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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You might want to try a functional medicine physician in your area….

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Super interesting the number of people who were DXd with Hashimotos’ who also have Chronic EBV. I was Dxd with this in my early 30s and had radioactive iodine therapy. Hmm. Does anyone know if there is a link between Hashimoto’s and Chronic EBV?

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@akhippiechic

Super interesting the number of people who were DXd with Hashimotos’ who also have Chronic EBV. I was Dxd with this in my early 30s and had radioactive iodine therapy. Hmm. Does anyone know if there is a link between Hashimoto’s and Chronic EBV?

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I have been researching both Hash and CEB…:i have been dx with both high antibodies of each. They seem to go together…a dr told me one time that my low thyroid made me suseptable to a lot of other illnesses.

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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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It does sound similar. I don’t have all of the issues you have but the recurrent infections is very familiar. (I am pre-diabetic and have sleep apnea)

I have to say that despite the last year being extra difficult, I just had a great month. I traveled to Europe wtih my family and was blessed with energy to make it through the trip. I don’t know what to ascribe it to . . . many, many prayers by myself and on my behalf, more vitamin D, sweating out impurities, walking tons (which usually takes me down fast), the vitamins I started taking before and during my trip (I followed mostly what jenchaney727 posted above as well as liquid coenzyme Q–Costco sells this at a good price–Fish oil supplements–Wild Alaskan Salmon Oil–also at Costco, and a good probiotic.) Maybe it was all of the above. Who knows. It has helped me to build up my stamina and now I can excercise low/moderate intensity for much longer (30-60 minutes) without it making me sick.

I also looked at the reply posted below by akhippiechic and read about LDN therapy. It talked a bit about how endorphins help the immune system. Maybe the excitement of traveling did something too. I don’t know, but I am making a point of getting outside daily, getting more exercise and trying to find ways to enhance my endorphins.

I know there are plenty more ups and downs ahead, but at least I am on a good track for now. I hope this helps and I am sorry about your suffering. It is so hard to find a dr. who understands. I haven’t found one yet. I guess that is why we have to support each other.

Best Wishes,

Julie

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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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Thanks for mentioning LDN therapy. I am looking into it. I thought the info about endorphins on the lowdosemaltrexone.org website was really interesting.

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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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Thank you …its great you could enjoy your trip ! There must be something to the endorphins …when i go on a trip I usually have more energy …enough to enjoy myself but then when i come home i crash . I am getting set up with a functional dr. My neurologist ordered did order an iron; ferritin and B 12 , the other day for my fatigue . I had a rough year with 3.surgeries on the same year so it could be part of the reason I’m having a bad flare right now. Best wishes to you as well !

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Hi. I have read the good majority of everyone’s posts regarding their struggles with this virus. I was diagnosed in October 2016, with mononucleosis (relatively moderate to high ranges for each test), and felt pretty horrible for a short period. I never had a fever, swollen lymph nodes, and/or rash, but my upper left abdominal hurt and my body felt like I was hit with a Mack Truck. After several weeks, my PCP ordered an abdominal CT scan (without contrast), which did not reveal anything of concern. I started to feel much better with more energy and sporadic upper left abdominal pain, but had to take a short of leave of absence from work. More recently – last week – had my blood levels rechecked. I was totally alarmed by the current results. It showed: EBV EA (D) An, IgG = 101.00, EBV EBNA = 164.00, EBV VCA – IGG = greater than 750.00. It showed a much worse scenario with this virus, however, my WBC actually decreased from 10.8 to 10.1, and there was no indication of thrombocytopenia. My PCP admitted he was at a loss with understanding these results and has now referred me to an infectious disease specialist. I’m waiting for an appt. Any insight to this craziness??

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Welcome to Connect, @penelope41,

I can completely understand your concern, however we cannot diagnose conditions, or make specific treatment recommendations through Connect. That being said, I am confident that the members in this group will be able to offer more insight into your symptoms and test results. If you would like to get a second opinion from Mayo Clinic, you can start that process by using this link, http://mayocl.in/1mtmR63.

I’m tagging Connect members @jenchaney727, @suesiegel, @aman_23_23, @copiela, @jatl, @cheryldotson, @clghanimo, @dash99999, @emmie, @suzyp, who have all discussed Epstein-Barr Virus (EBV), and I’m hoping they will be able to answer your questions.

This Mayo Clinic webpage has some relevant information on EBV which you might also wish to view:
http://mayocl.in/2iYRh3v
I’m glad that you have found us and we look forward to getting to know you; @penelope41, are you experiencing any symptoms such as fatigue or other recurring infections?

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Has any one had any success supplimenting L-lysine to suppress epstein barr? I know they use it to treat other viruses of the herpies family.

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Welcome to Connect, @halberryo,

Although not always for chronic Epstein-Barr, @jencheney727 @rpkelderman @bestcare @coastalgirl, have discussed the benefits of L-lysine and some other supplements, and I wonder if they have more information?

@halberry0, please note that Mayo Clinic advises that people consult with their current care provider before making any changes to their existing medication or treatment plan. 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 http://mayocl.in/1mtmR63.

We look forward to learning more about you so we can help Connect you with members who may be able to offer more insight. Have you been diagnosed with this condition, Hal?

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I am desperate. I am 47, and I had Mono in December 1987 so bad that I was in the hospital for a week needing platelets. At first, I was scheduled for a bone marrow test because the GP who put me in the hospital wasn’t sure I had leukemia. The lab tests came back with a positive EBV, so they begin to give me lots of meds and platelets to help build my blood levels back up so that I could move. I was covered in peteckei and was not allowed to move unless two nurses were with me because of the risk of rupturing something.
I had been sick for 3 months, and my parents finally decided to get a second opinion. I am so thankful they did. Two years later, the same thing happened when I got pregnant. I felt horrible and was put back in the hospital because I couldn’t stop bleeding and lost that baby. I had had a sore throat, headache, and fatigue for weeks before this.
In 2002, I had a Roux N Y gastric Bypass to lose weight. I weighed 325 pounds at 5′ 4″. After the bypass, I felt amazing. I might add I had two live births and never had another diagnosis of mono again.
My GP was so shocked that all he could find that second time in the hospital was EBV.
In 2006 I had to have a hysterectomy, and since then, I have been constantly dealing with immunity and fatigue issues. My bladder was torn and instigated interstitial cystitis. That in itself has been absolutely horrendous to finally find a docotor who could help with it.
Two years ago I was mono positive again. I am so discrouraged because not one specialist I’ve been to takes me seriously. Depression has become a daily battle, and now I am in full blown menopause. I have had to miss so much work that I finally took a leave for 14 months in hopes to rest and be able to work again.
I know menopause can cause lots of similar issues, but after a very long visit with the best GYN in my area, he explained to me that once I began getting estrogen back in my system, those symptoms would calm down. They haven’t. I used to be able to lie in the sun for hours, now the heat absolutely make sure me nauseas and weak. I also take a ton of minerals, vitamins, probiotics and stay completely away from processed foods, sugar, dairy, and vegetables. I am on a high protein, very low carb diet.
I’m a teacher and have been so excited to hopefully be able to go back to work. But the last 7 weeks I have had a very sore, swollen tonsil, swollen glands, headache, and extreme fatigue.
My GO has run me through 3 different antibiotics, and she took a culture. It is vital, so I am to just rest.
I’m so exhausted trying to find someone who will help me, and I really want to come to Mayo and see someone there because I have been told that Mayo doesn’t just look at one piece of the puzzle.
Over 23 doctors in my area have done little to nothing to help me.

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So sorry to hear of your suffering. I was done with doctors also when they told me nothing was wrong with me. I was sure I had lost my mind or was dying and no one could figure it out. A functional medicine doctor was able to DX me and give me supplements that seem to help. Doesn’t mean I don’t still have all the symptoms (sore throat, inflamed lymph nodes, fatigue, fever, myalgia and arthralgia) but they are BETTER. The best thing I have done for myself so far is trying to accept that I really am ill and not making this up and treating myself accordingly (if you are sick you rest, eat right, and respect your needs in the moment). Sending thoughts of peace and recovery! Lee Anne

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