Tag Archives: lyme treatment

REGAINING CONTROL …of your day, life… Why agency is important for Lyme warriors


by Jennifer Crystal

Agency—or, having a voice, having the power to make free choices about issues related to you or your body—has been a big buzzword in the news lately. I’ve been thinking about the word in the context of my own life.

For nine months, I was in a serious relationship with a man who seemingly understood and supported my needs as a chronic Lyme patient. And then, suddenly and without warning, I wasn’t. He decided he was done and simply informed me of his choice; I had no say in the matter.

Had the breakup happened mutually, or at least over time—with the discussion and effort we’d promised each other—it still would have been difficult, but at least I would have had some agency. And for a patient of chronic illness, that’s not a small thing.

Having the bottom drop out on my personal and emotional life was a sad reminder of the ways it had dropped out on me physically, many times. The chronically ill, and people who suddenly become sick or injured, are stripped of agency. It happens when we get sick without warning, when we can’t control how or if we’ll get better, when we’re dismissed by medical professionals. As a result, it’s that much more frustrating when we can have a say about something, but aren’t granted it.

Everyone deserves a voice. I learned this years ago as a summer camp counselor. During counselor meetings we would discuss issues campers were having due to behavioral challenges. A wise colleague taught us that every child needs four things: love, safety, fun, and power. When one of those basic needs is threatened, kids act out. I readily understood why children need love, safety, and fun. But I realized they need power, too, because they are often told what they can and cannot do; they don’t feel like they have a say over their lives. Giving them agency makes them feel more in control. Campers were less likely to break cabin rules if they helped create them.

When a Lyme Literate Medical Doctor (LLMD) finally put the pieces of my medical puzzle together and made an accurate diagnosis of Lyme disease—in addition to the co-infections babesia and ehrlichia—I at last felt I was heard and validated. Treatment was long and arduous and I had little control over how I felt day to day, but as I regained strength, I also regained agency. Over time, I could rely on my body more. I eventually knew when I would have good energy and when I wouldn’t, and learned habits to promote the good energy. I learned to speak up for my needs. Tick-borne illnesses were no longer completely running my life.

Then the bottom dropped out again: I relapsed. I fell into a pit of despair, not only because I was physically back at ground zero, but because I’d had no say in getting there. Sure, I’d taken on a lot and gotten overly stressed, factors that I now know can play a role in relapse. But the relapse itself was not my doing. That was up to the spirochetes that ran rampant in my body. I hated that I was once again at the whim of my illnesses, not of my own free will. I couldn’t work, live independently, exercise or do anything I wanted to do, and I railed against that loss of freedom.

Cognitive behavioral therapy helped me to take control over little things, even though so much was out of my hands. I had no say as to whether the antibiotics would work, how long it would take for me to get well, or if I even would. But I could control choices that would help my chances of my achieving remission. I could parse out my energy. I could limit screen time that riled up my neurological symptoms. I could eat healthy foods. I could say no to going somewhere or doing something when I didn’t feel well enough to do so.

And I could say no even if I did feel well enough to do something. One night during my recovery, my parents invited me out to dinner. It was a sweet and generous offer. They were surprised when I declined, because I seemed to have good energy that night. Why wouldn’t I go out if I could? But I didn’t want to go out to dinner. I wanted to stay home and have a little time to myself, maybe call a friend. Making decisions about what I wanted to do, instead of feeling like I had to do something just because I could, was an important way of maintaining agency.

We can’t always guard against the bottom dropping out in life. But sick or healthy, it’s important that we allow ourselves agency over those small things we can control. And it’s especially important for us to respect others enough to give them a say over matters that pertain to them or their bodies. We all want to take part in our own lives, not have life just happen to us. Everyone deserves that power!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: lymewarriorjennifercrystal@gmail.com

What to Do When You Hit a Plateau in Treatment

By Kerry Heckman

My numbers won’t budge. Every month I go in for a blood test and every month I get an email from my doctor stating that my inflammatory markers are the same. The numbers are not so high to cause a panic, but they’re not low enough to signal any real improvement either. I’ve tried everything from meditation to medication, but nothing seems to work. Each month I pray the numbers will drop and I’m devastated when month after month they stay the same.

I’ve put in all the work; there’s been no stinting. I’ve been in treatment for three years. I’ve changed my lifestyle, my diet, and most difficult of all, my mindset. But I keep coming up short. There’s no doubt I’m better. My bedridden days are mostly in the past, and the pain that keeps me up at night (painsomnia, I call it) happens once or twice week instead of every day. Another marker of my improvement is after treatment my herxheimer reactions are greatly diminished. These are positive trends, but still I am not where I want to be. I want clinical proof that my recovery is real. I want to know unequivocally that I’m heading toward remission. I’ve  been at this dreaded plateau for months waiting to break free. I anxiously await the day when my inflammatory markers take a dramatic drop.

Your plateau may be different than mine. Maybe you, too, made big improvements in the beginning and now it’s tapering off, or maybe you’re stuck waiting for any minuscule improvement at all. Either way the lack of progress may be the hardest thing to bear.

All this was weighing heavily on me. Then one day I started thinking about actual plateaus in nature. Consider for a moment you are climbing up a mountain and reach a plateau. You’ve done the grueling work of going up the mountain and now you are walking on level ground. You are still moving forward, that hasn’t changed, but you’re not increasing your elevation. Maybe that’s what plateaus are in treatment—a leveling off that doesn’t feel like progress, because you aren’t climbing anymore. But you have achieved an incremental improvement in your recovery.

This bit of visualization changed the way I thought about my lack of headway, though  there were still some questions I needed to ask myself— questions you may need to  ask yourself as well:

Q: Have I really plateaued or is my progress just going slowly?

A: With Lyme disease the improvement can be slow . . . very slow. As they say, any progress is good progress. If you feel comfortable with your treatment protocol, you may need to practice patience and remember you are getting better. However, sometimes the progress is too slow and even if there is incremental improvement you may want talk to your doctor about exploring ways to speed up your treatment plan.

Q: Have you hit a plateau before? What helped jumpstart my healing?

A: If this has happened before, what was it that made the difference? Maybe it’s a new supplement or an increased dose of medication. Maybe your thyroid or adrenals are out of balance and need attention. Try to remember back to what helped you before and try it again. It may help to keep a journal about what you think is and isn’t working for you.

Q: Do I need to change my treatment or ride it out?

A: As I said, with Lyme getting better takes time. Ask yourself if you think your current treatment plan is sufficient to to get you better. This is a good place to use your intuition. If you feel skeptical every time you meet with your doctor that might be your body telling you something.

Q: If I plan to stay the course when will I know it’s time to adjust?

A: Give yourself a timeline—six months, nine months—for when you want to reevaluate. Verbalize your timeline to your doctor, so she or he knows what you’re thinking. Ask if there is a test that can be run at that time to compare where you were before to where you are now.

Q: Am I testing too often?

A: If you’re like me and your numbers aren’t budging, maybe it’s time to put more space between tests. This depends naturally on what is medically advisable. But I I did realize that the constant testing was causing me frequent disappointments, which weren’t good for my healing. I have since decided to go from once a month to once every other month for my bloodwork and focus on other things in the meantime.

Q: Is there something else I could do to move forward?

A: A plateau is the perfect time to reevaluate your habits. Perhaps it’s time to add more nutrients to your diet or increase detox. Have you always wanted to try a complementary therapy? Now may be the time. Or are there other options?

Q: Is this a good time for a healing pause?

A: Have no doubts, recovery from Lyme treatment is a full-time job. It seems like there’s always something else you can try, but is that the best thing for your body? This could be an indication that it’s time to take a break from all the intensity and let your body rest at the top of the mountain.

Take some time and ask yourself these questions. Get quiet and let your intuition speak. There are few doctors, medications, or therapies that can give us as much insight as our own common sense. Remember the image of the mountain and keep walking forward on the level ground of the plateau—the uphill slope may be only a few steps ahead.


kerry heckman

Opinions expressed by contributors are their own.

Kerry J. Heckman is a licensed therapist and author of the healing and wellness blog Words Heal. She was diagnosed with chronic Lyme disease in 2016.

lyme warrior_lyme Q&A

Dear Lyme Warrior…Help!

By Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Below are her responses to a few recently received questions. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.

When a patient has a Herxheimer reaction, does she experience whatever symptoms are specific to her case, but enhanced? I have heart palpitations and headaches.

This is great question, coming on the heels of my recent column, What Does it Mean to Herx? As I explained, a Herxheimer reaction is when antibiotics kill off more Lyme bacteria faster than the body can eliminate, so there is a lag. This makes the patient feel worse before she feels better. For me, this resulted in increased sweating and elimination, as my body sought to detox itself. It also meant an increase of symptoms I had otherwise experienced at a lesser degree. I was extremely fatigued, had severe migraines, and my joints ached.

I never had a specific symptom like heart palpitations during a Herxheimer reaction. But, yes, on the whole it would seem that herxes bring out exacerbated versions of each of our own symptoms, since every Lyme patient experiences the disease differently. Some have heart issues, some have gastrointestinal issues, some neurological impairment while others have impairments which are strictly physical. Because spirochetes like to squirrel themselves away from antibiotics, getting deeper into joints and tissues and sometimes crossing the blood-brain barrier, it’s possible that new symptoms can crop up.

In my experience, this is not the result of a Herxheimer reaction, but rather a result of spirochetes growing and spreading. A Herxheimer is a reaction to dead bacteria in the body. Entirely new symptoms are more likely to be signs of live bacteria. If you’re suddenly experiencing new symptoms that do not seem to be part of a typical Herxheimer reaction, it’s important to check with your Lyme-Literate Medical Doctor (LLMD) to see if you might need different or additional treatment.

Have you dealt with Lyme depression? How did you motivate yourself when you had to go through a bout of this?

Yes. For many years I fought against the fact that Lyme made me depressed. But because so many people—including some doctors— told me that I wasn’t sickand that my symptoms were all in my head, I thought that if I showed any signs of depression, I’d simply prove those people right.

What I ultimately came to realize is that my depression was an effect of my tick-borne illnesses, not the cause. I was depressed because I was physically sick. I wasn’t physically sick because I was depressed. That’s an important distinction, and once you recognize it, dealing with your depression becomes easier to accept as part of a physical and neurological illness that affects you emotionally and mentally. It’s completely natural for someone who is physically sick to feel mentally depressed. When I grew sick, I quit my teaching job in Colorado and left the the skiing life I loved, I moved back with my family in Connecticut. Who wouldn’t be sad about that? Who wouldn’t get downhearted, anxious, and fearful about being bedridden?

Spirochetes running rampant in your brain, and even the side-effects of certain medications, can induce symptoms of depression. Your depression could be both situational and chemical.  It’s important to talk to your LLMD about your symptoms. It may even make sense for you to see a psychiatrist or a talk therapist, or both; there’s absolutely no shame in that. It’s all part of healing your whole self from tick-borne illness. I needed anti-depressant medication for a time and talk therapy as part of my overall medical plan. They wouldn’t have worked alone, since I was fighting a physical disease that needed its own treatment, but they were an important adjunct therapy.

In addition to seeking medical support, there are a few things that helped motivate me during a bout of Lyme-related depression. The first was to recognize that this, too, shall pass—even when I was feeling this way for weeks or months, even when it seemed like there wasno foreseeable end in sight to my illness. I promise you it does get better. In the  “Writing to Heal”classI teach, I draw a spiral on the board to remind students that grief—like recovery—is a spiraling process. It’s not linear. You go through some good periods, then spiral downward a bit, then buoy back to the surface again then repeat the spiral. It’s a tedious process, granted,  but as a whole, the spiral is always upward and forward away from illness and toward health. When you go through a bout of Lyme depression, you are not back to square one. You are somewhere further along that arc towards health, just currently at one of its low points. You have already come this far and you have to remain confident and keep moving forward, knowing that you will slowly get better.

To help motivate yourself, I recommend talking to supportive friends, getting lots of hugs from them, and have them tell you some funny stories. In other words, don’t lose  your sense of humor; (laughter can be the best medicine!). Moreover, journaling not just about how you feel but about what you hope your future will look like; doing simple arts and crafts like coloring or scrapbooking; listening to classical music; and treating yourself to something to like a bubble bath or a pedicure. Be gentle with yourself!


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

lymewarriorjennifercrystal@gmail.com

Chronic Lyme Disease Series: Kelly’s Story

By Kelly Gibson

Reprinted with the permission of itslyme.com
#MyLymeLife

With modeling, I was on my feet 8-12 hours a day on jobs or running from casting to casting, and was under severe pressure from my agents to look a certain way. I quickly began having symptoms again…

As an active kid growing up in New England, I was often playing outdoors behind our house, in parks, and on the soccer field. One morning in 2003, at age 10,  I woke up at my aunt’s home in New Hampshire with a sore spot on the back of my head. I couldn’t remember bumping it, and it didn’t hurt enough to mention that day. Two days later, my head was still sore. My aunt took a look, and noticed there was a tick embedded just above my hairline. The tick was extracted with a pair of tweezers, and nothing else was done.

For the most part from age 10-14, I was a normal, healthy kid. I hardly caught colds, and besides a broken arm or visiting my RN mother at work, I was rarely in hospitals. At age 14, I attended my first “Snow Ball”, our version of prom. About 40 minutes in, I had a nosebleed, blacked out, and then subsequently began vomiting. I was then taken home by a family friend, as it appeared as though I had been drinking – I had not. Having no other symptoms in the days following, no other treatment was sought.

At age 15, in addition to dance classes three nights a week, I decided to join the track team. During three out of my first five practices, I blacked out and vomited.  I was taken to a family doctor, who diagnosed me with a “sodium deficiency” as all my blood tests came back normal, but my sodium levels were slightly on the low side. The treatment? Eat more pepperoni and ramen noodles before track.

At age 17, I had started my senior year and had taken on a lot as Peer Leaders President, Student Council Vice President, Key Club Member, a High Honors student with two AP classes, and attending dance classes four nights a week after school. In November, I had suddenly felt weak after school one day. I called my dance studio to let them know I would not be coming, and instead went home and got into bed. I did not get out of bed for one week due to exhaustion, sore throat, weakness, dizziness, and headaches. When I decided to return to school the following week, I ended up blacking out and vomiting again. I was taken to the hospital to have tests done and an IV of fluids. All of my blood tests came back normal, with the exception of a mildly positive Epstein Barr Virus test. So when the speculation came down to anorexia, depression, attention seeking or EBV… EBV it was.

I had even more symptoms added into the mix… inability to stand for more than a few minutes without fainting…being the most compromising living in New York.

I was allowed to do the majority of the remainder of my senior year working from home and by graduation I had been feeling much better and therefore decided to continue with my plans to move to NYC for college the following autumn. As fun and exciting as NYC was, my health quickly declined- nausea, vomiting, dizziness, and headaches returned along with one new symptom: joint pain.  When I was home for winter break, I was taken to doctors again for another round of testing.  This time, the word “Lyme” had been mentioned. Sure enough, my Lyme disease test came back positive and I was immediately put on two months of Doxycycline. I began to feel much better, and more like my normal self. So much so, that I took it to the extreme and decided it would be wise to enter myself into the New York party scene. I did this for six months, and have never fully recovered.

By the time I saw Chronic Lyme Disease Researcher + Specialist, Dr. Kenneth B. Liegner in 2012, I had even more symptoms added into the mix: tremors, brain fog, muscle twitching, depression, and the inability to stand for more than a few minutes without fainting. The latter being the most compromising living in New York.  After an additional positive Lyme test, as well as positive tests for Babesiosis and arthritis, Dr. Liegner started me on continuous oral antibiotics (I haven’t stopped taking them since), and a few months later an 8-week stint of IV Rocephin. Both treatments had me feeling back to (almost) normal. I then chose another industry which was detrimental to my health: modeling.

With modeling, I was on my feet 8-12 hours a day on jobs or running from casting to casting, and was under severe pressure to look a certain way. I quickly began having symptoms again but was determined and thus continued to work. After two years, I was back needing to receive IV’s again & began seeing a new Lyme specialist closer to my parent’s home. Dr. Richard J. Dubocq did everything in his power to allow me to continue my modeling dreams. He understood I was going to do it anyway, so he might as well help me to accomplish it! He began to not only treat me with oral antibiotics but also with other medications to help with the symptoms I was experiencing. I began to feel better again, but with the physicality of working both in NY and Europe, I need another boost of IV antibiotics and another six-month rest before returning to modeling again.

I lasted 8 more months. During the February fashion week of 2015, my neuropathic symptoms got so bad that by the end of six days of shows, I had trouble walking, difficulty finding words, insomnia, minimal short term memory, and had a droop on one side of my face. This led me to once again, return home for rest and treatment. I finally decided enough was enough, and quit modeling for good. Six months later, I felt well enough on my oral antibiotics to begin working again. I took a part time job as a front desk associate at a spa near my apartment. As I began to improve and take on more, I had the ability to move up throught the company. Two years later I am the spa director for the location working 45-50 hours a week, and feel well enough to take a couple dance and fitness classes per month.

I still have symptoms, but am able to manage them and live a pretty full life, even though it is not the life I intended to have. After having Chronic Lyme Disease for fourteen years, and only being treated with antibiotics for the last seven, I will most likely never be “normal” again, but I am proud of myself and so thankful to my family, friends, and doctors for getting me this far.

Kelly’s Symptom Breakdown:

First onset Lyme symptoms: Dizziness, fatigue, severe headaches, sore throat, vomiting, blackouts.

Recall tick bite/bullseye rash: yes; not that I know of.

Diagnosis before Lyme disease: Sodium Deficiency, Epstein Barr Virus

Chronic Lyme disease symptoms: Headaches, extreme fatigue, facial paralysis, tingling sensations, stuff neck, swollen glands, sore throat, twitching of muscles, eye floaters, extreme menstrual symptoms, buzzing in ears, nausea, vomiting, night sweats, costochondritis, shortness of breath, mood swings, depression, anxiety, numbness in body, stabbing sensations in legs, weakness, tremors, difficulty walking, difficult finding words and forming sentences, forgetfulness, memory loss, and rashes.

Lyme disease & co-infections diagnosed by: Persistent symptoms, Western Blot blood test.

Kelly is still being treated with oral antibiotics for Chronic Lyme, Babesiosis, and Bartonella, but hopes to soon be able to decrease antibiotics and supplement with herbal and homeopathic remedies.

Never Give Up

by Jennifer Crystal

Lessons for Lymies from Winston Churchill and the Chicago Cubs

 

During the most intense period of my treatment for tick-borne illness, I lived with my parents and sometimes other family members. I shifted bases between their homes, grateful for the support of all, but keen to spread out the burden of caregiving. I did the hour-long drive between my mom’s and dad’s more times than I can count, traveling on a long, winding desolate road that connects two major highways in my home state. The route through rundown factories and old cemeteries was peppered with billboards. Among the advertisements for used car dealerships and discount insurance was a huge sign with a quote from Winston Churchill: “Never, never, never give up.”

That sign always gave me pause. Sometimes the drive took all my energy for the day. Sometimes I was too sick to be at the wheel, and one of my parents had to drive me. Sometimes I was in the midst of a Herxheimer reaction, getting the ride in early before the migraine and achiness and frequent trips to the bathroom made it impossible for me to be in the car. Sometimes I gripped the wheel or the passenger seat wondering if I would ever again have a home of my own, if I would ever be able to drive more than an hour, if I would ever feel well again.

The Churchill quote reminded me that in the middle of despair, when it’s least expected, we can come upon signs of hope. And it’s up to us to hold on, to keep traveling the difficult road, until we see them.

I was reminded of this lesson earlier this month when, after 108 years, the Chicago Cubs won the World Series. Despite their team being called “Loveable Losers,” Cubs fans held out hope for generations. The players went out every year determined that this could be the one. This year, it was.

blog_i-was-cheering_jc

The victory was the stuff of history books, and not just because it took108 years. It was the kind of nail-biting, late-night win usually seen only in movies. Following the Cleveland Indians’ 3-1 lead in the Series, the Cubs battled from behind to win two more games and force a seventh game tie-breaker. They were leading for most of that game, but the Indians suddenly took the lead in the eighth inning. The game tied in the ninth, going into extra innings, and then there was a rain delay. The possible victory could not have been more drawn out. Fans huddled together in the stands and the streets during the 17-minute delay. Players huddled together in the weight room, encouraging each other.

The rains came and minutes later, the 108-year drought was over.

My home state may be in New England—caught between the biggest team rivalry in baseball—but I was cheering for those Cubs as heartily as any Midwesterner. Because I know the road they’ve traveled. I know how easy it is to give up. And I know how much sweeter the victory is when you don’t.

I receive emails every day from patients who want to throw in the towel. Some are in the throes of Lyme treatment and can’t understand why they’re feeling worse instead of better. Some haven’t been accurately diagnosed because of the poor state of diagnostic testing or physicians misinformed about Lyme. All of them are desperate.

I know when you are in the depths of despair that it feels anything but temporary. There were times when I was curled in the corner of a room at one of my parents’ houses, sobbing and shaking, certain I couldn’t hold on another minute, another second. I never ever would have believed when I was bedridden that I would one day attend graduate school, publish a book, or teach writing classes. That I would one day live in my own apartment. It happened for me because I didn’t give up, and that can happen for you too.

Don’t just take my word for it. Look to other patients who have wrestled with Lyme, like Ally Hilfiger, author of Bite Me, and Katina Makris, author of Out of the Woods. Look at the incredible new research being done every day to create better diagnostic tools and treatments. This year Global Lyme Alliance received a record number of applications for research funding. Scientists at top-tier universities in the United States, Australia, France, Switzerland and the United Kingdom are all working to get to the bottom of tick-borne disease. They’re all working to make our lives better. And that means we can’t give up: on them, on ourselves, on hope.

With new research and increased awareness, I’m sure we won’t have to wait 108 years for our victory—or even a small fraction of that.  Better diagnostics, better treatment, greater understanding, and maybe even a cure are closer than we think. We just have to hold onto hope. We must never, never, never give up.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com.

The Bigger Picture: Part Two By Jennifer Crystal

Taking Care of Our Overall Health Within the Context of Chronic Lyme

In the first section of this series, I cautioned that not every ache and pain is Lyme disease; we must be sure to take care of our overall health, even when we are consumed by tick borne illness. What we also must remember, though, is that when something ailing us isn’t Lyme, it is affected by our tick borne illness, and vice-versa. When you have a chronic illness, that condition must be considered when making all other medical decisions.

Take the common cold. This age-old, mucus-infested ailment is begrudged by all. Whether you have a chronic illness or you’re otherwise the picture of health, getting a cold just plain stinks. But whereas most people can shake that cold in a week, Lymies and people with other ongoing illnesses have a much harder time fighting it off. Basic illnesses are not basic for us; they are possible cause for our underlying conditions to flare, because our immune systems are already compromised.

A Lyme patient can have a cold for a month, which can be difficult for healthy people to understand. Whereas most people’s symptoms gradually improve, a compromised patient may find the mucus growing greener and the cough getting deeper. Before long, the cold has turned in to an upper respiratory infection. And this is where Lymies can get into trouble.

Because most of us are on long term antibiotics, we have to keep those treatments in mind when considering management of an acute infection. This is not a problem when our primary care physicians are Lyme literate. They’ll be sure to put us on an antibiotic in a different family than the ones we’re currently on, for maximum effectiveness. I’ve been on oral antibiotics for years, and have never had a problem clearing up an acute infection with a different antibiotic.

The problem, though, is that it’s not easy to find a Lyme literate primary care doctor. When you’re sniveling with a sinus infection, you want to be in good hands. The last thing you need is someone who doesn’t understand your long term treatment protocol, or, worse, someone who questions why you’re on that protocol at all. It’s hard enough to fight that fight when you’re feeling sick from Lyme; add another infection on top of that, and you’re quickly trampled.

Not only do doctors need to understand how a new antibiotic will work (or not) with your current regimen, but they also need to understand how new treatment might affect your Lyme. Let’s say you didn’t have a cold, but your Lyme doctor suddenly decided to add an antibiotic to your usual cocktail. You might have a Herxheimer reaction; the same could therefore happen when an antibiotic is used to treat an acute infection.

We also need to keep this big picture mindset when going through “basic” medical procedures. Because of my tick borne illnesses, I know that it will take me longer than most people to recover from my wisdom teeth extractions. I also know that spirochetes like to hang out in gums, and that this surgery puts me at risk both for infection and for a Lyme flare up. Luckily, my doctor knows this too, and so she’s put me on a prophylactic antibiotic that works well with my usual treatment protocol and will help protect me through this procedure.

The key is making sure your primary care physician understands tick borne illness, and your management of it, before you get an acute infection. If your primary care doctor doesn’t believe in long term Lyme or doesn’t seem confident in your treatment, find a new doctor. I know that’s much easier said than done. For me, the important thing is not so much that my primary care doctor is Lyme literate (though clearly that’s the ideal), but that she’s willing to learn and willing to talk with my Lyme specialist to discuss treatment plans. I need to her to be willing to talk to me about what works best for me, and not jockey with me for control of my own health. Open-minded doctors are at least a little easier to come by than Lyme literate PCPs.

And, of course, as with your ongoing battle with tick borne illness, you are your best advocate. We patients are the front line of Lyme literacy. We need to understand our own illnesses and medications so that we can readily explain them to doctors. We need to keep tabs on what treatments have been successful for our past acute infections, and speak up when confronted with new ones. We must remember that tick borne illnesses are part of the makeup of our bodies; when acute infection or routine medical procedures strike, we need to keep that big picture in mind, for the sake of our overall health.

Lyme Disease Needs Better Test, Better Answers

Dr. Harriet Kotsoris, Chief Scientific Officer, Global Lyme Alliance and Dr. Mayla Hsu, Science Officer, Global Lyme Alliance

It’s now 35 years since a corkscrew-shaped bacterium was identified as the cause of Lyme disease. But we still have no safe and effective vaccine, no reliable diagnostic test and no adequate therapy.

What we do have is tens of thousands of lives annually devastated by significant health, personal and financial costs.

The National Institutes of Health, the leading funding body for biomedical research in this country, should scale up research funding for Lyme disease. In its absence, nonprofit organizations like ours have taken up the challenge, while hundreds of thousands suffer in misery from a spring fever that for some may not end.

Lyme disease, first described more than 40 years ago, now infects more than 320,000 Americans each year, and has been identified in every state. Transmitted by black-legged tick bites that peak in the warm months, Lyme disease is now the country’s most common illness spread by a bug bite. Symptoms range from skin rashes to fatigue and joint pain, and for most people, a few weeks of antibiotics are enough to clear the infection. However, researchers at the Lyme Disease Clinical Research Center at Johns Hopkins University have shown that about 10 percent to 20 percent of those infected progress to chronic multi-organ illness, such as severe musculoskeletal pain, cardiac failure and neural impairment, including memory and cognitive loss.

Although the causes of post-treatment Lyme disease syndrome, or PTLDS, are unknown, its devastating toll is well-documented. It’s a condition that can mean months and even years of disability, with a tremendous impact on school attendance and employment. Researchers at the Centre for Infectious Disease Control in the Netherlands calculated more than nine years of healthy life lost in people with persistent Lyme disease. Recently, it was estimated that health care costs for Lyme disease patients exceed $1 billion per year, according to Dr. John Aucott of Johns Hopkins University School of Medicine.

Early diagnosis, then, should be key to reducing this health and economic burden. What complicates the treatment of all Lyme disease patients, however, is the lack of a definitive diagnostic test. The standard blood test detects antibodies that recognize the Lyme bacteria, which is called Borrelia burgdorferi. This test is laborious and lacks sensitivity, correctly identifying only 29 percent to 40 percent of patients who have a skin rash commonly associated with tick bites. Furthermore, at least 20 percent of patients do not even develop a skin rash.

Read the complete article here.

The article first appeared as an op-ed in The Hartford Courant on March 6, 2016.

GLA Disagrees with NEJM Study Conclusions

The March 31, 2016 issue of the New England Journal of Medicine published a study of antibiotic treatment for long-term Lyme disease (Berende et al.). Individuals were treated with a two-week course of intravenous ceftriaxone, an antibiotic, followed by additional oral medications or placebo. The study concluded that longer-term antibiotic therapy for persisting symptoms does not confer additional benefits beyond short-term therapy.

We disagree with the conclusions of this study for the following reasons:

  1. This study compared shorter-term therapy (ceftriaxone followed by placebo) with longer-term therapy (ceftriaxone followed by more antibiotics), in patients with sustained symptoms. However, there was no “true” placebo group that was completely untreated. All three study groups reported significant, yearlong improvement in SF-36 scores, which measure health quality. The improvement could be attributed to the ceftriaxone given at the beginning, because even the group subsequently treated with placebo responded to the ceftriaxone after two weeks and beyond (Figure 2).
  2. Since they observed no significant difference in outcome in the various treatment groups, the study’s authors concluded that there was no benefit from continued antibiotics. However, with this study design, it is impossible to conclude that long term antibiotics are ineffective for treatment of chronic Lyme disease, as reported and distorted by the lay press.
  3. Doxycycline and clarithromycin, antibiotics used in two of the study arms, are poor at eradicating the antibiotic tolerant or persistent forms of Borrelia infection, which may be one cause of chronic Lyme disease (Feng 2015, Sharma 2015)
  4. Hydroxychloroquine is a drug used to treat autoimmune diseases. This was given along with clarithromycin to one of the three study groups. If persistent symptoms of Lyme disease are due to immune system malfunction, then we should have expected additional improvement, beyond that of the other two groups, after the three month treatment period. This did not occur.
  5. CDC diagnostic guidelines dictate that IgG, not IgM antibodies against Lyme bacteria indicate infection after the first 4-6 weeks. The patients in this study have had symptoms for more than two years. The authors do not explain why positive IgM was used as a criterion for inclusion into the study. These patients may be different than those who are positive for IgG.
  6. No consideration was given to co-infections by other tick-borne pathogens as the explanation for continuing symptoms which would not have responded to the oral antibiotics used in the study. Furthermore, the Borrelia species in Europe, where the study took place, differ in virulence and symptomatology from those in North America, limiting the study’s geographic relevance to that location.

Global Lyme Alliance (GLA) is disheartened by the inaccurate reporting and superficial reading of this study by the media and lay press. GLA has never blindly endorsed long-term antibiotic use for people with continued Lyme disease symptoms. In fact, GLA supports evidence-based, rigorous research into post-treatment Lyme disease in order to discover more effective antibiotic strategies. We are disappointed that this flawed study has been accepted without critical judgment.

The position of GLA is simple – Until there is an effective cure, the treatment of patients with tick-borne diseases should be in the hands of the physician.

For over 17 years, GLA and its predecessor organizations have supported research on behalf of the Lyme community. We have three major goals. The first is to reduce the number of new Lyme cases through awareness. The second is to reduce the number of patients who go on to suffer from chronic symptoms by funding research that will hopefully lead to better and earlier diagnostics, resulting in prompt treatment and fewer treatment failures. The third is to fund meaningful research leading to a better understanding of the chronic condition and effective therapies.

There are many unknowns in Lyme disease and other tick-borne illnesses. However, these facts are indisputable:

  1. There are over 300,000 new cases of Lyme disease every year in the United States, a number endorsed by the Centers for Disease Control and Prevention.
  2. At least 10% to 20% of these patients go on to experience chronic symptoms, including chronic pain, fatigue and neurological issues (Aucott J, SLICE 1). Chronic outcome is correlated with delays in treatment, truncated treatment, poor antibiotic choice, and a potentially inappropriate immune response to the pathogen. Even at the low end, this means 30,000 new chronic cases annually.
  3. Not every patient demonstrates a signature erythema migrans rash. We cannot rely on a rash to make the diagnosis.
  4. Current diagnostic tests may miss up to 60% of patients with acute Lyme disease. There is broad acknowledgement that the current diagnostic tests are unreliable.

In conclusion, we need truly controlled, well-designed clinical trials to identify efficacious therapeutic options for individuals with long-term symptoms attributed to Lyme disease. Unfortunately, the study by Berende et al. was not such a trial, and does not convincingly rule out long-term antibiotic therapy as a treatment for persisting Lyme disease. The search for effective therapies, which may include new antibiotic strategies, will continue.

10 Top Myths About Lyme Disease

Laughter Really Can Be the Best Medicine By Jennifer Crystal

January can be a tough month. With the holidays over and temperatures dipping to a deep freeze, the horizon can look as bleak as frozen tundra. This time of year is difficult for many people, not just those with chronic illness. The antidote I propose, humor, works universally.

Humor is known to reduce stress and anxiety. It’s said to help boost the immune system. In a 2005 Reader’s Digest article, Dr. Oz wrote, “When people use humor, the autonomic nervous system just tones down a bit to take it off high gear, and that allows the heart to relax.” Some hospitals now have “humor rooms”, and more and more “Laughing Clubs” are popping up around the nation.

That’s all well and good, I can hear you saying, but there’s nothing funny about chronic tick borne disease.

Fifteen-plus years with this insidious condition has taught me otherwise. Or rather, friends on the outside have taught me that it’s possible to look at my situation from a humorous perspective. At crucial low points in my journey, these friends put a twist on Lyme that turned my despair to laughter.

I’ve written before about the medical student I met in a bar who asked me quite seriously, “Are you sure you don’t have lemon disease?” When I heard the clause “Are you sure…”, I was prepared to battle with yet another doctor who, knowing nothing of my medical history, was about to question my diagnosis. What he actually said caught me so off-guard that I was, at first, stunned into silence. And then I burst out laughing.

As I often tell my writing students, humor opens people up, giving a writer the chance to then hit readers with something more serious. In this case, the joke about lemon disease let me know that this medical student appreciated the frustration of what I was expecting to hear, and recognized that taking a humorous approach to that expectation would open the possibility of a more serious discussion. I’d like to think the student and I both learned something that night: he about the patient’s perspective of tick borne disease, and I about humor’s power to disarm.

Another example happened many years earlier, when I had to step away from friends who were visiting, to take a nap. I hated missing any time with them, and felt silly and childish for needing to lie down. Ever the comic, my friend Pete diffused the situation by asking, “Do deer take naps, too?” Suddenly we were all laughing uproarously at the thought of tick-hosting animals settling down on the side of the road, tucking their front legs under their bodies like pillows. I traipsed off for my own nap with a smile on my face, which certainly helped me to rest easier.

My favorite example is from the eve of emergency gallbladder surgery in 2005. My intravenous antibiotics had unknowingly created gallstones as big as rolls of duct tape, causing excruciating pain and the dangerous possibility that my bile duct could burst. I was terrified. My dear college friend Elise listened to me cry on the phone, and tried everything to calm me down. Despite her best efforts, I was not soothed. Finally, Elise hung up and called her husband Mark, apparently telling him, “We need humor here.”

An hour later the following email appeared in my inbox:

The Top Ten Reasons Having Lyme Disease is Cool

By Mark Wilson

10. Arthritis, depression, organ failure, and insomnia—All For One Low Price!

9. You share something uniquely in common with Darryl Hall and John Oates (and now, updated version, Avril Lavigne)

8. Free research for your book about Lyme disease

7. “Finally! An excuse to quit work and live in my parents’ basement!”

6. Getting out of doing the dishes, because you can’t get your PICC line wet

5. Having people say, “Lyme disease—that’s the thing you get when you drink too many margaritas, right?”

4. Getting to hear people tell you, “Ohhh no, you don’t have a horribly debilitating disease! You’re just feeling a little sad right now.”

3. “Oh my God, sleep is sooooo overrated!”

2. It’s the official disease of the British Navy! (Limeys)

And the Number One Reason Why Having Lyme Disease is Cool:

1. If Jen Crystal has it, it must be cool!

That list was written over a decade ago, and it still makes me smile. Not only did it calm me down, it told me that my friends really got what I was going through. They understood my pain, frustration, and isolation enough to be able to make light of the situation. I felt reassured on so many levels, and went into surgery with a newfound calm.

While these examples helped me to poke fun at Lyme itself, humor of any sort can really be great medicine. When I was living back at my parents’ house and too sick to do anything on New Year’s Eve, my college friends started visiting me on New Year’s Day. They’d caravan to Connecticut from whereever they’d partied the night before, bringing hugs, smiles, and funny stories. They regaled me with tales that left me clutching my sides. I remember after they left the first time, my mother remarked, “I can’t remember the last time I heard you laugh like that.” The joy from those visits was perhaps the greatest tonic I got all year.

I recommend bottlefuls of this same “medicine” for everyone, especially during the dark days of January. Go ahead—laugh in the face of winter. All the cool kids are doing it!

New Grant Awards Gla’s Largest Ever!

GLA Awards Over $1 Million In New Grants!

Global Lyme Alliance (GLA), the nation’s leading nonprofit funder of Lyme and tick-borne disease research and education, announced today that it has awarded a record total of over $1 million in grants to eight researchers focused on post-treatment Lyme disease syndrome (PTLDS) or “chronic” Lyme.

“Although GLA’s scientific agenda—the identification, treatment and cure of Lyme and other tick-borne diseases—remains the same, this grant cycle we strove especially to award exceptional researchers advancing the science of post-treatment Lyme,” said Harriet Kotsoris, M.D., GLA’s Chief Scientific Officer. “Even with 21 to 28 days of antibiotic treatment, nearly 20 percent of Lyme patients exhibit persistent and debilitating symptoms such as fatigue and pain. We need to understand why.” In announcing the new grants, Dr. Kotsoris noted that GLA had received the most grant applications in its history—almost $3 million in funding requests.

“While we were pleased to receive so many quality grant applications this year, such a profusion underscores the fact that there are far more scientists competing for grants than there is funding to support them,”she said. “Federal funding of Lyme is, in fact, minuscule, yet the Lyme threat keeps growing. This speaks to the importance of GLA’s critical role in working with private donors to drive advancements in the field.”

The resulting GLA 2015-2016 grant portfolio is “outstanding,” Dr. Kotsoris said. “The quality of the proposals and funded grants continues to increase every year.”

The eight grants were awarded to: Armin Alaedini, Ph.D., Columbia University, NY; Nicole Baumgarth, D.V.M., Ph.D., University of California, Davis; Alla Landa, Ph.D., Columbia University, NY; Kim Lewis, Ph.D., Northeastern University, Boston, MA; Benjamin Luft, M.D., State University of New York, Stony Brook; M. Karen Newell-Rogers, Ph.D.,Texas A&M University; Eva Sapi, Ph.D., University of New Haven, CT, and Ying Zhang, M.D., Ph.D., Johns Hopkins Bloomberg School of Public Health, Baltimore, MD.

“GLA is proud to support the innovative research being conducted by some of the best and brightest men and women in the field today,” said Dr. Kotsoris. “We believe that the exceptionally talented scientists being funded by GLA will greatly contribute to advances in identifying the causes of PTLDS, how to reverse it, and especially how to treat the persistent infection.”

Among the projects being supported by GLA is the first human clinical trial for pain and cognitive impairment in chronic Lyme sufferers. The trial will be conducted at Columbia University under the direction of Dr. Landa.

Researchers were selected following a rigorous evaluation process using guidelines established by the National Institutes of Health (NIH). Each proposal was evaluated by Grant Review Committee members of GLA’s Scientific Advisory Board and met the same scientific standards that NIH applies to its own grant review process. The resulting 2015-2016 grant awards represent projects judged to have exceptional prospects of delivering measurable advances.

Lyme disease is the most common vector-borne disease in the U.S. with some 329,000 new cases reported in the United States each year, according to the Centers of Disease Control and Prevention. There are no accurate diagnostic tests for Lyme, no tests to prove that Lyme bacteria are eradicated or that an individual is cured. Some 15 to 20 percent of individuals with Lyme end up with long-term health problems.

About Global Lyme Alliance

Global Lyme Alliance is the nation’s leading tick-borne disease organization dedicated to supporting Lyme and tick-borne disease research and education. The 501(c)(3) nonprofit is headquartered in Greenwich, CT. For more information, call 203- 969-1333.