Wondering--wanting info

[Dorti12345]

At 48 years of age-I was diagnosed with mono caused by ebv in jan 2013... Ebv titters have been high (igg and igm) for over a year.( been checked four times in a year) . Still have fatigue, sore throat, intermittent low grade temp..etc..  Am being sent to ID doc .. Any ideas on what cause the blood work to stay and not go down as expected.. Thoughts?

[sukia]

Have you had your EBV DNA checked? Positive EBV DNA values over around 2000 in addition to mono symptoms for more than 6 months is diagnostic for CAEBV.  If you do have it, you should also find out what type it is.  B, T or NK.  Not too many dr's know about this as it is very rare.  I know because I have it and it's the B type which thankfully is the milder type.  All 3 types if there's a tissue or organ involvement can will be lethal and fatal. I have been sent to the NIH for this matter.  Most important thing to do is get your EBV DNA via PCR tested and monitored over few months to see which way it's heading.  Let me know if you need more information.

[mkh9]

Yes it would be a good idea to get a second opinion since what this doc is saying is rare. It is not impossible but since it is rare then you should get another opinion. I would think that ID doctors have some that are specialist in EBV. Perhaps calling around to see who specializes in it? That is what I did to find a neurologist that specialized in migraines. I just looked up all the  doctors in my insurance plan in  my area and called them all. Unless your insurance knows one? Also, maybe your family practice doctor knows a specialist in it? It is really a specialty in a specialty. Perhaps if you went on the EBV forum on here they may have an idea about this? You can ask if anyone has been diagnosed with it too. Although, they may not be able to give out a specific doctors name (I think it is against the rules) but they can direct you.
mkh9

[Dorti12345]

The ID doc looked at my blood work etc... I would like to know how I find a doc who specializes in ebv ?   I want a second opinion...

[mkh9]

Hi, well this is a complicated matter. So I think I was referring to your immune system having the right amount of cells (white blood cell types) to fight it "like normal. So you usually have a certain number overall of white blood cells (WBC;s) a certain number of red blood cells or RBC's. etc. also, they do microscopic counts and the number of Lymphocytes, segmented cells or PMN's , basophils, monocytes, etc. The lymphocytes are what goes up with mono during an acute infection Even though they call it "mononucleosis.' Because it is atypical lymphocytes that look like monocytes. So fighting it like normal would mean you have an active immune system or you are producing enough white cells to fight it off or lymphocytes etc. At that point it was too soon to know you had this. Anyway, The CAEBV is Chronic Active EBV. It is actually very rare in the US and more common in Asia and South America.  In the US the EBV virus is in the B cells or those cells that produce antibodies.  Anyway it can affect your liver, spleen and cause anemia, low platelets, swollen lymph nodes and a variety of other problems.  It can get into the tissues , and organs, it depends on what kind you have or where it goes. It is different depending on the person.  Are they sure you have this? How did they diagnose it? There are a number of treatments that have been tried from acyclovir, to interferon alpha and gamma, to Interleukin 2 and a new chemo of a sort. It all depends on if it is that bad or it may not get that bad. So you need to discuss this with your doctor. Some people don't get too bad of symptoms while others can. Some even have a genetic predisposition.  I think they will have to follow your symptoms and lab work and see how you do and base your treatment on that.  I hope this helps explain some.
mkh9

[Dorti12345]

What does fighting it like normal look like?   My ID doc says it is CAEBV... ANY IDEAS?

[Dorti12345]

IGG  and IGM "Normal" is supposed to be less than one and both of mine are greater than five? .. The cbc seems ok... A  few renal counts where high that he noted but nothing "bad" I think it is taking too long.., guess I am impatient... Thanks for weighing in...

[mkh9]

Usually, the IgG will stay up for life but the IgM goes down after a couple of months. You can get chronic fatigue from this. I would guess perhaps your immune system is not very high? Have they checked your lymphocytes on the complete blood count to see if they are still abnormally high too? You can have an immunoglobulin test to see if they are low or the CD4/CD8 levels. Is your complete blood count normal now? It is possible that you are getting slightly better then getting a recurrence and then getting better then a recurrence or your just not fighting it like normal.