Is chronic reactivated EBV different from chronic active EBV?

Posted by memecat28 @memecat28, Feb 7, 2018

I was just told I tested positive for all Epstein Barr Virus tests, except for the one that says you were recently infected. I was told I have Chronic Reactivated Epstein Barr Virus, and that I would be referred to an infectious disease doc. I started to research and everything keeps coming up with Chronic Active Epstein Barr, which seems to be a rare form and serious. Are these two forms different?

Liked by Marianne, bandolsmom

It's seems that we're all in the same boat on this 'group chat', trying to find a doctor who will take the time to learn exactly what CAEBV means and what we all can expect. I've had this for 36 years now and the symptoms get worse as I age. Here are my symptoms and a few solutions that I've found. I don't drink alcohol, only drink water, do not smoke and eat healthy. (My mono attacked my liver, not my throat, causing jaundice)

Fatigue so bad that entire body tingles and every nerve hurts: During bad episodes, get on the couch and stay there. If you fight it, you'll only get worse. Listen to your body.
Sleep: Require at least 10 hours of sleep per night
Insomnia: Isn't this fun, catch 22
Chronic Migraines: Keep a Migraine Tracking Chart, using the Wong-Baker Faces Pain Rating Scale. When the pain level gets to an 8 or higher, take pain killers, otherwise live with the pain. Tried Ajovy and that didn't help. Doctor wants me to try Emgality. I'll try……
Depression/Anxiety Attacks/Brain Fog: Doctors will want to fill you up with anti-depression drugs. I take a mild dose of Bupropion to keep away the brain fog. Anxiety Attacks, they happen and I deal with. Depression: Who wouldn't be depressed, but DO NOT let this get you down. We all could have stage 4 lung cancer. Yes, what we have majorly sucks, but jump up and enjoy every good day. Depression is not an option. Don't let this rob you of all the wonderful things that we still have.
Klutz and Stupidity: Have a tendency to drop things and have also found that I'm having more 'duh' moments.
Fevers, Chills, Nausea and Nosebleeds: Mild fevers a few times per month, chills – put on extra clothes, nausea – it happens and nosebleeds they happen too. Just deal with it.
Irritable Bowel Syndrome: Severe Constipation – take a Cascara Sagrada every night to keep my system regular. Have tried all the 'fiber' and meds and found this natural product is the only thing that works. Have been taking if for over 30 years and the only side effect is that it's turned my colon the color brown, but has had no other bad effects.
Allergies to Alcohol, Mosquitos and Fire Ants: One drink and I'll be up puking, solution – don't drink. Mosquitos and Fire Ants, I didn't know this, but this is a symptom. I found that Neosporin with Pain Relief will help.
Dizzy: Not really dizzy, but more like Sea Sickness. My world rocks. and not in a good way. There are 3D videos on the internet that will help. It's a matter of retraining your eyes to respond to your inner ear.
Canker type sores: Will get cancerous sores in and outside of my nose. At my worse times (before diagnosis) would get in my mouth and even on my legs. If not treated, these will explode and look really nasty and can last up to a month. Clean these with alcohol and use Abreva. The stuff is expensive, but well worth it.
Weight loss: I'm 5'3" and was down to 90 pounds. I now am careful about how many carbs I eat and dairy products. They thought I had Celiac, which I don't, but eating too much wheat will increase my symptoms and will lose weight. I work hard to keep on an extra 15 pounds above my comfort weight, so I am now 120lbs, for when I have really bad episodes. I can lose 7 pounds during a bad 2 week episode.
Hair Loss: This also happened when I was down to 90 pounds and my body wasn't processing food.
Pain: Back pain and right side pain, feels like a bruise. kidney stones.
Aching joints, especially the knees and hands.
Urinary tract infections: Even with all the water I drink, my urine samples are always 'contaminated' and have blood in them. Have seen an urologist, he put me on meds for 3 months, they did nothing and I just accept that my samples will be contaminated and have blood in them.
Feminine Problems: When I eat too much wheat, will experience 'touch them and die' painful boobs, cottage cheese discharge and yeast infections. It can get so hot down there that I can burn the skin off my husband's 'you know what'.
And back to Fatigue: Mentioned this above, but since NOBODY seems to get it, I'm repeating. I'm tired, cansado, stano, lassus, fatigued, work-out, sleepy, exhausted, weary, drowsy, drained, debilitated, spent. I'm so bloody tired that I can't move.
Work: I can no longer work and I miss it. Have streamlined our home and yard to keep maintenance to a minimum.

It seems that we are all so used to being brushed off that we have failed in truly communicating with our doctors. I've written a letter to my doctor and dropped off. So far, he's talked to my husband to find out 'what's happening with Laura' and he's willing to make an appointment with me to go over all of the above. I know that there is no cure for this and we can only treat the symptoms, it would just be nice to have the support of the medical profession.

Just don't be like me and wait 36 years to get mad enough to do something. When you go to your doctor, you have maybe 10 to 15 seconds where they listen to you. Put it all in writing and give to him/her. If they don't respond, find a new doctor.

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I'm 65 and had mono as a freshman in high school. I have never really felt great and would always worry if I could make it thru trips and activities. Never shared these feelings with anyone and constantly pushed myself. The last 20 years I have not felt well. My gallbladder and Rocky Mountain Spotted Fever came along and I do not remember feeling really good after these. I asked my doc now that my gall bladder was out when would I feel better and was told I am better because the gallbladder is gone. 20 years later after finding out I am highly intolerant to gluten my stomach problems are healing. I still have more periods of feeling bad than good and lately my joints hurt like crazy. I pray for healing. Last year I thought I was dying and changed to a integrative medical office and have come a long way.

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Sir I have very little bit knowledge .I am 1st year ayurvedic medical student.for improving my knowledge I joined in this group.i want to become a good doctor.please help me sir with your good medical tips and good medical knowledge.thanking you sir.my name is kalyan sir.

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This illness is death.I have had it for 9 months, I do not function. I am now sitting here with tonsillitis with lymph nodes sticking out of my neck. Good luck with infectious doctors they do nothing. This illness is chronic I have it and I keep getting sicker and sicker. I can no longer function. It causes many cancers and good luck getting anyone to run the proper tests that need to be done. There is mono Epstein barre, Epstein barre virus, infection, reactivated, you have to look at your IvgG and all of that

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I was tested recently (by my request and on my own) for EBV due to strange health symptoms. It showed positive for past virus. I am constantly being told it's not big deal you had Mono…I don't recall ever having Mono and I too know it can cause other bigger health issues so I just hope for the best as MD's shrug it all off.

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I can not believe there is no doctor on earth that can help us I feel like I’m dying I called a rare genetics he might take my case going to a functional dr will help but it is very expensive they give you ozone therapy and someone on here said buy the EBV book take every vitamin on there eat good you do all of this then mybe you will have a life right now Sloan Kettering is doing initiative T cell memory regeneration for chronic Epstein barre that is where it lies in your B and T cells and spreads rapidly. Doctors want to look at your blood comp panels that means nothing you need the EBV/dna test done if you want anyone of intelligence to speak to you at John Hopkins, Boston mass , Sloan kettering

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I had mono first at 20 years old. Got feeling better completely within 6 weeks. Two years later at age 22, about three months ago, woke up with an acute flu like illness and two days later was feeling about 50% better, just a sore throat and fatigue. Doc tested me again for mono. Monospot gave a weak positive and EBV blood panel showed all positive except for igM was negative which they said was a past infection. Fatigue persisted as well as joint pain and muscle aches. I was tested again by a new doctor. Monospot was positive but they never ran a full blood panel again as far as I know. Lyme disease negative. West Nile negative. Spleen normal. Metabolic panel and CBC normal. Fatigue persisted and body pains went away gradually and it seemed the fatigue disappeared. Then after drinking a several drinks and getting slightly buzzed for the first time in three months, about three days later a severe sore throat recurred. Only hurt in left side when swallowing and left tonsil was enlarged. It has gradually reduced and is very mild 10 days later (about 90% better) but the incessant fatigue has returned. Also I suffer from GAD/panic disorder and started taking low dose Zoloft before the sore throat started.

Anyone have similar experiences?? I’m supposed to start my first full time job out of college in a week.

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@sherryntn

I'm 65 and had mono as a freshman in high school. I have never really felt great and would always worry if I could make it thru trips and activities. Never shared these feelings with anyone and constantly pushed myself. The last 20 years I have not felt well. My gallbladder and Rocky Mountain Spotted Fever came along and I do not remember feeling really good after these. I asked my doc now that my gall bladder was out when would I feel better and was told I am better because the gallbladder is gone. 20 years later after finding out I am highly intolerant to gluten my stomach problems are healing. I still have more periods of feeling bad than good and lately my joints hurt like crazy. I pray for healing. Last year I thought I was dying and changed to a integrative medical office and have come a long way.

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Hi just read your post I’m in the same age group. Have had mono as a teenager and just diagnosed with EBV .
I had my gallbladder out two years ago also being told it was my problem felt better for a few months then went down hill again.
Anyway just saw an infectious disease doctor
In NYC that is supposed to treat EBV and he told me the same thing they can do nothing for EBV. He told me I should stop antivirals that my regular Md gave me and treat the symptoms as they come.
Paid out of pocket to hear not much of anything new. He did take a lot of blood tests so waiting to see.
I work out everyday for my joints gently not like I used to because of fatigue.
Research is being done but not quickly enough.
I will look into an integrative medical group. Your information helped me thank you.

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@aeg73

I was tested recently (by my request and on my own) for EBV due to strange health symptoms. It showed positive for past virus. I am constantly being told it's not big deal you had Mono…I don't recall ever having Mono and I too know it can cause other bigger health issues so I just hope for the best as MD's shrug it all off.

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You need more clarification on the test that was done. First of all, it's a multi test. There will be more than one result. If you show positive for past virus, that's okay, even if you've never had mono. My son is positive for past virus and has never had mono either. There are different ways that you can have the positive for past virus. If this is the only part of the testing that shows positive, then CAEBV is not a health problem for you. This does not mean that you have Reactive Mono or Chronic Active. The other parts of this blood test will show if you have chronic mono. You need to get a better answer from your doctor. Call the nurse and she/he can look up your test and most likely verify this for you.

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@mattkl817

I had mono first at 20 years old. Got feeling better completely within 6 weeks. Two years later at age 22, about three months ago, woke up with an acute flu like illness and two days later was feeling about 50% better, just a sore throat and fatigue. Doc tested me again for mono. Monospot gave a weak positive and EBV blood panel showed all positive except for igM was negative which they said was a past infection. Fatigue persisted as well as joint pain and muscle aches. I was tested again by a new doctor. Monospot was positive but they never ran a full blood panel again as far as I know. Lyme disease negative. West Nile negative. Spleen normal. Metabolic panel and CBC normal. Fatigue persisted and body pains went away gradually and it seemed the fatigue disappeared. Then after drinking a several drinks and getting slightly buzzed for the first time in three months, about three days later a severe sore throat recurred. Only hurt in left side when swallowing and left tonsil was enlarged. It has gradually reduced and is very mild 10 days later (about 90% better) but the incessant fatigue has returned. Also I suffer from GAD/panic disorder and started taking low dose Zoloft before the sore throat started.

Anyone have similar experiences?? I’m supposed to start my first full time job out of college in a week.

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Hi @mattkl817 ….I had a similar experience with my first known EBV infection when I was almost 21 and then a bad relapse 6 months later. I was working as an RN that included 12 hour shifts, often no breaks, and odd hours which I am certain contributed to the relapse. After 3 months off, I could only go back to work part-time and pretty much had to "couch it" on my days off. I know that is no fun for a twenty-something, right!!?? Anyway, I am now 47 and have a greater understanding of my journey with EBV relapses. I relapsed again in my 30s and most recently at age 43. I am now thankful to be on the upswing of my last relapse. I have spent the past few years reading and researching about EBV and chronic fatigue syndrome. Most people can have an EBV infection or even develop mono and go on to live healthy, happy lives. But there are some, like us, who struggle with those life-changing relapses. The theory is that the stress from the initial virus sets the body into a forever stress mode causing a cascade of challenging symptoms for the patients and the doctors. I obviously can't diagnose or advise any treatment for you or have the room in this platform to explain everything in detail, but I can share a few things I've learned….EBV was only part of my illness. It turns out that it was Chronic Fatigue Syndrome which involves many other body systems, not just the immune system. It is not well understood or even recognized by conventional physicians. Even places such as the Mayo Clinic do not have up to date information on their website. Mayo Clinic still indicates cognitive behavioral therapy and graded exercise therapy for CFS which have been disproven to be effective and may even be harmful. The CDC is a better source. Only recently has there been updated information published in medical journals. Be aware that any kind of stressor whether it is lack of sleep, surgery, work stress, relationship stress, another illness — can set you back. According to the research I've done, there is not one thing (such as a medication or lifestyle) that helped me overcome the debilitating fatigue. It involved hitting it from many angles — a clean diet, supplements, DNRS (retrainingthebrain.com), proper sleep, and stress management to begin to get well. Dr. Rodger Murphree in Alabama (www.yourfibrodoctor.com) has been a tremendous help along with Annie Hopper's DNRS Program (www.retrainingthebrain.com). You can google both of those people for more info if you'd like. Also, be aware that conventional doctors may not understand EBV and the fatigue you are dealing with. Don't be disheartened by that. Most have NOT been educated about recurring EBV and/or CFS. Many of those suffering however, have had results with a functional medicine or integrative physician. You are your best advocate! Don't give up! Take care of yourself!

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I’ve actually had active full-blown mono twice. 1st time was 1990, 2nd time around 2010. In 1995, I gotta mono\strep like infection that I couldn’t kick. I was diagnosed with EBV by my pediatrician and referred to a specialist. He diagnosed ME/CFS and it was my understanding that EBV is not an actual diagnosis. Most of population will test positive for EBV exposure, majority don’t get sick @all. If EBV is active then a person has mono.
Has your doctor mentioned ME/CFS? I would ask what the difference is between CREBV and ME/CFS? An infectious disease Dr can rule out Lyme disease, which presents similarly, too.

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I have chronic reactivated epstein barr and I am at a loss as to what to do. My former primary doctor-who is now deceased-was the one who diagnosed me, and he was the only one who ever took me seriously. Since then it has been struggle after struggle with doctors, even infectious disease doctors, as none seem to support that it exists and that it's all in my head. I have even had some try and label me crazy. I cannot afford a naturopath, so I am on my own here. I can sometimes get someone to prescribe Valtrex but don't know how long I can expect that. My last numbers were EBV IGG VCA >750, up from a previous 687.00; EBV NUCLEAR AG IGG 39.90 positive down from a previous 42 positive; EBV EARLY AG 20.20 positive, up from a previous 18 positive. I know that spells reactivation. Granted I have had enough stress to rock any boat, and have made mistakes in my diet, but I don't want to be my own worst enemy in this but I just don't know what to do. I have a supply of Valtrex; I have L Lysine; I tried monolaurin; I take other supplements, D3, Tumeric, C, A, Coq10, etc. I get freaked out because there seems to be so much conflicting information regarding antivirals and supplements and no doctor here is of any help. My CBC and all have been relatively normal. It is like I have been in a "holding pattern" of sorts; no worse but no better and I want to break that pattern for the better so folks I need all the help and advice I can get.

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There is research being done at the University of Minnesota. They have all sorts of information. https://sites.google.com/a/umn.edu/umnthemonoproject/home

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@andieca

I have Hashimoto's, which is an autoimmune disorder that attacks the thyroid. I recently started seeing a naturepathic doctor who ordered a battery of tests. It turns out I have reactive EBV. There's a connection between EBV and autoimmune disorders like rheumatoid arthritis, Hashimoto's, and about 100 others. I also have chronically low vitamin D which is known to play a part in both reactive EBV and autoimmune issues.

My Dr has me on antiviral medication, an assortment of supplements that will not only help the antiviral medication but also help calm and relax my body to ease stress (a big trigger), a specific workout plan, and my diet has been overhauled. He has cut out all gluten, grains, dairy and sugar. His belief is that since the immune system is in the gut and I have autoimmune issues than I most likely suffer from something called leaky gut which some doctors believe triggers EBV. So far so good but the antiviral medication is very expensive even with my insurance ($200 a month).

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I empathize with your situation. It's the same as mine, plus anemia & % iron saturation 8 which is a code blue alert Dr. Roach said. What antiviral medication were you on and for how long? Thanks for sharing your story.

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