7 Foods to Combat Chronic Inflammation

by TBDA junior board member Lauren Sturges

“Well, what are your symptoms?” The five words that make tick-borne disease sufferers break into a nervous sweat. It isn’t difficult to describe a sore throat, runny nose, or the pain of a broken bone. But how do we find the words to describe the more unusual and ever-changing symptoms we experience?

One night in the ER, I stumbled over my words trying to explain what I was feeling. Frustrated, the nurse brought out a chart of smiley faces numbered from 1 to 10 by pain. “Which of these is you?” she asked. I wanted to laugh, but I didn’t want to be confused for smiley face number 1, who looked like he might have to wait a very long time to see a doctor.

Instead I said: “I’m not really in pain, I feel like I’m on fire, I feel tremendously uncomfortable, I’m so weak, I feel…..icky.” At the time, I didn’t realize that much of what I was struggling to describe was the intense widespread inflammation inside my body.

It isn’t surprising that many of us are at a loss for words in these situations. The majority of individuals aren’t accustomed to these sensations, and therefore commonplace terms have not been created for them.

As with many illnesses, tick-borne disease can cause agonizing internal inflammation that can hinder recovery. Even treatments, which do us well over time, can cause painful interim inflammation. Luckily, we can help combat this by the things we put in our body.

Below is a list of soothing food items that are easy to come by and delicious additions to any diet. Eating meals that include these foods helps to reduce chronic inflammation and the symptoms associated with it. Not to mention, these items are generally healthy and provide additional health benefits.

 

  1. Chia seeds: This superfood is packed with Omega 3 fatty acids, which function as one of the best natural anti-inflammatories. Chia can be used to crust fish, chicken, and tofu. I also use it in oatmeal and on salads. But perhaps my favorite usage of this seed is for sugar-free chia seed pudding — a recipe I will be sharing with you all in the coming weeks!
  2. Aloe Vera: If you think about the soothing effect it has on sunburns, it is no surprise that it soothes internally as well. Aloe has been used as a remedy against inflammation for thousands of years. It is particularly effective for the digestive tract. My favorite way to have aloe is to drink pure aloe juice in soda water with a little lime.
  3. Avocado: It is true that avocados are technically a fruit, but they are more vegetable-like in their nutritional value and contain less than one gram of sugar. Although they contain various anti-inflammatory properties, avocados are particularly superb for their complex phytonutrients. Bring on the guacamole!
  4. Dark leafy greens: Take your pick! Kale, spinach, collards, broccoli….each of these nutrient-dense vegetables can help cool down your inflamed body, as well as aid in detoxification. If you are among the green-wary set, I would urge you to look into green smoothies. There are some great recipes online that taste just like fruit smoothies and some even like milkshakes. I will be posting some of my favorites in the weeks to come.
  5. Ginger: The first of the anti-inflammatory spices, ginger, like aloe, has also been used as a remedy for ailments for thousands of years. Ginger is wonderful to eat alongside Japanese food, but I also use it minced in many of my smoothie recipes because it effectively cuts the pungent taste of vegetables.
  6. Cinnamon: This spice helps prohibit inflammatory activity and is also thought to have anti-bacterial properties as well. It doesn’t hurt that it is delicious and perfect for spicing fall foods and drinks. I use cinnamon in oatmeal and paleo pancakes. It is also useful in smoothies, as it cuts the taste of vegetables, much like ginger. You can find a great recipe for a cinnamon smoothie on my most recent column, “Healthy Mocha Frappe.”
  7. Turmeric: I’ll be honest, when I first began to research anti-inflammatory foods I had never tasted Turmeric, or at least never cooked with it. It seemed to pop up on every list as one of the most powerful anti-inflammatory foods. Once I started using it, it quickly became a staple in my kitchen. Turmeric is great on scrambled eggs and in chicken dishes. There are many wonderful turmeric root teas available online as well.

Happy cooking! I will make sure to make next week’s column a recipe that contains one of these foods.

Healthy Mocha Frappe

by TBDA junior board member Lauren Sturges

Lauren SturgesThe Frappe, which goes by many different names, is a staple at many of our beloved coffee shops. But if it tastes like ice cream to you, you aren’t far from the truth. The most popular version of this drink has more sugar than a king size Snickers bar.

Refined sugar doesn’t do the body any good, especially for those of us fighting illness. The toxic effects of sugar on our body are various, but most relevant to us is the inflammation it causes.

And sugar is in everything. Its addictive quality makes it a great hidden addition to milks, sauces, even potato chips. Thankfully, there are fine alternatives that are just as delicious and can help your recovery, rather than hinder it.

I tend to avoid agave, honey, and other unrefined sugars as well because there are plenty of natural sugars in fruit. So please enjoy this gluten-, dairy-, and refined-sugar-free frappe, a healthy version of its more popular, inflammatory cousin.

This smoothie is a great introduction to drinking vegetables for those of you who might be wary. In this Frappe, the veggies help to add nutritional value and give it a creamy effect without affecting the taste at all. The perfect drink when you’re in the mood for fall, but still enduring the heat waves of late summer.

Recipe:

In a high speed blender combine:

1 banana
1 cup unsweetened almond milk
1 Tbsp. coffee (decaf or regular)
1 tsp. unsweetened cacao powder
¼ tsp. cinnamon
1 ½ Tbsp. raw almond butter
1 small handful of spinach
½ an avocado
6 large ice cubes (add more if needed)
1 tsp. flax (optional)

Blend on high until thoroughly mixed. This one is topped with coconut shreds, hemp, and cacao nibs, but is just as delicious plain.

Enjoy!

When Life Gives you Lyme, Make Sugar-free Limeade

by TBDA junior board member Lauren Sturges

Lauren SturgesIt is often a strain to remember what life was like pre-tick bite. I find myself struggling to recall sitting down with friends and having pizza and beer, or leaving for a weekend without packing my body’s weight in supplements and medication. 

For so many of us, survival mode has become a constant state; and remembering better times is like trying to remember peace in the middle of war. I believe that anyone who has experienced tick-borne illness firsthand wouldn’t find this comparison far-fetched. We are truly at battle with our bodies, our insurance companies, our doctors, our employers, and even sometimes our own family and friends.

It is easy to get bogged down thinking about how different your life might be if you hadn’t gotten that fateful bug bite. I spent the first of my sickest months obsessing over every trivial decision and event that led me there.

PancakesFor dramatic effect, I wish I could say that I woke up one day with a new mentality, but the change happened slowly. I had just switched to a new doctor, who put me on a very strict diet. No dairy, no gluten, no sugar, no acidic foods, no red meat—the list went on.

Talk about insult to injury. I loved to eat. How could I survive this diet? Visions of lukewarm wilty spinach danced in my head. But I was willing to try it. Anything to get my life back.

It was tough at first. I became so put off of vegetables that I invested in a blender. I heard you could hide their powerful taste in smoothies. I was dubious, but shocked at how delicious my first creation was. It tasted almost exactly like a milkshake. 

I began to wonder what other beloved foods I could make healthy versions of. I was out of bed more and experimenting in the kitchen. Pizza, pancakes, even desserts were all possible with a little creativity (and Stevia). 

Smoothie BowlThen something wonderful happened. I started to feel better. My body became stronger and I began to do things I was worried I’d never do again. I could drive. I could grocery shop.  I could travel.

Social media was the perfect medium to share photos and recipes on. I connected with hundreds of tick-borne disease sufferers and others with chronic illness. I discovered that a clean diet helped people all over the world to find a better quality of life.

It makes sense. When we are sick our bodies are more vulnerable to the environment. We feel every indiscretion we make. But in this, there is a silver lining. We have the ability to listen more closely to our bodies’ needs and give them the tools they need to fight this battle.

For me, and so many others, what started as survival mode has become a better, more sustainable way of life. Sure, some days we must mourn our losses, but there is something to be profoundly grateful for. Tick-borne disease can force us to open our eyes to new modes of living, new inner resolve, and to flaws in the system that governs our lives. It can make us stronger people and wiser citizens.

I look forward to sharing with you each week the things that I have learned in my own battle, from eating clean on a budget, to introducing anti-inflammatory foods into your diet. I will also be sharing some of my recipes with you. I hope we can be an inspiration to each other to support our doctors’ protocols with healthy, healing decisions.

You can find me on www.Instagram.com/VirtualSpoons. I also have a Facebook account and Twitter under the same handle. My website www.VirtualSpoons.com will be up soon! 

Christina Kovacs, Creator of LadyOfLyme.com, Interview

Christina-Kovacs

Christina Kovacs is a friend of the Tick-Borne Disease Alliance and the founder of www.ladyoflyme.com where she blogs about her personal life and her treatment as a Lyme patient

1. When were you first diagnosed with Lyme disease? Were you diagnosed with any other tick-borne diseases? If so, which ones?
I was first diagnosed in September of 2011. I also found out I have Bartonella and Protomyxzoa (FL 1953), two other tick-borne diseases.

2. How long was that after you first developed symptoms or found a tick?
 That was 5 years after I began having symptoms. In the summer of 2006 I came down with what I thought was just a Summer flu, but I later learned was the first signs of Lyme disease. Things were never the same after that point, but no doctor thought to test me for Lyme until I got my diagnoses in 2011.   

3. What steps have you taken to help cope with your symptoms, both physically and online?
 The first thing I did when I finally got a diagnosis was research online about Lyme disease and other tick-borne illnesses. It gave me a sense of relief to learn that all these symptoms I am having are indeed linked to something and I would get better. Up until that point I was just very sick with no tangible answer. The best part of searching online was meeting other people who have been through the same thing and could offer advice and support. Tick-borne illnesses come with a wide array of symptoms, so being able to talk to others who get it and share tips for relief was a major blessing. An extra bonus was I met some inspirational people who had crossed the finish line & reached remission. It gave me the courage I needed to begin treatment & also something I could reflect on when I had a tough day. Just knowing that there is a light at the end of the tunnel is hands down the best way to cope.

4. How does encouraging and connecting with others in the Lyme community help you deal with the disease in yourself and/or your loved ones?
 I believe that knowledge is power, and the more you know about this illness the better arsenal you have against it. When you get diagnosed with Lyme disease you are thrown into a world with so many questions and not many answers. This is where connecting with those in the Lyme community was a true blessing. I was able to learn so much about Lyme and tick-borne illnesses from talking with others and vice versa. Once I felt like I had control of this disease, versus it having control of me, it changed how I could deal with challenges put forth.


5. What do you think is the most important thing about Lyme and other tick-borne diseases that the average person who hasn’t been affected by them doesn’t know and should?
 That ticks carry more than just Lyme disease. Although it’s the most talked about tick-borne infection I have never met a person with Lyme who has that alone. They will always have one or more tick-borne illnesses as well. Most ticks are infected with a multitude of diseases, and it’s really important to know that. Bartonella, Babesia, Ehrlichiosis, and many others can wreak havoc on your body, and are not to be taken lightly. Protecting yourself with a tick-repellant & doing full body checks when you come indoors is important no matter where you live. I want to emphasize that disease-carrying ticks are EVERYWHERE. They are not just secluded to the northeast.

6. What has been the most difficult challenge for you in coping with this disease?
 Personally, I had a hard time with putting my life on hold. I got into my dream school in Los Angeles, so I moved out there and began to study and intern in a field that I loved. However, this was the same time that my body began to fail me, and I didn’t understand why. I went to some of the top doctors across Los Angeles, but none of them could help me. I reached the point where I had to move back to Kentucky and leave behind everything I loved. I was still stubborn enough to keep up with online school while my parents and I drove all over the East Coast searching for an answer. By the time we got a diagnosis I had burnt my rope at all ends so to speak. Suddenly here I was at 23 years old with no career, living with my parents, and spending most my time locked in a dark room. It was a scary and hard place to find myself because it came so quickly. I knew this would be a long battle, and I wasn’t sure how to handle my life doing a 180-degree turn. It was a huge challenge to adjust to life with a chronic illness. No one can prepare you for the kind of emotional toll it takes.

7. How did you rise above it?
 I’m a very faith driven individual. I found peace with the situation by realizing this is part much bigger plan for my life. I also joined Lyme support groups and connected with people my age who were going through the same things I was. Finding people who understood me was incredibly therapeutic and helped me not feel so alone in this battle. Along the line I made two friendships where if you took the illness out of the equation we still would be great friends because we got each other on every level. I could talk about struggles openly which they faced too, and still share laughs about every day things. It was a turning point where I truly rose above my challenges because it reminded me that Lyme did not define me, and it wasn’t who I was. Although my life had been altered from the norm I actually still had a lot of parts of me very much in tact. Before, I compared myself to my friends who were living normal lives, and when I did that it just reminded me how “abnormal” I was in comparison. I finally stopped comparing my life now to my life before Lyme, and found peace...I fully credit those friendships for that. I strongly recommend connecting with others if you are suffering from any tick-borne illnesses.

8. What would you like to see change in the future in relation to Lyme and other tick-borne diseases?
 Hands down I would say I want to see a change in how patients of tick-borne illnesses are treated. Across the board from Doctors, Senators, family/friends, I want to see all tick-borne illnesses get the recognition they deserve for being deadly life altering diseases. Right now patients have to fight to get proper care or to be taken seriously when they are in insurmountable amounts of pain. I want to see the day when people get respect and help for the hurt they are going through. That’s why Bite Back for a Cure was such a perfect fit to get involved with. I believe in this mission 100%, the first step to getting adequate care is to take the message to Washington where real change is made.

 

9. Do you have any favorite holistic methods that you use to alleviate and reduce your symptoms that you’d like to share?
 My go-to item is a supplement called Burbur. It’s an herbal tincture used for detoxification that has saved me from the grips of an awful herx many times. It comes from the Burbur leaf and drains the kidneys, liver and lymphatic system. It works as a quick and powerful detox that I use when I start to feel myself slipping under and feeling terrible. If I could only keep 1 single supplement out of everything I had, I would hands down choose Burbur, because it’s quick, its gentle, and it works every time.

10. Is there anything I didn’t ask, but you would like others to know about Lyme and other tick-borne diseases?
 This isn’t specifically about Lyme, but I want to touch on the topic of how crucial support is for those suffering, because the symptoms aren’t always visible. To everyone out there who has a loved one with Lyme disease & co-infections, I want to say that the most important thing you can do is believe them. Having an invisible illness means you look perfect on the outside while being broken on the inside. It comes with a lot of judgment from others, and feeling like you have to constantly prove yourself to feel understood. Having someone say, “I believe you” is most powerful thing you can hear.

 

Christina Kovacs is a friend of the Tick-Borne Disease Alliance and the founder of www.ladyoflyme.com where she blogs about her personal life and her treatment as a Lyme patient.

 

Don't Let Ticks Ruin Outdoor Fun

 Early fall boasts some of the best weather of the year with temperatures that aren’t too hot or too cool. This makes it a perfect time to head outdoors with friends and family for hikes, bike rides and picnics.  

For U.S. residents living in the northeast, mid-Atlantic, and upper north-central regions, ticks, and the diseases they carry, may put a damper on outdoor fun.  This doesn’t have to be the case! With proper knowledge and a few prevention tips, everyone can embrace and enjoy nature. 

Ticks are ectoparasites, or parasites that live on the outside of their host. They are not insects, but are closely related to mites, spiders and scorpions. Ticks can be very small, varying in length from 1/8 to 5/8 of an inch long. They are usually a shade of brown, so they may be difficult to spot on the skin or even misidentified as a mole. Common problem tick species include the American dog tick, deer or black legged tick and lone star tick.  

There are four stages in a tick’s lifecycle – egg, larva, nymph and adult. Ticks have only six legs during their larval stage and eight legs during their nymphal and adult stages. They consume blood meals during all stages. Pathogens, or organisms that cause diseases in the animals they infect, can be passed through each stage of a tick’s lifecycle. Females and males of most species feed on blood of mammals, birds and reptiles. 

The Centers for Disease Control and Prevention (CDC) recommends avoiding areas with a lot of plants and leaf litter, but that’s hard to do when you’re hiking through woods. Instead, try sticking to the center of the trail and use a repellent containing 20 to 30 percent DEET on your exposed skin. The CDC also recommends treating clothing and gear with products that contain permethrin, or wearing clothing that’s already pre-treated.  It is always best to wear long-sleeved shirts and long pants when working outdoors near woodlands, fields and areas with shrubbery and tall grass.  Choose light-colored clothing so ticks are easier for you to see, and tuck pants into socks or boots to prevent ticks from crawling under pant legs. Always check your body and your pet’s body right after spending time outdoors in wooded or grassy areas. You should also bathe or shower as soon as possible after coming indoors to wash off and more easily find crawling ticks, before they bite you.  

Correctly identifying the various tick species is a critical step in managing the populations in your yard, which is why it’s important to contact a pest control professional like Orkin.  You can make your yard less attractive to ticks by clearing shrubbery and grasses and mowing your lawn often so the grass is short. Then, consider contacting a pest-management professional to complete the treatment. 

If you do find a tick on you or your pet, remove the tick with tweezers only (bent, “needle-nose” tweezers are best).  Using alcohol, nail polish, hot matches, petroleum jelly or other methods to remove ticks may actually traumatize ticks, causing them to regurgitate and infect you with disease or bacterium.  Also, do not squeeze ticks.  Gently, but firmly, lift them at the head with the tweezers.   

With the proper knowledge and some prevention tips, ticks don’t have to ruin your outdoor fun. Get outside! Enjoy hiking, biking and all your favorite outdoor activities before cold winter temperatures drive you inside your home! 


Kim Kelley-Tunis is the Diector of Technical Services for Rollins, Inc., parent company for Orkin.

 

 

Fighting For My Life, Awareness & Understanding

Tick-borne disease takes active human beings with healthy, full lives and replaces them with debilitating physical problems, cognitive/neurological issues and an overall significantly poorer quality of life. For the last several months while I’ve been on treatment, I have been angry at how horribly inconvenient this disease is. It ruins my plans, my family responsibilities, my daily routine and my social life. I am frustrated that I can't trust my mind to work the way 
I'm accustomed to it working. There are days when I can’t recall a recent memory that my family or friends are talking about and sometimes I can't even remember how to spell simple words. I can barely think in complete sentences when the pain strikes and if it's accompanied by nausea, my day is completely wrecked. This illness is terribly unpredictable and I absolutely HATE that. I hate that I have had to cancel and drop out of things I committed to do, all because of my physical limitations. It is a horrible feeling to know that just about everything, including my passions and the loves of my life, are affected by my disease. 

That being said, even with all of the horrible problems that come with tick-borne disease, I believe one of the worst problems I have encountered so far is the disbelief of others: the questioning looks, the "But you don’t look sick" comments that are so often heard by chronic Lyme sufferers, not to mention the continual inquiries as to when I’m going to get better.

Last year, I was having a terrible time finding a treatment that produced any results. I had tried everything with very little to no improvement. It was during this time that my disease was totally minimized in a way I had never experienced. I have had doctors tell me they weren't going to help me anymore or run tests for my "symptom of the week." They have asked my husband privately if I was making everything up and I have been told to my face that I am just depressed and need to see a psychiatrist. I have been made to feel like I was crazy and not really sick, even as my entire body was painfully aching and my bones felt like they might explode any minute from the intense burning pain. This feeling of abandonment by the medical community--and even society--is an isolated and lonely place. But for some reason, even though it was unbelievable, I chalked it up to doctors that were uneducated on tick-borne disease or who, instead of admitting that they had no idea what was causing my symptoms, wanted me to believe I was crazy/depressed and be ok with non-diagnoses like “Fibromyalgia” or “Chronic Fatigue Syndrome.” I could rationalize their reactions, especially when I finally got a diagnosis and blood test results that definitively and scientifically revealed that my body was
 definitely fighting tick-borne diseases -
and not just one, but three. My
 validation celebration was short-lived,
however because doctors continue to
question me. My primary care doctor
 still gives me cockeyed glances when I
 tell him about the treatment my LLMD 
is giving me - all because tick-borne 
diseases are ignored and myths are still 
perpetuated in the medical community. Doctors are not being educated on the scientific, factual evidence that supports that chronic Lyme disease not only exists, but is drastically under-reported.

One morning last fall, as I struggled to get out of bed with joint pain and muscle stiffness. It felt like gravity was against me and weights were on my back as I slowly got ready for the day. I was scheduled to volunteer at my girls’ school and I was determined to be there, despite my fatigue. This may not seem like a big deal, but most days I have to mentally and physically prepare myself the day before I leave the house for a two-hour "trip" to my girls’ school that is just down the road. When I get home from simple activities like going to the store or volunteering, I feel like I've run a marathon and it is vital that I don't schedule anything the next day, so I can rest up from my "day out." It feels like my body is a prison, from which escape is impossible. 

I arrived on time and sat next to another volunteer mother, as I cut out shapes and letters from colored construction paper. My mind was very foggy as I attempted to be friendly and talkative. I felt terrible and was very uncomfortable, but I pushed through the pain. As we chatted, something in the conversation led to the upcoming fall field trip and she asked if I was going. I told her I really wanted to, but my husband would probably go. Then she asked if I was the room mother for my daughter’s class. I told her briefly that I had been planning on it, but was unable because I had chronic Lyme disease and I couldn't trust my physical abilities from day-to-day. I didn’t even have time to regret saying the words "chronic" and "disease" before she said with a laugh, "Oh! Well, maybe that's what I have, too because I'm not feeling great today either." This was after telling me about how even though she is a stay at home mother, she has a part- time job, because she can't stand to be at home all day due to boredom and has too much energy, so she likes to keep as busy as possible. I used to be the same way and I cringed inwardly at the memory of “my life before Lyme.” The reality of just how much Lyme is not taken seriously hit me like a ton of bricks. I realized in that moment, that my mission was to educate everyone I knew about tick-borne diseases. 

For some reason, the flippancy of the words pierced me differently than other responses to my illness in the past. I know she was probably just uncomfortable talking about sickness and disease - most people are. She may have just meant to change the subject and I'm sure she didn't mean for her words to be hurtful. But because she was ignorant about chronic Lyme and tick-borne disease, the words hurt and invalidated me. I felt really small in that moment. I think it was made worse because it was coming from a woman, a mother - someone who is in the same stage of life as me so it really stung. It hurt to hear how others may view my illness. In a heartbeat, everything I go through was minimized. I felt like I was minimized... and simply because of the lack of awareness of chronic Lyme disease in our society. I'm certain if I had said I was in treatment for cancer, those words would not have been spoken. Our world needs to wake up to the fact that tick-borne disease is a deadly, fast-growing epidemic. We must not only educate for our own sake, but for the healthy who are not yet affected. 

The pain, frustration, and heartache that I have become accustomed to with this disease was laughed under one’s breath as if I had apologized for having a runny nose. She just didn’t know it was serious. One cannot relate to something that one knows nothing about. I would love to be on the other side of the conversation. I would give anything to not be the one who understands what it’s like to live in constant pain, but because I do and because I have experienced the loss of a healthy body, I want others to learn from my experience. 

Those of us who are struck down by this awful disease, we must raise our voices to educate our family, our friends and the world, so that ignorance of Lyme disease will be obliterated and awareness, education and advocacy will take it’s place. We must replace the outdated myths with facts and the lies with truth. We fight for our lives every single day and because of the ignorance in the medical community, we even have to be responsible for our healthcare, so we are the only ones who can tell others exactly what these diseases can do and how devastating it can be to have our lives ruined by a tick bite. We cannot afford to be silent about our struggle. No one will ever be able to fully “get it” unless they “get it,” but in the very least, they can learn a few facts about Lyme, so that when a stranger or an acquaintance mentions chronic Lyme disease, they will respond with love and understanding. My hope is that in the very near future, the truth about tick-borne diseases will become so known and acknowledged that this post will be obsolete and no one will be negatively affected by a lack of awareness of the disease. We must make the changes now so our children’s future and their children’s future is not affected by an ignorance and denial of a very real disease. 

One patient’s perspective

Originally published on boston.com.

Recently, I interviewed a local Boston doctor to see if he might be a good primary care physician for me. My requirements were fairly straightforward, ones that anyone would seek: a compassionate bedside manner, solid commitment to the patient’s long-term health, and admitting privileges at a top hospital.

The doctor met all of these criteria, but in the end, we were not a match. Why?

Because I was also looking for someone who could get behind my long-term treatment for chronic tick-borne diseases, someone who would be willing to work together with my Lyme disease specialist. This doctor told me he treats Lyme only by the book, and could therefore only meet me so far in his support. He follows the guidelines set by the Infectious Diseases Society of America and the Centers for Disease Control and Prevention, which state that most cases of Lyme disease can be treated with just a few weeks’ of antibiotics.

That, for me, was a deal-breaker.

As I outlined in an article I wrote for Boston.com last year,I was bitten by a tick in 1997 but was not diagnosed with Lyme and two of its co-infections until 2005.

By that time, the bacteria had spread to every system of my body and crossed the blood-brain barrier, damaging my central nervous system. Because the infection was so severe, long-term antibiotics were the only course of treatment that would work. Adjunct remedies like physical therapy, bioneurofeedback, nutritional supplements and dietary restrictions helped me on my path to wellness, but without long-term antibiotics, I never would have gotten better.

Three weeks of antibiotics would have only made a small dent against the infection that was waging war against my whole body. Cutting Lyme treatment short is like radiating a small portion of a tumor and leaving the rest to metastasize. No doctor would allow that for a cancer patient; why should it be acceptable for another illness that has been proven to self-replicate and spread?

One concern some doctors have is that long-term antibiotic treatment might do more harm than good. Letting an infection continue to spread untreated is arguably more damaging than any medication. Cancer patients are willing to lose their hair or suffer other adverse effects of chemotherapy because the alternative is far worse. The mentality is no different for patients with chronic Lyme, but luckily, antibiotics tend not to have such severe contra-indications. I personally did suffer from one of the more rare side effects, gallstones. Doctors are becoming more and more aware of that problem and are either using antibiotics that are not known to cause gallstones or are checking regularly for gallbladder trouble. A good Lyme literate physician will routinely run labs to make sure that vital organs are not being affected by antibiotic use. During my most intense periods of treatment, I had blood work done once a week.

Another concern is that long-term antibiotic use creates resistance, such that antibiotics won’t adequately attack other infections in the body. A good Lyme literate doctor is aware of this possibility and works to prescribe against it; he/she might change up antibiotics, or stick to certain families not used for more common infections. If teenagers can take years’ worth of antibiotics to combat acne, why shouldn’t the same be true for patients with a serious illness?

In the time that I have been on long-term antibiotic treatment, I have had two sinus infections and one ear infection. These infections responded to and were cleared up by short courses of antibiotics that were different from the ones I ordinarily take.

The doctor I interviewed admitted that I am living proof that long-term antibiotics work in the treatment of chronic Lyme disease. However, until he sees cases like mine published in a study—until he sees guidelines changed to meet growing patient evidence—he is not willing to step outside the box in his own treatment.

In many ways, I don’t blame him. Lyme is a politically polarized disease, and I understand that a doctor with no vested interest in tick-borne illnesses might want to avoid this quagmire altogether.

With tick populations on the rise, however, the Lyme disease predicament won’t soon go away. And the more cases that go undiagnosed and untreated, as mine did, the more patients are going to be turning up in doctors’ offices—maybe in the office of the doctor with whom I spoke—looking for answers.

So what is the answer? My experience tells me that the best defenses against chronic tick-borne diseases are prevention and early detection. The more people become comfortable with identification and removal of ticks, and signs of infection, the less chance they will have for that infection to be missed. Many cases of Lyme are misdiagnosed or undiagnosed because tests are unreliable. Moreover, not enough doctors know of early signs and symptoms to watch for.

Most Lyme disease cases that are caught right away can be treated with a few weeks’ worth of antibiotics. Patients who remain sick are not often ones who were treated immediately; they are patients who were never treated at all. They are patients like me, whose infections ran rampant for too long before accurate diagnosis and treatment. If more cases were detected early, the issue of chronic Lyme might not be an issue at all. Conversations like the one I had with the doctor in Boston would be moot. If I had been treated with a standard course of antibiotics back in 1997, I wouldn’t have chronic Lyme. I wouldn’t be fighting this fight. But I’m here, telling my story, in the hopes that it will become the exception and not the rule. And that’s something I think people on any side of the Lyme debate can get behind. 


jencrystalJennifer Crystal is a graduate student in Boston, where she is working on a memoir about living with chronic tick-borne disease. Last year, her team the Spirochete Smashers was honored by Senator Blumenthal for their dedication and commitment to the eradication of Lyme disease in the state of CT.

John Donnally, Bite Back for a Cure Cyclist, Part 2

John DonnallyJohn Donnally suffers from Lyme Disease. Despite his illness, John is an active cyclist and will be cycling across the country on the Bite Back for a Cure National Tour.

What would you like to see change in the future in relation to Lyme and other tick-borne diseases?

I think new scientific research that leads to 100% accurate diagnostic tests and better treatment options is crucial. Insurance that covers testing and treatment also has a real urgency; right now, patients either pay obscene fees or suffer. Both are unacceptable. Generally, I’d like to see increased physician and public consciousness about TBDs. Getting more accurate reporting, collaboration among national and local TBD organizations, facilitating conversation between opposite camps of thought in the medical community, and just creating more open dialogue about these illnesses, are all ways to raise public consciousness. 

While we crave coherence, the TBD conversation is a hurricane of controversies and these controversies must be unpacked and worked out by patients and physicians. We need to acknowledge that ambiguity is the rule when it comes to TBDs, and though we may not have complete control over the research and can’t wait on it, we can be open about our experiences. 

What inspired you to lead the charge on Bite Back for a Cure? 

Lyme disease is something I’ve had a long-standing history with, and for about a year I’d wanted to do something substantial to increase awareness about it. The reality I care about most is that people, right now, are unknowingly suffering with this silent killer, and I hope that my efforts can save them from going through what too many TBD sufferers have endured already. It’s an issue that so desperately needs attention and by partnering with TBDA, I think we can make a real difference. I want to use my whole influence—my athleticism, my mind, my youth, and my generally good health—while I still have it to put TBDs on a national stage. I’d like to really broaden the discussion of what these diseases mean by sharing the stories of TBD patients. 

Recently it’s been real interesting because almost every time I tell people about my bike ride, either they or someone they know suffered with a TBD and usually with a late-stage, multi-systemic infection. At first, I thought these encounters were just chance occurrences, but I now realize they are indicative of just how prevalent and threatening these diseases have become. I hope my involvement can help raise awareness about TBDs and generate funding for new research to eradicate this public health crisis.

This is the second part of a two part interview with John, be sure to read the first part if you haven't already.

Fatigue

A few weeks ago, there was a small fire in my apartment building which necessitated three separate evacuations between the hours of 2:00 and 5:00am. Needless to say, it was a long night, and no one got much sleep. The next day I felt buzzy and glazed over, the same feeling I used to get in college when I stayed up too late writing a paper. I was tired, but it was normal tired, not sick tired. It’s a difference Lymies can recognize all too well, but one that’s hard to distinguish when we talk about a general symptom of fatigue. 

Fatigue can mean a lot of things. It can mean muscle soreness after a bike ride. It can mean feeling drained after a long day at work. It can mean droopy eyes, the desire to take a nap, the need for an extra cup of coffee. It can even mean the buzzed feeling I experienced after a night of little sleep. All of these descriptions fit into the category of “normal tired.” What makes them normal is the base level of health underlying them. If a person is otherwise healthy, they are able to push through symptoms of normal fatigue because their adrenals are working properly and their bodies are not worn down from fighting infection. 

“Sick tired” is another story. The fatigue of tick-borne diseases is not a general malaise that can be fixed with a nap or a cup of coffee. It is a crippling flu-like exhaustion, one that leaves muscles not sore but literally unable to function; one that makes the body feel shackled to the bed; one that makes the effort of lifting one’s head off the pillow seem like a Herculean feat. There were times, at my lowest point of illness, when I literally felt too tired to breathe. 

It’s hard for someone who has never been that sick to understand what a person with chronic tick-borne illness means when she says, “I’m so tired.” I’ve had well-meaning friends say, “I’m tired a lot too,” but in the next sentence they tell me that they’re going to the gym or planning a party. This means they are “normal tired,” and while I sympathize with that, I wish there were more specific nomenclature to distinguish between our two very different definitions of fatigue. 

This lack of distinction is especially unfair to patients with chronic fatigue syndrome, a nebulous umbrella under which many Lymies fall. “Fatigue” is hardly a strong enough word to cover what it feels like when you’re adrenals are shot, your nervous system has gone haywire and your body refuses to function. Even as a writer, it’s hard to articulate exactly what I mean when I use the word exhausted. My best effort at putting “sick tired”—specifically, the sick tired of chronic tick-borne disease—in layman’s terms is, Imagine you’ve partied all night and wake up with the worst hangover you’ve ever had. Your head is pounding. You’re overly sensitive to light and sound. You stumble to the bathroom and barely make it back to bed. Whatever you originally had planned for the day—work, homework, a run—is out of the question. You’re not sure if you’ll even be able to manage basic tasks like bathing and eating. You roll over and go back to sleep. Then imagine you wake up the next morning with all of the hangover symptoms still there, but now, you also have the flu. Not just a mild case of the flu, but a full-on bout of intense fatigue coupled with aches, fever and chills. Imagine this feeling goes on for days, and then weeks, and then months, sometimes even years. That’s Lyme disease.

It took years of medication, alternative therapies and hard work for me to get out of the rut of “sick tired” and battle my tick-borne diseases into remission. However, I still have to be very careful about pacing myself, or my “normal tired” can quickly slip into “sick tired.” The day after the fire alarms in my building, I had to cancel everything on my schedule and just sleep. Some may say it was a luxury that I was able to do this, but I see this one day “off” as a preventative investment against the weeks or months of them that can come back if I’m not careful. 

By the same rationale, I take a nap every afternoon, without exception. If I don’t, I hit a physical, mental and emotional wall, melting down like a small child. Pushing through naptime causes me to go into a state that I call “pulling”—a feeling of having to pull myself through the rest of the day, and perhaps the following day, until I can get adequate rest. Without it, I am too tired to walk distances that are otherwise easy for me; I can’t think straight and mix up or forget my words; I overanalyze everything and become emotionally off-keel. Napping for me is thus not a luxury, but a necessity. In essence, I heed the alarms of my body, putting out the small fires before the blaze becomes out of control. And that makes nights with real fire alarms manageable. 


jencrystalJennifer Crystal is a graduate student in Boston, where she is working on a memoir about living with chronic tick-borne disease. Last year, her team the Spirochete Smashers was honored by Senator Blumenthal for their dedication and commitment to the eradication of Lyme disease in the state of CT.