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.

@chen16

Hello. I have EBV but not sure if its Chronic. Been to several specialists and the chronic fatigue seems to be autoimmune related but can never get a definite diagnosis. Blood results are always inconclusive. Can a person have multiple viruses? I don't think that EBV is the primary cause of my symptoms but would sure like to know what is. I have a swollen face that looks like a bad sunburn, it never goes away. WhatevercI have, i pass to another person.i can't share anything , not sure if its the EBV or something else. Any advice would be much appreciated.

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I forgot to mention my heart rate is high as is the lower number in my blood pressure

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This site unfortunately is a forum of people sharing information with as of yet no solid answers as to a cure for the Epstein Barr virus. I would think that yes you can have more than one virus. The swollen face issue is not one that I have heard of as a symptom of EBV but swollen glands in neck and all other gland areas are. I constantly have swollen glands through out my body. It is great that you have found several specialists! So many of us can't find anyone who is knowledgeable on EBV. I have found a wonderful Naturopath MD. She had me do several blood and other tests and has prescribed both natural supplements and prescription meds. Unfortunately none have helped much at all so far but I am not giving up. My main symptoms are swollen glands and chronic fatigue. I have very low levels of Cortisol so tried taking Hydrocortisone but it had too many side affects to make it worth it for me personally. Reading the Medical Medium's book Thyroid Healing has been great. The entire book is about EBV and how eating properly can rid the virus but the diet he prescribes is pretty hard to do. I try really hard to follow it but do eat meat. Good luck and please share anything you may find to help get your EBV levels back to normal. My numbers are super high all the time.

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@cummings3

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.

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@cummings3 and @melissavaughn Have any of your providers considered a type of atypical anaphylaxis? Low blood pressure, headaches, etc can all be symptoms. Go to
emedicine.medscape and look up article 135065. It won’t let me post link here.

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@nacc

I was diagnosed with a new infection of EBV at the age of 61> I got sick in Aug. 2017. I'm so fatigued I can't live my life like I used to. I'm in pain all over
but try not to let it get me down. I don't tell people anymore because they don't understand what I am going through. I have been doing research too. Keep
trying to get help. Keep going to doctor's until you find one that will listen to you. I think I am experiencing the after effects of EBV, and that it was a new infection at my age it messed up my whole body. I follow the MM website, and do follow some of the protocols. I don't eat unhealthy foods. Hope someone can explain this weird virus to us. I'm trying Rhodiola, that I bought at Whole Foods. It promotes energy and resistance to stress. I also take magnesium at night and melatonin at night to help me sleep. Stay in touch. Thanks.

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What’s the MM websites, please?

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@nacc

Had new infection of EBV. Now have been diagnosed with chronic fatigue and fibromyalgia. Started aquatic therapy to get some strength back. Learning to live with this. It's all new to me. Good luck to all of you with a chronic illness.

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Just diagnosed with reactivated EBV, quite frankly, I’m terrified. I’ve missed a lot of work since April, finally diagnosed June 1st but it seems to be irritating my boss even though I have Oregon Medical Leave Act (no money, just protection for my job which pays nothing when I’m home sick) and full support from my PCP. I’m 59, single and disability would pay $798 a month. I cannot envision a future that works. I’m thankful to find this forum, all advice welcomed!

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@nacc

Had new infection of EBV. Now have been diagnosed with chronic fatigue and fibromyalgia. Started aquatic therapy to get some strength back. Learning to live with this. It's all new to me. Good luck to all of you with a chronic illness.

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I am 61 and have had Chronic Epstein Barr Virus for 7 years. I do go through long periods of time where I feel fine so try to keep positive. How long have you had your symptoms and since people experience many different symptoms… What are your main ones causing you to not be able to work?

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@lauraeinga

My husband developed CAEBV about a year ago and we've been trying to get in to see an ID Doc for almost a year. I have a feeling its a waste of time though because we don't have the best and brightest in my town. there is very little information and research on this virus in the medical literature, unfortunately, BUT they are looking for candidates for studies. I'm discussing that possibility with my husband. in the meantime ANY helpful strategies to deal with this debilitating illness is greatly appreciated!

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Hello- My son has been dealing with CAEBV for over 2 years and had to be medically withdrawn from his University this past fall, due to chronic illnesses and re-activation. He has gone to Infectious Disease and Immunology Doctor with no help. Our Internist referred him to a Neurologist that specialized only in the Autonomic Nervous System. After she performed a ANSAR test on him, she determined that the EBV has done significant damage to his Nervous System causing all of his horrible symptoms (Migraines, Chronic Fatigue, Chronic stomach aches, Blood pressure and Heart rate issues, Blood flow and clotting issues,dehydration,Insomnia, brain fog, etc) She has put him on Alpha Lipoic Acid (a natural supplement) that is slowly reversing the damage to his cells and healing his body. He is also on a few other meds to control some of the other symptoms while his body is repairing itself. He is slowly coming off of those, but will stay on the ALA long term. He goes for follow up testing every 6 weeks and the last two tests have shown significant improvement with his heart rate and BP issues… his migraines have almost dimensioned and his stomach issues are much better. His energy level has gotten better, but still is struggling with Insomnia at times. He has enrolled back in college for the fall.

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@lauraeinga

My husband developed CAEBV about a year ago and we've been trying to get in to see an ID Doc for almost a year. I have a feeling its a waste of time though because we don't have the best and brightest in my town. there is very little information and research on this virus in the medical literature, unfortunately, BUT they are looking for candidates for studies. I'm discussing that possibility with my husband. in the meantime ANY helpful strategies to deal with this debilitating illness is greatly appreciated!

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Cummings3 – You have submitted so much great information thank you. I feel so bad for your son's struggles. I am going to ask my NMD about the Alpha Lipoic Acid. I am about to try an antibiotic viral – one that is used for shingles and other issues. I have heard they don't work for CAEBV but my NMD has had some luck with it in other patients. Has your son tried any anti virals? Also, what does ALA do to alleve the virus? Thank you.

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Both of my sons were diagnosed with CEBV and CFS/ME. It permanently changed the paths of their lives. The sadness is beyond words. I'm thankful to have found this group that have been through the same life altering issues. One thing I would like to mention to each of you suffering from this debilitating illness is the possibility of Lyme Disease and co-infections. It mimics symptoms so closely that my son has gone undiagnosed properly for years. While he has been 100% positive for EBV with back to back recurrences along with other infections like many of you, he now is still dealing with the virus on top of Lyme and several co-infections. I now know why he was never improving. Instead, he has gotten far worse.
I'm mentioning this because it may help someone or save someone from further suffering if by chance they too, have more than EBV. The standard testing is highly inaccurate and it caused years of life to be lost. There is still a long road ahead. Igenex Lab finally was the far more accurate test and it has helped many people. The EBV and Bartonella were positive. Others were borderline and yet he had every symptom. If you look up Lyme Disease and find information showing that you may have symptoms, please refer to the ILADS website for detailed information and find a LLMD ( Lyme Literate Medical Doctor). Also, if you or your loved one tests negative per the most accurate lab testing and you need a doctor specializing in CFS/ME, there is a website entitled CFIDS that will also help you to find a doctor that actually understands CEBV and CFS/ME that WILL listen and help! These illnesses both can damage the organs and the autonomic nervous system as well. That is a fact. Joint pain, memory issues, sudden drops in blood pressure with a high pulse rate happen. Spleen, liver, pancreatic inflammation can occur. Seeking a physician trained in specifically these illnesses is your best bet! I've found infectious disease practitioners that do not at all understand either one if they have not been formally educated with CME in Lyme Disease or CFS/ME. There are pediatric and adult doctors that treat both and they are MD's. I hope this helps someone. Keep hope and know you are not alone and no one asks for nor deserves to suffer any of these illnesses. Both of my sons missed their highschool memories and so much more. Thank you to all who have shared such great information here. I've learned a great deal. Blessings and wishes for restored health and peace to all!

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@nacc

I was diagnosed with a new infection of EBV at the age of 61> I got sick in Aug. 2017. I'm so fatigued I can't live my life like I used to. I'm in pain all over
but try not to let it get me down. I don't tell people anymore because they don't understand what I am going through. I have been doing research too. Keep
trying to get help. Keep going to doctor's until you find one that will listen to you. I think I am experiencing the after effects of EBV, and that it was a new infection at my age it messed up my whole body. I follow the MM website, and do follow some of the protocols. I don't eat unhealthy foods. Hope someone can explain this weird virus to us. I'm trying Rhodiola, that I bought at Whole Foods. It promotes energy and resistance to stress. I also take magnesium at night and melatonin at night to help me sleep. Stay in touch. Thanks.

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Check the CFIDS website for information. Cures A to Z is also a great app that is a fantastic resource by a specialist. It offers treatment options and suggestions. Also visit the ILADS website to be sure it's only EBV and not Lyme Disease as well.

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Please see my post. Hope it helps. You tube has excellent factual presentations by CFS/ME doctors including some from John's Hopkins. Southern Tier Lyme Support has also posted some excellent videos to educate about Lyme facts. EBV can be a co-infection.

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Thank you justamom for the excellent information. I am sorry your family has had to go through these struggles. I will visit those sites you posted, this week for sure! Have your 2 sons gotten better through the specialists you have found? If so, which symptoms have gotten better? Have they tried anti viral medication? I have just started taking Acylovir which is something prescribed for shingles but has worked on some CAEBV patients.

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