This summer marks 18 years I’ve been been sick and 11 years since I became disabled.

One of the most frustrating parts of this illness is how poorly it is understood.

If you know someone with Lyme (or who is chronically sick and doctors don’t know why), take the time to watch the video below.

This is Dr. Steven Harris – one of the leading Lyme disease experts in the world. He has been my doctor for 10 years.

Want to know more? Watch additional videos by clicking the link below and then click on “The Journey” – select from the list of topics.

Dr. Steven Harris, MD, Lyme Literate “The Big Picture”

In this video:

Lyme disease is the most common vector borne disease in America.

Lyme disease is not a simple, single infection (borellia burgdorferi is the bacteria that causes Lyme disease) but a multiple systemic intracellular infectious disease syndrome – multiple organism and immune system disfunction create a complex disease process.

Lyme disease is a clinical diagnosis – which means that if you have symptoms and have excluded other causes, and you respond to treatment, that’s your diagnosis (testing is unreliable and should never rule out Lyme disease).

Lyme disease is under diagnosed largely because our bodies do not induce a significant immune response during the period of time when testing is most likely to show positive (2-8 weeks after bite).

Psychological & emotional ramifications are significant not only from physical nervous system dysfunction but also from:

• Not being believed
• Having 1 good day followed by 5 bad days
• Feeling like you’re dying in 14 different ways
• One day you can walk and the next day you can’t
• One day you can eat – the next day you can’t – the next day you don’t want to – the next day you eat double

“The fluidity of this disease is so mind-boggling that people get their mind boggled”

“The end point with Lyme is often so nebulous and gray, the unknown, the not knowing, the feeling that your better and then having symptoms come back or a new symptom or 30 symptoms all scream at one time on the same day, and then in the afternoon you have an hour free but it comes screaming right back at you – it’s nearly impossible for everybody to stay emotionally fundamentally intact”.

The financial impact is completely unfair – medicines aren’t covered, tests aren’t covered, alternative treatments (which are critical for many patients) aren’t covered.

We really need improvement in the understanding of Lyme disease as a chronic illness.

There can’t be standard studies because those require commonality (a single disease that causes like symptoms and can be treated with like protocols). Lyme is multiple infections and multiple conditions, causing varying symptoms in a host body that responds differently from person to person – how do you create a study for that?

If you’ve learned something from this post, please talk with others about it so we can continue to educate people on the devastation and misunderstandings of this wicked sickness.