NOTE: Our family's lyme story is FOREVER long. We could fill PAGES and PAGES with the details of our symptoms and treatments. However, we understand that no one has the time (nor the desire) to read that much info, so here's our attempt at a BRIEF overview of our experience with tick-borne diseases.

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OUR SYMPTOMS

For anyone who's hoping to compare notes, here's a list of our family's symptoms (in no particular order): heart abnormalities (supraventricular tachycardia, POTS, palpitations, etc.), shortness of breath (frequently described as "air hunger"), diffuse pain (both muscle pain and nerve pain, often debilitating), swollen joints, migraines, muscle twitches, facial and motor tics, rage, night sweats, flushing, chills, fevers, lightheadedness, fainting, numbness/tingling in arms and legs, profound fatigue, memory loss, inability to recall words/people/tasks/etc., cognitive dysfunction, anxiety, stuttering, OCD tendencies, blurry vision, pruritus (itching), low blood pressure, nausea, hemolytic anemia (caused by the destruction of red blood cells), petechiae, blood clots, and seizures.

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Whew! That was a mouthful! It's entirely possible that my less-than-stellar memory (Meredith speaking) has forgotten to list significant symptoms, but that's what I've got for now.

 

For those wanting more info about our family's experience with diagnosis and treatment, here's a brief rundown:

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MEREDITH'S LYME  DIAGNOSIS

Our family's journey with Lyme disease officially began in the fall of 2012. We say "officially began" because 2012 was the year of official diagnosis; the infection(s), however, had likely been present (at least in me, that is) for years beforehand.

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During August of 2012, while tending to my 3-year-old and 6-month-old boys, I experienced a cascading array of symptoms, including fainting, dizziness, pain, numbness, swollen joints, severe heart palpitations, seizures, etc. My primary care doctor, who's a wonderfully kind and persistent Dr.-House-type-of-fellow, tested me for a slew of possible illnesses. To everyone's surprise, the lyme tests (both ELISA and Western Blot) came back POSITIVE. The doctor was puzzled by the positive test results (as he was under the impression that Lyme disease did not exist in the southern states), so he conferred with an infectious disease specialist before proceeding with treatment. The infectious disease doc confirmed that, yes, I definitely had Lyme disease, and an oral course of doxycycline should cure the infection quickly and easily. (Ha! Those with tick-borne infections know the easy-to-cure mantra is NOT supported by ANY of the emerging scientific studies.) Unfortunately, like many other lyme patients, as soon as the oral course of doxycycline ended, I experienced a worsening of symptoms. I was NOT cured!

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BABESIA & BARTONELLA DIAGNOSIS

In a desperate search for ANSWERS, I flew all the way to New York to meet with a world-renowned Lyme specialist. He confirmed the Lyme diagnosis, as well as the presence of babesia duncani (WA1) and bartonella infections. (Plain ol' LabCorp was used for the laboratory testing and diagnosis. Easy peasy!) I attempted a course of IV Rocephin treatment, but I developed a blood clot within the first 24 hours. Oral antibiotics were then used in lieu of the IV Rocephin, and a DRAMATIC improvement was seen almost immediately. I experienced no adverse side effects from the antibiotics, and all was looking GREAT!

 

DOWNWARD SPIRAL

I was feeling SO GOOD, in fact, that I STOPPED the antibiotics (without consulting the doctor - eek!), and thus began a very long, downward spiral into dysfunction. I ended up in a wheelchair, bedridden, with seizures and severe heart complications. (Lesson for others? Do NOT stop any treatments without your doctor's approval! These bugs are the ultimate survivalists, and they'll resurface as soon as more favorable conditions exist; i.e., as soon as the antibiotics are stopped. Therefore, stopping and/or changing medications MUST be carefully managed by a Lyme-literate physician who can quickly address any reemergence of active infection(s) that might occur.) 

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Thankfully, the doctor in New York patiently administered a NEW course of oral antibiotics, and slowly (very, very slowly), I began to climb out of the darkness. Antibiotics were rotated and replaced as necessary, and the wheelchair was eventually set aside for a walker instead. Over the course of the following year, my condition improved (with a few setbacks here and there), and I was eventually able to resume most of my duties as a wife and stay-at-home mama of 2 young boys.

 

The following 5+ years have included MANY ups and downs, MANY different treatments (antibiotics, herbs, and a second - and successful! - course of IV Rocephin), many doctors, a cross-country move, and an overall focus on walking that very fine line of "remission" by carefully avoiding germs, stress, and other immune suppressors whenever possible.

 

As tick-borne testing has improved over the years (in terms of sensitivity and accuracy), more "bugs" have been found in my bloodstream (two different strains of borrelia, plus babesia duncanii, bartonella, and ehrlichia have all been detected through PCR testing, which is the gold standard in laboratory testing and diagnosis). Even still, I am doing far better today than in 2012, and I'm so grateful! (Details regarding my specific meds and treatments can be found here.)

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THE CHILDREN'S DIAGNOSIS

After learning more and more about Lyme disease, we began to wonder if the children might have Lyme disease too. After all, the scientific evidence clearly suggests that some tick-borne diseases can be passed from mother to child during pregnancy. Also, both boys DID have abnormal symptoms, including heart palpitations,  immune dysfunction, severe OCD tendencies, headaches, swollen knees, joint pain, and rage. (An episode of rage once occurred in the pediatrician's office, and - with her mouth agape - the pediatrician promptly referred our then 4-year-old to a psychiatrist for evaluation. UM??? Send a FOUR-YEAR-OLD to a psychiatrist? Nope. Thankfully, that still, small voice nudged us to look elsewhere for answers!)

 

Long story short, we had the boys tested for Lyme disease, and their tests came back POSITIVE. Also, they both tested positive for babesia duncanii (WA1), and bartonella was suspected as a co-infection in our oldest son based upon the doctor's clinical evaluation.

 

The boys were treated with a conservative course of oral antibiotics and herbs/tinctures, and they both improved dramatically! (The rage, the OCD stuff, the swollen joints, the breathing difficulties - everything vanished with treatment!) Do they have "flares" from time to time? Yep, they sure do. Especially after bouts of the flu or a stomach bug. And, sometimes, they'll have flares for no apparent reason whatsoever. (For one of our boys, the flares include severe facial and motor tics, headaches, fatigue, and heart palpitations. For our other son, the flares include swollen knees, headaches, back pain, neck pain, leg pain, dizziness, fatigue, severe anxiety, and full-blown rage.) BUT, everything considered, our boys are doing exceptionally well 75% of the time, and we are SO GRATEFUL for their improved health!

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As with my treatment, managing the boys' symptoms is an on-going effort. We've learned that we MUST be diligent in avoiding germs/stress/fatigue in order to keep their symptoms at bay, but that's a small price to pay for such incredible benefit!

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SO, WHICH TREATMENTS WORKED BEST FOR OUR FAMILY?

Well, that's tough to say. Our family - and our doctors - believe there is no magic bullet (at least not yet!). Instead, the constant addition and rotation of various antibiotics and herbs, along with various complementary detox therapies, has been "the answer." We know that's not what anyone wants to hear; those who are desperate for help want to hear our "this-is-what-worked-for-us" concrete solution. But that's just not something we can offer. Instead, we can share these few tidbits with those who need help/advice:

 

(1) A great doctor makes all the difference. Dr. Shawn Naylor (in Denver) is truly outstanding. He's a board-certified physician with a strong interest in natural medicine, so he's one of the few doctors who can offer both antibiotic therapy AND natural/herbal remedies. (And he will tell you that, for many patients, both therapies are necessary for healing.) He is passionate about treating tick-borne diseases, and he doesn't quit on the tough cases. He'll persist until his patients are back on their feet again.

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(2) Be willing to try antibiotics AND herbs/tinctures. They both work, and they work best when they're used in a complementary fashion.

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(3) Subscribe to the Lyme Times. This digital newsletter offers a treasure trove of information (including the latest studies regarding effective treatments) for those battling tick-borne disease.

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(4) Know that treating tick-borne disease is more like a marathon than a sprint. Be patient. You will have setbacks/flares occasionally (and "a flare" can equal 2 months in bed), and that's okay. Just don't quit. Eventually, there WILL be a cure (God willing!). In the meantime, try to minimize your exposure to other illnesses (the flu can easily cause a flare of lyme/babesia/bartonella symptoms), try to get plenty of rest on a regular basis (easier said than done, we know), try to avoid stress, and try to eat a healthy, nourishing diet. Walking that tightrope is worth the effort!

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(5) Invest in the treatments/equipment that make your life easier. We own a walker and a wheelchair, and they've both been wonderful blessings during the particularly rough stretches.  Also, massage therapy, epsom salt baths, and a stockpile of herbs/tinctures are staples in our home.

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(6) Speaking of investments, know that it isn't cheap to treat tick-borne diseases.  We have friends who've worked multiple jobs, sold their homes, sold blood plasma, and moved in with their in-laws to save money for medical tests/treatments. We don't say this to alarm anyone, but instead to arm folks with the nitty-gritty facts. We think it's helpful to be prepared for the expensive road ahead. (We've been blessed with incredibly generous parents who've shouldered much of the financial burden on our behalf; in this sense, lyme disease can impact many members of a family. If you have a village of family and friends who are offering to support you financially and/or emotionally, then please consider accepting their help with humble gratitude. This is a tough road to walk alone!)

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SIDENOTE: IS THERE A CONNECTION BETWEEN MS & LYME?

(Meredith speaking again:)

My recent brain scan revealed three small lesions in an area of the brain that's indicative of relapsing MS (multiple sclerosis). One neurologist officially diagnosed me with MS while another suggested that a follow-up scan be performed in a year before a definitive diagnosis is made. So, in my mind, the jury is still out on this one.

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We aren't sure what to make of the MS thing, especially since some lyme doctors believe that MS might actually be Lyme disease run amok. (Click here to watch a video about the connection between MS and lyme. If you're short on time, skip ahead to the 9- or 10-minute mark.)

 

Knowing that the standard immunosuppressive treatments for MS are TERRIBLE for lyme patients, we're choosing to focus on treating only the lyme and other tick-borne infections for the time being. If new research gives us reason to behave otherwise, then we'll alter our treatment plan accordingly. :-)

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Those who've been diagnosed with MS might consider researching the connection between MS and lyme disease. (When I have more time, I'll devote a blog post to this research. There are a startling number of peer-reviewed studies which suggest a possible link between these two diseases. Interesting stuff!)