of left eye will be reduced. The scar is close to right edge of the central vision area.
Sub Macular Surgeries:none. Results:none
Other Medical Treatment:none
Nutritional Supplements:multivitamins, vit. E
Vision Products Used:only glasses which I have worn since I was 10. I am now 62.
Additional Comments:My first incident was on midial peripheral area of left eye and no laser was needed. I did not have the DX of POH until 1999 by my son in law who is an opthalmologist and received his training in Iowa where he saw many cases. I have lived in Washingtion state since 1975 and Oklahoma Panhandle and Kansas prior to that.
Date: -
Name:Linda Ward. Email: <lmoward@pacbell.net>
Location:clayton, ca USA
Date of First Histo Occurence:1978
Affected Eyes:both
Other Stresses at Those Times:Normal stress of first pregnancy
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:none
Nutritional Supplements:no
Vision Products Used:bi-focals
Additional Comments:Do the rarity of this disease in CA at the time I had my initial problem, it took several months to figure out what was happening with my eyes. It was a very scary time for me, I certainly can feel for the people writing in with much more damage then what happened to me. At the start of my problem I was almost totally blind in one eye. The specialist felt that the surgery available at the time would do more harm than good. My vision became better after my daughter was born. Both eyes still have damage, but my vision is very good when both eyes are being used. It has been 23 years with no recoccurence. I still worry about my sight, glad to find this information on the web. I lived in Indiana when I was young - I imagine that i picked up the disease there.
Date: -
Name:Anne Johnson. Email: <abaxterjohnson@netscape.net>
Location:East Flat Rock, North Carolina USA
Date of First Histo Occurence:Diagnosed October 2001
Affected Eyes:rt. eye leaking, left eye with spots
Other Stresses at Those Times:job stress
depression/anxiety
Laser Surgeries:one. Results:Done as a follow up to a submac to seal off leaking
vessels. Doc says that the eye is looking good.
Sub Macular Surgeries:one. Results:some restoration of vision. Before the submac, couldn't
see the chart on the eye doctor's wall, let alone the big
E. Now, can see the chart, the big E, and the letters on the
row below. Have developed small cataract, but nothing
that the doctor even wants to treat at this point.
Other Medical Treatment:For histo, just 40 mg. prednisone at outset of diagnosis.
I thought I improved, but the doc said that it didn't work.
Nutritional Supplements:No.
Vision Products Used:Just reading glasses; the cheap kind you can get at Walmart. Occasionally a magnifying glass to read very small things.
Additional Comments:No.
Date: -
Name:shelly. Email: <shelly.messersmith@cbshome.com>
Location: nebr USA
Date of First Histo Occurence:10/91
Affected Eyes:both
Other Stresses at Those Times:my son was 7 mo's old at time of diagnosis....maybe pregnancy....
i've been told pregnancy aggrevates condition....
Laser Surgeries:2. Results:lost all but some peripheral vision in lft
eye....lost vision to lft of center in rt..
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:no
Vision Products Used:eye-glasses,,,,need something now not sure what....
Additional Comments:i am 33 and have recently noted a big decrease in rt. eye vision... doc..doesn't see it angio. doesn't show anything he said...but i see fluid around scar on pics from angio...i go back tomorrow for re-check i notice my blind spot in good eye has gotten darker and larger... it is difficult to drive i have to really concentrate and focus.... i fear giving up driving and relying on someone...recently fell down steps and broke hand i blame that on my shoes and carpet,,,but think it has more to do with depth perception....
Date: -
Name:Jane. Email: <jane_wilson76@yahoo.com>
Location:Williamsport, Indiana USA
Date of First Histo Occurence:2001
Affected Eyes:2002
Other Stresses at Those Times:depression, fatigue
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:have surgery tomorrow, so results unknown at this time
Other Medical Treatment:
Nutritional Supplements:potassium
Vision Products Used:glasses
Additional Comments:
Date: -
Name:Lisa. Email: <prinkayla@hotmail.com>
Location:Fort Wayne, IN USA
Date of First Histo Occurence:8/2000
Affected Eyes:Both
Other Stresses at Those Times:I was an accountant. Gearing up for tax season.
Laser Surgeries:4. Results:First was a hot lazer, lost all vision in Right eye. Rest were PDT or Visudyne, First 2 I lost more vision in Left eye, I changed Doctors and the 4th PDT was without problems. So Far.
Sub Macular Surgeries:. Results:
Other Medical Treatment:No, but for all who have PDT done, I was one who had very bad headaches. Eat Salty foods(potato chips) before and after surgery. It really helps.
Nutritional Supplements:Just vitimans.
Vision Products Used:Yes, CCTV, magnifyers, Windo Eyes and anything that will help.
Additional Comments:
Date: -
Name:Stacey. Email: <chaddywhacks@hotmail.com>
Location:Tompkinsville, Kentucky USA
Date of First Histo Occurence:2001
Affected Eyes:Disseminated Histo(Lungs)
Other Stresses at Those Times:Constant joint and muscle pains,pleuricy,extreme weakness
Laser Surgeries:XXXXXXXXX. Results:
Sub Macular Surgeries:XXXXXXXX. Results:
Other Medical Treatment:I have had A lung biopsy,Thoracotomy,had part of my lung removed,been put on a breathing machine,had amphotericen B treatments
Nutritional Supplements:Potassium
Vision Products Used:XXXXXXXX
Additional Comments:I am overwhelmed by the number of entries here,and even more by the number of entries from Kentucky.When I was diagnosed with Histo I was told that it was very rare.By the time I was diagnosed the Histo was Killing me.For almost A year I kept going to doctors and emergency rooms with strange reoccuring symtoms.Severe muscle pain,A swollen gland in my neck that would come back every couple weeks,stabbing pains in my chest and back at night,and various other symtoms.I was told I had Arthritis,Pleuricy,Depression,etc.,etc. They would see I have no insurance,give me A shot or another pricey prescription that I couldnt afford and never worked and send me home.I had to quit working because I could barely lift my arms and felt like I was going to pass out all the time.On bad days I would need help dressing myself.My husband became very cold about it.He was tired of hearing about my roaming pains and thought I just didnt want to work anymore.He would tell me what a waste of time it was when I wanted to go see another doctor.He'd say"they are going to tell you what all the others did,there's nothing wrong with you" So I started staying in bed and keeping my discomfort to myself.Finally after A year of this torture I came down with a fever,went to the hospital where they said I had Pneumonia.(Still not listening about my joint pain) After A week of antibiotics I got worse and started having trouble breathing.They sent me to another hospital where they finally,after tring every other painful procedure,cut me open,separated my ribs,and scraped my lungs,removed a piece of my lung,and found out I had histo.A few days later I had to be put on a breathing macine.They had to induce a coma.Supposedly I was in the last stages of the Histo and it was killing me.It had spread through my body.I finally pulled the breathing tube out myself,luckily I didnt pull my vocal chords out with it,and started recovering from there.I had to get weeks of physical therapy to walk because I had been in bed so long,Ihad to be weaned off oxygen,and when I finally did get to come home I had 5 hour Amphotericin B treatments every day at the hospital for 3 weeks.My lungs are better,but I still have joint pain all over.They tell me it will take 8 months to a year to recover.It has been the scariest,most frustrating thing I've ever gone through.Has anyone else almost died,or had the muscle/joint pain associated with this disease?Im at the end of my rope.please help.Thanks and God bless you all.
Date: -
Name:Donna. Email: <Damonzone@aol.com>
Location:Crescent Springs, KY USA
Date of First Histo Occurence:11/99
Affected Eyes:Both
Other Stresses at Those Times:Just normal stress from being a stay at home mother of 2 small children.
Laser Surgeries:Third one this Monday 2/4/02. Results:I am going in for my 3rd PDT treatment this monday. I had my first PDT in July of 2000, shortly after it was approved for use on Histo patients. It was very successful for about a year...my vision seemed to get better after 1st treatment. Shortly after September 11, I noticed my right eye becoming distorted again. In October I had a second PDT. Initially it got better, but around December it started regressing again. Hopefully this next one will help.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:Every vitamin the health food store recommended. I take 1000mm of C, 1000mm of E, An anti-oxidant, along with a regular multi-vitamin.
Vision Products Used:Glasses and Contacts
Additional Comments:I was 36 when this started. I was driving down our road at night and all of a sudden noticed a black spot in my right eye. I went right away to a retinal surgeon. I have histo-spots in both eyes, but it is only affecting my right eye in the center of my vision at this time. The doctor said that currently I am experiencing a lot of swelling which seems to cause more blurriness rather than distortion. In the past I had a cortisone shot in the eye (quite gross), but I guess that is not an option at this point. This is a very frustrating disease. I have read alot of the other entries and must admit that when it first happened to me I was very scared and afraid. I guess now I am at the point that this is in God's hands. I am doing everything I can, just taking one day at a time. I think that worrying and stressing over it just makes it worse. I have asked (sometimes begged) God to please just let me see my childrens faces as they grow. Hopefully he will hear and answer my prayer. God Bless you all, lets pray for a cure!!
Date: -
Name:KIM
Location:NICH, KY USA
Date of First Histo Occurence:2/1/01
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Ruth Wales. Email: <Ruth.Wales@camden.gov.uk>
Location:London, UK
Date of First Histo Occurence:1998-2002
Affected Eyes:both
Other Stresses at Those Times:Not especially - however, my weak eyes are affected by Chlorine in swim pools, household cleaning and DIY products, smoking and chemical intake.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:Steroids, licorice. recurred so stopped both.
Nutritional Supplements:'Eye vites' - E and A. They work in general!
Vision Products Used:Just glasses and contacts, around 9 dioptres.
Additional Comments:Worn glasses since 4 years old, haven't got histo, have holes in the inner choroid layer and associated vision problems. The main blind spots are of course in the middle of the eye, right where I am trying to see stuff. Sucks. However, is now 4 years on, and the left eye is nearly recovered. Its not really supposed to. The right eye is now going through its blind spot plus and associated peripheral vision problem, and I fully expect that to recover in 4 years too. I tried steroids and swore never again, and also licorice, which worked but it returned. Factors in macular degeneration in general would seem to be virus linked, immune system linked, bio unfriendly chemicals linked. Strongly chorinated swimming baths are the worst I am sure.
Date: -
Name:Jodi. Email: <msjodi@webtv.net>
Location:Collierville, Tennessee USA
Date of First Histo Occurence:1955
Affected Eyes:both
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:yes...Estrovan with vitamins
Vision Products Used:Yes, magnification devices (hand-held); computer enchancement
Additional Comments:I have amblyopia in both eyes which is a detriment to my vision
Date: -
Name:Rowena. Email: <spangly_row@hotmail.com>
Location:Malmesbury, Wiltshire England
Date of First Histo Occurence:End of September 2000
Affected Eyes:Right Eye
Other Stresses at Those Times:Glandular Fever a year before that
Laser Surgeries:None. Results:
Sub Macular Surgeries:One. Results:A very small increase in my central vision.
Other Medical Treatment:No other medical treatment.
Nutritional Supplements:No.
Vision Products Used:
Additional Comments:I have had several, seemingly unrelated, allergies appear since I developed POHS, when I had none before.
Date: -
Name:Stacy. Email: <shaydel@lausafcu.org>
Location:Gonzales, LA USA
Date of First Histo Occurence:June/July 1999
Affected Eyes:Left
Other Stresses at Those Times:Was getting married, wasn't really stressed.
Laser Surgeries:2. Results:Basically to stop the bleeding from the spots. The first laser surgery stopped the bleeding, but it was in my best interest to have the Sub Macular surgery. The last laser surgery was done on Dec. 27, 2001. Last visit said it looked good. But to me nothing looks good if there is gray areas on my angiograms.
Sub Macular Surgeries:1. Results:Histo spot was removed and a little of my vision was restored, but it will never be 20/20 again. I may be having my second surgery soon. I have another appointment on Jan. 24, 2001. I would rather remove them as soon as they start, rather than wait. I feel the sooner taken out, the least amount of damage they can do to the eye. I could be wrong, but they really frustrate me!!
Other Medical Treatment:
Nutritional Supplements:Nothing other than vitamins. Recommended to take Advil twice a day to reduce swelling.
Vision Products Used:No.
Additional Comments:Anyone experiencing the same symtoms and are having trouble dealing with them please e-mail me. I am 28 yrs old and having a hard time with this. I just feel like this should not be happening to me and really want it to stop. The first time this came up in 99 I did not understand. About 3mnths ago I notices another spot. Called my specialist (Dr. Breaud w/ VRI) and went see him sadly I have a lot more spots. I only have 2 spots that are going to the center of my vision. There are about 6-8 smaller spots around the eye. I sadly just imagine the worst and hope for the best. Good luck to everyone dealing with this and best wishes that new technology will help us all!!! At least there is good info on these internet site for Ocular Histoplasmosis.
Date: -
Name:ellen kenter. Email: <ekenter@dds.nl>
Location:hoorn, Noord-holland The Netherlands
Date of First Histo Occurence:nov 2000
Affected Eyes:right eye
Other Stresses at Those Times:I had trouble sleeping.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:no
Nutritional Supplements:no
Vision Products Used:no
Additional Comments:I try to keep myself as healthy as possible by eating healthy ans exercising. I am starting a internet-site for people in holland with POHS: huizen.dds.nl/~ekenter/pohs if you are Dutch and have pohs, please contact me ekenter@dds.nl
Date: -
Name:Al. Email: <alfoizuddin@hotmail.com>
Location:London, Greater London UK
Date of First Histo Occurence:February 1997
Affected Eyes:Both
Other Stresses at Those Times:
Laser Surgeries:non. Results:
Sub Macular Surgeries:non. Results:
Other Medical Treatment:
Nutritional Supplements:used to take bluberry and bright eye supplement and acquired a taste for spinach
Vision Products Used:no
Additional Comments:I am 25 years old. My retinal condition is not properly diagnosed yet, but having read other peoples stories I think my condition is similar to histo. At the age of 20,after five month of living in university halls, sharing a room with another student, I noticed a slight peripheral blind spot in my right eye. I decided to visit my optician who told me she couldnt see anything unusual except a minor scar on my right retina. She referred me to my doctor. First specilist told me that there was nothing wrong and the blind spot was related to my short sightedness. Gradually my eye sight got worse, central vision got blurry and I saw straight lines bent; the doctor noticed an inflammation and reffered me to London Morefield Eye Hospital. I was told I have chorioretinal scars in both eyes, that the eyes are stable and have healed up. They couldnt arrive at a diagnosis because the scarring is very unusual. They said its similar to 'serpaginous', and also a hereditary disease EDS (Ehler Danloss Syndrome) as I have a lot of stretch marks and have supple joints. However There isnt a family history. Currently my left eye is completely functional, though it has a peripheral blindspot; my right eye has a peripheral blindspot like the left eye and also very bad central vision so that I cant read, or recognise faces with just the right eye. My sight has been stable for the last two years or so. Though this condition doesnt stop me from doing anything, it has had a terrible psychological toll on me. Unlike most other people, I never consciously felt a sense of alarm, fear or anything else I am supposed to feel. I dont discuss it with anyone, though a couple of people know including my mum. I know that if my left eye deteriorates to the level of my right eye I wouldnt be able to read at all and would struggle writing or typing. I think I have put a lot of things on hold, and I have been waiting for the last 4 years to see what happens to my remaing vision. I easily fall into a state of depression, and feel demotivated.
Date: -
Name:Kit. Email: <kits@txucom.net>
Location: TX USA
Date of First Histo Occurence:1952/1981 first eye problem
Affected Eyes:Both
Other Stresses at Those Times:Hypo-thyroidism probably at time of original pulmonary and eye infection. Going thru divorce at time of first eye problem. In a time of general life stress at time of 2nd eye problem. Everything OK at time of 3rd eye problem - except that it occurred to me after it develpoed that I had been lofting a lot of boxes of books. I wonder if the strain caused the leakage. How dumb of me. Though I have had this disease for many years, I have not been told much of anything about it and am just now beginning to learn via the internet.
Laser Surgeries:2. Results:1st one, with standard laser; recovered 20/20 vision in that eye. 2nd one with TTT only three weeks ago; have recovered one line (to 20/40) and good general improvement.
Sub Macular Surgeries:None. Results:
Other Medical Treatment:For hypo-thyroidism, began at about age 33.
Nutritional Supplements:Not for a while but am getting back into them.
Vision Products Used:Occasionally a magnifying glass to read standard small print.
Additional Comments:Without planning to, I posted my story in response to another post somewhere in a topic list here! The pulmonary hist list, I THINK! Or maybe occular. I am new to the site today and am just now learning the ropes!
Date: -
Name:Marla
Location:Mansfield, Tx USA
Date of First Histo Occurence:Nov 1999
Affected Eyes:right
Other Stresses at Those Times:Right before taking trial of steroids, found I was type 2 diabetic.
Laser Surgeries:1-Dec 2001. Results:Pictures show some leakage, but will wait another 6 wks to check. Will see what happens then.
Sub Macular Surgeries:1. Results:Membrane was removed, but lost my central vision due to extensive scar tissue.
Other Medical Treatment:none
Nutritional Supplements:nothing more than a multi vitamin.
Vision Products Used:Just my regular glasses (bi-focals) that I have have worn for about 15 yrs.
Additional Comments:This is really scary for me. The thought of this spreading to my good eye, and the possibility of losing my sight completely, scares me to death. I try not to think that far ahead, but after reading what everyone has written I really don't see a whole of rejoicing in the future, but my family and I will just have to ride it out and hope for the best. It really does help to know that others have the same problems and that none of us are alone.
Date: -
Name:Marla
Location:Mansfield, Tx USA
Date of First Histo Occurence:Nov 1999
Affected Eyes:right
Other Stresses at Those Times:Right before taking trial of steroids, found I was type 2 diabetic.
Laser Surgeries:1-Dec 2001. Results:Pictures show some leakage, but will wait another 6 wks to check. Will see what happens then.
Sub Macular Surgeries:1. Results:Membrane was removed, but lost my central vision due to extensive scar tissue.
Other Medical Treatment:none
Nutritional Supplements:nothing more than a multi vitamin.
Vision Products Used:Just my regular glasses (bi-focals) that I have have worn for about 15 yrs.
Additional Comments:This is really scary for me. The thought of this spreading to my good eye, and the possibility of losing my sight completely, scares me to death. I try not to think that far ahead, but after reading what everyone has written I really don't see a whole of rejoicing in the future, but my family and I will just have to ride it out and hope for the best. It really does help to know that others have the same problems and that none of us are alone.
Date: -
Name:Marla
Location:Mansfield, USA
Date of First Histo Occurence:
Affected Eyes:
Other Stresses at Those Times:
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Susan Waggoner. Email: <mwaggoner@mmcable.com>
Location:DelCity, OK USA
Date of First Histo Occurence:July, 1998
Affected Eyes:Right
Other Stresses at Those Times:None
Laser Surgeries:None. Results:
Sub Macular Surgeries:None. Results:
Other Medical Treatment:
Nutritional Supplements:No
Vision Products Used:No
Additional Comments:Woke up on my 1st wedding anniversary with a blind spot in my center of vision. Went to my eye doctor and he sent me to a retinal specialist. He then said I had Viral Retinitis and sent me to have a Physical with a regular MD. Which revealed nothing but that I was in good general health. I dismissed everything and went about my way. Then I went to have my eyes checked again Dec 31, 01 and my eye doctor sent me again to the retinal specialist and he said that I had Histoplamosis and that it had scarred and is no longer bleeding. I will be going to my eye doctor every six months now because he said that I have changes that he wants to watch. I don't use my right eye because I cant read anything with the black spot in my center of vision. My peripheral vision is still okay but it is very dark and blurry. I was born in Pekin, Illinois left there when I was 19 and moved to California for 15 years and then moved to Albuquerque NM for 11 months and then moved to Oklahoma City and have been here for 4 years. I probably contracted this in Illinois. I have not noticed any ill health. Besides a cold now and then. I had pleurisy and bronchitis in Calif. So I can only guess as we all do. I am shocked that at my age I just wake up in the morning and I have limited sight in my right eye! Thank God there is no evidence of it in my left eye. I work a full time job and drive as though there is nothing wrong and I am thankful that after reading some of the experiences that I have no other problems with my vision. I wish you all good luck with your vision. After losing half of mine I am thankful for what I have left and plan to take action if I have any more problems with this disease. I still have trouble believing it happened to me! Good Luck to you all.
Date: -
Name:Pam Miller. Email: <nomad@sockets.net>
Location:Jefferson City, Missouri USA
Date of First Histo Occurence:September, 2000
Affected Eyes:no, just some "spots"
Other Stresses at Those Times:New job. I believe I had undiagnosed lung histoplasmosis that was never treated, although I went to the doctor many times. I got "the flu" and then had chest pain that was very hard to define. Numerous tests were performed, looking for heart, lung, or gall bladder problems but nothing was found. I had trouble breathing and generally felt terrible. X-rays didn't show anything, but I had them early on, maybe something would show now. The pain didn't go awau until I started taking MSM (2,000 mg/day, Sams Club is the cheapest source for it.) It didn't click that I'd had histo until the spots were found in my eyes that hadn't been there on my previous eye exam.
The pain in the chest moved around, but it was a generalized aching and a sensation of a heavy weight on my chest. I could hardly get around.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:My vision wasn't affected because the spots were in the outside part of the retina.
Additional Comments:I believe I got it from excavating a hole to repair a leak in my basement and also pulling the drywall off the inside of the basement wall. There was a great deal of dust and mold involved. I understand histo can live in soil.
Date: -
Name:Anne Johnson. Email: <janne@mindspring.com>
Location:East Flat Rock, North Carolina USA
Date of First Histo Occurence:Summer 01
Affected Eyes:Right mostly; histo spots in left too
Other Stresses at Those Times:Depression. Job related stress.
Laser Surgeries:. Results:
Sub Macular Surgeries:I'm getting ready to have one the 27th of November. Results:
Other Medical Treatment:Prednisone 40mg.
NO significant improvement in the
right eye.
Nutritional Supplements:No.
Vision Products Used:reading glasses help magnify things large print books
Additional Comments:The thought of submacular surgery The thought of submacular surgery The thought of submacular surgery I'm scared of the surgery!
Date: -
Name:Jean Kraus. Email: <Jean9117@aol.com>
Location:Cincinnati, Ohio/USA USA
Date of First Histo Occurence:12/17/1999
Affected Eyes:Both scarred/right bad large spot in the fovea.
Other Stresses at Those Times:High blood pressure for 37 years, kidney's gave up when I had child #3 in 33 months and I have been taking Prinvil/Zestril for this for the last ten years. Lots of stress. Divorced and the holidays have never been a good time for me, even when I was married and had small kids. Have had pyschiatric help, counselling etc. but a couple of good quotes describe me best; one from my regular doctor"if you didn't have something to worry about you would worry about why you weren't worrying"; one of the shrinks " if you were half as important as you think you are you should be running a small county" Uptight kind of person.
Laser Surgeries:2. Results:Thumb size scar in right eye, fairly good vision until cateract surgery in left eye in
November, 2000. Foggy vision and a new vessel along side the first one. 2nd surgery 9/12/01 the pictures look great, good scarring no leakage but still foggy vision. Better in low light.
Sub Macular Surgeries:????. Results:
Other Medical Treatment:Two cataract surgeries, left eye March 1999, right eye November, 2000. Temporary Lachrimal plugs March of 2001 (4) then permanent in April 2001 (2). Very dry eyes. Scratched cornea in non affected eye after 1st surgery from just opening my eyes.
Nutritional Supplements:No
Vision Products Used:Changing fonts on my computer, but only to 12 point. I do accounting work so my eyes are under severe strain at times. Old lady nearsigted? (can't see close up) Walgreens special glasses. Still driving abeit less and not at night. Still able to work (thank God for that) No vision problems at all until age 44.
Additional Comments:64 Year old white female, divorced, three grown, married kids. Very independent and this disease is wreaking havoc with my perceptions of where I want to go from here and how I am going to manage to get there without becoming someone's "dependent" (thats a word that strikes fear into my soul! The blink site looks as though it might be just what I am looking for. Please feel free to e-mail me just to talk even after reading some of the case histories I am beginning to think I am dealing better than I thought. My heart aches for the many very young people here. I was lucky (never thought I would be saying that1) I ad so very many good vision years. You just don't appreciate what you have until it is gone or going.
Date: -
Name:Jean Kraus. Email: <Jean9117@aol.com>
Location:Cincinnati, Ohio/USA USA
Date of First Histo Occurence:12/17/1999
Affected Eyes:Both scarred/right bad large spot in the fovea.
Other Stresses at Those Times:High blood pressure for 37 years, kidney's gave up when I had child #3 in 33 months and I have been taking Prinvil/Zestril for this for the last ten years. Lots of stress. Divorced and the holidays have never been a good time for me, even when I was married and had small kids. Have had pyschiatric help, counselling etc. but a couple of good quotes describe me best; one from my regular doctor"if you didn't have something to worry about you would worry about why you weren't worrying"; one of the shrinks " if you were half as important as you think you are you should be running a small county" Uptight kind of person.
Laser Surgeries:2. Results:Thumb size scar in right eye, fairly good vision until cateract surgery in left eye in
November, 2000. Foggy vision and a new vessel along side the first one. 2nd surgery 9/12/01 the pictures look great, good scarring no leakage but still foggy vision. Better in low light.
Sub Macular Surgeries:????. Results:
Other Medical Treatment:Two cataract surgeries, left eye March 1999, right eye November, 2000. Temporary Lachrimal plugs March of 2001 (4) then permanent in April 2001 (2). Very dry eyes. Scratched cornea in non affected eye after 1st surgery from just opening my eyes.
Nutritional Supplements:No
Vision Products Used:Changing fonts on my computer, but only to 12 point. I do accounting work so my eyes are under severe strain at times.
Additional Comments:64 Year old white female, divorced, three grown, married kids. Very independent and this disease is wreaking havoc with my perceptions of where I want to go from here and how I am going to manage to get there without becoming someone's "dependent" (thats a word that strikes fear into my soul! The blink sitelooks as though it might be just what I am looking for.
Date: -
Name:Laura Crase. Email: <mcrase1@midsouth.rr.com>
Location:Bartlett, TN USA
Date of First Histo Occurence:September , 1999
Affected Eyes:left, 1999; right, 2001
Other Stresses at Those Times:started to experience TIA (temporary strokes) during the time POHS was diagnosed
Laser Surgeries:1. Results:hot laser - could not stop leaking near center vision and lost central vision in left eye 4 months later.
Sub Macular Surgeries:. Results:
Other Medical Treatment:
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Sherri. Email: <Jettswife@aol.com>
Location:Wills Point, Texas USA
Date of First Histo Occurence:
Affected Eyes:Both
Other Stresses at Those Times:Just the usual stress of every day life
Laser Surgeries:none. Results:
Sub Macular Surgeries:none. Results:
Other Medical Treatment:none
Nutritional Supplements:Vitamins
Vision Products Used:I currently wear glasses and have gotten a new prescription with bifocals. Since my last eye exam 2 years prior, my eyesight has changed significantly.
Additional Comments:What I don't understand is according to everything I have read about this disease, it affects people who live in the Mississippi & Ohio River valleys. I have never lived there. Then there's the thing about birds. I just want to know is there any other way A person can get this disease or are these the only 2 ways. When I was young, I spent 2 weeks every summer in Iowa (4 years in a row) that's the ONLY place I can think of that I contracted this disease. Does anybody know how long it takes to catch it?
Date: -
Name:Gail. Email: <gam500@aol.com>
Location:Scottsdale, AZ USA
Date of First Histo Occurence:10/92
Affected Eyes:both lungs and liver
Other Stresses at Those Times:At the time I was diagnosed, I was attending college in Cincinnati, Ohio...I had various types of stresses including; school, job, parents recently divorced, and obesity...today, like everyone else, I have many many stresses varing from day to day.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:various surgeries and biopsies...I was also put on a couple different steroids and had also developed asthma and chronic bronchitis so treatments have varied.
Nutritional Supplements:I currently take B-Supplements and a multi-vitamin.
Vision Products Used:
Additional Comments:My symtoms are subdued for now...however, I am more prone to having bronchitis and other types of similiar cough and flu like illnesses. When I lived in Cincinnati, my doctor (who I highly recommend) was Dr. Robert Baughman...out of the University of Cincinnati Medical Center...he was a specialist...I would be interested in hearing from anyone regarding this especially those who had histo on the lungs first and then it progressed to the eyes....within the past year I have had to use glasses, but I was tested and it did not show up in my eyes at this time.
Date: -
Name:sue haptonstahl. Email: <susiehap@aol.com>
Location:Springfield, IL USA
Date of First Histo Occurence:2/01
Affected Eyes:left
Other Stresses at Those Times:I was hit by a student 2 weeks prior to first laser surgery. I immediately noticed distorted vision, but thought it was glasses being bent and had them adjusted twice before I realized there was a blind spot. Had laser surgery the day it was diagnosed and was free from leaking until august this year. had laser againn and now in October, am needing PDT to save central vision in left eye. As a teacher, I know stress! Also, my mother is having surgery for colon cancer which was diagnosed in August.
Laser Surgeries:3. Results:trouble free for 6 months, now have 3rd leak from same scar going into ceentral vision in left eye
Sub Macular Surgeries:. Results:
Other Medical Treatment:saw Dr. Matt Thomas in St. Louis for second opinion after 1st surgery. Seemed to be in agreement with first doctor.
Nutritional Supplements:
Vision Products Used:
Additional Comments:
Date: -
Name:Sally L Palmer. Email: <Sallyslpalmer@aol.com>
Location:North Vernon, In USA
Date of First Histo Occurence:1978
Affected Eyes:left and then right
Other Stresses at Those Times:no stress other than working and raising my family
Laser Surgeries:10. Results:one laser in left eye i have no central vision in that eye. i have had nine lasers in my right eye.
Sub Macular Surgeries:none. Results:
Other Medical Treatment:i was on predisone for several years. i also had two predisone shots in my left eye with no results.
Nutritional Supplements:no
Vision Products Used:right now i'm using magnifying glasses with a flashlight.
Additional Comments:i have not been able to work since April, 2001 or have not been able to drive. i would like to be able to see better so i could read and see my computer better. i guess my next step is to have the submacular surgery.
Date: -
Name:Jill. Email: <ocrush@nc.rr.com>
Location:Raleigh, North Carolina USA
Date of First Histo Occurence:October 1978
Affected Eyes:Left eye
Other Stresses at Those Times:Other than serving in the Air Force stationed in Naples, Italy, I really didn't find myself under any unusual stress.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:Steriods prescribed (about 18 months later) initially high dosage decreasing dosage over 4 months.
Nutritional Supplements:Nothing other than daily vitamin supplements.
Vision Products Used:No.
Additional Comments:Born in Buffalo; however, moved to Florida in late 1969. Few later I visited several times to the Mississippi River. Diagnosed in 1978; however the doctor's in Naples, Italy and Wiesbaden, Germany didn't do anything for me (was stationed in Naples Italy from 1977-1980). Once back to the U.S., I was a patient at Wilford Hall at Lackland AFB where I came upon a brillant opthamologist (Dr. Jack Sipperly) and a great staff of young and upcoming opthamologists. Was seen by the staff at Wilford Hall from 1980 - 1985. A volunteer "test" case patient, I hope that my numerous flurosein procedures & photo's and well as documented case helped with medical research, technology, and in the general education of eye professionals. Although I was initially given dosages of prednisone, not much else was available to me for regained eyesight. My faith and prayers to God sustantained me along with fierce determination through positve affirmations that I would regain my sight (partial only, but that's better than none) and I know I had the best eye care professionals on my side. Today I have the onset of cataracts and additionally suffer from macular degeneration, but I'm still determined to succeed in my quest for quality of life through better vision. God's blessings to all!
Date: -
Name:Jill. Email: <ocrush@nc.rr.com>
Location:Raleigh, North Carolina USA
Date of First Histo Occurence:October 1978
Affected Eyes:Left eye
Other Stresses at Those Times:Other than serving in the Air Force stationed in Naples, Italy, I really didn't find myself under any unusual stress.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:Steriods prescribed (about 18 months later) initially high dosage decreasing dosage over 4 months.
Nutritional Supplements:Nothing other than daily vitamin supplements.
Vision Products Used:No.
Additional Comments:Born in Buffalo; however, visited several times to the Mississippi River.
Date: -
Name:SARA. Email: <SADDENT@HOTMAIL.COM>
Location:BEVIER, MO USA
Date of First Histo Occurence:diagnoses 9/4/2001
Affected Eyes:right eye
Other Stresses at Those Times:no, just the normal everyday things. taking care of home and family.
Laser Surgeries:. Results:
Sub Macular Surgeries:. Results:
Other Medical Treatment:have a watering/drainage comming from right eye, dont no if it is associated with histo or not. dr. did not ansew my ??'s. put me on zaditor drops
Nutritional Supplements:started taking centrum vitamins yesterday after reading posts, from others with histo
Vision Products Used:just have my glasses. have had glasses since 3rd grade.
Additional Comments:i am really confused about this diagnosis. the specilist did not say if there is treatment for this, or what will happen now and later, did not answere my ??s and i am totally dumb and very lost on this diagnosis. i dont no what will happen to my eyes or any thing. if any one could give me some type of information, any at all, on this pohs, it would really be apprecieated. you can email me at saddent@hotmail.com. would like to chat with someone or email with someone that has the same diagnoses as i do. i really need some insight on this. have records from my eyes clear back til i was 13 and have had to have glasses almost everyyear since i was in third grade. last year opt. toldme my eyes were 20/400 this year he is telling me they are 20/1200. so please if any one can help me or inform me on this histo thing i would greatly appreciate it. i am only 29 and my greatest fear is going blind and not seeing my 9 yr old daughter grow up.
Date: -
Name:CHRISTINE. Email: <MIDNIGHT10@MSN.COM>
Location:CLEVELAND, OHIO USA
Date of First Histo Occurence:8/2001
Affected Eyes:LEFT;SPOTS IN BOTH
Other Stresses at Those Times:VERY STRESSED OUT AND DEPRESSED BERFORE THE PROBLEM STARTED
Laser Surgeries:1. Results:ONLY BEEN 2 WEEKS SO FAR BLEEDING HAS STOPPED. BUT VISION IS STILL DISTORTED AND I HAVE A BLIND SPOT
Sub Macular Surgeries:. Results:
Other Medical Treatment:NONE SO FAR
Nutritional Supplements:STARTED TAKING EYE VITIAMS
Vision Products Used:NO
Additional Comments:THIS IS A VERY TERRIFING THING. I HAVE ALWAYS HAD PERFECT VISION AND THEN ONE DAY I WOKE UP AND MY EYES SEEMED A LITTLE BLURRY. I THOUGHT I NEEDED GLASSES. AND A COUPLE OF DAYS LATER I NOTICED THAT THE VISION IN MY LEFT EYE WAS DISTORTED. WENT TO THE DOCTOR AND HE TOLD ME I HAVE OCCULAR HISTOPLASMOSIS. THERE WAS BLEEDING IN MY LEFT EYE NEAR THE CENTER AND HE DIDNT NO IF HE COULD STOP IT. HAD LASER SURGERY. HAVE ANOTHER SPOT IN MY LEFT EYE AND ONE IN MY RIGHT EYE. DOCTOR SAID THAT HE CANT DO ANYTHING ABOUT THEM UNLESS THEY START BLEEDING. ANYONE FEELING ALONE PLEASE FEEL FREE TO WRITE ME. THIS IS REALLY SCARY AND I KNOW I NEED PEOPLE TO TALK TO THAT UNDERSTAND WHAT I AM GOING THROUGH.
Date: -
Name:peggy. Email: <peggy_west_2000@yahoo.com>
Location:buffalo, USA
Date of First Histo Occurence:3/99
Affected Eyes:left
Other Stresses at Those Times:had JUST quit smoking 4 days prior; taking zyban, which i noted someone else at this site mentioned... coincidence?
Laser Surgeries:1. Results:was follow up to 2 other surgeries. did stop the regrowth of the membrane.
Sub Macular Surgeries:1. Results:membrane was successfully removed. unfortunately, the bleeding/scarring had done enough damage that i had lost rpe.
Other Medical Treatment:physician who performed submacular surgery to remove membrane also performed a retinal shift. As i had lost the healthy tissue in the exact center of vision, dr. recommended shifting the retina so that macula would lie over an area of healthy tissue rather than the damaged area. also successful. required a scleral buckle during this operation due to some tearing in weak areas of retina. this was done 1st week of 4/99 (1 week after membrane removed). laser surgery required in 7/99 as regrowth occurring. did not decrease central vision because macula now in different place. cataract surgery in 8/99 due to trauma of 2 surgeries within a week and necessary post-op gas bubbles. also have had depomedral SP? injections in both eyes for subretinal inflammation; 3x on prednisone ; i beg for the injections if at all possible: a day or 2 of discomfort is much more tolerable than the psycho days on prednisone.
Nutritional Supplements:no. try to eat lots of dark green for lutien, don't want to have to deal with a different problem a few years down the road. was 29 when this hit me.
Vision Products Used:thankfully, none necessary. after 3 surgeries, laser treat, and a few bells and whistles in prescrip.(worn glasses for near-sightedness since 13) i can now see 90% of 20/20 line on chart. with a slight turn to the right i can see what remains.
Additional Comments:i'm amazed at the number of entries here! i've probably strained my eyes, reading so many. i praise those who are making it through this. i also praise each and every physician who has helped me get to where i am now. drs. hanni, the optom. i see for eyeglasses, who i first went to with "something just isn't right, things that should be straight are bent", on to dr schraut who recommended if travel was not an issue, to see a dr. mathew thomas,barnes retina institute, st. louis (some 300 miles from my home.) though complications and recurrences required many more trips to his office than i had imagined(I'll be paying credit card bills for hotels, gas, medical expenses) for years, i'm sure, but i'm very glad i chose the route i did. though not perfect, i think my sight is as close as you can get considering. i have worked a full-time and part-time job for the past year and a half to keep up with it all. my joke is who needs home ownership or a sports car, i have the most expensive eye in the world. what never goes away is the f word--you all know it-- FEAR. i have inactive spots in my rt eye also. will i wake up to a bent world again? will i grow another membrane under the place my macula is now in my left eye? will i ever work just one job again and not know what to do with FREE TIME???? i much admire those who have gone through this who are also raising children, my biggest worry was where to kennel my dog for the few days i was gone. to those out there who have lost central vision, get opinions (2ND,3RD,1001) on option of shift. without it i would have been 20/200ish ,instead of 20/20ish. would like personal e mail from others out there, i don't know anyone, personally, who understands what this disease is all about , no matter how many times you explain it, only those who've lived it will understand.
Date: -
Name:Kaaren. Email: <onewyldrose@earthlink.net>
Location:Hollywood, Florida USA
Date of First Histo Occurence:December 2000
Affected Eyes:not eyes, lungs
Other Stresses at Those Times:I am over 60 and disabled and there is a lot of stress all the time. Last year was the lung surgery, then I had a fire in my home. Things still not back to normal.
Laser Surgeries:. Results:n/a
Sub Macular Surgeries:. Results:n/a
Other Medical Treatment:I'm being treated for arthritis, and various other nagging complaints of growing
older. :) I occasionally take prednisone for pain. I did read somewhere on the
web that the drug Mevacor(?) for high cholestral contains lovestantin, and that
can cause histoplasmosis to flare up. Only found the one reference. Anyone else
hear/see that?
Nutritional Supplements:I take Vitamin B-12, min 1000mcg for circulation, calcium, and a multivitamin
each day.
Vision Products Used:Have worn glasses since 3d grade (come to think of it, when I was playing in the chicken coop) for extreme nearsightedness.
Additional Comments:I am hoping someone who had lung histo and subsequently discovered the occular type will see this and write me. I am not quite sure what symptoms of occular histo there are, but sure want to be on the lookout. Thanks for any answers, and God Bless you all. This is terrible stuff that not too many doctors have even heard of, much less done anything about!!
Date: -
Name:Margaret Della Porte. Email: <zelda105@aol.com>
Location:Lindenhurst, New York USA
Date of First Histo Occurence:6/71
Affected Eyes:rt. eye
Other Stresses at Those Times:I was 19 yrs old working in the Delivery room of a local hospital. I woke up one morning and it looked like I was looking through rose colored glasses in parts of my field of vision. It proceeded to darken until the entire center of vision was gone.
Laser Surgeries:one. Results:I developed a detached retina in '79 he felt that the scars weakened the retina.
Sub Macular Surgeries:2. Results:I had cryosurgery twice '79 and '81 it did not change my vision, they felt I had developed retinal tears and was leaking vitreal fluid.
Other Medical Treatment:In 1971 when the symptoms first occurred, they didn't know what to call it but they put me on large doses of