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Negative Culture Test

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Posted 9/12/2012 1:32 AM (GMT 0)

Hi I am new here.  Finally got my lyme culture test back today and it is negative!  So frustrated.  I've been seeing a LLMD for about 3 months now and she suspects I've had lyme for about 1 1/2 years, but I haven't received a positive test yet - all inconclusive results.  My CD57 count is 18, very low, so something is definitely going on!  Just very frustrated with the process.  I can't seem to get any answers.  I have a lot of neurological symptoms, have seen 8 doctors, two MRIs, have a brain lesion, numbness/tingling, chronic pain & fatigue, brain fog, etc.  Advice/help?  Thanks!

Posted 9/12/2012 8:57 PM (GMT 0)
Hi,

I might be wrong, but as far as I know it is almost impossible to culture lyme disease in a lab unless it is taken directly from a skin lesion. I am surprised a lyme expert would do such a test.

Lyme disease is often diagnosed by a combination of symptoms and response to antibiotics as many of the tests are innacurate. You really need both, as the symptoms are pretty vague and can be caused by any number of other illnesses. Check out the 'new to lyme' thread as this has lots of helpful info.

Good luck finding a diagnosis,

Kirsty

Posted 9/13/2012 1:43 AM (GMT 0)
Hi mfjohnson - welcome to the forum! I'm sorry to hear you're dealing with all of this frustration - I wish we could give you all the answers! I've yet to come across any information on the reliability of this test - we know that this bacteria can take multiple forms, so perhaps the culture test can't detect all of them. We also know that the bacteria can hide out in biofilms. A negative test might not necessarily mean no lyme.

Does the treatment you're following with the LLMD seem to be helping? Frustrating as it is, with medicine sometimes we can never really get the answers we need, and all we're left to do is stick with whatever works, whyever it works.
Posted 9/13/2012 5:39 PM (GMT 0)
johnson,

I also received the results of my culture test (Advanced Labs) on Friday and it was negative. I have tested positive through Igenex at least four of five times. I also have lesions on my brain (20+...and that's not a typo), numbness, tingling, lots of neuro symptoms. I spent a year on ABX treatment and made progress but have been off now for a year. I am now awaiting test results from Igenex Labs that I took last week. It will be very interesting to see what the results of that were.

Have you tested through Igenex?

You are not alone.....I felt like crying (I did actually) over my culture lyme test...made me doubt this whole lyme thing because I worry about MS ALL the time!
Posted 9/13/2012 9:47 PM (GMT 0)
Hi MFJohnson
Welcome to our little spot! If you havent' yet, please do read through the "New to Lyme? Start Here!" thread that sits at the top of the forum. It's packed full of important information, links, symptoms lists and even a post on how to detox when you have these infections! Detoxing is really important when you have these infections, as it's the toxins that are being released that drive our symptoms.

It's not uncommon to test negative on any of the Lyme disease tests, if for no other reason than there are only a small number (4 or 5) of strains of the bacteria being tested for, even though there are at least 100 different strains here in the US alone, 300 world wide! It's no wonder there are so many false negatives! That's not to mention the fact that the Lyme bacteria loves to hide out in the muscles, joints, organs and even the brain where a blood test of any kind can't find it!

What is your LLMD saying about your negative test result? Are you having trouble getting information from your doctor? Chance are we can help you with learning what you want to know about these infections, and learning what you can about them will only make you a better patient!!

We have such a wonderful group on here, and they are great at helping others to figure out what's going on. So don't hesitate to ask your questions! We also have a great search function here to help you locate threads that pertain to you and your situation.
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