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523927 tn?1257018704

Reactivated EBV results

My recurring symptoms started up back in February. Over the course of the last few months, I've had a multitude of symptoms: Palpitations, abdominal pain, back pain, numbness/tingling in legs/feet, burning in the feet, chest pain, joint pain, muscle pain, fatigue, low-grade headaches, indigestion, night sweats (but not very many of them and not for awhile now), chills, hot flashes, frequent urination, conjunctivitis, ringing ears, and painful testicles. So basically, I feel whatever I have courses through my body because my symptoms change from week to week. Some days I feel like I'm recovering and then the next day I'm dragging. Or sometimes it works in half-day intervals.

Pretty much all of my testing has come back negative: gobs and gobs of blood work, CT of chest and abdomen, head MRI, EMG of major leg nerves, echocardiogram, heart cath, chest x-ray, lumbar spine x-ray, holter monitor, urine tests, ultrasound on thyroid, and upper GI.

Findings, not much: low potassium (briefly), low vitamin D, moderate acid reflux, mild gastritis in stomach, small kidney cysts. Some numbers on my bloodwork at times were a little out of range, but most of my CBC's have been within range.

The one item that has stood out is my EBV test results. The antibody testing shows that I contracted EBV a long time ago, but all of the current antibodies has high titers.
76 Responses
523927 tn?1257018704
The only trigger I can recall is what I perceived as a heart problem one day. My heart skipped a beat, I thought to myself "Boy, that's odd", and then went weak and flushed in the face and thought I was going to drop to the floor. That's when it all started. Fortunately, my extensive cardio work-up came back all good. Unfortunately, I'm on 5 months of migrating mystery symptoms.

Chronic EBV seems to get thrown into the same boat as chronic Lyme. At least there's an EBV test that gives some values of what the virus is doing in your system. Now, if I can find a doc that believes enough in it. I do have an appointment now with a doctor listed on Co-Cure at the end of August.
219662 tn?1223858560
The good news is that it sounds like you've had a thorough check-up and there's nothing life-threatening going on.  As far as EBV goes - I don't really know of the treatments that PlateletGal is mentioning.  From what I know, the only thing that works is maintenance: plenty of rest, lots of fluids, healthy food, avoiding stress, vitamins etc.  Things should improve with time.
Avatar universal

Hi Joey,

There are various treatments for EBV and/or CFS. I list many of them on my website (you can find my website address in my profile). I started the MSN group website because I knew that there were other frustrated patients like me who were getting the run-around.

The treatment I was on was using low-dose antibiotics to kill the pathogens (mycoplasmas, etc) that supposedly are the cause of my immune dysfunction and are responsible for my symptoms. I recently switched to a natural treatment that is doing the same thing. I'm having herxing (similiar to detoxing) symptoms, so that tells me that the treatment I'm on is working. I'm very happy with the progress that I've made so far, but I still have a ways to go.
219662 tn?1223858560
Thanks, PlateletGal, I visited your website.  What I meant to say is that, to my knowledge, there is no well-proven treatment for EBV/mono, all of the treatments are experimental and there is no one approach that works for everyone.  Obviously, things are even less clear with CFIDS/Fibromyalgia, since both are unfortunately still poorly defined medical conditions with no real diagnostic tests and no known causes.  I am one of the people that believes that EBV and related viruses can cause serious chronic illness, but the fact remains that most people with EBV don't develop any symptoms, so it can't be that simple...  It seems to me that the holistic approach (like the one you are trying) and healthier lifestyle improves the immune function and enables people to keep the virus in check.  Hopefully, the researchers will be able to sort this out eventually.  All the best to you!
Avatar universal
Hi Joey,

I agree. I honestly wish we had more answers. It's a shame that funding for CFS was recently cut. What is also a shame is the CDC's scandal. I'm not sure if you heard about that, but I believe that is why the CDC tried to redeem themselves later with the "CFS Public Awareness Campaign". I think back to the time when I had mono... I was only 18 years old. I try to remember if I was stressed out then, but the only thing I could remember was that I had a full life. I was working and also attending school.

I was excited when I heard that geneticists had identified a biological basis for seven different subtypes of chronic fatigue syndrome. However... I'm wondering whether or not the pathogens are able to alter our DNA ? Do you remember in Erin Brockovich how the toxicologist had said that chromium 6 can alter DNA ? Why couldn't pathogens ?  I'm happy that many parent's are storing their babie's cord blood and maybe that will give researchers more answers in the future.

I hate to say this, but I believe the pharmaceutical companies are focusing too much on making drugs to treat CFS symptoms, but not treat the disease.  $$$$$$$$$$$$$
523927 tn?1257018704
Trying to track down some docs who understand EBV and got a hold of one infectious disease office that the nurse told me, "Our doctors don't believe in reactivation of EBV". I shouldn't be surprised, I guess. Why even test for it then in older adults? I'll keep searching as Denver (nearby) has some widely recognized medical centers.
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