Past EBV infection/current positive blood work

[stron]

I have been experiencing a variety of symptoms over the last few months. Some of the more troubling include ear pain/pressure/popping, painful pressure in my head/back of throat/roof of mouth which is worse with walking, spasms in neck and back, difficulty with coordination, blackouts, neurological symptoms (cold hands and feet, trouble swallowing, numbness in extremities, incontinence, trouble speaking and thinking of words, pains/tremors in face and tongue), voice hoarseness, weight loss, vision change, bloody tinged mucus in nose, drainage in back of throat, and fatigue.

I've had a brain and neck MRI, an ENT exam, blood work, and a urine test. All of the tests have been normal so far. I also just tested positive for a cancer predisposition syndrome associated with soft-tissue sarcoma, breast cancer, leukemia, osteosarcoma, melanoma, etc. Meaning that I have a 50 percent chance of developing cancer by age 40 and up to 90 percent by 60 years old.

The only other thing that the tests have shown is that I am positive for EBV (VCA IGM-1.13, VCA IGG-1.63, EBNA IGG-4.60). My doctor said that the mono is causing my symptoms. I find this to be odd because my symptoms seem mostly neurological and I do not have a sore throat, swollen glands, or a fever. Also, I had a severe case of mono ten years ago which was documented with blood work. My doctor said that this is impossible because you can only have mono once.

I'm concerned because research I have found says a reactivation of latent EBV can occur in immunodeficient patients, I'm having all of these symptoms, and I'm at a high risk of developing certain types of cancer. Also, certain types of cancer are associated directly with EBV.

If anyone could give me more information on this, I would appreciate it. Thanks.

[Totie]

Have they tested you for TB?

[PlateletGal]

It clearly sounds like you have a successive infection. I was wondering if your physicians have ruled out lyme disease ? Here is a possible scenario in a lyme disease case :

Possible scenario in lyme cases:

You are eight years old and you get bitten by a lyme infected tick. But your immune system is healthy enough to keep the bacteria under control.... so you are unaware that you have lyme disease. Ten years later... you get a virus, are working full-time and going to school part-time (or vice versa) or you have an emotional trauma (it happens to all of us). As a result, your immune system is worn down... and then guess what happens ? The lyme bacteria has the opportunity then to thrive and then you are all of a sudden very ill. The same thing can happen with viruses. These nasty, opportunist infections are just waiting for their time. That is why, IMO, we need to fight these infections.

So I would highly recommend getting lyme disease ruled out, because it is quite obvious that your condition (like fibro, lyme, MS, CFS, etc.) is affecting your Central Nervous System.

Also, I hope that you will stick around. You may want to mark your calendar.... on May 20th from 12-1 PM (Pacific Time), Professor Garth Nicolson will be joining us again here on MedHelp for a live webchat. For more information on Prof. Nicolson, visit http://www.immed.org. I would also recommend clicking on "clinical testing" --- you can find the preferred test for lyme disease, although insurance may or may not pay for the testing. Often patients who have lyme disease will have a negative lab test... this is one of the reasons why it is so important to rule out this terrible, but treatable disease.

[stron]

I just tracked down my results from my blood work in 1999. I don't know what the levels were, but the nurse I spoke to said that the results showed a past infection.

[ginak]

You are not alone. I have EBV and I suffer from a ton of neurological symptoms. I have a clinical dx of lyme, but I seriously doubt this dx at times. All 3 of my EBV levels are elevated. I too have some of the same symptoms that you have, especially the tremors. I have major tingling and also tinnitus in both ears. Know that you are not alone.

[lvfrogs]

My pulmonologist is the one that found out about my EBV, thank God, finally. However, you are correct in stating that it can be linked to so many things. I think you need a full workup with a cardiologist, gastroenterologist because I was having (and still have) all those symptoms you are. I haven't been fully tested yet, but I do have other conditions that came on ONLY after my infection. Let us know!

[AngCain4]

This is to all of us that are suffering with EBV.... and "stron".

I have done some research online about EBV & Central Nervous System issues. Has anyone heard of VICD? Viral Induced Central Nervous System Dysfunction.

I've been struggling with getting a FIRM DIAGNOSIS for years. MS? Lupus? CFS? Or EBV with a bad back which is the reason for neuropathy, foggy brain, memory issues, tingling & numbness?

I'm currently seeing an Infectious Disease doc to monitor my EBV levels (VCA IGM 1.7, VCA IGG 5.0, EBNA IGG 5.0) and CMV (Cytomegalovirus).

I've tested negative for Lupus, Lyme, Parvo. Also have had several MRIs (no lesions) and CTs. Currently seeing Cardiologist for chest pain, shortness of breath.

Does anyone have any suggestions where to go from here?

Angela

[fashiono]

I have had all of this systoms which I had EBV and hypothroidism. Please have your doctor check your thyroid levels TSH levels and F3 & F4.