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Epstein Barr Virus (EBV) Community
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Avatar universal

BODY TWITCHING

HAS ANYONE ON HERE THAT HAS BEEN DX'D WITH EBV HAD SEVERE BODY TWITCHING AT TIMES?  IF SO, WOULD LOVE TO HEAR FROM YOU!
24 Responses
Avatar universal
Hello Mercy,

I get body twitches all over. As a matter of fact, as I write this, I am twitching. I hate this symptom and I HATE EBV!!!!!!!!!!! Sorry, just venting!!!!!!!!!!!
Avatar universal

Twitching can be due to fibromyalgia, magnesium deficiency or MS. And of course it is common for fibromyalgia to overlap with CFS and vice versa.
523927 tn?1257018704
Viruses and bacterial infections can also get in your tissues and nerves, not just your blood. It could be possible to have a virus messing with your nerves and causing twitches. Taking some magnesium would be a good idea.
Avatar universal
i feel yor pain.. i got dx 20 yrs ago and up till 2 yrs ago  tried  rundown after working out softball ect    twitching  yep    muscle pain and numbness  yep   and they worked me for M.S  ect   only no lumbar pucture   waht was your EBV-VCA  IGG PANEL NUMBER MINE WAS 2197   really high   still  
Avatar universal
How can I determine if this is from a virus or bacterial infection.  I have questioned the fact myself and have gone to docs and got all bloodwork.  I am slightly anemic and my sed rate was about 10 points too high at one point last year but now sed rate is normal.  I started getting real sick last year which was a year after having and still having a vaginal type infection.  I have been checked for all STD's and urine cultures only for them to come up with nothing.  I acquired the infection after having a new partner and am worried this could be contributing to alot of my symptoms.  I do feel like something is attacking my nerves, heart, etc with severe twitches throughout body (even vagina) which made me wonder??  Any ideas on this or what else I might can do as far as testing?  How do they determine if a bacteria or virus is in your tissues or nerves?  Thank you for your reply.
Avatar universal
Do you think your twitching is due to the EBV?  If so, why?  what are some other symptoms you experience?  Have you been dx'd with anything else?  Do you have any recommendations for the twitching?  Do you ever get it in your heart as well?
Avatar universal
Hello,

I don't think they took a EBV IGG panel on me.  I don't recall anything like that .  I just know that an EBV test was taken and it came back positive or recently acquired back in 2003.  Is this test you are referring to something I need to look into having them take?  What kind of insight could this test give me that the other one did not?
591884 tn?1234201709
I, too, have muscle twitches that can become pretty severe at times.  Not sure if it is caused by EBV or not but I've had them since I've been sick with EBV.  
523927 tn?1257018704
Pathogens like viruses, bacteria, and mycoplasmas can be very hard to detect. There are only a few reliable labs that I hear mentioned and none of them are covered under normal insurance policies. Even then, you could still get a negative result if the pathogens are hiding out in your tissues, organs, or nerves. EBV is probably easier to pick up on because it must hang out in the bloodstream versus what some of the other pathogens can do. Unfortunately, there is no easy answer in getting tested for what could be ailing you.

I have been unsuccessful in my attempts to learn what I may be inflicted with other than high EBV titers. Nerves and tissues would have to be biopsied to check for pathogens and the pathologists would probably need some direction in what they are trying to find. Unless you have something failing or mutating, no doctor is probably going to agree that a biopsy is a good idea.

Professor Nicolson graced us with his knowledge awhile ago and these links show his answers to many people that suffer like us.
http://www.medhelp.org/posts/show/648144
http://www.medhelp.org/posts/show/655603
650547 tn?1271773198
Hi, I had pretty severe twitching a couple times since being dx with EBV, but I think it was mainly from anxiety/panic attacks.  I do have shaking/trembling sometimes, though, when I feel more tired than normal, and also a lot of mornings for like the first 1/2 hour or so after I wake up.
Avatar universal
Do any of you have tingling/buzzing sensations? I am having these very bad and they drive me crazy.
523927 tn?1257018704
I'm not sure I get the buzzing so much, but I'll get tingling once in awhile. EBV can get into your nerves from my understanding, so buzzing and tingling would make sense.
Avatar universal
Hi there,
I have not yet been diagnosed with Epstein Barr but they are running titers.  I have had the crazy twitches since June, turns out they are benign faciculations.  Check out the website aboutbfs.com
Avatar universal
I have buzzing, humming and clicking in my ears.  Where is your buzzing at??
Avatar universal
My buzzing is in my left foot. I get it in my right foot sometimes, but mostly in my left. The tingling is all over.
650547 tn?1271773198
I guess I don't have buzzing/tingling.  It's more just shakiness, or at least that's how I describe it.
Avatar universal
I have twitching in different areas of my body. Fortunately, it only lasts for 30s or so at a time. It never hurts per se, just a bit annoying.

By comparison, the pins/needdles, burning, tingling, buzzing, episodes are much longer lived and far more uncomfortable in my case. BTW, buzzing is in my calves by my foot. The extremities seems to be more common.
Avatar universal
Jason,

Your symptoms sound almost identical to mine.
810264 tn?1239170897
I too have EBV and severe body twitching... I have a couple questions... did the symptoms start with the onset of what seemed like a bad flu that you never recovered from if so were you taking broad spectrum anti-biotics for your infection with your new partner the same thing happend to me. Look into yeast overgrowth and candida testing Im currently researching this possibility. I have sporadic twitching mostly in my legs but also in my arms, abdomin, and alittle in my face I also suffer from what can be described as a foggy feeling in my head and the usual fatigue associated with this problem, I need at least 8 hrs of sleep when I do wake up it takes another 2 hrs to actually "wake up" and I drag through the rest of the day trying to function normally which is hit and miss, other possibilities ive researched is hhv6 (human herpes virus), I tested negative for this but ebv and this virus and symptoms go hand in hand a doctor at stanford medical has been doing clinical trials with a drug called vagilcyclovir with impressive results at both reducing ebv and hhv6 titer levels, im looking into dyflucan to treat yeast overgrowth and possible candida poisoning combined with strict no yeast/sugar diet thats been pioneered by a doctor im researching in LA
Avatar universal
Hi,

  I am seeing similar symptoms off late with a similar scenario as yours. all std tests are negative but something is attacking my nervous system and heart. Were you able to figure out what is the cause for your symptoms and how have you been doing recently with your symptoms? A reply from ou would be greatly helpful.

Thanks,
  KK
Avatar universal
Hi
I had twitching too but I realized through testing that I had active EBV but also my Kidneys were being affected.  DON'T WORRY...I have gotten rid of all my symptoms I will share what I did.
I suffered for 6 years with mono which include spleen pain, head aches, sore throat, CFS, even my kidneys and heart problems and more.  On Jan 1, 2016 I decided to do something new and it worked!  It took a couple of weeks for my kidney function  moved from 50% to 85% and my mono symptoms were gone.
I completely change my diet...I started eating and juicing raw fruits and vegetables.  THE KEY INGREDIENTS FOR THESE JUICES ARE ORGANIC LEMONS, TURMERIC and GINGER!  CHECK WITH YOUR DOCTOR FIRST TO SEE IF YOU ARE ALLERGIC TO THESE FRUIT AND ROOTS.
I got one of those bullet juicers and used a combination of ORGANIC:
    1) KALE, SPINACH, BANANA, GRAPES, KIWI AND OBVIOUSLY LEMON, TURMERIC AND GINGER.
     2) WATER MELLON, GRAPES, KIWI, LEMON, TURMERIC and GINGER.
I buy this organic foods at Whole foods and blend them and drink them three time a day...after a week my sore throat for SIX years was gone and also my SPLEEN PAIN.  ALL THE OTHER SYMPTOMS WERE GONE AS WELL.
LEMON is the Number One Alkaline food and TURMERIC and GINGER have many healing properties..,research them.  YOU HAVE TO CUT OUT THE PROCESSED GARBAGE (SO CALLED FOOD) AT THE SUPERMARKET...AND IF YOU WANT TO CONSUME ANIMAL PRODUCTS I WOULD ONLY DO WILD FISH...THE CHICKEN AND BEEF ARE NOT GOING AID YOUR BODY RECOVERY...IT WILL HINDER IT.
I HAVE BEEN THROUGH HELL WITH THIS VIRUS MONO (EPSTEIN BARR)...THERE WAS A TIME I FELT I COULD NOT GO ON.  I HAD TO SEARCH FOR ANSWERS MY SELF BECAUSE THE DOCTORS DID NOT HAVE ANY.  THEN AFTER RESEARCH I LEARN THE BODY TRIES TO HEAL ITSELF FROM VIRUSES, BACTERIA and OTHER ILLNESS...YOU HAVE TO FIND NATURAL FOODS (FRUITS, VEGETABLES, ROOTS) THAT WILL AID THE BODY IN THIS TASK.
LET ME KNOW WHEN YOU START AND PROGRESS.  YOU HAVE NOTHING TO LOSE AND A WHOLE LOT TO GAIN.  
1 Comments
GOD Bless you and GOD Be with you...im going to try this...I thank GOD for your post
Avatar universal
Yup I get severe body twitching and seizures from the neurological damage from EBV
Avatar universal
Oh my God yes I thought I was the only one I've been dealing with it for like the last 4 months it's horrible but it's like a constant basis where I feel like Tremors in my hands muscle twitches all over my body I've lost like 20 pounds and I even feel like brain shakes in my brain and in my spine and in the back of my neck everything it makes me feel so wobbly and week I had to take a leave of absence from my job.
Avatar universal
Hi I know this is an older post but I want to help people who may be in my situation. Because this site has helped me. I’m 48 and have ebv reactivated. It’s horrendous. I’m finally improving after 2 1/2 months. I have been to 4 doctors who don’t know about this disease or it’s related symptoms. A regular  md, neurologist , rheumatologist, and infectious disease dr.
My symptoms are weakness
Extreme fatigue ( in bed for 3 weeks straight)
Trouble walking
Severe Nausea
Stomach pains
Body aches everywhere sometimes severe
Twitching
Shaking
Feel feverish but no fever

It’s been extremely debilitating.
I’m eating very healthy.
I’m taking monolaurin,
Vitamins, lysine turmeric  and reichi mushroooms.  Not sure if this has helped me recover but possibly.
1 Comments
Oh I forgot to add. I experienced Extreme  weakness, dizziness, lost at least 15 pounds and pink eye too. It’s horrid. I feel for anyone going through it.
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