Epstein Bar Virus Curiosity

[marta]

Hey gang. I'm just reading an interesting book right now and am curious as to the history on this group - you know how we're always trying to make the connection. Depending on the results that come back, I might be eating my fighting words that I directed at another member on this site. Something I'd be happy to do if it means getting closer to an answer to this disease.

The question is have you ever in your life had a viral infection of Epstein Bar Virus (in the form of Infectious mononucleosis, Burkitt's lymphoma or nasopharyngeal carcinoma) or know that you have antibodies to the EBV virus?

Yes or No

(I'm gonna try and put in a poll, but I haven't done it before so if it's not here, just answer the question in the responses. I've turned into such a luddite, ha ha ha)

[Vansyckle73]

Yes!


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[Pete]

Nope, or should I say not yet...

[ST316]

Yes around 2008 when my daughter got Mono My blood work came back with Epstein Barr

[Arleta]

Hey gang. I'm just reading an interesting book right now and am curious as to the history on this group - you know how we're always trying to make the connection. Depending on the results that come back, I might be eating my fighting words that I directed at another member on this site. Something I'd be happy to do if it means getting closer to an answer to this disease.

The question is have you ever in your life had a viral infection of Epstein Bar Virus (in the form of Infectious mononucleosis, Burkitt's lymphoma or nasopharyngeal carcinoma) or know that you have antibodies to the EBV virus?

Yes or No

(I'm gonna try and put in a poll, but I haven't done it before so if it's not here, just answer the question in the responses. I've turned into such a lucite, ha ha ha)No

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[Alysia]

Not that I know about.
But my Q Fever Igg is positive for years and some of its symptoms are similar to wg.

[marta]

Thanks gang. What I've learned since posting this, is that only about 30-50% of people show manifestations of illness when they get the virus. Apparently it's the most common virus carried by humans. So whether you've had it or not, doesn't necessarily mean you don't have it in you. But the book I'm reading links so many many things to it. It's a virus from the herpes complex and like the cold sore virus, or the shingles virus, or the herpes virus, once inside, it lives with you for life. This book has a chapter on how to get rid of it using nothing but the right foods. I haven't gotten to that chapter yet, but I'm on the gut health chapter, and loving it.

Here's a cool probiotic tip I got. Most of us are vitamin B12 deficient. Regular probiotics can't quite make it to the spot that is the only uptake of B-12 in the body (I can't remember exactly but it's way down in the small intestine, just before the exit, so to speak) and the best way to get probiotics there is to eat sprouted food. The micro biome on sprouted seeds apparently is like 900 times better than probiotics we now take (kefir, pills, fermented foods) and it can hide during the digestive process within the sprouts and can get itself to that magical spot that is the B-12 receptor. So guess what. I've been feeding my whole family sprouts the last several days. Ha ha. Sunflower sprouts, broccoli sprouts, kale sprouts.... they're gonna hate me when I finish this book.

All the best and many thanks for playing along, as you always do. You're the best group of people out there.

Peace and love.

[seied]

Yes, mononucleosis.

Ed.

[seied]

What book is that?

Ed.

[little jerry]

I've had cold-sores in the past and lots of my friends had mono. So I guess that makes me a yes.

[Keith]

Likely since my wife had mono a few years back. I did have shingles in my 20's ... was not pleasant.

[marta]

What book is that?

Ed.

It's kinda out there Ed. So I don't know how far down the rabbit hole you wanna go. :blink:
I think right now you focus on your treatment and getting back to normal.
I will send you a PM because I just read your note and wanna tell you a couple of things that I thought of while reading it.

Here's the book though. Just in case you wanna do some preliminary digging.
https://www.amazon.ca/Medical-Medium-Secrets-Chronic-Mystery/dp/1401948294/ref=sr_1_1?ie=UTF8&qid=1512710421&sr=8-1&keywords=medical+medium

It's out there people. And I haven't read it to the end, so I can't say whether I endorse it, or if I think it's nothing. I'm still uninformed. ;)

[marta]

I've had cold-sores in the past and lots of my friends had mono. So I guess that makes me a yes.

I'm the same. I've never had Mono, but many around me have, and I was a cold sore magnet (as is my kid) - I think I might be working on one right this moment, ha ha.
I'm curious though. I am sure there is a way to find out if one has the antibodies. I'm gonna ask for a test next time I go to the doctor. I'm curious now. Might as well have fun exploring the possibilities if we're gonna be in this world of WG. :)

[BenHornsby]

I am also not sure and am intrigued to find out more and if i have??

[seied]

I am also not sure and am intrigued to find out more and if i have??

I know I had mono in the past because there is a blood test for it.
I suspect that is when my tinnitus started.

Ed.

[Alysia]

I've had cold-sores in the past and lots of my friends had mono. So I guess that makes me a yes.

I always get cold sores right after rtx.

[drz]

I always get cold sores right after rtx.

Is herpes a yes too?

[NatriceRomeo]

I had mono as a child...


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[mishb]

Is this also known as Glandular Fever. If so, then I am a YES

[marta]

I know I had mono in the past because there is a blood test for it.
I suspect that is when my tinnitus started.

Ed.

Interesting Ed, in the book there is a whole chapter dedicated to Epstein Bar Virus causing tinnitus.

So now I'm cross researching and it's fascinating. I've had ideas before that we can stop the issues during the innate immune response instead of the adaptive immune system (where the T cells and B cells live - and the ones we tend to kill with our treatment.) So now I'm finding out that different herpes viruses like to 'nest' in different places. Guess where EBV virus likes to make it's lifelong home using us as a host.... in the B cells and some epithelial cells (where my previous research led me in my innate immune system hypothesis.)

I'm looking at antiviral treatments that might be able to kill the EBV. That might be an interesting addition to treatment. Apparently also citric acid can also break through the walls of the virus, but then it hides, and pretends it's our B-cells, until something triggers it (just like a cold sore) so that's not viable. The idea is that once latent EBV becomes engaged, it triggers the immune system, and what appears as our immune system attacking the host/us, is actually our immune system trying to kill an Epstein Bar Virus infection.

Another interesting factoid I discovered today "CD4+ T cells are classically thought to orchestrate adaptive immune responses. But recent studies demonstrate that they can also kill infected cells directly. A new paper shows that highly efficient processing of Epstein Barr virus (EBV) glycoproteins for presentation on MHC class II makes virus-transformed B cells susceptible to lysis by CD4+ T cells."

So I was curious what cyclophosphamide goes after, I know it's both B-cells and T-cells, but I was curious if it's the CD4 T cells. They are activate the innate immune system and seem to be able to actually destroy EBvirus. So far it seems like it's more CD8 T cells, but the CD4 also get nuked. The web is forming in my wee pee brain.

Can you imagine if the answer is that simple and that elegant??? I've always had a hard time imagining something as perfect as our immune system turning the way that we believe it turns on us during an autoimmune disease flare. It just didn't ring true for me. Despite all these years that I've been immersing myself in this paradigm.

I think I might be in the midst of a massive paradigm shift.
I am going to continue to do research and make connections, if for nothing else, for my sci-fi book.

One of the things I learned today is that pretty much 100% of human population has at least one of the six varieties (with many more varieties within each group) of human herpesvirus family, I'm concentrating on EBV though. I think it might be a direction in which answers lie.

Kinda crazy and very cool if you ask me.

[seied]

Interesting. So, does Citric Acid help or hurt? Tinnitus started around mid-2014.
I believe that mono caused my tinnitus.
In my case, I started taking 1g Vitamin C (Emergen-C), daily for 2 months before GPA breakout ("first" flare up in July-2017). Also, I started taking 5mg of amitriptyline to sleep better.

Do you think EBV causes/triggers GPA?

Ed.

[mishb]

Wow, you are talking my entire health history here.

Glandular Fever, Meniere's Disease, T cells and not B cells affected according to Immunologist and Rheumatologist advised that RTX not possible for me as T cells affected.
Wegeners diagnosed via positive sinus biopsy

Citrix acid of any sort, in any food type including breads, sauces, soft drinks etc, kill me....well not literally, but painfully.
My joints become inflamed and my eyes turn bright red and itchy and light sensitive.
Can last anywhere from 30 minutes, to two days depending on how much I have consumed.
I have tested it with many foods, and 8 years later, I only have issues if I'm am out for dinner and the food is prepared differently, or the local fish shop ignores my request to not use lemon on my fish.

I still think that 2 months of full on stress was the trigger for bringing out WG in me though, which had probably been silent (sometimes peeking out to say hello, in forms of nose bleeds and ear and throat infections, since I was 2 years old)

[marta]

Wow, you are talking my entire health history here.

Glandular Fever, Meniere's Disease, T cells and not B cells affected according to Immunologist and Rheumatologist advised that RTX not possible for me as T cells affected.
Wegeners diagnosed via positive sinus biopsy

Citrix acid of any sort, in any food type including breads, sauces, soft drinks etc, kill me....well not literally, but painfully.
My joints become inflamed and my eyes turn bright red and itchy and light sensitive.
Can last anywhere from 30 minutes, to two days depending on how much I have consumed.
I have tested it with many foods, and 8 years later, I only have issues if I'm am out for dinner and the food is prepared differently, or the local fish shop ignores my request to not use lemon on my fish.

I still think that 2 months of full on stress was the trigger for bringing out WG in me though, which had probably been silent (sometimes peeking out to say hello, in forms of nose bleeds and ear and throat infections, since I was 2 years old)

So stress can totally be a trigger. I'm now reading the whole life cycle of the human herpes viruses, and many if not all of them can get triggered from latency by stress, among a myriad of other things. For cold sores, as many of us know, stress can be a trigger, but also UV light, an actual irritation on the lip where the nerve that is a permanent home to the virus ends. And poof a cold sore. So the EBV makes its home in the B cells, and epithelial cells (both elements that kept cropping up when I was looking at the innate immune response as an area of interest about a year ago...WG and epithelial cells kept popping up together in relation to the vasculature in all the stuff I was reading.)

I'm in the midst of a 'mind blown' moment in this journey, and I'll share with you my crazy speculations as the puzzle pieces fit. I am gonna go to my GP with a crazy idea next week, and I'll let you know how it turns out. ;)

On a different note:
I just wanted to give you an idea to help with the issues you have with acidy stuff causing tummy pain. Try this, if you're up to it and don't have any allergies... beta carotene. Take larger than normal hits of it daily (like 2 or 3 in the morning and same at night) until the moment you start to notice your skin getting a shade of orange. Then stop. The beta carotene helps rebuild mucous membranes throughout the body (yup, including the eyes, hence carrots being good for your eyes) but mostly in the gut lining. I suspect you might have beat up your gut lining with all the meds we're on, especially pred, and that's why the acidity hurts. Once you start high dosing with beta carotene, it goes directly to rebuilding the mucous membrane, and as soon as that job is complete, then it starts to store it for later, which is when you see it in your skin colour. When you see it, then you know the rebuild is complete, and you can try having an orange or something yummy that you miss, and seeing if it worked.

It doesn't interact with any of our meds, not that I'm aware of anyways, but you should always check. I hope it works.

[marta]

Interesting. So, does Citric Acid help or hurt? Tinnitus started around mid-2014.
I believe that mono caused my tinnitus.
In my case, I started taking 1g Vitamin C (Emergen-C), daily for 2 months before GPA breakout ("first" flare up in July-2017). Also, I started taking 5mg of amitriptyline to sleep better.

Do you think EBV causes/triggers GPA?

Ed.

I don't know Ed. I've spent the last 8 years learning how WG and autoimmune diseases work, and now I read this random book, and it kind of makes sense, so I start to do research to see how things connect, if at all, then they're starting to connect, and it's throwing me off a little. It's a little unnerving to be thrown off balance between paradigms.

Wouldn't it be insane if the answer is that simple. That elegant. Occam's razor and all.

[mishb]

On a different note:
I just wanted to give you an idea to help with the issues you have with acidy stuff causing tummy pain. Try this, if you're up to it and don't have any allergies... beta carotene. Take larger than normal hits of it daily (like 2 or 3 in the morning and same at night) until the moment you start to notice your skin getting a shade of orange. Then stop. The beta carotene helps rebuild mucous membranes throughout the body (yup, including the eyes, hence carrots being good for your eyes) but mostly in the gut lining. I suspect you might have beat up your gut lining with all the meds we're on, especially pred, and that's why the acidity hurts. Once you start high dosing with beta carotene, it goes directly to rebuilding the mucous membrane, and as soon as that job is complete, then it starts to store it for later, which is when you see it in your skin colour. When you see it, then you know the rebuild is complete, and you can try having an orange or something yummy that you miss, and seeing if it worked.

It doesn't interact with any of our meds, not that I'm aware of anyways, but you should always check. I hope it works.


My stomach is actually fine, just a little pregnazone.
My joints are what kill from having anything citric or citric acid. My joints become swollen and red and hot to touch, just like gout symptoms.
I will try the beta carotene though - who knows, it may work

Thanks Marta, and good luck with brainstorming the doctor next week

[Helen]

Very interesting. It was a Naturopathic Dr., years ago who provided the blood-test and noted Epstein Barr. It can go "dormant". I did have shingles a few times over the years. I have not seen general medical Drs. run this type of bloodwork. Then my illness progressed and escalated horribly further after unnecessary ear surgery 4 yrs ago, I was advised to do for the unusual tinnitus that was fluctuating at the time. I had no other work-up or tests. The surgery immediately took it to a chronic debilitating level 24/7 and what's affecting me the most with my sinuses. It's all I hear, feel, see and sense as its vibratory and roaring affecting me physically and emotionally. I got hit with shingles again afterwards which none of the Drs. took seriously. I don't know if this affected my ear injury at the time. Since then my health has been progressively failing and trying to get help. I wish I could see a Naturopath again to "listen" on my health as a whole, but health insurance won't cover this.

I would like to know if Marta made any progress from the book she read? Beta Carotene...wouldn't that be the same as taking Vit. A? Sprouts are good, but can surely contaminate the air! -H.