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07/28/2009 10:11 PM

my test came back negative

tee990
Posts: 1
New Member

Hi all,

Im new on here and just wanted some advice. All my lyme tests came back negative except my titer was a little elevated. The docter put me on doxy for three weeks but it did nothing what so ever. My symptoms include fatigue and joint pain but besides that im healthy. I've had pain for almost 4 moths now and the doctors have no idea what it is. Im just wondering if this is lyme or some other disease. any advice suggestion would be greatly appreciated.

Post edited by: tee990, at: 07/28/2009 10:11 PM

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07/29/2009 01:34 AM
cwatts1968
 
Posts: 24
Member

You need to make sure that you get the "right" test. Some tests come up "false negative" but this doesn't mean that you are clear of danger.

At one time, IgeneX Labs generated the most reliable test results. Now, even if you test negative at IgeneX, there is another place that may be able to provide you with an even more reliable result. Central Florida Research (www.centralfloridaresearch.com). It might be a better place to begin with because a lot of us aren't producing antibodies to infection and which is how IgeneX and a lot of other labs use. CFR testing uses positive ID of borrelia in its blood sample.

Another way is be having a CD-57 test locally. If you are using a local lab this one might be more acurate. With this one a score of less than 60 indicates severe infection, and anything less than 200 means that a borrelia infection is present. Normal results are 200 or more. The lower the number the greater the chance of relapse if you end the treatment too soon. The only bad thing is that it doesn't let you know how fast or how much your healing because the number might not change until after the infection is well-contained.

The newest testing methods are Cytometry (Central Florida Research) and Immunoflourescent Assay (Fry Laboratories in Arizona. Even as new and advanced this testing is, as with other lyme tests, even if you have the disease you may

    still
test negative for the presence of bacteria, though the chance of it coming up negative is lower with flow cytometry than with other testing methods. Another benefit of CFC is that some insurance companies, including Medicare, will cover its testing prodedures.

Fry Labratories uses the Immunoflourescent assay. It is a serology test. It checks for babesia, bartonella, and ehrlichia. It identifies both foreign infectious agents as well as and antibodies to co-infections so they can detect infections that are there. It is a stain smear test which means that they look at a sample of cells to find antibodies to other autoimmune illnesses.

You can get all of the tests together for about $500 which isn't covered by most insurance plans, but you can get one or more tests done by Fry Laboratories which would be worth it because most local labs do not have the equipment to accurately get results.

I know this is long, but I am always looking up stuff when I need the information and my friend's daughter needed to be tested for lyme because she had a bullseye rash. She thought that because she lives in the city that there couldn't be a chance but I told her that it can be caused by not only deer ticks in the northeastern United states. It could be caused also by fleas, mosquitoes, mites and other bugs that carry infections. It can also be carried by white-footed mice, chipmunks, horses, birds and even your family dog. Some people say that all dogs in the United States have a good chance of carrying the infecton due to the fact that it can be passed on genetically.

So, here you go. Long, but I hope informative. Good luck and I pray that your tests (whichever) will come out "true negative".

Carolyn


07/29/2009 08:14 AM
cmany
cmany  
Posts: 6930
Group Leader
I'm an Advocate

Carolyn...

Actually the CD-57 test is not entirely accurate at all. It is more or less a gauge for those with a severely chronic infection...but it does fall short. Many will test within normal ranges but be very very ill - while others who are doing well have been known to test below the norms...

So it is used more to help determine progress of an active aggressive infection.

But ultimately...there is no single test that holds 100% accuracy...which is why Lyme is a clinical diagnosis...

tee990 - if you would like help finding an LLMD/ND please pm me with your location and how far you can travel - as regular docs will only proceed so far - if at all

Christine


07/29/2009 09:16 AM
dharma79
dharma79  
Posts: 1180
VIP Member

Tee-

3 weeks of Doxy is NOT enough to help you. It is the Lyme that continues to haunt you.

Please PM Christine with your location and how far you can possibly travel, and she can help you find a doc who is Lyme Literate.

Good Luck! Look around here in the forums for some wonderful information...

Wink Cool Cheerful

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