Slightly edited for length. Comments follow.
Why Blood Tests Don’t Always Work For Chronic Lyme Disease
As most doctors and patients know, Lyme disease is a tricky thing to diagnose conclusively. Chances are that many patients didn’t just walk into a doctor’s office and get diagnosed with the disorder; they more than likely went through a number of different diagnoses before their doctors settled on Lyme. Unfortunately, there are many cases that don’t even make it to a successful diagnosis. This is due to combined problems of doctors not being fully literate when it comes to Lyme, compounded by the fact that many Lyme symptoms mimic the symptoms of other degenerative diseases, such as MS and fibromyalgia. As a result, many cases go undetected and misdiagnosed by medical professionals, to the extent that the cases of Lyme reported across any given year are expected to be drastically underestimated. A method does exist for the definitive detection of Lyme, but unfortunately these blood tests don’t always work for chronic Lyme disease.
The test is often relied upon by doctors as a foolproof diagnostic device. It’s known as the ELISpot, and measures the amount of borrelia bacteria present in the patient’s system on a cellular level, which is the key bacteria that produces Lyme. However, while this may sound good in theory, its effectiveness gets called into question when you consider the effects of chronic Lyme disease. The bacteria are certainly a big part of it at the start, in what’s known as the acute phase. Early-stage symptoms consist of flu-like symptoms and a distinctive rash known as a bullseye rash, which forms in about 50% of cases. At this point, the borrelia bacteria is very present in the system, and the symptoms are caused by the body attempting to mount some defence against the foreign invasion.
A round of antibiotics will usually stop the infection in its tracks if it’s caught early and identified correctly as Lyme. However, if the infection is given a chance to further infect the system, then the results can be devastating for patients. It is not that hard for the infection to develop to its full-blown chronic stage, as once the flu-like symptoms and rash subside, the Lyme infection can lay dormant for weeks, months or even years, making it easy for the patient to write off their bout of illness as a simple case of the flu. When it inevitably does reemerge, it presents with a completely different set of symptoms than the primary iteration. This is because the bacteria have had a chance to become fully entrenched in the body, and the immune system has gone into overdrive. Many of the symptoms associated with chronic Lyme disease, including joint pain and constant fatigue, are a result of an overactive immune system, which perpetuates inflammation responses all over the body.
Once the specific effect of chronic Lyme disease is understood, it becomes easy to see why the ELISpot blood test doesn’t always return a positive result, even if the patient is suffering from Lyme. The test only registers the presence of the borrelia bacteria, and does not take inflammation into account. Each case of Lyme is different, and dependent on the patient’s reaction to the initial infection. Therefore, if the patient is suffering more from the infection effects, then the ELISpot will likely come back positive, and treatment can begin. If, however, the level of bacteria is low but the level of inflammation is high, the ELISpot might well come back negative, leading doctors to assume there’s no trace of Lyme, resulting in misdiagnosis and further debilitation for the patient down the road.
Diagnosing chronic Lyme disease correctly is absolutely key to treating it effectively. The inflammation symptoms are important for both patients and doctors alike to understand, as they hold the key to a proper diagnostic plan and subsequent treatment path. It should also be noted that blood tests can fail if initiated too early in the disease’s lifecycle, as the disease hasn’t had a chance to fully register in the body’s system yet. The CDC cautions that test results can be misrepresented in the first four to six weeks after infection, making it tough for doctors to diagnose the flu-like symptoms as Lyme in the absence of a specific test. In the acute stages of the infection, the bullseye rash is the single best indicator we have; if that’s present, there’s little doubt the patient has Lyme, and treatment can begin right away.
The latter stages of Lyme are where things get complicated. Luckily, there are plenty of doctors out there who are fully Lyme-literate, and can get their patients the treatment they need. Although the nuances of this debilitating disease are tricky to navigate, with the right information, tests and doctors alike to understand, as they hold the key to a proper diagnostic plan and subsequent treatment path.
Although the nuances of this debilitating disease are tricky to navigate, with the right information, tests and treatments, we can effectively fight back against it.
The title of this should be, “Why Blood Tests Hardly Ever Work for Chronic Lyme Disease.”
There is NO foolproof diagnostic device or test for this, but there IS a validated questionnaire that doctors should be utilizing: https://madisonarealymesupportgroup.com/2017/09/05/empirical-validation-of-the-horowitz-questionnaire-for-suspected-lyme-disease/
Questionnaire here: https://madisonarealymesupportgroup.files.wordpress.com/2016/01/symptomlist.pdf Print & fill this out, and take to your doctor. Educate them about this.
Diagnosis for Lyme/MSIDS has always been and continues to be a clinical diagnosis. Period.
I remember a conversation I had with Dr. Hoffman, probably the most experienced LLMD in all of Wisconsin, who treated this before it had a name. He told me that the sickest patients NEVER test positive. Chew on that one for a while.
The EM rash IS diagnostic for Lyme and treatment should be given, but please know the percentages used on people getting the rash are falsely skewed, with far less getting it than is touted: https://madisonarealymesupportgroup.com/2019/02/22/why-mainstream-lyme-msids-research-remains-in-the-dark-ages/. In fact the percentages range from 25%-80% –
Hardly a sure thing
Testing the blood for borrelia has been proven to be abysmal – pretty much at every stage. The window is so small that only a handful of those infected are getting positives, despite the CDC worrying about false negatives. Trust me, there’s few false negatives. As Dr. McDonald aptly states:
“If false results are to be feared, it is the false negative result which holds the greatest peril for the patient.” –Alan McDonald, Pathologist
If you study the organism for 1 minute, it’s clear that it is a stealth organism that shape-shifts to avoid the immune system. It also doesn’t hang out in the blood for long. It prefers the brain, spine, synovial fluid, and your organs – places that are hard for treatment to reach, your immune system to access and certainly for blood testing to pick up.
While there is inflammation, the jury’s still out on what is causing what, with plenty of scientific evidence (700 peer-reviewed articles) to show persistent/active infection – not just inflammation: https://www.ilads.org/wp-content/uploads/2018/07/CLDList-ILADS.pdf
So the fact that blood testing won’t pick up an infection is not solely due to everyone having an inflammatory response. It can also include the fact there is ACTIVE/PERSISTENT infection that is buried in the body far away from the blood.
For a great read on Lyme testing: https://madisonarealymesupportgroup.com/2018/09/12/lyme-testing-problems-solutions/
And then there’s the issue of coinfections, all requiring different testing – ALL of it just as poor.
Lastly, all of this points to something quite sinister. Why have authorities controlled testing for Lyme and insisted on using blood serology when it is so abysmal? Going down that rabbit hole reveals an entire ugly, dark saga of fraud & collusion, with patents on testing & vaccines owned by the very authorities making all the rules. ConflictReport (A lengthy expose on all the dirty deeds done dirt cheap)
There is a current lawsuit due to the suppression of microscopy (direct testing) which is far more accurate: https://madisonarealymesupportgroup.com/2018/05/15/news-release-on-57-1-million-lyme-disease-lawsuit-filed-against-cdc/
This article also reveals how Lida Mattman’s Gold Standard Culture Method has disappeared thanks to this concerted suppression on microscopy. https://madisonarealymesupportgroup.com/2019/04/02/transmission-of-lyme-disease-lida-mattman-phd/
Things desperately need to change in Lyme-land.