Last week I was excited to see that the Dr. Oz show would be covering Epstein-Barr Virus. I thought to myself, “Finally – someone is going to explain how bad ME/CFS feels for us since they are related”. Boy, was I in for a big letdown. The whole segment on Epstein-Barr Virus lasted a very short time and they never mentioned one time about how EBV and ME/CFS are related. So I sent Dr. Oz’s show an email and I also left them a message on their Facebook page about it. I’m sure neither were read by Dr. Oz’s staff but I feel I at least got my disappointment off of my chest.
What Dr. Oz did mention about EBV was what we already know – approx. 95% of the population has been infected with the virus; EBV can cause problems in others while in most people the virus lays dormant and never causes any problems. He said that EBV can cause “extreme exhaustion” and can be responsible for mono, lymphoma, MS, and some other chronic illnesses but that was about it.
When I went on Dr. Oz’s site to check more on EBV, I saw where he had written this:
Very rarely an active EBV illness persists beyond 6 months. The fatigue is unrelenting and often confused with chronic fatigue syndrome, which thus far has no solid association with EBV. Doctors can identify an active EBV infection because the levels of EBV antibody circulating in the blood remain very high. They can also detect the virus itself when organ tissue is sampled and tested for EBV DNA. Chronic infection can affect the lungs, liver, bone marrow and eyes.
I have to disagree with him on this and I will keep sending emails to his show about it. A lot of the top CFS researchers believe that EBV is a huge factor in ME/CFS. The CFS specialists I have seen have told me that when tested, they find that the majority of ME/CFS patients have reactivated levels of EBV. EBV titers will show whether someone has been exposed to the virus and if there are any current reactivations of the virus.
I also sent an email to Adrienne Dellwo, who runs the About.com: Fibromyalgia & Chronic Fatigue blog on her thoughts. Here is a copy of our correspondence (Thanks again, Adrienne for your help!).
My email to Adrienne:
Hi Adrienne, It’s Sandy from Fighting Fatigue.org. I’m a little confused about something I read today and I wondered if maybe you could help me figure it out. I have had CFS for 20 years and I was always told by doctors and CFS specialists that reactivated titers of EBV are common in people with CFS, because my blood tests will always show this. But today on the Dr. Oz show, they did a segment on EBV and didn’t mention anything about CFS. So I checked his website to see why it wasn’t mentioned and he> says that chronic EBV is often misdiagnosed as CFS. So now I’m wondering if I’ve been misdiagnosed all along. What are your thoughts on EBV?
Hi Sandy, This is a tough one. On one hand, you could say that CFS is supposed tobe ruled out if the symptoms are attributable to something. Re-activatedEBV is something, so does that rule out a diagnosis of exclusion? Going by the letter of the diagnostic criteria, you shouldn’t be diagnosedwith CFS is there are any findings. However, the diagnostic criteria alsospecify what should be ruled out, and they don’t mention viralreactivation. Also, as we learn more about CFS, we can’t label everyfinding of abnormality a “misdiagnosis.” While I understand the position of those who say EBV reactivation is itsown entity, I have to side with the top CFS experts who believe that EBVis a major contributor to CFS in a large subgroup. Nancy Klimas, Lenny Jason, Martin Lerner and a bunch of other researchers are in this camp, and it seems to me that they’re good company to keep on this issue! Regardless of the diagnosis, if you have reactivated EBV, treating it should certainly help. How much depends on what else is going on in there, but it would at least be a step in the right direction.
As Adrienne states, regardless of whether or not EBV is related to ME/CFS, if we do show reactivated titers of the virus they need to be treated. Before I was diagnosed with ME/CFS I was diagnosed with mono. I was told to get home immediately, get in bed and stay there for however long the doctor ordered. How many of you were first diagnosed with mono, then ME/CFS?
Got so excited when I saw the piece about EBV and mono link as I had severe mono in high school and in my thirties came down with chronic fatigue and fibromyalgia. Am 60 now and am praying that someone finds an answer for this. It’s an epidemic today and deserves a lot of attention and research. Thank you to those who keep working on it….
Renee Long says
I definitely want to help all of you on here with a high EBV level. I have suffered from EBV for 13 years now. I have had excruciating pain with it and fatigue so severe that I thought I couldn’t live with. I was diagnosed with fibromyalsia and put on an antidepressant. I was totally misdiagnosed!! I don’t have fm I have the EBV. I have seen an herbal doctor that gave me herbs to reduce my titer levels. I am now on valtrex 500mg a day and it IS WORKING. I truly want to help all out there and get this message out. If you have a high ebv level you need a antiviral. It has saved my life. I want to help everyone out there that I can so anyone that has questions email me email@example.com
Adrienne Dellwo says
Nice post, Sandy! I’m glad you’re taking issue with Dr. Oz — no good evidence? Only if you’re not looking for it.
To answer your question, I had mono in high school (misdiagnosed as tonsillitis, so it went inadequately treated for months.) I eventually had my tonsils out and the acute symptoms went away. However, I had prolonged fatigue afterward, what I describe as “chronic fatigue, the symptom” as opposed to “chronic fatigue syndrome.”
While I didn’t develop ME/CFS, and in fact still don’t have it, my immune system changed distinctly. I’d never had strep before, in spite of being exposed to it regularly. Once my tonsils were out, the doctor said it would reduce my chances of getting strep or anything else throat-related. Wouldn’t you know, I started getting fairly severe cases of strep after that, and frequently had to have multiple courses of treatment to get rid of it.
Years later, I developed fibromyalgia and multiple other illnesses, including several that are neurological. Certain foods and supplements have a neurological impact on my that doctors don’t understand. Awhile back I came upon a hypothesis by a medically trained person suggesting that EBV can damage the blood brain barrier. Once that happens, your brain loses its protection and is vulnerable to damage from innumerable sources. I hope someone tests this hypothesis eventually, because it makes a lot of sense and appears to have solid evidence supporting the possibility.
I think I developed fibromyalgia instead of ME/CFS because that’s where my genetic weakness was — neurological illnesses are common in both sides of my family. Had I had the genetic makeup to get ME/CFS, I probably would have had it since high school.
High Levels of Epstein-Barr Virus Antibodies in Women Linked to Risk of Multiple Sclerosis
For immediate release: December 26, 2001
Boston, MA— Researchers from the Harvard School of Public Health have found that elevated levels of specific antibodies that fight a range of Epstein-Barr Virus (EBV) antigens are associated with the onset of multiple sclerosis (MS). The study results appear in the December 26, 2001 issue of the Journal of the American Medical Association (www.jama.com).
Blood samples from more than 62,000 women were collected between 1989 and 1999. The researchers documented 144 cases of MS including 18 cases with blood samples collected before the onset of the disease. For each woman with MS, two without MS, who were the same age were randomly chosen as controls. Compared to their controls, the women with MS had significantly higher average blood levels of antibodies for EBV antigens before the onset of the disease. The strongest association was found for antibodies for Epstein-Barr Nuclear Antigen-2 (EBNA-2). These levels increase soon after EBV infection but normally decline within a few months. In this study, elevated levels of EBNA-2 antibodies were associated with a four-fold increase in risk of MS.
Multiple sclerosis is a chronic degenerative disease of the central nervous system. The prevalence rate in the US is higher for individuals who live above the 37th parallel, accounting for 110 to 140 cases per 100,000 people, compared to 60-80 cases per 100,000 for people living below the 37th parallel. Nationwide, there are an estimated 250,000 to 350,000 people with MS.
Epstein-Barr virus (EBV), a member of the herpesvirus family, is one of the most common viruses in the world, infecting as many as 95 percent of adults in the US by age 40. Most people become infected at some point in their lives and show no symptoms. EBV infection during adolescence or early adulthood can cause infectious mononucleosis up to 50 percent of the time.
Lead author Alberto Ascherio, associate professor in the Departments of Epidemiology and Nutrition at the Harvard School of Public Health, said, “For decades it has been suspected that Multiple Sclerosis is caused by some form of infection in genetically susceptible individuals, but the microorganisms that are responsible for it have remained elusive. Our results suggest that Epstein-Barr virus may be the culprit or, at least, one of the culprits.”
Participants for the study were chosen from the Brigham and Women’s Hospital-based Nurses’ Health Study, which began in 1976 and the Nurses’ Health Study II, which started in 1989 and has tracked the health of nurses via questionnaires and blood samples to ascertain potential risk factors for chronic disease and major medical events.
The study was supported by grants from the National Institute of Neurological Diseases and Stroke and the National Cancer Institute.
For further information, please contact:
Office of Communications
Harvard School of Public Health
677 Huntington Avenue
Boston, MA 02115
Carla Charity says
Please continue your research and work to get this in the media and raise awareness. I believe there is a link also to what is called CRPS. (Complex Regional Pain Syndrome) Due to how the nerves react with CRPS, from what I understand, then I think that the “blood brain barrier” suggestion above holds true weight and may be a HUGE key to linking all of this! Please, anyone e-mail me with any relevant info! I have been in constant pain for 8 years and in some pain for way longer. I haven’t even beebn able to work…and believe me, I want to!
Keep on it! We can be the ones to help lead to a cure!
I am go happy to see some discussion on this but still in a quandry with which way to go. I signed up with the Fibromyalgia and Chronic Fatigue clinics and went to the one in Dallas. My blood work showed elevated and re-activated high levels of both cmv and ebv and was prescribed valcyte. I had both of these viruses when I was 35 and eventually I was diagnosed with fibromyalgia which I managed very well until a devastating fall several years ago and then everything just crashed in on me. My family doctor went nuts and said all the reports showed was that I had been exposed to cmv and ebv there was no evidence the viruses have become reactivated but the numbers were very, very high. I have great faith in him and so I didn’t take the valcyte which I now regret. It seems to me that if I had taken the valcyte and perhaps the numbers had come down that would be an indication.
Any feedback would be greatly appreciated!
Kelly Rathburn says
Your case is very interesting to me. I have suffered from severe pain/fatigue/and migraine for about 25 years. The best help I have received has ben from Dr Andrew Holman (a Rheumatologist in Renton, WA). He ran special MRI scans on my neck (I too have had multiple devastating falls and accidents). He found that my spinal cord has constricted space, therefore thoughout each day it is overly stimulated). The result of this in studies shows a direct correlation to a complete lack of stage three sleep (the deep restorative sleep we need to do all of the repairing in our bodies). This leads to a viscious cycle of paid, worse sleep/pain. He had specific things he tired first because my case was borderline. Some people need surgery if the area is severe. I tried a specific type of physical therapy that helped until I began to have numbness and tingling from a bone spur in my neck pressing on a nerve. So, he prescribed three things for me every single night to shut down my central nervous system, allowing me to sleep deeply: 100 mg Klonopin (a mild sedative type medication). Soma, a muscle relaxer for the spasms, and Tramadol (a non-narcotic pain reliever). These are the only things that have allowed me to keep working – literally!
Just this past week I was diagnosed by a Naturopthic doctor with extrememly high levels of the EBV antibodies (18 times the highest level the human body can tolerate). So she has me taking Monolaurin.
It appears I have both types of Fibromyalgia, one caused by trauma to the cervical spine (neck), the other triggered by virus. I almost died as a child with strep/scarlet fever and this is the first doctor to even ask a question about it.
If I were you, I would check out Dr Holman’s website. He is now in fulltime research in Fibromyalgia. Perhaps you could find a doctor in your area to deal with the sleep issue. More and more doctors are realizing the correlation.
I wish you the best, and believe me, I feel your pain!