My EBV Story: Any one else similar?

Im at 6 months, 36 years old & my second time Ive had it. First time I was 22 & it was pretty much nothing compared to this time. My symptoms are a lot like yours w/o the cough & chest tingling. The muscle twitches are also at times nonstop. My off balance/lightheaded usually eases up when I sit down. In July it was so bad I couldnt drive for about 6 weeks. It has gotten better but Ive hit a plateau where its not changing much the past 2 months. My left leg & left hand are weaker than my right, not sure if this is typical or not. As far as vitamins I take vitamin b, c, d, mct oil for brain fog, probiotic, milk thistle, stress guard, cbd oil & some others, not sure if they help or not.

Hi TX,

Yes-I also had a bunch of neuro symptoms as have many people in this group. One month I was 100% convinced I had MS and the next month I was 100% convinced I had ALS. A year into this and it's pretty obvious I don't have either. I too met with a neurologist though.

I do take vitamins and still have random symptoms and will feel very fatigued if I get run down. I take vitamin c, vitamin d3, vitamin b12 and probiotics.

yes i had tingling in left leg and many other weird symptoms . i dont know how you are working with this ive been in bed for 20 months !

i did ozone blood therapy helped but not cured ..done all the vitamins and have always eaten healthy mostly vegetarian . its only time and rest that cures . 2 years they say for full recovery .

Hey, just to give you some encouraging words: I recognize a lot of symptoms and I was also struggling and having anxiety about it. For me, around the 6-7 month mark, things were changing. I felt a bit better, and I feel like I am healing slowly but surely. Yes, it might take a while, but you will get better eventually. I made the conscious decision to call in sick at work for a while, and to have delay with my master's degree, just to have more time available to rest and get better. This really helped me. Also, please try to stop looking for symptoms and diagnosing yourself on Google, I noticed that it really counters progress in my health. The chances are big that it is EBV, so try to believe this and not worry too much. You will be okay.

i got this virus and all of the symptoms you've mentioned in march 2018. i still suffer with the fatigue, dizziness and anxiety a lot. My glandular fever triggered a panic disorder which made things harder.

it does get better even when you think it wont. Its hard constantly feeling like you're swamped with a serious illness and after constant tests you are on paper "fine".

just hang in there and know what you're experiencing has happened to others and have eventually seen the light at the end of the tunnel.

I also crashed emotionally, physically, financially. Honestly. it was a blessing in disguise. I was gloomy but more emotionally honest than I've ever been in my whole life. I couldn't continue to work full time and thank God for child support. But I am no longer working a job I hate that doesn't care about my health and I finally started to heal with less work demands.

My suggestion is FMLA if at all possible. Please, please take care of yourself or you can really hurt yourself. This illness taught me boundaries, self care and sacrifice in ways no therapy has. I wish you luck and yes, facial twitching, skin sensitivity, balding as a woman, swollen neck, limping from joint stiffness. Thank God for CBD oil and the AIP diet. Private message me if you have any questions.

hey, im so sorry you are going through all of this, I know from personal experience that it is extremely stressful and just horrible in so many ways, physically and mentally. I got mono in April, and got a really severe case and got numerous other throat infections such as uvulitis (which is extremely rare), adenoiditis, and oral thrush. All of this literally gave me nerve damage where I had my uvulitis infection, and since then I have been dealing with horrible nerve pain thats honestly been so miserable to live with. I feel like the mono has taken away a part of me that I wont get back unless this pain goes away. The neurological effects of mono go unnoticed by the medical community and its honestly depressing how many doctors arent aware of ALL the adverse effects of mono. You are definitely not alone and again I am really sorry you are experiencing this living nightmare. I can only hope and pray that our nervous system can heal from this virus and we can go back to our old lives... In the meantime, try to get a lot of sleep and live as healthy as a lifestyle as possible, your body needs all the help it can get to heal. Also distraction is great if you can find something to take your mind off of the pain... Recently I have been looking into the positive effects of low dose ketamine for neuropathic pain and im interested in bringing it up to my doctor. Who knows what can help Anways, praying for you and I hope you can still have a Merry Christmas.

HI there, I totally understand you. My symptoms started this Sep and the hell short after 😦 Never had so many medical examinations in my life, little results, anxiety and edge of depression and bouncing back from different doctors saying from the results I should be feeling fine until I heard two months latter that this could be in fact mononucleosis... Two months of constant night sweats made me nearly a wreck. However, I didn't give up. I got prescribed injections of vitamin B, which helped for fatigue to some extent. I take vitamin D.

I think important in my case was to limit stress as much as possible, positive attitude and patience, which is not that easy having mononucleosis symptoms. Also it is good to switch thinking to a hobby instead of thinking about mononucleosis all the time. My GP told me to stop reading the internet and translate each symptom, which eventually I did. I wish you a good health !!! Take care.

Hi Worrier,

I understand just how you feel, I contracted the virus in late 2016, I am now recovered, but still have mild symptoms if I over do it or have an illness.

I had the leg weakness too as well as a feeling I would describe as internal shakiness as well as feeling all over weak, sick and anxious. The first six months are the worst and the next six months are a little better.

You will recover, rest as much as you can. I used monolaurin, green tea and vitamin D. I believe this helped.

I too am just starting to experiment this and was about to go to neuro.

I am having really M ad anxiety and all the sympathy you all mentioned.

I am so tired. feels like my arms are tingling on fire..

what to.do..for comfort.

I just started taking Banju.for nervousness it will help.. how do we consume coconut oil. in drink??

yep, all that took a couple of years to get over. Still have weird stuff from time to time but it's short lived. The sooner you stop letting it freak you out the sooner it goes away. Having gone through it myself in my late 30s that's my experience is that it's just as much mental as it is physical. It sucks but try to make the best of it, it sucked but it changed my life for the better.