The Complexities of Lyme Disease (And How to Find Real Help)

— BY Corey Deacon | Reading Time: 4 min

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You’ve been suffering from multiple symptoms, have been labeled a chronic case and you suspect you may have Lyme disease. You’ve done the research (more than you ever thought you had to), consulted with some experts and you think you found an answer. Finally! 

You excitedly visit your doctor and explain your Lyme findings, yet as quickly as you arrive you leave feeling dismissed and unheard, without a diagnostic test. This thrusts you right back into the beginning of your health journey, shot down and feeling hopeless once again. You may have even taken a standard Lyme test which came out negative, even though you have every known symptom. 

We understand the rollercoaster of emotions this journey can create. This is sadly way too common among chronic health sufferers and it isn’t your fault. It’s no one’s fault. Lyme disease is complex and not easy to diagnose and many health providers are not well-versed in the complexities and research to help Lyme sufferers get answers and lasting relief.

Why Is Lyme Disease So Hard to Believe In? Why the Controversy?

Lyme disease has been the hot topic in literature, on Facebook and in the media, yet not every person believes in it—including doctors who may not even want to test you for it.

Why is there so much controversy and divided opinions on Lyme disease? This necessitates more than a one-sentence answer as the question is multi-faceted. 

Lyme disease is accompanied by a group of symptoms that relate to an infection called Borrelia. In conventional medicine, the definition of Lyme includes the existence of a tick bite followed by a bullseye rash. However, according to research, it’s thought that below 50% of people who contract an infection from Borrelia actually show signs of a bullseye rash. Fewer than half of Lyme patients even remember being bit by a tick.

bullseye rash from tick bite
The classic Erythema Migrans bullseye rash (Source: CDC)

The other mystery surrounding Lyme disease is that you can go on for a long time without ever experiencing common Lyme symptoms such as joint pain. In fact, it can be years after the initial infection until you develop problems. 

To make this puzzle even more complex to solve, in addition to ticks, Lyme is predicted to be sexually transmittable. 

In conventional medicine, the general consensus is that if no bullseye rash or flu-like symptoms surface after the tick bite, the patient is dismissed and no further care may be given. But, as mentioned before, symptoms can manifest long after the initial infection, especially in people who have good immune systems. Over time, this bacteria can invade different tissues in your body as well as the central nervous system (the brain) and even hide itself to evade the immune system. 

Not All Lyme Lab Tests Detect Lyme Disease

In a perfect world, there would be one Lyme lab test and every person who had Lyme would be easily diagnosed (one can dream!). Unfortunately, this isn’t the case. 

Most of the standard Lyme disease testing depends on the immune system’s response to Borrelia (detecting antibodies). One of these is the standard Western Blot test which detects the immune system’s response to the pathogen. But in chronic cases (3-6 months or more have lapsed since infection), antibodies can become low which is common in people who suffer from chronic Lyme because their immune system is affected.

To detect Lyme in more chronic cases, you need a more sensitive test. Some of the labs we recommend are:

Other Infections that Contribute to Lyme (Co-Infections)

There are also other complexities that make Lyme difficult to diagnose. Other infections transmitted by ticks and other insects can contribute to your Lyme symptoms. 

You can imagine how frustrating it feels when you have all of the telltale symptoms of Lyme disease (joint pain, chronic fatigue, autoimmune issues, muscle pain, weakness, neurological pain, gut issues) yet you test negative for Borrelia. You may even have a bullseye rash and still test negative. That’s because you may be dealing with between 34 and 42 other co-infections

Here is an overview of some of the infections that can contribute to Lyme symptoms:

  • Bartonella species – Cause cat scratch fever and trench fever
  • Babesia – Similar to malaria and causes fever and night sweats; inflammatory issues
  • Ehrlichia – Causes ehrlichiosis
  • Anaplasma – causes anaplasmosis
  • Rickettsia
  • Borrelia miyamotoi – causes another form of borreliosis different from Lyme Borreliosis
  • Borrelia garinii – causes another form of borreliosis different from Lyme Borreliosis
  • Borrelia afzelii – causes another form of borreliosis different from Lyme Borreliosis
  • And many more

What to Do if You’re Symptomatic But You Can’t Find Help

As mentioned before, Lyme disease is difficult to diagnose because of all of the reasons we mentioned in this article. This leads to infections becoming chronic and dragging on for years before your condition gets diagnosed properly. 

Because of all of these complexities around Lyme, not all doctors are trained in these principles, which makes it harder for you to get real help.

So if you think you may be dealing with Lyme or its co-infections, aside from getting personal education and educating your doctor, we recommend finding a provider who is literate in this discipline. You can start with the International Lyme and Associated Disease Society (ILADS) website which includes trusted information and a roster of highly-trained Lyme-literate doctors. You may even need to do your own private testing, which is worth it because it will be much more accurate than traditional testing.

Note that a percentage of people won’t recover from any particular Lyme disease treatment, including pharmaceutical and holistic approaches. That is because these people typically have Chronic Inflammatory Response Syndrome (CIRS), not Lyme. People with CIRS will have dysfunctioning immune systems which can also produce what we call polyclonal antibodies. These antibodies make it “look“ like you have Lyme disease when you don’t. You can even test positive for Lyme antibodies and not actually be dealing with the disease.

If you live in Alberta, our health center specializes in Lyme disease and we’ve had numerous people experience long-term recovery. Watch this video from our client Pam Purnell who suffered for 20 years with Lyme disease and was grateful to finally find relief. We are so proud of Pam and her progress!

Quote about Lyme disease from Pam Purnell
Quote from Pam Purnell

Here at Neurvana Health, we are dedicated to finding recovery for complex cases. If you’ve been searching for answers and trying to be your own doctor (we salute you for educating yourself) but you are tired of figuring it all out on your own, give us a call. We specialize in uncovering root causes of illness and we love adding more success stories to our family of wounded warriors. Call us today for a complimentary phone consultation with one of our trained health advisers. Relief is closer than you think!

Think you have Lyme Disease?

Find out how testing at Neurvana Health is different from other clinics who test for chronic Lyme Disease.