My EBV Story: Any one else similar?

Ears, nose and throat
1

Hello. I started having weird symptoms early august, with weird off balance issues, weakness in legs and leg muscles, went from one leg to the other, followed by arm weakness, nerve pain, weird vision issues, head aches, stiff muscles, joints, tingling, twitching all over body wide, the twitching can be non stop at times, chest tingling, night sweats, cough, dry eyes in morning, facial muscles weakness, sore jaw, sore throat, swollen lymph nodes. I mean you name it. My nervous system has felt like its been a wreck for 4.5 months.

Ive been through the ringer for neuro exams, MS, ALS, EEG, EKG, EMG and Nerve Test, MRI’s, CTS of my brain, CT of my chest and pelvic region, spent thousands of dollars, only thing that has been positive so far is EBV blood test. Literally thats it. The twitching is what set off my severe anxiety though, thats what set off my severe anxiety about ALS. This made me a wreck, started losing weight, not eating, slowly not interacting with my wife and kids, the fatigue, pain, weakness, all of its so debilitating. Not to mention i have to still work a full time job because i have a family to provide for. How are some of you coping? I’m 4.5 months in and i don’t even recognize myself, my personality is not the same. Outside of my PCP saying just much rest, it could be CFS, what are some of you doing to treat? Just vitamins and eating better? Does anyone have a story like mine with nerve/neuro symptoms? I cant do a year or two of this, im struggling at 4.5 months.

2

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.

3

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.

4

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 .

5

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.

6

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.

7

yes i got ebv 12 years ago but no mono and now again month 21 with mono . my panic disorder started 12 years ago and never went away .

8

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.

9

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.

10

thank you for your reply, my left leg and left side is weaker than right as well. My left left and knee and calves on both legs twitch constantly. Its scary. I get weekly vitamin b shots and ive found in a month i dont see a difference. I take a daily multi as well. Someone mentioned coconut oil has been helping them so im trying that as well.

11

wow im deeply sad youve been in bed for so long. That is horrible, i am so sorry. I want to just lay in bed but i cant for the sake of my kids and family. I am physically completely broken down, but mentally i have to keep pushing. Even more so with my stress and extreme anxiety.

12

HI there, I totally understand you. My symptoms started this Sep and the hell short after :frowning: 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.

13

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.

14

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??

15

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.

16

I had mono last yr. It took months to recover only to have a reoccurrence again this yr. I have no energy body aches & foggy brain. I’m taking vitamins along with gabapentin. Has anyone else had reoccurrences? All the Dr’s tell me is to get lots of rest & give it time. I am at my wits end.

17

hey im 28 i am around month 8 this virus is literaly the worse thing i have ever had in my entire life i dont even now how i got it! The past 3 months i have felt way better this past month human again however i cant knock this breathing issue, neck pain and stuff neck ,and nerve issues i feel do weak always and for a while around month 5 i got really bad racing heart and blood pressure was high from my body healing, god bless and thank you that that really subsided ! mono really helped me and God of course what else helped i too was thinking ng about cbd but scared when it comes to the job and everything what did it do ? how did it help?

18

Hi theworriertx,

I feel like I’m just repeating what everyone else said here, but honestly the more people there are to share similar experiences the better! I didn’t know about this blog when my mono was at its worst and it really made me feel crazy having all these awful symptoms (that where changing weekly) that none of the medical people I was seeing could explain.

My biggest symptom has definitely been what we are calling ‘nerve pain’. For the first four months, I was having stabbing pains in my chest every day, as well as sharp shooting pains in my arms/hands, torso, and thighs. I went to an urgent care and got an EKG, which was normal, but I was convinced I had a heart condition or Guillain-Barré or something! I started on an anxiety med because, what with the illness combined with the Covid situation, I was so stressed and scared all the time. That helped me get more emotionally stable while the physical stuff was going on, so I’d recommend talking with your PCP about starting something like that.

I’m now eight months in and have experienced some definite improvement, even though I’m not back to how I was. I still have a sore throat and jaw, and nerve pain most days, but much less chest pain and the fever/night sweats and tingling hands are gone. It’s discouraging when some days you feel like you’ve gone right back to where you started but it really does start to gradually get better! This illness will not last forever, nor will the personality changes you’ve been feeling. It’s totally normal to not act like yourself when you’re in a crisis situation and constantly in pain. Try to have some grace with yourself, because this is truly a horribly frustrating and stressful illness, but you’re not alone in it! My only advice is to do anything you can to address the anxiety, which I think is one of the worst parts, drink a lot of water, and rest as much as you are able.

Emmanuelle

19

id lovd to speak with you directly

i literally have the exact same things going on

not sure if we can msg private on here

i am staying positive EBV is no joke and can wreak havok

hope and prayers you are getting better

20

i had covid in december

muscle twitches started very minimal in march and now off and on in my legs

thats the worst

had a normal emg and mri of brain

a friend was recently diagnosed w als and i am thinking covid w anxiety is what brought my ebv out with a vengence. hard time sleeping at night and been so stressed

Prayers for all of us affected