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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?

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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.
 

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Posted by celtic (Member # 15850) on :
 
Thanks again disturbedme.

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.
 

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Posted by SForsgren (Member # 7686) on :
 
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.
 

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Posted by celtic (Member # 15850) on :
 
Hi Scott,

Thanks for your input.

What labs are good to test for co-infections?

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.
 

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Posted by disturbedme (Member # 12346) on :
 
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.
 

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Posted by celtic (Member # 15850) on :
 
disturbedme-

cool. Thank you for the info. I wrote it down so I'll remember.

I just read your lyme story. Wow. I could relate to a lot. It' really good.
 

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Posted by celtic (Member # 15850) on :
 
Can one have lyme with no pain?

The only pain I have (aside from pain now and then in my finger joints and neck) is bad, bad shoulder pain.

I just had an MRI of my shoulder to see if there is a torn rotator cuff. The pain has gotten worse since taking antibiotics. I can't even sleep on it.

I have a lot to learn about lyme.
 

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Posted by disturbedme (Member # 12346) on :
 
Celtic - Yes, you can have lyme and no pain.

See this post:
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=068304

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.
 

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Posted by Geneal (Member # 10375) on :
 
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
 

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Posted by celtic (Member # 15850) on :
 
Thanks geneal.

Should I treat lyme and viral issues at the same time?

I guess the LLMD will make the decisions.

Is there hope?
 

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Posted by bettyg (Member # 6147) on :
 
celtic,


fry labs, arizona, is good with co-infection testing and cheaper than igenex in calif.


see my newbie package, and do a search...

edit, find, and type in fry labs
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THERE IS ALWAYS .... H O P E ..... unless YOU chose to give up! best wishes; and we are here for you ok!
 

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