Epstein Barr virus
Posted , 4 users are following.
hey everyone. i started off with a double ear infection in may 2023 that apparently never went away. i had a round of zpack and decadron shot. A month later i had another ear infection with augmentin. I developed a rash on my upper chest into my side burns into my hairline so i stopped the augmentin 5 days in. I had another decadron shot on iune 24th. On june 27th my legs started cramping really bad. Doc thought i was dehydrated so i had a bag of fluids. nothing helped. now im in week 4 of leg cramps and heavy knee feeling. 4 days ago i woke up with both arms feeling tingly and my forearms twitching making me feel like i cant hold anything. i have no idea what to do. im so stressed about having something wrong that im going crazy and i just want to cry as a 40 year old man. please somebody help me in this support group
0 likes, 6 replies
laurajade7 Starlord35
Edited
hello,
try not to panic! makes the symptoms so much worse trust me it made my mental health horrendous. have you been diagnosed with epstein barr? it sounds just like it, all the weird symptoms. i had this after my daughter was born and around the time i had the astra zeneca 1st covid jab.
i have the muscle twitching and the stiffness! had for over two years now but has improved and doesn't worry me now so much as all my neurology came back fine like nerve and muscle studies.
EBV gives so many weird scary symptoms i thought i was dying, had over 30 at least!
it gets easier but i can imagine how your feeling was the worst time of my life. was convinced neurology would say i was dying of some horrible disease. the anxiety that comes with it too!!
amin05697 laurajade7
Posted
Hi Laura!
May I ask you how you feel now? I noticed that you had mono more than 2 years ago. How long it took for you to see some noticeable progress?
I am almost 21 months into my mono, and still struggling with fatigue, and new symptoms that look like long covid. a year ago I was having quick progress, but then I resumed exercise and got worse over time. I think I have ruined my health.
laurajade7 amin05697
Edited
Hi,
i feel i have never got back to my normal self/stamina. i still get the aches. i think 18 x months in i noticed progress. i dint think you have ruined your health its just we get more fatigued than most with this EBV. long covid and chronic fatigue is all post viral same sort of thing. i found the mental health anxiety the worse as find it hard to accept i was totally normal one day and then stuck with this so long and noone knows a thing about it!
amin05697 laurajade7
Edited
I agree that the feeling of "not beeing myself" is the worst part of this illness. After all, with impaired memory and thinking ability and a lot of anxiety, how can I feel like myself.
The most debilitating part of this illness is that I have much less focus ( let alone that sitting at my desk for a few hours exhausts me. ), and my ADHD symptoms has worsened a lot. On bad days (or bad hours of the day), I can't even read a few lines of a book with focus. the only thing I can do is scrolling through social media and Instagram, YouTube, ... and only can do dumb things.
tdiama amin05697
Posted
hi
might I ask if you saw an infectious disease specialist? For me, its been one year now ans Im starting to get discouraged. are we supposed to live with this forever? does it ever go away ?
amin05697 tdiama
Posted
I saw an infectious disease specialist a few time in the first months. But my first blood test was 2 months after the onset, which wasn't conclusive about the exact root of my illness. It showed existence of CMV and EBV viruses antigen, but the type of antigen that appears way after the acute phase. So, it could had been that I first had contracted something like Covid (I didn't test for that) and that had reactivated other dormant viruses like EBC and CMV, or it could had been that I was directly infected by the EBV.
What so ever, it makes no different. When it goes to the phase of chronic fatigue, all post viral fatigues are like each other. Unfortunately, even most of infectious diseases specialist are not knowledgeable about this illness, and some of them (like mine) believe that patients are exaggerating, or suffering from some psychological issue like stress or depression.
I am not hopeless, because I have heard many recovery stories that had taken 2 years or more, and it is the natural prognosis of this illness (unlike what doctors say ).
However, your action play a crucial role here. You should know that exhaustion and exercise worsens this illness and can postpone your recovery. You should be highly disciplined in scheduling your daily activities and daily rest, knowing your energy limits and try to stay in that envelope.