Could they be missing something?

[Monome]

I was diagnosed with EBV a year ago after the mono spot test came out negative. So far I have yet to go back to normal, after the diagnosis I was told it would take around 6 months for my body to recuperate. 6 month mark went by and its been a little over a year now. I have seen a series of doctor who have either dismissed me, labeled me as depressed or just told me to give it some more time. I am able to do my normal activities for the most part while not feeling good, except when theres a "flare up" as i call them when it just feels like i cant get anything done. Fever, Swollen glands, Foggy Brain, etc like when i first got sick. I have read about CFS and wonder if thats what its happening. Also,Ive noticed that since this summer i have a series of symptoms that include tingle feeling of my limbs, twitching (especially at night), numbness and lower back pain. I worry about these neurological symptoms and wonder if the doctor might be missing something more dangerous? Any suggestions/advice would be appreciated

[samwisegamgee20]

Hi there, i read your forum and am so blown away by the number and sheer magnitude of your problem. I was diagnosed with EBV 19 years ago and was really a child (9 year old). i have never been the same. at the age of 28 i still suffer these dumbfounding issues. 14 years ago a doctor took blood and found that i had only one immune marker for EBV, which in his terms meant that i hadn't had it at all. however, to this day i suffer these symptoms with diagnoses of CFS and fibromyaliga as well. none of which make sense after i was diagnosed with celiac disease. i beleive there is a link between autoimmune function and EBV. in some way it promotes the onset of it. I don't really know but i think there is a missing link somewhere.

[Swaffy67]

I finally met with an infectious disease doctor.  Without having all of my history from my other doctors, he decided to run some additional tests.  Based on my symptoms, he said that even with positive EBV titers, there could be bacterial infections, yeast infections, lupus, etc.  He made a list of possible issues and decided to test me for the top five and go from there, as well as retesting me for the EBV since it had been 5 months since I first tested positive.  

He is currently testing me for:

Cryptococcal Antigen
Toxoplasmosis IgG and IgM
ANA HIV Antibody
Bartonella serologies
EBV
Histoplasmosis and Blastomycosis Antigens

The EBV isn't bothering me as much as the discomfort in my right flank.  I have tingling all the time and sometimes severe pain.  He mentioned that it could be diverticulitis that is causing the pain.  He is checking my stool for blood (whoopie!!!) and if it's positive, I have to look forward to a wonderful colonoscopy!!!

At least I've found a doctor that is willing to think outside the box instead of calling it CFS and doing nothing.

More to come...........everybody hang in there!

[PlateletGal]

I believe that EBV is a trigger for all of these symptoms and/or can trigger autoimmune diseases.

I hope that everyone here will be rule that their physician has completely ruled out lyme disease as a possibility. I've said many times that you could be bitten by a lyme infected tick when you are a child and yet not have lyme disease symptoms. And then you have mono and all of a sudden, you are very ill and find out that you have lyme disease !

Lyme disease testing is tricky. Make sure that you've been tested at least twice.

Best,

~PlateletGal

[Monome]

Thank you all for replying to my post.  Even though my problem is not fixed, it's reassuring to know that I'm not the only one going through this.  Good luck with your appointment Swaffy67.  Can't wait to hear what they tell you.

[Swaffy67]

I feel your pain........literally!  I have been dealing with this for almost a year and I still have no answers.  I have a lot of the same symptoms that you do and some days are better than others.  I have an appointment next week with an infectious disease doctor.  I'll post what he tells me.  Know that we are out there with you.

[lazyace]

I don't know what kind of doc you have been working with, but I would find an infectious disease doctor that you connect with.  I would also see a neurologist.  If neither of them come up with anything then I would consider CFS.  Best of luck, there are many of us in the same boat!

[ginak]

Hello,

I too have a ton of neurological symptoms that are very scary. I have had a complete workup for more serious conditions, but no one can seem to give me any answersw either. From what I understand, EBV can cause all of this to happen. Hang in there, you are not alone.

[Monome]

Btw i have been tested for lupus, thyroid disease, anemia,& Parvo among others with all labs coming out normal