Immunocompromised and newly diagnosed/scared.

Hi there. I'm new here so I want to start off by saying how deeply sorry I am that any of us are going through this. It's personally traumatic for me. I was sexually assaulted on October 10th and was ready to end my life. I met a wonderful man 9 days later and didn't know I had the infection until about a week after we made things official on October 20th. It was love at first sight and still is. We knew we want to be together forever so we had unprotected sex a couple times. He's only ever had one other partner before me and was with her since he was a virgin and her too. He went 6 years before meeting me. I ended up getting vaginal ulcers and long story short I was diagnosed with hsv2. I was truly devastated and still am. I can't tell you how many times I've cried over this. I don't feel like I deserve him at all now but he always reassures me otherwise. His Mom is a really judgmental person and I would die if I ever passed this on and she ever found out, much less at all.

I was handed a very unlucky hand in life. I was born with complete heart block and have a pacemaker, which later on I developed hardcore panic attacks and then panic disorder. My concern is that I have Celiac Disease, Endometriosis, Fibromyalgia and psoriasis so those extremely immunocompromising conditions I think are what have given me MAYBE one day or a couple days here and there of relief, but now I have another outbreak and my period triggers them because of my endo so now I'm afraid I'll have 3 outbreaks a month-- which is bullsh*t since I'm on valacyclovir 500mg and paid out of pocket on a disability income because they're not covered. I'm doing this so I don't pass it onto him if I haven't already but if the outbreaks are still so frequent then I ask myself what's the point? Is it really even helping at all? Our sex life is basically non existent and the one time we could have sex made it worth the wait but I feel like the negatives with me far outweigh the positives and that one day maybe he will have had enough. He's the most amazing man I've ever known and I don't want to hurt him, but the stress of worrying about that constantly is hurting me. That could be in part causing it. My question is how immunocompromised am I actually? I heard valacyclovir suppresses the virus AND the immune system. Is this true? What can I even do at this point? I want to avoid him ever suffering the way I do. It's mostly mental but physically it feels like I have paper cuts all near the opening of my vag/vulva, and when I saw in my mirror that it was a full blown outbreak yet again, I bawled my eyes out and cried myself to sleep while he held me there. I know people may think this is no big deal; that it's just a skin condition but for somebody in my position it's sheer hell. I know I can't deal with 3 outbreaks a month... like I just can't do it. I'm honestly at a complete loss and am crying as I type this because I'm already so overwhelmed without this condition that the addition of it scares me. Not to mention valacyclovir has so many nasty side effects like dehydration which I feel so bad, but it could do long term damage to my organs; kidneys and liver, the only organs that even work at this point. Somebody please... tell me what I can do. To protect my boyfriend at this point and to protect myself. I had to have surgery earlier this year that resulted in me losing my fallopian tubes and now I've got this.. I need some kind of ray of hope.

First off I am so sorry about your sexual assault. I hope you are working on healing from that. Secondly, for the vast majority of people HSV is not a big deal, for a tiny percentage it is. You are the small percent that it's causing much difficulty for. You have every right to feel your anger and frustration over the tremendous impact HSV is having on you. Actually, we all have a right to feel how we feel. Chances are if you pass this to your boyfriend it will not have the same impact on him. Statistically he is likely to have no or minor symptoms. So you can stop worrying about passing it to him. Also you are worth it to him. That's why he's by your side. Trust him when he gives himself to you, when he comforts and loves you. Because you are worth it! I know you are physically affected by this more than most but I suspect that, like most, your body will build up antibodies as the months (and years) move on and symptoms will improve. Lastly, there will likely be a vaccine for both those who have never been exposed and for those who already have the virus. Like chicken pox and shingles. If they can do it with VZV they'll be doing it with HSV eventually.

Again, I'm terribly sorry about your assault and they way it has impacted you physically and psychology. Big virtual hugs.

First off I am so sorry about your sexual assault. I hope you are working on healing from that. Secondly, for the vast majority of people HSV is not a big deal, for a tiny percentage it is. You are the small percent that it's causing much difficulty for. You have every right to feel your anger and frustration over the tremendous impact HSV is having on you. Actually, we all have a right to feel how we feel. Chances are if you pass this to your boyfriend it will not have the same impact on him. Statistically he is likely to have no or minor symptoms. So you can stop worrying about passing it to him. Also you are worth it to him. That's why he's by your side. Trust him when he gives himself to you, when he comforts and loves you. Because you are worth it! I know you are physically affected by this more than most but I suspect that, like most, your body will build up antibodies as the months (and years) move on and symptoms will improve. Lastly, there will likely be a vaccine for both those who have never been exposed and for those who already have the virus. Like chicken pox and shingles. If they can do it with VZV they'll be doing it with HSV eventually.

 

Again, I'm terribly sorry about your assault and they way it has impacted you physically and psychology. Big virtual hugs.

Update

I read a blog about how you can cure almost any disease with diet and plan to read more but my main question is this. I want to cure or at least put into remission my autoimmune conditions because I was sexually assaulted and contracted genital herpes as a result, and the combination of my celiac disease, psoriasis and endometriosis have made it so I literally haven't had a break at all whatsoever. My messed up immune system and probable leaky gut have given me outbreaks back to back and I have drastically changed my diet but between having to eliminate basically every food to avoid immune system inflammation and food with high amounts of Argenine because of the herpes & gluten because of celiac disease, I feel like I've got nothing left to eat. I am under an immense amount of stress and that doesn't help but anybody in my situation would be. It says I have to avoid animal fat, dairy, gluten obviously, quinoa, rice, corn, soy, refined sugar, caffeine, alcohol and nightshade foods like potatoes and tomatoes etc. That basically leaves me with no food at all. Honestly I am so upset and I am starting not to see the point of why I exist at all. This is actually hell and even with all of this effort I STILL feel like it's not doing much. I'm taking lysine supplements, garlic and prunella vulgaris but with little effect. I'm at my wits end. Please help me if you can.. even to just point me in the right direction. Thank you as well for trying to cheer me up, as futile as it may be. Having to cut all these foods out make me want to honestly die. It is so stressful.

@MissLamentful There is no question you’re going through hell without a moment of relief. Anyone in your situation would be on edge and at their wits’ end.

I know we’ve never met, but if we were friends, the first thing I would tell you is that you are not alone. It’s true that you may not find a lot of people at this particular forum who can relate to dealing with HSV, autoimmune disorders, and a recent sexual assault. Likewise, a forum for fibromyalgia, endometriosis, celiac or psoriasis might not be of any help when it comes to herpes. It may be years before you meet someone “like” you. Maybe never. But they’re out there. If you haven’t done so already, you might try typing “autoimmune” into the search bar on this forums. I believe the default setting is that if you PM someone, it sends an e-mail to their e-mail address.

I mentioned a naturopathic doctor in a different thread because you’ve got a shitload of different things going on right now, and there might be a benefit to having a highly trained and qualified professional look at what I’ll call your big picture—your physical symptoms, your labs, your lifestyle, and what you’ve tried so far.

If you’re interested in learning more about how diet might help you, I can think of lots of books and movies to get you started. Documentaries like Forks Over Knives or Fat, Sick & Nearly Dead. Books like How Not to Die (Greger) or Eat to Live (Fuhrman). I’ve been a vegetarian for a decade, have close friends with celiac, coworkers with fibromyalgia, my sister has sworn off sugar, friends with food intolerances, and my mom has thyroid issues and leaky gut. I feel Iike I’ve been exposed to every kind of restricted diet there is. The internet is full of a lot of conflicting information. A naturopath will tell you with confidence what you should and should not eat. On a related note, not every dietary restriction will be forever. Will you need to avoid gluten forever? Yes. Totally doable. Thousands of people do it every day. If you’re restricted from things like legumes and GF grains for leaky gut, that’s usually just until your gut heals. Then you can slowly reintroduce those foods.

Here’s what I know about heavily restricted diets: There IS food to eat. It’s not in a restaurant (or at least very rarely) and it’s not in a package. It’s not convenient and it’s usually not quick either. I promise you there is food to eat. But it’s going to take a lot of time and research to find recipes and then to prepare them. Research and education go a long way here. I’m currently taking an online cooking course for a plant-based diet and even though I cook often, I’m only a third through the course and already learning all sorts of stuff I can do differently to make my food taste better, cost less, and spend less time in the kitchen. If you need ideas, once you’ve worked with a professional and know what your diet needs to include or avoid, feel free to PM me. I’ve had enough exposure to restricted diets with friends and family (and to an extent myself), I’m confident I can come up with some ideas.

Moving from physical to mental/emotional health for a moment, I second what @dumfounded (now @username) said about healing from the sexual assault. I hope you have been able to find resources—be it a trusted counselor or a support group—to help you start the healing process. Another idea is to find support groups for the other autoimmune disorders you’re dealing with. Some may be online only, but if you can find an in person group of some sort, it can make a big difference.

The kind of chronic pain you’re dealing with is enough to make suicide very attractive. I hope you’ll dig deep and find even a speck of strength to try some more things. When we’re going through hard times, it’s our human tendency to think that things will never improve. And when things are going well, we’re always somehow surprised when that doesn’t last forever! I remember having a UTI a few years ago which took six months to heal. The chronic pain from that alone was truly hell. It gave me a whole new level of appreciation for what sufferers of chronic pain deal with. One idea I’ll throw out for consideration is a Mindfulness Based Stress Reduction Class (MBSR) class. Again, I think an in person class would be great and they’re all over the country, but there’s also online classes too or a very long book by the program’s founder. A quick Google search will get you started. I’ve heard a lot of really good things about it, and plan to take a local class where I live this summer once I get moved. It was designed to help people who are dealing with chronic pain and other issues that are difficult to treat.

Finally, and please take this with the love and compassion that it’s offered with....healing is going to be HARD. Do you want easy? Or do you want relief? You are not the first person to be in an impossible situation, who feels totally alone and helpless, and completely fed up. I’ll never forget the two years of hell I went through with my dog’s systemic yeast infection. Who’s even heard of a yeast infection with a dog, right?

Almost no one—that’s who. My sweet Teddy, a golden retriever, passed away in November at age 15 years and 8 months. I never thought he’d live past the age of 8 or 9 because of his numerous, unending health issues. But the worst of it was the systemic yeast infection that developed around age 10 or 11. If I could post pictures, I’d show you pictures of how the skin on the underside of his tail would become flaming red and he’d chew it raw. I had to shave the fur to treat it and he loooked just ridiculous. Or the hot spots he’d develop constantly between his footpads. I could fill a 5 gallon bucket with all of the soaps, shampoos, sprays, lotions and potions I tried on him. I’m convinced he developed this because of some extremely strong medication he was on for a long time to treat allergies. It’s the same medication they use in humans who receive organ transplants. It just obliterates the immune system so that their immune system won’t reject the new organ. ........

I spent hours and thousands of dollars at the vet treating this unknown skin condition until I finally found a doggy dermatologist at $300/visit who looked at a sample from his tail under a microsocope and said I was dealing with a severe systemic yeast infection. None of her recommended treatments worked, and he didn’t get better on his own like my ex-husband was convinced he would. He lived in a cone so he wouldn’t chew himself to death. So it was up to me to find some answers. And let me tell you—the next two years were FUCKING HELL. I had ZERO support or advice from anyone. I spent COUNTLESS HOURS scouring the internet looking for answers. I spent THOUSNDS of dollars trying new products. I had to bathe him TWICE A WEEK for TWO FUCKING YEARS to wash off the toxins which created the inflamed skin as the yeast SLOWLY died off and exited his skin. He wore that fucking cone.....I kid you not....24/7 for over two years unless I occasionally had him within both SIGHT and SOUND of me. If I had to run something upstairs or use the bathroom—the cone went on. I switched to a raw meat diet even though I was totally grossed out by it and tested him for food intolerances so I could avoid foods with those ingredients. The whole fiasco was just fucking murder. It’s been years now and my blood pressure is still through the roof just writing about it.

He got better.

I finally found the right combination of the right diet and 9 different supplements he took for the next 4 years. It was slow as molasses though, and my coworkers can tell you I was on the edge of a nervous breakdown for a very, very long time. The last few years of his life were the healthiest he had ever been. I can’t even imagine how much pain and discomfort he was in during those years, especially not being in control of his environment and not being able to speak. I genuinely don’t know how I survived it either. I felt so alone, so frustrated, and so pissed off that everyone I knew had healthy dogs they never took to the vet and fed cheap kibble from the grocery store. It was totally unfair.

Well that was a much longer post than I anticipated. :) I hope I’ve conveyed that you’re not alone with how you’re feeling, and that even when you think you’ve exhausted every new possibility, you probably haven’t. Keep going. You’ve already been through hell and you’re still standing. We’re rooting for you.

@HikingGirl thank you so much for your response and I want to say from the bottom of my heart, thank you for your detailed advice and explanations.. and that I'm truly sorry for your loss. I love reading about other people's journeys through life and it spoke to me in a way that is astounding because if your dog could get better after all of those attempts then I should be able to as well. It's extremely overwhelming but you definitely get exactly what I am going through just in a very different way. @Vin3 brilliantly mentioned getting an IGG food test to see what my body is actually legitimately allergic to so I don't have to go so far as to eliminate basically everything. I do know I can't eat gluten of any sort but I'm not sure if corn or rice count. I'm driving myself literally insane with not knowing what is and isn't safe at this point. I won t have any real answers until I save up enough money to get this test which is what I've really discovered. It's amazing to know I'm not alone and I hope anyone who read my rage about who are we kidding pretending we feel better or even good about our diagnosis are just kidding ourselves can see that it was coming from a place of extremely deep pain... because in my position it really doesn't seem like it'll get better. It's so hard to do trial and error when I'm on a disability income and my rent is over half of what I make before bills and other expenses. I'll just stop eating sugar for the most part and try to cut out most junk food to start until I can get those tests and get to the bottom of this once and for all. I just hope I can get some answers so I can also help other people:)

You’re welcome.

I know.

{{{hugs}}}