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Posted 7/6/2015 9:30 AM (GMT -5)
May 20 got my first Lyme Test results back:

Elisa IgM/IgG REACTIVE
Western Blot IgG: Non-Reactive
IgM: Weakly Reactive


My family doctor got a letter that it wasn't a reportable case because the Western Blot was only Weakly Reactive and I needed to re do test in 4-6 weeks. (ridiculous, because I got a positive ELISA and reacted on the Western Blot) So I did the test again 5 weeks later just to prove to the doctor really. I did the test again a week after finishing 3 weeks of Doxyciline and just got my results back Negative for it all.

I'm scheduled to see my LLND for first time on Wednesday to start treatment.

From my research taking the test a week after doing 3 weeks of antibiotics would make a negative test result.

I have the cold sore virus and had a bout of it at the first test, could this of caused the positive?

Input Please!

Ps. Have not been feeling well for 5 1/2 years.

Post Edited (JessicaMommy) : 7/7/2015 12:37:45 PM (GMT-6)

Posted 7/6/2015 9:56 AM (GMT -5)
This is why we aren't supposed to be relying on the tests alone to diagnose these infections - they simply are not reliable enough.

The Lyme bacteria must be present in large numbers at the time of the blood/fluid draw in order to have positive tests. There is no good way to know exactly when that is for each person. Some have found out if they go in to be tested while they are herxing, it helps them to get a positive test, others have found that if they do 3 weeks of abx and then wait 3 -6 weeks (the length of time it takes for the bacteria to cycle inside of us) - that then they can get a positive - and some will never test positive.

This is all because a positive test result is all dependent on how well the immune system is functioning, because the only thing those tests that you mentioned are looking for are antibodies that are being produced by the immune system - not the bacteria itself.

So, yes, it's possible that because your body was fighting off the Herpes virus that causes cold sores (Herpes Simplex 1 or HVS1), that your immune system was up and functioning (or at least trying to) and was producing some antibodies at the time of your first test.

This in no way means that you don't have Lyme - only that your body isn't/wasn't producing antibodies to the bacteria at the time.

And, one last thing - It also depends on the Lab that was used:

Quest is the worst one for running these tests.

Labcorp is only slightly better.

Igenex and Stony Brook Labs not only make sure they use the right testing medium, but specifically train their techs to perform these tests properly.

This is why it's best to see those that have been taught these things - ILADS trained LLMD's.

Best of luck with your LLMD appt!! Be sure to take notes and to tell us all about it when you are up to it!
Posted 7/6/2015 10:03 AM (GMT -5)
Traveller- Do you mean that my first test could of tested positive because of the herpes virus instead of Lyme?
Posted 7/6/2015 10:28 AM (GMT -5)
No, only that the herpes virus got your immune system up and running at a high enough level that it actually started "seeing" and attacking the Lyme bacteria enough to produce those "weak" positives.

And I use the work weak with quotes because that's how most people see them. Any positive means that you have the infection since the tests are only looking for antibodies from the immune system attacking the bacteria - which it can only do when the bacteria is in the blood stream. The first order of business for the Lyme bacteria is to leave the blood stream and get into the soft tissues of the body - to hide from the immune system!!!

But, because your body was actively fighting the herpes virus at the time, some of the Lyme bacteria that was in the blood at that time was "caught" and destroyed, producing those ever so important antibodies by the immune system.

Did I muddy the waters sufficiently? smilewinkgrin
Posted 7/6/2015 10:49 AM (GMT -5)
Lol, thanks Traveller. I understand what you said better now! I was hopeful that my second test would come back positive to prove to my doctor it was Lyme. Even though my first test 100% indicates Lyme Disease....

Nothing would cause a "weakly positive" IgM western blot but Lyme Disease... along with the Positive IgG/IgM Elisa. Am I not right? That's enough proof right there, along with my symptoms and no diagnoses for 5 1/2 years... many many tests have been done.

Post Edited (JessicaMommy) : 7/6/2015 11:21:53 AM (GMT-6)

Posted 7/6/2015 10:51 AM (GMT -5)
So sick... can barley stand some days, completely off balance and hoping to get healthy.

Post Edited (JessicaMommy) : 7/6/2015 11:18:16 AM (GMT-6)

Posted 7/6/2015 10:55 AM (GMT -5)
Believe in your own words as they are correct and true - "Nothing would cause a "weakly positive" IgM western blot but Lyme Disease... along with the Positive IgG/IgM Elisa. Am I not right? That's enough proof right there, along with my symptoms and no diagnoses for 5 1/2 years... many many tests have been done."

And add to that if you were tested through Quest or Labcorp or likely other "regular" labs (opposed to Igenex) this is only one strain of Lyme that they are testing for out of the over 100 that are known to cause human illnesses!! Igenex and Stony Brook Labs test for 4 or 5 of the strains at least.
Posted 7/6/2015 10:57 AM (GMT -5)
Jessica - If a positive test is important to you...have you thought about doing the Igenex WB? It is a better test.
Posted 7/6/2015 11:06 AM (GMT -5)
I was tested through our local Public Health Lab.

Girlie - No I do not have extra money for testing at Igenex. Trying to get enough funds to get me through treatment with my LLND.

My LLND said my first results are Lyme. Regardless of that she said Lyme is a clinical diagnoses anyways. Even my family doctor said my first test results are def Lyme but then got a letter from CDC that I needed to re do it because of the western blot being weakly reactive. She was surprised. Have not talked to LLND about the second results yet as I just got them today and see her Wednesday. But I know the likely hood of testing positive a second time through these tests are slim.

Post Edited (JessicaMommy) : 7/6/2015 12:22:00 PM (GMT-6)

Posted 7/6/2015 11:20 AM (GMT -5)
Jessica - I read that if you're on antibiotics and want to test - you should be off the antibiotics 10-14 days before testing. Otherwise, you could get a false negative.

So, that could be why you got a negative the second time.
Posted 7/6/2015 11:22 AM (GMT -5)
For some people, Doxy seems to push the Lyme bacteria into it's cyst form (I know that it's better to call it by another name, but can't remember the name right now!) and into biofilms - where abx can't hurt it or kill it.

So while it does work in theory and for some people - there are others for which it doesn't work. Lyme "individualizes" itself for each body in this way. It attacks the weakest points, hangs out in places the immune system can't reach, or can't reach well, and more. This is a very complex bacteria and infection. We still don't have all the answers that we need for effective testing, treatments or anything else.

I'm very relieved to know that you are seeing a doctor that understand this and doesn't require a positive test!! I find if very disturbing to find out that there are ILADS trained LLMD's that require a person to have a positive test before they will take them on as a patient. That's soooo wrong! Even the CDC tells us not to rely on the tests alone!!
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