Caregivers Corner

Eventually I plan this page to grow in a couple different ways – there are certain things my family have learned in dealing with me during daily life let alone during flare ups, this is an area they can write their observations, tips for others they’ve learned… Or share their personal journeys.

Plus we can show specific exercises we do in Qigong, we can explain the acupressure points we’ve learned about… And this is all stuff we learned on the way. I wish we knew half of what we know… hindsight and all.

Coming Soon!

 

https://borreliaetc.com/caregivers-corner/

 

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What’s In A Name?

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 members with articles that bear huge ticks on the cover.

“Lyme” is a loaded word with purpose, no matter which side says it. The IDSA or ILADS. Patients or physicians that follow the CDC’s guidelines to the letter as if they were mandatory and not just guidelines. That word is now hurting us – the patients with tick-borne infections, the doctors who are helping patients and the scientists who are furthering research.

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 is Late-Stage or Tertiary Lyme, what is commonly called Chronic Lyme or Post-Lyme disease Syndrome (the latter more used by uneducated doctors *le sigh*) …most often I see patients dealing with the late-stage 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 more ill looking for answers.

I was “lucky” – I became sick quickly and I had two bull’s eye rashes to recall. Many patients don’t see a rash if they have it (the back, butt, armpits and hair are places you should have someone you can trust help you look) and others don’t have strong enough immune systems to produce a rash. Some doctors and scientists are exploring whether a rash is a sign of reinfection rather than initial infection.

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; I use a Seresto collar on my dog and all natural bug/tick spray from http://www.ticks-n-all.com on all two-legged pack members. However, 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.

Kids who are always outside playing and exploring are at a huge risk every day and, of course, I was one of those kids growing up on Long Island. Some kids grow up with it (*raises hand*) and have moderate (or severe) difficulties, but at reinfection or when stress finally weakens the immune system all hell breaks loose.

By then your doctor certainly doesn’t know what to do with you.

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:

  • Bartonella
  • Babesia
  • Rickettsia
  • Rocky Mountain Spotted Fever
  • Ehrlichia
  • Mycoplasma
  • Tick paralysis
  • Anaplasma
  • Q-fever
  • And more…

As you can see, one tick bite doesn’t just mean Lyme disease, it can mean many different outcomes. So saying, “I have Lyme” just doesn’t cover it.

So patients turn to research and find the subject is riddled with politics, two schools of thought (wait, make that four schools of thought? well, two major schools of thought, anyway), 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 read up please start 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. http://www.endlymestigma.com/

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 called us “Lyme Loonies” that 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 BorreliaEtc. I believe it’s more accurate and inclusive.

The Journey Begins

Hi! Welcome to BorreliaEtc, a site about a family’s journey through tick-borne infections while living in Washington State.

Thanks for joining us! You’ll mostly hear from me, Anna Willo Hart, the “BorreliaEtc” patient of this house.

I will turn 38 at the end of the year, but all I’ve known my entire adult life is battling chronic illness. Throughout my childhood (I was born on Long Island in New York State two days before John Lennon was shot) I always had unexplained low immunity.

Oh if I only knew then what I know now… but as my English Nan used to say, if wishes were horses beggars would ride.

We moved out West to WA State in the summer of 1996. In June of 1998, when I was 17 years old, I had finished a year of college along with my last year of high school ~ so I thought I had earned some time for travel, to learn from the School of Hard Knocks, and travel I did: through the Midwest USA, through Ontario, Canada, a train ride through upstate New York and buses to get back to my childhood home of Long Island.

During my time in the Midwest, I was invited on a camping and canoeing trip with Lakota Elders and had the time of my life. My spirituality strengthened, my resolve about helping our planet strengthened (we were canoeing the Wabash River, then the 9th most polluted river in the USA, and tried to educate the local towns we stopped in about taking care of Our Earth), but unfortunately I still had a weak immune system. When I came off the river (my back had started to hurt suddenly, I thought it was the constant canoeing and camping on the ground but danget I was 17! I should have sailed through that, no pun intended) I was on the porch of our host in Indiana and I noticed my legs felt weird when I crossed them.

So I went inside, hiked my skirt up and saw two large bull’s eye rashes growing on my left leg. At the time I asked the locals and this is what I was told:

“Everything ’round here bites and gives rashes, don’t worry about it!”

So I didn’t. Even though I should have recognized that damn rash from health class back in New York! Yet out here in WA, it seemed no one knew about tick-borne infections.

I had the classic presentation of Lyme disease starting with a rash (well, two), developing what seemed like a cold, started to get aches and pains that a teenager should not have… and then the first clue started that something was seriously wrong: constant, daily nausea for 8 months during 1999 and for 6 of those months I woke up every morning at just past 7a having to run down to the bathroom to throw up. Every morning for 6 months straight. It got to the point where I couldn’t keep water down!

I went to over 50 doctors up and down Puget Sound – from general practitioners, to naturopaths, to specialists (neurologists, endocrinologists, ear nose throat, gastroenterologists, and many others) until I ended up in the University of WA’s Medical Center. But even when I had put together the rashes, the wide range of symptoms I was having, the doctors didn’t listen. They just kept saying, “We can’t find anything wrong with your stomach.”

There is woefully little public education on tick-borne infections on the West Coast, and the reason behind that is because doctors and scientists are involved in what we have dubbed the “Lyme Wars” – two schools of thought as to what dangers tick bites can pose.

At 23 years old I moved back in with my parents, Lorraine and Matthew. I was going through a divorce (marital rape, but that’s a story for another time) and could not live by myself. My health problems had multiplied, including scary symptoms like seizures, paralysis, and other neurological troubles among other systemic problems (I have a symptom list three pages long). Thankfully my mother became my official caregiver – but my family was tossed down the rabbit hole of activism for Lyme and tick infections. We enjoy what we do, but no one would choose this life.

So stay tuned, this is just a little introduction, all created from my bed.

Nice to meet you!

Anna

Good company in a journey makes the way seem shorter. — Izaak Walton

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