Why do you use “BorreliaEtc” instead of just saying Lyme, or Chronic Lyme?
I get asked this a lot and the whole answer is long-winded, so I promised my second post on this site would be about it and said simply: it’s time we left Lyme and the stigma it carries behind.
Those of us with tick-borne infections use the name “Lyme” all the time; it’s what most other people recognize and are exposed to at least a concept of – even as we try so hard not to gross out friends and family with articles that bear huge ticks on the cover.
So most people by now have heard of “Lyme disease,” a complicated infection if not caught early, caused by bacteria called Borrelia burgdorferi (Bb). We mostly see transmission of this bacteria through ticks, though other vectors carry Borrelia as well.
There are two schools of thought about tick borne infections.
1. Lyme is hard to get and easy to treat. We made treatment guidelines for everyone to follow.
-IDSA; the Infectious Diseases Society of America
2. Lyme is easy to get and hard to treat. We advocate for an individual approach to each patient.
-ILADS; the International Lyme & Associated Diseases Society
The IDSA feels confidant in its one-size-fits-all treatment guidelines. If tick borne infections are treated right away, a person can go on with their lives. It’s when the diseases have time to set up camp that they become serous problems.
Most often I see patients dealing with the chronic form (some now call them long haulers) because it took too many doctors and too much time to recognize what was going on. Months, sometimes years pass by as sick patients become dangerously ill looking for answers.
“Lyme” is a loaded word, no matter which side says it. That label is now hurting us because of the stigma it carries.
If a person doesn’t spend years searching from doctor-to-doctor, another scenario that happens often is a person is bitten by an infected tick* but their immune system handles it for a while. Years later that very sick patient will be hard-pressed to connect the dots from a tick bite to where they are.
*or mosquitos, or fleas, or mites, or… parasites have many vectors so please protect you, your family (especially young children) and your pets from ticks and insects!
Ask your vet for particulars like bug spray safe for animals or Seresto collars for dogs.
(If you use something like Brevacto for dogs, that only kills when the fleas or ticks bite, it doesn’t repel insects and arachnids, be sure to have back-up repellant spray.)
But here’s the MAIN problem with using the term Lyme – ticks can carry many infections in them! And Bb is just one type of Borrelia, there are hundreds of Borrelia strains out in the world. There are also:
As you can see, one bite from an infected tick doesn’t just mean Lyme disease, it can mean many different outcomes. So saying, “I have Lyme” just doesn’t cover it.
Patients turn to research and find the subject is riddled with politics, two schools of thought (wait, make that four schools of thought?) and many different treatment protocols all claiming to cure very sick patients.
I’m going to assume that because you’re here you know about those politics and the Lyme Wars, but if you do need to catch up please start with a great documentary called Under Our Skin and follow it up with a dear friend’s website: http://www.whatislyme.com/
When you have “Lyme” in your medical records that diagnosis carries around a stigma that changes how emergency rooms see you, doctors in many specialties, sometimes even family and friends. That stigma is more damaging than you can imagine.
So back to the insufficient label: many who use “Lyme” actually mean it as an umbrella term to encompass all the tick-borne infections they are dealing with.
Across the world what we call Lyme is called Borreliosis.
It became evident to me when Wormser (an IDSA doctor) called us “Lyme Loonies,” we would need to let the name go. Then in Emergence, Under Our Skin Part Two, those interviewed express the popular opinion that the name is part of the problem. Dr. Alan MacDonald says quite wisely something to this effect: ‘let the IDSA study Lyme all they want, we’ll be over here studying Borreliosis.’
One day on Facebook I just happened to use the term “BorreliaEtc” and I looked at it.
It just fit ~ perfectly!
It’s caught on a bit. Some have called it cute.
Others have said it’s a great name as it speaks to the global experience and to the fact that we are dealing with more than one infection.
So… That’s why Borrelia Etc. I believe it’s more accurate and inclusive.