I have damaged retinas from ocular toxoplasmosis (and so do my triplet siblings, but they developed symptoms years after me). I don’t know when I contracted it, but I was young enough not to remember the initial flare ups and I don’t think I ever had treatment because the damage was done by the time it was discovered and I haven’t had any flare ups since. I didn’t know that injections are a form of treatment. My brother was the only one who received treatment for it and he got antibiotics and steroids for a few weeks to minimise the damage, which seemed to work quite well. I was told when I was in primary school and going to an eye hospital for regular checkups that I might be blind as an adult, but so far so good. I have blind spots, one of which is large and overlaps my focal point, so I can ‘see’ it, but most people think I have normal vision, although I might read slightly slower and I’m not good at sports that require good peripheral vision and depth perception (or maybe it’s just an excuse for clumsiness. It works). How is your vision now?
I m a toxoplasmic petient since I don't know time r periods.l lost vision iny left eye.but no problem in right eye.now I losing my memory much more.so l lost of my job also. Bz they don't knows my problems and memory lack.now I'm 38 But i driving do everything.m from india.any body hav the same ?any treatment now pls inform me 9567302111.
Hi , just like you I was born with it , I have no central vision in my left eye , not sure when that was affected , we found that out when I was 3 years old . I’ve only had 2 flare ups , one when I was 13 and another when I was 23 In my good eye ( the right ). I just turned 50 and still have vision and can drive and I have a successful career., I know what your going through being so young , I hope my story helps you, it may never flare up again in your lifetime
Hi Julia! I have the same thing as you! The last few days my right eye is feeling like I’m blind, I went to drs yesterday and my toxo is causing this, I thought maybe it was my retina tearing again but it’s not thank god🙏. Tomorrow going to the specialist to see what they say. I found out I had this when I was 23 from regular eye appointment and never had any issues until my retina tore and now this!!
Julia Wilcox thanks Julia! My retina must have torn from the toxo is what I’ve heard, I’m on drops for my eye and antibiotic for two weeks. Thursday I have a angiogram then a follow up the next week after that!! How are you feeling?
Tracy DiPalma oh what antibiotics are you on? I get angiograms often and I’ve gotten a lot better with them but I used to almost pass out while getting them. My eyes are ok right now, one has hemorrhaged but it’s stable for now. I hope all goes well with your appointments
Julia Wilcox hello Julia, the antibiotics are called Sulfatrim DS and the drops are Prednisolone. What does the angiogram do and how did it help? I had one done when I had the hole in my retina
my "good eye"(right eye) as i called it has recently became active. i am now on the 18 pills once again .. previous damage had been done to my left eye when i got it at 14 , it has not been active since i was 14 :( its so scary. i could deal with one eye but now in both i did not honestly think it would . just scary to think what the years will bring will they get worse? who knows :(
Allie Sis it is most likely in her left eye too but not active. The doctors can’t see the actual parasite so if it is not active they would not know right away. But she should get check ups regularly!
@@Thatgirljules2 oh so this is the reason every time doctors check her two eyes when she is going, it is very bad that there is no way to prevent it to not become active..😔 Thank you very much for your video and reply, it was very good and helped me very much..♥️
Allie Sis of course! If your relative has any questions too just have her ask me! I always wanna help people understand what this is and prevent others from getting it
Thank you so much for sharing your story! I have been googling ocular toxoplasmosis for the past week. I went in for a retina scan last week because I am seeing a flashing light in one eye. I was afraid I had a detached retina but they found that wasn't the case. They did find scars on both of my retinas 6 on the right and 2 on the left. They referred me to a retina specialist to rule out toxoplasmosis but my appointment isn't for two more weeks. It is crazy to me that toxoplasmosis is so common yet I can't find much information about it. How do you know when toxoplasmosis becomes active again?
ImDailyBlessed of course! I’m here to answer questions and just inform others! I’m not a doctor so I can only speak from experience but it is better than nothing. Like you said it is so hard to find information on it. I hope your appointment goes well and it sounds like your case is not too serious if you do have toxo, just something to keep in the back of your mind. If your scars are far from your line of vision it should be easy to manage and not as scary. There really is not any way to keep it from becoming active. I try to eat foods that help keep inflammation down. The doctors say the worst of the disease is when your body goes through a lot of hormonal changes so I try not to over stress. There are medications too, to keep it from becoming active which are great but I am allergic to them. But there is no way for the parasites to ever leave your body for good.
@@Thatgirljules2 just an update in case you were curious. I had my appointment with the specialist and was told I have POHS Presumed Ocular Histoplasmosis... similar to toxoplasmosis but caused from fungal spores in the soil in the region of the US where I grew up. I go back in two months to make sure it is not active. If it is I will have to be put on steroids or steroid shots. Thanks again for sharing your story.
ImDailyBlessed I have heard of this before and I hope you get the best care! It can be really hard to have an eye disease or any disease that is not common because you really feel alone. But don’t worry you are not alone and can always talk to me if you want.
I’m really interested in more information on this. I am 36 and when I was pregnant with my first child the doctor said that my bloodwork showed antibodies for toxoplasmosis. So crazy because I never even knew I had it. I have been fighting chronic eye pain for the past 4/5 years. Also joint pain, thyroid disease. I’m wondering if this could be causing the eye pain. Doctor just diagnosed me with migraines.
Kristi Beeson having antibodies usually means that you have gotten the disease at some point in your life, but what really matter is when in your life. I’m not a doctor but I can offer my advice, so what I would do is go to a retinal specialist and have them look at your eyes. If you ever had disease in your eyes in the past they would be able to tell. I think around 66% of people get this parasite in their lives but it acts just like a normal virus if you are not pregnant. If you are then it can go to your baby and that is what happened with me. I know this was a long answer but if you have any other questions just let me know! I hope this helped!
Hi! I have shared your video on my Twitter: @NegarRiahi...Please explain for me what is exactly the treatment if you have this toxoplasmosis in your brain and behind the eyes? I have Litarex Lithium Citrate as treatment forever. But I want to get rid of the parasites somehow. I have Bipolar Disorder but I know that is because of the parasites existing in my brain that I get high.....
Negar Riahi I’ve only had it in my eyes and have only had treatment in my eyes which includes injections into my eyes. There is no way to get rid of the parasites I have.
Hi I was recently diagnosed with ocular toxoplasmosis I have perfect vision but have inflammation in my eyes I’m on 2 different meds to supposedly cure it
Yakira Marcano there’s almost no information out there so it is really scary but since I am allergic to the sulfa drugs I can only take the clindamyson. My vision definitely has changed since it started and there really is no way to keep it sleeping. I would say keep your hormones leveled and keep a good diet and things like that so your body isn’t inflamed but I’m not a doctor, that is just what I do. Do you get the injections in your eyes?
I have damaged retinas from ocular toxoplasmosis (and so do my triplet siblings, but they developed symptoms years after me). I don’t know when I contracted it, but I was young enough not to remember the initial flare ups and I don’t think I ever had treatment because the damage was done by the time it was discovered and I haven’t had any flare ups since. I didn’t know that injections are a form of treatment. My brother was the only one who received treatment for it and he got antibiotics and steroids for a few weeks to minimise the damage, which seemed to work quite well. I was told when I was in primary school and going to an eye hospital for regular checkups that I might be blind as an adult, but so far so good. I have blind spots, one of which is large and overlaps my focal point, so I can ‘see’ it, but most people think I have normal vision, although I might read slightly slower and I’m not good at sports that require good peripheral vision and depth perception (or maybe it’s just an excuse for clumsiness. It works).
How is your vision now?
I m a toxoplasmic petient since I don't know time r periods.l lost vision iny left eye.but no problem in right eye.now I losing my memory much more.so l lost of my job also.
Bz they don't knows my problems and memory lack.now I'm 38
But i driving do everything.m from india.any body hav the same ?any treatment now pls inform me 9567302111.
Hi , just like you I was born with it , I have no central vision in my left eye , not sure when that was affected , we found that out when I was 3 years old . I’ve only had 2 flare ups , one when I was 13 and another when I was 23 In my good eye ( the right ). I just turned 50 and still have vision and can drive and I have a successful career., I know what your going through being so young , I hope my story helps you, it may never flare up again in your lifetime
U gave me Hope ❤️
I hope you’re better ♥️✨
Hi Julia! I have the same thing as you! The last few days my right eye is feeling like I’m blind, I went to drs yesterday and my toxo is causing this, I thought maybe it was my retina tearing again but it’s not thank god🙏. Tomorrow going to the specialist to see what they say. I found out I had this when I was 23 from regular eye appointment and never had any issues until my retina tore and now this!!
Tracy DiPalma wow I’m so sorry! How did your retina tear?
Also I hope your appointment went well!
Julia Wilcox thanks Julia! My retina must have torn from the toxo is what I’ve heard, I’m on drops for my eye and antibiotic for two weeks. Thursday I have a angiogram then a follow up the next week after that!! How are you feeling?
Tracy DiPalma oh what antibiotics are you on? I get angiograms often and I’ve gotten a lot better with them but I used to almost pass out while getting them. My eyes are ok right now, one has hemorrhaged but it’s stable for now. I hope all goes well with your appointments
Julia Wilcox hello Julia, the antibiotics are called Sulfatrim DS and the drops are Prednisolone. What does the angiogram do and how did it help? I had one done when I had the hole in my retina
Julia Wilcox it’s awful to lose your eyesight isn’t it!! Such a strange thing!! I hope we both will be ok and fight this 😘😁❤️
my "good eye"(right eye) as i called it has recently became active. i am now on the 18 pills once again .. previous damage had been done to my left eye when i got it at 14 , it has not been active since i was 14 :( its so scary. i could deal with one eye but now in both i did not honestly think it would . just scary to think what the years will bring will they get worse? who knows :(
Did you know u had it in Both eyes ? Or u found out when it became active ?
One of my relatives also has got toxoplasmosis in just her right eye 😥, do think her left eye also will get it?
Allie Sis it is most likely in her left eye too but not active. The doctors can’t see the actual parasite so if it is not active they would not know right away. But she should get check ups regularly!
@@Thatgirljules2 oh so this is the reason every time doctors check her two eyes when she is going, it is very bad that there is no way to prevent it to not become active..😔
Thank you very much for your video and reply, it was very good and helped me very much..♥️
Allie Sis of course! If your relative has any questions too just have her ask me! I always wanna help people understand what this is and prevent others from getting it
Omg you're so cute!!!
Thank you so much for sharing your story! I have been googling ocular toxoplasmosis for the past week. I went in for a retina scan last week because I am seeing a flashing light in one eye. I was afraid I had a detached retina but they found that wasn't the case. They did find scars on both of my retinas 6 on the right and 2 on the left. They referred me to a retina specialist to rule out toxoplasmosis but my appointment isn't for two more weeks. It is crazy to me that toxoplasmosis is so common yet I can't find much information about it.
How do you know when toxoplasmosis becomes active again?
ImDailyBlessed of course! I’m here to answer questions and just inform others! I’m not a doctor so I can only speak from experience but it is better than nothing. Like you said it is so hard to find information on it. I hope your appointment goes well and it sounds like your case is not too serious if you do have toxo, just something to keep in the back of your mind. If your scars are far from your line of vision it should be easy to manage and not as scary.
There really is not any way to keep it from becoming active. I try to eat foods that help keep inflammation down. The doctors say the worst of the disease is when your body goes through a lot of hormonal changes so I try not to over stress.
There are medications too, to keep it from becoming active which are great but I am allergic to them.
But there is no way for the parasites to ever leave your body for good.
@@Thatgirljules2 just an update in case you were curious. I had my appointment with the specialist and was told I have POHS Presumed Ocular Histoplasmosis... similar to toxoplasmosis but caused from fungal spores in the soil in the region of the US where I grew up. I go back in two months to make sure it is not active. If it is I will have to be put on steroids or steroid shots. Thanks again for sharing your story.
ImDailyBlessed I have heard of this before and I hope you get the best care! It can be really hard to have an eye disease or any disease that is not common because you really feel alone. But don’t worry you are not alone and can always talk to me if you want.
What's the injection called I have the same in one eye
I’m really interested in more information on this. I am 36 and when I was pregnant with my first child the doctor said that my bloodwork showed antibodies for toxoplasmosis. So crazy because I never even knew I had it. I have been fighting chronic eye pain for the past 4/5 years. Also joint pain, thyroid disease. I’m wondering if this could be causing the eye pain. Doctor just diagnosed me with migraines.
Kristi Beeson having antibodies usually means that you have gotten the disease at some point in your life, but what really matter is when in your life. I’m not a doctor but I can offer my advice, so what I would do is go to a retinal specialist and have them look at your eyes. If you ever had disease in your eyes in the past they would be able to tell. I think around 66% of people get this parasite in their lives but it acts just like a normal virus if you are not pregnant. If you are then it can go to your baby and that is what happened with me. I know this was a long answer but if you have any other questions just let me know! I hope this helped!
omg love your videos!!! so obsessed with you!!!! wish we could meet in person......
Hi! I have shared your video on my Twitter: @NegarRiahi...Please explain for me what is exactly the treatment if you have this toxoplasmosis in your brain and behind the eyes? I have Litarex Lithium Citrate as treatment forever. But I want to get rid of the parasites somehow. I have Bipolar Disorder but I know that is because of the parasites existing in my brain that I get high.....
Negar Riahi I’ve only had it in my eyes and have only had treatment in my eyes which includes injections into my eyes. There is no way to get rid of the parasites I have.
Hi I was recently diagnosed with ocular toxoplasmosis I have perfect vision but have inflammation in my eyes I’m on 2 different meds to supposedly cure it
Yakira Marcano no way! What medication is it?
Julia Wilcox Clindamycin Nd sulfameth/trimethoprim Since you’ve had it for a while what do you do to keep it sleep
Has your vision changed I’m so scared there’s not much info on this out there
Yakira Marcano there’s almost no information out there so it is really scary but since I am allergic to the sulfa drugs I can only take the clindamyson. My vision definitely has changed since it started and there really is no way to keep it sleeping. I would say keep your hormones leveled and keep a good diet and things like that so your body isn’t inflamed but I’m not a doctor, that is just what I do. Do you get the injections in your eyes?
Julia Wilcox no I haven’t got no injections in the eye when I start he said it was mild how long has it been for u