What / how to test for reactive or chronic Ebstein Barr

Posted by diggydo27 @diggydo27, Apr 17, 2019

Hello – I’ve been reading through almost every thread here that relates to EBV and also reading the Medical Medium book. I’ve been dealing with most of what he mentions in the book and diagnosed with many “ailments” – depression, IBS, stress/anxiety, tinnitus, migraines, sinus surgeries, ADHD, UTI’s (that aren’t), unexplained fainting/dizziness to name a few… I had my first positive EBV in 2006 but was told it was a past infection (IGG around 495) but have been dealing with unexplained issues before and after that. Two months ago I started again with debilitating random symptoms that don’t point to any medical “diagnosis” and so far have seen a PCP, Ob-gyn, urologist, and GI…. been on two rounds of antibiodics, have had 2 CT scans and 1 ultrasound and about 8 vials of blood drawn. The only thing that came back was an elevated EBV IGG (around 400) – my dr believes it’s a recent reactivation and accounts for my fatigue but also dismisses it as the cause of the remaining symptoms. However reading the Medical Medium, there are so many symptoms he’s mentioned where I’ve said, OMG I’ve dealt with (or am dealing with) that!!!! I truly believe that EBV is the cause of what ails me and it’s extremely frustrating to not be able to find a health professional who will support it.

So my questions – through all of my reading, I can’t find a definitive approach to testing. I’ve been dealing with random mystery medical issues for 20 years and would like to pursue testing to understand what is the extent of my EBV infection – is it reactivating or is it chronic (how do I know I’m not one of the rare cases)? How pervasive in my system is it? It’s scary to read it can hide in your liver or spleen and not be detected until it’s too late – especially when I’m having pains in those regions but all tests (bloodwork and scans) come back normal. I’ve only had my IGM, IGG and EBNA levels done and the only one ever elevated is IGG. Should I have the DNA testing done? Are there other levels I should have tested and once I’m on my path to recovery, should I have my levels tested again? And how do I know what a normal IGG level is after an initial infection? I know it stays with you for life so is there even a normal? I live in the New York area so there has to be a specialist somewhere! I am definitely going to make the diet / supplement modifications suggested but would really like to understand the extent of damage already done. I am a woman (barely) juggling a career and family fading more and more each day – extremely fatigued, random arthritis like pains, stomach pains and facial flushing are my biggest issues right now (plus other on / off symptoms). Sorry for the long post but I’m in that desperate / confused phase and really don’t want to have another specialist tell me that maybe I should try anxiety meds 🙁 Thank you!!!

Hi @diggydo27, I can understand your frustration of getting a diagnosis and pursuing a treatment that helps. I found a few sites that may provide some helpful information.

Routine Epstein-Barr Virus Diagnostics from the Laboratory Perspective: Still Challenging after 35 Years
https://jcm.asm.org/content/42/8/3381

Evidence-Based Approach for Interpretation of Epstein-Barr Virus Serological Patterns
https://jcm.asm.org/content/47/10/3204

Serological diagnosis of Epstein-Barr virus infection: Problems and solutions
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3782265/

Have you thought about seeking a second opinion from Mayo Clinic? They are really good at diagnosing and treating hard to diagnose conditions. You can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

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Are you overweight? Many Doctors nowadays are afraid to tell patients to lose weight. The fatigue is not normal if you have a healthy diet and are of average weight. Keep an eye on your liver enzymes. Fatty liver disease is often not detected with bloodwork, but it is quickly becoming more prominent than diabetes. It is often referred to as “the silent epidemic.” I had Mono and feel like I never really recovered. There are many diagnoses that are linked to Epstein Barr. Keep that in my mind.

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@ahaf06830

Are you overweight? Many Doctors nowadays are afraid to tell patients to lose weight. The fatigue is not normal if you have a healthy diet and are of average weight. Keep an eye on your liver enzymes. Fatty liver disease is often not detected with bloodwork, but it is quickly becoming more prominent than diabetes. It is often referred to as “the silent epidemic.” I had Mono and feel like I never really recovered. There are many diagnoses that are linked to Epstein Barr. Keep that in my mind.

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Hello @ahaf06830, welcome to Connect. Thank you for sharing this information. While I don't have Epstein Barr, I'm fortunate to have had those uncomfortable discussions with my various primary care docs about the excess weight I've carried. I've lost about 80 pounds from my heaviest point 10 years ago, but it's still a daily battle with me. Here is just one of a lot of available information supporting the information you shared about excess weight and fatty liver disease.

The skinny on fatty liver disease
https://www.health.harvard.edu/diseases-and-conditions/the-skinny-on-fatty-liver-disease

@ahaf06830 you mentioned you feel like you never really recovered from Mono. Have you looked into any additional treatments or tests?

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