Eppstein Barr, Chronic Fatigue & Immune Dysfunction Syndrome, Fibromyalgia

  It is extremely important to realize that no matter how deep your sense of fatigue may be, there is always a spark of energy alive in your body.  Deepak Chopra

It’s that time of year when cold and flu viruses run rampant. This year has been a tough year for many people. It seems like more and more, these viruses are getting harder for our immune systems to fight. Of course, the best way to fight them is rest – something many of us can’t do. Work and family situations demand our presence. But what happens when you have a virus living within you that doesn’t give you the choice of working or resting?

QUESTION: What is the best way to cover a sneeze or your cough?
ANSWER: Use the inside of your elbow

QUESTION: How long and how should I wash my hands?
ANSWER: According to Lysol.com:

  • Wet your hands and apply liquid, bar, or powder soap.
  • Rub hands together vigorously to make a lather, and scrub all surfaces, including under and around the nails.
  • Continue for 20 seconds. It takes that long for the soap and scrubbing action to dislodge and remove stubborn germs. (Need a timer? Imagine singing “Happy Birthday” all the way through — twice.)
  • Rinse hands well under running water.
  • Dry your hands using a paper towel or air dryer.
  • If possible, use your paper towel to turn off the faucet.

QUESTION: How long can cold and flu viruses live?
ANSWER: A cold can last 7 to 8 days in your system. On surfaces, a cold virus can survive to up to 7 days. A flu can last 4-5 days, although the stomach or intestinal flu can last weeks. On surfaces, flu viruses can survive for only 2 days.

Today, I want to discuss two of the many viruses that can live in our bodies forever. I know them well for, you see, I have them both -EBV and CFS. As a matter of fact, the CDC (Center for Disease Control and Prevention) estimate that in the US 95% of the adult population carry at least one – EBV (Eppstein Barr Virus) and usually aren’t even aware of it.

Eppstein Barr Virus (EBV)

EBV is a member of the herpesvirus family and is one of the most common human viruses. Infants become susceptible once they no longer have the mother’s antibody protection. In infants it’s rarely noticeable when they catch this virus or it may act like a common cold, the duration being short.
When young adults (not infected as infants) are infected, EBV causes mononucleosis. Although there are antibiotics to help aid in recovery of mono, the EBV virus remains alive but dormant in the human throat. For the majority of mono sufferers, they never have a problem with EBV nor is mono catchy once mononucleosis is cured. The EBV can reactivate at any time, but this lucky group of people never know it although they may feel a bit tired from time to time.
Unfortunately, there is always the chance that EBV will activate and cause symptoms that will last longer than 6 weeks and it’s not known why it may be triggered. It is also associated with Hodgkin’s Lymphoma, systemic lupus erythematosis and rheumatoid arthritis, among other autoimmune diseases. EBV can be determined by a blood test, although it is quite expensive of a test.

What Happens When Eppstein Barr Re-activates?

Symptoms similar to mononucleosis will appear and last up to 4 months. If the symptoms last longer than 4 months, it’s referred to as chronic EBV. The feeling of extreme tiredness is perhaps the worst of all these symptoms. Luckily, there is a blood test to determine if your EBV has activated.
Interestingly, it tells the level of the EBV within you. Once the virus goes dormant again, no symptoms remain.

My Story

The year was 1968. My mother met a young man she really liked and insisted I date him. Little did we know that he had mono at the time. Back then it was often referred to as the ‘Kissing Disease’ for obvious reasons, since the viurs is spread by saliva. I was quite ill for weeks and slept around the clock. Even strep throat didn’t compare to that sore throat. When I was finally better, the doctor warned me of the EBV and that it could easily activate at any time.

Over the years, whenever I stressed myself or over did anything for a long period, it would affect me by causing a sore throat and several days of sleeping. I often referred to myself as ‘Sleeping Beauty’ jokingly, but it really wasn’t funny. Still, I functioned fairly normally and was able to work although often sickly.
TRUE OR FALSE:  EBV occurs in nearly every country in the world and is the most common contangious virus.

ANSWER: True

TRUE OR FALSE: Once EBV enters the human system, it is there for life and alters the white blood cells normally associated with the immune system, causing them to reproduce rampantly.

ANSWER: True 

Chronic Fatigue and Immune Dysfunction Syndrome(CFS or CFDs)/Fibromyalgia and Retro-Viruses

Retro-virus

  A virus that is composed not of DNA but of RNA. Retroviruses have an enzyme, called reverse transcriptase, that gives them the unique property of transcribing their RNA into DNA after entering a cell. The retroviral DNA can then integrate into the chromosomal DNA of the host cell, to be expressed there.(MedicineNet.com)
Early findings were that Type A personalities are most prone to these illnesses.
This lovely virus (still unknown) can mutate on itself, making it difficult to pinpoint or identify it. Today, much research is done on this virus and one latest theory is that it is a bacteria. However, the CDC conducts its own research and if we are to believe anything, believe what the CDC finds.
Center for Disease Control
At least this virus is not contagious, but researchers still disagree on how someone comes down with the illnesses (CFS and Fibromyalgia are thought to be caused by this same virus).
Differentiation between the two is based on the person’s symptoms. People with CFS tend to have more upper respiratory infections and have little resistance against colds and flus. Fibromyalgic sufferers tend towards severe pain in their muscles/joints. Both suffer from similar symptoms including the severe fatigue, which is much worse than the EBV fatigue.

Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Symptoms affect several body systems and may include weakness, muscle pain, impaired memory and/or mental concentration, and insomnia, which can result in reduced participation in daily activities. (definition from the CDC)
 Symptoms of CFS include post-exertional malaise; unrefreshing sleep; widespread muscle and joint pain; sore throat; headaches of a type not previously experienced; cognitive difficulties; chronic, often severe, mental and physical exhaustion; and other characteristic symptoms in a previously healthy and active person. Persons with CFS may report additional symptoms including muscle weakness, increased sensitivity to light, sounds and smells, orthostatic intolerance, digestive disturbances, depression, and cardiac and respiratory problems.[7] It is unclear if these symptoms represent co-morbid conditions or are produced by an underlying etiology of CFS.[5] CFS symptoms vary from person to person in number, type, and severity (from Wikipedia)
This is not a modern day illness only. History shows that descriptions of this illness go far back in time. Unfortunately, there is no way to be sure, but it is estimated that at least 200 years ago this illness was noticed.
There are no medical tests to prove someone carries CFS/Fibromyalgia. Doctors rule out other illnesses by exams and tests. CFS can go dormant. Unfortunately it’s known to come back with a vengeance.

My Story

The year was 1989. The influenza had hit Utah and it was like a domino effect in offices. No one seemed to escape this flu.
At the time, I supervised 17 people and our office was hit hard, many suffering from additional ailments like bronchitis, pneumonia, and strep throat. Eventually, everyone got better. Everyone that is, except for me. I was constantly seeing one doctor or another. All doctors were stumped. Blood tests showed high antibodies but no infection. Finally, I switched doctors again.
I remember when I called the office, the nurse asked what was wrong. I said that I had a flu virus that wouldn’t go away. I remember waiting for the doctor to enter, praying that he would finally find the cause. He walked into the room, looked at me and started to laugh. “I know what you have,” he said. “Look at you. Look at your eyes.” He then asked a series of questions. “Are you getting a lot of sore throats? Do you have spots before your eyes, ringing in your ears? Is your stomach upset? Are you nauseated? Do you hurt everywhere? Are you so tired you find it difficult to raise your hands or walk?” He said he’d do a blood test for EBV also.
When I went back a week later, he said “You have Chronic Fatigue and Immune Dysfunction Syndrome, which has activated your EBV.” He then started to explain when I said, “Stop. I don’t care about the symptoms, just give me my pills.” Spoiled American that I am, I was used to doctors prescribing medicine that made me all better. He looked at me sadly and said, “That’s the problem. There is no medicine. This is caused by a virus.”
Devastated? You bet. Over the years, I’ve learned to live with this. Did you know that people suffering from Bipolar often have CFS? Did you know that CFS goes along with Menieres, Migraines, sensitivity to weather pressure systems, IBS? Did you know that since CFS affects the immune system, it makes us vulnerable to any and every cold/flu running around out there? Did you know this virus can mimic whatever illness you have, prolonging your number of sick days? Did you know the fatigue from this illness can go on for weeks or months after being sick? And so does the uncontrolled sleeping/insomnia AND depression.

When I say CFS, I’m referring to Fibromyalgia sufferers also, since many of them experience all of these symptoms too, and it is the same virus.

TRUE OR FALSE: There is really no difference between EBV/CFS/Fibromyalgia.

ANSWER: There is definitely a difference. EBV is not the same virus, and all three experience symptoms different from each other.

TRUE OR FALSE: They have finally developed a cure for CFS/Fibromyalgia

ANSWER: Don’t believe everything you read. No, they have not.

Three weeks ago, I caught the stomach flu. I’m still in bed exhausted, suffering from a wide range of symptoms. Did you know you can hurt so bad that even holding an e-reader is impossible? I’m not after sympathy; I just want people to be aware that sufferers of EBV and CFS/Fibromyalgia aren’t making their symptoms up, that ‘running 2 miles’ is not the answer, that ‘eating more fruits and vegetables won’t help’, that ‘mind over matter’ is also not a solution, that ‘going to church every Sunday’ will not heal you, that we are not being ‘punished by God’, and especially that ‘having an affair will make you feel better’ is definitely not a solution.
I don’t care about a cure for me. My prayer is a vaccine that stops the rest of the world from being affected by these devastating but not life threatening illnesses.
Can you imagine having a good day finally, when suddenly you find yourself sick and in bed, only to hear a thunderstorm begin or your loved one saying ‘It’s snowing’ and you realize that a weather pressure system has struck, and unlike healthier people your immune system can’t deal with it.

If you are someone with a debilitating illness, you have an understanding friend in me. And I guarantee I won’t tell you to get out and run 2 miles or to have an affair or that our loving Father in Heaven is punishing you.
I will say that I’m grateful for what I have. After all, I could have a life threatening illness. And learning to cope with these viruses set me on my spiritual path which has brought me a closeness to my Father in Heaven, which I truly treasure.
By the way, this folks, is why I disappear for long periods of time, but don’t think I’m not thinking of you. Friends are what puts this smile on my face.

LHR (love, honor, and respect) and remember to support each other – PAWS for success.
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2 thoughts on “Eppstein Barr, Chronic Fatigue & Immune Dysfunction Syndrome, Fibromyalgia

  1. I had not heard of EBV before – though I had mono in highschool – miserable, horrible illness.

    I think we need to pool our conditions and split the difference and we’d be good to go. I’m sick all the time not because I have any germs to be sick from, but because my wacky immune system thinks everything is a germ and so it fights me all the time, though we’d still be in trouble on the fatigue portion, but hey, the improvement on the other two would make it worth it – your immune system might gear up and mine could gear down, ha ha!

    That is also interesting about the effects of the weather. I get quite miserable when a storm system is coming or a change is about to happen in the weather, but once the storm starts or the change finishes changing, I feel better. needless to say spring and fall – my fav times of year – are problematic, but we shove on because there’s nothing else for it 😉

    “… ‘running 2 miles’ is not the answer,” – AMEN! “..that ‘eating more fruits and vegetables won’t help’” – DITTO! “.., that ‘mind over matter’ is also not a solution, that ‘going to church every Sunday’ will not heal you, that we are not being ‘punished by God’..” – You tell ’em! “…, and especially that ‘having an affair will make you feel better’ is definitely not a solution…” WTF!?! someone said that!?!?!

  2. It was a doctor who told a friend of mine to have the affair. True story. Your symptoms sound like classic EBV. Isn’t it fun to deal with? I feel for you. Take care of yourself and rest. And thank you for your comment.

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