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:

 

The Part of PANS/Encephalitis Recovery We Don’t Talk About

For the last eleven years of being sick, time has been my enemy. 

The first sign I was ill was that I started moving in slow-motion—I lost awareness of time passing.  Doctors thought it was late-onset Attention-Deficit Disorder. Instead, as I’d find out eight years later, my immune system was attacking my brain.

Continue reading “The Part of PANS/Encephalitis Recovery We Don’t Talk About”

10 Ways to Feel Less Hopeless When Chronically Ill

“I just can’t keep going.”

“I feel completely hopeless.” 

“How can anyone live like this?”

These messages come to my inbox nearly every week from kids and teenagers who think PANS or Lyme is the end of the life they once loved; from adults who’ve been fighting for years, unsure how much longer they can go through the cycle of relapse, treatment, and recovery; and even from parents who are tired of being too strong for too long.

My conditions themselves, PANS/PANDAS and Lyme, affect brain chemistry in a way that creates an all-consuming despair too dark for words.

And if the hopelessness weren’t bad enough as a symptom… Doctors give up on you. Family members don’t believe you. Friends stop talking to you. Even the experts aren’t completely sure how to help.

Moving through life with a chronic illness isn’t easy, but I’ve developed strategies that I hope can help any of you feeling hopeless right now…

NOTE: If you’re feeling suicidal, please call your doctor, as this can be a sign of brain inflammation in PANS or Lyme. If you’re in crisis, call the National Suicide Prevention Lifeline at 1-800-273-8255.

1) I keep living as much as I can.

Keeping my life as consistent as possible always helps when my disease uproots my mind in a flare. That’s why I stayed in school even when I was horribly ill—even if all I could do was show up to class without understanding a single word. If my illness was going to make me miserable no matter what, I figured I might as well be miserable but working towards my dreams.

However, it’s a fine line between pushing yourself to do too much and trying to maintain a sense of normalcy. The line is different for everyone.

2) I focus on what I can do—not on what I can’t.

My diseases can be incapacitating. Even in my better times, I have to do things slower or in a different way than everyone else. Nevertheless, instead of focusing on my disadvantages, I focus on everything I’ve done despite my difficulties.

I can’t have a job or live on my own right now, but I think I run a pretty cool blog. 🙂 And hey, I did graduate from college in December, so that counts for something…

You’re up against serious challenges if you have a chronic illness. Try not to beat yourself up for what you can’t accomplish at the moment—getting better and walking this journey is some of the hardest work anyone could do.

3) I think about how fortunate I am.

I know I’m lucky to have had real treatment….

As difficult as life can be, I try to remember that so many people with my conditions never get a diagnosis—let alone proper treatment. When I start feeling sorry for myself, I think about how much worse I would’ve been without any treatment.

Therefore, I try to view my life as a second chance that so many others with my condition don’t get. And I think about making the most of it…

4) I give back.

I never intended to be writing this blog after four years, but I’ve continued because it gives me a sense of purpose when people say I’ve helped them. By giving back to others, I find meaning in my life even when I’m otherwise miserable.

You don’t have to start a blog about your illness, but you can feel better by finding even a small way to make someone else’s day just a little better. You can send your grandma a card. You can pick up a piece of litter in the park. You can text a meme to another friend who’s having a bad day. Shoot, you’ll feel better if you pet your cat and hear her purr with contentment.

5) I distract myself.

Laughter is the best distraction of all, but do anything safe that will take your mind off the hopelessness. There are less options when you have severe cognitive problems and severe physical symptoms that leave you housebound, but there’s always something…

If I can’t read a book or watch a movie or talk to a friend, to be honest, I usually spend all day on Twitter accounts and mindless iPhone games. (Ironically, my favorite iPhone game for these circumstances is called Panda Pop.) It’s easy to get lost in these activities, and when my symptoms are at their worst, the best thing is to make the hours go by faster.

6) I get out of the house.

[Please protect yourself from ticks if you go in these woods!]
Some people with PANS are terrified of leaving their home, but when I’m able, I feel better if I take a walk around the neighborhood. Sometimes I start associating being indoors with my hopeless thinking, so going on a walk or just sitting on the porch forces me to think of something else. Unless you have allergies, I believe the fresh air does anyone some good.

7) I spend time with others.

I feel less hopeless when I’m with a friend—especially if they can make me laugh. Humor is so important! Last semester, I told a few good friends about my relapse, and they’d sit with me through flares or encourage me to at least have lunch in the student union instead of alone at home. You’d be surprised how kind some people can be if you let them into your life just a little bit.

8) I find an outlet.

When possible, I redirect my energy to a hobby. Until I got too sick a few months ago, running was my go-to. I ran three times a week, and the races I trained for were often the only thing I looked forward to. It gave me another reason to not give up.

But for you, your outlet could be art. Or maybe baking makes you feel better. Maybe it’s playing an instrument. Maybe you love to code. Maybe writing is enjoyable. Or perhaps you get really excited about Bingo. It doesn’t really matter what the activity is, but it’s helpful to have something simple that lifts your spirits.

9) I try to think rationally.

Unfortunately, PANS and Lyme are notorious for crippling one’s ability to think clearly. However, I learned to accept that this was so and to look at unusual thoughts with suspicion. For example, I now know I get suicidal thoughts when my brain is inflamed, and I know they’re just a sign that I need more antibiotics or steroids—the thoughts aren’t based in reality.

When I start going down that rabbit hole of extreme despair, I’m now able to step back and realize it’s just a feeling—life isn’t as hopeless and pointless as my brain tells me it is. Like the saying goes: “Don’t believe everything you think.”

I credit this skill to Cognitive Behavioral Therapy, which I highly suggest to anyone willing to try it. And again, please reach out for help if you’re feeling suicidal or thinking of hurting yourself. There’s always hope.

10) I think about how far science is progressing.

We’re only at the very beginning of understanding many chronic diseases. Although it’s frustrating for those of us suffering right now, I find hope knowing how much research is happening. I truly believe that in my lifetime, PANS/autoimmune encephalitis and Lyme will become mainstream conditions that doctors know how to fix. To me, it’s only a matter of time until we all get better.

We just have to hang on until then.

——————————

So to all of you readers wondering how you’ll get through another day, I hope you’ll find something in this post that will help you keep going. Know that you’re not the only one going through this. I promise it’s not hopeless, no matter how sure you are that it is. ❤

Why I’m Doing Better Than I Think

These days, when friends ask how I am, I tell them I’m fantastic—and for a moment, I almost believe it.

I tell them about my new projects. I tell them about grad school in the fall. I tell them about a professional development program this summer. When I talk about everything I’m doing, I fool everyone—even myself—into thinking I’m healthy. Continue reading “Why I’m Doing Better Than I Think”

How I Finally Made Peace with My Lyme Diagnosis

“Close your eyes,” the Lyme specialist said. “And hold your arms out straight.”

My body began to jerk while I stood in front of the exam table with my arms extended. As I strained to stop the involuntary movements, I could sense my parents’ dismay even through my eyelids.

Continue reading “How I Finally Made Peace with My Lyme Diagnosis”

Is There Hope in the Unknown of Chronic Illness?

Three months ago, as I drove away victoriously from the IV infusion center for the ninth, and final, time that semester, I almost dared hope I’d left behind the last three years of treatments and relapses… Almost.

It was the end of my college career, and I’d just spent its entirety fighting Lyme disease and an autoimmune condition that doctors still aren’t sure how to treat—or what the long-term prognosis is. I’d not only juggled exams and papers and weird living arrangements for four and-a-half years, but I’d been battling through countless procedures and medications and appointments—always in the naive hope that my illness would soon be over. Continue reading “Is There Hope in the Unknown of Chronic Illness?”

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”

Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS

This week, I made the mistake of reading the PANDAS Wikipedia page, and now I’m boiling over:

“Treatment for children suspected of PANDAS is generally the same as standard treatments for [Tourette Syndrome] and OCD. These include therapy and medications…”
Continue reading “Why Therapy Isn’t Enough When You Have OCD & PANS/PANDAS”