Hi all,
I was recently very ill (102 degree fever for 3 days, swollen glands, extreme sore throat, extreme body ache, earaches, nausea, etc). I got blood work done at the doctors and when it came back, I was told I have chronic EBV. My mono tests came back negative and my kidney and liver function tests came back fine. I was told all this over the phone so I did not really ask any questions. So basically I just wanted to know, what does all this mean? I can't seem to find anything online about EBV that doesn't just describe it as mono. Can someone explain to me what this is? And what to expect since I will always have this? Thank you. What I also forgot to ask was, am I contagious? Will I always be? If I am but not always, how long of a period am I contagious for? Hi,
I am a doctor..
Hope this would help...
Discovered in 1964 by M. A. Epstein, Y. M. Barr, and B. G. Achong, the Epstein-Barr Virus (EBV) is part of the Herpes family of viruses and is said to be one of the most prevalent pathogens in human beings. It is estimated that around 75-90% of the populace is infected, completely unaware due to varying intensities of symptoms. Typically the virus is benign, though it often causes the common ailment Mononucleosis. It is also assumed to be the direct cause of several different diseases such as Hepatitis, Stevens Johnson Syndrome, and Burkitt鈥檚 Lymphoma (see section titled 鈥淩elated Conditions鈥?for more information). In recent years, some doctors have even ascribed the virus to be one of the main causes of Chronic Fatigue Syndrome (CFS). However, it is most elusive and unique in its association with another disease, which has come to be known as 鈥淐hronic Epstein-Barr Virus Infection鈥?or 鈥淐hronic Epstein-Barr Virus Disease鈥?(CEBV). Interestingly enough, the disease was only recently recognized and is even disregarded by some doctors as pure fiction, in spite of the large amount of sufferers who have been coming forward. To them, CEBV is very real, very destructive, and potentially life threatening. It is the goal of this foundation to inform the public about the dangers of this infectious disease with the hope that eventually research into a cure or treatment alternatives can be funded.
One of the reasons, if not the main reason why CEBV is so difficult to diagnose and why it is often misdiagnosed is due to the vast differences in symptoms. Symptoms often differ from person to person. Where one sufferer may only experience fatigue, another may experience a variety of symptoms of varying intensity. Some unfortunate victims have been mislabeled with bipolar disorder, major depressive disorder, and even hypochondria. The symptoms listed below are in no way related exclusively to CEBV. In fact, you may simply have another condition. The symptoms are simply meant to assess the POSSIBILITY of being infected, as only a blood test can accurately gauge if this is the case. What we have listed below are those symptoms typical to an individual suffering from CEBV. If you yourself have the disease, but have symptoms not listed below, please contact us to let us know. Symptoms are listed in alphabetical order and in no way entail any suggestion of importance. Where found necessary, some of the symptoms have been commented on due to the fact that they often have certain features specific to the disease. Please note that different conditions caused by CEBV have different symptoms that go along with them, such as depression, so assume that even though it is caused by the virus, the symptoms normally found as they appear in individuals who are not infected are generally the same.
Aggression (Usually very mild)
Alice in Wonderland Syndrome
Allergies (Heightened, or previously nonexistent)
Anxiety (Mild to Severe)
鈥淏rain Fog鈥?(Feels as though thoughts are dulled)
Brain 鈥淪urges鈥?(Similar to a headache, feels like a 鈥渟hock鈥?
Burning or Tingling Extremities (Mild to Severe)
Burning Tongue (Usually very mild)
Cold Sweats
Confusion (Well-known objects seem alien, etc.)
Decreased Alertness
Decreased Libido
Decreased Motor Skills (Usually very mild)
Decreased or Low Stress Tolerance
Depersonalization
Depression (sometimes cognitive, controlled)
Derealization
Difficulty Concentrating (Reading, writing, speaking, etc.)
Difficulty Reasoning (Mathematics, decision making, etc.)
Difficulty Urinating (Dribbling, bladder problems)
Discomfort After Sexual Activity (Usually a sore sensation)
Discomfort After Urinating (Feels similar to a UTI)
Dry Cough (Very rarely with discharge)
Earaches (Mild to Severe)
Excessive Worry
Fatigue (Usually very severe)
Fever (Usually mild, fluctuates from low to high)
Food Sensitivities (Heightened, or previously nonexistent)
Headaches (Mild to Severe)
Hostility (Usually very mild, only in thought, not action)
Hypersomnia
Impulsive Feelings (Normally never acted upon, causes anxiety)
Increased Nasal Buildup
Increased Nasal Discharge
Insomnia
Irritability
Irrational Thoughts (Fear of 鈥済oing crazy,鈥?etc.)
Leukoplakia (Usually mild)
Loss of Interest in Activities (Hobbies, sex, friends, etc.)
Malaise (Feeling that 鈥渟omething is wrong,鈥?鈥淚鈥檓 ill,鈥?etc.)
Mental Symptoms alleviated by eating or drinking
Migraines
Mild Delusions (grandeur, religious, etc.)
Mood Swings (Mild to Severe)
Mouth Sores (Mild to Severe, sometimes triggered by food)
Night Sweats
Obsessive Compulsive Disorder (similar symptoms, usually mild)
Obsessive Thinking (Focusing more than usual on fears, etc.)
Paranoia (Usually mild)
Persistent High Fever (Sometimes as high as 102F)
Ringing in the Ears (Mild to Severe)
Sensitivity to Light (Especially bright light)
Shingles (Mild to Severe)
Sinus Problems (nonexistent or unusually heightened)
Skin Rashes (Mild to Severe, varying types)
Sore Joints (Mild to Severe, normally short duration)
Sore Muscles (Mild to Severe, sometimes restricting movement)
Sore Throat (Normally mild, may be severe, can last for days)
Swollen Lymph Nodes (Armpits, Neck, and/or Groin)
Swollen Spleen (Can rupture, but this is very rare)
Tremors (Mild to Severe, often intermittent)
Treatment
Treatment for CEBV is, unfortunately, not the definition many sufferers would prefer or may be hoping to find. Currently there is no known cure for the virus, nor is there any method for protecting against infection. Whereas some medical professionals seems to believe that transmission is mainly through saliva, many CEBV victims will say there is almost no chance they were infected in this way. Certainly it is a possibility, as with any other form of disease, but many are still uncertain how they may have acquired the virus in the first place. At any rate, should you find yourself positive for CEBV, there are several things that can be done. Many take time in order to work properly, but for now it is much better than waiting it out.
1. Help from a trained professional.
This need not be a doctor, though it certainly will start here for most sufferers. After being tested, this is often the first means by which you may learn of ways to help you through the disease. Some doctors, however, are much more knowledgeable about CEBV than others. In fact, some still believe it does not even exist. If you find yourself at odds with your PCP (primary care physician), do not be afraid to seek help elsewhere, whether it be a dietitian or another doctor altogether.
2. Medication.
This will most likely follow from the first suggestion. Various medications can be used to treat the symptoms caused by CEBV. As mentioned, there is currently no way to combat the virus itself. Only the symptoms can be dealt with. Many sufferers find it necessary to take anti-depressants, anti-anxiety medications, or in some cases even steroids. The latter should only be used if swelling caused by the virus becomes too severe or hinders certain functions, such as urination or eating. Of course nothing of this nature can be purchased over the counter, they can only be prescribed. If you are thinking of taking any type of medication, talk with your doctor and learn about any possible side effects, complications, or interactions with other medications.
3. Dietary changes.
This is often one of the most important factors in the treatment plan for anyone suffering from CEBV. Altering your diet will be core to feeling better, even if it is only slightly better. On this website you can find a variety of information on what sorts of changes need to be made and also several diet plans that you may find to fit your needs. If you are looking for an approach that takes a more complete perspective of the matter, alter your diet.
4. Plenty of rest.
This is something that many sufferers may not have the liberty of performing. If you find the time, rest as much as possible. Your immune system works at its greatest while you sleep. Plus, more often than not, you may be experiencing extreme fatigue to begin with. Do not push yourself, rest whenever you can. This also includes mental rest. You may feel physically up to a task, but not mentally. Do not force yourself into anything that feels uncertain. Rest.
5. Exercise.
This varies from person to person. In fact, some sufferers find themselves unable to do more than walk a few miles. Whatever it may be, try it and if it works, continue to do it. You must remain active. Though rest is necessary, activity is as well to balance your body and achieve a more efficient state of immune system function. However, be careful. Splenetic rupture is a possibility with some victims of CEBV. Therefore, it is safest to exercise in moderation, no matter how good you are feeling. If you previously weight lifted or performed any activities that demand quite a deal of energy, stop doing them altogether until you find yourself in better physical spirits. Many victims of CEBV have found routines that include yoga or qigong to very beneficial to treatment.
6. Family support.
Some sufferers will find that, unfortunate though it may be, this is the time when they discover who is truly a friend and who is truly not. Some even have difficulty explaining the situation to family members, let alone to coworkers or acquaintances. Wherever you can find support, take it. Talk your feelings and frustrations out with whoever will listen. It is best to be open with this disease instead of pretending things are much better than they are. Talking about your sensations, especially mental sensations, will help the coping process as your body heals.
The prevalence of CEBV is currently under research, but it can be looked at as nothing short of an epidemic. It is estimated that between 70 and 95% of the population is infected with the Epstein-Barr virus, most victims completely unaware, left wondering if something is wrong mentally or if they simply cannot take the strain of daily life. This is most unfortunate, because oftentimes sufferers of CEBV never even know they have are infected in the first place. Some are even misdiagnosed with bipolar disorder, manic-depressive disorder, general anxiety disorder, major depressive disorder, schizoid personality disorder, borderline personality disorder, mild psychosis, mild schizophrenia, or even hypochondria. Considering this alone, it seems that something needs to be done. The following is meant to give the reader an idea of the plague that is CEBV and what it entails to the health of the human species.
1. Worldwide concerns.
The virus was first discovered in the 60s, as mentioned in another section of this website. At first it was thought to be merely the culprit behind Mononucleosis, but recently it has been connected with everything from Chronic Fatigue Syndrome (CFS) to certain types of cancers. Interestingly enough, the virus functions DIFFERENTLY across the world. In America it is currently associated with Mono, in Africa Bukitt鈥檚 lymphoma, and in Russia the Spring/Summer virus. Typically, a virus will function roughly the same in one place as it does elsewhere, not differently. However, it is being discovered that EBV does not function equally the same anywhere, from country to country, and even from person to person. Why it causes one type of disease in one area and another type in another area is unknown. Even more confusing is why it causes one set of symptoms in one person, and an entirely different set in another.
2. Hidden disaster.
As mentioned, a large amount of the population is infected with EBV without even realizing it or even considering it. Since the virus is still relatively new as far as research is concerned, and since some doctors even refuse to admit it exists, it is uncertain exactly how many lives have been ruined by CEBV. Who can know how many marriages have dissolved due to the stress of uneducated assumptions, or how many people have been torn apart mentally believing that something was biologically wrong as opposed to a physical culprit? Until the public, especially the medical community, is made more aware of the potential danger this virus poses to human existence, it will not receive the attention it requires in order to arrive at better treatment methods or even a cure. Who knows how many people reading this information will find for the first time hope in understanding exactly what is wrong?
3. Infection based on age and gender.
Currently, little research exists on this matter. It is assumed that the virus is normally easy for the immune system to combat the younger the sufferer鈥檚 age, similar in a way to the Varicella-Voster Virus (Chicken Pox). However, there are numerous instances where this is not the case. It may be generally assumed aside from this, that the older one is infected, the worse the symptoms and the longer the duration of the disease. Gender seems to have little to do with infection, though women do seem to be more resistant to infection.
4. Infection based on prior disease.
It has been assumed thus far that if one is infected with Mononucleosis early in life, antibodies to defend against CEBV will thus exist. However, many sufferers have apparently been infected with Mono prior to acquiring the disease. Most, in fact, are infected with Mono initially. It has been found that weaker immune systems can greatly effect the duration of infection and the initial spreading of the virus. However, yet again, there are numerous victims that prove this is not always the case. In fact, they are so numerous that it is most likely not the case at all.
EBV seems to be only contagious while you have the mono and it's active. Then it lies dormant and isn't contagious while it's dormant.
If you want more info, feel free to write to me ... its chronic mono, my sis has it Hi I have chronic epstein barr,I hate it but have learned to accept it,I figure there are worse things out there than this.But first of all are you sure it's chronic as in forever?because everybody will catch this virus sometime in their life,the virus will always stay in your system,that's why it's easily passed on,but majority of people the symptoms go away,I would keep having it checked to see if it's consistent.For chronic EBV though The levels of intensity will vary.Especially when you catch a cold or flu,Sometimes you will have a severe sore throat,headaches,dizziness and possibly chronic fatigue,the fatigue is the worst for me, and i always have a little annoying dull pain in my throat. You will adjust to these changes in your body though and learn to ignore them, and realize it's not so bad compared to many other worse diseases people have to deal with, like i did,Good luck with it. I just want to add that it COULD be hepatitis c and not actual EBV....
I know they check your liver and it all looked well as far as enzymes (alt and ast) BUT
HCV doesn't always affect the enzymes.
I tell everyone who tests for higher titers for EBV to get a test for HCV antibodies....because, sometimes ebv and hcv run together...reason being is because everyone has ebv and it might be possible to have hcv that is actually causing your monocytes to effect your titer in an EBV test.
Just a heads up.....hcv is chronic more often than that of just EBV alone.
HCV antibody test, please.
You might thank me one day.
Oh, and if the dude above me was a doctor he'd of listed exactly what I just spoke to you about. instead it was a copy and paste. (plagiarism) |
