I am learning all I can about EBV. Thinking back I have had several..I guess you call them flares. Anyway from what I understand there is an incubation period with no symptoms but you are contagious. I have a couple of people in my life who have very weak immune systems and the doctor told me I shouldn't be around them..especially now since it is active. How do you know when you can be around people?
Hi @chickie001 That's a good question and a grey area. I would follow what your doc says since he/she knows your unique situation. Over 90 percent of humans have been exposed to EBV and therefore have antibodies to protect them if exposed again. We never get rid of the virus though. It basically sleeps in our body and then can be awakened when our immune systems are down. This can be caused by stress, poor diet, environment stressors, genetic weaknesses. From what I have learned, there is no one means to putting it into remission. Many have been helped by cleaning up their diet, supplements such as L-lysine, Lauricidin and others, Valtrex, tackling stress, taking up yoga, meditation. A good resource is Kasia Kines, PhD. She just wrote a book on EBV called The Epstein Barr Solution. Her website is ebvhelp.com. ….Sorry I don't have a straightforward answer to your question about contagiousness! The main thing is to focus on getting well– taking care of yourself. Doing your research and doing things that you think will help you.
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Thank you. I ordered the book. From everything I am reading the contagious thing really isn't clear cut. I have a 2 year old granddaughter who was born with a rare form of dwarfism..RCDP…she has lived linger than anticipated and is very fragile. I would never jeopardize her health….makes me sad that I will probably never get to hold her again. Thank you again.
I recently tested with very high levels of EBV, 24 years after suffering from Mono at 16. I was dealing with chronic sinusitis and was sick at least monthly, every bug got me and turned into a sinus infection. Saw a physician who prescribed Acyclovir (Zovirax), often prescribed for Herpes. I take it 1X daily if I'm feeling well and increase up to 3X daily (dosage on the bottle) if I'm not feeling well. It seems to help with getting sick and I've been sinus infection free for almost 6 months. I would still say I need lots of rest (not easy with a 4 yo) but definitely have some improved quality of life with taking this prescription. Would love to hear more about natural remedies as well. Hoping you have made some progress and are feeling better.
Hi @anshann44 . I'm sorry to hear you are dealing with EBV. I'm glad though that the Zovirax has kept you from getting sick as often. You mentioned you wanted to hear more about natural remedies. I currently am on Vital Plan Restore Kit by Dr. Rawls (rawlsmd.com). I have been on it for over 2 months and have seen some improvements. It is a diet/supplement/lifestyle protocol. His team is very supportive. He is an MD who became ill and lost his career in his mid-forties due to chronic Lyme, fibromyalgia, CFS, and even reactivated EBV. According to him, basically all those things can have the same trigger — a weakened immune system brought on by poor diet, stress, environmental toxins, and other things. You can check out his website otherwise this message is going to be really long! You can also check out http://www.ebvhelp.com. It is a website by Kasia Kines, PhD who just wrote THE book on EBV called The Epstein-Barr Solution. Also Rodger Murphree, DC (yourfibrodoctor.com), and Evan Hirsch, MD (fixyourfatigue.org) are good resources. I learned from being a part of some EBV Facebook groups that many say they have improved by taking L-lysine and Lauricidin (monolauren). Lifestyle changes are important as well. Learning to say no, resting when your body is telling you to (or ideally before your body tells you!). I know, right??!! I'm sure that is difficult with a four year old. Be your own best advocate, don't give up, do the research, decide where would be best for you to start and then be persistent and patient. Recovery is not a straight line. There will be many valleys on the journey. I have learned that first hand. Let us know how you are doing!
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
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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 ?
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!
@mrmie
Fibromyalgia is a group of symptoms. And instead of the doctors trying to get down to the root cause, they blame all of your symptoms on fibromyalgia which is just more symptoms. There can be multiple causes to these mystery illnesses such as fibro and chronic fatigue syndrome. Reactivated EBV is what I am dealing with. I recommend learning all you can on your own and follow up with your doctors as instructed. I recently watched in online summit hosted by Dr Rodger Murphree. He treats fibro patients around the world and has a lot of info on his website http://www.yourfibrodoctor.com. William Rawls,MD is another good one. I started his protocol 2 months ago and am excited to have experienced improvements. http://www.rawlsmd.com. It is completely normal to feel scared. Know that there are others struggling with this too and we care. I wish you wellness soon and peace and comfort to your granddaughter and family. Keep us posted on how you are doing, if you have questions, or simply need to vent.