Treatment for chronic Epstein-Barr virus (EBV)

Posted by cummings3 @cummings3, Jan 23, 2017

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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lindahel | @lindahel | Feb 4, 2023

In reply to @jenchaney727 "Hi @cummings3! I too know how frustrating it is. I had an infectious disease doctor laugh..." + (show)

@jenchaney727

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

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Hi can I ask you if the supplements you stated here helped you with symptoms and helping with getting rid of EBV ? I have been struggling for one a hald year and its very hard to live normal life! Thank you

lindy1965 | @lindy1965 | Feb 5, 2023

In reply to @lesd70 "Lysine has been working great for me, take it on a full stomach and I take..." + (show)

Thanks so much! I was told to take on empty stomach and then no food for a half hour after :(.
How long have you been struggling with EVB? And how long before you saw a difference with the Lysine? Any other tips, suggestions, supplements would be greatly appreciated! This has taken over my life and I’m now on disability.
Do you take monolaurin as well?
Thanks so much!

briannalenaemiller23 | @briannalenaemiller23 | Mar 29, 2023

Anyone going on 12+ years now? I’m 29 and my body is giving out, I was a competitive gymnast most my life and very healthy/athletic.

Now nerve like pain and increasingly darkening vision. Have had wavy vision episodes, hours long. IBS and urinary incontinence. Bad chest phlegm and pain, severely itchy scaly rash, extreme night sweats, shortness of breath,
Abnormal EKG, Abnormal CBC Auto Dif, and Abnormal Pap Smear.

Have not been diagnosed yet but am very worried about my atypical heart issues, atypical eczema, abnormal ovaries, yellowing of eyes and vision loss, as well as new spots developing in my mouth and photos that are oddly similar to that of an EBV “hairy tongue”.

clays23 | @clays23 | Apr 3, 2023

@cummings3 I see this discussion thread started in 2017...has your son's condition improved? If so, what treatments seemed to "do the trick"?

clays23 | @clays23 | Apr 3, 2023

In reply to @lindy1965 "Thanks so much! I was told to take on empty stomach and then no food for..." + (show)

I'm taking 2-3000 mg a day with food...so far so good! I think it is helping my fatigue.

eveei1986 | @eveei1986 | Apr 17, 2023

I got Covid when I was 4 months postpartum with my only child. It was an incredibly stressful time and the Covid reactivated Epstein Barr virus. I have been ill for 16 months. It has caused Hashimoto’s and celiac. All most doctors have wanted to do was put my on levothyroxine and call it a day. I found a functional medicine doctor who has given me neurological exercises and put me on a homeopathic protocol specifically for Epstein Barr Virus. He also has me taking a repairative digestive powder in the morning and at night (glutamine, aloe, ginger, etc), monolauric acid, l-lysine, IV glutathione, a supplement to support my B-cell/th2 response (my autoimmune response is Th1 dominant), vitamin D and a cream that absorbs through my skin and supports my adrenals during the day as well as another supplement to support my adrenals at night. They have me on an autoimmune paleo diet during this 8 week protocol, after which we will be adding eliminated foods back in one at a time. They have told me that gluten is often not okay for anyone with autoimmune issues or chronic epstein barr virus to consume again because it is so inflammatory. Since Covid, there has been a huge increase in reactivated Epstein Barr virus. EBV is the root cause of many adult chronic health problems. My best suggestion for others suffering from this - find an experienced functional medicine doctor with knowledge on EBV in your area. Since starting the protocol my body has been purging. It is not easy but I have a young daughter and I want to be there for her, I want to raise her. The goal is to get the EBV to go into latency again. Stress management, good sleep, nutrition and detox are all part of maintenance once the chronic reactivated EBV is addressed. If it is never addressed, it will continue to wreak havoc on you. Look into Dr. Kharrazian’s books for good info. Good luck on your journey!

clickmates | @clickmates | Apr 22, 2023

Sounds like what i went through for 28 yrs only to discover it was lyme disease the whole time. Has he been tested for lyme with a sensitive test. If he has symptoms them the cdc recommended test will not pick it up. The Elissa amd Western Blot are only 25% sensitive so most cases are never treated because of the CDCs negligence. Please consider igenex testing. I had to pay $16”” out of pocket but it was the best thing i ever did. You have to watch “under my skin”. I watched it on youtube. Pt 1&2. Good luck

clickmates | @clickmates | Apr 22, 2023

In reply to @clickmates "Sounds like what i went through for 28 yrs only to discover it was lyme disease..." + (show)

$1600

kelly619 | @kelly619 | Apr 26, 2023

After Covid Vax from Pfizer, I had the worst flare from my UC. I never had to take steroids before, but they put me on Entocort . I was diagnosed with mono as a kid, which often is caused by Epstein B Virus. Even after the flare remission, I have been exhausted. I work, but feel like a century old after work. Had RUQ pain and found out it's my gallbladder. During the MRI we found my liver is enlarged. FibroScan performed and no fat, so not a fatty liver. Thought about the days when I had mono and how I'm that fatigued. Palpated my back for pain and sure enough my spleen is really sore to touch. That's left side of back by rib cage. I'm going to start my L-lysine, NAC, multivitamin, with extra vitamin C. L-lysine you just can't go wrong taking it. It works on all herpes family of viruses and Epstein B is right there.

lovelovelove | @lovelovelove | Jul 20, 2023

To all, I don’t know if this is current and I hope many of you have improved.
I am not a healthcare professional but I found that lauricidin is excellent antiviral (it is my favorite brand but you may choose others. I just trust them. Don’t order on Amazon, we never know where they keep their stuff.). If you decide to give it a go, talk to your doctor about it, make sure you’re not allergic to ingredients and start very slowly. Ignore all dosage advice. Start with one pellet and build it very very slowly . Back down if you feel discomfort. Take your time.
Elderberry and lemon balm are also very good tinctures for EBV.
This must be tackled from all angles through diet and taking supplements. Vit D might be helpful.
Support your body when you try and kill this: you want things to move fast because it is good at creating autoimmunity. There is a lot of info out there about reasonable alternative options to support your body with EBV and keep things moving.
Stress must be managed.
Mostly I would give Lauricidin a shot.