Treatment for chronic Epstein-Barr virus (EBV)

I am this high and my VCA IGG is over 750!
did you find any answers?

Hi,

What brand of Monolaurin do you use?

Lauracidin

Hi @cummings3! I too know how frustrating it is. I had an infectious disease doctor laugh in my face and tell me to stop going to doctors because she believes there is no such thing as chronic EBV. My PCP recently gave me this protocol (below are her direct notes), which she says several patients have had great success with. I haven't started it yet due to other GI issues, but I'm planning to try soon. It's all natural supplements, so I'm comfortable sharing, but you may want to check with your doctor and make sure no conflicts with anything else your son might be taking.

Chronic Epstein Barr Virus Infection:
- This is a reactivation of an old EBV viral infection and is not contagious.
- Discussed starting on sambucus or sambucol 2 tsp 3x day for a couple of months or one of the lozenges 3x/day, then can go down to once daily for one more month which has been shown to help shorten viral duration and decrease severity of symptoms in certain viral infections including EBV.

- Vitamin C is a cofactor in the viral immune system - can take as much as 900-1000 mg once-twice daily.

- Quercetin has studies showing its ability to help the body fight the early antigen of the epstein barr virus. Dose = 1000-1200 mg daily

- N-Acetyl Cystine (NAC) is an antioxidant that can help with nerve function and memory. Dose : 600 mg once daily

NOTE: There is a combination product called Di-Hist or Nu-Hist that has Quercetin, NAC and Vitamin C in it which is convenient but slightly more expensive than putting together own ingredients. Can be gotten from Apothecary shop or online.

- To help with fatigue, discussed using 5 gm (5,000 mg) ribose 3 a day for 3 weeks, then 5 gm twice a day for 6 weeks to see the full clinical effect. We have patients get a 280 gm container of ribose (Corvalen from Douglas labs) as a therapeutic trial. http://www.endfatigue.com/tools-support/D-ribose.html - can order on line from this website (and the endfatigue.com has a good write up of some of the research) or can go to amazon and put in Corvalen or D-ribose by Superior Fuel.

- Discussed may take up to 3 months (or longer) for full effect. Once feeling better, slowly stop the medications (stop the quercetin first, then NAC, then vitamin C, then the sambucol- as an example). Would not stop the supplements till has been feeling well for 4 weeks.

@kanaazpereira, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson

my husband came down with EBV three years ago this month. Since then he has been really tired, no energy and most of the time just don't feel good. He says his doesn't know what it is, he just doesn't feel good. Jim will sit down to watch tv or to read and within 20 minutes he is sound to sleep, this also happens every Sunday during church. He has been to over 12 different doctors including the infectious disease doctor which could only say what Jim didn't have but couldn't explain why he feels bad most of the time and is so fatigued.

Hi @mblack I am so sorry to hear of your illness with EBV. I would recommend you see an Intregrative Medical practice. They seem to know more and are more willing to help you treat this illness. I have been battling this virus for over 30 years. I was a young mother with two sons, a 3 yr. old and a 10 yr. at the time, and did not have time to be paralyzed in the hospital for 3 months with Guillian-Barre' Syndrome, brought on by the Epstein Barr Virus. It was a few years later that I discovered the Reactivation of EBV. For some reason they were unsure if the EBV caused the Guillian Barre' when I was in Duke University Hospital, I think they were scratching their heads! So a few years later when I was very debilitated and worried the GBS was coming back. I insisted the Dr. run the test and that's when I discovered the culprit. I have had much experience with this virus and I can say the only thing that I've had success with is a high nutrient clean diet along with supplementation of natural supplements. I have just started an anti-viral so the jury is still out on that result.

My first success was by utilizing the protocol from a book by Dr. Jesse Stoff, titled Chronic Fatigue Syndrome/AKA Epstein Barr Virus. I found it in a book store after my infectious disease specialist said he could not help me. Basically I was tired of being tired and decided I would learn as much as I could on my own about the disease. His protocol is specific to diet and supplements and I followed them religiously. The supplements were expensive but it was worth it, I was back on my feet in 3 months, after being debilitated for 9 months. I believe this book is still available on Amazon.

Unfortunately, I let me guard down and thought I was cured. You are NEVER cured from this virus, it may go dormant and your titers may go down but it will come back if you don't take care of yourself. I got complacent, stopped taking so many supplements, did not watch my diet, or get the rest I needed. Our family was under tremendous stress and my immune system could not handle it. To make a long story short, I started having symptoms of joint pain, fatigue, persistent illness, again in late 2015, and test results showed the EBV was back again. I thought surely, it's been over 30 years they must have figured something out by now that can treat this virus!! When I started researching again all I found was the anti-virals, supplements and nutrition. I did find that an Intregrative medical practice is much better equipped to help than a regular GP, or an Infectious Disease Specialist. I changed my Dr. immediately. I am being tested regularly, to know if we are making progress, and I have seen progress with lowering my titers, but then I caught a cold and they went right back up again. So now I am on an anti-viral along with the following. Vit-C, Turmeric Curcumin, Magnesium Complex, Methyl B Complex, Olivir 15, Oil of Oregano, CoQ10, Zinc, Monolaurin Supplement, L-Glutamine, Move Free Joint Health, Multi-vitamin, Calcium, Omega. All to give me energy and to build up my immune system again. I am now 66 so it is a little bit harder I think. Yes it is a pain taking all of these supplements everyday, but it is keeping me mobile and hopefully will build my immune system up enough to put this monster back in a dormant state.

Everyone's system is different, and everyone will not respond the same to a certain regimen. I was hoping there was a magic pill for this disease by now, but that is not to be. I would highly recommend getting in with an Integrative Medical Practice, so you will have an ally in this fight. They will be able to recommend and prescribe what you need and can keep watch on your liver function on a regular basis among other things. As we all know everything we put in our mouth is filtered through our Liver and EBV effects our Liver so that does need to be monitored.

For all of you out there fighting this disease, I hope my story is not a downer. The good news is, if we take proper care of ourselves, with nutrition, supplements (because we seem to need more than most folks), and proper rest....you CAN get the EBV Virus to go dormant again. BUT the bad news is you cannot let your guard down, if you have Chronic Epstein Barr Virus. It is always lurking in the background waiting to activate if your immune system is not optimal. So be good to yourself, pamper yourself and don't feel guilty about it. It's mandatory for the battle you are in for your health and survival.

Thanks for listening to my story and I hope it helps.
Blessings,
@kkathysan

Thank you so much for sharing. Did those antivirals you tried ever work? My son is 10 and was just diagnosed. It is something I am greatly struggling with wrapping my head around all the sick days with school and the constantly colds and just getting better only to get sick again and run a fever then be better ish after a days rest then to return to school and then be exhausted. The problem is my child also has ADHD so I can only tell if he’s truly exhausted if he’s showing signs bc then he’s very very ran down.

Hi, I’m coming to this group for help because I’ve reached a dead end. 3 years ago I found out about my Epstein Barr diagnosis. I have since been labeled as chronic. I have fever, headaches, rashes, extreme sore throats, and debilitating fatigue 3-4 days a WEEK. My fevers range from 100-103.5 degrees. It has been 3 years and my EBV IGG levels are still over 500. There has only been a 4 point decrease in my numbers over this time period. I have cut out all dairy, red meats, peanuts, white flours, white sugars, corn, potatoes, and farm raised fish which has substantially helped with my headaches. I have seen 2 different infectious disease specialists who seem to know less about my disease than I do. Within the last 8 months, I have regressed. I now have stomach ulcers, GI issues, and impaired hearing related to CEBV. I take B12, multivitamins, and probiotics. I just need sim help.