I’ve been reading a lot lately about Sjögren’s causes, symptoms, treatments and so on. The internet has been a great tool for pulling information from multiple sources which makes doing research super simple. What I find most interesting is that your doctor may not know or share much of this information with you!
Before long I started to find patterns in various research studies focusing on why so many auto-immune diseases are difficult to diagnose. From my experience, the type of auto-immune disease you are “diagnosed” with, hinges firmly on the symptoms you display. Furthermore, these studies focusing on diagnosis, repeatedly note no rock-solid information on known causes for these types of diseases. Doctors are essentially left only to treat the symptoms. Sadly, it’s hard to fix something if you don’t pay attention to what is broken.
While I’m not a doctor, I can only write about my personal interpretation of materials presented on diseases labeled as auto-immune disease. From Lupus to Sjögren’s, to MS and Crohn’s disease, there could be something more at play here. Something that could warrant extensive research and give us a cause or a cure for what ails us.
It has long been recognized that various auto-immune diseases fire up in our bodies around the time of another infection, allergy or even stress. For me, I believe things started with eating duck eggs, which I’ve found I am very sensitive to and will never dance with that deviled egg again! From there, it all went downhill quickly. My immune system kicked into high gear and I was left feeling run down with painful joints and mouth ulcerations.
Many sources hint at the fact auto-immune susceptibility can run in families with other known cases within that gene pool. I suspect the same could be said for allergies, migraines, poor eyesight and bad teeth.
What am I getting at here? Well, initially this might lead one to believe that genes play a big part in determining an auto-immune disease. BUT, unlike diseases such as Breast Cancer and the BRCA gene, genetic markers have not been found. I’m not arguing that genetically we may be more susceptible to various things but genetics is not a definitive answer.
So, now you have to question whether or not our symptoms are an action of the body going awry and attacking itself (true auto-immune disease). Or, are our symptoms simply a reaction to something more insidiously allusive?
Take for example, the Epstein-Barr virus (EBV), best known for causing the “Kissing Disease” Mononucleosis . Once contracted, this virus dwells within us for the remainder of our lives. Blood tests can reveal the body’s reaction to the virus in various stages.
A positive test for Viral Capsid Antigen (VCA) IgM would indicate recent activity, a positive VCA IgG shows recent past activity and positive EBNA (Epstein-Barr Nuclear Antigen) indicates infection post 6-8 weeks onward. For the most part, if your physician confirms that you’ve had mono in the past, they regularly brush it off. After all, they may have been taught EBV will remain latent after initial infection. But does it?
Various studies have already shown the correlation between EBV viral load and the activity or inactivity of Lupus (SLE). More studies are currently underway concerning the severity and root cause of other AI diseases such as MS.
The nitty gritty of it all is that EBV can remain dormant or latent in our bodies for long periods of time. It is very selective in how and where it will decide to activate and rear it’s ugly head. If it does so, its likely when our immune system is already compromised or otherwise preoccupied.
When EBV is detected, our bodies produce Epstein-Barr Nuclear Antigens or EBNA’s. These EBNA’s start their seek and destroy mission to protect the body from this foreign viral substance. These antigens will always be found in our blood but the key insight here is determined by the levels in which they are found and when.
Sadly, because I imagine EBV is so integrated within our bodies…it appears our body is attacking itself. Once we present with various symptoms or blood results, our illness is classified as an auto-immune disease. But, is this true? Really? And why doesn’t it happen to the entire 95% of the population who harbor the Epstein-Barr Virus? That is exactly what researchers are trying to figure out, but as with any research, advances are slow.
So this begs the question, are we treating only the symptoms of a natural immune response to increased viral load? And, what about cyclical flares and remissions? Some of the research I have read is astonishing and quite enlightening.
Many of us already recognize that sun exposure and the changing seasons intensify our flares. Some studies have been looking into the correlation of Vitamin D in respect to viral load. In one particular study, an uptick in Vitamin D reduced the total EBV load & EBNA over time. For those with active disease, EBV viral loads were much higher than those with inactive disease. Or, more simply put, a winter time Vitamin D deficiency may allow active EBV loads to skyrocket out of control. Once the deficiency is corrected, the immune system in the form of CD8+T white blood cells, kick in and BLAMO we are hit with a flare. Once the viral load is reduced and put back into latency, we feel better…but the damage is done.
Doctor Jill Carnahan has a great article on treating the reactivation of the Epstein-Barr Virus. She shares a bit more information on the finer points of how our body deals with this virus. For most who carry EBV, life goes on as one would expect. Others of us, we experience some trigger, setting our EBV into active mode. The key is keeping EBV latent like a big old bear hibernating in it’s cave…but we want that bear sleeping all year long!
Sleeping Giant – Tips To Treat The Reactivation Of The Epstein-Barr Virus
Diet can be the best medicine. Eating/drinking and supplementing what you consume with foods that have strong anti-viral qualities can and may change your life. Supplementation of Vitamin D during the winter might be an inexpensive and effective option to keep viral loads down.
While EBV may not be the cause of Sjögren’s or Lupus, it has yet to be proven otherwise. There are so many more functions in our bodies that can play a huge part in how our immune systems function. Studies are just beginning but I remain hopeful that researchers will connect all the dots, sooner rather than later. To me, if there is even the slightest chance that taking Vitamin D will make next spring’s flare more bearable- I’m all for it!
Disclaimer & More Publications
*This blog is not meant to diagnose or treat auto-immune disease. All information can be found simply by Googling reports published by various government websites. I am only writing my own interpretation of the findings I’ve read during my own Google search! As always, talk to your doctor, follow a protocol that you feel is right for you and never forget, you are your own best health advocate! Stay educated!
Here are a few more publications you can read about the effects of the Epstein-Barr Virus!
The Epstein-Barr Virus Solution
Hi Krislee, I was researching info (via Google!) on Sjogren’s, and I looked at facial rash pics. I saw yours, and clicked and realized my rash looks extremely similar to yours. Then I saw your link and read your posts and wanted to thank you for sharing. I have PsA, fibromyalgia and hypothyroidism. I was dx with PsA after a few years of rheumy visits, so I totally related to reading every thing I can find online about what’s going on with my body. My hubby thinks I’m OCD at times, but he is very supportive.
Again thanks so much! Almost forgot…I will be giving my rheumy and ENT a call to see what’s up now. Don’t want to go during the pandemic but I may not have a choice. This rash, dry mouth, and now facial pain and swollen salivary glands. My entire head actually hurts. Thought it was a sinus headache at first, but now it’s clearly not. Again, tks so much! It helps to know that I am not alone! Btw, will check out your animals and farm next. I’m an animal nut!
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