11 Lyme Facts I Wish I’d Known Sooner…

When I was a kid, I never quite fit in at school, but the outdoors were my refuge—every day, I came home and found peace and quiet in our woods.  Little did I know, nature was about to stab me in the back worse than anything the other kids might’ve said.

Growing up, tick bites were an inevitable part of spending time outside—unavoidable but only a nuisance.  I was bitten so many times that I can’t possibly remember them all.

Sure, my family had heard about tick-borne illnesses like Lyme disease and Rocky Mountain Spotted Fever, but all of us were healthy and had always been told that Lyme didn’t exist in our area.  Besides, there were blood tests and antibiotics, so we assumed there was nothing to worry about.

But in the fall when I started middle school, my parents and my coaches were alarmed that I suddenly became too exhausted to do a lap around the field.  My knees and hips ached as if I’d aged sixty years.  Dark circles dripped from my glassy eyes.  Strangers commented on how ill I looked and asked if I was okay.    

I went to the doctor, and he tested me for Lyme, mono, and leukemia.  Everything was negative.

“It’s just some virus,” he said.  “You’ll be fine.”  And the doctor sent me on my way with no answer, no advice, and no help.

Twelve years later, I’m still not fine. 

I spent the rest of my childhood and teens fighting miscellaneous physical problems that doctors gave up on understanding.  At eleven, when I first got sick, I couldn’t go to school anymore because my energy was so limited, and I inexplicably developed learning disabilities.

Doctors told me time and time again that my ailments were because I was “just depressed” from homeschooling and too much isolation—no one believed my depression was a result of physical illness.

And worst of all, a few months after the mystery sickness began, I got PANS—an infection-triggered autoimmune condition that attacks the brain.  This left me with severe OCD, wild mood swings, anxiety, ADHD, and more, but I didn’t get diagnosed or treated until I was nineteen.

Yet perhaps most disturbing of all is that it took another two years after discovering I had PANS to get diagnosed with Lyme disease—a decade after that first “mystery illness.”  If we knew PANS was caused by infections, and I’d grown up playing in the woods, why didn’t any doctor more thoroughly investigate Lyme as a trigger?

In 2016, just months after I’d seemingly beaten my PANS symptoms into remission, I had a tick bite during spring break, developed a flu-like illness a couple of weeks later, got heart problems, and descended into a severe PANS relapse.  I tested positive for Lyme, Babesia, and Tick-Borne Relapsing Fever.  Nine months after the bite, I started treatment.

Treatment can be up to thirty pills per day!

May is Lyme Disease Awareness Month…

As one of the largest PANS/PANDAS blogs, I’d do a huge disservice to not encourage all of you to learn more about Lyme disease.  Not everyone with PANS/PANDAS has tick-borne infections, but our community is disproportionately affected, and some of you might not know this.

You can throw all the penicillin in the world at a case of PANDAS, but if that person also has Lyme, they won’t fully recover.

Lyme is the “Great Imitator” because it’s a systemic infection which has over 300 possible symptoms.   Many chronic conditions, including PANS/PANDAS, can be caused or exacerbated by Lyme.  Therefore, I’d like to share a few facts that I wish someone had told me twelve years ago in the hopes of saving someone else years of suffering:

1) The CDC Lyme tests your doctor gives you miss at least 35-50% of cases. 

You can use Igenex Labs for more accurate results, however…

2) Lyme disease is a clinical diagnosis.

Diagnosis isn’t based on tests results alone—it takes into account your history, symptoms, and possible tick exposure.

3) You don’t have to remember getting a tick bite to have Lyme.

Many ticks are so tiny that it’s easy to miss them. Lyme can also be passed from mother to baby, and there’s evidence it can be transmitted sexually, too.  Some studies have found that mosquitos and fleas also carry Lyme.

4) You don’t have to get a rash to have Lyme.

The characteristic bull’s-eye rash shows up less than 50% of the time.  It can also be in less-visible areas of skin, or it may not look like a bull’s eye at all.

5) Lyme is in all fifty states and every continent except Antarctica.

6) Thirty days of doxycycline isn’t a cure for everyone. 

If you catch Lyme quickly, some people get better with this treatment.  However, at least 40% relapse because the Lyme bacteria are excellent at hiding from your immune system and changing form to avoid being killed by antibiotics.  No study has ever proven a month of doxycycline cures chronic infection.

7) The published studies supposedly refuting “Chronic Lyme” are deceiving. 

Scientists claim that longer courses of doxycycline don’t improve symptoms—and they’re probably right.  However, no Lyme specialist that I’ve heard of treats persistent Lyme with only a single antibiotic for months on end like some of those studies.  (And don’t get me started on the conflicts of interest hindering better Lyme research.)

Most Lyme doctors’ clinical experience has led them to treat with herbs and supplements to strengthen the immune system, as well as combinations of antibiotics—often pulsed so that there are weeks both on and off antibiotics to discourage the bacteria from becoming resistant.  The best doctors also realize that every case is unique, so each patient’s treatment plan is unique, too.

8) It’s rarely just Lyme.

Most people with Lyme have other tick borne-infections like Babesia, Bartonella, Ehrlichea, anaplasma, and others because ticks often carry multiple infections.  If you’re diagnosed with Lyme and don’t also treat the co-infections, you won’t get better.

(This is another flaw of some studies—they don’t account for the possibility that their Lyme patients had other tick-borne infections.  Babesia, for example, is a protozoa that can’t be killed by Lyme antibiotics.)

10) Prevention is the best medicine.

I got bitten in 2016 while wearing so-called “Deep Woods Tick-Repellant.”  I walked through tall grass in boots and long pants (which I had sprayed thoroughly) and checked for ticks that night, and I thought all was well.  Apparently you can’t count on tick spray alone to protect you…

  • Wear clothes infused with permethrin when spending time outside.
  • Consider a repellant with DEET, and be sure to spray your shoes.
  • Put all your clothes in a hot dryer for at least thirty minutes after you come inside, because ticks can survive the washing machine.
  • Check your whole body and take a hot shower as soon as you can.
  • Check your pets for ticks, because they can carry them into the house.  Keep in mind that products like Frontline only kill ticks that have attached, and even then, it takes a few hours to work. 
  • Don’t let your dogs sit on furniture or get in bed with you. (I know, I know—I love dogs, too, but I’m now contented to snuggle with them on the floor… After checking for ticks!)

This site here has a lot of great prevention tips.

11) You can get better.

Many doctors believe you’ll never eliminate the infection, but you can get better and go into remission with appropriate treatment.  It might be a very, very long road, but it is possible.  I feel like I’m getting more and more glimpses of hope myself as time goes on.

Despite my difficult journey, my life is not a tragedy. 

It may have taken a decade to get a diagnosis, but thanks to treatment (both for PANS and Lyme), in 2017, I graduated college Summa Cum Laude.  I’m still healing, but if my recovery continues, I’ll go on to graduate school this fall with a competitive scholarship.

I’m so much more than my illnesses, but fighting Lyme and PANS has made me who I am, helped me find my passion, introduced me to wonderful people, and given me a gratitude for being alive that I wouldn’t have otherwise.

I want to use my story to raise awareness.  I want to help others get the care they need so they can recover and move on with their lives, too.  Will you join me?


Lyme Resources:

 

Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators

This week, legislators in Wisconsin have the opportunity to save hundreds of lives and millions of taxpayer dollars: a bill to establish an advisory educational council on PANS/PANDAS is under review.  New York is also considering similar policies, and several others including Virginia have successfully implemented them.

Continue reading “Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators”

I Graduated College with PANS, Lyme, and…. Highest Honors!

This weekend, I’ve defied all odds; I’ve done what never should’ve been possible…

I graduated from college, Summa Cum Laude… While in a long-standing battle with PANS and Lyme Disease!

When I was first diagnosed, it felt like my life was a tragedy, and PANS was the ending.  I was sure that it had completely ruined me, and pursuing my dreams seemed inconceivable…

Continue reading “I Graduated College with PANS, Lyme, and…. Highest Honors!”

Why I Almost Quit Lyme Treatment

I pretty much take an entire pharmacy every day

 

On Thursday morning, I woke up and immediately knew something was very wrong. My whole body ached. I had an awful headache. I was dizzy. I was too nauseous to even think about food or water. It was that familiar set of symptoms that meant one thing: I was in for a terrible Lyme herx.

Continue reading “Why I Almost Quit Lyme Treatment”

Lyme Disease: A Still, Silent Battle

2 antibiotics, 3 medications, and 6 supplements: my weapons of choice against Lyme disease
2 antibiotics, 3 other meds, and 8 supplements: my weapons of choice against Lyme

“It’s Lyme disease.”

They were three words that shattered all of my expectations for recovery from PANS… Three words that I still struggle to accept… Three words that are going to change my life…

Continue reading “Lyme Disease: A Still, Silent Battle”

IVIG #3: Third Time’s a Charm

Could IVIG #3 be the end of PANS for me?
Could IVIG #3 be the end of PANS for me?

Today, just two weeks after my third IVIG, I’m happy to say I’ve made tremendous progress. I’m no longer afraid of food and calories, so I’ve probably gained back about half of the weight I lost. I’ve gotten strong enough to run (slowly). My POTS symptoms are basically gone, and my parents have told me that there’s life in my eyes again. Oh, and I’ve even finished all of the summer coursework for the classes I had to take incompletes in—including a twelve-page research paper!

So am I better now? Is life perfectly peachy now that I’ve had IVIG? Continue reading “IVIG #3: Third Time’s a Charm”

POTS & PANS: A Recipe for Disaster?

My body is cooking up trouble with POTS and PANS
My body is cooking up trouble with POTS and PANS

“You’re going to hate me when I tell you this,” my cardiologist said this week.

I braced myself to be told my heart was damaged from Rheumatic Fever—or to be told my symptoms were all in my head, as so many doctors had said over the years…

Continue reading “POTS & PANS: A Recipe for Disaster?”

Why Antibiotics Are Necessary for PANS

Sometimes, you have to try a few antibiotics for PANS before you find the right one.
Sometimes, you have to try a few antibiotics for PANS before you find the right one.

Since being diagnosed with PANS, I’ve been on antibiotics for twenty months straight, save for one two-week break. I’ll continue until six months after my last symptom, or at the very least, through my senior year of college.

Continue reading “Why Antibiotics Are Necessary for PANS”