posted
I have a question for the folks out there that are familiar with EBV.
Back in October, I had some blood work done by one of my son's docs, after I observed that I, like my son, had dark circles under my eyes.
The bloodwork came back with me having very high EBV titers. (EBV VCA IgG 2131). A lot of excitement ensued from this (try googling 'high EBV titer" and you would see why) including an appointment with a hemotologist and a cat scan.
No life-threatening health issues were revealed by this, I just got the opportunity to look a bit uh, neurotic for the PCP and the hemo doc.
Anyway, in all of that hulabaluh, no attention was paid to the negative lyme test with the one positive band , 41 IgM.
From my readings, EBV can cause some false positive bands on the western blot. Is this one of those bands?
I'm torn between the oh crap, not me too, and the I don't want to deal with this, I just want my kid to get better and then move to tick-free island out in the ocean of nonexistence, so that I never have to worry about my kids getting sick with this again.
I am fairly healthy. I had lingering flu-like symptoms last spring. I had trouble staying awake in the middle of the day in early summer,
my hands swelled up a couple of ring sizes (hard to convince the doc of that when your starting point is a size 4 ring).
The knee that I injured rolling blading 15 years ago was hurting (normal for me in winter, but not in the summer), and my elbows hurt.
Some sinus headaches, an ear ache.
Worst of all, weight gain. 20 pounds in one year. I'm 5'1 1/2, thats a lot at my height.
Then it all cleared up, and other than being tired from not getting enough sleep, i'm pretty much ok right now, but still too fat.
I know all of this could be Lyme stuff, but it could be ebv too.
Any guidance here?
ps. I've tested negative for Lyme 3 times, this is the only lab that showed any positive bands.
I know, I know, I should do the Igenix test. It is hard to look at this after what we have gone through with our son.
Thanks. Be gentle. KP
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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posted
Band 41 can cross-react with a lot of things (infectious and benign non-infectious) including mono and can often found in healthy individuals. With only a band 41 positive (particularly IgG) I don't belive anyone should EVER solely use this as a marker or indicator of Lyme. I wouldn't let this test result send you into a panic if you are in good health.
However, if someone is showing clinical symptoms, they should be diagnosed/treated, regardless of how this band comes back. As much as band 41 could be a 'false positive' for Lyme, another band could be a false negative. Based on everything I've read, band 41 really only has serological diagnostic signficance if positive with a more specific Lyme band (ugh, even then false positives are possible).
I am by no means a doctor...just have done a lot of reasearch. I had my kids tested and both had a positive IgG band 41....
For those of us either with Lyme or watching a loved one dealing with Lyme, we can't help but panic!!
Posts: 561 | From mass | Registered: Jul 2007
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What you posted is pretty consistent with what I initially thought, I'm just not so sure about that line of thought today.
I thought band 41 was the indicator for flagellan, which is present in spirochetal bacteria (borriella and syphilus, and something else i think), thus my anxiety was upped.
It is hard not to have anxiety about this illness, when you've had to watch how it has affected your child.
posted
Before you conclude that you "only" have band 41, you really should have an Igenex done. Although still not definitive, it is the best, most sensitive lab around.
I do agree, however, that symptoms are what you should be looking at. Waxing and waning of symptoms is a clue and you sure sound like you have had some weird things going on.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
Remember that these bands we are talking about are just weights of proteins (o.k, maybe a little over-simplistic). Scientific literature supports an association of band 41 with non-flagella organisms as well (i.e. virus, possibly mycoplasma) and non-infectious things like different mammalian tissues (e.g. synovium).
To Sojourner's point, please note that my response to your inquiry about band 41 in no way dismisses the possibility of your having Lyme disease. I guess the point is that band 41 alone, really isn't a good diagnostic tool.
Posts: 561 | From mass | Registered: Jul 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Read the viral testing link here at Lymenet...it's on page 1 at the moment...
I'd retest your EBV and see where it's at. Might as well test for some other viruses too.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I have read certain mycoplasma infections can cause band 41 to become positive.
Posts: 649 | From United States | Registered: Dec 2003
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I do not blame you for being anxiose......or a little paniced.....
but please keep an eye on stuff that is happening to you....
like vjb said ....write it down.....
its better to treat early on......
I was in remission for years......this past year....i started to have symptoms.....as far back as last January.....
total denial........
august came........flat on the couch......not sure still......(I have other medical stuff going on too).....
just kept making excuses..... come december.....boom......its baaaacckkkk....
I wish that I did something at least back in August.....
watching your son go through this terrible disease I could see why you wouldn't want to go through this yourself..
but...better to treat early. mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I'm sorry and I feel for you.
I really hate band 41... I really do. I also only had band 41 come back positive. It's like a slap in the face since it can mean lyme but then it might mean something else. I was told once that all it could mean was either lyme, syphilis or gingivitis. But who knows really because now other people are coming out saying it could mean other things like mycoplasma or even co-infections.
It really is a let down. There needs to be more research on what these bands can mean or really DO mean.
Luckily, I ended up getting a co-infection test and Bartonella came back positive.
I don't know... no, band 41 doesn't mean positively that it's lyme (which, yes, is annoying and a let-down, at least it was for me), but I believe that I do have Lyme and we know I have Bart for sure. Unfortunately, I also believe I have Babesia as well since I have most of the symptoms for that.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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mtree
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There needs to be more research on what these bands can mean or really DO mean.![[Mad]](mad.gif)
and a let-down, at least it was for me), but I believe that I do have Lyme and we know I have Bart for sure. Unfortunately, I also believe I have Babesia as well since I have most of the symptoms for that.
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