Just Diagnosed w/ Epstein-Barr Virus. Now What?!

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Depressed Momma
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Date Joined Oct 2011
Total Posts : 13
   Posted 12/23/2011 4:21 PM (GMT -6)   
I was recently diagnosed with Epstein Barr Virus. I also tested positive for Mono. I am not a teenager, nor have I been kissing any teenage boys (lately,lol) I just got a call from a nurse, and not much information. So now what? From what I understand from the research I have done is that I will basicly have this condition for life, with times of flare ups. I have been suffering from fatigue for more than 15 years. I always thought it was from my chronic depression. It is nice to have an actual blood test to confirm why I am feeling so lousy. I have always had this "invisible" disease that my family questioned.

What specialists do I now need to see? It would be helpful to hear from others with this disease.

Thank You

NRVLaura
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Date Joined Jan 2012
Total Posts : 17
   Posted 1/15/2012 5:07 PM (GMT -6)   
Epstein Barr Virus is a virus in the body of most individuals. But, usually, healthy immune systems keep it in check. You can certainly get "mono" from yourself. I did. When your immune system is challenged (by other viruses, bacterial infection, stress, etc) or crashes, the EBV in your system can replicate to high enough levels to tip you over into active infection.

Once infected, you can "recur" active infection again any time you get run down. So, to me at least, it becomes a lifestyle illness. Keep as well as you can and the incidence of recurrence is limited... although I have never found a way to totally prevent all recurrence.

Laura

NRVLaura
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Date Joined Jan 2012
Total Posts : 17
   Posted 1/15/2012 5:09 PM (GMT -6)   
oh yes, specialists - immunologist, sleep specialist (to rule out apena problems), rheumatologist, internal specialist. At least, that is who I saw when first learning to cope with this mess. Now, I just keep up with the immunologist.
Laura

Depressed Momma
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Date Joined Oct 2011
Total Posts : 13
   Posted 1/17/2012 10:42 PM (GMT -6)   
Thanks for the replies. I am just so tired of being sick & tired! Do I need a referral for an immunologist?
Depressed Momma

NRVLaura
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Date Joined Jan 2012
Total Posts : 17
   Posted 1/17/2012 11:05 PM (GMT -6)   
probably depends on your insurance. Sorry cannot give better answer.
Thriving Around Chronic Illnesses! The purpose of life is not to simply breathe... The purpose is to thrive, enjoy, and rejoice!

Diagnosed with Fibromyalgia, EBV, Chronic Fatigue Syndrome, Osteoarthritis, Seasonal Affective Disorder, OCD, Major Depression, Chronic Migraines, Multiple Allergies & Asthma, Chronic Pain (nerve damage from a car accident), and Whiplash

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/18/2012 3:52 PM (GMT -6)   
amazing. what did you doctor say that tested you?

Did he offer some kind of treatment?

EBV is something I am trying to figure how to deal with.
I only found out I've had lyme most of my life. It seems like
a lot of the lyme people have EBV also.
some say MONO is EBV.
My sister had to go on thyroid meds after her Mono episode when she was
12.
I would really like to hear what people are being treated for EBV also.


One thing I have found to feel more energy is to make sure I get enough protien and am trying some where bettween the Lipid diet and the Peleo diet.

Otherwise many people are having good results with B12 shots. I'm gonna try that next.

good luck. It's nice to finally get an answer to why you been feeling so fatigued but it would be really nice if you had answer how to turn it around.
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/18/2012 3:52 PM (GMT -6)   
amazing. what did you doctor say that tested you?

Did he offer some kind of treatment?

EBV is something I am trying to figure how to deal with.
I only found out I've had lyme most of my life. It seems like
a lot of the lyme people have EBV also.
some say MONO is EBV.
My sister had to go on thyroid meds after her Mono episode when she was
12.
I would really like to hear what people are being treated for EBV also.


One thing I have found to feel more energy is to make sure I get enough protien and am trying some where bettween the Lipid diet and the Peleo diet.

Otherwise many people are having good results with B12 shots. I'm gonna try that next.

good luck. It's nice to finally get an answer to why you been feeling so fatigued but it would be really nice if you had answer how to turn it around.
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

MissyL
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Date Joined Aug 2012
Total Posts : 1
   Posted 8/24/2012 6:04 AM (GMT -6)   
I have also recently been diagnosed with EBV. Since giving birth to twins 8 months ago via ceaser, i have been experiencing chronic pains and exhaustion unlike anything i've ever felt before. Not believing this was "just" a part of having had a caeser or the strain of adjusting to life with newborn twins, i have visited my medical centre more times since December, than i have in my whole adult life. I am 35 years of age, and up until this EBV infection, i had never had need to visit a doctor. I had previously exercised daily and felt great. After refusing to leave the doctor's surgery yet again with the usual advice of, "lose weight, stay warm and rest", i persisted and managed to find a female GP who ran the gambit of tests - blood tests, chest xray, ultrasounds. Having always believed it was a "kissing" disease i was shocked to learn that i had recently become infected with EBV and, as a double whammy, had been exposed to Ross River virus (a debilitating viral illness, caused by mosquito bites, and apparently common in certain parts of Australia - who knew! I had not even noticed a bite mark on me!).

Joint pain, night sweats, inability to lose weight (despite exercising regularly), swollen and extremely painful glands, esp in the left side of my neck, crashing for days after any great physical exertion - i was, funnily enough, relieved that it was "just" EBV; as punching those symptoms into Dr Google will bring up a range of nasty illnesses from HIV to lymphoma (the one that scared me the most!). Although the GP has told me that it will take up to 2 years for me to recover, and that it is a matter of waiting it out, i am going to be proactive about this bloody thing and use it as an opportunity to become even more healthier than i had previously been. Now that i know that i wasn't "imagining" the symptoms, that i have blood results to prove that i am feeling physically lousy for a reason, has given me a new found sense of power, as now that i know what i'm dealing with, i can learn about it, and take charge.

My vitamin D levels at diagnosis were quite low (24) - so i am currently on 5000 iu/day, and am starting to feel fantastic - I would recommend to anyone who has EBV or CFS to check their Vit D levels twice yearly, as it's such an awful state to be in when levels are low - it lowers your immune system's ability to fight off illness, and i contribute my getting the debilitating EBV symptoms to my generally lowered immunity (caused by pregnancy and limited time in the sun). The aches and pains, whilst still present, have certainly started to diminish, after a month on the vitamin supps. The swollen glands still persist, and they are something i am very much made aware of, unfortunately. I am eating more protein (less carbs), and i am trying to walk everywhere, instead of relying on specific workout sessions to shift the post pregnancy weight. I find the exercise helps to raise my energy levels temporarily; but boy, do i pay for it the next day. If the pain is quite bad, i just take some paracetamol, or use a Chinese ointment that i rub onto my joints, and i find it helps immensely. Fish oil is also fantastic - i've upped my dose to 6 capsules a day. If nothing else, i'll end up with great, wrinkle free skin ;o)

I have tried acupuncture recently, and whilst it helped the swollen glands somewhat, it's not something i see myself continuing with - as i came to realise that i really do hate needles and the sessions were quite painful! lol Am planning on finding a good immunologist who can advise me of further treatments that i may not have thought of in helping me stay as healthy and energised as i can during this recovery period.

Whilst it's not a nice illness/infection to get, compared to what other people suffer with, i am happy to take it, become better for it; and, knowing that i am doing all i can to beat it (for the sake of my children and my career, which i love) empowers me and helps me power through all the awful days.

Best wishes to all. :O)

Cocoa123
New Member


Date Joined Apr 2010
Total Posts : 5
   Posted 9/12/2012 2:54 PM (GMT -6)   
I suffered from EBV, Chronic Fatigue for over 18 years with Insomnia. I had to take Xanax and Lunesta combined in order to sleep and then Ephedra and coffee to stay awake during the day.  I went from working 65 hrs. week at a prestigious lawfirm in SF, California to being completely bed ridden at the age of 33.  It was absolutely horric.  I must have spent $5000 in out of pocket expenses because my HMO doctors did not know what to do for me.  I am now in full 100% remission.  My father who is a Chiropractor and Nutritionist and still practicing at 90 years old (he looks like Jack LaLane) did years of non-stop research (despite the fact the Medical Doctors said I would NEVER work another day in my life) and finally stumbled across something that profoundly changed my life. 

WillHealAll
New Member


Date Joined Apr 2011
Total Posts : 11
   Posted 9/13/2012 1:05 AM (GMT -6)   
Cocoa123 said...
I suffered from EBV, Chronic Fatigue for over 18 years with Insomnia. I had to take Xanax and Lunesta combined in order to sleep and then Ephedra and coffee to stay awake during the day.  I went from working 65 hrs. week at a prestigious lawfirm in SF, California to being completely bed ridden at the age of 33.  It was absolutely horric.  I must have spent $5000 in out of pocket expenses because my HMO doctors did not know what to do for me.  I am now in full 100% remission.  My father who is a Chiropractor and Nutritionist and still practicing at 90 years old (he looks like Jack LaLane) did years of non-stop research (despite the fact the Medical Doctors said I would NEVER work another day in my life) and finally stumbled across something that profoundly changed my life. 
What was that "something"?

Ugh Again
New Member


Date Joined Nov 2013
Total Posts : 2
   Posted 11/18/2013 3:36 PM (GMT -6)   
Cocoa123, please tell me what ur father "stumbled across" that helped you so !?

Ugh Again
New Member


Date Joined Nov 2013
Total Posts : 2
   Posted 11/18/2013 4:04 PM (GMT -6)   
WillHealAll said...
Cocoa123 said...
I suffered from EBV, Chronic Fatigue for over 18 years with Insomnia. I had to take Xanax and Lunesta combined in order to sleep and then Ephedra and coffee to stay awake during the day. I went from working 65 hrs. week at a prestigious lawfirm in SF, California to being completely bed ridden at the age of 33. It was absolutely horric. I must have spent $5000 in out of pocket expenses because my HMO doctors did not know what to do for me. I am now in full 100% remission. My father who is a Chiropractor and Nutritionist and still practicing at 90 years old (he looks like Jack LaLane) did years of non-stop research (despite the fact the Medical Doctors said I would NEVER work another day in my life) and finally stumbled across something that profoundly changed my life.
What was that "something"?

pepperlady
Regular Member


Date Joined Oct 2012
Total Posts : 89
   Posted 11/19/2013 9:36 AM (GMT -6)   
Wow reading all of your comments sounds like a lot of my health issues.  I am SURE I have been tested for EBV have a RA had blood work several vials I know I was tested for autoimmune diseases which  I don't have.  for new member MissyL you said left side of your neck where EBV is.  I have HSV II left side (herpes 38yrs) I have suffered from Lft sided CHRONIC PAIN and Fatigue 3yrs(chronic pain 20+yrs).  2mnths ago it started a symptom @ a time which never let up I went to ER NECK PAIN I was admtd 6dys pain meds changed I tolerate @ 7.  I was so happy to have a pain level @ 7 for 4-5 hrs.  1 symptom still there fluid swelling in a sinus?? (no infection) just above my teeth no tooth ache or temp bother.  OK ALL symptoms are still there are and getting worse.  Symptoms: facial burning, eye pain + burning, ear pain, facial numbness, jaw pain, neck glands tissue like lemon juice sometimes running thru them shoulder pain.  I am on the couch majority of the day I called infectious drs yesterday my city none to help called Stanford want a diag with CFS and my medical records they would review + call me if they can help.  My VIT D 9 in June been on 50000 iu 1xwk my B is soo low B12 inj.  I am so frustrated I have told and asked ALL DR.S about HSV II.  I know my body and what is not a strained muscle or the Flu.  Had to vent it's just 7:30 been awake since 2.          

Dottie 6 herniated disc, femoral nerve damaged thigh numb, nerve pain, fatigued, Raynaud's vasculitis, Chronic left side pain, Factor II genetic disorder, Fibromyalgia 2013, HSV II

kyled427
New Member


Date Joined Sep 2014
Total Posts : 1
   Posted 9/14/2014 10:48 PM (GMT -6)   
Cocoa123 said...
I suffered from EBV, Chronic Fatigue for over 18 years with Insomnia. I had to take Xanax and Lunesta combined in order to sleep and then Ephedra and coffee to stay awake during the day. I went from working 65 hrs. week at a prestigious lawfirm in SF, California to being completely bed ridden at the age of 33. It was absolutely horric. I must have spent $5000 in out of pocket expenses because my HMO doctors did not know what to do for me. I am now in full 100% remission. My father who is a Chiropractor and Nutritionist and still practicing at 90 years old (he looks like Jack LaLane) did years of non-stop research (despite the fact the Medical Doctors said I would NEVER work another day in my life) and finally stumbled across something that profoundly changed my life.


PLEASE tell us what it was that profoundly changed your life. I want to try it as soon as possible.

kehaukeiko
New Member


Date Joined Sep 2014
Total Posts : 1
   Posted 9/16/2014 6:44 PM (GMT -6)   
A few weeks ago, I met someone who's daughter had it 20 years ago. What helped a lot was removing sugar and white products from her diet (rice, breads, bad carbs.)

Introduce fruits and vegis, now days, you should choose organic, if you are able to.
Pesticides are not helping your body heal.

This is a great start.

I can find out more info for you.

Joey911
Regular Member


Date Joined Sep 2014
Total Posts : 67
   Posted 1/7/2015 3:34 PM (GMT -6)   
http://www.treatmentcenterforcfs.com

Im not promoting this place (even though i'm a patient), but it has a lot of information on the viruses. His Beaumont Hospital video presentations are long but do explain their study and treatment behind EBV (mono), CMV, or HHV6 as causing CFS. I'm getting anti-virals through IV right now for HHV6 after a bad experience with Valcyte, but it is too soon to tell. This Dr. does lay out his treatment plans for any Dr. willing to try and manage antiviral treatment IF you have a confirmed reactivated virus. Trust me, the reactivated virus conclusion is a hard one to get (outside of Drs. like this). I have been to a dozen Dr's in Michigan, not including the University of Michigan and the Mayo clinic recently, and all unsure and tippy toe around the subject due to the lack of studies and tests they claim.

Im not promoting antivirals as the fix but its interesting reading.
IGM Igenex/CDC Positive
23-25 IND, 31 +, 34 IND, 39 +, 41 +, 83-93 +
IGG:
41 IND
MTHFR C677T homozygous

burnoutfree
Regular Member


Date Joined Jun 2014
Total Posts : 74
   Posted 1/12/2015 4:21 AM (GMT -6)   
could EBV attack your SKIN?

kehaukeiko, can you tell more about this? could you give me private massage?
i don t know if i have lyme.still testing.
i have Spirochetes, Bartonella, Mycoplasma, anaplasma tested on DFM!
Situated in Est Europe.
had digestiv problems after getting sick. removed gallbladder 03-2014

LinseV17
New Member


Date Joined Feb 2015
Total Posts : 1
   Posted 2/5/2015 11:48 AM (GMT -6)   
Hey all,

My doctor has been treating my EBV with Liposomal artemsinin. 2 teaspoons a day, 3 times a week.

It has made a huge difference (once I was able to get through the herxing) and has even helped lower my hashi's antibodes!

I did have to couple it with acyclovir for a little while on my off days because my herxing was so bad, but it has definitely made a huge impact!

FightingToSurvive
New Member


Date Joined Sep 2015
Total Posts : 2
   Posted 9/7/2015 2:33 PM (GMT -6)   
I have had Epstein Barr Virus since 2008/2009 & it wasn't diagnosed until 2013. I also have CFS & the herpes virus as well, not to mention Depressive Mood Disorder, Anxiety, & the list goes on should I say. I was like a lot of people I've read about during my research over the years & could barely get out of bed, much less do anything else. I tried various OTC & herbal remedies over the years, most before I was ever diagnosed & nothing seemed to work. I was trying to hold onto my life, my career (as a Physical Therapist Assistant) & anything else I could attempt to grasp at. The only thing I've had any luck with is when I changed my diet & the way I eat approximately 2 1/2 yrs. ago & last year I started taking weekly B12 shots (most insurances don't pay for it but it's not very costly.....about $16 a month & I do the injections myself at home). I started going to the fresh vegetable markets & buying & preparing fresh bell peppers, Vidalia onions, spinach, lettuce, tomatoes, asparagus, you name it.......anything that had a rich deep color I bought. One of my signature dishes I started preparing was chicken surrounded by fresh vegetables. Vegetables like broccoli I bought frozen just because it was easier for me to prepare it due to my energy levels. Slice all your veggies up including a whole onion, toss them in Extra Virgin Olive Oil & spread them around a chicken breast or 2, then generously sprinkle all of it with basil, oregano, parsley, fresh garlic, thyme, 1 tsp. of lemon/lime juice & don't forget salt & pepper (I use sea salt with iodine) or on my lazy days I just use Mrs. Dash- it tastes GREAT & saves me time & energy because I'm all about that for sure! Lol. When I prepare meals I make enough for at least 2 meals if not 3 sometimes that way I have good wholesome food to eat & can use my energy the next day to take a shower or even do a little laundry. When you change your diest it can take 4-8 weeks before you can really tell a difference but please keep going. For breakfast I usually have sliced pineapple (I buy canned but get it "in juice") or strawberries with a yogurt, or oatmeal & even a PBJ sandwich occasionally- something light & easy to fix. I also take a daily multi vitamin, Fish Oil, & Glucosamine. If you can't do the preparation of the meal at first try to find someone to help you with it.
IT IS WORTH IT! I can at least get out of bed, fix a small breakfast, walk my 2 dogs, & do most activities of daily living now. Don't get me wrong, I still have bad days, but at least they're not "all" bad like they were before. Good luck!

FightingToSurvive
New Member


Date Joined Sep 2015
Total Posts : 2
   Posted 9/7/2015 2:43 PM (GMT -6)   
I forgot to add that I do a 10 minute session of Yoga 3-5 times a week. The stretching does wonders & helps me to relax (I have 2 bulging discs in my low back, 2 in my neck & sciatic nerve pain) & it decreases my anxiety as well. I use the one on Dr. Oz's website, it's called "Yoga in 10" & I walk my dogs around the block twice daily if I can. I know it's hard to keep on keepin' on sometimes, but please keep FightingToSurvive!!!!!" Best of luck!

KaeRay9112
New Member


Date Joined Sep 2015
Total Posts : 4
   Posted 10/31/2015 4:15 PM (GMT -6)   
All issues started to arise after I had a bad case of Mono (EBV PRESENT). I was in the hospital for two weeks with severe inflammation of my spleen and liver. A few months after I was then diagnosed with CFS. EBV has completely destroyed my autonomic system. I have POTS, post cholecystectomy syndrome, autoimmune hepatitis, IBS-C, osteoarthritis, Peripheral Neuropathy, and a few more undiagnosed issues. Idk about anyone else, but I was decently healthy before EBV. Now I can't even go up the stairs without help.

Out of all the meds I take including Gabapentin, VIT D, Midodrine, ect, IV Saline Therapy has been the most helpful. It has reduced my flares enough that I can work. Yeah it's still difficult but not as bad as it used to be. C: I went to my PCP who deals with chronic illnesses who then sent me to a neuro who deals with dysautonomia and he then gave me a script for IV Therapy. I'm hoping soon to get a PICC line because needle pokes just are too much. Hahaha. But it's worth it.

Post Edited (KaeRay9112) : 10/31/2015 4:19:42 PM (GMT-6)


Ashaline
Regular Member


Date Joined Oct 2014
Total Posts : 82
   Posted 11/1/2015 11:19 AM (GMT -6)   
Huh, I always thought EBV was mono. Do you need a specific test for EBV?

If you were to take an antiviral, can people who have lupus take that? Anyone know that info?

Mississippi Jane
Regular Member


Date Joined Jun 2014
Total Posts : 242
   Posted 6/19/2016 7:17 PM (GMT -6)   
I also had Epstein Barr for the first time in 2012. I had had it for a while, so I was only on bed rest for 6 months.

And since that time, I have been very sleepy and pretty lazy, as well.

My PCP retested me in 2014 because I was always sleepy. My test results had info such as early antigens. On one part of the test, I think the reference was 1.5-79 and mine was 600. Another same reference and mine was 296. My doctor said that I was doing great and that my high numbers meant I was really fighting the virus well, but I'm still dog tired.

Post Edited (Mississippi Jane) : 6/19/2016 7:20:04 PM (GMT-6)

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