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EBV - Reactivation / Chronic EBV
Infectious Diseases | Last Active: Jun 21 11:51am | Replies (31)Comment receiving replies
Hi, new to this support lifeline.
Hoping there are other people who can shed light on how to live a normal life with this virus.
My son is 21 and has been chronic EBV reactive for at least two years. It has gotten worse this year. We recently did a bone marrow biopsy And thankfully, it came back with no cancer, but we still have the chronic EBV that is just ripping through his system on a daily basis.
He has multiple Symptoms on a daily basis in the evening his fever Spikes to 103 with cold chills. His appetite is a hit or miss every day. He has a persistent cough like he has bronchitis, but we know that his lymph nodes in his lungs are swollen and has been. He can’t work and is extremely tired most of the time. He has his good moments and then he has not so great moments, especially when he’s pale. Many times he turns white as a sheet.
His hemoglobin is in between 5.3 and I think the highest it has gotten Was 8.0. We’ve had multiple transfusions since March and two hospital stays. When he got the bone marrow biopsy last week, he ended up being sepsis come to find out. It was a surface bacteria that got into his system by way of the insertion of the Biopsy that One through us for a loop.
So basically this next week, we are going to see the oncologist again to see what his options are for the next step. I know that this virus cannot be killed, but something has to give on the symptoms.
Any suggestions or common Situations would be so helpful at this point. My son has no one to talk to that shares the same experience.
Replies to "Hi, new to this support lifeline. Hoping there are other people who can shed light on..."
Thank you for your response. We have been using some Eastern Medicine over the last few months, in the beginning a spleen detox was performed for 30 days, it shrunk the swelling and made him feel better, but the rest of the symptoms are a daily basis. We saw the oncologist yesterday, being the bone marrow biopsy was merely a week ago, although it showed no cancer, now they want to take out a lymph node. Still no medicine to help with symptoms, no guidance for how to manage this on a daily basis with western medicine. This is becoming very frustrating, Im beginning to think that these doctors have no clue how to treat this. Its like they just want to poke and prod. My son being 21, he is physically and emotionally exhausted. Is there any doctors in the united states that actually knows what they are doing? lol
It's a virus in the Herpes family and is difficult to treat. You should look up sites that have insight on how to treat chronic EBV. They have EBV diets and supplements that do help manage symptoms. I have found eating healthy food avoiding simple carbohydrates and adding supplements like Lysine, Beta Glucans, Olive Leaf Extract, Cats Claw, Licorice, Curcumin, Zinc, Vitamin D3 and at least 2000mg of Vitamin C daily helps build the immune system and can significantly improve combating it.
This is a difficult one. I have no personal experience to share, but I can tell you about a book that has useful information. It is called NATURE’S VIRUS KILLERS. It is available on Amazon. I have read it and used it during covid and for shingles.
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Research chronic EBV diet and get him on one, also EBV supplements help and increasing vitamin c intake.