Life… Or Something Like It

It’s been longer than I had planned on updating, my apologies, but right now we are integrateing our puppy more into our lives. The thing is, she’s still a puppy. We are still working on getting her obedience solid and with family she’s great!

However, she hasn’t been socialised enough with her trainer being busy at his day job. Now she’s 11 months old and I have a problem to correct that my trainer created by getting another puppy at the time when he should have been concentrating his “precious little extra time” (his words, not mine) on the service dog he agreed to help train.

She’s 70lbs of German Shepherd Dog who barks at a person coming close to her or dogs. Especially dogs. So I need a way to give -me- more confidence in our lives as they combine, and I’ve founda wonderful course by a service dog trainer that is helping with exactly that!

One of the main issues in this house is our two cats don’t want anything to do with her. They just aren’t having it with Saathee’s energy level and her heightened herding instincts.

I get it. We are teaching the puppy, finally correctly, not to rush up to the puppy gate. We are getting her obedience to a level that we can give commands from a distance. But the cats don’t know that.

(Though Joni loooooves to watch Saathee’s training sessions. Lol)

They’ve just seen all the times the 70lbs monster has made her way through the cat door and we didn’t prevent it.

I get it.

So this course gives me a concept from day one of week one that was greatly lacking – eye contact. Now I find her looking up at me a lot, to check in, tosee where I’m looking…

We worked on eye contact, then eye contact in motion on a leash… then the lessons start to build in obedience each week from there. It’s not a beginner’s course, one needs the basics down. It is just what I needed, and pup is certainly enjoying learning new things.

It’s been $@#ยฃ’n awesome to see the results over the last three weeks. Of course being consistent with training when you’re ill is hard enough, but I’ve had (1) muscles in my back thrown out (and pinching my sciatic nerve in the first week) AND I had (2) a Sphenocath done 27 Oct.

What is a Sphenocath? you ask?

It’s putting a medicine into a sinus pocket that has a nerve bundle with a direct and short link to the brain. Said medicine blocks pain receptors in this powerful nerve bundle. The primary use is to relieve chronic migraines, but we are hoping with me maybe it will help with abdominal migraines? Maybe. And maybe it’ll help with general pain? Maybe. We’ll see. So far my head pressure has lightened!

How do they do this procedure? you ask? It’s a small syringe (no needle) up the nose (you are given lidocaine to freeze the nose, I didn’t feel anything until the actual medicine poured into the pocket, no pain felt at all) while you lay on your back on an exam table, head tilted back a little.

If my back hadn’t hurt so bad, it wouldn’t be such a bad memory… but that procedure was hard. Grade 10 hard. It made my internal temperature raise 4ยฐ in just moments!! (my doctor was learning this procedure, so I got to volunteer to have her train on me) and I had N/V come on so fast once the sweat started and my body felt cold and wet, yet hot… arg.

I had to hold my head straight enough that I didn’t move the medicine, but over enough so I didn’t choke on my own vomit.

I also was so weak I couldn’t move any limbs, couldn’t talk for about a minute.

My doctor says, “you’re always my one patient!”

Really not a nice memory. I came out thinking I’d never, EVER, do that again.

But.

Days later, after the bad taste of lidocaine plus the medicine dissipated…

I am seeing less head pressure now than I have in years. That alone is huge, but that’s not all. And though at this moment, as I write, the brain fog is strong… I can still recognize the fog, not just feel “this is my brain’s existence.” I can observe myself with a lot more clarity.

That is incredible and I’m already feeling like I might repeat the process if the good results continue. I haven’t had a migraine since before the procedure, another plus. You’d think, wait… waitwaitwait… you’d do that again?!

The thing is…

10 minutes of hell and a day to recover that I can plan for

vs

these exact symptoms (and more) coming randomly WITH the migraine headache that I cannot plan for…

Yeah. It’s a wait and see game, kinda like with the cats and dog. Lol

Avril Lavigne – Head Above Water (Official Video)

Head Above Water

Please… watch this video. Avril Lavigne had to take a 5 year break from performing because she fights BorreliaEtc. It’s powerful, it speaks directly to what so many of us go through… it’s hauntingly beautiful.

I still can’t stop the tears from falling, and I’ve heard this so much I know every word by heart. It’s incredible. Moving to the core.

I’m sorry it’s been too long since I’ve updated. We had Saathee Shadow for over a week, but Matt went to New York for a week so she’s back with her trainer during that time. We will go get her when Matt comes home because now she has to spend more time with me and with us. A lot of her behavior is gorgeous, but there are issues to get to before she gets too old. (She’s 10 months old.)

I can get her to return to me when there’s a cat, a bunny… her basic obedience is excellent.

But she barks. Part of that is her confidence in being with me. So far her life has mostly been with her trainer, an able-bodied person who can give her a lot more than me as far as energy. Only about once a month would she come home for a visit and in the beginning it was 2, 3 days… the last visit was 10 days. Now it will be stretching into being home for weeks.

I’ve signed up for my own training course with a service dog trainer to help with my confidence, an 8 week course. So when I pick her up we will be doing one specific exercise a week.

I’m looking forward to it. ๐Ÿ™‚

But I’m also looking forward to the week of quiet.

Adding a New Diagnosis

Over the past two decades I’ve collected an impressive list of diagnoses along with the tick-borne ones – I’ll give you a taste from my first diagnosis and then in no particular order:

  • heartburn (that was the first guess when I couldn’t stop throwing up at 18 years old)
  • gastroparesis
  • epstein-barr virus (EBV)
  • postural orthostatic tachycardia syndrome (POTS)
  • multiple sclerosis (MS)
  • early menopause (age 22)
  • hypothyroidism
  • dysautonomia
  • human herpes virus 6 (HHV-6)
  • chronic fatigue (CFS/ME)
  • abdominal migraines
  • bell’s palsy
  • temporary idiopathic paralysis of the left leg
  • slowed nerve conduction
  • cluster headaches
  • vaso vagel syncope (VVS)
  • ankle and leg tendonitis
  • chronic pain syndrome

 

…and like the list of links in Meet The Family, that’s simply off the top of my head.

Well yay (?) at my latest Primary Care appt I got to add another diagnosis.

*facepalm*

  • polycystic ovary syndrome (PCOS)

Now this sounds a lot more scary than it is. Let’s see what a little Google search says.

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Thanks. I’m becoming more like a man every day. A frustrated-because-my-hormones-aren’t-where-they-should-be person. But without the energy to throw a proper tantrum, I’ll resort to blogging about how surreal it feels. Another diagnosis. I should get to have a punch card.

This diagnosis is validating because I have WEIRD symptoms – like hair on my tummy that wasn’t there five years ago. Seriously. And hobbit feet, but I’ve had those all my life and I’m part of the extended Baggins Family.

Ahem, where was I?

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I do have a “high normal” amount of testosterone according to my July blood draw. At my age range it becomes high at the numerical value of 146.

I’m 145.

My estrogens are “normal low” but progesterone is low. Thankfully I don’t have acne, but don’t count that out yet, I’m only turning 38 in December, remember? (I’m trying not to feel old, but I have reached that point where EVERYONE on tv is suddenly younger than me! When did this happen??)

Now the part about cysts are scary, and enlarged ovaries, and connection to endometriosis… C’mon Universe, really?

Nevermind, I didn’t ask that. Really, it’s okay. Go back to sleep Universe. Nighty night!

So… treatments?

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Birth control? Nope, have had blood clots in my lungs. (Oh yeah, I forgot that diagnosis before… certain ones you want to forget.) So all the hormone stuff is a no-go. I should make an appointment with my GYN, thankfully I have a really great one that I can tell anything to. She was one of the first people I came out to outside of the LGBTQ community. She’ll help me make sense out this, “don’t worry, you’re becoming a man” thing.

Right?

And also I’m not doing statins or anything because my BP is already low and I’m having trouble with this dancing pulse. When I was diagnosed with POTS my average pulse was 110. BP is average 90/60. Now my pulse is sinking to the 40’s, sometimes even the 30’s! Other times it shoots up to 156. I’ve been to the cardiologist, my heart is strong and there is no evidence of anything but VVS. But we are not messing with my pressure.

And I don’t have diabetes, my blood sugar is usually good when I keep up the IVs. I’ve been so tired lately that starting my IV fluids seems like such a daunting task… like climbing a mountain would be easier.

This is your mind.

This is your mind on BorreliaEtc.

No questions, too tired.

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Recycling for BorreliaEtc

Anyone who faces chronic illness knows how medical containers pile up. Supplement bottles, vitamin bottles, protein powders, electrolyte additives, tincture bottles, glass bottles, plastic bottles, etc, etc… and I do mean pile.

(Remember those boxes Jordan Fisher Smith empties in Under Our Skin?)

Well, someone finally got ticked off enough to do something about it.

(Like my pun & plug?)

I was so excited to hear about this program – one USD going to BorreliaEtc patients in need for every pound of recycled goods. I signed up and then inquired about collecting at the picnic – I was so happy when they replied with equal enthusiasm!

But empty bottles isn’t where this program ends. The Ticked Off Foundation (TOF) sent me these Recycle For Lyme (RFL) images to use so it becomes super easy to explain the program. (Special thanks to Stephanie. โค)

So now beyond supplement bottles, there is also nutritional package recycling. All brands are accepted!

Oral care, toothpaste, toothbrushes, deodorant, mouthwash, soap packaging, floss containers, and more…

…and lastly…

Make up, lotions, hair care… there is a nice big list in this category.

My family will be collecting all of these containers at the picnic (September 15th at the Pt. Defiance Park Gig Harbor Viewpoint in Tacoma, WA, starts at 2p) so please bring any of the mentioned items to the picnic, and please think about signing up with RFL yourselves, no matter where you are – you can help!

If you have any questions please check out the FAQ page on the RFL site, or leave a comment and I’ll help as best as I can!

Thank you so much for helping.
๐Ÿ’š

 

Annual Picnic

It’s incredible how quickly a year can pass. It seems like just yesterday we were preparing for the 15th Annual Potluck in 2017… but here we are 11 months later…


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Harts Of Lyme is happy to be sponsoring WA’s 16th Annual Potluck Picnic for those who live with BorreliaEtc and their families/caregivers! We’ve booked Pt. Defiance Park, the Gig Harbor View Point Picnic Area (along 5 Mile Drive) for the 3rd Saturday of September.

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Topics we are hoping to talk about:

Pranayama Yoga and Meditation
Medical Cannabis
Qigong Healing

But as normal (last year was very special) all we truly “plan” for is for an afternoon of relaxation, conversation, support and sharing with wonderful people and equally wonderful food.

There is no cost to attend, if you wish to donate towards next year’s picnic there will be a donation box but it is entirely voluntary.

Important details:

Who: patients with chronic, complex illnesses and those who support them (family, friends, medical professionals, other interested community supporters and even well-behaved four-legged friends).

What: The 16th Annual WA Lyme Picnic (a potluck) sponsored by Harts of Lyme (patient Anna and her parents Lorraine and Matt). This is a special event for the Community at large to gather one more time before winter settles in, it’s a low-key social gathering.

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Please RSVP to either [Facebook] event page. You are welcome to send a private Facebook message or email Anna at borreliaetc@gmail.com

If you have any questions, please ask away!

When: Saturday, September 15, 2018 from 2 p.m. til we go home

Where: Point Defiance Park, Tacoma, Washington, Gig Harbor Viewpoint picnic area/shelter.

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Follow Five Mile Dive from the park entrance to the event area at the tip of the peninsula. We will put up green balloons to help lead you.

To learn more about this picnic area and view a map, follow this link:

http://www.metroparkstacoma.org/point-defiance-gig-harbor-picnic/

There will be a parking lot and handicap-accessible restrooms just a few steps from the picnic shelter.

Why:ย  Our mission and vision of this event is to share a relaxing afternoon and evening where we can reflect, share, have conversations and visit with old friends and welcome new ones in a beautiful and tranquil setting.

What to Bring:

Yourself and those who support you!

This picnic is a potluck so we ask that you to bring food to share with others.

***Due to the dietary restrictions for many, please note the following guidelines: please bring a written ingredient list and specify whether your food is organic or nonorganic; this information should accompany your potluck contribution on the table.

Please try to avoid the following ingredients:

  • gluten
  • dairy
  • alcohol
  • sugar

We look forward to your delightful dishes! Many thanks in advance. Some may want to ask for recipes (it’s happened before, we are talking of a very imaginative community!) so you may want to bring a notebook.

Please bring your own beverages (important note: alcoholic beverages are not allowed in parks). The Harts will bring water and there is a sink at the pavilion.

The shelter is reserved with minimal seating and tables. Please bring your own chairs or blankets to make yourselves comfortable.


Oh, are you drowning in bottles of OTC meds you don’t need anymore?

And what if I told you that shampoo bottle and toothpaste tube you just finished could help patients with BorreliaEtc?


The Give Away Table

Bring your extra OTC supplements and vitamins! Bring books you’d like to pass along! Business cards to share!

Please bring anything to the park for others, we will happily set up a Give Away table. With supplements et al please check expiration dates. (Remember, “sell by” dates are very different than the product expiring. I’ve had many doctors tell me that pills last years beyond expiration dates, though they do lose some efficacy. Capsules are the same, though they don’t last as long as pills. Remember, check the dates and only take what you feel comfortable with.)

Thank you in advance for helping and supporting others!

Plus Anna is signed up with the Recycle For Lyme program (as are others!) so we can recycle supplement bottles that are done, tincture bottles, sports drink packages, shampoo bottles and other materials!

Even prescription bottles (but hang on, more on that in a moment)

More information can be found onย their website.

***Prescription bottles go to a different place than Recycle For Lyme. A church is accepting used Rx bottles to pass along to those in need.

Thank you to the TOF for this great recycling program!


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Please DONโ€™T bring:

Picnic supplies, such as plates, napkins and utensils. Weโ€™ll supply all of those.

To maintain a comfortable and safe environment for all, this is a fragrance-free event. This means please refrain from wearing any perfumes, scented body-products and scented clothing (from laundry detergent to soaps and shampoos). No smoking or vaping of any kind will be allowed at this event.

You are more than welcome to take photos (please ask people you don’t know their preference) but we ask that you do not record near the pavilion nor the circle. If you want to do a Facebook Live, there are beautiful trails to walk to just feet away from the shelter, or there is the beautiful backdrop of the Salish Sea about 200 yards away, across Five Mile Drive, where privacy can be respected.

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To keep a low-key and relaxing environment for guests, loud music and noisy games, sports equipment or the like will not be allowed.

While children and dogs are welcome to the event, please keep in mind that we want to keep the environment as tranquil as possible for our patients.

The weather in the Puget Sound region of Washington State is lovely in September.ย  Weโ€™ll post weather updates as we get closer to the event so that you can be prepared.

We are looking forward to seeing you all!!

Anna
๐Ÿ’š๐Ÿ’š๐Ÿ’š๐Ÿ’š๐Ÿ’š

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. โ€” Izaak Walton

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