New here but with atypical herpes symptoms

[Bloomer]

Hello everyone! I am new here but not new when it comes to HSV infection. 

Just wanted to introduce myself and share my story hoping I will get feedback from someone who has similar experince.

I have genital infection for a long time and according to all medical criteria I am healthy and immunocompetent individual but again had really hard time dealing with this horrible infection. For several years I was misdiagnosed and treated for constant UTI's although my urinocultures always came clear. Doctors never even consider to test me for HSV infection. And then in 2015 I was diagnosed with transverse myelitis caused by HSV 2 infection which was life altering experince. I never fully recovered and since then suffer from daily nerve pain in my pelvc floor area. During the span of 20 years I only had two classical outbreaks, with outbreaks appearing on both of my inner thighs. The strange thing is that I am not testing positive through blood tests but have positive PCR swabs and positive spinal tap which was taken during my myelitis episode. I have heard from few other people that they have same experince but specialist can't explain why is this happpening.

I am now pregnant and my nerve pain is even worse than before. I suppose it is because of increased viral activity due to hormonal changes. I am really afraid what will future bring especially after childbirth as we all know that childbirth has huge impact on woman's body and immune symptoms. Acyclovir does nothing for reducing viral activity so I am not taking them anymore. I was putting all my hope to Pritelivir but was disappointed to hear it will be only approved for immunocompromised patients and as I said according to all medical criteria I am not one of them.

I am tired of listening that this is just a skin condition because for some of us it's not. It is nerve condition and can have serious impact on human CNS and peripheal nerve system. I agree that society puts huge stigma around this infection. It is totally unffair. But again I don't like minimising effects of this infection done by medical community which is in fact so misinformed when it comes to HSV. 

My hope is to raise awereness and education about this infection. Only with this we can reduce stigma and lower prevalence of HSV infection in society. 

Thank you for reading! 

[Flowerteacher55]

Hello,

Congratulations on your baby, and thank you for sharing your story with us! 💛

I am so sorry that you experienced undiagnosed medical opinions and a lack of competency when it came to getting your diagnosis. The fact that this went undiagnosed for so long is most likely what contributed to the transverse myelitis (for those who do not know, transverse myelitis is inflammation of the spinal cord). I cannot even imagine how painful the myelitis was, and the nerve damage it caused must be painful, too. 

Pregnancy changes the body in so many ways. As the baby grows, organs shift and more weight is placed on the bones and spine, which could contribute o nerve pain. Plus, GHSV-2 lives in the nerve bundle at the base of the spine, and I'm sure having a tiny human growing in your pelvic area doesn't help the nerve pain! 

As I'm sure you know, the doctor will deliver the baby via cesarian if you have an active outbreak/prodrome symptoms to prevent the risk of transmission to the baby. Sometimes people decide to take suppressive medication a little while before the due date to help reduce the likelihood of shedding the virus, but you said Acyclovir doesn't help.

You could talk to your OBGYN or doctor about trying Famcyclovir or Valacyclovir, as sometimes people have better luck trying one of the other types of antivirals of one doesn't work for them. Also, you can take intravenous antivirals, which may significantly help you, since IVs bypass the digestive system and go straight into the blood, or can be injected closely to the point of infection. You could ask your doctor about these options as well. 

Stay strong! You are a warrior ❤️ 

Thank you again for sharing your story, as so many people can relate to having the medical community dismiss their pain or symptoms, and/or have also experienced changes with their HSV symptoms while pregnant or while having hormonal changes occur. 

Congratulations again on your baby 🍼🕊️💛!! I am praying for you and your family!! 

Blessings,

grace

[Bloomer]

Flowerteacher55 thank you very much for your kindly reply and thank you for your good wishes. 

As you said, being misdiagnosed for so many years probably had a huge impact on getting transverse myelitis. If I treated my condition from beginning and applied self care and lifestyle changes I probably wouldn't end up with myelitis. That experience changed my life and I truly hope I will never experince that again. My main fear is getting myelitis during pregnancy and after birth and that it would be fatal for me. I was suprised back than in 2015. when infectious disease doctor told me that around 40 percent of all cases of transverse myelitis is caused by herpes simplex viruses. I was shocked and scared to death. The funny thing is that I have oral HSV 1 since I was a child and never had any issues.

I live in Europe and medical community here is so easy going when it comes to HSV infections. The last doctor I visited and who specializes genital infections never heard about viral shedding. She told me I can have sex with my husband if I don't have outbreak. 🤦‍♀️

I am terrified of passing this to my husband. He is love of my life and I disclosed at the beginning of our relationship of course. He loves me no matter what and is my biggest support. I've read somewhere that person you infect will have the same course of infection as you do. After reading that I become paralized in fear and that of course puts a certain havoc on our intimate relationship. 

Thank you again for your repy, it is comforting to receive support. 🙂

 

[Bloomer]

And more thing I wish to add.

My intention is not to scare people. Most of the people have mild symptoms and my experience is not the norm when it comes to HSV infections. But complications do happen and that's why we need to talk about all aspects of HSV. I too wasn't really informed with HSV, didn't know any facts about it to be precise since this infection is obviously tabu theme in Europe. 

 

[Flowerteacher55]

Hi!

No worries at all! You aren't scaring people; this is an open space for people to share their experiences and provide support for others! Please don't hesitate to share things! 🙂 

So do you have HSV-1 and HSV-2? Is this caused by GHSV-2? Many people, children and adults, have oral HSV-1 which presents as cold sores/fever blisters. They are common and 2/3 of the world has oral HSV-1! 

When it comes to passing HSV to your husband, find comfort in the fact that he accepts and loves you regardless. You may feel like you are dangerous, but you are safe. You are not a danger to your husband. 

If you are afraid of passing GHSV to your husband, you could always lessen the risk of transmission by using an internal or external condom, monitor prodrome symptoms and even track them (similar to how periods are tracked). You could see what your triggers are and write down when you feel an outbreak coming on and then track how long it lasts, what happened before or after the outbreak, etc to see what could have triggered it and what solutions help things heal. 

Be kind to yourself ❤️ This is not your fault! You are doing wonderful at making your health a priority, and it's great that you advocate for yourself to doctors!  

We are here for you! Reach out anytime! 

 

[Bloomer]

@Flowerteacher55 yes, I have HSV 1 and 2. HSV 1 never caused me trouble. My transverse myelitis was caused by HSV 2. I really don't know why it caused so much trouble. During my stay in hospital, they did almost every test as they thought I was immunocompromised but everything came back clear. I was tested also for all kind of autoimmune conditions, vitamine deficiens etc. Everything was ok. Infectious disease doctor didn't have explanation, he just said is sometimes happens and that he saw this already in his career.

During my research and reading all kind of scientific journals I found that there are different strains of HSV 1 and HSV 2 and that some of them are more neuroinvasive than others. Maybe that's explanation why I have such a difficult time with infection.

What bothers me the most is the fact that most doctors are clueless when it comes to HSV infections, they all say it is just skin condition. It is skin and nerve condition. The thing is that nobody actuallly knows nothing about these viruses and we have really, really limited options when it comes  to treating this infection. I've met several people who for years had really classical presentation of infection and then after many years started having neurological complications etc. The modern medicine doesn't have answer for this. They can only offer you antivirals which are inneffective for some people and more and more individuals are developing resistancy to antivirals. 

All I wanted to say is that we need better doctors and better treatments. Oh, end of course testing which If you aak me should become regular and available for everyone. 

[Step1LoveYourself]

8 hours ago, Bloomer said:

@Flowerteacher55 yes, I have HSV 1 and 2. HSV 1 never caused me trouble. My transverse myelitis was caused by HSV 2. I really don't know why it caused so much trouble. During my stay in hospital, they did almost every test as they thought I was immunocompromised but everything came back clear. I was tested also for all kind of autoimmune conditions, vitamine deficiens etc. Everything was ok. Infectious disease doctor didn't have explanation, he just said is sometimes happens and that he saw this already in his career.

During my research and reading all kind of scientific journals I found that there are different strains of HSV 1 and HSV 2 and that some of them are more neuroinvasive than others. Maybe that's explanation why I have such a difficult time with infection.

What bothers me the most is the fact that most doctors are clueless when it comes to HSV infections, they all say it is just skin condition. It is skin and nerve condition. The thing is that nobody actuallly knows nothing about these viruses and we have really, really limited options when it comes  to treating this infection. I've met several people who for years had really classical presentation of infection and then after many years started having neurological complications etc. The modern medicine doesn't have answer for this. They can only offer you antivirals which are inneffective for some people and more and more individuals are developing resistancy to antivirals. 

All I wanted to say is that we need better doctors and better treatments. Oh, end of course testing which If you aak me should become regular and available for everyone. 

Hi Bloomer,

 

I appreciate the thoughtfulness in your posts spreading hope and light to others. A tool I have been using that really helps with cold sores and other scarring is a LED red light device called Luminance Red. It helped decrease the longevity of my outbreaks and healed exposed cold sores entirely. For awhile I was dating a person without an STD and it was pivotal in protecting her from my STD as well as reassuring her mentally. Hope you have a good day!

-dan 

[Flowerteacher55]

Hello,

I hope you are doing okay ❤️ 

It is so scary that you were hospitalized for the transverse myelitis. It is good that you got a diagnosis, and that they ruled out other possible infections/illnesses.

You are totally right... there is a lot of disconnect with HSV and the medical community. I mean... since so many people have HSV, isn't that all the more reason they should be researching it and finding treatments?!

Stay strong and keep us updated!

Blessings!