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Epstein- Barr Virus…The Hidden Disease

May 12, 2016 By: Angela78 Comments

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So Maybe I should have listened to my dad…

Let me tell you it is a mistake many high school kids make, but what they don’t tell you is that it can come back to bite you and become a chronic disease not just a week out of school!

I’m talking Epstein Barr Virus or as many people call it -Mono or even better “The Kissing Disease”…

I was seventeen years old when I was given the “Kiss of Death” as I like to call it…good old MONO!

I was dancing competitively, practicing three to four nights a week, a high school student in honors classes, and playing premiere soccer, I brought new meaning to ” Burning the candle at both ends”. I was a high energy person who loved to be busy, I truly didn’t know how to sit still, but I little did I know I was wearing my already bad immune system down to nothing. I remember the weekend all of my balls I was juggling in the air came to a crashing halt, I had just competed in a dance competition and remember laying on the floor on the side of the stage before I would go on, I was so tired….I just assumed it was due to my upcoming monthly friend and called it a day. Well, I went to perform and collapsed on stage from the pain and had to be whisked to the hospital and would spend hours with a high fever and horrible pain under my ribs with no source of infection.  After countless hours, it finally came back that I had EPV/Mono with Strep, I took antibiotics for the strep and spent almost three months out of school and any activity. I was never the same but it would take me 15 years to really put the connection together, and multiple doctors blamed my multiple lists of symptoms on anything that was an easy fix, ADHD, IBS, Anxiety just to name a few.

Fast forward fifteen years and my son became sick with a mysterious illness, many of his symptoms were similar to mine so I decided to start putting myself through tests and did a timeline of my symptoms to hopefully figure out a connection. Well, we learned in the process that we both had Chronic Lyme Disease, Yeast Overgrowth, Leaky Gut and EBV while his levels were just slightly present mine were astronomically high! I was in shock and while I felt horrible It wasn’t the same horrible I had felt when I had EBV the first time, and how could so many test and doctors miss all of this!

What is Ebstein Barr- Virus?

The Epstein-Barr virus is one of the most common viruses and is part of the herpes virus family. It has been estimated that EBV, which was discovered in 1964, infects almost everyone at some point during their lives. The Epstein-Barr virus often causes no symptoms, but it can cause mononucleosis and has been implicated in the development of other conditions, including multiple sclerosis and breast cancer.

What are some Epstein-Barr virus symptoms?

Infectious Mononucleosis

When teenagers are exposed, about half will get mononucleosis (mono) or ‘kissing disease.” A few weeks after contact with EBV, monocytes, a certain type of white blood cell, grow unchecked, filling up in lymph tissue. Teens can be laid up for weeks, sometimes months, before the fatigue lifts and they begin to feel normal again.

Symptoms of mononucleosis include

  • Fever
  • Extreme fatigue
  • Swollen glands
  • Sore throat
  • Painful swallowing
  • Enlarged lymph nodes in neck and under arms
  • Enlarged spleen
  • Enlarged liver
  • Anemia
  • Red spots on the roof of the mouth
  • Eye swelling
  • Rash

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So as you can see by the pictures above, I had these mysterious rashes almost like cystic Sores mainly near my mouth and face, they had started off as cold sores which I also had always gotten when I was stressed but would get one. They turned into more and spread all over my body and would last for 3-4 weeks with a clear like fluid. My symptoms new came at the same time, so I never really put the pieces together until after. I also had horrible painful spots on the roof of my mouth, again I would just assume it was a canker sore flare when I was stressed , EBV never crossed my mind!

How can I catch it?

There are many ways to catch EBV….

  • You can get it as a baby if your mother has the virus.
  • You can also get it through infected blood.
  • Hospitals don’t screen for the virus, so any blood transfusion puts you at risk.
  • Transmission can also happen through other bodily fluids, such as those exchanged during sex. Under some circumstances, even a kiss can be enough to transmit EBV.

Someone with the virus isn’t contagious all the time, though. It’s most likely to spread during its Stage Two. Which brings up something that I did not realize which was that EBV had four stages!

The Four Stages of EBV…

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Stage 1

If you catch EBV, it goes through an initial dormant period of floating around in your bloodstream doing little more than slowly replicating itself to build its numbers.If you physically exhaust yourself for weeks and give yourself no chance to fully recover, or undergo a traumatic emotional experience such as a breakup or the death of a loved one, the virus will detect your stress-related hormones and choose that time to take advantage.

EBV will also often act when you’re undergoing a major hormonal change—for example, during puberty, pregnancy, or menopause. A common scenario is when a woman goes through childbirth. Afterward, she may feel various symptoms, including fatigue, aches, and pains, and depression. In this case, EBV isn’t exploiting your weakness, but the fact that hormones are a powerful food source for it—their abundance acts as a trigger.

The virus is especially vulnerable during Stage One. However, it’s also undetectable through tests and causes no symptoms, so you normally wouldn’t know to fight it, because you wouldn’t be aware it was there.

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Stage 2

Medical communities are unaware that every case of mononucleosis is only Stage Two of EBV.

This is the period when the virus is most contagious. It’s, therefore, advisable to avoid getting exposed to blood, saliva, or other bodily fluids from someone who has mono…or to avoid exposing anyone to your fluids if you have mono.

During this Stage Two, your body’s immune system goes to war with the virus. It sends identifier cells to “tag” virus cells, i.e., place a hormone on them that mark them as invaders. It then sends soldier cells to seek out and kill the tagged virus cells. This is the power of your immune system coming to your defense.

You can have mono for just a week or two with a mild scratchy throat and tiredness, in which case you aren’t likely to realize what’s really happening, so you most likely won’t visit a doctor for a blood test.

Then again, you can get hit hard with fatigue, sore throat, fever, headaches, rashes, and more that hang on for several months. If this happens, the chances are you’ll go see a doctor who’ll test your blood, and the Epstein-Barr virus will show up as a form of mono…most of the time.

It’s during this stage that EBV seeks a long-term home by making a run for one or more of your major organs—typically your liver and/or spleen. EBV loves being in these organs because mercury, dioxins, and other toxins are likely to accumulate there. The virus thrives on these poisons. During EBV’s Stage Two it often brings a date,  meet your new friend with no benefits “Streptococcus”, it can travel up to create strep throat and/or infect the sinuses, nose, or mouth. It can also travel down to create infections in the urinary tract, vagina, kidneys, or bladder . . . eventually causing cystitis.

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 Stage 3

Once the virus settles into your liver, spleen, and/or other organs, it nests there.

From this point on, when a doctor tests for Epstein-Barr, she or he will find antibodies and take these to indicate a past infection, when EBV was in its monophase. The doctor will not find the EBV presently active in the bloodstream. The confusion here is one of the biggest blunders in medical history—this is how this virus has slipped through the cracks!The virus is, in fact, still alive and causing new symptoms…and it’s eluding the tests. That’s because it’s living in the liver, spleen, or other organs, and the test to detect this has not yet been invented.

With the virus hiding undetected in your organs, your body assumes it’s won the war and the invader has been destroyed. Your immune system returns to its normal state, your mononucleosis ends, and your doctor tells you that you’re healthy.

Unfortunately, the Epstein-Barr virus has barely begun its voyage through your body.

If you have a typical variety, EBV could lie dormant in your organs for years—possibly for decades—without your knowing it. If you have an especially aggressive variety, though, EBV may create serious problems even while it’s nesting.The virus may burrow deep into your liver and spleen, causing those organs to become inflamed and enlarged. And once again, keep in mind that your doctor does not know to connect the dots between past EBV and its present activity in the organs.

The virus also creates three types of poison:

  • EBV excretes toxic waste matter,this becomes increasingly significant as the virus grows more cells, and its expanding army keeps eating and excreting poisonous byproduct. This waste matter is often identified as spirochetes, which can trigger false positives on tests such as Lyme titers (screening tests for Lyme disease) and lead to a false diagnosis of Lyme.
  • When a cell of the virus dies—which happens often, as the cells have a six-week life cycle—the corpse that is left behind is itself toxic and so further poisons your body. As with viral byproduct, this problem becomes more severe as EBV’s army grows, creating fatigue.
  • The poisons EBV creates through these two processes have the ability to generate a neurotoxin—i.e., a poison that disrupts nerve function and confuses your immune system.

The issues that may result from an aggressive variety of EBV nesting in your organs include:

  • Your liver performing so sluggishly that it does a poor job of flushing toxins out of your system.
  • Hepatitis C. (EBV is actually the primary cause of hepatitis C.)
  • Your liver’s sluggish performance leading to the lowering of your stomach’s hydrochloric acid and your intestinal tract starting to become toxic. This, in turn, can result in some food not being fully digested and instead putrefying in your intestinal tract, resulting in bloating and/or constipation.
  • Your developing sensitivities to foods that never caused you problems before. This happens when the virus consumes a food it likes, such as cheese, and transforms it into something your body doesn’t recognize.
  • The virus bides its time until it senses stress-related hormones indicating you’re in an especially vulnerable state—say, as a result of burning the candle at both ends, enduring a severe emotional blow, or suffering a physical jolt such as being in a car accident—or when it senses you’re undergoing hormonal upheavals, such as during pregnancy or menopause.

Stage 4

The ultimate goal of the Epstein-Barr virus is to leave your thyroid and inflame your central nervous system.

Your immune system normally wouldn’t allow this to happen but remember your immune system is anything from normal at this point.EBV has successfully worn you down in Stage Three by entering your thyroid, and if on top of that you abruptly get clobbered with some physical or severe emotional injury, the virus will take advantage of your vulnerability and start to cause a multitude of strange symptoms that range from heart palpitations to generalized aches and pains to nerve pain.

An example of this was shortly after turning eighteen just two years after having EBV in high school I was in a motor vehicle accident, getting surgery, breaking my femur and shattering my patella and then feeling awful for much longer than would be expected from the injury alone.Blood tests, X-rays, and MRIs will reveal nothing was wrong, so doctors blamed it on PTSD from the car accident. Stage Four Epstein-Barr is, therefore, a major source of mystery illnesses—that is, problems that cause doctors massive confusion.

The issues that result from this viral inflammation can include:

  • muscle pain
  • joint pain
  • painful tender points
  • back pain, tingling and/or numbness in the hands and feet
  • migraines
  • ongoing fatigue
  • dizziness, insomnia
  • unrestful sleep
  • night sweats

Patients with these issues are sometimes diagnosed as having fibromyalgia, chronic fatigue syndrome, or rheumatoid arthritis, all of which are collections of symptoms that medical communities admit they don’t understand and for which they have no cure. In such cases, the patients are given inappropriate treatments that don’t begin to address the real culprit—because these mystery illnesses are really Stage Four Epstein-Barr

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How to get rid of EPV ?

The following herbs and supplements (listed in rough order ) can further strengthen your immune system and aid your body in healing from the virus’s effects. Unfortunately, most doctors do not treat EBV other than some things like Ibuprofen and steroids to deal with the symptoms in the first two stages. Sadly this way of treating never really kills the virus nor does it keep you from getting recurrent flares.

The Supplements with a star at the end are what I take on a daily basis!

  • Cat’s claw: herb that reduces EBV and cofactors such as strep A and strep B.
  • HerpEze– Helps with cold sores and viral load
  • Silver hydrosol: lowers EBV viral load. *
  • Zinc– strengthens the immune system and protects the thyroid from EBV inflammation. *
  • Vitamin B12 : strengthens the central nervous system. Make sure to get a METHYLATED FORM!!!
  • Licorice root: lowers EBV production and strengthens the adrenals and kidneys.
  • Lemon balm: antiviral and antibacterial. Kills EBV cells and strengthens the immune system.
  • 5-MTHF (5-methyltetrahydrofolate): helps strengthen the endocrine system and central nervous system.
  • Selenium-strengthens and protects the central nervous system.
  • Red marine algae: powerful antiviral that removes heavy metals such as mercury and reduces viral load.
  • L-lysine– lowers EBV load and acts as a central nervous system anti-inflammatory. *
  • Spirulina (preferably from Hawaii): rebuilds the central nervous system and eliminates heavy metals.
  • Ester-C: strengthens the immune system and flushes EBV toxins from the liver. *
  • Nettle leaf: provides vital micronutrients to the brain, blood, and central nervous system. *
  • Monolaurin: antiviral; breaks down EBV load and reduces cofactors. *
  • Elderberry: antiviral; strengthens the immune system. *
  • Red clover: cleanses the liver, lymphatic system, and spleen of neurotoxins from EBV.
  • Star anise: antiviral; helps destroy EBV in the liver and thyroid.
  • Curcumin: component of turmeric that helps strengthen the endocrine system and central nervous system.
  • PROBIOTICS– We use GutPro after many trials with probiotics this was the best, no d-lactate, no strep strains, no allergens! THIS WAS KEY TO HEALING MY STOMACH WHICH HELPED HEAL MY IMMUNE SYSTEM!*

MY MIRACLE SUPPLEMENT to help with the pain, fatigue and brain fog has been CBD Oil! You can read more about the benefits in this article. But we use CBD Pure it is the best on the market and most affordable!


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Testing for EBV

The first step of the healing process is to know the cause of your suffering is Epstein-Barr—and for that will require continual testing and persistence on your part. EPV should be retested every couple weeks if showing clinical symptoms and especially during a flare. The EPV panel above shows you how to determine if you have an active EPV infection and if you ever did have an EPV infection at some point. Its effectiveness stems from hiding in the shadows so that neither you nor your body’s immune system can sense its presence. Once you find out EBV is causing your symptoms things are different for you. If you have EBV, you now have a mind-body understanding of what’s causing your health problems. From this alone, your immune system will strengthen and the virus will naturally weaken. So when it comes to fighting EBV, in a very real sense, knowledge is power!

For more questions on our battle with EBV and how our treatment is going please feel free to always email us at 3withadhd@gmail.com

 

Related Posts:

Heal the Gut First…Probiotics are Key!
CBD Oil…My Miracle Supplement for my ADHD/Anxiety!
Natural Supplements for Chronic Epstein-Barr Virus

Comments

  1. Traci says

    July 6, 2016 at 1:17 pm

    That is a lot of herbs and supplements. Have you found, in your experience, any combo supplements that help?

    Reply
    • Niki says

      September 14, 2017 at 3:59 pm

      Valtrex an antiviral destroyed it.

      Reply
      • Shar says

        April 14, 2018 at 12:22 pm

        how long did it take to heal with valtrex?

        Reply
        • Cyn Rogalski says

          December 11, 2019 at 9:56 pm

          I take 2000-3000mg Valtrex((there is a generic) upon first sign of a fever blister. Then 2000mg for three days, then 1000mg a day until it’s gone.

          Reply
    • Lorraine Minoati says

      April 17, 2018 at 11:43 pm

      I had a severe case of mono when I was 19 almost died. Now I have am gluten intolerant,have these sores that show up on my elbows and knees and severe fatigue. Doctor giving me levithyroxide,sulfamiazine and vitamen d but still tired and night sweats. All these symptoms make semse because I have most. Is there a combination of herbs I. can take

      Reply
  2. Corey says

    September 14, 2016 at 1:20 pm

    This is a terrific explanation of exactly what I’ve been experiencing. On my latest doctor’s visit, after having been diagnosed with Hashimoto’s Thryoiditis 2 years ago and suffering from debilitating feet and fingers joint pain, I finally requested the EBV test about a month ago, since the thyroid meds weren’t working. Yep. EBV reactivation. I suspect that it has caused the Hashimoto’s and has been with me for decades. My entire 30s I spent a massive amount of time lying on the couch because I was exhausted. Around 5 years ago my feet and finger joints started hurting and swelling, practically overnight. I suspect perimenopause is what triggered EBV reactivation. I’m in stage 4.

    I’m now on the autoimmune protocol/paleo diet and taking all sorts of supplements to tamp down the EBV and make it dormant once again. It may require me to do this or a version of paleo for the rest of my life, but I will gladly sacrifice to not be in pain.

    Reply
    • Malu says

      October 22, 2016 at 1:46 pm

      What supplements does your doctor have you taking & in what size dosage?

      Malu

      Reply
  3. Danielle says

    October 15, 2016 at 10:24 am

    Does EBV cause MS type symptoms or mimic MS, especially nerve damage and brain & spinal chord lesions in stage 4 if left untreated?

    Reply
    • Angela says

      October 16, 2016 at 12:40 pm

      Sent you an email!

      Reply
      • Mandy Friend says

        October 18, 2016 at 11:20 am

        Can you send me the same email? I suspect I have ms but this is an interesting suspect too…

        Reply
        • Steph says

          November 1, 2016 at 9:35 pm

          I have been living a nightmare for the past 10 months..
          diagnosed with EBV. Treat for symptoms is all you can do. All 50 symptoms have changed throughout the yr and became unbearable and life changing. Narcoleptic pill and Red Bull during the day( if I’m not flaring it worked ok) and melatonin,lavender and Tylenol pm at night. The past 6 weeks I have had to have Valium to help the pain. I refuse to be a drug addict. I
          just got home from doing chelation and stem cell in Mexico. I had another bacteria in my body that is only tested in a few states in the US. It laid dormant in my body until EBV struck. That will heal w tetracycline but the EBV I’m taking homeopathic drops.. several supplements and a diet free from sugar, gluten, gmo and msg. I was told it may take 2 yrs to get it under control. I will go back to Mexico in 4 months. Btw my father is a physician in the United States and he has been treating people w this virus for 2-8 yrs..
          If you want any more info I would be happy to share.

          Reply
          • Tami says

            April 20, 2017 at 2:53 am

            Why would you go to Mexico for treatment when you have a father that is not only a Dr., he treats EBVirus as well. What state does your father practice in? If he is aware of EBV, succesfullytreating this and is in or near the New England areal, then I am very interested in seeking him out for treatment. If you will so graciously provide me with his name and contact info, I would be so grateful.

          • Janette says

            November 5, 2017 at 12:45 am

            I would love the information on your fathers practice send me a private email to janettehellen@aol.com. Thank you

          • Wendy Zubek says

            April 19, 2018 at 7:50 am

            I would be interested in info please.

          • Buffy Jo says

            April 27, 2018 at 10:41 pm

            buffy.olson@yahoo.com
            My ebv igg is over 400. My life is in total dismay. Extreme fatigue, pain all over, never ending pain, anxiety, left sided pains, major weight gain, low libido, headaches, weakness, constipation, sweats, panic attacks, sick all the time. Several surgerys, including gastric bypass and hysterectomy.

          • Joy says

            June 27, 2018 at 4:29 pm

            I would like your father’s information please!! Can you email me at MyHealingJoy@gmail.com ?

          • Carrie bUckner says

            December 1, 2019 at 11:50 am

            I would like your fathers info..

        • Shannon says

          January 23, 2017 at 11:32 pm

          I would love the email as well. This is basically my story.

          Reply
        • Lei Robinson says

          June 3, 2020 at 8:24 am

          I have MS and would like an email like you sentseveral years ago. Epstein Barr test is elevated for the last year. I was fine and got sick last year and had to file for social security disability.

          Reply
      • danielle brodeur says

        November 7, 2016 at 4:35 pm

        My daughter was diagnosed with MS, not sure I agree. Can you also send me the email for the girl that has symptoms and lesions? Interested to read more about Epstein Barre similarities.
        Thanks!

        Reply
        • Nina says

          January 23, 2017 at 3:40 pm

          A family member has the same issue. Could you please send me more info about the ms symptoms and the similarities to the virus

          Reply
        • Shar says

          April 14, 2018 at 12:24 pm

          I also am interested in lesions and any ebv info. Thank you

          Reply
      • Robert says

        March 16, 2017 at 5:09 pm

        Dear Angela,,

        I read your post with great interest. Would you please me a list of the supplements you found most helpful.

        Thanks you.

        Reply
      • Kim says

        May 24, 2017 at 8:03 pm

        This is my story too and would love to hear about what dosing and progress you have made. I’m finding it really difficult to figure out how to take this long list of supplements. I am likely Stage 4 as well. 20 plus years of pain and it took me this long to take the right test to diagnose this.

        Reply
        • Selma matassa says

          August 26, 2017 at 10:41 pm

          I have been suffering since my last child was born! I have hoshimotos disease and was never tested for Epstein Barr but after reading all of the messages I’m sure that I must have it! My health issues are far to many to name! Send me The name of a doctor in the Baton Rouge area who specializes in this virus! Help!

          Reply
      • Mama Asbell says

        October 24, 2017 at 1:26 pm

        I would love to also be included with the email. I got mono when I was 19 and have battled EBV ever since. Thank you very much!

        Reply
      • stacy says

        April 18, 2018 at 10:44 am

        I am hoping you receive this message!
        Could you please send me the email? I had a horrible case of Mono as a teen (24 years ago) and was just diagnosed with MS a year and a half ago at age 36.

        Just to lay it out there, maybe there is a connection, maybe someone else reading this can relate…
        my major illnesses so far in my life…

        Age 6- major outbreak of chicken pox
        Age 13-major case of Mono/Strep
        (adolescence several cases of Strep throat, ear and sinus infections)
        Age 20- diagnosed with severe depression (gave birth to daughter at age 19)
        Age 24- viral menengitis; quarantined in hospital for 5 days
        Age 33- lost hearing for a week
        Age 35- shingles
        Age 36 (January 2017)- relapsing-remitting Multiple Sclerosis; MRI showed 9 brain lesions, spinal fluid positive for 10 o-bands

        Reply
      • Wendy Zubek says

        May 17, 2018 at 5:49 pm

        could you please send me the same email

        Reply
      • Allison Boyle says

        September 7, 2018 at 3:09 am

        Hiya. This sounds similar to what I have been going through my whole life.
        Any chance you could forward me the details of EBV + MS symptoms?

        Thank you so much.
        Allison

        Reply
      • Andrea says

        September 9, 2018 at 12:18 am

        I’m curious of the same thing as far as lesions on the brain. Would love to hear from you 🙂

        Reply
    • Matt says

      January 22, 2018 at 8:38 am

      Can you email more info on your treatment, and kinda how it works! Thanks!!!
      matt@sulligentfirst.com

      Reply
  4. Rhonda says

    October 15, 2016 at 8:17 pm

    Do you feel that a person with EBV should do a cleanse?

    Reply
    • Angela says

      October 16, 2016 at 12:39 pm

      I feel with all viral and autoimmune issues you should always heal the gut first if you don’t you will just be spinning your wheels with treatment! That is from my own personal experience though with both myself and my son who has lyme and EBV

      Reply
      • Stacy Viers says

        December 15, 2016 at 4:01 pm

        My daughter is 11 and was diagnosed with Lyme and mono in may. After months of antibiotics she is still suffering. We will se a neurologist tomorrow because she is constantly dizzy and nauseous and has numb arms and legs for hours at a time. We are so frustrated and at a loss. Your is the first that I have read of someone having Lyme and mono and was curious as the what your experience has been.

        Reply
        • Angela says

          December 18, 2016 at 2:23 pm

          Stacy send me an email anytime 3withadhd@gmail.com

          Reply
          • Courtney says

            June 1, 2018 at 7:46 pm

            Hello, I had mono when I was 14. I am now almost 30 and for the past 2 years on and off I have had sore red throat and sore red vulva. My gyno, tested me for everything. It was all negative. She then tested me for epstien barr and it was positive. So for 2 months I have been fighting this reactivation. I am very active work, gym, and walking. I have been out of work for 3 weeks now and I feel better. A few weeks ago I had headaches, fatigue, and my sinuses were terrible. Now it’s my throat and my vulva but I feel better than I did. I’ve been drinking enchiea tea, organic multi vitamins,vitamin C, and I just started 600mg a day of monolaurin. Do you have any suggestions for ne so i can have a normal life again. Please help. I have no one to talk to that has any experience with this. I will be so grateful to hear from you. Thank you so much.

  5. Misty says

    October 17, 2016 at 10:08 am

    I am a 41-year-old female. I Started slowly becoming sick one month after I had my gallbladder taken out, 5 years ago. Each year the symptoms I am going to describe become worse every year….extreme fatigue, daily fever up to 102.0, brain fog, muscle and joint pain (hurts to touch me), nausea, night sweats, muscle weakness (can’t use my arms long, they start to tremble as well as my legs do this), dry mouth, sensitivity to sun, bouts with insomnia, blurry vision. I’ve been to every specialist and have had numerous blood work and scans. My CRP and Sedan Rate are usually high (they say I have a lot of inflammation in my body. I had mono when I was 16, 2 years later diagnosed with hyperthyroidism, Graves disease of the eyes, and had a goiter….took radioactive iodine which destroyed my thyroid, so I am on Synthroid for hypothyroidism. I am told I have fibromyalgia and chronic fatigue syndrome. They CAN NOT understand why I run fever everyday, they say, “Well thats just go one be you the rest of your life!” I would love answers!!!!!! I have cried so many tears, had to quit my most favorite job 8 months ago, that I had been doing for 10 years. I do have a rheumatologist I see every 3 to 4 months and I’ve had 2 positive ANAs….I’ve been told it maybe lupus. I’m tired of the maybes I WANT ANSWERS!!!! Is there anyone with out there with same issues, any answers? Suggestions?

    Reply
    • Lacey says

      September 26, 2017 at 12:37 pm

      I have all these issues. Let me know if you found any answers please

      Reply
  6. Rachel says

    October 23, 2016 at 11:16 pm

    Please see a functional medical doctor. They take a bottoms up approach, so rather than attack the issues with band aids, they can help find the underlying causes. Wishing you better health!!!

    Reply
  7. Amy says

    October 25, 2016 at 4:47 pm

    I was just diagnosed today and was left with no answers. My doctor was apathic and I left in tears feeling both relief that I was not a hypochondriac and despair because I didn’t know what to do. This has been by far the MOST helpful article I have read on the subject!!! And now I finally know where hese stupid hive-like rashes are coming from!! Thank you!!!!

    Reply
  8. Amy says

    October 25, 2016 at 5:26 pm

    *apethetic, I meant. I’m curious, some message boards have mentioned immunologist? Did you go that route? I’m literally in limbo and utterly clueless.

    Reply
  9. Denice Marnien says

    October 28, 2016 at 1:13 pm

    I was diagnosed w EPV back n high school, many moons ago, and was always exhausted but I just assumed it was because I worked two jobs and was going to college. I had my first child at 31, and was constantly falling asleep. After a year of trying to figure out why I couldn’t stay awake, my dr sent me for a sleep study and was diagnosed w/ Narcolepsy and pathological hypersomnia, which I never knew what either of these things were. That was 7 years ago, so now I’m 38, and having serious night sweats almost every night now, and even though I’m on medication for my Narcolepsy, lately my medication is very little help, and I could seriously sleep all day long…so I told my Narcolepsy specialists about these night sweats and he’s directed me to go c my Ob/GYN. So I saw him this week and explained the only thing I can think of is that I’m possibly going thru premenopausal, cause my periods have not been regular lately, and are very light when I do have it, but my Ob/GYN doesn’t think it’s premenopausal at all, so he is sending me out for a series of blood work that I need to get done at the end of November, two days before my second appointment w my OB/GYN, because he also wants to c if and when I get my period in November…I’m really hoping it’s nothing serious…oh and also my hair started breaking off and splitting like last winter, so not sure if that all is another symptom of premenopausal or something else….my hair did get much better n the spring, and I’m hoping it doesn’t happen again this winter…

    Your article was great!! I’ve never commented on anyone’s blogs or this stuff, but I could total relate to your article, esp when you said about having a child could change your body, that is what totally happened to me, and I also had a serious car accident where my tibia and fibula was, I now have a titanium rod. If u have any thoughts or comments as to my situation, I would greatly appreciate it so much!! My Narcolepsy dr also advised me to go gluten free for me to feel much better inside and out…he directed me to read this book Brain Maker by David Perlmutter, MD. It’s the power of gut microbes to heal and protect your brain and your life…if you havent read this, you should check it out

    Reply
  10. Kim says

    November 7, 2016 at 3:30 pm

    Wow that is a very interesting find. I have had hashimoto Thyroid for 11 yrs and the last 2 yrs I am so tired. I assumed this was because its been 3 yrs trying to diagnosis my son with what I believe is PANS. He also tested for EVB but no dr did anything. I will bring this info to my appt with Dr Yourns in RI this week. Thanks

    Reply
  11. Nancy says

    December 17, 2016 at 12:36 pm

    Thank you … wonderful simple compilation of much needed information. Will share!

    Reply
  12. April Harig says

    December 19, 2016 at 12:43 pm

    I was diagnosed with Caebv about 3 yrs ago, and it’s gotten worse with every passing day, I have scars from head to toe from these horrible skin eruptions from caebv now I have sores in my nose and eyes along with a daily fever, swollen lymph nodes, aches and pains, numb tingling feet and hands also extreme exhaustion and everything I read is so Grimm it really scares me. I been buying the vitamin regimen a little at a time due to inability to work …..I would love any advice you can give me.

    Reply
    • Emily says

      February 6, 2020 at 10:17 pm

      Hi April. I know your comment is from several years ago but I was curious as to how you are doing now? I have EBV and the skin eruptions have gotten worse lately. Not to mention all of the other debilitating symptoms…

      Reply
      • Angela says

        September 28, 2020 at 9:32 pm

        Skin eruptions are good as long as I keep treating my Yeast overgrowth systemically and on my skin!

        Reply
  13. Meredith says

    December 19, 2016 at 4:23 pm

    I would love more info on EBV. I was diagnosed with EBV 8 years ago. I have had extremely bad headaches for the last 8 years. Just had surgery on my sinuses for Silent Sinus Syndrome. It had to be fixed or my eye would be droopy in 4-5 years. But it was worth a shot to fix the headaches. It’s been a month since my surgery and still have headaches. I have been to many doctors and no one seems too concerned about my headaches. I have been to the eye dr, dentist, neurologist, chiropractor, gluten free diet, tmj treatment for 5 months, etc. I was taking 6-9 ibuprofen each day. Then switched to excedrine, and took it everyday. Which is not good for the liver.
    I have no energy and it effects my work and home life. I’m just ready for answers.

    Reply
    • Stephanie Abercrombie says

      January 29, 2017 at 8:49 pm

      Hey Meredith,

      I would also like more info on EBV as well. I have read a little about chronic EBV aND ithe is vey interesting that evendors having mono that some people have high levels of EBV in their system and it cues thesee people to be chronically sick. I got mono ( due to horrible stress from my job as a teacher). I have been very lethargic and constantly sick with either a cold that last for weeks, a sore throat, swollen glands, monthly sinus infections and daily migraines. I also have really bad brain fog and insomina which might be unrelated. I have been to family dr., urgent cares, allergist, ENT, sinus dr, neuroligist, and hemotologist since I have a low white blood count for years and no answers and just having all the Doctors going in circles telling me the wrong things. I had a blood transfusion 6 years ago when I deliver my daughter do I have heard that EBV can stay in your system for years due to things like a blood transfusion. I have been sick ever since her pregnancy and birth. I would go through waves of feeling OK but I would catch any kind of sickness quickly. Then when I got mono 4 years later I became even worse to recover from those illnesses and the sinus and migraine headaches along with exhaustion has been awful no matter the amount of exercise or sleep. I completely understand your frustration and I am feeling it as well. I never have energy to do anything and I know my family is so tired if me constantly being sick with no anwers -because I know I am. Maybe we can bounce ideas, thoughts or questions off each other when they arise. Hope you feel better and can you tell me more about silent sinus syndrome, I am very curious. Thank you so much and have a great night.

      Stephanie

      Reply
  14. Melissa says

    December 29, 2016 at 9:27 am

    I was just diagnosed with “chronic fatigue”. Your article has helped connect so many dots for me. Thank you for all this information.

    Reply
  15. Michelle says

    January 6, 2017 at 12:43 pm

    Great article. Please send me any information about lyme and mono.

    Reply
  16. Jj says

    January 10, 2017 at 8:17 pm

    Hello great read would love more info on your supplements how to use and dosage

    Reply
  17. Cat logie says

    January 15, 2017 at 3:00 pm

    Excellent information, I’m convinced my sister has Lyme disease with a co infection of Epstein Barr Virus as her condition has been worsening over the past few years with numerous tests and no diagnosis despite the fact she was bitten by a tick and had the tell tale bullseye rash! Wasn’t sure about EBV until I found these pics but now I’m certain as the lesions are remarkably similar – more like pits which are very painful and bleed with minimum contact. Have sent you a couple of emails Angela I hope thats ok.
    For anyone else thinking they may be in the same boat here this is a list of my sisters symptoms which are getting worse as time goes on (we are in Scotland btw)
    :-
    Swollen joints, especially hands,fingers and toes
    Involuntary movements of upper body – abrupt jerking and head twitching
    Constant severe lethargy, bed/couch bound
    Severe lack of concentration and memory
    Severe mood swings with depression and anxiety
    Contact pain
    Over heating – she lives on ice lollies!
    Skin pits/lesions

    Please note prior to this my sis was entirely independent, an active single mother of two, always on the go with work and activities. She now relies on my mother and myself daily to take care of her and the children. From cleaning, cooking to school runs etc she literaly spends most of the day/night in pain, exhausted and upset on the couch. Very sad and very frustrating! We are currently looking into going abroad for further testing as our faith in the health system here has extinguished. We are seriously concerned she is going to die or give up completely not to mention the fact her neurological symptoms could end up causing a stroke or similar/worse.
    Good luck to everyone here and I hope we all get the health and quality of life we deserve! Regards, Cat.

    Reply
    • Ginger says

      April 29, 2017 at 5:59 pm

      Hey has your sister been tested for heavy metals ? Her symptoms sound similar to mercury toxicity… I know because I have Lyme, EBV, mycoplasma … I name it. But at the root of these… one reason they may flourish … is heavy metals which get into the brain and than candida can also get systemic. Get a hair mineral test – so much more useful than blood or
      Urine.

      Reply
  18. Molly Robins says

    March 1, 2017 at 7:17 pm

    This is a great explanation of chronic EBV. I have this as well as Lyme and chronic EBV is so poorly understood. Especially the occasional flare-ups that occur when sick or stresed. What I like in this article is the information that it is possible to treat this!! Very very few conventional doctors will admit or understand this. My favorite ways to treat these flare-ups are by consuming colloidal silver, coconut oil, and the herbs larrea tridentata and lomatium

    Reply
  19. Cecilia says

    March 9, 2017 at 12:51 am

    I am so glad I have lots of answers to all the exhaustion, the brain fog, what I have been told is fibromyalgia, the sores on my lips and in my nose, the headaches and the sinus infections i even have what seems to be recurring conjunctivitis in my eyes usually one,
    I had a severe case of mono @14-15 uts of age my spleen was enlarged, liver was affected and became jaundice plus strep it was horrible. I haven’t been diagnosed with ebv as I have been researching this on my own today after feeling so frustrated and alone not to say starting to feel as if I was losing my mind because it is maybe this or maybe that let’s treat and see if it goes away!!! ? So tired of feeling like a hypochondriac when I know that what I am going through is so very REAL!!
    Thank you alll got your comments, I will definitely try all, I am drinking the tea now and already feel so much better knowing that I Am NOT alone and there is hope atleast for now how to avoid a flare up!!!
    Thanks again
    Cecilia
    …
    …,

    Reply
  20. Robert says

    March 16, 2017 at 4:22 pm

    I have been doing some research on EB virus (and ADHD) and your post was one of the citations that was listed I have inattentive ADHD and just tested positive for the EB antigen.

    Fortunate to be a patient at the Amen clinic in Atlanta that takes a functional medicine approach to brain health.
    It is important to have a complete functional assessment.

    L-lysine has been reported in anecdotal studies to be very important in treating EB virus.

    Needless to say I very much appreciate the information posted here as it increases awareness for a
    very troubling issue.

    Reply
  21. Sarah says

    March 21, 2017 at 3:27 pm

    I too, have now been diagnosed with ebv. Severe headaches, insomnia, anxiety, heart beating rapidly, constant chronic fatigue, pain and numbness. I am so sick of feeling like this. I need answers. I am tired of doing tests. I cant go out anywhere, withour having an attack. I just started all of this half a year back. I wake up every morning with a sore throat. I have done a lot of blood tests, and i am perfectly healthy, except for the ebv. I would like to know what i can do to make it dormant. I am tryin lots of zinc, vit c, magnesium, vit b12, it seems to help a little. But i am getting to the point of hopelessness. Help! I have gone to a paleo diet, i dont eat sugar, don’t drink coffee anymore, no gluten. Is there something else i can do to make this go dormant???

    Reply
    • MElody says

      July 14, 2017 at 12:53 pm

      How are you feeling now, Sarah?

      Reply
  22. Denise says

    May 12, 2017 at 3:30 am

    I am interested to try some of your suggestions for treatment. I was diagnosed 4 years ago, but have been symptomatic much longer. I am seeing an MD who says she’s specialized in ME/CFS. She has really only treated the symptoms and put me on antivirals. Then last year my son got a light case of chicken pox. Just shortly after that, I had a pretty severe cases of shingles. Dermatologist said it most likely wasn’t related, but I can’t help think it most likely was. I’d never had a shingles episode before. Anyways, he put me on an very intense round of the same antivirals. On my next round of EBV labs, my levels were normal (after positive levels for 3 years). So my EBV doctor took me off of antivirals. I had been feeling better and thought I was on my way to beat this thing. This was all last summer. Sometime in the fall I started feeling not so great again. In January of this year I tested positive for EBV again!! By March, I felt awful again. I think I’m in the middle of a major flare right now because I’m having the worst of all of my symptoms! This has been going on for almost 2 weeks. I haven’t hardly been outside my house, if I’m not just curled up in bed all day. I feel so guilty not being able to care for and provide for my husband and 2 kids. It’s just been an awful time! The EBV doctor isn’t doing anything new. She just draws my labs and tells me to keep on, “it just takes time” is what she tells me. I need to start doing more, I just didn’t know where to begin. I’m on full disability now and on very limited income. I can’t afford a ton of supplements in addition to my medications. Anything in particular you suggest I try first?

    Reply
  23. Elizabeth says

    June 8, 2017 at 4:35 am

    Since I read this article as I’m curious about EBV…I want to say this to all those who mentioned they have MS.

    My view: all RRMS is mercury poisoning. I’ve been healing myself for 15 years and I’m still chelating out the mercury but it is why I was dx with MS.

    Does mercury reactivate EBV? Maybe. It makes me want to go after it since I have one big issue I still struggle with and that’s my sleep.

    My systems would mirror EBV but I know the cause of my problems – mercury mostly from my dental amalgams.

    Reply
  24. Elizabeth says

    June 8, 2017 at 4:42 am

    and to Sarah, the comment above mine, I’m going to add Red Marine algae to what I do.

    I have taken chlorella for years which is amazing. But I get a two-fer with adding red algae – binds/chelates mercury and is anti-viral (stop EBV).

    That and monolaurin I would try if I had the symptoms you do. Best of luck.

    Reply
  25. Rachel says

    August 31, 2017 at 3:01 am

    Hi,
    Fascinating article and ringing many alarms for me. I am 48yrs old- had mono (glandular fever commonly called in UK) at primary school – a good 30+years ago! I was very ill for a month or two-
    Always wondered if this early infection had weakened my immune system somehow as over the years seem to pick up viruses and get run down easily.
    I am now a part-time teacher and get extremely tired as teachers do! Especially end of term/year- this summer term finished with me having a week of severe migraines and chronic fatigue, stiff neck, aches, sensitivity to light, temperature, smell, blurry vision absolute exhaustion- the migraines have eased but 5weeks in to summer and I still have all other symptoms- feel very ‘not right’ Dr has run blood tests for a number of things (I said I’d already had mono- so I don’t think she ran that) tested for Lymes- all bloods ok- I have an appt to see her tomorrow as I still feel awful and have been wondering if it’s CFS or MS…could it be EBV? Now I’ve read your article…? Could you please email me the info and I can show the Dr?
    Thank you!

    Reply
  26. Laura says

    September 29, 2017 at 9:14 pm

    Could you elaborate more on the rash you got? Thanks.

    Reply
  27. Penney says

    November 7, 2017 at 11:36 pm

    Hello,
    This is a great article. I, too, have chronic EBV and am on a mission to eradicate it! It’s taken my life from me, and I WANT IT BACK! I’m 52, had mono 5 yrs ago, and have been on a downward spiral ever since. I was an active Mom of 2 boys, worked full time plus as an RN in labor and delivery and had an active social life. I had to give up L&D for an easier, part time job, and I hardly do anything besides work now. I recently saw an osteopath who does alternative treatments. Has anyone else done UBI (ultraviolet blood irradiation)? I’m finishing up those then moving on to IV chelation while also taking multiple oral supplements., many of which are listed above. I absolutely agree with fixing the gut – working on that, too! While I’m sorry so many others are also suffering, it is comforting to know that I’m not alone. Keep the faith – we CAN beat this!

    Reply
  28. Lynnieb says

    November 19, 2017 at 11:35 pm

    My son is 24 years old and has been struggling with extreme fatigue, blurry vision and trouble concentrating. I was the one to finally asked a dr to test him for EBV and it came out positive to a recent virus. He was first diagnosed with strep throat and given antibiotics even though he had tested negative. His symptoms have been going on for 9 months. He goes to work then comes home and sleeps. He should be in the prime of his life instead he is living half a life. Heart wrenching. He is starting a strict no sugar,no starch diet, will do a colon cleanse, herbs and the gut health that was recommended. I am advising him what to try next because all the drs we have seen say it just takes time and try to get rest. Unbelievable frustrating, this article to me explains exactly what is going on and why some people just don’t recover from rest. He is no better and no worse than he was 9 months ago, the immune system thinks all is well, is exactly right but it couldn’t be more wrong! Any help or advice is greatly appreciated.

    Reply
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    December 30, 2017 at 10:05 am

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  30. Denton says

    December 31, 2017 at 10:24 pm

    EBV is the plaque of our century. It has been mutated by chemicals and has become the harbinger of pain and suffering.
    The virus itself consumes mercury and heavy metals and other chemicals as mentioned above to create a potent neurotoxin.

    After suffering through several of the above mentioned symptoms. I was able to find Anthony Williams.

    I have taken all of the above combinations of herbs in many different variations. I think the most improvement comes from a diet that is very clean. The supplements are just perhaps 25% of the the solution.

    Also drinking lots of water has helped . My theory is that it thins down the neuro toxins.

    There are several foods not to eat as they feed the virus . This information is contained in his book.

    Yes there is the part where you will need to let go of all that you think you know.

    Reply
  31. LIsa says

    January 1, 2018 at 8:55 pm

    My 16 year old son has ADHD and was recently diagnosed with mono. As we prepare to slowly return him to school, I am wondering if he should take his prescribed Adderall? He has been off all meds, except vitamins for 3 weeks.. is it safe to take a stimulant while recovering from mono?

    Reply
  32. Shannon says

    April 1, 2018 at 3:13 am

    Please send me any new or old info thanks best of luck to you

    Reply
    • Angela says

      April 6, 2018 at 11:39 am

      sent!

      Reply
  33. Renee says

    April 10, 2018 at 9:13 pm

    I am looking to get more info on this and how to do a cleanse. I was told I had active mono about two years ago but I do not believe my troubles started there. I think my virus reactivated. I have also been diagnosed as having mthfr after recurring pregnancy loss many years ago, mycoplasma, migraines and what I believe to be fibromyalgia for quite some time
    My son had a blood transfusion at birth and he is ADHD. After reading your piece I am wondering if this virus is in his system and why he has adhd and moodiness. I treated his adhd for approximately 1 year with methylphenidate but recently decided to go the all natural approach and we are treating with vitamins and essential oils. Would love to be given advise on how to do a thorough cleanse for him and myself

    Reply
  34. Emily Curtiss says

    May 2, 2018 at 12:02 pm

    Thanks for the community of comments. I had mono for 3 months as teenager, no symptoms for decades, but for increasing colds, occasional 3 week flu, progressed to walking pneumonia, bronchial infection 3 yrs in a row in my 40’s, heart palpitations in my 50’s. After 10 yrs of eldercare, working full-time, house renovation, daughter”s wedding at home, my body collapsed, and overnight my body was as different as night and day. Vertigo, insomnia, chronic fatigue, problems with thyroid, adrenals. I had to retire as a result, and have been searching for answers the past 3.5 years. I get hyperbaric oxygen, IV, and laser treatments, changed the way I eat, and take many supplements. Also in process of getting mercury amalgam fillings removed by holistic dentist.

    Reply
  35. Jolene says

    May 21, 2018 at 10:07 pm

    Hi. Did you do a cleanse to start healing process? Also, what mg does did you use for the CBD oil?

    Thanks!

    Reply
    • Angela says

      May 22, 2018 at 9:13 pm

      I did do a cleanse….https://amzn.to/2kjL3JM
      as to the cbd oil I started with 300 mg and ordered it from ….http://www.cbdpure.com?AFFID=331884

      Reply
  36. PatriciA Eno says

    July 11, 2018 at 9:49 pm

    Awesome article.
    Shed the light I needed on EBV.
    Thank you so much.
    An answer to prayer.

    Reply
  37. aly says

    July 27, 2018 at 3:30 pm

    This is one of the most helpful articles I’ve come across regarding complications of EBV. Thank you for writing this! I’m quite certain that my daughter contracted mono in March – since then, she has developed persistent migraines. Her symptoms are a low grade headache that never goes away, but her extreme nausea and head pain will flare intermittently throughout the day. This has been her normal for months now. It’s like a dimmer switch, the pain and nausea go up and down but never fully disappear. I will try her on some of these supplements asap. Has anyone fully recovered from this?

    Reply

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