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thisiscrazy

By thisiscrazy
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thisiscrazy Newbie

thisiscrazy

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Posted

Hello everyone,

I was recently diagnosed with ocular herpes.  If you have it I feel your pain, if you don't I pray you never do.  While I haven't experienced vision loss yet I know this is a possibility and devastating emotionally.  I have kids, I can't go blind.   I refuse to accept this disease and will fight it daily.  I had many emotions as I endured the pain and light sensitivity but we must keep in mind that our diet is our greatest tool to defend against this virus.  Currently I am on Acyclovir and healing from swelling and very tender eyes with a maint regiment prescribed.  I must say that this has been an emotional time but reading through the forums I have gained hope and encouragement.   

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Tryingtobepositive2016 Honeycomb Member

Tryingtobepositive2016

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Hey,

Sorry to hear your news. Try to be positive. Being on here and having support really helps as you don't feel alone. You won't go blind you have beautiful kids to watch grow!! You should research olive leaf and Oregano oil. I've heard many people find this extremely effective keeping the virus at bay and some actually believe it's cured this shit virus. Stay strong and talk to the man upstairs about a cure one day for this so we can all be happy :-)

I'm a massive believer in natural medicine after my studies. I've heard and saw some pretty amazing things from little herbs. Do your research :-)

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Constant Diplomat Established Member

Constant Diplomat

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I read something about an IBS or upset stomach over the counter product called Tagamet that somehow keeps the virus latent. It was an unexpected 'side effect'.  A simple google will turn up the study. I've not gone down this road, haven't really gone down any roads, but I've read about a few things like this.

Check it out.

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Zazu2 Honeycomb Member

Zazu2

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Dear thiiscrazy.....

I am praying for you!  Yes, think positive!   I believe the answers are out there!  Look at the many medical breakthroughs in the last 100 years. I think HSV is doomed to die very soon! God bless you. And keep thinking positive.

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  • 4 weeks later...
diamondgirl Established Member

diamondgirl

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Hi!  I've had ocular herpes for 6 years now.  I haven't had any other kind of herpes, so I can't speak to that.  YES, it's a difficult thing to consider that blindness is a possibility, but remember it's a LOW possibility.  It's much more likely that if you stay on top of it and promptly seek medical care when you need it, the chances are much more likely that you will keep your sight for your lifetime.  I've had some vision loss, but have not had a relapse for about 5 years now.  I found through trial and error that my success is due to strict adherence to my regimen of prescription drugs, avoiding foods with arginine, and staying out of the sun as much as possible.  Too much sun exposure ANYWHERE on my body will trigger a relapse within 24 hours for me.  I found this out the hard way, of course.  For comfort's sake, I wear sunglasses a lot, and use artificial tears to help combat the dryness in my eyes.  I will soon be ordering glasses with a tint to be worn indoor, as sometimes the glare is too much for me, even while inside.  I have missed out on a lot of activities with my family and friends, due to the potential of sun exposure.  This has been difficult emotionally, but I try to remember that my health and sight are precious and must be prioritized.  I may have to miss my daughter's high school graduation due to the fact that it will be outdoor, but I can't let pride get in the way of my health.  I wish you great success in treating and dealing with this difficulty. 

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Jes77 Newbie

Jes77

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I was diagnosed with this two years ago. It took multiple doctors to finally figure out what it was. It had progressed into Stromal Keratitis. It's been an very isolating experience at times. 

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    • WilsoInAus
      HSV 2 Testing

      By WilsoInAus · Posted

      I really suggest that the best thing is for both you and your boyfriend to obtain the Westernblot HSV test. He has a 50%+ chance of being positive and you have a 50%+ chance of being negative. Only the Westernblot can sort this out for you.
    • WilsoInAus
      worried

      By WilsoInAus · Posted

      Hi @kpn the first thing to note is that it is all OK to have HSV-1 or indeed any HSV type. It is not negligence, it is just being human. Oral HSV-1 is not an STD in the sense that the primary transmission is non sexual and the majority of it occurs between parents to children. If any of your children contracted HSV, you would know it. It wouldn't be a silent infection for children. HSV-2 tends not to shed from the oral region for people who have it there in any event. At age 73, about 80% of the population has HSV-1. There is no reason to believe that your mother isn't one of those people. About half of all carriers of oral HSV-1 do not realise they have it and have no living memory of cold sores as they were infected when very young. The most logical explanation is that your mother has oral HSV-1 from her childhood and that your daughter doesn't have oral HSV. Not that it is relevant to anyone but yourself, but your wife might find she actually has genital HSV-1 having had an untyped swab when she was diagnosed.
    • WilsoInAus
      Anyone with oral blisters but negative igm/igg tests ?

      By WilsoInAus · Posted

      Hi @Dylan86 and welcome to the website. First note that you cannot pragmatically become infected with HSV-1 from sharing a drink. If you carry HSV-1, it did not come from that episode. As such it is extremely unlikely HSV-1 is the primary cause of your issues. Can the WB miss a HSV-1 infection? Rarely but its feasible in less than 1% of carriers who test with WB. Note that the WB does not have values, it has positive or negative as you say. It is way more accurate than IgG as it looks for all 30+ antibodies that are in your blood for HSV. Could you have HSV-1? Yes it is feasible, but it would be a very old childhood infection. Could HSV-1 be causing your oral issues? No herpes will not cause the burning mouth syndrome you describe. Could some of the lesions be herpes related? It is feasible if you are a carrier. But it is unlikely to be the primary cause of the issues, but its an opportunistic virus that can cause issues when something else is taxing your immune system. The best thing you can do is the PCR test on a oral lesion and that will be pretty definitive. Either way, in summary. I'd suggest there is <1% chance you are part of about 70% of the population that has HSV-1. Further there is less than a 1% chance that herpes is the primary cause of your issues.   
    • kpn
      worried

      By kpn · Posted

      My wife has had hsv 2 for around 8 years. We have two young children 3 years old and 18 months old. My wife only had one outbreak when she was first infected so we didn't worry too much about passing it on to our children. I understand the risk to be pretty low under those circumstances. I don't believe my wife took antivirals during either pregnancy. My younger child has diaper rashes pretty often and has had what I thought was hand foot and mouth disease. That was going around the daycare a while back. I haven't really given it much concern though.  About a week ago, my mother kissed my youngest on the lips. My kid was congested at the time but they pretty much always are. About 3 days later, my mother developed a cold sore on her mouth. She has never had cold sores in her life and she is 73 and happily married so she is not going around messing with anyone. She pointed to the fact she had kissed my youngest and presumed that is where she was infected. At first I said that's not possible since my child has never had any cold sores but since then I have really started to consider that maybe it is possible she contracted it from my daughter. This has me worried that my daughter does indeed have hsv2 and was shedding in her mouth. Does anyone have any experience with this? I am really losing sleep about this. Two people I care so much about got hsv from my negligence. I am fine if I were to contract it, I am not worried about what others think at this point in my life. I just don't want anyone else to have it. 
    • CHT
      Could this be genital HSV or something else?

      By CHT · Posted

      Hello DavidGua.... based on the two pictures, I'm not seeing anything that resembles a typical herpes outbreak.  I am not sure what those spots are on your penis.  Please have a doctor take a look and I'm sure you'll get a proper diagnosis.  Have you ever received an HSV antibody test (IgG)?  Again, I doubt your symptoms are herpes-related but, if you'd like some peace of mind, you could request the IgG antibody test for HSV2.   Best of luck.... let us know if you have any other questions/concerns.
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