Treatment for chronic Epstein-Barr virus (EBV)
My son has been suffering with Epstein-Barr virus (EBV) for over a year. I have taken him to an immunologist and infectious disease doctor with no answers. He is always tired and never feels well. He has relapsed with Mono twice in the last 10 months.
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I was diagnosed with Epstein Barr Syndrome 22 years ago at the age of 54. B12 shots every week; chiropractic adjustments, and acupuncture helped me a lot. In retirement I had 11 really good years, increased physical activity, etc. Then 14 months ago the illness began steadily to take over again. Along with the two most prevalent symptoms (fatigue, muscle-joint discomfort) I have a couple different symptoms this time -- muscle spams and "Charlie horses" in legs. Yes, it seems to be a different "bird" now that I am 76. Recently I've been to a rheumatologist -- his suggestion of using COQ10 hasn't helped; he also suggested two prescriptions (Celebrex and Cymbalta); but I felt they were too expensive for me to try only to find out they don't work. Instead I am going to try acupuncture again. I very much understand the problem of "just not feeling good." I really understand your husband's situation because I was there. It caused me to take 3 short FMLA breaks from my employment; now it really interferes with things I'd like to do and even things I have to do just to take care of myself. I wish your husband well.
Jonathan: I've lived with Epstein Barr Syndrome for 22 years. Back then, when my doctor diagnosed me, we started routine B12 shots for energy; I went to a chiropractor for the muscle/joint discomfort (my MD wasn't pleased with this but also told me I would have to find what worked for me). When the discomfort became more pervasive and more painful, I had acupuncture treatments for 10-12 weeks. I think the routine B12 and chiropractic adjustments helped; but with acupuncture I saw the biggest change. After 10-12 treatments I was much more comfortable physically and had a lot more energy. When I retired (11 years ago), I started 10 years of good health, no B12, no chiropractic adjustments. Then 14 months ago EBV again took over. And it now has a good hold on me. I have been to a rheumatologist -- no help. Infectious disease specialists wouldn't even see me. Since I've moved across country, I have a new doctor whose initial response to my extreme fatigue was to treat me for depression. I know better! I've been to two specialists in the last few months. Had they had experience or success treating EBV, I wouldn't hesitate to follow their advice. But recently a rheumatologist prescribed Celebrex and Cymbalta. Together they are very expensive. And since I had good luck before with acupuncture, I'll spend the money there. I have my first acupuncture appointment on Wednesday next. Hope I've been of some help. JB
You are right: it is bullshit! I've lived with EBV for 22 years. I identify with so much of your story. Currently I'm living with a fairly severe recurrence. My GP here in Tucson wanted to treat me for depression. An infectious disease specialist wouldn't even see me. A rheumatologist suggested COQ10 -- it hasn't helped. Lysine also hasn't helped. In the past routine B12 shots and chiropractic adjustments helped a lot. I had a period when the muscle/joint discomfort turned in to full body pain; then I went for 10-12 chiropractic adjustments. They had a quick and positive (long lasting) impact. As a result, I have just found an acupuncturist here in Tucson. My first appointment is next week. If you choose to try acupuncture, be sure he/she is certified. I wish you well, Vincent. This is not an easy illness to deal with. In the 20 years since I was first diagnosed, doctors seem to know more about the disease and its relationship to other illnesses. There still have been little advances in its treatment. JB
After moving to Connecticut from Maryland in 2008 and beginning to experience lowering hormone symptoms, I also began to experience neuropathy, severe vertigo, severe weight loss, chronic joint pain, Raynauds syndrome in my fingers, my veins in my arms and legs enlarged so much that they appeared like tree roots on top of skin, I was weak, dizzy felt completely out of control. I spent the night in a hospital due to heart palpitations. When my heart rate right dropped during the night, the nurse came, took notice, administered morphine, phoned the doctor and attributed the drop to the morphine she gave me after the event. I later developed mouth sores. I went to 5 different doctors took blood tests, that included HIV, lupus, cancer screenings. I was accused of being a chronic alcoholic who was jealous of my sisters success and told to stop drinking. I cried when this judgement was made, I was too hurt to be offended. My symptoms improved after 3 years, except my white blood cell count has remained low. I did get treatment for my hormones, with hormone replacement. No more hot flashes and I haven't had fibroids since, after two surgeries.
I recently began taking collagen supplements and three months later had a massive hsv2 outbreak. I stopped having outbreaks over 20 years ago. Only have had very mild ones off and on that were never a real issue. This time was different. I stopped taking the collagen, and paid $700 for brand Valtrex after about 2 weeks, outbreaks stopped. I researched about how arginine can cause outbreaks, I was skeptical because I had never been diet sensitive before. Because I loved what the collagen did for me, physically, I do have arthritis in my thumb I didn't want to stop, so I did insane research and stumbled upon the Goop article about the medical medium, Anthony Williams. Reading that I finally had a diagnosis, CAEBV. One doctor did test me for Epstein Barr during my initial infection in 2008 and the results were off the charts. My EB VCA IGG was 3119, EB EA IGG 108, EB NA IGG 793.
I have had CAEBV for 10 years without a diagnosis. The whole body collagen supplement I took this past summer has reactivated EBV. I now have very swollen lymph glands, pins and needles. I did start taking Lauridicin to help with the herpes outbreak. Now I am looking for a specialist.
I do have a question, do mung beans cause a reaction for anyone ?
Also when I am reactivated, can I infect my husband ?
I have now been on the supplements listed above for almost one month and they have made a big difference in my energy level!
That is great news @sharyld
Are you refering to the Astra Isantis, monolauren, and lysine recommended by @magbatt? I have been on lysine for three months and started monolauren (Lauricidin brand) about a month ago. The monolauren completely knocked me down. I cut the dose way down for a couple of weeks. Yesterday I stopped it completely to allow my immune system to catch up. Did you get worse on the supplements before getting better?
Yes, that's what I have been taking-with only good results. The benefits kicked in after around 10 days and maintained until I ran out the Aatra Isatis for one week while awaiting the next shipment. I will never let that happen again as I had an energy crash and full return of symptoms yesterday! New order has arrived-and it was a definite demonstration of how helpful the supplements have been for me. Currently taking L-Lysine 1000 mg. 3 times daily, 600 mg. Monolaurin twice daily and Astra Isatis, 2 tabs 3 times daily. I take them 8 hour apart. I may increase the Monolaurin to 1800 mg. twice daily based on Dr. Jill Carnahan's recommendations-and may add Olive Leaf, 1000-1500 mg. twice daily and Cat's Claw tincture, 30-60 drops twice daily, also on her advice. I hope you experience improvements soon-this virus is no fun!
Thanks for the info @sharyld
I've been trying to find Astra Isatis. Are you usung the brand Health Concerns? So glad it is helping you!!!
I have noticed that a number of group participants use and sometimes advocate for a variety of supplements. I would like to see science-based/evidence-based treatments discussed in this EBV treatment thread. In that vein, here are two articles that might interest readers: 1) "Characterization and Treatment of Chronic Active Epstein-Barr Virus Disease: a 28 Year Experience in the United States" by Jeffrey I. Cohen etal, June 2, 2011. [Dr. Cohen has been mentioned in this thread and is Chief, Medical Virology Section and Chief, Laboratory of Infectious Diseases, National Institutes of Health.] This article paints a stark picture of EBV treatment at the time the article was published.
2) "Chronic Active Epstein-Barr Disease" by Hiroshi Kimura and Jeffrey I. Cohen, Dec 22, 2017.