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Constant cystitis feeling

Posted , 5 users are following.

jenni51978
jenni51978

Hoping someone can understand so I feel like I'm not going mad.

I've had hsv2 for most likely 10 years, but had my first bad outbreak 5 years ago. On and off for a few years after I've had the occasional mild outbreak, but for the last 2.5 years I've had prodrome symptoms every single day.

Tingles, tickle crawly feelings down there, hot and cold feelings, peripheral neuropathy, splits in the skin, watery discharge daily and that's just down there. I've also had widespread neurological itching, some burning patches, mild encephalitis symptoms affecting muscle coordination and slurred speech, and intermittent ear pain which many Hsv(1?) sufferers complain of.

For the last 6 months I've had a new problem... crazy urinary retention with a constant mild feeling of burning or pressure like I need to pee all the time. I had it for months, then it disappeared for a couple of weeks, but now it's back (doctors tested for uti which was negative several times).

I'm feeling more and more affected by this all the time and no antivirals seem to work (tho I'm on valrex suppressive treatment at the moment and when I take a break it gets worse).

Can anyone suggest anything I can do now? I'm really desperate, I don't know how much more I can take. I used to be happy and always smiling, now I have bipolar due to the ongoing issues, and I'm really low. Im 32 and once again an putting off trying for a baby as I feel it's effecting every area of my body so I'm scar s of interuterine herpes getting to the baby. My bipolar is now starting to effect my marriage too because I'm so bad during the lows (which coincide with symptoms at their worst).

Please help! sad

0 likes, 14 replies

14 Replies

  • FelizCastus
    FelizCastus jenni51978

    Posted

    If it's caused by herpes, daily suppressive therapy should help, otherwise the cause may be something else. What dosage are you taking?

    • jenni51978
      jenni51978 FelizCastus

      Posted

      I'm taking 400mg twice daily. I've been on that or about 6 months, but before that I was on the same dose as acyclovir and even tried famvir, but they don't really work. All the antivirals help keep things to a minimum or else it multiplies even faster, but they don't stop the prodrome symptoms and the random symptoms on different parts of my body. I know it's herpes, and nondoctor or specialist have been able to give me any explanation they just shrug. They all say if I get pregnant it's unlikely the baby would be effected internally, but I feel like it's all through my body now. I'm praying Bill Halfords Theravax passes its trials and is available soon, the depression is becoming really bad now

    • jenni51978
      jenni51978 claire72593

      Posted

      Have you seen the doctor Claire? Any diagnosis? How does it make you feel, are you just getting on with things or does it effect you a lot?
    • claire72593
      claire72593 jenni51978

      Posted

      Hi jenni, i am at my wits end with it affecting my life everyday, most frustrating no one believes you can suffer from ongoing problems. Awaiting neurologist.appointment and pain management next. I am in uk wbu?
    • jenni51978
      jenni51978 claire72593

      Posted

      I'm in the uk too Claire. I hope the neurologist listens and offers some advice. I've not had any luck, and be seen doctors, neuros and gyno's and all of them do two things... lol ok at my blankly and have no answers; but also tell me it wouldn't be herpes because the antivirals would work. They're wrong, I know prodrome symptoms from the early days when antivirals did work. It's become resistant to them that's all. It's resistant to all meds, and I've read a lot online where people have these problems too, and it's all hsv related. It's a nightmare. I'm trying to get on with life, but it's worn me away to nothing now, I'm not the same person I was and I'm very angry almost all the time. I really hope Theravax passes its clinical trials, just living in hope right now. I hope your appointment helps and they don't dismiss you

    • FelizCastus
      FelizCastus jenni51978

      Posted

      If you have access to pcr swab testing for HSV2 (you'd need to go private if in the UK), you can do an internal swab whenever you feel you are having a herpes related issue in the area. If positive, then I guess the symptoms you have are attributable to herpes. If negative, however, they may not be. Basically, if the herpes virus is flaring up enough to cause issues, you'd expect it to show up in a sensitive swab test like pcr. Maybe that will help guide you.

    • jenni51978
      jenni51978 FelizCastus

      Posted

      Thanks for your advice, I asked the doctor weeks ago about getting a pcr test and she said she'd look into it and let me know. I've heard nothing, so going to go back tomorrow. Even if it's positive tho, they couldn't do anything anyway cos the antivirals aren't working enough. I wish drs would take this disease more seriously and try to understand it more

  • claire72593
    claire72593 jenni51978

    Posted

    Gyno told me recently that she doubts neurologist can do anything probably just pain management. Im on pregablin gained a lot of weight on itsad
    • jenni51978
      jenni51978 claire72593

      Posted

      That's not good, are you on any antivirals either tho? I've found they help to an extent but still constant everyday symptoms which creep about

  • annita43570
    annita43570 jenni51978

    Posted

    Jenni, you can be sure you it is the herpes which is causing all that to you. I had the exact symptoms. I saw two infectologists in Brazil and they both told me it was the herpes I and II. I got totally cured with a herb from Arizona. It is called CHAPARRAL... It is manufactured in capsules in the US where I am. Here is the link https://www.swansonvitamins.com/arizona-natural-chaparral-500-mg-180-caps?otherSize=AN024&DFA=1&UTM_Medium=Shopping&UTM_Source=GOOGLE&UTM_Campaign=SWAN_National_Gen_Shopping_Null_Null_All+Products+4055-01+Immune+Support&UTM_Content=PRODUCT+GROUP&SourceCode=INTL4055&gclid=CjwKCAiA1uHSBRBUEiwAkBCtzXwJzD_pwUXOg_VlUKPAq29Ht49C-TXE3kvePdEFpoF8tus8orSvOhoC1ioQAvD_BwE[/b] I was thinking that maybe you don´t get any better with the common antivirals because you are eating foods that contain high amount of arginine. I don´t know... But rest assured you will get cured with CHAPARRAL. I have a friend who had the same symptoms and she too got cured. There is also something called BLACK SEED OIL. Everybody says it cures herpes but I have not tried that. Hope you will be able to get it since you are in the UK. Please let me know if I can be of any help.

  • annita43570
    annita43570 jenni51978

    Posted

    I forgot to mention that his kind of herpes is not contagious at all. Your baby will not be born with it. Also, cistitis, gastritis, esophagitis and gum infection are all due to herpes. Doctors told me that urine tests will never show any bacteria. It is a shame most of doctors do not know that. It took me a long time until I found those doctors in Brazil. Everybody was already thinking I had cancer all over. I could not get out of the bed until I started taking acyclovir and cut off lots of high arginine content foods. But only when I met a native of the Hopi tribe in Arizona I discovered Chaparral herb. 
  • annita43570
    annita43570 jenni51978

    Posted

    I wrote a previous message with a link for the Chaparral herb which cured me for good in two weeks. I guess the message is not showing yet because it needs moderation, maybe because it contains a link to buy it. I know you are in the UK and Chaparral is only available in the US. Please let me know if I can be of help if you are unable to get it through the companies which sell it here. After you get cured you will be able to eat again all those delicious food high in arginine which cause herpes, like dark chocolate, seeds, nuts, orange, etc.
  • victoria60272
    victoria60272 jenni51978

    Posted

    Hi Jenny!

    Just wanted to know if you had any answers about this issue? 

    Suffering from same thing for about four months now. 

    I appreciate if you could share some info.

    Thanks!! 

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