Accessing Western blot from UK

[21081976]

Hello

im struggling massively. I can’t cope anymore. After an unpleasant sexual encounter in 2017 (it felt more like a sexual assualt on reflection) I have remained celibate and have had a myriad of symptoms that seem to indicate I have genital and oral hsv. 
ive had a couple of negative swabs on small hard lump that appeared twice and then resolved on my inner labia.

ive had three sets of blood tests 

hsv1 and 2 LG both negative, hsv1 equivocal and hsv 2 negative and most recently hsv2 positive and hsv1 equivocal. 
First test well after incubation period. 
mom now seeking western blot although this is costly from uk. 
The idea of spending my life alone (I already have mostly up to now due to intimacy issues ) seems cruel and unfair. 
I personally could never risk putting someone through this hell. I just want to hug my friends and play with my nieces without constant panic I will hurt them and bring more shame on myself.

i have experienced a myriad of symptoms 😭😭😭😭😭😭😭

[Flowerteacher55]

Hello ☺️,

I am so sorry for the emotional and physical pain and stress you have experienced. You do not deserve that at all. We are here to help and support you. You are not alone. 

First, you are not a danger. You are not bad. You are not dirty. You are not a hazard to those you love. You are safe. You are clean. You are good. You are a blessing. Nothing could ever change those unconditional truths. 

Second, obtaining herpes from an experience that was inappropriate and assaulting causes such trauma. I have my herpes from someone who was abusive, and it definitely makes me feel frustrated and sad. I have healed a lot, though, and the same is possible for you! Just remember it isn't your fault. At all. 

I am in the US, however it may be possible for you to contact the University of Washington Virology Division and ask them how to ship a blood sample through the mail to their lab, or how you can get a Western Blot test another way. I can look into that for you! ☺️

I am so sorry I am not of more help.

Please reach out with more questions, or if you need support. 

You are never alone.  We are all there for you. 

Sending prayers of healing and blessings your way!!! ☺️

[Lisa2021]

Hey ! 
I am sorry to hear you are having such a hard time.  I am also in the UK I have been using bold tests tomorrow a company called Let’s Get Checked. What is different with the western blot test ? What company have you used for your blood tests so far ? 

[Flowerteacher55]

Hello, @Lisa2021!

That is a great question. 

The Western Blot Test is used as a way to super super accurately test for HSV antibodies. Those who use this test are people who either truly believe they have HSV but have had all negatives tests, or those who believe they have false positive results. It is preformed by the University of Washington Virology Division Clinic. Check it out here: http://depts.washington.edu/herpes/pages/frequently_asked_questions

I hope this helps! 

Blessings,

Grace

[21081976]

thank you so much for replying xx I have been in talks with Terri Warren in the states about my ongoing issues and worries. She helps people from the Uk access the Western Blot which is expensive. I’ve used let’s get checked. Please see my varied results below. 

I’ve described a lot of my symptoms with her and she has given me hope that it might be some thing else. Here are my past test results. I don’t understand why they vary so much. I feel like I’m on a scary rollercoaster of emotions. The sexual incident that all this stemmed from was an unpleasant one and that ties in to things too I think.

I have not had any type of sexual contact since 2017 due to intimacy issues and terrified of giving this to someone. 

March 2020 (three years after sexual contact )
Hsv 1 0.232
Hsv 2 0.500
Company-let’s get checked

March 2021 (four years after sexual contact)
Hsv 1 1.05
Hsv 2 0.500
Company-let’s get checked

September 2021
Hsv 1 0.994(equivocal)
Hsv 2 1.45 (positive) company-the sti clinic online 

I currently have an itchy, crawly feeling around my nostrils and left side of my lips. 

Pain for 3 weeks after sexual incident and small hard lump on inner labia. I rushed to gum clinic. They say negative for everything including sample from lump. 

A couple of large boils inside outer labia that appeared and then resolved

Another small hard lump on other side of inner labia. Returned to clinic.. showed nurse. She thinks it isn’t herpes. I was in such a stressed out state that they referred me through to go who looked all up inside me also but says no sign of anything. 

Had bloods done .. first lot. All clear so relieved and managed to start living building confidence up and focus on career bath.

They over last couple or years ... intense pain up inside vagina and up Anal passage, pain that felt like lightening bolts around my private area.. Pins and needles across buttocks and thighs. And I have had a crawling feeling that has worked it’s way from cbackof head, over top of scalp and down face slowly on and off for past few years. 

I’m devastated as have had so little in the way of sexual encounters my whole life and now any chance of that has been taken away from me by an incredibly unpleasant human who just mocked me when I asked if he had anything. 

I have the following 

Sjögren’s syndrome

Pernicious anemia

Warm regards 🥰🥰🥰🥰🥰🥰

[Flowerteacher55]

Hello,

First, please know you are NOT dirty. You are not bad. You have no reason to be ashamed. You are beautiful, and you deserve positive and healthy relationships and intimacy.

The way others treat you shows who they are, not who you are. The stupid chump who mocked you is a toxic person. They made you feel bad about yourself emotionally and physically. When someone hurts us, we have a tendency to take on extreme guilt and shame. We think it's our fault, and we take on the guilt and shame that the unkind person should feel. 

None of this was your fault. I am so sorry that everything started after that toxic time and moment. I have my herpes from someone who was abusive, and it honestly acts as this looming reminder of how I got it... however, I have learned to heal! You can too ❤️ !

When you first noticed boils, that was probably the herpes. The lump you had could have been a cyst; I have had those on my pubic area before and they just dissolve on their own (very odd!). 

In terms of the all-over testing, were those all IgG blood tests? If so, it seems that you could have HSV-1 (most people do, orally), especially since you mentioned a tingling near/in your nostrils. 

It is very odd that the HSV-2 didn't show up until this month, four+ years later. Hypothetically, it could have taken you this long to build up detectable amounts of antibodies. 

All of the neurological symptoms you are describing could be post-herpetic neuralgia. However, you mentioned you have Pernicious anemia, which can actually cause nerve damage, as nerve cells need B12 to function properly. How long did you have pernicious anemia before receiving treatment, and have there ever been any gaps in receiving treatment?

The intense pain in the area down there could be linked to the pelvic floor muscles; they are actually SUPER important and play a roll in so much of the functioning and health of the anus/vagina/area down there. Also, the pain could be from the neurological issues you are experiencing. Your organs and muscles have nerves, too!

It is great that you have reached out to Terri Warren, what a blessing she is! 🙂❤️ 

I hope this all helps ❤️ 

Stay strong. You are a warrior! We are here for you 🙂❤️ You are in my thoughts and prayers!! ❤️ 

Blessings,

Grace

 

[21081976]

Hi Grace 

I am feeling overwhelmed and confused. Getting the western blot done seems so difficult and with my symptoms is it really worth all that money and energy to just be told I have it.  Do you think I can assume I do from my symptoms and blood results? 
psychological damage of having to remain alone this lifetime is unbearable. I’m struggling to get up and washed and go to work. There is no way I could start dating someone as I have it both orally and down there I could never even kiss anyone without the fear that they will break out in sores. 
I would never damage anyone in the way I have been damaged. 
 

warm regards 

 

 

[21081976]

On 9/21/2021 at 8:05 AM, Lisa2021 said:

Hey ! 
I am sorry to hear you are having such a hard time.  I am also in the UK I have been using bold tests tomorrow a company called Let’s Get Checked. What is different with the western blot test ? What company have you used for your blood tests so far ? 

Let’s get checked twice and the sti clinic online once xxx

[Flowerteacher55]

Hi! 

I am so sorry that you are struggling. Please know that there is hope, I promise! ❤️ You are not tainted or bad or ugly. Herpes does not have the power to cast a shadow over us!

Having herpes orally and genitally may make you feel like you are just contaminated everywhere, but remember, it's society's stigma of the virus that really is what makes us feel this way. There is hope for you in regard to future relationships. You are NOT damaged. As a matter of fact, NO ONE on this forum is damaged in any way. You are perfect, just the way you are. 

There is a poem by one of my favorite poet's, rupi kaur, that says, "how is it so easy for you to be kind to people? He asked. ... "Because people have not been kind to me." 

When we know what it feels like to be hurt, we try and avoid hurting others and making them feel the way we have felt, since we know how terrible it can be. But, that means robbing someone of the beautiful chance to get to know you and love you, and robbing yourself of love. And you deserve love. 

Stay strong ❤️ We are here for you!! 

Sending prayers and blessings your way 🌄

Blessings,

Grace