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FIbro and Epstein Barr virus?
33 Replies
Sasha - April 30

I was a healthy 27 year old female until last year- I developed nearly everything at once; chronic fevers, lethargy, flu like symptoms, anxiety, depression, panic attacks, weight loss, allergies, asthma.. it was like my whole body just shot down.

At first they thought i had lupus and later found I had extremely high Epstein Barr titers and eventually a neurologist diagnosed Fibromyalgia ( and an allergist diagnosed allergies to nearly EVERYTHING).

I am just curious if anyone else has had high Epstein Barr titers as well?

It seems like there may be a connection.

 

Anne - April 30

The viral, or post-herpetic, is one of the four common routes to FMS.

Viral route often have a history of flu, mono, EBV, Chronic Fatigue Syndrome. When the swollen glands go down and the symptoms remain, that's FMS.

 

daylilyblue - October 10

Sasha, I had almost exactly the same thing happen to me except the wt loss, allergies and asthma and I had a horrible headache 24/7 for a month. It started with feeling like I had the flu and then proceded from there. I felt terrible for 2 months had a break of 5 months almost symptom free except neck and shoulder pain and fatigue then 2 more months of feeling awful with the addition of a weird rash that my doc said was erythema nordosum. They sent me to a rheumatologist who did thousands of $s of tests to tell me I had EBV recently and had had parvo at 1 time and my sed rate was and still is elevated.

 

asilinc298 - November 22

Yes I think there is a connection with the two, I had EB when I was 17, then after a severe whiplash at 21 I got fibro.

 

AmberRose - November 28

I had mono at 20 and was fine after that untill i was pregnant with my 2nd child (3 years later)which is when i beleive i developed hypothyroidism and ive read up on the signifigance of hypothyrodism and mono (ebv) and there are many doctors who belive there is a link too those, i beleive studies show that 80 percent of hypothyrodism patients have had mono and then also hypothyrodism is an overlapping illness seen in a large number of patients with fms...so its kinda a circle thing i guess..but also interesting to knwo that once you've had an ebv the virus lays dormant in the throat cells or wherever for the rest of ones life

 

soozofny - December 26

I had the exact same experience at 26. I was getting strept throat, rashed, fevers, anxiety (thought I was having a heart-attack), and basically fell asleep for 3 months - Drs. finally said my white blood count was high and spleen was enlarged and I had Epstein Barr, Chronic Fatigue, and possibly FMS...which ended up being diagnosed as FMS down the road indefinitely. But yes, I experienced the EB Virus at full speed and it was horrible. I think that was what opened the FMS for the official long term struggle that I now have of the pain and sheer exhaustion. But, I never have gotten as sick as I was when I first got that EBV....

 

azlady - June 14

Yes, I sure have. I just found out that my titers are 1,574 and they are going to test again in a few weeks. What do they do about that. They have said that I have Epstein Barr but have no sore throats just a lot of tired and no energy and no sleep. The rest of fibro is here with a vengence. I hurt so much I hurt being hurt.

 

lombard - June 27

my ebv titers are over 2000 with a past history of infection . i never got sick with it but dr is blaming my illness on my tests.seing id specialist.im so scared that it wont go away as there calling it cebv

 

westwoman - June 27

When I first began my fibromyalgia journey,my Epstein Barr titers were off the charts.I, too, am allergic to many things,and they also thought I had lupus. I do agree there is a connection there.... Good Luck and God Blesss

 

lightspirit - August 7

We get it just like anyone else Sasha. I also have EBV and Ross River virus too, feel awful for a while but you will recover, you MUST REST as much as possible, I did nothing for four months except watch tv!
Cheers from Oz
Lightspirit

 

gothceltgirl - August 28

Yes, I have had Fibromyalgia for the past 7 years and until about a year or so ago, I tested + for Epstein Barr. And it's been chronic fatigue as well. I have barely enough stamina to clean my tiny apt. I think there is definitely a connection for many.

 

pmartin - January 6

I had high levels of EBV and was then very shortly after diagnosed with FMS. I was tired and hurting and just couldnt get myself together after the death of a family member that I was very close to. I just got run down with the funeral process and such and when I went back to work I couldnt get it together which started the whole diagnosis road. It took me 13 months of going to several doctors and having every test on the planet, ending with a rheumetologist and the diagnosis.

 

kathymitchell - January 10

Kathy from Sydney - I've just been diagnosed after 20 years of putting up with this b/s. Had skew of blood test and the only thing that came back was high Epstein Barr readings. I was diagnosed 20 years ago with chronic fatigue syndrome. Problem was I was never tired or sleepy - so don't know how they got to that diagnosis.

Just purchased a book called "The Fibromyalgia Handbook - A 7-Step Program to Halt and Even Reverse Fibromyalgia" by Harris H. McIlwain, Md and Debra Fulghum Bruce, Ph.D. Its very interesting reading. I've just done 1 thing suggested and that is the 2 x 20 min warm bath/spa (morning and night). This has helped. The main thing is to exercise - I know it feels like you can't, but it helps. I've got a double-dose, as I suffer from chronic vertigo also, so it makes it hard to push thru pain when you are "spinning out". I did it today - went for 40 min slow walk in the fresh air, and felt better after. Hope this helps - meditation and lymphatic drainage massage are also helping. And prayer@@

Cheers

 

eva Conkright - May 28

I wonder how high were any of your titers for epstein barr, my EPSTEIN-BARR VCA IGG AB are 4.07 when the normal rate is 0.00-0.90 anyone has such high titers.

I am exhausted beyond anything long ago was diagnosed with cronic fatigue but this is beyond that, and I am stiff and sore.

Can anyone share their values

 

Tired - August 30

I feel everyone's pain, literally and figurately. Been dealing with mine for over 12 years. Started after a bad bout of mono at age 28, with prior whiplash injury. Subsequently diagnosed with FMS in 2004. Recently found a nationally-renowned Lyme specialist, and was confirmed to have an advanced case of Lyme disease. Complicating matters was the fact that my EBV titers are off the chart, especially the IgG VCA (over 4000!!!). I like to think after so many specialists I am finally in good hands, but even this guy said the presence of Epstein-Barr will complicate the Lyme treatment. I'll keep you all posted.

 

Tired - August 30

I feel everyone's pain, literally and figurately. Been dealing with mine (chronic soft tissue) for over 12 years. Started after a bad bout of mono at age 28, with prior whiplash injury. Subsequently diagnosed with FMS in 2004. Recently found a nationally-renowned Lyme specialist/internist, and was confirmed to have an advanced case of Lyme disease (was tested negative earlier on the ELISA). Complicating matters was the fact that my EBV titers are off the chart, especially the IgG VCA (over 4000!!!). I like to think after so many specialists I am finally in good hands, but even this guy said the presence of Epstein-Barr will complicate the Lyme treatment. I'll keep you all posted.

 

sosad - September 7

Yes, I believe there is a connection. I had mono a number of years ago, and I feel like I never have been the same since. I did have depression prior to the onset of Fibromyalgia, but it has gotten worse since the mono. Epstein Barr Virus has something to do with this.

 

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