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.

Hi, my name is Vincent Ernst, I contracted Mono between 2014 and 2015 and have a persistent, on and off again feeling of lethargy and general weakness, in addition to other vague symptoms. It is unclear when exactly I contracted the infection since only an EBV anti-body count tested in early 2016 confirmed that the infection had taken place “recently”, and perhaps at this stage this had already become chronic. To provide some context, I first started feeling unwell in Autumn 2015, when I noticed that I was frequently feeling sick, but not seriously ill with any fever or severe symptoms. It was like a mild cold every two or three weeks. During this time period I was completing senior year of high school as well as studying for my IB Diploma and I didn’t miss a single day of school. I also performed as a DJ at parties, whilst sick and also drinking alcohol. This stress never seemed to impact my symptoms. This phase lasted until my 18th birthday, in mid February 2016 and suddenly ceased for some time until early may when I contracted a bad flu and was then hospitalized with double Pneumonia, thus missing my Final HS Exams. In late 2016 there was a second, three month phase where my symptoms worsened and didn’t go away. I was treated homeopathically with 2LEBV, antiviral, immuno-stimulating drug, as well as other supplements. After taking some newly prescribed probiotics at the end of this three month period, I miraculously recovered within a few days. However, this year I still got ill frequently, always preceding or following events of high stress and alcohol consumption. I also got Pneumonia again, however far less severe than the first time. As of this writing where I am again feeling ill, there is no measurable fever, only a little yellow phlegm and a feeling of mild depression, malaise, light headedness, feeling hot and cold as well as a yellow discolored tongue. Every doctor denies that I have a persisting infection, except the homeopathic one who treated me, with temporary success. I might even describe myself as a hypochondriac, feeling scared and stressed of possible sources of infection since the events of the last two years. In my childhood I was rarely Ill, about once or twice a year and now I frequently have 4-7 day periods of feeling unwell, and every now and then serious illnesses such as pneumonia. I’m 19, attending university in Florida and I’m afraid that this will have a severe impact on my future adult life. A psychosomatic doctor even diagnosed me with “suspicion of personality disorder, namely recurring, currently repressed, depression” which is, excuse my French, bullshit. I feel a little helpless, but I’m not willing to give up and I want to improve my ok-mediocre quality of life before it gets worse and turns into CFS!

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My 24 year old son was diagnosed with strep throat 8 months ago and has been left with extreme fatigue that never goes away. About a month after the strep diagnosis we had him checked for the Epstein Barr syndrome and he tested positive to a recent virus. We now think he had mono not strep. We are at our wits end with what to do to help him. Looking for any help or even some one to comparison symptoms with.

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@lynnieb1

My 24 year old son was diagnosed with strep throat 8 months ago and has been left with extreme fatigue that never goes away. About a month after the strep diagnosis we had him checked for the Epstein Barr syndrome and he tested positive to a recent virus. We now think he had mono not strep. We are at our wits end with what to do to help him. Looking for any help or even some one to comparison symptoms with.

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Sorry to hear about your son. Both my daughter and I were diagnosed with EBV about six years ago. She struggled but did complete her doctorate degree. I continued working, but had to finally retire four years early in 2014. I’m convinced EBV caused me to need a pacemaker and infected other organs of my body. However, with lots of doctor visits and numerous treatments, I’m now able to participate in more family activities. This illness is very much a management issue. If you haven’t read the Spoon Theory yet, google it and you’ll get a better understanding about how your son feels. My daughter works full time but is exhausted. She spends at least one day of the weekend sleeping although she gets 8-10 hours a night during the week. I sleep 8-13 hours a night and sometimes take naps during the day. We both take prescribed stimulants to keep us functioning during the day. My lifestyle had to change drastically because retirement fixed income and my stamina to do anything physical is so low. However, I have improved greatly these past three years. I went to Mayo Clinic in August. Although they don’t recognize EBV as a chronic condition, they were able to rule out many other previously diagnoses and took me off most of my prescriptions. I highly recommend going to Mayo in Rochester. They won’t stop searching for answers until they have found them.

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So you and your daughter continue to be sick after 6 years? This is devastating, drs keep telling us he should fully recover? My son works a full time job and sleeps after work then also sleeps or lays around most of the week-ends. He’s only 24!

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Mayo says it’s not a chronic virus. However, another doctor in Texas says research shows otherwise. Idk. Looking back, I’ve had these symptoms for 15+ years but was never diagnosed. I finally had to retire early because I would sleep all weekend and then make it to work Monday and Tuesday and maybe half day on Wednesday. Then I’d start all over after sleeping Thursday, Friday, Saturday, and Sunday. Mayo dismissed many diagnoses and I am feeling better, but it’s a total management thing. My daughter is better than me. Doctor says it’s because of the age. I wish your son the best. I highly recommend a visit to Mayo! I’d be glad to talk with you more about our symptoms and various treatments we have tried.

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I got mono when I was 19. Horribly sick for 3 months. It cleared up, didnt have a problem until my late 30’s. 7-8 yrs of Chronic Fatigue, following a depressive episode. After typical experience of many doctor visits with no diagnosis, and normal blood work I finally found a doctor that was able to treat me. The treatment was 2 months of amphotericin b in capsule form from a compounding pharmacy in tandem with 2 months of the candida diet. Did wonders, 2years now of feeling good, I had one , three week flair up a couple of months ago and returned to the strict version of candida diet, followed with oregano oil and olive leaf extract. Not 100percent but a lot better. Now, last 3 years I have been getting some episodes of vertigo, I have read that EBV flair ups can cause this, among other things. The good news is the last three years more doctors are aware of cfs and fibro, and more treatments are available. Stanford has a team working on this, they are treating it as a pathogen with anti viral/ anti inflammatory cocktails, similar to HIV approach. I think, personally, EBV, POX , HERPES 1 & 2 are responsible for these autoimmune diseases. If you keep your immune system in tip top shape and treat with anti virals I think there is hope. You need a doctor that is well versed in these ailments and new treatments, the others will have no answers.

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@paljoey

I got mono when I was 19. Horribly sick for 3 months. It cleared up, didnt have a problem until my late 30’s. 7-8 yrs of Chronic Fatigue, following a depressive episode. After typical experience of many doctor visits with no diagnosis, and normal blood work I finally found a doctor that was able to treat me. The treatment was 2 months of amphotericin b in capsule form from a compounding pharmacy in tandem with 2 months of the candida diet. Did wonders, 2years now of feeling good, I had one , three week flair up a couple of months ago and returned to the strict version of candida diet, followed with oregano oil and olive leaf extract. Not 100percent but a lot better. Now, last 3 years I have been getting some episodes of vertigo, I have read that EBV flair ups can cause this, among other things. The good news is the last three years more doctors are aware of cfs and fibro, and more treatments are available. Stanford has a team working on this, they are treating it as a pathogen with anti viral/ anti inflammatory cocktails, similar to HIV approach. I think, personally, EBV, POX , HERPES 1 & 2 are responsible for these autoimmune diseases. If you keep your immune system in tip top shape and treat with anti virals I think there is hope. You need a doctor that is well versed in these ailments and new treatments, the others will have no answers.

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Thank you so much for your response. I have read a lot of success stories with extreme diet change and the herbs you mentioned. Also read a lot about adding raw apple cider vinegar as a way to kill this and neutralize ones system. Did you start feeling better pretty soon after you completed the 2 month treatment? How many years have you been feeling relatively normal?

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@cummings3 is your son still sick ?

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Yes, we just had to go withdraw him from college and bring him back home. Mayo clinic has denied seeing him twice, so now we are seeing a Neurologist and infectious disease doctor where we live. The fatigue is debilitating him at this point of his life at 18 yrs. old.

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@cummings3, my son is 24 and works full time and lives in a different city. I keep feeling like if he lived at home I could cure him cuz I know he doesn’t try everything possible to cure himself. Have you tried the candida diet and the herb treatments? My son said no way he could be in college with this but he is able to do his desk job then come home and sleep. He is living half a life for now.

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Yes, It’s horrible to watch your young son not being able to live a normal life with normal activities. We have been so frustrated trying to find answers and Doctors who just say “we don’t see patients with EBV”! We were just referred to the Simms Murphy Clinic in Memphis, TN…. along with another Infectious Disease Doctor who did not put that label on him and starting fresh with my son on testing and research. The Neurologist at the Simms Murphy Clinic brought my son in and immediately did some testing on his autonomic nervous system, because of all his chronic symptoms with headaches, extreme fatigue, stomach aches, lightheadedness and muscle weakness. After this test was done, she determined that the EBV has caused damage to his autonomic system which controls blood flow to the heart and brain. She has put him on midodrine 5mg 3x a day and Alpha Lipoic Acid 200mg 3x a day for 6 weeks and then he returns to evaluate. She’s treated other patients with the EBV and specializes in the Autonomic Nervous System being a main factor of issues with all of these symptoms due to the damage that the EBV causes. I will keep you informed on the outcome. My son just started the medication yesterday and has a follow up appointment on December 27th. We are praying that this helps him and reverses the damage done! His Infectious Disease Doctor is gathering all of his past tests and information, before he begins his study on my son, so that will be interesting to see what transpires there. They want to make sure that no other issue is being missed beside the EBV. I pray for you son and no how hard it is for them to not be at home with you when they are dealing with this illness.

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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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