Questions to Ask University of Washington Virology Division

[Flowerteacher55]

Hello, Friends!

I hope you all are well 🌟🕊️💛

I wanted to ask if anyone else had any questions for the University of Washington Virology Division (who makes the Western Blot test) before I call them to ask questions from friends on the forum!  

Respond here or direct message me know before the end of the week 😊

Thank you! 

Blessings,

grace

[Sonia]

Hi,

I have herpes like 12 times a year, this months it hasn’t stop at all and went on the second round. I cross checked many things, I do not have any AIDS variant, diabetes, not aware of having some latent venerological diseases. But during this check I realized I have celiac disease and also chronically low level of lymphocytes (around 1,1-1,3 all the time).

I was suggested to consult with immunologist/alergologías regarding the reason why I have so many outbreaks (it’s been already 10+ years I have genital herpes).

Would be happy to hear ANY suggestions on how to decrease the number of outbreaks (I eat very healthy, do sports, generally positive, from good, good quality life, no alcohol, drugs, sugar is very limited, taking acyclovir 2000 mg daily, as I have 53 weight). 
 

Kind regards,

Sonia

[Flowerteacher55]

Hello, @Sonia!

I hope you are well. I am sorry to hear about your frequent outbreaks. It is awesome that you take such good are of yourself. Perhaps the inflammatory stress your body was under from your gluten allergy was causing more outbreaks? 

I will ask the University of Washington about links between allergies (specifically Celiac's) to HSV outbreaks, and I will ask them what other lifestyle changes and supplements can help reduce outbreaks. 

I am praying for your health and happiness!

Blessings and Happy New Year to you! 🕊️🌟💛

[RingofFire]

@Flowerteacher55I have several questions. Thank you for doing the leg work!

Studies:

How can we get involved in any studies on HSV testing or vaccines if we don't live in the Seattle area?

Reading Tests and antibody levels:

Why are igG tests so confusing? The higher numbers must correlate with something that has to do with the virus antibodies. The explanation I keep getting is that you may have been exposed to the virus at some point if it's positive. There has to be a difference between a 1.7 IgG positive and a 19.7 IgG positive, otherwise, why wouldn't the test just be a pass/fail, without the numbers?

If antibodies are higher, does that mean fewer outbreaks due to higher immunity?

Viral Shedding:

How is Viral Shedding tested for in lab studies, especially in males where there's no mucous membranes? Is it just a swab(q-tip)?

Does showering reduce viral shedding?

Is there any way to find out your personal shedding rate?

Why are there no HSV shedding kits available for home testing, similar to what we have for Covid?

Supplements:

Are there any supplements that help with radiculopathy from HSV-2?

Outbreak intensity and length:

Everything on the internet says the first outbreak is the worst, but I'm pretty sure I've had one before five years ago. I'm currently experiencing another and it's worse than ever and I've been having symptoms without lesions for 12 weeks. Can the virus be more intense if it lies dormant for many years?

Thanks so much for your help!

 

 

[Flowerteacher55]

Hi, @RingofFire

AWESOME questions! Thanks so much for asking them. I will relay the questions to UW and let you know what they say! I am going to call them after New Year's Day! 

Blessings!

[RingofFire]

@Flowerteacher55 Oh, I thought of a few more questions if it's not too late.

Is there any correlation between IgG test levels and viral shedding. e.g. If your levels are higher do you shed less than someone with levels that are lower?

Is there any correlation between number of outbreaks and your IgG level?

Also, what is the highest possible IgG level on a test?

[Flowerteacher55]

Hello, @RingofFire! 

No worries! It's never too late to ask! 😊

I am excited to get answers to all these questions. Thanks to all who have posted their questions!

[RingofFire]

@Flowerteacher55Have we heard anything back from the University of Washington?

 

[panosM.]

On 29/12/2021 at 7:37 ΜΜ, Sonia said:

Γεια,

Έχω έρπη 12 φορές το χρόνο, αυτούς τους μήνες δεν έχει σταματήσει καθόλου και πήγε στον δεύτερο γύρο. Έλεγξα πολλά πράγματα, δεν έχω κάποια παραλλαγή AIDS, διαβήτη, δεν γνωρίζω ότι έχω κάποια λανθάνουσα αφροδίσια νόσο. Αλλά κατά τη διάρκεια αυτού του ελέγχου συνειδητοποίησα ότι έχω κοιλιοκάκη και επίσης χρόνια χαμηλό επίπεδο λεμφοκυττάρων (περίπου 1,1-1,3 όλη την ώρα).

Μου πρότειναν να συμβουλευτώ ανοσολόγο/αλλεργολόγο για τον λόγο που έχω τόσα κρούσματα (έχουν ήδη 10+ χρόνια έχω έρπητα των γεννητικών οργάνων).

Θα χαρούμε να ακούσουμε ΟΠΟΙΕΣΔΗΠΟΤΕ προτάσεις για το πώς να μειώσω τον αριθμό των κρουσμάτων (τρώω πολύ υγιεινά, κάνω αθλήματα, γενικά θετικός, από καλή, καλής ποιότητας ζωή, χωρίς αλκοόλ, φάρμακα, η ζάχαρη είναι πολύ περιορισμένη, λαμβάνοντας acyclovir 2000 mg ημερησίως, καθώς έχω 53 βάρος). 
 

Θερμούς χαιρετισμούς,

Σόνια

Good Evening !!! Did you finally visit an immunologist / allergologist? I am also thinking of visiting such a doctor because I also have several outbreaks !! what do you say would help?

[DeMar]

I've only just seen this so hopefully am not too late to ask. Ring of Fire has alrady asked a lot of my questions. But here's a few more.

Is is possible to get a Western Blot Test remotely? FOr example, I live in Australia where the Western Blot test is no longer available. Is it possible for me to arrange for blood to be taken and shipped to The University of Washington (or similar)?

 

Shedding:

Is there any way to predict when shedding (will) occur(s)? I am asymptomatic but want to prevent transmission to my partner.

Is there a way to measure where an infection sheds from (when asymptomatic)

 

Is there a way to measure how old an HSV infection is?

 

IS there a way to correlate the amount of time since an outbreak and the liklihood of transmission between partners?

 

Thanks so much for doing this Grace!! Hope I'm not too late.

[Saturnian]

On 12/29/2021 at 5:37 PM, Sonia said:

Hi,

I have herpes like 12 times a year, this months it hasn’t stop at all and went on the second round. I cross checked many things, I do not have any AIDS variant, diabetes, not aware of having some latent venerological diseases. But during this check I realized I have celiac disease and also chronically low level of lymphocytes (around 1,1-1,3 all the time).

I was suggested to consult with immunologist/alergologías regarding the reason why I have so many outbreaks (it’s been already 10+ years I have genital herpes).

Would be happy to hear ANY suggestions on how to decrease the number of outbreaks (I eat very healthy, do sports, generally positive, from good, good quality life, no alcohol, drugs, sugar is very limited, taking acyclovir 2000 mg daily, as I have 53 weight). 
 

Kind regards,

Sonia

I’ve had an awful year with Herpes and wonder if it’s my Covid vaccine my doctor thinks my immune system is compromised . I also suffer from Candida and wonder if there is a link ? Let me know how you get on I’m taking acyclovir it’s not touching it and I can barely sit down. I’ve distance myself from my partner as I feel so sore .

[Flowerteacher55]

Hello @Saturnian,

I am so sorry you've been experiencing a rough year. You don't deserve that at all!

If your doctor thinks you have an autoimmune issue, perhaps he could run tests?

Candida definitely can overwhelm the body and cause an inflammatory response, so it is possible that is causing outbreak. 

Although it is challenging, it's okay to distance a little bit from your partner. You can explain to them what's going on and lean on them for support. Love holds us together and helps us get through the toughest of times! 

I am sending you prayers of health and happiness! 

grace

[Flowerteacher55]

@RingofFire @DeMar @Saturnian

Hello, Friends! 

I am going to ask all of your questions one day this week, I apologize for the lateness in asking the U of W. 

I actually just got my COVID booster and I am trying to finish a final project for my college, and it doesn't help that Washington state is three hours behind where I am! Lol.

I am also going to email them the list of questions so they can prep answers before I call them! 🙂 

Thanks for your patience!

 

[Sonia]

23 hours ago, panosM. said:

Good Evening !!! Did you finally visit an immunologist / allergologist? I am also thinking of visiting such a doctor because I also have several outbreaks !! what do you say would help?

Good day,

Yes, but would not say it was “successful”:) They are quite careful with suggesting anything in here, so immunologist wrote “Unclassified immunodeficiency” (I have low level of WBC, neutropenia mild level, low level of ferritin (as always): I got for now 2 packs of Sorbifer and a bunch of tests to do in 6 weeks (after I will take Sorbifer). I am still taking 200mg*5t/day Acyclovir. My low levels of ferritin are quite understandable because of celiac disease, but not clear why I have low segmented neutrophils for years (tracked this tendency for a while).

Kind regards,

Sonia

 

 

 

[Sonia]

7 hours ago, Saturnian said:

I’ve had an awful year with Herpes and wonder if it’s my Covid vaccine my doctor thinks my immune system is compromised . I also suffer from Candida and wonder if there is a link ? Let me know how you get on I’m taking acyclovir it’s not touching it and I can barely sit down. I’ve distance myself from my partner as I feel so sore .

Hi Saturnian,

Be strong dear. I know it is hard and painful (both physically and emotionally) to go thought this, but we have only one life and should fight/investigate/try to make all we can to get better, even if it feels that it will go forever. 
 

With COVID vaccine, my gynecologist said he saw many women this year coming with different complications, like blood spotting during normal cycle (which I had too, I had already three shots). 

With Candida, surely it is possible that COVID shakes your normal microbiome and that creates the comfortable environment for Candida (and vice versa). I had it this year two times and received Pimafucin and probiotics and managed to overcome that painful feeling (of course together with Acyclovir). I also excluded for that time all sweets. 

Kind regards,

Sonia

[Flowerteacher55]

@Sonia Hi!! 

Thank you for your positive kind words! I love how you said we have one life, and it is worth it (and we are worth it!) to fight and be strong 💕. So so true! 

I hope that your tests in six weeks go well and provide some answers. I am praying for you! Stay strong and keep us updated!! 

Blessings! 🌻🌟💛

[DeMar]

@Flowerteacher55

Hi Grace,

Just wondering if you've heard back?

Thanks,

 

[Flowerteacher55]

Hello, Friends! 

@RingofFire Sorry for the delay and thanks for your patience! I am about to send the questions list via email to the head of HSV Resistance, Dr. David M. Koelle, and the head of Virology, Dr. Keith R. Jerome. I will follow up with a call and report back! 🌻

Blessings to All!! 🕊️🌟

[RingofFire]

Hello @Flowerteacher55 Any updates from University of Washington?

[Flowerteacher55]

Hello @RingofFire and Friends!

I hope you are all doing well ☀️

sadly, UW hasn't gotten back to me 😔. I am going to call them later and ask if they 1) received my email and 2) they could please provide answers by email or phone. 

Thank you all for your patience! 

Blessings to all! 🍀☀️☮️

[Bloomer]

@Flowerteacher55 thank you from the bottom of my heart for putting so much effort and trying to help all of us.

If you ever receive any answers to your questions sent, please give us a feedback. I am trying to be positive but unfortunately I don't think that even the specialist and people researching this virus have clear answers to some of your questions. 

I am particularly interested in questions why some people are testing negative despite positive PCR swabs and why some people develop nerve pain (neuralgia) with this infection. 

Thank you again for your work and effort!

All the best!

[Flowerteacher55]

@Bloomer Hello! 

I sadly still have not received any answers from UW! 😞 I am both sad and frustrated. However, I am going to reach out again. 

I know what you mean in terms of answers to questions... every day, progress and data is made and collected, and this is wonderful. There IS hope! The frustrating (but good) thing about the medical community is that they do not typically publish information until they are SUPER sure of something. So, while it seems nothing is being done, there is definitely SOMETHING being done. I have a friend who is a doctor of osteopathic medicine... I may interview him and see what his thoughts are on HSV and nerve issues. 

I will keep you all posted! 🙂 

Stay strong, stay kind, and stay hopeful. This site is proof that hope and change are possible! 🙂 

Blessings to all! 🙂 

[DeMar]

Hi Flower,
Any news?
Thanks.

[RingofFire]

@Flowerteacher55Still nothing on this front from UW?

[Cat45]

Hi everyone,

I’m new to this forum. Unfortunately not new to herpes. I’ve had it for 26 years 😢! Apart from my initial outbreak and devastation at the enormity of what had happened to me I’ve spent the last 25 years not too bothered about it. This was due to the fact that my husband also has herpes and we have both been blissfully unaware that it can be passed on without having an outbreak. Since I’ve learnt this in the past few months I’ve been completely devastated all over again. It makes no sense as we have each other and don’t feel that will change. Nor have I, or he, ever strayed, but it’s just made me feel so isolated all over again. 

I’m also getting so many outbreaks recently and antivirals aren’t keeping it at bay.  I’ve been so dejected by it I wrote an email to Dr Keith Jerome and he got back to me straight away. My questions weren’t as in depth as some of yours, and I would love the answers to those so if anyone hears please let me know. I asked Dr Jerome if he thinks there will be a cure in our life time and he said yes. I’m hoping our life time means 5-10 years and not 20-30 😢! Apparently the research that they’re doing now is working in mice but he needs to do more safety trials before starting on people. I’d give anything to get rid and be free of this virus!! 
 

The other thing he said is to use our voices and advocate for cure/vaccination of herpes. I’m not sure how to do this and stay anonymous - stigma is an awful thing! Has anyone got any ideas? I live in Australia!