1. < Infectious Diseases

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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mblack | @mblack | Aug 30, 2019
In reply to @kittykiernan "Oh so we feel alike. Interested what immune did you find? For the drs to test?..." + (show)
@kittykiernan

Oh so we feel alike. Interested what immune did you find? For the drs to test? Unreal we have to tell them

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Unknown at this point. I've searched the internet so much because all of the doctors I've seen have no idea. My A/G test in my bloodwork came back high which I was told is autoimmune related. From what I've read that could be one of many different syndromes as my symptoms fit quite a few. More bloodwork needed.

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mblack | @mblack | Aug 30, 2019
In reply to @michellebelle "If you haven’t already, become a member of Facebook’s EBV group and read, read, read everyone’s..." + (show)
@michellebelle

If you haven’t already, become a member of Facebook’s EBV group and read, read, read everyone’s posts. I learned a great deal and followed nutrition, treatment and activity advise. There was so much to learn. I’m doing better after two years of following suggestions. I didn’t have a single doctor who knew enough about this illness. I had to request my doctor write me scripts for what I heard worked for others.

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I joined the two I found, just waiting to be added. Thanks

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kittykiernan | @kittykiernan | Sep 2, 2019
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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I need help I reactivated my neck is so swollen, I can not stay awake for 2 hours of the day, I feel viral every bone hurts I’m at a loss .my infectious dr kicked me out saying insulted her medical intelligence by showing her the thread I follow she said only uneducated people follow these threads. I know my body I know I have non Hodgkin no one helps me. ER docs I do not see anythin,well getting your dirty I phone out of my face to look down my mouth white patches there for a month, finally broke down I felt like there was really something wrong. I felt off. They say strep, then another one said tonsillitis they are all wrong. I lay in bed hoping I bleed from my ears 9 months with no one to see what immune disorder I have. A rash was on my face 7 months, already had one lymph biopsy Benign. So? Means nothing. I have a go fund me page no one donates. It like 750 dollars to walk into a Intergretive place. They will do everything for me. What is this a rich person disease? My primary checked out

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bavardlyn | @bavardlyn | Sep 26, 2019

I didn’t read all ur posts but I caught this one. Some of ur symptoms sound similar to mine. Maybe ask doctor if you could have Strep B, he will prolly look at u crooked though. It’s different from Strep that causes sore throat. Most of info you will find has to do with pregnant woman, because it can be transmitted to child during birth and can be fatal. It’s only been in recent years that it has morphed into a bit of a “Superbug,” affecting more people with weak immune systems. I broke out in rash and sores all over my body. My primary Dr actually took a scraping of sore to diagnose it. Good luck!

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mengla01 | @mengla01 | Sep 29, 2019
In reply to @lesliegrill "Have they done tests for Specific Antibody Deficiency? this is my case and I suffer the..." + (show)
@lesliegrill

Have they done tests for Specific Antibody Deficiency? this is my case and I suffer the same. it took YEARS to be diagnosed.

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Can you tell me what type of doctor you saw to have this testing done? My daughter is suffering and I would love to find someone who may help her.

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lioness | @lioness | Sep 29, 2019

I don't understand Dr.s now a days . Just my family Dr. sent me in for the EBV blood work and it showed the high titer count But I had the rash also that's how high my count was . She said usually you don't have the rash with it but any Dr. should be able to order the blood work. I would request this specifically from Your Dr if you have the symptoms , CFS,sore throat, listlessness ,the big one is fatique. I had to go on the sick list from work till I got better . Bedrest ,fluids ,a lot of vitamins as I remember . Have you tried Infectious disease Dr. Endocrinologist , Rheumatologist but your PCP should also know about EBV Good luck everyone

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dollin | @dollin | Oct 15, 2019
In reply to @mblack "I contracted EBV in 2015 from someone in the gym I was going to. I went..." + (show)
@mblack

I contracted EBV in 2015 from someone in the gym I was going to. I went from being in the gym every day to barely being able to move. This all happened one month before I turned 40 so I caught it late and it took months of doctor visits to get that much. As things progressed I was diagnosed with CFS. Fifteen months ago I ended up in the ICU and since then I literally feel like I've been poisoned, that's how bad I feel on the inside. I feel like my mind is gone, my pain is debilitating, dry eyes, stomach and digestive problems, neuropathy in my feet, mouth issues, can't deal with temperature changes, cold hands and feet but sweating,oversensitive nerves, sinus infections that antibiotics couldn't touch so I had to have sinus surgery and the list goes on. Now after numerous ER visits and about 15-20 specialists I've been told it may be Chronic EBV but now my bloodwork is showing an autoimmune disorder and this was only after I told them to test me for it. It looks like a reactivation that does not go away. The problem with this illness is Doctors DO NOT know about it. I'm scheduled for an endoscopy in two weeks then onto the infectious disease doctor. I'm to the point that I am so miserable that I enjoy nothing. I've tried to read as many of the posts as possible and it seems like we all have the same issues of varying degrees. Has anyone had luck with Anti-Viral meds or anything else?

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Hi antivirals did help me and gave some relief from the reactivation of mono. It turned out to be Epstein Barr after many times requesting a blood test. My regular doctor an internist recommended them. I went to a very expensive infectious disease doctor and there is no cure only some treatment with antivirals. There r surgical treatments in Germany and Belgium where A famous female singer went and is now touring. The infectious disease doctor said just treat the symptoms as they come. A doctor from the national institute of health is working on some injections for prevention and different stages of Epstein Barr.

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1 reply
dandy | @dandy | Oct 16, 2019
In reply to @dollin "Hi antivirals did help me and gave some relief from the reactivation of mono. It turned..." + (show)
@dollin

Hi antivirals did help me and gave some relief from the reactivation of mono. It turned out to be Epstein Barr after many times requesting a blood test. My regular doctor an internist recommended them. I went to a very expensive infectious disease doctor and there is no cure only some treatment with antivirals. There r surgical treatments in Germany and Belgium where A famous female singer went and is now touring. The infectious disease doctor said just treat the symptoms as they come. A doctor from the national institute of health is working on some injections for prevention and different stages of Epstein Barr.

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I'm glad you have put this out there. When I came down with EBV eight months after spinal surgery. The EBV attacked my joints. I couldn't care for myself....basic needs. My Internist never heard of using antivirals, like Acyclovir to treat it. I learned about here, on this forum. I mean, EBV is in the herpes family, it only makes sense. We have to educate ourselves....especially when you have a doctor that doesn't care to investigate to help.

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cstrandberg | @cstrandberg | Oct 23, 2019

I had mono when I was 20. I'm now 52 and got very sick in July and my EA test showed reactivated EBV. I now think I have CFS. I'm extremely fatigued and weak/achy in the legs. Been through 4 specialists who can't find anything. All of them deny that reactivation can cause symptoms. Am I going crazy?

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2 replies
momnxtdr | @momnxtdr | Oct 23, 2019
In reply to @cstrandberg "I had mono when I was 20. I'm now 52 and got very sick in July..." + (show)
@cstrandberg

I had mono when I was 20. I'm now 52 and got very sick in July and my EA test showed reactivated EBV. I now think I have CFS. I'm extremely fatigued and weak/achy in the legs. Been through 4 specialists who can't find anything. All of them deny that reactivation can cause symptoms. Am I going crazy?

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No, you are not crazy! I've only had luck with an immunologist, naturopath, and acupuncture. High protein, high fat, low carb help. So does taking electrolytes. I use a Nuun tablet in my water every morning. Ultima is another good brand. Best wishes to you!

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