This is a paper titled "An Evaluation of Drug Therapy versus Dietary and Lifestyle Changes in the Treatment of Chronic Epstein-Barr Virus (CEBV)". It is a personal account of the struggle with CEBV and how drug therapy and lifestyle changes can affect an individual.
An Evaluation of
Drug Therapy versus Dietary and Lifestyle Changes
in the Treatment of
Chronic Epstein-Barr Virus (CEBV)
November 22, 2005
By the age of 40, there is about a 95% chance that a person has the Epstein-Barr virus (EBV). In most people, this virus does not appear to cause any complications. For some, especially those who contract it as a teenager or young adult, EBV causes mononucleosis. EBV has been found to cause other diseases such as some cancers, multiple sclerosis, lupus, and others. In a small subset of patients, EBV can manifest itself with prolonged symptoms similar to those of chronic fatigue syndrome. A diagnosis of chronic Epstein-Barr virus (CEBV) is usually made once symptoms persist for six months or more. It is this form of the virus that I contracted about five to six years ago that has significantly changed the course of my life.
Chronic Epstein-Barr virus produces symptoms such as immobilizing fatigue, swollen, painful lymph glands, constant, sometimes unspecific pain possible in almost any part of the body, heart palpitations and occasionally irregular heart patterns, persistent nausea, lightheadedness with the possibility of fainting, inability to think clearly or concentrate, pelvic pain, headaches and migraines, depression, fever and chills, hypersomnia and insomnia, sensitivity to light, swollen spleen and/or liver, tremors, and many others. The symptoms tend to be different for everyone, and there are others not even listed here. However, these are the main symptoms that primarily affected me. Due to the wide range of symptoms, diagnosing EBV and eventually CEBV is not easy, simply due to the fact that most physicians do not readily think of EBV as the cause and tend to skip the blood work necessary for its detection. Additionally, there is the compounding problem of the fact that some physicians do not believe that EBV is the root of the problem for the symptoms.
In my personal situation, it took many months before a doctor finally thought to run the EBV titers test. The test revealed that I had an extremely high level of active infection. My physicians then continued to send me to specialists and diagnostic centers for more tests and evaluations. During this time, the only advice I was given was to take it easy and get plenty of bed rest. I was also given various prescriptions to help combat the symptoms. Some of these prescriptions included pain relievers, muscle relaxants, anti-inflammatory drugs, and sleep inducers. In addition to these, many over the counter medications were also used. Throughout all of my doctor visits including ones with specialists, not one physician tried to analyze my lifestyle and specifically my diet in an effort to improve my immune system or alleviate the debilitating symptoms I was experiencing. Rather, the constant visits to medical professionals with no positive results or effective treatments or therapies added to the depression and seemed to compound the other problems. Shortly after my diagnosis was changed to that of Chronic EBV, I decided to discontinue the visits to specialists since they were causing more problems than they solved. Throughout this time and for a long time after, I continued to take the various medications to combat the symptoms, yet my life was still significantly hindered. I went though periods of time where I was bedridden and others where I simply could not function on my own abilities. My life, my job, my classes, my marriage, and my family relations were all severely affected.
After my cessation of specialist visits, I made minor changes in my diet such as replace soft drinks with water, lessen my intake of sugar-filled foods, and try to eat more meals at home rather than take-out, which my husband had to prepare due to my lack of strength. This made small positive changes in my health, allowing me to resume minimal normal functions. I was able to complete a regular day of work and/or school, yet my time before and after these activities were spent recovering. Then, I went through phases where either my mornings were horrible or my evenings were. At one point, some of the more major symptoms such as the fatigue and brain fog were lessened as the virus seemed to go into a more dormant type of state. I recurred a few times after this, however. A couple of times in particular seemed to be triggered by the use of antibiotics.
In the summer of 2003, at the beginning of another recurrence, I was blessed with the opportunity to attend a meeting on nutrition education and specifically how proper nutrition relates to disease prevention. A host of the meeting happened to be a fellow EBV sufferer. This knowledge was the beginning of a positive lifestyle change for me. After introducing whole food nutrition into my system by taking capsules containing fruits and vegetable powders (Juice Plus), I noticed an unbelievable improvement in my health. My ability to function had improved so much from this change alone that I had the energy to then make other changes in my diet. Some key points of modification were to decrease sugar, increase omega-3 fatty acids, replace most dairy with soy products, increase servings of fruits and vegetables, include 35g or more of fiber per day, drink 50 ounces or more of water per day, and a few other areas. In addition to this, I also made other lifestyle changes such as ensuring adequate sleep and including mild exercise. Even more recently, further benefits have been noticed by adding air purifiers to my environment.
At the beginning of my diagnosis with EBV, I began to frantically search for information on this new and somewhat scary revelation of what was affecting my health. Like most EBV sufferers, I had the initial relief of finally being able to put a name to my suffering. It truly was not all in my head as some had suggested along the way. In my quest for information, I came across others who had been experiencing similar feelings with their own health diagnosis and problems. However, I quickly learned that there was very limited information on this virus and even less information on the chronic form of the condition. What information did exist seemed either extremely outdated or more geared towards the virus’s causal affects of mononucleosis and cancer. The majority of the books were written in the 1980s and even some prior to that. To date, I’ve been able to identify about fourteen books primarily focused on EBV. Unfortunately, local libraries do not carry any of these. A new book, Epstein-Barr Virus edited by Erle S. Robertson geared towards the medical community and published in September of this year (2005), looks promising as it claims to contain a comprehensive covering of all current research and information on the Epstein-Barr virus. Another book, Epstein-Barr Virus: Diagnosis, Therapy, and Management by Alex C. Tselis, Hal B. Jenson (Editor), and Alex Tselis (Editor), is due to be published in March of 2006 and appears as though it will be an amazing wealth of knowledge geared in the area of treatment for the patient.
Due to a lack of readily available book-based information, the internet is the primary means of written knowledge on EBV. The CDC’s webpage on EBV located at http://www.cdc.gov/ncidod/diseases/ebv.htm
is probably the most often referenced website. Like all the other resources, this website states what is widely known in that there is no approved treatment or anti-viral available for EBV or chronic EBV. Earlier this year, I was contacted by an agency in Brussels, Belgium claiming to have developed an anti-viral that eliminates all traces of EBV in the human body. However, this is still pending approval by the FDA. Since there is no anti-viral currently available, the primary focus of the medical community has been to treat the symptoms of chronic Epstein-Barr virus through prescription and over the counter medications. This is reiterated in other websites such as http://www.well-net.com/prevent/cebv1.html
which support the same mode of treatment that my physicians used with me. Due to the lack of substantial information on chronic Epstein-Barr virus and sensing an overwhelming need for support for patients, I began the Chronic Epstein-Barr Virus website located at http://www.cebv.org
in order to share the research I have found and to also give those affected by CEBV a voice to be heard and a means of support. Many CEBV patients have posted regarding the medications they have taken and their results. This has provided invaluable information for the CEBV community as there is no specific, documented information on the affects of various medications related to CEBV.
There are a couple of themes that seem to occur for those utilizing traditional medications to ease the symptoms of CEBV. For some, the medication, whether it be a pain reliever, muscle relaxing agent, anti-inflammatory, sleep inducer, or other drug, improves the symptom that was its target. At first, this seems to be of great help to the patient but after a while the other symptoms tend to overpower the lack of the previous one. For other patients, the side effects of the medication magnifies existing symptoms or may even add new ones to the current array of complications a patient may already be enduring. As a result, a majority of patients do not remain on their medications for an extended period of time and end up trying others in hopes for better affects.
An overwhelming number of patients have found positive results through dietary changes. Interestingly enough, these patient’s experiences were very similar to my own. After visits with physicians and the use of medications, they too began to explore a higher level of health through dietary and lifestyle changes. While each person’s specific diet may differ, the key components tend to follow the areas previously mentioned. Though my research in the area of nutrition was not specific to EBV itself due to a lack of resources in this area, what I found seems to support the mechanism behind the health improvements noticed. By providing the body with the nutritional building blocks found in whole food nutrition and other dietary improvements, the body’s own immune system has the tools necessary to combat illness on its own. A strong immune system is the best defense against disease. This information is supported by common nutrition lecturers, authors, and doctors such as Richard E. DuBois, M.D., Titus Duncan, M.D., Delia Garcia, M.D., Frank K. Eggleston, D.D.S., Doug Odom, M.D., Mitra Ray, Ph.D., William Sears, M.D., Susan Silberstein, Ph.D., Gerald Tulzer, M.D., and many others.
It appears that EBV and its symptoms have weakened the patient’s immune system so much that a poor diet compounds the problem while a proper diet dramatically improves the patient’s health. Drug therapy, on the other hand, has an entirely different focus. Medications aim at a particular symptom rather than targeting entire health improvement. This is not to say that prescriptions and over the counter medications should never be utilized in the treatment of CEBV. There are times when drugs work for a patient and are necessary to provide relief, especially when symptoms have made it impossible for a patient to function. Since it is always wise to eat a proper diet and live a healthy lifestyle, then it is my personal opinion that CEBV sufferers should always aim to make this their highest priority and then only supplement their routine with drug therapy when absolutely necessary.
My research on this topic has obviously ranged over a period of time and has directly impacted my life. I am very passionate about CEBV research and treatment as well as providing support and information for other CEBV sufferers. My recent education on pharmacology has significantly improved my understanding on the mechanisms of the various drugs used in treating CEBV symptoms. I believe that the greatest improvement in my level of understanding has been that there are so many different types of drugs that could be used to accomplish a single goal, such as pain relief or depression treatment. This provides multiple options for the CEBV patient in that if one drug does not work, another one may. In depression medications alone, there are options of tricyclic antidepressants, selective serotonin reuptake inhibitors, atypical antidepressants, and monoamine oxidase inhibitors. This is just a single example of how one goal, depression treatment, has various drug therapies that could be utilized.
The greatest result of my research into this topic has been that there is not enough information on EBV and even less on chronic EBV. It is encouraging that a book was recently published and another will be soon. Hopefully, these will open the door to more patient-friendly resources. Until then, the CEBV community will continue to rely on the experiences and support of each other as they balance the diet versus drug therapy methods of treating this disease.
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