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.

@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.

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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.

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@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.

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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.

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@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.

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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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I would just like to add that it is wise to consult with your physician before starting any new supplement regimen. Some supplements can alter the way medication is absorbed or its effectiveness. It is advised to always discuss supplement, medication, or diet changes with your medical provider before making those changes, especially in regards to rare or chronic conditions.

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@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.

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I a man currently going through something similar to your son. I was misdiagnosed with fibromyalgia for almost 10 years. I started feeling weaker and my pain became debilitating worse than it ever has, lost my career because of it and couldn’t walk 5/7 days for 3 months. I had my pcp run the full work up, my gut said there’s something wrong. I ended up having degenerative discs disease which ended up after 10 years now it was only manageable and not treatable which my pain management oversees… within the next 3 months I had mono. I had it once when I was 14, then two months later and about 40 lb weight loss without trying they finally did more bloodwork. I started getting weaker naturally and then my blood work came back and I now had astronomical EBV levels and my positive ANA were back. I was diagnosed with CAEBV. I was down from 188 to 133 from May to December. My family thought I was doing drugs and my wife and her family who we live with were now scared worried. From January to now I have had lymphadenopathy over 5x, fevers that lasted over 6 days, swollen organs, on a 3500 daily calorie diet and about 4 weeks ago I was bit by a tick at work. Within a week I couldn’t move my arm because it was numb but hurt so bad, it felt like there was so much painful pressure in the back of my head, list can go on. They put me on Doxycycline which made my body have astronomical ACID levels and I was taken off only after 2 weeks instead of the 4. Within 3 days I had such a bad rash on my chest, arms, back and face that my wife could see it in the pitch black, fevers, my pain is back to all time high, All my lymes tests have come back negative, my ANA is positive but so low that they don’t do anything for it apparently, I literally feel like weights are on my body, and the headaches are horrible. in some ways I am in the same boat as your son. At 27 this isn’t the life anyone should live.

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@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.

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Hi , i feel impressed to reply to your post . I’m so sorry you have been going thru this ! I was dx with fibro 20 years ago by a rheum dr. For my constant achiness. About the same time I started getting mono symptoms …my pap said i had a deactivated case of mono..Epstein Barr…since then i continued to get flare ups . Right now my health has gotten worse: pain in the liver area , a facial rash , and extreme achiness and fatigue . I feel sure i am in the 4th stage of CHronic Epstein Barr…my current pcp just says it’s stress …i am stressed because i don’t know where to get help…. he doesn’t acknowledge the problem and has no idea what to do with me .

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@juliemd

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.

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Hi Juliemd, I’m sorry for what you have been thru…..It has been over 20 yrs for me too dealing with the virus. When I had the typical symptoms my dr. Would run the blood work and would always say it showed the virus had “re-activated ” from my initial case of non which i don’t remember when that was. Do you think the same thing was happening with us? I have all the symptoms of mono but now i have diabetes, high blood pressure, sleep apnea, and arthritis . My thyroid gland Burnt out from Hashimotos 34 yrs ago. Besides feeling exhausted, i can’t find a dr. To help me ,..they are too busy taking care of my diabetes and high bp, lol

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@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.

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Thanks, Justin, for your input. I haven’t responded since I posted because lot of
Things have been going on. However, I have gotten an appointment for early August and am all set to make
The trip from Texas to Minnesota. I’m looking forward to hearing what the Mayo docs think, but honestly I’m not hopeful they will be able to tell me anything more than I already know. I’m trying to accumulate as much of my medical records as I can gather so that the doctors at Mayo won’t have to reinvent the wheel with my case. I’ll keep you posted.

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@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.

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Hello @suzyp,

Welcome, and thank you for joining this discussion, and sharing your story. I can imagine how worried and stressed you must be!

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

You may click on any of the above links, and you will be directed to conversations centered around the complications you listed. In each discussion you will meet many great members talking and sharing similar experiences.

Meanwhile, 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.

@suzyp, have you considered getting a second opinion, or perhaps changing physicians?

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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 so understand your dilemma. I am 60 this month and have had this issue since I was in my 30’s. It was nothing to lay down to take a nap and wake up 4 or 5 hours later and still be exhausted and ready for bed at night. I am still fighting to get someone to recognize what I am trying to say. I went to the Dr. this past week with the complaint of painful joints, brain fog, headache and exhaustion. At the appointment she raises my Zoloft and talks to me about my mood and the she sends me for blood work to check my thyroid and A1C. Recommendation to watch what I am eating and she will see me in a month. My job is suffering, my family life suffers, and my health continues to suffer. I am not sure how many times over the years I have asked myself “is it really just in my head?” Sorry to be a downer, I do have wonderful moments. I have realized that I have to force myself to keep going and the more I move I do forget about the pain. I am also still looking for help.

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@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.

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Hi , all the natural doctors have wanted to do is fill me up with supplements..
what kind of a dr treats CEB ?

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