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cummings3
@cummings3

Posts: 15
Joined: Jan 23, 2017

treatment for chronic epstein barr

Posted by @cummings3, Jan 23, 2017

My son has been suffering with this 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.

Liked by nacc, pijax, mapchap

REPLY

Hello @cummings3,

I’m sorry to hear about your son’s diagnosis, but I’m so glad you chose to come to the Connect community to seek support and get some answers.

For now, I’d like to introduce you to @jenchaney727, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson, who have all discussed Epstein-Barr Virus (EBV), and I sincerely hope they will return with some more insight.

Here is some more information from Mayo Clinic: http://mayocl.in/2iYRh3v

@cummings3, chronic fatigue is one of the symptoms of this condition; could you tell us a little more about your son? How old is he? What other symptoms does he have?

My son is 17yrs. old and a senior in high school. He got the Epstein Barr virus 14 months ago, which caused Mono with another relapse with it a month later. His doctor made him homebound from school for 4 months, due to the severity of this. He has been to see an immunologist and infectious disease doctor, but no help in solving this puzzle. Since diagnosed with Chronic Epstein Barr, he’s been constantly fatigued, just doesn’t feel great half of the time, and is constantly contracting other infections and viruses.

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.

Yes, It seems to be the situation with everyone dealing with this horrible virus. Told what you don’t have, but no answers on where or who to go to for help! I don’t know how my son is going to be able to deal with college next year, because his fatigue is so bad.

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

@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

Jump to this post

Thank you so much for all of this great information! I having been reading a lot about natural supplements and we are willing to try anything to help with his symptoms! He is not currently on any medication, but I have been giving him vitamin C daily and a diet rich in protein. Thanks again for all of you help and insight!!

Liked by kschmoyer9

Hi EBV sufferers! I wish I had seen this earlier, but I just came across it today. First of all, I want you to know that you’re not alone in your misery. I was a senior in high school when I had my first episode of mono. I ended up missing almost half of the school year. Couldn’t stay awake. No energy. My whole body was affected. At age 22, it happened again. The doctors gave me prescriptions for to combat the fever, upper respiratory, headache, sinus infection, etc., but nothing helped! I went to another doctor for a second opinion and after an examination and some other tests, the diagnosis came back as Epstein Barr Virus. Unfortunately, I also found out that I would have to live with this for the rest of my life and I had even higher chances of developing mononucleosis again and again and again. I never know when this virus is going to rear its ugly head, but finally, after 30 years of struggling I have my life back. Two years ago I was at the end of my rope. A friend of mine introduced me to some of the most amazing supplements from Plexus Worldwide that I have ever tried.

Liked by mapchap, peachybelle

Hello and welcome @kschmoyer9! Wow, what a journey! Thank you for sharing.

I’d like to introduce you to @jenchaney727, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson, who have all discussed Epstein-Barr Virus, and I sincerely hope they will return with some more insight.

I’m glad that you have found us and look forward to seeing you connect with others who also struggle with EBV. Supporting and talking about what tips you have for each other is so helpful.

@kschmoyer9, what advice can you share with @cummings3, whose son is 17 and diagnosed with EBV?

Hi Everyone, I am at the beginning and yet middle of my journey. I had mono when I was 20 and have struggled with severe fatigue off and (mostly) on again ever since. I have been repeatedly diagnosed with depression because of the fatigue. Finally, 3 years ago, my dr. decided to run another mono test and sure enough, I had a current or recent infection. Fast forward to last week. I have moved across the country and am now with a new dr. I finally decided to ask for another mono test and sure enough, again, I tested positive for a current or recent infection. For me, it makes sense of my 26 years of fatigue. Now I am hoping to figure out what I can do to somehow recover from/mitigate this frustrating pattern.

@jamienolson

Hello and welcome @kschmoyer9! Wow, what a journey! Thank you for sharing.

I’d like to introduce you to @jenchaney727, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson, who have all discussed Epstein-Barr Virus, and I sincerely hope they will return with some more insight.

I’m glad that you have found us and look forward to seeing you connect with others who also struggle with EBV. Supporting and talking about what tips you have for each other is so helpful.

@kschmoyer9, what advice can you share with @cummings3, whose son is 17 and diagnosed with EBV?

Jump to this post

I would love to know what the specific supplements/treatments are that people have tried.

@jamienolson

Hello and welcome @kschmoyer9! Wow, what a journey! Thank you for sharing.

I’d like to introduce you to @jenchaney727, @suesiegel, @arriba, @aman_23_23, @copiela, @jatl, @cheryldotson, who have all discussed Epstein-Barr Virus, and I sincerely hope they will return with some more insight.

I’m glad that you have found us and look forward to seeing you connect with others who also struggle with EBV. Supporting and talking about what tips you have for each other is so helpful.

@kschmoyer9, what advice can you share with @cummings3, whose son is 17 and diagnosed with EBV?

Jump to this post

I would love to tell you more about them. I take their probiotic (ProBio 5-it has an anti fungal, enzymes, and 5 probiotic blend). A special multivitamin (XFactor-it has a special blend of Aloe in it to help with absorbing nutrients better). These two help strengthen my immune system.
Plexus Slim helps balance my blood sugar.
MegaX (Omegas 3,6,9, + 5&7) helps my insomnia.
BioCleanse (Magnesium) helps oxygenate my cells and gently cleans out my gut.

I know it sounds like a lot, but I can’t believe the difference these products have made in my life.

Liked by melissavaughn

I was diagnosed with Chronic Epstein Barr four or five years ago. However, I have had symptoms for 15+ years. Very long story short…I’ve also been diagnosed with Chronic Fatigue Syndrome, sick sinus syndrome, MTHFR gene mutation, hypothyroidism, and I can’t remember everything else. I’ve noticed from the recent posts I’ve read that nobody has mentioned seeing a doctor at Mayo Clinic. I see a great doctor who is treating all of these illnesses, but my family is urging me to go to Mayo. The doctor is in support of this, too. I’m wondering if it would be worth the exhaustion and expense of traveling over 1,000 miles, hotel stay, and eating out. I’m concerned that no better treatment is known and that
This will be a waste of my time and money…which is low due to not being able to work. I had to take early retirement. I need some advice here, please.

Liked by nacc

@airsleeper

I was diagnosed with Chronic Epstein Barr four or five years ago. However, I have had symptoms for 15+ years. Very long story short…I’ve also been diagnosed with Chronic Fatigue Syndrome, sick sinus syndrome, MTHFR gene mutation, hypothyroidism, and I can’t remember everything else. I’ve noticed from the recent posts I’ve read that nobody has mentioned seeing a doctor at Mayo Clinic. I see a great doctor who is treating all of these illnesses, but my family is urging me to go to Mayo. The doctor is in support of this, too. I’m wondering if it would be worth the exhaustion and expense of traveling over 1,000 miles, hotel stay, and eating out. I’m concerned that no better treatment is known and that
This will be a waste of my time and money…which is low due to not being able to work. I had to take early retirement. I need some advice here, please.

Jump to this post

Wow! I wish I had some great advice for you about the doctor situation, but honestly I don’t. I only go to the doctor when I need to, because unless they are familiar with EBV and what that all entails, then they’re only going to treat what they see on the outside. I am finding out though that there are naturopath doctors who are more willing to step outside the box, which is really what we need. I have also learned from usage and personal study that certain supplements play a huge role in getting our gut healthy, inflammation control, energy, and better sleep. I could not have done as much as I have been able to do these last two years without these supplements working on the inside of my body. By the way I use a great multi vitamin called XFactor, that is fully methylated (perfect for those that have the MTHFR gene mutation) and it is infused with a special blend of Aloe to help with absorption. Feel free to ask me questions if you’re interested.

@airsleeper

I was diagnosed with Chronic Epstein Barr four or five years ago. However, I have had symptoms for 15+ years. Very long story short…I’ve also been diagnosed with Chronic Fatigue Syndrome, sick sinus syndrome, MTHFR gene mutation, hypothyroidism, and I can’t remember everything else. I’ve noticed from the recent posts I’ve read that nobody has mentioned seeing a doctor at Mayo Clinic. I see a great doctor who is treating all of these illnesses, but my family is urging me to go to Mayo. The doctor is in support of this, too. I’m wondering if it would be worth the exhaustion and expense of traveling over 1,000 miles, hotel stay, and eating out. I’m concerned that no better treatment is known and that
This will be a waste of my time and money…which is low due to not being able to work. I had to take early retirement. I need some advice here, please.

Jump to this post

Wish that I had some great advice for you, also! My son was diagnosed with chronic EBV last year and is struggling with constant illnesses and fatigue. He never feels well and is supposed to be leaving for college in the fall. His primary care doctor has tried to get him in with infectious disease at Vanderbilt (after getting nowhere with local ID doctors), but they rejected his case. I called the Mayo clinic to try and schedule an appointment, but they do not see chronic EBV patients… only Chronic fatigue. We are in the process of trying several different supplements and seemed to have success, until a few weeks ago. He was hospitalized with a horrible bacterial virus that they are blaming on a tick bite? I am going to continue to take anyones’s advice with the supplement recommendations in hopes to find something that helps! You may want to get your foot in the door at the Mayo clinic for your Chronic Fatigue Syndrome and take it from there.

@airsleeper

I was diagnosed with Chronic Epstein Barr four or five years ago. However, I have had symptoms for 15+ years. Very long story short…I’ve also been diagnosed with Chronic Fatigue Syndrome, sick sinus syndrome, MTHFR gene mutation, hypothyroidism, and I can’t remember everything else. I’ve noticed from the recent posts I’ve read that nobody has mentioned seeing a doctor at Mayo Clinic. I see a great doctor who is treating all of these illnesses, but my family is urging me to go to Mayo. The doctor is in support of this, too. I’m wondering if it would be worth the exhaustion and expense of traveling over 1,000 miles, hotel stay, and eating out. I’m concerned that no better treatment is known and that
This will be a waste of my time and money…which is low due to not being able to work. I had to take early retirement. I need some advice here, please.

Jump to this post

Hello @airsleeper, I can understand the hesitancy to travel to Mayo Clinic in regards to cost. I would recommend contacting the Mayo Clinic Concierge Services department if you are seriously considering an appointment. Mayo Clinic Concierge Services in Rochester, Minnesota help make your trip go smoothly. They provide information about travel, lodging, Mayo Clinic and community resources to plan your visit free of any cost to you. You can get information about their services before you make an appointment using this link, http://bit.ly/2nM3mr0.

If you are curious about getting a second opinion, you can start that process by using this link, http://mayocl.in/1mtmR63.

@airsleeper, it sounds like you are dealing with a lot of different diagnoses. How are you managing them all currently? Have you asked if your physician is willing to give you a referral to Mayo Clinic?

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