more test results

[speechgeek]

I have a postive CMV and EBV. I guess the EBV is supose to be 100 or less and mine is 2100. The infectious disease guy wants to run more test to see if the virsus are "asleep". My wetern blot is negative. However  had one band on the IGM #23. Does this mean anything to anyone?


Rebeccah

[speechgeek]

Thanks so much. I had run across some of this info. It's frustrating because no one agrees. The science is not keeping up with these diseases. The pt are left in the middle.

Rebeccah

[SOONERMOM]

http://www.canlyme.com/jemseklabtest.html  
You've probably already read this, but just in case:

As was stated above, the three IgM bands selected for qualifying a Bb infection are 23, 39, and 41. It is widely recognized that band 41 is present in the general population at a high incidence and therefore is a common false positive. One then wonders why band 41 is included at all in this small group of antigens that qualify a Bb infection. On the other hand, both bands 23 and 39 are considered highly specific for Bb infection, yet we require at least 2 bands for a diagnosis. Since we feel that the specificity of either the 23 or 39 band is quite high for Bb infection, and therefore the false positive rate exceedingly low when one of these bands are present, we believe that the detection of only one of these antigens is highly probable for laboratory confirmation of active LD. In this way, we differ in a major way from the stated criteria of the currently establishing committee.

[speechgeek]

I did have to have  referral to see him. Not because of insurence just because they won't just let anyone walk in and see them. So my PCPC had to makethe appontment.

IT could explain some of my symptoms but not all of them. I had facial numbness and tingling. Never a facial droop or swallowing problems which is the part of EBV I'm more familiar with.

I have 6 doctors with 6 very different opinions.

The infectious disease  guy said that even if these 2 viruses are "awake" there isn't any treatment he would do unless their  was organ involvment.

I can't wait for Hopkins.

Rebeccah

[SOONERMOM]

Maybe you are finally getting to the bottom of all this!?!  Would this explain your symptoms?  Did you need a referral to see the infectious disease doc?

Ada is right, Julie definitely knows A LOT about lyme & is really good about answering questions!

Keep us updated,

Stacey

[speechgeek]

Well I have a ton of neurological symptoms with sudden onset ( end of november ) and slowly going away. I had mono as a kid ( about 25 years ago). I also have axonal peripheral neuropathy, balance problems, leg, arm, amd hand fatigue, blurred vision, muscle fasicualtions, twitches and jerks, facial numbness and tingling etc.


I have found a lot of interesting things re: the relationship btw. EBV levels and MS and EBV levels and Lyme. I think that if I am reading things correctly the CMV and EBV are more of symptom than a diagnosis and are more of an indication of how my immune system is functioning or not functioning.

I have a feeling the infectious disease guy will put all the eggs in this basket... the same way rheumatology has put all his eggs in the vitamin D deficiency basket being the cause of all my troubles. Soon I will need a bigger basket.

I did find that band 23 can be in of itself an indicator for lyme....not recognized by the CDC. I also found something that said "IND" on your labs means "indeterminate findings" on an antibody. This means the lab tech is seeing something but not really ready to call it a clear positive. I had IND  all over my labs!!!


This docotor also found that many of these parients with IND had higher EBV  labs.

Lots of info out there. Very overwhelming.

Rebeccah

[spastic]

Hello, well to me dear it sounds like the EBV is active.  My daughter has chronic EBV and it seems everything triggers it.  Are you having symptoms?  The only thing I know about the western blot is for Lyme.  One band sounds like a low positive. JulieBob knows so much about this, send her a message, she will help you.

Best Wishes,

Ada