EBV ruining my life

Hello, I know this is an older post, but I'm currently experiencing similar symptoms as you described. For me, it started back in June 2024, I fainted at work, felt like my entire body was a solid brick and on fire, could barely talk I was so spaced out and was sent to the ER and discharged that day with a normal heart rate and pulse, no viruses found then. In January this year, I had another attack and tested positive for mono and Covid. I've been having scary flareups that manifest as burning, prickling face, painful stuffy ears with high-pitched tinnitus, debilitating brain fog when I exert energy or if I don't sleep well, etc. My immunologist ordered blood work for allergies plus a tryptase lab test. They told me my tryptase (histamine) was high and they put me on Pepcid and Allegra twice a day. It hasn't really helped much, but I'm hoping it just takes time. I feel like it's possible I have a combination of mono relapse, ME/CFS, MCAS (mast cell activation syndrome), and long Covid, but I don't have a current diagnosis just yet. I did notice my thyroid antibodies were high, but there were no signs of any autoimmune presence.

I wasn't sure if you'd ever heard of MCAS before, but after testing positive for it, I wonder if that's not part of what happened to me. I think it's also linked to gut biome disorders like IBS too. My face turns red hot, not like a rash or anything, but it turns red around my cheeks, my eyes start to water, I have excruciating anxiety, sniffing like I did when I had Covid, and I have extreme pain and syncope if it gets bad enough during a flareup, plus my throat turns red and starts to get sore again. I used to enjoy running, but I had to cut it out a year ago because my symptoms got so bad during workouts that I can barely leave my home anymore. Hope you feel better now, I'm still in the middle of ruling out possibilities myself, so I thought I'd just drop this reply if it helps.

What you wrote is very informative. Over 30 years ago in N.Y.C a doctor diagnosed with Epstein Barr and laughed on my face and stated that every person in N. Y. has Epstein Barr. He refused to deal with it or treat it and that was the end of it. I did never see him again. In general I just didn't like him. I felt he should not even be a doctor. Anyway, I have multiple medical conditions including at least 4 auto immune diseases as well as other other medical conditions. So my fatigue I believe is coming from more than one medical care ndirion not just Epstein Barr Virus.
I found the your drink combination about celery very interesting. I would try except first of all I hate the taste of celery and second I have other conditions that cause chronic fatigue. But I am really glad it works for you. I also found it interesting about the cysts. Many years ago cysts got abnormally large in both my ovaries. So much so, that my GYN told me that he would only wait a certain amount of time to see if they would shrink if not he would have to do a hysterectomy. He feared that my cysts could twist and open and I would die. Luckily at my next visit the cysts had gotten smaller and I didn't need the hysterectomy. I still wanted to have children at that time. So I was lucky. And yes I had fibroids too and still have a few but not as many as before, maybe because I am older now.

But I live my life with chronic pain all over my body as well due to other conditions, and am awaiting spinal surgery for a second time. So I have my hands full. I just take one day at a time. I am not permitted to take vitamin C per my doctor. It interferes with the absorption of some medicine I am taking. So you have to be careful telling recommending vitamin C to people. They need to find out from their doctors based on it they are taking any medicines. There are foods that I cannot eat, and things that I cannot drink, and I cannot drink alcohol, or smoke, because of different medicines that I am on. I cannot have alcohol because of my medicines nor caffeine. There are restrictions Sometimes in people's lives. Make sure to tell people to discuss these things with their doctors.
Thank you for your information though. It was very informative. I wish you well.

Hi, I wish I had some good advice for you, but I am struggling too. I had my first appointment with an infectious disease doctor yesterday. My GP wanted me to go to Hopkins in Baltimore but they were not taking new patients so I found one in my town. It was terrible. I told him my vca, ebv IGg, and EARLY antigen ebv have all been steadily rising for over a year now. He said, well why do they keep testing it? I told him because I have been sick so often over the past year. He says that has nothing to do with ebv. I told him my doc now has diagnosed me with cfs and I get b12 shots, take multivitamins, Q10 with nadh, and methylphenid. I have a compromised immune thanks to autoimmune disease. I said my doc and I were concerned about CAEBV, and he actually asked ME what that was! I felt like he was arguing with me and dismissing my concerns. I got up and left while he was still talking, I have never done that before. What are we to do, when we can't even get the specialists to help?

Do you have long Covid?

The only thing that helped me was taking 3g of valacyclovir for 1.5 years and I still take 1g a day today. I show no active EBV and my EBNA dropped from >600 to below 300. I was fortunate it worked for me. I talked to someone else who said it didn't work for them.

@kjs1980 I'm on SSDI. I couldn't collect until I was not making money in 3 years. Document everything to show you can not work. Show all the Docs you saw and treatments and labs. It helps to get a lawyer. I get $1600 a month, which is beans but I do cash jobs like pet/house sitting, etc. I know you can make so much on SSDI around $1500 or so. I hope you feel better soon.

@susanrg20

My doctor suspects but never confirmed

@lissysgma
It’s so frustrating not knowing if it is.

In addition to everything else mentioned, I would address the PTSD. Autoimmune disorders and things like Chronic EBV are common in people who have childhood trauma and PTSD. Your nervous system in distress can cause a flare up and cause you to remain in a flare up. I believe addressing the trauma can help your central nervous system and your default/trauma brain patterns to change and therefore allow your body to heal. The problem with PTSD and trauma is you’re often in fight or flight mode. This can cause adrenal fatigue, thyroid issues, and EBV reactivation/flare ups. I have been in my most recent flare up for 3 years now. Ketamine infusion therapy was immensely helpful for me releasing repressed memories and helping me heal from trauma. I was able to be off antidepressants since then and I don’t have panic attacks anymore. I’m still working on my stress and calming my nervous system, which again I believe is partly responsible for Chronic EBV/flare ups. I had tried all of the viral protocols and supplements you can think of. The only thing that has helped me over the years (two big long flare ups now since being diagnosed 20 years ago) is time and listening to my body, addressing super low levels of testosterone (I’m a woman and low T is something that women suffer from all the time and it is under diagnosed), and stress management through processing and adressing trauma. Ketamine infusion therapy is pricey, but if you can ask for help financially with family or something it was life changing for me. Look into Psilocybin therapy as well. Similar treatment. Also expensive unfortunately. Medicaid usually covers EMDR therapy, which is another very proven successful trauma or PTSD therapy. It can be a harder on your body because you can sort of become re-traumatized through the revisiting of the traumas vs Ketamine and Psilocybin therapy because you’re processing trauma in a disassociated state with those. I am no professional, so definitely do your research. Just sharing my own experiences here. Also, praying for you now. I’m so sorry you’re going through this.