posted
Thanks for your help. I've been so sick that I'm basically housebound and can't work.
I see a doctor who knows a lot about Lyme but I'm not sure if he's an LLMD.
I'm trying to figure out if the results of this test warrant the money involved and also warrant being on antibiotics.
I also have relatively high EBV and somewhat high HHV-6 titers.
I don't understand how I can be so sick but have such a non reactive test if I have lyme?
I'm trying to do some reading online but my brain just doesn't function like it used to and I'm unable to retain information very well.
I appreciate any help.
Posts: 65 | From CA | Registered: Jun 2008
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by celtic:
I also have relatively high EBV and somewhat high HHV-6 titers.
I don't understand how I can be so sick but have such a non reactive test if I have lyme?
Many people with lyme also have EBV and HHV-6.
Also, many of the sickest people don't have positive lyme tests because they've been sick so long their immune systems are so weak they are not able to make the antibodies that would normally show up on these tests... OR their immune systems long ago stopped making the necessary antibodies to fight the infection, etc.
My test was more confusing than yours, as I only had one positive band ++ but not a specific band, so yes, this disease can be very confusing. It's good you are doing a lot of research for yourself.
I'd make sure your doctor is a LLMD though because if he's not he probably won't be willing to treat lyme long term. That, and he may not know about co-infections and they are a big part of lyme disease and have to be cleared up before you can get well.
-------------------- 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
| IP: Logged |
I have names of some LLMD's so will check into that.
Are you making good headway as far as recovering?
What labs are good for testing for co-infections?
I don't know what to think about anything.
I didn't know people with lyme also can have viral issues so that's really good to know.
Posts: 65 | From CA | Registered: Jun 2008
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Looks very suspicious of Lyme to me as well. I would get co-infection testing and CD57 done to get some additional data. I think the result is enough to start working with an LLMD if you are not already.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
Where do I get the CD57 test? I just tried looking it up under the lab my insurance co. uses but it wasn't listed so it looks like I'll need an outside lab.
Posts: 65 | From CA | Registered: Jun 2008
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Celtic - Lab Corp tests for CD57. When you see a LLMD that is probably one of the tested they will want to run as well as co-infection testing, etc.
-------------------- 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
| IP: Logged |
I posted there as to what the majority of my symptoms are.
I don't have much pain at all. The only pain I have are usually from a headache or from the arthritis pain that I have that comes and goes, etc. But mostly, I do not have pain. And I am very fortunate in that way. I know some people who have constant pain here.
-------------------- 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
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
The fact that your pain has gotten worse on antibiotics sounds like a herx.
Another possible indicator of Lyme.
Not having many bands show up doesn't mean you don't have Lyme.
In fact my LLMD said often his sickest patients have the least amount of bands show up.
Remember, it is an antibody test.
More bands means your body is trying to post an immune response to the infection.
Less bands cam indicate an immune system that is being overwhelmed.
I was diagnosed with only one Lyme specific band and 54/75 symptoms.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic