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cracked

I’m done

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    This might be a rant for me to just blow some steam, but I’m almost 3 months in and exhausted of everything. I still don’t know if I have this damn virus or not since I apparently was in the false positive range when I was tested in August and now the only place I can go to at the moment is a hospital since I have some financial help from them due to not having health insurance. All of the specialists like urology, infectious disease that I have to wait a month in between to see keep brushing me off and dismissing my request for a 2nd std panel now that it’s been 8 weeks. I keep getting UTI’s and have yet to come across a guy on this site that mentions anything similar to my problem. My urethral meatus is scaring the shit out of me because it keeps getting red and then less red and looks abnormal as hell now. I can’t even fucking masturbate anymore without it hurting in the end or having some sort of consequence the next day. How the hell can HSV even cause anything like that?! 3 months in and I still can’t get anyone to help me get back to having the normal life I should have and no doctor wants to diagnose me with an actual problem despite me having all these crazy ass gastrointestinal, urinary, respiratory, and even cardiovascular symptoms. I have always been a healthy individual with almost 0 health problems and I can’t even wake up every morning without urinary problems or feeling like complete shit. Being diagnosed with this paleolithic virus and at the same time getting all this crap is making me physically and mentally unstable. I’ve never in my life ever had thoughts of just disappearing completely or harming myself to end all this until now, but this is ridiculous. If this is HSV’s doing then I don’t know what damn strain I must’ve gotten to be dealing with all this. I’ve been tested for HIV as well as the person I was with and both results were negative. None of this makes any sense!

    Edited by cracked

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    I'm so sorry you're going through all of this. I totally feel your pain and frustration. I am so frustrated with the system and the lack of reliability with the tests. I had negative results come back yesterday but I don't believe them, so waiting for my second swab. I just can't believe in this day and age they don't have better tests for this. Anyway, I am sorry this has caused to many other problems for you beyond the regular expected symptoms - that sounds awful. I hope you feel better soon and can soon have some understanding of what's going on.

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    Did you also get tested for clamydia and gonorreha? I don't remember. 

    Maybe you have some other STD?  Its more difficult for men to get UTIs but not impossible.

    But wait for 12 or 14 week for next test for HSV so you can be sure its not that so you can not have to get another test.

    You sound super stressed. Try some stress reducing things. exercise or supplements maybe? 

    Hugs your way!

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    Cracked. Hang in there brother I'm here for you. I don't think it's hsv. But I don't know why doctors can't or won't diagnos you

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    1 hour ago, IcantThinkofaName said:

     

    Did you also get tested for clamydia and gonorreha? I don't remember. 

     

    I did, 2x now with my urine samples and it was negative for both. Syphillis on the 1st test was negative as well as Hepatitis B. I don’t know what other STI I can have if it’s not those.

     

    1 hour ago, IcantThinkofaName said:

    You sound super stressed. Try some stress reducing things. exercise or supplements maybe? 

    If I try to work out I feel weakness and I’m not much of a supplements person, but have been eating multivitamins and probiotics, but don’t see much improvement.

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    47 minutes ago, Micah said:

    Cracked. Hang in there brother I'm here for you. I don't think it's hsv. But I don't know why doctors can't or won't diagnos you

    Thanks brother I’m hoping for something to happen soon so I can at least live in some decent way even if it is HSV instead of all of this daily feeling of being crippled.

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    I am going through something so confusing that cannot be detected by  typical lab tests but the symptoms are there even when the drs tell me I am fine, just getting older. It has allowed HSV2 to be overly active when it was under control for most of my time dealing with it. drs are just learning about this but do not really understand/acknowledge it as the symptoms are so abstract in each individual.

    Look up Sibo and also Histamine Intolerance.

    Histamine Intolerance does affect the heart, skin, lungs, stomach and bowels. All triggered by food, environmental toxins and even smells. Have you noticed a heightened sense of smell where things bother you that never did before?

    Not saying this has anything to do with your problem only giving a direction to look as only you know your body and the weird symptoms you are going through. Perhaps your body was dealing fine with something you knew nothing about until another something was introduced to trigger so much reaction.

    I never saw it coming and only my ND acknowledges and treats it! I hope this is not your problem!

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    2 hours ago, cracked said:

    I’m hoping for something to happen soon so I can at least live in some decent way even if it is HSV instead of all of this daily feeling of being crippled.

    I feel you. 100%

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    50 minutes ago, SureWhyNot said:

    Look up Sibo and also Histamine Intolerance.

    Now that you mention it that might explain a lot. I could have SIBO since I had a lot of problems while in India as well a few months ago and things just haven’t been the same since...

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     maybe a parasite of some type  if you  are/were in India? I caught some funky things when I was there.

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    2 minutes ago, IcantThinkofaName said:

     maybe a parasite of some type  if you  are/were in India? I caught some funky things when I was there.

    I certainly hope so, but having to wait so long for these doctors appts and then just being dismissed when asking about other possibilities is just making me lose hope every day. Like right now I haven’t eaten much all day but then it feels like i’m pretty full still. Before all this happened I could eat up to 6 meals a day :(

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    22 minutes ago, cracked said:

    I certainly hope so, but having to wait so long for these doctors appts and then just being dismissed when asking about other possibilities is just making me lose hope every day. Like right now I haven’t eaten much all day but then it feels like i’m pretty full still. Before all this happened I could eat up to 6 meals a day :(

    Hello my brother,

    You are young in this and your body is still adjusting. I had the same symptoms. I could not eat more than a few bites and feel full. It is called gastroparisis. HSV can trigger auto immune issues and vagus nerve issues. It will take a couple months but your system will stabilise after awhile. Don't kill your self. Not worth giving up. Hang in there things are in the works to help!

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    16 minutes ago, Seeker1960 said:

    Hello my brother,

    You are young in this and your body is still adjusting. I had the same symptoms. I could not eat more than a few bites and feel full. It is called gastroparisis. HSV can trigger auto immune issues and vagus nerve issues. It will take a couple months but your system will stabilise after awhile. Don't kill your self. Not worth giving up. Hang in there things are in the works to help!

    Are you sure things will stabilize? I’m getting pretty tired of all this. Do you know if HSV has ever been able to permanently cause penile nerve damage or any other peripheral nerves? I can’t seem to get aroused anymore unless it’s forced, which I never had to do before.

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    I am dealing with similar issues and have been some mid September.  my nerves is what bothers me the most, night sweats, inability to sleep...when do things stabilize?

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    I'm sorry to read your post. I understand. My first months were nightmare. My healthy body turned to wreck - I had problem with peeing, I couldn't poop, eat, sleep, I was in pain, getting fevers .... I wanted to die. It took me 6months to feel normal again. I still have some issue, but I climb mountains again. Don't hurt yourself, take care of yourself. Wishing you the best.

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    3 minutes ago, MoniqueLow said:

    I'm sorry to read your post. I understand. My first months were nightmare. My healthy body turned to wreck - I had problem with peeing, I couldn't poop, eat, sleep, I was in pain, getting fevers .... I wanted to die. It took me 6months to feel normal again. I still have some issue, but I climb mountains again. Don't hurt yourself, take care of yourself. Wishing you the best.

    How are you doing now? Is this just the first OB we are dealing with?

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    21 minutes ago, rgreen said:

    How are you doing now? Is this just the first OB we are dealing with?

    I don't have typical OBs. Mostly just lower back and hip pain, sometimes UTI like symptoms and constipation. I hope the worst phase never returns. I feel normal again most of the time. I'm scared of future, pregnancy, infecting partner,...but happy to have my health again and willing to enjoy the life again. 

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    13 hours ago, cracked said:

    I had a lot of problems while in India as well a few months ago and things just haven’t been the same since...

    This Is very important information. Ever watch the tv show Monsters Inside Me? Even the best drs or specialists take time to get to the root of dis ease. We are lucky to survive on this planet! Everything we eat or are exposed to is important information to consider when our system goes awry. Again, not saying you have leprosy or something that horrible but we blame HSV for everything when we hear that diagnosis which makes us look past the thing that triggers the HSV.

    I have no medical training and not trying to diagnose, I just hope you can step back from the edge and the panic to become the detective you need to help yourself as much as possible. HSV is manageable with the right knowledge and teaches how to care for the body. 

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    Thank you everyone for being encouraging. I just wish like some other viruses we have inside of us that this was also benign and asymptomatic so no one had to go through this purgatory like suffering or have contemplating thoughts on life.

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    12 hours ago, cracked said:

    Are you sure things will stabilize? I’m getting pretty tired of all this. Do you know if HSV has ever been able to permanently cause penile nerve damage or any other peripheral nerves? I can’t seem to get aroused anymore unless it’s forced, which I never had to do before.

    Generally speaking it takes a few months for you body to learn how to deal with virus. It took mine about 8 or 9 months. I dont believe the nerve damage is permanent in the sense like how MS damages nerves. Nerves can recover over time. In our case though are nerve issues are directly related to viral activity. A friend finds he gets some relief after taking Valacylovir awhile. Give you body chance to bounce back and adjust. You should see some improvement ofbyour symptoms over time. 

    Be advised that you are going to be told that your symptoms are not related to HSV and that there is another unkown cause. I know that my symptoms a result of my HSV infection. 

    Hang in there. There will be something to come along to give us relief. A lot a things are being worked on so don't lose hope. Dont think your future will always be like your present situation. Yes it sucks to have this virus but live is worth living and you will learn to work around this and have a good, happy and full life.

     

     

     

     

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    39 minutes ago, Seeker1960 said:

    A friend finds he gets some relief after taking Valacylovir awhile.

    I haven’t taken antivirals except for 13 days total and I couldn’t seem to figure out if the valacyclovir helped me or not. I’m also not much of a pill person and tend to let my diet and juicing try to handle any problems I have, which has always worked in the past. I’m not sure if this is going to fall into that category though. 

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    1 hour ago, Seeker1960 said:

    Generally speaking it takes a few months for you body to learn how to deal with virus. It took mine about 8 or 9 months. I dont believe the nerve damage is permanent in the sense like how MS damages nerves. Nerves can recover over time. In our case though are nerve issues are directly related to viral activity. A friend finds he gets some relief after taking Valacylovir awhile. Give you body chance to bounce back and adjust. You should see some improvement ofbyour symptoms over time. 

    Be advised that you are going to be told that your symptoms are not related to HSV and that there is another unkown cause. I know that my symptoms a result of my HSV infection. 

    Hang in there. There will be something to come along to give us relief. A lot a things are being worked on so don't lose hope. Dont think your future will always be like your present situation. Yes it sucks to have this virus but live is worth living and you will learn to work around this and have a good, happy and full life.

     

     

     

     

    8 to 9 months...seems like a life time. What did you experience during this time fever, shooting pains, physical outbreaks...do they lessen in time up until within 8 to 9 months they are no longer bothersone and painful?

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    I had a variety of things happen. Starting with and itch on my scrotum that developed into extreme burning. I got night sweats and all over electrical shock feelings. The autonomic dysfunction started with gastroparisis, orthostatic hypotension, nueropathy in my legs and pudendal nerves. A few other things like twitching muscle in the face and legs too. Things are much better 22 months later. Still get burning and itching in the genitals some other milder nueropathy in the legs and hands. I have a full appetite again and regained the weigh I lost. 

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    I am at 9-10 months post infection and I can say things are way better ( from getting OBs every 2 weeks in July/August). I quit drinking coffee. I think that helped.  I have not been taking any Valtrex either since early July. 

    St Johns Wort extract and some other herbal supplements I also attribute to making things generally better physically and mentally. I am 7 weeks OB free, the longest ever. I still sometimes have some nerve pain(hip pain) and tingling, raw/burning and weird stabbing sensations in genital area I know for sure are from HSV, but its better than the sores. I am sure I am still contagious but I'm not having any sex anyway.  Maybe someday:(

    I had twitching in face(eye) too but I attributed that to adrenal fatigue 

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