Treatment for chronic epstein barr

Posted by cummings3 @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.

@johnbishop

@clghanimo @suzyp @jonnybear619 I thought this video might be helpful for you.

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome:
http://bit.ly/2nvf21H
I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: http://mayocl.in/1mtmR63.
Mayo Clinic Tours – YouTube Videos: http://bit.ly/2o3jvMj

John

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Michellebelle, my 25 year old son has been sick with brain fog, blurry vision and extreme fatigue. He has adjusted his diet about 2 months ago and started some supplements. Dry just say he will get better on his own. We are now looking into holistic Drs. All costs a lot of money out of pocket and no proof this will even help. My son is living half a life and the drs have no answers. Very scary stuff.

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@jonnybear619

How has your son progressed? I am 30 and have been sick for 10 weeks. I had mono at 13yrs old ebv. Have always been tired alot but now i struggle to do basic day to day things like go to work and stay sharp. Each time I do anything physical next day i have phlem sore throat congestion and feel horrible. I use to lift weights box played college football. I’m scared for my future will this ever be gone? What do i do besides rest? I pray no one has to go through this. I sleep 9 10 11 hours and still exhausted my job and happiness are in jeopardy. I just want be back to normal. I am sinking lower every day and compared to stories i see of years of this struggle i dont think i could do that. I am not able to live life right now and it selfishly breaks my heart. Please help me.

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I have been ill for six months, however I believe that I have had the EB virus all my adult life. I am now in my 60s. I manage everyday but have not regained my energy level. I’m constantly seeking more help but have not found or been set up with a treatment plan. Today I get the results back from a nutrition panel that was done last month. I’ve been to many doctors but haven’t found an expert in the field. I too am hoping for an improvement. I went from being a very energetic person and having periods of fatigue/illness to now being fatigued all the time. I keep praying that by me seeking out alternative solutions that I’ll find something to help boost my levels of fatigue. All my life I’ve lived a health life style so that isn’t a great deal I can change. Most of the diet suggestions was how I lived my life. I have added additional supplements and essential oils but I haven’t noticed any changes. I live with morning head acks, brain fog, blurry vision, fatigue and sleep most nights ten or eleven hours. I don’t nap during the day because I’m not sleepy but I am extremely tired and want to crawl back in bed all afternoon. Sorry I can’t be of any help to your son but I will keep perusing my issues and share any solutions I come across them.

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@jonnybear619

How has your son progressed? I am 30 and have been sick for 10 weeks. I had mono at 13yrs old ebv. Have always been tired alot but now i struggle to do basic day to day things like go to work and stay sharp. Each time I do anything physical next day i have phlem sore throat congestion and feel horrible. I use to lift weights box played college football. I’m scared for my future will this ever be gone? What do i do besides rest? I pray no one has to go through this. I sleep 9 10 11 hours and still exhausted my job and happiness are in jeopardy. I just want be back to normal. I am sinking lower every day and compared to stories i see of years of this struggle i dont think i could do that. I am not able to live life right now and it selfishly breaks my heart. Please help me.

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Thank you for your response. Those are the same symptoms my son has been having for the past 11 months. Since you are in your sixties, have you looked into hormone therapy. I’m 52 and for the past year I have been doing pellet therapy to help with energy and wow it is really helping me. The estrogen and testosterone are put in a pellet and I get it implanted every 3 months. The progesterone is given in pill form at night. My problems I was having were from menopause but this could be something for you to help with energy. My testosterone was undetectable when I started the therapy. Literally turned back the hands of time for me. I know this is off topic but worth looking into.

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@jonnybear619

How has your son progressed? I am 30 and have been sick for 10 weeks. I had mono at 13yrs old ebv. Have always been tired alot but now i struggle to do basic day to day things like go to work and stay sharp. Each time I do anything physical next day i have phlem sore throat congestion and feel horrible. I use to lift weights box played college football. I’m scared for my future will this ever be gone? What do i do besides rest? I pray no one has to go through this. I sleep 9 10 11 hours and still exhausted my job and happiness are in jeopardy. I just want be back to normal. I am sinking lower every day and compared to stories i see of years of this struggle i dont think i could do that. I am not able to live life right now and it selfishly breaks my heart. Please help me.

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Thank you for your reply back. Yes and Yes. I too went to a Wellness Doctor who has shot me up with hormone pellets and I take progesterone. I do see some positive results from this therapy however it has not helped me with my fatigue. I just came back from an appointment with this doctor and I now have an additional supply of micro-nutrients that I am going to start today. Like the hormone therapy these supplements are to build up my immune system. I have been talking numerous supplements but I now just added five more. These supplements were recommended based on nutritional blood work that was done. I’ll keep you posted if this helps my situation. The doctor I saw said there wasn’t anything else to do except to build up my immune system and rest.

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Has anyone heard of vitamin C IV treatment and hyperbaric oxygen therapy?

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My son has an appointment with a neurologist next month. If we continue to not find any answers to help him, our next appointment is with a holistic dr. We are planning to try IV vit C which I’ve heard can help. He has done a few infrared sauna treatments which he finds comforting, not sure if it’s helping. Another thing we are going to explore is ozone therapy, which sounds scary but we are going to look into it. I will keep everyone posted if he finds anything that gives him any relief.

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@lynnieb1

Cummings3, Yes please keep us posted if this helps. One thing I have learned is it’s up to us to find answers to this illness. My son did see a infectious disease dr but he just said to rest and he will eventually get over it. It’s been 9 months and he feels the same. No better. I think the bodies immune system thinks it’s healed. He is trying an extreme diet to cut out sugar and processed foods, some herb remedies and a colon cleanse. We will see a neurologist next. He has seen an ENT, eye dr, infectious desease dr, internist, allergist, and has had an MRI. Everything come out normal except that he had recent EBV. We will see a neurologist next, his main symptom is extreme fatigue that sleep will not cure, blurred vision and concentration problems. Please keep me posted and anyone else that has advice. I think we are alone in this.

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Hello, I wanted to follow up with you on my son’s progress. As I discussed in November-my son was referred to a neurologist that specialized in the autonomic nervous system and she feels that the EBV has damaged the Autonomic Nervous System. This was after 2 years of extensive testing from Infectious Disease and Autoimmune. He was denied being seen by the Mayo Clinic and the Cleveland Clinic the past 6 months. She has put in on Alpha Lipoic Acid (Antioxidant to reverse damage) and Mestinon ( to control heart rate variability). We also started working with a well known Chiropractor that is working on his Parasympathetic system and vagus nerve. My son has shown a slight improvement after doing these treatments for 8 weeks now. He goes back for follow-up testing in February and she may want to start him on the Alpha Lipoic Acid IV therapy to absorb more into the system quicker. This is the first time that we have had any hope and I am praying that it continues to help him! I will keep you posted on upcoming results. Good luck to you- I know as a mother how frustrating this is!

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@lynnieb1

Cummings3, Yes please keep us posted if this helps. One thing I have learned is it’s up to us to find answers to this illness. My son did see a infectious disease dr but he just said to rest and he will eventually get over it. It’s been 9 months and he feels the same. No better. I think the bodies immune system thinks it’s healed. He is trying an extreme diet to cut out sugar and processed foods, some herb remedies and a colon cleanse. We will see a neurologist next. He has seen an ENT, eye dr, infectious desease dr, internist, allergist, and has had an MRI. Everything come out normal except that he had recent EBV. We will see a neurologist next, his main symptom is extreme fatigue that sleep will not cure, blurred vision and concentration problems. Please keep me posted and anyone else that has advice. I think we are alone in this.

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Hello and thank you so much for your response. I will share this with the neurologist we are seeing in February. What treatment is the Chyropractor doing, I know they tend to do more therapy for symptoms?

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@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 @jenchaney727! Thank you so much for this information. I just was tested for EBV after 20 years of suffering from fatigue. My naturopath says I have a chronic infection so I will share this protocol with her.

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@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 @rengher. Welcome to Mayo Clinic Connect. Sorry to hear you have suffered for 20 years. That’s a long time.

Let us know what your naturopath says. I’m interested to hear what she will do with the information and what will be put into place for you. Keep us updated on how you are feeling during treatment. Hopefully what you report back to the group will help another member.

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Our daughter is 19 and she first was diagnosed with mono 2 years ago. She was diagnosed again last August (2017). She has had a positive EBV titre for the past 5 months. We just got the results of her latest test today, and we’re so disappointed that she still has it. She has been trying to continue her education in massage therapy, but she is completely wiped out after a short time. We’re desperately seeking information and advice on how to treat, control, or manage this disease.

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Hello @jluster7 — Welcome to Mayo Connect. Thank you for being a strong advocate for your daughter. Connect is a good place to ask questions and learn what others with similar health problems are doing for treatments. I’m tagging @clghanimo @jenchaney727 @suesiegel @arriba @copiela @jatl @cheryldotson @cummings3 @aman_23_23, who have all discussed Epstein-Barr Virus (EBV), and I’m hoping they will be able to offer some more insight.

Here are a few conversations on Connect that you may find useful:
– Chronic Pain members – Welcome, please introduce yourself http://mayocl.in/2tz0bcE
– I just need some answers!!! Please help me!!! http://mayocl.in/2uf42sH

More information from the National Institutes of Health on the Epstein-Barr Virus treatment:

Optimal Treatment for Chronic Active Epstein-Barr Virus Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2776035/

I’m not sure if it is an option for you but if you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: https://www.mayoclinic.org/appointments

John

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