My EBV Story: Any one else similar?

one more question,sry you are only one active...how did you feel that light sensitivity,did it make you see blurred,unconfored or how?

I also have been experiencing some blurry vision often on. The worst for me though is the muscle twitching in my legs sometimes in my upper extremities. It doesn’t happen all the time especially when I’m moving it is mainly at rest. I pray to God that this gets fixed soon. My Epstein-Barr levels were through the roof with the two indicators that it is reactivated. The BFS page on Reddit is very informative as well. I hope you are all doing well. One day at a time friends!I also have been experiencing some blurry vision often on. The worst for me though is the muscle twitching in my legs sometimes in my upper extremities. It doesn’t happen all the time especially when I’m moving it is mainly at rest. I pray to God that this gets fixed soon. My Epstein-Barr levels were through the roof with the two indicators that it is reactivated. The BFS page on Reddit is very informative as well. I hope you are all doing well. One day at a time friends!

Hello,

I'm looking for advise. To say I've been struggling would be an understatement.Early Feb. 2020 I had 103 fever with a 3-4 week respiratory infection. My wife and I went to Costa Rica for a week in early March 2020. Within a week of us returning home, the muscle in my right forearm started twitching. Within 2 weeks the left forearm started twitching. Within a month it went to my right leg. Its in every muscle in my body now. I now have severe muscle fatigue with difficulty lifting things. I also struggle to breath and Ive been losing my voice regularly. My muscles are constantly sore. There is a lot of tingling. Parts of my body feel like a heating pad is on it. I'm constantly looking at my skin because it feels like something is crawling on it like an insect. My muscles are stiff, I get headaches and have trouble sleeping. I have been extremely emotional through this process of finding answers with very little luck. I have had 5 MRI's, 3 EMG's, sonograms, x-rays, lumbar punctures. I'm a 1 year and 5 months into this nightmare. I have tested negative for all of the neurological stuff like ALS,MS, Isaac Syndrome, all of the auto immune disorders that affect the muscle or nerves. The only thing I have test Positive for is EBV back in June of 2020. Can this be causing all of these issues. I have 4 young children, I'm the only one the brings an income into the house so I have to continue to work but its extremely hard. Half of my friends and family think its in my head because I look normal. I have lost about 30 pounds from the start of this due to all of the anxiety and stress this has put on me. Can all of this be related to EPV or could it be something else like Lyme disease? I've tested negative for ALS 3 times.

Hi,

I have had some similar issues. In around May 2021, I started to notice that my right eye seemed to be drooping a bit. No one else could see it, but it just didnt seem right to me. I had a ct scan that was normal in late June. By July, I had so much pressure that I left work crying on multiple occasions. I went to an urgent care and was diagnosed with a sinus infection. I later found a pcp and was treated with two weeks of antibiotics for a fungal sinus infection. When I started the meds, I almost immediately had postnasal drip that was very white and foul smelling. After this round, I was sent to two different ENTs and had another clear ct scan with no sinus infection. At one point, my right eye suddenly started watering so terribly that it woke me up. I went to the eye dr three times. Despite the red, bloodshot eye, dr said it was just dry eyes. A sharp pain then developed on the right side of my face and my face started to go numb at random times. I also have muscle spasms throughout my body. I have went to the ER 3 times with a HR of 150. Ii have been cleared by an allergist and have 0 allergies. Since this has started, I have lost 18 pounds. I have basically laid in bed for months other than going to work. I have had chest xrays showing nothing abnormal too. Recently, my lips have been randomly going numb. The only thing I have tested positive for are EBV antibodies. Prior to this, I was healthy and active. Via my google research, it all seems consistent with mono. I have even been checked for lupus. All of these started these past few months and we still havent figured it out. I feel like I am slowly getting better, but continue to have random spells of my face going numb or eye issues with no apparent triggers.

yes all the same! been miserable for a few months! the muscle twitching scares me to death. Going to get a MRI to rule some things out, but the anxiety is over the top. how are you feeling now?

yes all the same! been miserable for a few months! the muscle twitching scares me to death. Going to get a MRI to rule some things out, but the anxiety is over the top. how are you feeling now?

i have been going through this for about 10 months. It tore me up. i had POTS symptoms, lost 30 pounds, tingling/shocks in my hands and feet. I had muscle twitches and facilitations in my arms, legs, and even my face. I couldnt feel the bottom of my feet for a couple of months when i walked and ive felt off balance the whole time. Ive had constant tremors or viabrations in my lower back that gets worse at night. I lost my ability to play the piano. I couldnt even sit up straight or i would feel sick. I was fit before but now couldnt do a situp and couldnt lift my head up when lying down for more than 20 seconds( I can do 2 minutes now). I went to the neurologist and i passed all the tests. I finally got a EBV positive test 4 months in. I started taking a homeopathic specifically for EBV and I could tell immediate difference. Im still having some trouble with my hands because they lost alot of muscle. I'm able to play the piano again. It still feels strange to grab things. I feel there is some weakness left in my hands and feet. This virus is evil. I thought i was going to die for months before i turned a corner. Googling my symptoms was a bad idea but i did it to try to find things i could do myself that would help. That made my anxiety worse.

how ate you feeling now? did the twitching go away? Ive had this same thing a month now, please lmk how things turned out

ive felt like this on and off for 4 years and like you gone to work every day to keep life going. The main thing i get now is muscle pain after a hard day at work. Keep going mate

how are you now, did this resolve?