How to get to the bottom of your ‘mystery’ symptoms – even when your blood tests are all clear!
Lyme disease is a pesky and downright evil infection that comes from ticks. Most tick bites happen in late spring, early summer and autumn because these are the times of year when most people take part in outdoor activities, such as hiking and camping.
People who spend time in woodland or heath areas in the UK and parts of Europe or North America are most at risk of developing Lyme disease.
If it’s not treated early, Lyme disease can cause a host of symptoms that can truly devastate your health. Even worse, the disease can mimic other common illnesses, which means it all too frequently goes undiagnosed (or misdiagnosed).
We deal with a lot of Lyme disease at my surgery. It’s such a big deal and creates such tension between my patients and the conventional medical world that I sometimes refer to Lyme as a ‘dirty four-letter word’. The testing we currently have for Lyme disease is very problematic because it’s been shown to miss some pretty obvious cases of Lyme disease.
Patients who are feeling sick need to know that even if their bloodwork for Lyme disease comes back negative, that doesn’t necessarily mean they don’t have Lyme disease.
Don’t trust the results…
There are many people who have felt sick with a ‘mystery’ illness… possibly suffering with persistent and chronic flu-like symptoms… and they’re frustrated when they can’t get any help or feel any better.
Usually, when they ask their doctor if it’s possible that they have an infection (such as Lyme disease), they’re promptly dismissed – especially if they don’t have the tell-tale ‘bullseye’ rash (which, contrary to popular belief, doesn’t always occur).
And even if they’re not dismissed… even if the doctor agrees to run the test for Lyme disease… it’s infamously inaccurate.
The Lyme disease test has a very high false negative rate (as do lab tests for almost all chronic infections, including Epstein-Barr virus as I mentioned earlier in this issue) – meaning you could truly have a horrible case of Lyme disease, but get normal test results.
A spreading rash some days after a known tick bite should be treated with appropriate antibiotics without waiting for the results of a blood test.
Blood tests can be carried out to confirm the diagnosis after a few weeks, but these can be negative in the early stages of the infection. You may need to be re-tested if Lyme disease is still suspected after a negative test result.
In the UK, two types of blood tests are used to ensure Lyme disease is diagnosed accurately. This is because a single blood test can sometimes produce a positive result even when a person doesn’t have the infection… or blood tests can come back negative while you do in fact carry the virus.
This can happen partially because your immune response requires time to develop antibodies. If the test is done before you’ve produced enough antibodies to be considered positive, you’ll get a negative test result.
But that doesn’t mean you don’t have the disease.
A patient might walk into their doctor’s office with every single symptom of Lyme disease and if their blood test comes back negative, the doctor may deny them antibiotics, further testing, or even further discussion on the subject.
The doctor might even say, “I told you so!” and never consider Lyme disease (or usually any other infection) again.
As always, it’s up to patients to do the legwork and to keep pushing their doctors to give them treatment they need and deserve. If you have post-infectious Lyme disease or long-lasting symptoms, you should insist on seeing a specialist in microbiology or infectious diseases. These specialists can arrange for blood samples to be sent to the national reference laboratory run by Public Health England (PHE), where further tests for other tick-borne infections can be carried out.
The fact is, doctors need to remember what we were taught in medical school: treat the patient, not the numbers. Most doctors are relying way too much on the results of blood tests rather than actually LISTENING to their patients.
Every day, I hear patients complaining that their conventional doctors don’t listen to them and instead spend most of their time staring at their computers screens… without even looking at their patients in the eyes.
Now, I don’t want to sound like a fuddy-duddy, but it seems like medicine is becoming so mechanised with computers and blood testing that doctors are missing the point: they’re not using their brains, and they’re blatantly ignoring what is right in front of their eyes (maybe because they’re looking down at their screens).
Wishing you the best of health,
Dr. Glenn S. Rothfeld
Nutrition & Healing
Full references and citations for this article are available in the downloadable PDF version of the monthly Nutrition and Healing issue in which this article appears.