Navigating Lyme Testing: Understanding CDC Guidelines and My Personal Experience

This particular topic has played a vital role in my journey with Lyme and as I write this post it brings up so many emotions. When getting tested for something, you think it's a simple answer...you're either positive or negative, but that is not the case with Lyme. Navigating the world of Lyme disease testing can feel overwhelming. Many patients, including myself, have faced confusion and frustration with the current diagnostic practices and the guidelines set by the Centers for Disease Control and Prevention (CDC). Despite Lyme disease being recognized for decades, the challenges surrounding accurate testing persist.

The Limitations of Lyme Disease Testing

When I first sought help for my symptoms, I hoped for quick answers through testing. Unfortunately, I learned that testing is not always straightforward and not all healthcare professionals are familiar with Lyme disease.

The CDC recommends a two-tiered testing approach, starting with an enzyme-linked immunosorbent assay (ELISA) test followed by a Western blot test for confirmation. However, studies suggest that the ELISA test can miss up to 50% of Lyme cases, particularly in early-stage infections.

After undergoing these tests, I received a positive ELISA result which means I have antibodies for Lyme bacteria. Once I tested positive on ELISA they used my blood sample for the second test, the Western Blot which is used to see how many bands you have. This is the crazy part...my results produced three bands on the Western Blot which in theory you would think I'm positive for Lyme disease. Well in November of 2023 when I was first tested, my neurologist called me with the results and told me there were inconsistencies in my results and I don't have Lyme. You can imagine the questions my husband and I had regarding this along with the confusion and frustration, it made no sense to us. Let's just say the archaic guidelines of the CDC did me no favors and because of their guidelines, it caused a delay in my Lyme diagnosis leading to more severe symptoms.

The Role of CDC Guidelines

The CDC guidelines were created to standardize diagnosis and treatment. However, they have faced criticism for being rigid and not fully considering individual patient experiences.

In my case, the emphasis on strict testing criteria made many healthcare providers hesitant to diagnose Lyme disease including my neurologist and my PCP. My neurologist informed me that I needed five bands on the western blot to be considered positive for Lyme and because I only have three, my results are considered to be negative or inconclusive. He said this was standard CDC guidelines and that's what his office goes by. We were in disbelief because why on earth would I have antibodies for Lyme bacteria at all let alone antibodies plus three positive bands? It made absolute no sense to us but at the time we were not familiar with Lyme and kept going down the road of trying to figure out what was wrong if it wasn't Lyme.

The Struggle for Accurate Diagnosis

In January 2024, I started experiencing severe symptoms where I was having trouble communicating and was seeing double. I ended up in the ER with these symptoms...My husband mentioned my Lyme results to the ER doctor and her response was baffling...she said, "Lyme testing is highly inaccurate and she doesn't have Lyme so I'm not going to waste time testing her for it". The ER doctor ran regular blood work/standard test, gave me a bag of fluids and sent us on our way. I ended up with short term paralysis, not

being able to walk, talk and was bedridden for three weeks after that visit. Fast forward to the beginning of March 2024, I saw my PCP for my annual physical and asked her to test me for Lyme. I explained everything that had been going on so she did the two-tiered test approach and my results came back the same as before...positive antibodies and multiple bands but she referred me back to my neurologist since the results were the same. However, she also referred me to a rheumatologist because she thought I may have an autoimmune disorder based on my symptoms. The ping ponging between doctors continued as I kept getting passed from one provider to another. As you can see, there is hesitation with diagnosing Lyme on the behalf of healthcare professionals when it doesn't fall under their medical umbrella/specialty and all they have to go by is CDC guidelines. This inconsistency and the lack of understanding surrounding Lyme made my battle feel isolating.

The Quest for Alternative Testing

Due to Divine intervention, my path changed and we were put in touch with an amazing integrative doctor that specializes in Lyme. She wanted to do a more advanced type of testing for my case and of course we were on board. She recommended a specific lab which does blood smear imaging of your samples. My labs were sent to T-LABS in Maryland and it took 6 weeks for results to come back but when they did, it gave us concrete answers as to what I was facing. You guessed it...positive RNA for Lyme bacteria! It's amazing to think how far we have come with modern technology and the images are fascinating to see. From a patient's perspective, it's so frustrating to think this testing could have been done back in November 2023. (Another advanced testing a lot of Lyme patients have done is the IGeneX testing) It's easy to point fingers and play the blame game but in reality, the doctors I saw were not well versed in Lyme (at that point we were not familiar with Lyme either). It's not their area of expertise, so how would they know to push for these other testing options?

Moving Towards a Better Future

My experience with Lyme disease testing and the CDC's guidelines has been filled with obstacles and learning opportunities. It is crucial to recognize that the existing testing and diagnostic frameworks do not accommodate every patient’s journey.

Through advocacy, education, and collaboration, we can work towards significant improvements in the way Lyme disease is handled. Sharing experiences and supporting one another can lead to a future where better testing, diagnosis, and treatment options are accessible—where no one feels voiceless.