New here, need help :(

[Siniana]

Hello, new to this and am desperate for some help. Been terrified beyond belief lately as to im one of the unlucky few with a rare case and I just can't handle this anymore. Anyways, here's my story.

So about 6 years ago now, very long story short, I became bulimic/anorexic. Eventually, it turned into more of an addiction and I started to eat but just stayed bulimic. This is why I am having issues, but I will get to that.

I've been in a happy healthy relationship with my HS sweetheart for 8.5 years now, and married for 3.5. We have an amazing beautiful 2.5 yo daughter.

The day before new years Eve in 2013 I went out with some girlfriends, and we went back to one of their bfs house bc they were having a party, which I never really go to bc im not into crazy drinking etc. Last thing I remembered was drinking margaritas with my one friend, she was beyond drunk, and I got sick. Then I guess I blacked out and when I woke up someone was on top of me and I was too sick to do anything about it.

Few days later, my worst nightmare happened. Went to the dr, found out I had hsv1. I was beyond terrified and hated myself and telling my husband what happened was the worst part. Anyways, I had the worst initial symptoms, because with my eating disorder that I have been improving on each year has depleted my immune system.

Anyways, here I am 1.5 years later, and I feel like this is going to kill me. No matter how careful and clean i am, how many gloves I wear, no matter how much abreva I use or how much valtrex I take, I am suffering and this is spreading. I have gotten obs pretty much everywhere. On my foot once, arms here and there, a finer twice, my neck, back, scalp, throat, inner ear, inner nose, and my biggest and most depressing battle.. My face. I'm lucky I guess In a sense that I don't get clusters, just one and maybe another spread around. But they are constant. I never go a day without probably less than 5-10 obs somewhere on my body. The newest place that's terrifying my is my ears. It is the worst pain imaginable and I don't even understand how it has spread there. After doing research I've pretty much concluded that I have a systemic disease and who knows if it has already reached my CNS. I've had severe headaches, but no other symptoms of encephalitis luckily.

Anyways, I am terrified. I hate myself and have questioned living so many times. Why do I deserve this? My daughters heart breaks every day bc im terrified to touch her or hug her or kiss her since I get so many outbreaks on my upper body and I don't touch her if I can help it bc I never know if I am shedding and I've already had obs on fingers. It's the hardest thing in the world bc I feel like this leper who can't live or touch anyone. And my job doesn't help either. Being a supervisor at a bank is a stressful high energy job for me and it only makes it worse but I can't afford to quit and I can't be home with my daughter all day bc it is a risk. I take 1g of valtrex a day which does absolutely nothing, and I take more if I have severe outbreaks, which is usually during menstruation.

I feel like my life is over. And all I wanted too was to have more kids but with my health, I don't think that will ever be possible

Has anyone ever had anything so severe? Has anyone been referred to an infectious disease specialist? I have no idea how and im pretty sure my only hope is to see one and im assuming I'll need IV treatment or this will never calm down. If not I'm afraid im going to end up with encephalitis and may even die

[JBnATL]

I have been coming to this website daily for 6 years now and have never heard of this affecting someone so badly. Are you sure all your symptoms are caused by this virus? The virus lives in your nerve system and you have different nerve systems that do not connect. The virus cannot travel by itself from one system to the other.

I know many people who have visited infectious disease specialists and hope you can find one who can help you.

Good luck!

JB

[Siniana]

Yes I am sure all I can think of is it transferred while showering since my immune system is so bad, or when I was first infected and didn't know I had it and that's when it spread

[november13]

Welcome to the site! I'm glad you've found it. I'm so sorry to hear about all you are going through. It sounds very difficult. Like JB said, your situation sounds very unusual. How do you know that all of the symptoms are related? Have you had the sores in each of those places swabbed? If not, I'd be sure to do that just to make sure you know what each thing is. We see a lot of people on here that think they have spread it to other parts of their bodies but haven't, and that fear is usually caused by how bad they feel about contracting the virus or how guilty they feel about getting it (what happened to you is not your fault!). It wouldn't surprise me if you did fall in that category since you already have serious body dysmorphia issues. (I'm not saying you do fall into that category, but I've dealt with my own dysmorphia and know how all-consuming it can be.) It might be good to talk to a therapist about this.

However, if you have had the sores swabbed and it is all HSV, it sounds like it must be related to your immune system like you said. You said that you think you have a systemic disease from doing research. You should have this checked out by a doctor; don't just self diagnose because it sounds like it is seriously affecting you. If you can properly address what you have and work on treating it, the symptoms and spreading may go away or at least reduce. What have doctors said about the severity of your situation? What are you doing to improve your health already? Have you started taking lysine supplements yet? Many say that helps. (I take it and haven't had another outbreak, but my HSV is very mild so it might not be cause/effect.) What are you doing to reduce stress (yoga, meditation, exercise, journaling, etc.)? If you look through the forums, you can find a lot of suggestions for little changes you can make to improve your situation. Try different things until you find out what works for you.

I hope you feel better soon!

[Siniana]

Thank you so much

You are correct, I don't know 100% as I have not had it checked, but I'm pretty positive. Each outbreak looks just like the ones I have had swabbed before, and on my face it would look like a typical pimple, but if it breaks it's really not bc it's the clear/yellow fluid that sometimes bleeds with it and just doesn't stop until it dries and crusts over. I've never had that before until all of this happened. And they hurt and always reappear in the same spots. I can tell my body is trying to fight it as sometimes they don't break open or i just get this swollen painful spot. But if I hit one small trigger it all comes back. I'm constantly exhausted from my body fighting this though. I used to work out every day and run 2-3 miles, but lately Its been drastically reduced bc I am just too exhausted anymore by the time I get home. I take 2000mg of lysine every day but I haven't noticed any changes. My job is a lot more stressful than it used to be as I had another promotion and switched back to my first branch which is bigger with more drama, and I've noticed it has been worse for me since I have been back. The previous branch I was at was pretty much stress free and I actually had a couple month last fall that were pretty calm. Diet wise, it's not great. I try to eat better but battling an eating disorder makes it hard to eat enough or right and nutrition is a struggle with that. But I take many other supplements too and also boost type drinks for nutrition. Like I know I have to somehow get the energy back for more exercise again, and commit to a healthier diet to fix this, but the depression, fear, and anxiety makes everything so difficult. And the second I change my diet my family criticizes me thinking I'm on some restricting weight loss diet, but really im just not about to tell them what's wrong. It's extremely difficult to do what I need, and discouraging as well. Are there any other supplements besides lysine that's supposed to help? Or certain foods to knock it out? I've read about arginine and how it can trigger obs, which I believe is true bc if I have chocolate or peanut butter, I have a new one the next day. However I can't cut all foods out with it because I get severe muscle cramps from standing all day and to keep my heart healthy, I need it. So it's like a lose lose for me.