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Can there be false possitives on lyme test?

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at first she tested possitive and then the next test was negative but she still had all of the symptoms that we are trying to rid her of. we are not sure if she ever had lyme/bart. since being on treatment has not helped in over a year. can i have your thoughts???

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which bands were +? It really goes by the bands, some bands that constitute a CDC positive test cross react with other LLMD's generally consider 18, 23, 30, 31, 34, 37, 39, 83 and 93 specific for Lyme. if they IGG or IGM, and are + or IND, they can correlate a clinical diagnosis of Lyme. It doesn't matter how many of these, they just look for these bands.

 

Unfortunately it can take years of treatment but if you are still seeing lots of symptoms, and Lyme is in the picture, it sounds like the treatment is not working or there are other issues, co infections, yeast etc that are interfering with recovery.

 

In my DD's case we have a few remaining symptoms but most are gone. However she definitely still has it as I tried something different recently and symptoms rapidly came back.

sorry I feel your frustration. I would be lying if I said I don't get depressed about how long this takes to treat!

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Yes, Hopeny is right. In fact, I am suprised that your doctor would retest so soon especially if you are still seeing symptoms. Our LLMD said that the more chronic the lyme the less likely you are to see a positive. So it's possible to get a negative test and still have lyme. That's why lyme is a clinical diagnosis. If you have seen one positive and you have corresponding symptoms I would not doubt the results. I would be more likely to doubt the negative results. Unless of course your child appears to be well and symptom free.

 

Dedee

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the lyme doctor said she had all the bands to say that its lyme/bart. but i was wondering if the test could be wrong. another practicioner the other day said if your test is possitive it is definitive that lyme is present. no question about it. i was just wondering....

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Yes, it absolutely can be wrong. The test result reports themselves indicate that a chance of a false positive IGM result is high in individuals with symptoms lasting more than 4 weeks or so...(even IGENEX states that) IGM easily fluctuates between positive and negative due to cross-reactivity. Mine does that.....one month positice (IGM only by CDC)...the next negative...and so on...never positive IGG though. If you have been treating a positive IGM, and that is what you are referring to being positive and then negative, I would suggest seeking further opinions outside of LLMD's. A positive IGG is much more diagnostic for Lyme etc. My suggestion would be to start with a clean slate (mind)..... get the test results in your hands and do your own research according to those results without posting them publicly because you can easily be swayed.......seek opinions from docs...both a LLMD and an infectious disease doc.....you gotta look at both sides....weigh carefully...and then decide.

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I'm not a lyme expert - just a PANDAS mom, but I will relate our experience with lyme testing.

 

My son is classic, textbook PANDAS. Only reacts to strep, no other infections/viruses, but has had chronic strep over the last 3 years, hence our struggle. We have never had any reason to suspect lyme. He has always responded well to abx, but has consistently caught strep (positive rapid and grown cultures) even while on treatment doses of abx.

 

One of our PANDAS specialists ran a standard CDC Western Blot for Lyme on our son as a new patient last year as a matter of standard procedure. It came back positive for multiple bands (don't recall off hand which ones, sorry). We were all shocked, based on his history we did not expect a positive result.

 

Based on those results, he requested Igenix testing for Lyme/co-infections to see what we were dealing with. Those tests (at great out of pocket expense) came back negative across the board for Lyme.

 

Because of the conflicting results, a few months later, prior to going for IVIG, another full Igenix panel was run (again, at great out of pocket expense) and again it was negative across the board.

 

I have read/heard a lot about how unreliable the CDC test is for false negatives for Lyme, but based on our experience, we were hit with a false positive. We still have no reason to suspect Lyme, and my son has responded wonderfully to IVIG, with little/no "turning back the pages" so often reported. And the last round of labs prior to IVIG indicated that he is not producing 6 of the 14 antibodies for strep - which may contribute to our chronic strep problem.

 

We have opted not to pursue continued Lyme dx or treatment with an LLMD because it does not seem to make sense in our case. We have never seen any symptoms that were not directly related, or shown improvement with PANDAS treatment.

 

That being said, I know that there are other varying opinions on the matter, and I am simply offering our personal experience.

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Tests for antibodies to an infection are like a tracker looking for clues that his prey has passed that way on the trail. These tests look for whether the body made antibodies to bacteria that make certain proteins - either recently (generally IgM) or less recently (generally IgG). Some bodies are so weak, they don't make sufficient antibodies to show up as a definite band on the test (just as some bodies don't make adequate antibodies against strep to show up on an ASO or AntiDNase B test). These tests look in the rearview mirror - what has the body seen and reacted to in the past. So arguments have raged here and on other boards over the accuracy of antibody testing and other methods of testing.

 

So as others have said, what matters is the clinical picture plus the labs as clues. It's true for Pandas, true for Lyme, true for other diseases. What also matters is what you point out - is the patient getting better? If not, is it because they don't have that disease? Maybe. or is it because they have something else that's keeping them sick, or immune dysfunctional, and preventing them from responding to the treatment? Is the doctor looking at other angles, customizing, sluething for clues, or using a generic approach that usually works for most people? These are questions lots of us have faced over the years. None of us has the answer for your child. We can only share what was true - or true for now - for our own kids.

 

So I only post to toss out other ideas to consider, things that helped my kids. Allergies, including mold and dust mites, were a road block for my daughter. Once we bought mattress and boxspring and pillowcase encasement covers, her allergy issues greatly improved as did her overall health. Others have found the same when they uncover mold in a basement, attic, bathroom, under carpeting, around a leaky window - that they swore wasn't an issue. My son was treated fro Pandas (Pex and IVIG and tonsillectomy and lots of abx), then for lyme (lots more abx) and he did get better but kept hitting a wall. We then found a condition called pyroluria - a zinc/B6 deficiency - and treating that made a huge difference. He then did much better fighting lyme. Both my kids have also gotten better by addressing methylation issues. So these might be things to talk to your doctor about.

 

It's very complicated and it stinks that you have to do the digging, but being detective/blood hound has paid off for a lot of us. So aside from is it lyme or not, you can also explore is it lyme plus something else, or is it strep plus something else. Unfortunately, sometimes this is a multiple choice question.

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I will have to say that I agree with much of what LLM is saying. Unfortunately, much of this is trial and error. Sounds terrible to say out loud when discussing treatment of our children. I have 3 PANS children. They all fall on three different places on the continuum (if you will). My oldest is strictly a strep responder. He doesn't get worse with a cold or virus, only if he get's strep or someone in our family gets strep. I have investigated the possibility of lyme with him, even did a trial period of treatment for lyme and got nothing, nada, zilch in the form of a response. Clearly he is what we initially believed....a PANDAS kid. My middle child responds to strep and the flu but not small viruses. His lyme test is boarderline even by ILADS guidelines. He has shown some improvement on lyme treatment but it's not clear if it's because he also had Mycoplasma and he cleared the mycoplasma while treating the lyme. So the LLMD says it's possible he is just a PANDAS kid that got mycoplasma or maybe he does have lyme. We are still on the fence with him as he is not my most significantly ill child. My youngest daughter is severly ill. Her strep titers have never been extremely elevated, only slightly. Since her initial exacerbation her mycoplasma titers have been elevated and her first lyme test was through Igenex and was positive by ILADS guidelines. So each child can be different and you have to make your observations as a parent, and go with your instinct as to what works for your child. Sometimes we make mistakes and go back to the drawing board. But most importantly to remember is that usually the parents are the best judge of the situation. We may all be doing something slightly (or not so slightly)different from the next person in terms of how we are treating our kids but it's still the right thing for our situation. Best of luck to everyone on this path.

 

Dedee

Edited by Dedee

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