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Mollaret's Meningitis, A rare complication from HSV, have you heard of it?

Discussion in 'Everything Else Herpes!' started by La Luna, Sep 29, 2011.

  1. La Luna

    La Luna Member

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    I think I have Mollaret's Meningitis, which is a rare complication from HSV 1 or 2.

    I will let you know if/when I get a diagnosis.

    But I just want to talk to somebody else about it.

    I'm not sure if it's the same thing as HerpesViral Meningitis, but I would like to discuss that with somebody as well.

    Has anybody ever heard of this and I can't stop thinking, HSV, fine I can handle that but Meningitis caused by HSV? why do I have this rare thing and how much money do you think a Lumbar Puncture costs? Thats' the test that may show that I have Mollaret's but it doesn't always show up, so that's not so great either...

    I'd feel better if I could just talk to anyone that would just say anything constructive.

    I feel hopeless and have severe stiff neck and head ache! AHhhhh!

    I went to the Emergency Room today and the doctor made me cry, he was so mean, possibly the meanest person that I've ever met!

    he didn't even think there was a such thing as HerpesViral Meningitis. or that if I had meningitis I would look different than I did, (appear to be in more pain, perhaps) which is not true! and I was clearly in pain and all of my muscles were going stiff as my symptoms "flared" just like any outbreak flares. he said that I am too tense, which I believe is caused by Meningitis

    he prescribed me muscle relaxers that aren't helping with anything but the muscle pain (and only slightly)

    I can't describe how bad all of my symptoms are. Let's just say that there is NO WAY that I could have a job right now. So I'm suffering in so many ways, not just physically but financially.

    I'm in so much pain and I'm feeling hopeless!

    so let's talk about this horrible Mollaret's Meningitis, maybe then it will become more known, and I would have received treatment by now.
  2. JBnATL

    JBnATL Staff Member Super Moderator

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    If two doctors examined you and said you don't have it, I doubt you have it.

    Good luck though, I hope they can find what is causing your pain.

    JB
  3. RealisticGal

    RealisticGal Well-Known Member

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    I'm confused by both of your posts on this topic, foodlover1000.

    Question #1 -- do you know for sure, confirmed by tests, that you have HSV? If so, HSV1 or HSV2?

    One thing I will say for sure --- if you go to see a doctor telling them you are certain you have a rare condition, they are likely to take you less than seriously. In fact, it will piss quite a few of them off as they tend to think they know more than their patients and should be the one making the diagnoses.

    No, I'm not saying docs always know more than the patient. Quite the opposite. All I'm saying is that your approach might be causing a bad reaction on the part of most doctors, who might want to help you more if you told them your problems and tried to let them figure things out a bit themselves.

    Another thing I will say is that the practice of medicine is a funny thing. Many conditions have vague symptoms that are similar to many other conditions.

    :wavey:
  4. JCharmer

    JCharmer Newbie

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    Hey Foodlover1000,

    In reading your post, I had several different reactions. I was diagnosed with Herpes Meningitis in March of this year. Without telling the entire story (which I would love to tell if you want to hear it. :) ), I ended up being hospitalized for almost a week. It was a nightmare. The hospital was very unorganized and unprofessional. I didn't get answers to a lot of my questions. I finally discharged myself when they announced that they wanted to do a second spinal tap, "just to be sure".

    Your post actually made me feel a little bit relieved. It's nice to know I'm not the only one who had this crazy thing. I don't know what my advice is worth, but if I were you and had been getting the run around from medical professionals, I would take a different route. You need to go and get tested for HSV. Once you know if you have that or not, you are more than halfway to getting better. The thing about viral meningitis is that there really isn't anything that they can do about it. There's not treatment or meds to speed up the healing process. Your body has to do it on its own. Bacterial meningitis is a completely different story, and let's just both be glad we didn't encounter that monster. Go and get the HSV treated. Once your body has that under control it will heal on it's own. The stiff muscles, head aches, the neck pain will dissolve. I was seriously in the hospital without an IV or anything. It took a lot of bed rest, but the body is amazing that way.

    Anyway, that's my two cents. I still struggle (A LOT) with this whole Herpes Meningitis thing. I'm terrified I'll have a relapse. But, I guess I'll deal with that if it happens.

    Be well,
  5. l2008

    l2008 Newbie

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    JCharmer, do you know how you got hsv meningitis? Did you take antivirals to help with it?
  6. La Luna

    La Luna Member

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    Hi guys!

    and thanks for the replies!

    Yes I was diagnosed with HSV1 when I was around 17.

    Thank you for your reply JCharmer!

    I'll let you know how everything turns out.
    Last edited: Oct 10, 2011
  7. La Luna

    La Luna Member

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    to l2008

    since HSV lives at the base of your spine for your entire lifetime, I've read that usually a trauma or stress triggers it to progress into something worse such as meningitis or encephalitis (which is supposed to be rare.)
    But I'm gong to post a few great links that should answer all of anybodies questions about both of these horrible things.
  8. RealisticGal

    RealisticGal Well-Known Member

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    Wow! What a lot to take in.

    I'm not saying that acyclovir might not be of help to you. But it should be the ABSOLUTE LEAST of your concerns at this point!


    If your situation truly is as you describe, the most urgent thing you NEED TO DO RIGHT NOW is find some means to GET AWAY FROM YOUR ABUSER and get ALL SORTS OF HELP.

    If you don't do that, he is going to KILL YOU. Mollaret's won't even be a blip on the radar screen if you are dead by his hand.

    My advice:

    • Stop trying to diagnose yourself with Mollaret's or anything else. Even though you might be right, that is part of your problem with doctors.
    • Get in contact with Social Services and explain your life situation.
    • Have them get you the hell out of there and into a shelter or some other safe place.
    • Stop letting doctors and other medical care providers run all over you. They can't examine your "private parts" if you don't let them, unless you are under arrest or being held in a psych ward or something.
    Is there something you are not telling us?
    Last edited: Oct 5, 2011
  9. La Luna

    La Luna Member

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    The good news is i haven't had a seizure for a while. My neck is still stiff and hurting, still have constant headaches. I'm trying to get some insurance right now, which will help me out greatly!
    Last edited: Oct 10, 2011
  10. La Luna

    La Luna Member

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    JCharmer, it's scary how much they don't know about this "thing".

    Did you take any acyclovir? Or what did you take to treat the HSV? Your so right, I'm so thankful that I didn't get bacterial meningitis. But I still need a diagnosis before , i'll be happy.
    Last edited: Oct 10, 2011
  11. RealisticGal

    RealisticGal Well-Known Member

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    Honey, you being a "cutie" or not has no bearing on this situation.

    There is no way medical professionals would normally do something like this, especially since it apparently required the collusion of several individuals to restrain you.

    I worked as a health care provider for 25 years. I had lots of patients who were quite hunky. I never took advantage of any of them in such a way. Just the opposite, in fact.

    If they really did this in the way you perceived it, they should have been reported.
  12. RealisticGal

    RealisticGal Well-Known Member

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    Edited to remove certain personal details.
    Last edited: Oct 11, 2011
  13. La Luna

    La Luna Member

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    To RealisticGal : Thank you for your kind and helpful words. You're a wonderful person!
    Last edited: Oct 10, 2011
  14. RealisticGal

    RealisticGal Well-Known Member

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    Last edited: Oct 11, 2011
  15. JCharmer

    JCharmer Newbie

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    I2008,

    Hey there. In response to your question, I am not completely sure how I contracted HSV Meningitis. I have narrowed it down to two encounters but I don't know for sure. What led up to me being hospitalized was a sore throat. I felt, what I thought, was the coming on of strep throat. My Dr. tested me and I came back negative. There were no puss pockets, but we decided to treat for it anyway. Unfortunately my throat continued to worsen. After two weeks, through Web MD and the encouragement of a good friend I went the the ER. I was experiencing all of the symptoms that the website said were serious. I really didn't expect anything. I thought I'd be home within an hour. Long story short, they kept me. They did give me antivirals while I was in the hospital, but I don't remember what they were and they didn't send me home with anything. They said that they could see blisters in my throat and identified them as HSV. From what was explained to me, the HSV went untreated and gained strength enough to spread to my Meninges. The outbreak was quite severe. I was told that there were quite a few visible sores in my throat at various levels. I was in the smack middle of some very stressful life changes, so I suppose it shouldn't be a surprise that I had such a severe outbreak. Of course it was a huge surprise at the time.

    I know that my next step is to go to a Dr. and get a full range of tests done and put together a plan to manage the virus. I didn't get a lot of answers or support from the hospital staff. Unfortunately, I have never been great at facing my fears. I'm terrified of addressing the issue head on. I suppose it's time to pony up and be a cowboy about it eh?
  16. La Luna

    La Luna Member

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    Have you ever been to the Mollaret's Meningitis Support Group?

    I'm going to join.

    Here's the link :

    http://mollaretsmeningitus.ning.com/forum

    these people all have the same or very similar symptoms and seem to be responding to treatment.

    Some of their stories are amazing. Like one person had 13 Lumbar Punctures and only 1 came up positive with HSV in their CSF!

    I've recently read that the H virus only shows up with a Lumbar Puncture during the first 2 or so days of a meningitis attack! I'm like 2 months into my attack, so HSV wouldn't even show up if I did have a lumbar puncture. So, I'll forget about that!

    Now, I'm shifting my focus to get some Acyclovir. So far I've never had any HSV treatment but after 2 months with a stiff neck and two weeks of seizures (which I've never had before so I was pretty scared) I'm ready to be treated for HSV once and for all.

    Also, an E.R. doctor gave me muscle relaxers for what he called "having given myself a severely stiff muscle from being too tense" (which I doubt is even possible) and the super-strong muscle relaxers slightly helped ease the pain and stiffness. So, you might want to tell your doctor about that if you ever have to go through that pain again!

    JCharmer, I'm so sorry that you had to experience what you went through! I am giving you a mental hug right now! I'm always here to talk to you, if you ever need to chat, and of course i want to hear your whole story if you ever feel like telling it so if you'd like to tell me privately then send me a private-message. If you feel like telling your story or saying anything here on this thread, please do so, believe it or not, we are raising awareness right now.

    There isn't too much information about this out there, and with so many people having HSV , Mollaret's will become more common and these people will have some kind of information to turn to, so they can be better able to deal with their doctors who still might not know much about it.

    I was really scared because I thought the seizures meant I suddenly had encephalitis on top of meningitis. Which is really bad, but now that I'm getting better on my own, I ruled that out. But hey, ya never know. Obviously, I will know a lot more once I get an MRI and CT scan, which will happen as soon as I hear about this insurance I'm supposed to be getting on.

    I'd say if a person comes into a doctors office claiming to have had a stiff and extremely painful neck, head ache or pain and sore throat or throat problems for a month, the doctor better take that seriously, but that's clearly not the case.

    I'm going to post more, because I have so much more to say. This site is very helpful and so is this forum so I think here is a great place to talk about this.

    Although, like I said, I'm definitely joining the Mollaret's support group.

    Lol, a whole bunch of people with stiff necks and head aches? It sounds like a party to me! << kidding.
    I know talking with those people will make me feel better. When reading their stories (and yours JCharmer) it's like hearing myself talk about my symptoms. I feel less alone and helpless. Even though that makes me feel so selfish.

    I feel so bad for my family, for having to deal with all of this and mostly the recent sudden seizures! I hope that never happens again, that was the worst!

    For the record, I was having Simple Partial Seizures (which is like a whole new world to me). They're sort of different for everyone, and mine were always the same but different because they were getting worse daily but they were always equally horrible because I was awake, watching the craziest things happen to my body and I remember a lot of it. I remember most of it all, but I can tell that the seizures are still affecting me mentally, like still it is obvious to me that I'm losing my mind! It's so hard to think , like my brain is just foggy and cloudy. I'm a different person now. Not as smart and much more easy-going, like I don't care about none of my responsibleness, I just want to take it easy. I stutter now and forget what I'm saying, i repeat things. And this all happened in the last 2 months, since I started having seizures.

    It's like my brain fried! But I just can't stress enough how happy I am to be back to somewhat normal where I'm not having seizures. I'm so happy that my body was able to fight it off. Whatever it was!

    I will always feel so deeply for those people who are affected with seizures now! Even more so, even though my mother has been an epileptic my whole life, having Grand Mal/Tonic Clonic Seizures. She always seems so blissfully unaware of her seizures while although my seizures were nowhere near as bad as hers, the fact that I was awake and sort of able to think and talk really disturbs me. We didn't even realize that the daily "episodes" were seizure until the last few when I started flopping around like a fish. Well, it was more like a billion bad symptoms like fevers, rapid temperature changes, sweating, chilling, shivering, shaking, confusion, even more stiff neck than usual, splitting headache, with dull headache, exploding head pains, also the feeling of the outside of my brain being on fire, sudden horrible ear aches and pains, eye aches/pains/twitching, muscle weakness, sick feeling in stomach, scared about what's happening, my heart would be beating out of my chest, thumping so hard that it hurt, i felt like i was loosing control of my bowels and that I was going to pee suddenly but I never did, that's good i guess, body weakness, the sudden inability to catch a full breathe (which was definitely the scariest thing of all) on top of : finally, my legs twitching and jerking really bad, which rolled up my body , over and over for about a minute, then an extreme tightening of my whole body , like my body went stiff as a board which hurt so bad and at the same time my jaw would like open all scary-like then my head would try to force itself downwards towards my shoulder, which was fighting against the stiffness adding to the severe pain! Then it would release and my body could relax for a second (which I remember feeling so good compared to the stiffness before). Then it happened over and over, for a few minutes, then it would either end suddenly or I'd slowly come out of it. But I'd always fall asleep after wards and have to pee really bad.

    It's like my brain went all wrong and was telling my body to do things and I just had to watch and experience it. What a crazy experience!

    Many people have Auras before seizures, which is like warning signs that a seizure is most likely coming on. My daily "episodes" that lasted for 2 or 3 weeks (right in the middle of what i believe is a meningitis attack) were like so bad, it was like an hour of horribleness all leading up to me not being able to breathe or think clearly. One of the very first signs was my right eye twitching, it was way worse than "an eye twitch" it was like an eye explosion. Then sensitivity to light actually worsened! I would panic knowing what was about to happen. It's so crazy to have gone through this. I used to be so dang healthy. wow!

    I could talk about the seizures alone, for ever because they are so complicated. And the whole experience was so crazy! I'm so thankful that now I only have the usual symptoms, like stiff neck , pain at base of skull, head aches and pains, and a few others. I definitely prefer it over the seizures. whew!

    So my primary doctor has been telling me to see a Neurologist which should be able to help with all of my problems whether new or old. So yeah I'm waiting for that insurance call to come so I can get some help, yikes!

    Sorry to blab on and on, but i think this is a great place to talk about everything that might be related to Mollaret's.

    Also, My lymph nodes have been swollen here or there, some permanently swollen for 2 years now, so I'm pretty good at noticing that "my lymph node itches", then I itch the lymph node and realize how swollen it is. So, this itching is so common for me. Like I will sit there and itch a lymph node over and over. I figured that my lymph node was fighting a battle and even though my lymph-node-condition was overall getting worse, I felt like this itching was a lymph node fighting a battle with an infection, that the lymph node was still kind of winning.

    But when the "episodes" (seizure) began and mostly when they were over and still, i have this extreme itching inside of my brain and in my neck. It's like so itchy! i just sit there and itch my head constantly. Like the burning-brain on fire feeling is now gone but now it's itchy. I think that it's only right for my brain and neck to be itching after such an infection. The itching itself is so interesting to me because of how severe it is. I never thought of itching as a real symptom, but wow!

    to complicate things a little bit more, i was on tons of antibiotics, many different kinds, because at first we were sure that I had a severe tooth infection that was causing the meningitis-type symptoms. Sometimes, i swear they helped, but isn't that impossible. I guess not because, i did have a dental infection so treating that would help my overall situation get better more quickly. Wow, it is just so complicated.

    And, i thought it was hard to get an Appendicitis diagnosis and removal. But this situation makes that look like a cake walk.

    Which I'm eventually going to tell you about my horror-appendectomy story because then you'll understand me and doctors, better!

    Talk to you tomorrow because as you know my neck is killing me and i need some rest, to be able to post such descriptive replies.

    Goodnight for now.
    Last edited: Oct 11, 2011
  17. La Luna

    La Luna Member

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    Okay, so I've been tested again and I only have HSV-1. I didn't mention meningitis because I didn't want to scare the doctor or get sent to a hospital. I got the Acyclovir I was wanting. I got it from Planned Parenthood. I'm having the worst OB in my mouth and all down my throat. So, I didn't have to lie, I just didn't mention the meningitis. I told them about my mouth having a bad OB and they couldn't look into my mouth (they aren't allowed?) Anyway, they gave me a years worth of Acyclovir or at least they wrote the prescription. I bought Acyclovir from them, I walked away with it. I was so happy!

    I've taken a few of the pills and my neck is already less stiff! I'm feeling better from the inside out. But my mouth is still full of sores (blisters). So, if it gets worse, I'll probably have to go to the hospital. But for right now, I can breathe. It's amazing. Acyclovir is a miracle! I'm so happy to have it! Even my lymph nodes hurt less! Wow!
  18. Here2Share

    Here2Share Member

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    Happy to hear you have gotten some relief! My first OB landed me with a mouth, throat and genital region full of lesions! It sucked. I felt like I had the worst flu I ever had without a fever! I couldn't move my neck. My glands were so swollen I couldn't open my mouth and looked like I had kiwis on my neck! It was bad. I took Valtrex for 10 days and it cleared it up!

    When I was pregnant 2 years ago I had viral meningitis. I had a fever, extreme stiff neck, horrible, horrible, weird headache and ached all over my back and body. I didn't let them do a lumbar puncture because I didn't want to risk hurting my son because even if they diagnosed it there wasn't anything they could do. Tylenol and fluids is what I had to help!

    I read about the damage the seizures has done to you... hun, you really need to see a professional neurologist. The brain is not something you want to mess around with. It's the central computer to our bodies! if it goes, we go! That'd be first on my list. Idk anything about Mollaret's Meningitis but any type of seizures isn't normal. As soon as you get your insurance, please go see a neurologist! Mental hugs! Get better asap!
  19. La Luna

    La Luna Member

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    Wow, it's been like 6 months and I still have sores in my mouth. (they haven't moved) they look different from the cold sores that I used to get and the whitlow on my fingers) (probably because they are in my mouth). My neck lymph nodes have started giving me some real problems. (they all swelled up and stayed swollen). But the lymph node in my right breast (where it all started) is no longer unbearably painful (thanks to the acyclovir). I know that I need to see a neurologist and I'm working on it every day. The first type of insurance I tried turned me down (Social Security Disability). People have told me that I should contact a lawyer since I'm being affected so bad that I can't leave the house, I definitely can't drive. I'm living life day to day, taking 3 kinds of pills, which I never wanted to do but hey I feel so much better now than I did when my neck was too stiff to look up, down or side to side. I feel so much better being able to breathe! And I've only had a few seizures and I'm so used to them, they weren't as bad as my pre-acyclovir seizures. I'm not out of the woods yet! I know I need medical help. I am trying so hard to get it. I'm probably just going to go to the hospital, I'm sure they won't turn me away with herpes whitlow all over my fingers and sores all in my mouth. But it's hard to convince myself to go, I'm still getting bills for the last time I went, when all I got was muscle relaxers. (Which have been a lifesaver). I seem to be the only HSV positive (with possible meningitis/encephalitis) person that I've met that's taking muscle relaxers. I don't know why since it's helped me sooo much. I can actually look into my telescope without extreme pain and I can use the computer without paying for it for days. My life is so much better than it was when I spent months in the dark, alone, scared, not knowing what was happening to me. More doctors need to be aware of aseptic reoccurring viral meningitis as well as herpes encephalitis. I would never let someone suffer, if they came to me for help. I question the motives of many medical professionals. But my primary care doctor, is very supportive. He wants to help me and he tries his best. I just have no clue how I can afford a neurologist at this time. Some people who have confirmed herpes viral meningitis have had bad experiences at their neurologist. So, I think I'm going to end up trying the hospital again as a next step. In the past when I've gone to the doctor, I've never had a visible blister, only swollen lymph nodes. Now I have something to show them, that might make them take me seriously! Not everybody will have such a weird case of hsv, but if they do, I don't want them to have to go through what I've been through before they get help. Do you know that some emergency room doctors don't even believe that there is such a thing as aseptic reoccurring viral meningitis!?!?!?! That's scary! To make matters worse, the hospital that I have to go to tried to give me a hysterectomy and wouldn't believe that my appendix was giving me any problems because "my blood tests looked okay to them". Well, when I finally did get my appendix removed, my surgeon told me that my appendix was located in a strange spot and that it was clearly irritated and the obvious cause of pain. So, I've been through this before... That is, trying to get help and getting turned away, countless times.. At least then I had good insurance and was able to get a bunch of tests done. I had a "lower GI" done at that time and the doctor couldn't even find my appendix, he said he was shocked. So, it doesn't surprise me that my appendix was in an unusual place. My mothers was too. FYI, I knew it was my appendix that was hurting so badly, because it runs in my family. My mothers burst and my great, great grandmother died when hers burst. My mother had to have a bunch of her intestines removed and an ovary because of the poison from her appendix that had burst. She's very lucky to be alive. Then 3 of my cousins appendixes have either burst or been taken out. At the hospital, they told me based on "feeling with their finger" that I have Endometriosis and needed to have a hysterectomy because my ovaries were huge, which my surgeon later confirmed, was not the case. She said that my ovaries and uterus were perfect! :) << Good news! A few months after the surgery and all the pain was gone! I call my surgeon an angel who saved my life! So anyway, it's hard to go to the hospital with all of the issues that I've had at hospitals but I know that soon I will have to.

    Still, thanks to the pills I'm on, I'm getting so much stuff done that's been piling up on me. I really feel alive, the pain is so much more tolerable! I'm even gaining some weight back and looking more normal! I've even gone shopping a few times! It's great! I can hardly believe how much better I feel! It was so scary to not be able to breathe! Now I only feel that way during a seizure. Oh yeah and I have a big huge lymph node behind and just under my right ear, even though my lymph nodes are swollen on the left side of my body as well, and I have herpes whitlow on my left fingers, everything is much worse for me on the right side of my body. But I won't read too much into that because it was the left side of my neck that was swollen huge! And the muscle was hard as a rock, so the "emergency doctor" gave me muscle relaxers and sent me home.. I just can't get over how that cost me over $3,000.00 and counting. They just keep sending me bills!

    I will keep you all updated because I want to help people who may have rare complications from HSV like I do. And one thing that I know for sure, is HSV is different for everybody, no matter what.

    I'm so happy to have found this forum and I thank you all for your support!
  20. CDFPC

    CDFPC Active Member

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    I had to chime in here. In 1997 I came down with viral meningitis and I was hospitalized for 8 days because it was so severe, it almost killed me. The Dr.'s gave me too much morphine for the pain I was in, and I almost went into cardiac arrest because of it.

    In 1998 I came down with viral meningitis again, almost a year to the day that it had happened before. I was hospitalized for 5 days and released.

    Fast forward to 2008. I came down with viral meningitis yet again! I was hospitalized for another 5 days and released.

    Now this entire time, no doctor could tell me why on gods green earth I kept coming down with meningitis.
    For years, I've had an extreme fear of headaches. Still do!

    Now fast forward to Christmas 2011. I had my first OB and was later diagnosed as having hsv 2.

    Mind you, I have been in a monogamous relationship with the same man since 1998.
    Before that time, I was with a jerk who cheated on me, and this was about the same time I came down with my first bout of meningitis.

    My current guy just tested positive for hsv2. In all honesty, I think I have contracted it by my cheating ex, and gave it to my current partner.

    I have NO DOUBT in my mind that all my many bouts with meningitis was caused by hsv.
    Nothing else could possibly explain this. No doctor could and I have done a ton of research on WHY I keep getting it. Hsv is the only conclusion I've been able to come to.

    That's my story, and my 0.2 cents.
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