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523927 tn?1257022304

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?1257022304
So I have seen numerous doctors, as you can well imagine. It's at the point where my primary, the infectious disease doctor, and the neurologist are pretty much in agreement that I will need to ride out my EBV reactivation.

I'm okay with that if that's what it takes. I would like to think that with all of the testing I have done, that anything major would have been caught. I am thinking about getting one more opinion though.

I did also get checked for Lyme disease, but it was one of those inconclusive tests (PCR, I thnk) and the results were negative.

So far, what has seemed to help the most is a homeopathic doctor who prescribes me some herbal tinctures to help support my immune system and organs.

So some questions I have:
- For EBV-related issues, is an infectious disease doctor the best choice?
- For those who are also plagued by EBV, I assume that fatigue is not too uncommon? I had some large tree branches that I had to saw down to smaller lengths last night and it just seemed to wipe me out afterwards.
- Based on everything I have searched for, chest pain appears to be a symptom. I tend to get it in the center of the chest and more of a pinpoint pain. It's obviously not radiating and I have followed up with my primary about it who concludes its in the chest wall.
- EBV also appears to cause some organ pain? Mine will migrate around. For the last week or two, and it comes and goes, I would say my current back pain (possibly organ pain) would be the spleen area.
- How about uncomfortable sleeping? These last few nights have felt like someone beat me with a baseball bat. I tend to feel better as the day progresses, but getting up in the morning has been a little bit of a bear lately. I also seem to shift around a lot at night because my hips, and sometimes ribs, will ache.

I think I'm also leaning to some CFS I have perhaps developed, but none of my doctors have suggested such yet other than ruling out fibro.


523927 tn?1257022304
Oh, and I should add that the neuropathies that I have are considered small nerve. My neurologist just wants to see how I'm doing in a few months unless the numbness and tingling worsens. It comes and goes and seems to be a little worse towards the evening.

- So does EBV or CFS create neuropathies?
Avatar universal

Welcome aboard !! I'm so glad that you found this community, as most of us here can relate to what you are going through.

I'm going to try to answer your questions one by one.


- For EBV-related issues, is an infectious disease doctor the best choice?

Not necessarily. I've found that there is no specialist for CFS and many specialists don't want to deal with CFS patients because we take too much of their time. My Endocrinologist, who is awesome, told me that. He can only handle so many CFS patients because we are so complicated and have multiple issues. And then we still have to deal with those physicians <>, that have refused to read the literature on CFS because they already judged this illness because of its name (my opinion).

I highly recommend googling "Co-Cure's Good Doctor List" and searching for a physician who knows about CFS in your area. I also have that link on my website.... just read my entire profile and the website address is listed.

- For those who are also plagued by EBV, I assume that fatigue is not too uncommon? I had some large tree branches that I had to saw down to smaller lengths last night and it just seemed to wipe me out afterwards.

CFS patients have unrefreshing sleep... some CFS patients have trouble sleeping at all and others will want to sleep for many hours. Fatigue is our # 1 symptom.

- Based on everything I have searched for, chest pain appears to be a symptom. I tend to get it in the center of the chest and more of a pinpoint pain. It's obviously not radiating and I have followed up with my primary about it who concludes its in the chest wall.

Yes... chest pain and shortness of breath are seen in many CFS patients.

- EBV also appears to cause some organ pain? Mine will migrate around. For the last week or two, and it comes and goes, I would say my current back pain (possibly organ pain) would be the spleen area.

I've never had the organ pain. I have had back pain before. If you are having pain in your spleen area, I would suggest telling your physician and asking him/her whether or not you should have a CT scan done. I know that the spleen is often enlarged in patients who have mono.

- How about uncomfortable sleeping? These last few nights have felt like someone beat me with a baseball bat. I tend to feel better as the day progresses, but getting up in the morning has been a little bit of a bear lately. I also seem to shift around a lot at night because my hips, and sometimes ribs, will ache.

Yep... all too common in CFS. There is a physician (Ken Friedman, Ph.D) whose daughter was attending college. She had mono like symptoms and unfortunately, the health clinic on campus blew her off.  Her father was furious when he found out that she had EBV and then CFS. He said, "that the damage had been done".

Some CFS patients will fail the sleep study test. Dr. Friedman's daughter was waking up over 200 times every night. This was probably due to her pain...  but can you imagine ??

- So does EBV or CFS create neuropathies?

You bet they can. I often have tingling in my feet & in my hands. CFS patients also can have tingling due to an intolerance to gluten. We seem to do much better on a gluten free diet and without alcoholic beverages.




Avatar universal
Your story and mine could almost be the same with the exception of mine started in Dec07, have had alot of the same testing to include colonscopy,  EBV is one of those problems as plateLetgal said is hard to get help on,  still dealing with it but you are not ALONE.
Avatar universal

You are definitely among friends here and I hope that you will continue to post. There are treatments for chronic EBV and CFS. I've read from the experts that the sooner that you are treated, the better.

It bothers me that so many physicians are diagnosing people with EBV, chronic EBV and CFS but NOT treating them !
523927 tn?1257022304
Thanks for the kind responses. I've posted here a couple of times in the MS and Undiagnosed Symptoms section and it was suggested to check out Lyme disease. I've had a lot of Lyme-like symptoms, but I'm not quite to the point of paying for the iGeneX tests yet. I would at least like to have one physician start to delve a little deeper into my symptoms and agree that I have something going on. At least I've had 3 or 4 of the docs agree that my EBV reactivated.

Platelet Gal, I've lurked on these boards long enough to say you always have great insight and suggestions (perhaps, answers! -- but I won't hold you to it). I appreciate the doctor link and have found a doctor that is less than 20 minutes away who is covered under my insurance plan (yeah!). Thank you.

The organ pain is an assumption on my part. It very well could be my back or muscles. The pain can be a little sharp and focused sometimes, so that's why I kind of lean towards some organ pain. My homeopathic doctor has suggested as such when he tests may body's electrical impulses and usually he's dead-on with what he prescribes in clearing up the pain (herbal tinctures). I have had my innards CT-scanned with no significant findings and the pain will migrate and then just go away sometimes for days.

Obviously, when you have so many symptoms going on, you start to worry about cancers or bad diseases. However, I've read enough in the last few months to open my eyes to all of these chronic viruses and conditions that plague people.
Avatar universal
were u like me and had no medical issues prior to this EBV, I did not even know what it was prior to Jan of this year,  My primary has all but given up on me.  Going to see a ENT doc in 2-months have you been that route yet?
523927 tn?1257022304
Yep, I have seen an ENT. Nice fellow and one of those old-school doctors who seems to care about you. I went to high school with his daughter also. He was the first one to comment on my EBV results. My PCP had told me my results came back normal previously. Afterwards, the ENT doc takes a look at my recent tests and made a comment of, "Looks like you had mono recently". Ummm, actually not that I can recall. So he was the first to clue me into something popping up on my tests. He ended up doing what he could for me by checking out my thyroid with an ultrasound and extra blood tests. Everything normal. Being a specialist, he said that was about all he could do for me and everything looked okay to him.
Avatar universal

Thank you for the compliment. I am happy to hear that you are seeing a physician who knows about EBV & CFS. Since your symptoms started in February... they may be able to treat you now and hopefully you can make a fully recovery. If not... there are treatments out there and few of them are set out to cure CFS. I'm on one of those treatments. There are no magic pills... it takes time to heal.

And just so you are aware, there are tests that CFS patients (EBV symptoms for 6 or more months) are failing. One test that all CFS patients are failing is the Holter Monitor heart test. Patients with CFS show repetitively flat to inverted T waves alternating with normal T waves... this is not a normal result and apparently, something only seen in CFS patients.



219662 tn?1223862160
Perhaps you can figure out what's going on by tracing back to what has led to the onset of your illness.  This could be an adverse reaction to something.  Are you taking any medication?  Were you taking any medication (like antibiotics) in the months preceding your illness?  Also, EBV is primarily spread by saliva.  Did you have any new sex partners in the beginning of the year?  I wish you all the best, hope you feel better soon.
Avatar universal
My Ifectious Disease Doc called and advised today there is nothing more she can do for me, so the ENT is my last call.  They must really keep a busy office 4 of them and my appointment is still 2 mos away.  As you were told by your Doc Ott70,  Looks like riding it out and taking supplements and trying to find Docs that will help are the only avenues to take on this thing.
Avatar universal

I went through the same thing. I think I've mentioned before that Co-Cure.org has a "Good Doctor List" where many CFS & fibro patients have listed their physician because they were satisfied with him/her.

But you also have some possible treatments and other physicians on the internet who can help you a great deal ( in my opinion, but of course ! ). I've made significant progress and my Endocrinologist was the one who told me about the treatment protocol that I was on.

523927 tn?1257022304
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?1223862160
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?1223862160
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?1257022304
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.
Avatar universal

I've heard that medical schools still aren't teaching CFS and/or fibromyalgia to their medical students. They are still trying to sort out which specialists should be seeing these patients. It is frustrating, to say the least. But the good news is... the physicians who do treat our conditions, often post their treatment plans online and give us the support and answers that we desperately seeking.

Avatar universal
I am like you I dont know why they even test for it
219662 tn?1223862160
Oh, EBV can alter DNA for sure, although not nearly as much as chromium-6.  There are cancers that are definitely associated with EBV, like Burkitt's lymphoma.

Avatar universal

I've read that. What I also think is very interesting is how many of these autoimmune syndromes (Sjogrens --- Guillian Barre)  are all believed to be triggered by a viral or bacterial infection. I know the flu shot and/or the flu is suspected with Guillian Barre Syndrome. In addition to all of that... I've read that viruses could be the trigger for Hogkin's Lymphoma. I know my friend who had Hogkin's was ill with cold symptoms months before she was diagnosed. Interesting though, isn't it ?
1 Comments
Hi PlateletGal,  I am new to this forum and you seem to have quite a bit of knowledge on the EBV front.  I thought you and the others might be interested in my story. When I was in my early 30's I became ill with a sinus infection, that just wouldn't go away.  A trip to the Medac center revealed I had Mono.  I was told to go home and do nothing but rest.  I'm certainly glad I did not follow that advice as I would be dead today.  Within two days I was in the hospital diagnosed with Guillian Barre' Syndrome, unable to walk and rapidly declining in my ability to breath.  To make a long story - short, I was in Duke Hospital for 8 weeks before my condition started to level off and improve.  They then moved me to my local hospital in my hometown for rehab where I resided for another 6 weeks.  Recovering from that illness took me a couple of years, as my nervous system was really wrecked.  That was 30 years ago.  

Since then I have had periods of time, a year here and a year there, with debilitating fatigue and pain and finally was diagnosed about 5 years after the GBS with a reactivation of the  EB Virus.  I only got that diagnosis from my GP after I told my him I refused to take Anti-depressants until he ran all the test he could on me to find out what was wrong.  His comment was, "There is only one test we have not done, but you are not in the age group for that illness."  It turned out he was referencing Mono / EBV.  He came back with an apology and a diagnosis of Reactivation of EBV.  I'm certain I had the virus all along and just did not know it.   I also had developed Hypothyroidism during the years just prior to this diagnosis, which I'm sure was skewing what they were looking for.

I would encourage everyone who is suffering with this virus, to be persistent with your Doctor, and change DRs. immediately if they dismiss your condition!!  I was then referred to an infectious disease specialist, who plainly told me he could not help me.  I finally ended up in a bookstore and found a book by Dr. Jesse Stoff titled Chronic Fatigue Syndrome / AKA Epstein Barre Virus.  (I think you can still get this book on Amazon) He is a holistic Dr. that studied in England and had a protocol to treat it with supplements and food, and I devoured that book.  I did exactly what he said, with my eating habits, food choices natural supplements and all.  Within 4 months I was back on my feet again and stayed that way for many years.  I did have residual nerve damage from the Guillian Barre' and had to take great care in my routine of rest when needed along with the supplements and diet.  

However, I also let my guard down, after several years of feeling good, and was under great stress in 2010 - 2015.  Our family went through huge loses during that period of time and I let up on watching my diet, taking all of my supplements, and was working hard as well as trying to manage the care of my Mother-In-Law, who had developed dementia.  I started noticing severe joint pain and recurring illnesses, bronchitis etc.  Finally in 2016 I mentioned to my GP that this reminded me of a time in my past when I had a reactivation of the EB Virus, and could not get well.  They did an EBV panel and sure enough it was back in full force.  Unfortunately, my GP did not know how to treat it, so I immediately changed Drs.  I am now under a practice that has an Integrative and Wellness approach and believes they can bring my numbers back down again.  (Look for a Dr. of Integrative Medicine, they seem to have a more open mind to helping you.)  I am being tested regularly, and I'm fighting to get my health back once again.  

Yes, Guillian Barre' is definitely caused by EBV, and so are several Cancers.  At 66 yrs old now, I am working hard to keep them all from knocking on my door.  I've learned from my long history with this virus, you MUST keep your diet, rest and supplementation at the forefront of your mind.  Let your guard down and you will pay dearly.  It's easy to think when you are feeling well, "Oh I've beat this thing, I can relax"  But don't be fooled, always be alert, and don't feel guilty for pampering yourself either.  YOU need it to survive.  You can treat it, like you said, being good to yourself is part of that treatment.  Search for that Doctor that is an Ally who understands the disease, and I wish you all the best in your battle.

Thanks for letting me share,
K. Sanders
Avatar universal
When was the first time you had EBV and how long did you take to get over it the first time?  Who dx it your primary?  also I forgot if you said was dizzy/sinus/ears a problem for you?
523927 tn?1257022304
This is the first time that I have been aware of it. My titers from the EBV test suggest I contracted EBV a long time ago and now had a recurrence of it. My PCP actually told me my test was fine but then it was pointed out by the ENT I saw that I must have had mono recently (which I didn't -- haven't had a cold before this for at least two years).

Dizzy, not much. My holistic doctor has given me stuff to support the thyroid which is supposed to be the cause of dizzy spells. Sinuses have always been an issue to some degree, so I can't factor mine in as being an EBV symptom. Ringing in the ears, and sometimes some quick pressure, is a symptom that I have had.
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