Tag Archives: lyme diagnosis

Lyme: The Differential Diagnosis

By Jennifer Crystal

With overlapping symptoms, how do you know that you have Lyme and not another disease? It’s important to consider all health factors

A patient recently asked me, “How do you know you have Lyme and not multiple sclerosis or chronic fatigue syndrome? It sounds to me like you have chronic fatigue syndrome.”

I understand such questions. They come up because Lyme is considered the “great imitator.” Many of its symptoms are similar to those of other illnesses such as multiple sclerosis (MS) and chronic fatigue syndrome (CFS), as well as rheumatoid arthritis (RA), Lou Gehrig’s disease or amyotrophic lateral sclerosis (ALS), lupus, and fibromyalgia. If a doctor is not well-versed in tick-borne disease, they might have difficulty making a differential diagnosis—differentiating between Lyme and other diseases.

However, there are important distinctions between these conditions. For example, Lyme arthritis can affect one, few, or many joints, whereas RA tends to affect most. While synovitis (inflammation of a synovial membrane) can mean Lyme or RA, only Lyme would show fluid in the sub-patella area.[1]A good Lyme Literate Medical Doctor (LLMD) understands such nuances.

I know I have Lyme because I had an unequivocal CDC-positive test. I also tested positive for two tick-borne co-infections, babesia and Ehrlichia. I presented with specific clinical symptoms of these diseases and the tests corroborated my LLMD’s clinical assessment. He knew that my low CD-57 test was indicative of Lyme, because ALS and MS don’t usually have low CD-57 counts. He knew that my hallucinogenic nightmares and other sleep disturbances were a sign of neurological Lyme and babesia (later confirmed by a SPECT scan), and he knew that my migratory on-and-off aches were typical for Lyme, not RA (which are more symmetrical and persistent). Moreover, he recognized that my crushing fatigue was a result not just of my tick-borne illnesses, but also of my underlying Epstein-Barr virus.

Yes, you read that right: I write primarily about my tick-borne diseases, but they’re not my only medical conditions. So in some ways, the patient who questioned me was not incorrect; I do have CFS, or a version of it called chronic fatigue immune deficiency syndrome. It stemmed from a case of mono that became chronic Epstein-Barr virus (EBV) because I had underlying tick-borne infections that prevented me from adequately fighting the mono.

Here’s the rub with these umbrella diseases, diseases under which a number of symptoms fall: often patients have more than one of them, or their symptoms fall under the broad spectrum of more than one, because what they’re battling is actually a multi-system immunological breakdown from years of health issues. As Richard Horowitz, an LLMD, states in his book Why Cant I Get Better? Solving the Mystery of Lyme & Chronic Disease, “Identifying the multifactorial causes of chronic illness is the next most important paradigm shift in medicine.”[1]

To consider all health factors in making a differential diagnosis, Dr. Horowitz uses a detailed Lyme multi-system infectious disease syndrome (MSIDS) questionnaire based on one originally created by another prominent LLMD, Joseph Burrascano. This health map looks at Lyme disease, co-infections, other bacterial infections, viral infections, parasitic infections, and fungal infections, and takes into account immune dysfunction, inflammation, environmental toxicity, allergies, nutritional and enzyme pathways, mitochondrial dysfunction, neuropsychological issues, autonomic nervous system dysfunction, endocrine abnormalities, sleep disorders, gastrointestinal abnormalities, abnormal liver functions, issues with pain, drug use, and physical conditioning.[2]

As Dr. Horowitz notes, “This process ensures that no symptoms are left out and gives the provider an initial opportunity to develop a broad range of differential diagnoses…It provides the health-care provider with clues that point to whether the patient has a high probability of having Lyme disease, a possible case of Lyme disease, or is unlikely to have Lyme disease.”[3]

Other LLMDs use similar broad-spectrum evaluations to make differential diagnoses. Dr. Bernard Raxlen explains in his book Lyme Disease: Medical Myopia and the Hidden Global Pandemic that he looks for “red flags” or “common themes,” listing two full pages of symptoms that are specific to tick-borne illnesses. These include including air hunger, purple/red streaks or scratches, constant sweating on one side of the body, psychogenic or emotionally driven seizures, loss of reading ability, and migrating pain, particularly in joints, muscles, and nerves.[4]

I spent two years treating EBV before seeing an LLMD and realizing I was only fighting half the battle. I know now to ask, what else could be going on? Am I treating all of my symptoms? Does my diagnosis speak to all of them? The patient who questioned me probably only read one of my articles that described my fatigue, and made a quick assumption that I have CFS. Had this person read more of articles describing my specific experiences with neurological Lyme disease, they may have drawn a different conclusion. Its important for patients and for doctors to get the full picture before drawing conclusions or making diagnoses. Lyme may be the great imitator, but it is not a catch-all diagnosis, and we must understand what differentiates it from other diseases.

[1]Gaito, Andrea, MD. “Clinical Evaluation and Treatment of Lyme Arthritis; An Autoimmune Perspective.” ILADS, 2012.

[2]Horowitz, Richard I., MD. Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease. New York: St. Martin’s Press, 2013 (29).

[3]Horowitz, 58.

[4]Horowitz, 33.

[5]Raxlen, Bernard, MD with Cashel, Allie. Lyme Disease: Medical Myopia and the Hidden Global Pandemic. London: Hammersmith Health Books, 2019 (26-7).


jennifer crystal_2Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at [email protected].

Lyme Isn’t a Choice

by Jennifer Crystal

Please don’t give in to denial and fear. If you think you might have a tick-borne disease and have been avoiding going to an LLMD, or if you have been diagnosed with one or more tick-borne illnesses and have yet to seek treatment— please rethink these decisions.

I once spoke with an acquaintance who had struggled with the standard Lyme disease symptomsfatigue, joint aches, neuropathy—for many years. She’d been to many infectious disease specialists, rheumatologists, endocrinologists and neurologists, and no one could figure out what was wrong. I asked if she’d ever been tested for Lyme disease. She shook her head and said, “Aren’t the tests unreliable anyway?”

“Yes,” I said, “the standard tests are only 50 percent reliable. But a Lyme Literate Medical Doctor (LLMD) can do more specialized tests and make a clinical diagnosis; that is, one not based solely on standard tests alone. It would be worth a visit just to see if your symptoms might come from from tick-borne disease.”The woman shook her head.

“Nah, I don’t want to have Lyme,” she said. “I don’t want to go through everything you did and have such extensive treatment.” This denial was because she knew I’d been bedridden for several years, and that it had taken a year of intravenous antibiotics to get me into remission. She also knew that while I had regained much of my health, I still had some limitations, because my three tick-borne co-infections (Lyme, babesia and ehrlichia) were chronic.

Aghast, I gaped at her. This woman was acting as if she could pick and choose which disease she’d prefer to be diagnosed with, the same way you might walk into a grocery store and say, “I don’t really feel like making asparagus—too much preparation. I’ll have carrots instead.” Alas, patients with the misfortune to have contracted  tick-borne disease don’t have that type of freedom.

In the same way a patient with cancer can’t decide they’d rather have shingles. Such irrational thinking really isn’t thinking at all. No one wants to go through intense treatment, but we do it with the hope of getting better. We do it because the alternative is denial, which will make us sicker. If this woman had Lyme and didn’t get a proper diagnosis and treatment, her symptoms were only going to get much, much worse. Pushing a problem under a rug doesn’t make it go away. It just creates a larger problem that still must eventually be addressed.

Now, one could argue that a Lyme diagnosis is less definitive than a cancer diagnosis, because of the faulty testing. But testing is getting more and more specialized, and a good LLMD can make an expert assessment as to whether or not someone is suffering from tick-borne disease. In my case, my clinical diagnosis was corroborated by CDC-positive testing for all three of my illnesses. I was unequivocally infected with Lyme, babesia, and ehrlichia.

Much to my disbelief, I had heard other patients with equally unequivocal diagnoses denounce their diagnosis because they didn’t want to deal with having such a serious disease. I know one fellow who tested positive for Lyme and said, “I don’t want to take such strong medication or make all the lifestyle changes you’ve had to make.” So that person continued to see a Lyme-illiterate doctor who gave him the answer he wanted to hear—the wrong ones. Yes, this doctor said the man’s symptoms could be from something other than Lyme. But the doctor has yet to figure out what that “something else” is. In the meantime my friend is twisting in the wind, uninformed and suffering. His symptoms of joint pain and headaches have only gotten worse, because his tick-borne infections continue to go untreated.

Alas, getting Lyme disease is not a choice. I did not choose for a tick to bite me. I did not choose to lose my capacity to work or care for myself. I did not choose to be bedridden.

I did choose to confront my health issues head-on. I did choose to push beyond my original diagnosis of chronic Epstein Barr virus, because I knew something else was also going on. The key word here is “also”. I did have Epstein-Barr. But I also had three tick-borne diseases, and if I hadn’t found a doctor to accurately diagnose and treat them, I’d still be suffering terribly.

Please don’t give in to denial and fear. If you think you might have a tick-borne disease and have been avoiding going to an LLMD, or if you have been diagnosed with one or more tick-borne illnesses and have yet to seek treatment— please rethink these decisions. The only way you will ever get better is to acknowledge the truth of what’s going on in your body, and do something about it. I’m sure glad I did!


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: 

[email protected]

diagnosed Lyme disease

I Just Got Diagnosed with Lyme Disease. What Should I Do?

Welcome to the school of Lyme. 6 tips for those newly diagnosed with Lyme disease.

 

by Jennifer Crystal

Every day, I receive emails from people who have recently been diagnosed with Lyme disease. As most of us do when we hear a new medical term or leave a doctor’s office, these people frantically search the web looking for information. Sometimes they come across one of my blog posts. Then they write with questions about treatment, with requests for finding a good doctor and with prayers that I will be able to offer them some hope. Most of all, they want to know: “What do I do to get better?”

Because I find myself offering the same responses to many such patients, I thought I would create a “School of Lyme For the Newly Diagnosed.” Consider this a brief survey course on tick-borne illness, open to anyone who wants to learn the basics of what to do when you get (or suspect) a Lyme diagnosis.

Lesson 1: It’s Lyme, not Lyme’s!

It’s important to know the correct name of your disease! Many people mistakenly call it Lyme’s disease, assuming it was discovered by a Dr. Lyme. In fact, Lyme is named for the town in which it was first detected: Lyme, Connecticut. As for the names of co-infections, those are not as simple, but should still be part of your working vocabulary; we’ll get to those in Lesson 5.

Lesson 2: All cases are different

Everyone’s looking for a one-size-fits-all treatment protocol. Unfortunately, that doesn’t exist, and here’s why: Lyme bacteria, called spirochetes, impact every victim differently. It depends how quickly the infection was caught and diagnosed; how far it’s spread, and to where. The bacteria can affect different organs, muscles, bones and cells in different patients. It can cross the blood-brain barrier and enter the central nervous system. Moreover, there may be co-infections present—the list goes on and on. A Lyme doctor can see a thousand patients and use a thousand different protocols. Telling you what antibiotics I took won’t help you; you need to work with your doctor to figure out the best combination for you.

Lesson 3: Find an LLMD

An LLMD is a Lyme Literate Medical Doctor. This is a physician who has trained with ILADS (The International Lyme and Associated Diseases Society). Some practitioners claiming to be Lyme literate may not be versed in all tick-borne disease. The best way to know you are getting good treatment is to make sure your doctor is ILADS-trained. You can find an ILADS-trained physician in your area through Global Lyme Alliance, by clicking on GLA.org/find.

Lesson 4: Get tested for co-infections

Unfortunately, ticks don’t only carry Lyme disease. Many of them harbor what are known as co-infections: other tick-borne diseases besides Lyme. The most common are babesiosis, ehrlichiosis, anaplasmosis, and bartonella, but there are many others. It’s critical that you get tested for co-infections along with Lyme disease. If you are receiving treatment for Lyme and haven’t been tested for other tick-borne infections, you may be fighting only half the battle.

Lesson 5: Take probiotics

Antibiotics kill spirochetes, but they also kill the good bacteria in your gut, which can cause a yeast infection. To combat this, take probiotics (available at any pharmacy or health food store). Important: make sure you take the probiotics at least two hours before or after you take the antibiotics; if you take them too close together, the antibiotics will kill the probiotics.

Lesson 6: Don’t panic

The information available at our fingertips in this internet age is a double-edged sword. You may read stories that terrify you. Remember, every case of Lyme disease is different. If you catch tick-borne illnesses and treat them immediately, chances are you will not suffer as long those who have been sick for many years. Don’t let my story or those of other chronically ill patients frighten you. Do let these stories offer you hope, however, especially if you have been sick for a long time. I am living proof that even the worst cases of tick-borne illness can eventually be wrestled into remission. I am living proof that long-term treatment works. I am living proof that it’s a long road between being bedridden and skiing, but it can be traveled.

Most importantly, know that you are not alone in this fight. There are many of us battling tick-borne diseases right alongside you. We feel your pain. We validate your suffering. And we know that it can get better. There is hope!

 


jennifer crystal

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: 

[email protected]

lyme literate doctor

The Dangers of Playing Doctor

by Jennifer Crystal

Being a Lyme-literate patient doesn’t mean you’re a Lyme-literate doctor. It’s important to know the difference.

 

Remember the old TV ad where the actor says, “I’m not a doctor, but I sometimes play one on TV”? Well, I’m not a doctor either, but sometimes I feel like I play one in real life.

I’ve become so well-versed in tick-borne diseases that I can distinguish between symptoms of Lyme and their co-infections; explain in scientific detail the issues with testing; talk biofilms and inflammatory cytokines and Herxheimer reactions. I have explained to actual doctors what it means when Lyme crosses the blood-brain barrier, why spirochetes evade antibiotics and how tick-borne illnesses affect acute infections. I know which blood tests I need to be ordered every month, and I can interpret the results.

I am Lyme-literate. But I am not a doctor. It’s important to remember the difference.

Anyone who has suffered from an illness for an extended period of time becomes knowledgeable about it. It’s a natural consequence of spending so much time in doctor’s offices and in bed. You get to know your symptoms—and the reasons behind them—because you’re living them first-hand. I consider this a positive effect of my illnesses, because I’m an informed healthcare consumer who can work with my doctors to make good decisions for my health. Moreover, I can help spread Lyme literacy by teaching others what I’ve learned.

The downside to this wisdom, though, is that we can start to view everything through the lens of our particular illness. Whenever someone tells me they have a rash, or flu-like symptoms, or idiopathic headaches, I immediately wonder, Could they have Lyme? We Lyme patients all know someone, either personally or in the public eye, who presents with what seem like Lyme symptoms, and we are sometimes too quick to share our opinion of the situation.

These people may very well have Lyme or some other tick-borne infection. I’ve had friends show me photos of bullseye rashes, or tell me stories of symptoms, and I’ve been able to point them to a Lyme-Literate Medical Doctor (LLMD) who has accurately diagnosed them with the disease I could only, as a non-doctor, suspect they had. It’s crucial for me to remember though that my role in that patient’s journey is simply to inform and where possible guide. Only an LLMD can make an actual diagnosis.

When one starts making blanket statements like “Oh you definitely have Lyme” or “That person doesn’t have Parkinson’s; it’s actually Lyme” one runs the risk of feeding into Lyme-related frenzy.  Someone who is new to Lyme recently asked whether LLMDs also feed that frenzy.

“Don’t they all just say everything is Lyme?” she asked me.

Well, no, they do not. A good LLMD will look at both test results and a clinical evaluation to assess whether a person is suffering from tick-borne illnesses or from something else, be it Parkinson’s, multiple sclerosis, or possibly an autoimmune disorder. A knowledgeable LLMD remembers his or her Hippocratic Oath: to admit when they don’t know, and to do no harm.

Lyme patients must do the same. It’s imperative that we help spread Lyme literacy. But we must tread carefully between offering educated advice and playing a role we’re not qualified to fill. Our illnesses are real. Let’s therefore stay true to our real-life duty as Lyme literate citizens: to help educate through our insight and experience, without trying to play the LLMD.


jennifer crystalOpinions 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 [email protected]

The Pursuit of Answers: What My Doctors Said

by Susan Pogorzelski
#MyLymeLife

What was the path to your Lyme diagnosis?

 

I’m in middle school the first time it happens. I’m 13, I think. Possibly younger. We’ve just returned from a school camping trip where I’d proudly proclaimed I was a nature girl after climbing up muddy embankments and hiking along trails lined with maple trees. I fall ill quickly with a fatigue that won’t abate and a fever that sends me directly to the doctor. The diagnosis: mononucleosis.

“I don’t understand,” I say to my mom. “Is this really what mono’s supposed to feel like?”

I get the nagging feeling that something isn’t right. But I’m 13. Possibly younger. What do I know?

* * *

I’m sitting in the living room with my parents a year later, watching a comedy rerun on TV. My chest feels inexplicably heavy. I inhale slowly, but my breathing feels too shallow. I take another breath, then another, and one more. It’s not enough.

My mom glances over at me and asks what’s wrong, but I shake my head, unable to speak. I’m sucking in mouthfuls of air, but it’s like the more I try to breathe, the shallower my breath becomes. My parents are alarmed. My mom instructs me to blow into a paper bag, but the air tastes tainted. I need fresh air, I tell them, but even outside, there doesn’t seem to be enough oxygen in the world. I’m weak. I’m pale. They usher me into the car and drive me to the ER. Tests are run on my heart and my lungs. Finally a doctor comes in to see me.

“You had a panic attack,” she says matter-of-factly. She makes a note of anxiety and depression in my chart and instructs me to follow up with my primary care physician.

It’s a diagnosis that will haunt me for years.

* * *

I’m a senior in high school, and although my original breathing issues abated within months, the panic attacks are real now. Dread rests in the pit of my stomach while an irrational fear runs through my body. I’m afraid to leave my house, afraid to leave my family, afraid, afraid, afraid…

It’s five in the morning, and I hear my dad getting ready to leave for work. In the darkness of the early hour, I’m gripped by a fear for which there are no words. I jump out of bed and race down the hall in uncontrollable sobs, begging him not to go to work, like I’m still a child afraid of being separated for even a few minutes.

“What’s wrong?” my parents ask, but I don’t know. I don’t know… All I know is fear has taken hold of me and won’t let go.

I spend my senior year trying to build up the courage to go to school. Once I’m there, I’m fine—happy and successful, even, with good grades, great friends, and leadership roles. But it’s the mornings that are the worst. I make it to the end of the driveway before I find myself running back inside. I drive a few blocks out of my neighborhood before I have to turn back around. I have a special excuse from class so I can sit in the courtyard and calm myself in the fresh air when that familiar fear grips me, and once or twice, I think about running all the way home instead.

It’s like something inside of me is telling me that home is the safest place there is, and if I’m home, then maybe I can cocoon my family there, too.

“Anxiety attacks,” my doctor says.

Now I’m seeing a psychiatrist who is talking about how getting ready to leave home for college and all the change that comes with growing up is triggering this disorder.

It makes sense. So I believe him.

* * *

I’m 24 and being scolded at my job for needing to take too many sick days.

“Well, what did the doctor say?” my colleague asks.

“Just another virus,” I say.

* * *

I’m 28 years old and in tears from the pain that’s shooting across my upper abdomen.

“It’s just a virus,” my general practitioner says, echoing an old refrain.

At my insistence, we schedule a never-ending parade of tests that I wouldn’t want if I had a choice and they don’t think I need except for the fact that the pain is persisting and only getting worse. I’m groggy after an endoscopy. My gastroenterologist proclaims nothing showed up as irregular on the test. Then he pats me on the shoulder and smiles.

“Just a sensitive stomach,” he says.

A few months later, they’re removing an infected gallbladder.

* * *

I’m 29 years old and dying. I know this. My parents know this. It’s been four months since my gallbladder surgery, and I’m so weak, I can’t walk. My brain feels so broken, I can barely talk. Burning sensations shoot through my legs. Words don’t make sense, and I can’t recognize my best friend even when she’s standing right in front of me. My face is ashen. The light in my eyes has gone out. I’m a shell of my former self.

My parents are determined to help me. We go to one of the top teaching hospitals in the country.

“Migraines and a vitamin deficiency,” the doctor says when my scans come back clear.

I cry.

I dry my tears.

I resolve to save my own life.

* * *

I’m sitting in a doctor’s office 200 miles from home. It’s six months after my gallbladder surgery and two months since my last hospital visit. This is my final hope.

I think about all the research I’ve done—all the studies I’ve read, all the patient testimonies I’ve reviewed. My suspicions—the very reason I’m here—is the only thing that explains the years and years of symptoms and this sudden decline in health. I see the look in my parents’ eyes, see the question that’s hidden there as my doctor reviews my history and labs—will he save my life?

“You have Lyme disease,” he confirms. “Without a doubt.”

I begin to cry, relief flooding through me.

Yes, he will.

* * *

I’m 33 years old today. In a few short months, I’ll be 34. I get to see 34 because after all these years and all this suffering, someone took the time to learn. They took the time to listen. For the first time, I’m not dismissed with a wave of the hand or a pat on the shoulder. For the first time, someone is looking at me as a human being instead of a compilation of conflicting symptoms.

I’m here because we fought to save my life together.

 * * *

Sometimes I look back on all those years and doctors, and I’m stunned by the flippancy with which I was treated. Yet I know even my experiences are tame in comparison to what I’ve heard from other Lyme patients. I remember a time when yet another doctor scolded me for looking up my symptoms on the internet, for not trusting him to do his job. But it was only by trusting myself that there was something more going on here, that there was some complex piece to this health puzzle that had yet to be resolved, that I ended up saving my life.

Over the years, I’ve learned to become my own health advocate, to speak up when a diagnosis or treatment doesn’t seem right. I’m formidable. I ask question after question and demand the reply. As Lyme patients, we don’t have a choice. While the medical community is slowly learning thanks to increased awareness, many patients continue to fall through the cracks, misdiagnosed with Band-Aids placed on aggravating symptoms, concerns dismissed with a flippant wave of the hand or those few damning words: “It’s just a virus.”

There’s one thing I know for certain now, after all this time: We are worthy of answers.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

What’s Luck Got to Do with Lyme Disease?

by Jennifer Crystal

For many Lyme disease patients, luck starts with getting an accurate diagnosis.

 

Whenever someone hears my story and says, “Wow, you’ve really been through the wringer,” I respond, “Yes, it was a long haul, but I feel really lucky.”

Eight years of misdiagnosis, three years in bed, one year on intravenous antibiotics, and countless missed life events doesn’t seem so lucky, but that’s not how I look at it now. I’m lucky that I was diagnosed at all. I’m lucky that I fell in the hands of a good Lyme-literate doctor (LLMD) and got treatment. I’m lucky that I lived in a state where insurance covered that treatment.

So much of Lyme disease is just luck, good and bad.

My medical trajectory started with the bad luck of being bitten by a tick. I was in the back woods of Maine. I wasn’t focused on prevention and wasn’t wearing bug repellent, and I definitely didn’t know to check for ticks. These are factors I could have better controlled, which might have kept that original tick away from me. Then again, I have lots of friends who spent similar summers in those woods, who were similarly careless, who were never bitten by a tick. So even if I had been more careful, my being bitten may have just been bad luck. The fact that my tick also delivered three co-infections in addition to Lyme was even worse luck.

Recognizing the role luck plays in Lyme disease lets us off the hook a little. I’m not saying we shouldn’t be vigilant; anyone who spends time outdoors must be. We need to take the best care of ourselves we can. We need to follow the protocols our doctors give us. When those treatments don’t work, or when we aren’t comfortable with our doctors, we need to do something about it: we need to find new physicians, or work with our practitioners to try different mixtures of medications. We need to figure out what lifestyle changes we can implement and adjunct therapies we can try to best improve our health. We need to do everything in our power to get an accurate diagnosis, to get proper treatment, and to fight for what we need.

And then we have to let go and realize, like to stoics, that the rest of it is out of our control. The rest of it is up to luck.

Patients who get an early accurate diagnosis are lucky. Patients who respond well to treatment are lucky. But all of us have some bad luck along the way. Some of the antibiotics I tried didn’t work, or had side effects I couldn’t tolerate. One made me so nauseous I spent a week running to the bathroom. Another caused gallstones so big that I had to have emergency surgery. It took a long time to find the right “cocktail” of medications, and even then, I had bad patches. I still have them, especially when I change a medication or hit a stressful period in my life.

But still, I am getting better. So in the larger picture, I consider myself lucky.

The most important thing is to get an accurate diagnosis, and the best way to do that is to see an LLMD. Patients write to me all the time with questions and fears, wondering if they’ll ever get better. If I read that they’re already seeing a Lyme specialist I breathe a sigh of relief. I know they are in good hands, and the best I can do is wish them good luck on their journey.

If you need help finding an LLMD, please click here. Then know that no matter how hard the road has been, no matter how hard it might be, luck is likely on your side.


jennifer-crystalOpinions 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 [email protected]

How to Be Your Own Health Detective

by Kerry J. Heckman
#MyLymeLife

Getting an accurate Lyme diagnosis can take years. With poor diagnostic tools and limited support patients are often forced to be their own health detectives. Here are six tips to help in the process.

 

The test result email popped into my inbox. I was driving and couldn’t look until I was stopped at a red light. This was it. The final clue in a seemingly never ending mystery. The diagnosis I’d been waiting almost two years to get. Two years of crippling health anxiety, and a slow steady decline, all resting on one simple blood test.

Many people who are eventually diagnosed with Lyme disease spent years leading up to it searching for the right diagnosis. Because of poor diagnostic tools, we’ve had to learn to be our own health detectives.

My journey started almost three years ago.I’d been ill for many years prior, but doctors assumed all my symptoms related to an autoimmune condition, Grave’s disease. Then, in May of 2014, my right leg started to feel “heavy” and was aching. I looked down and noticed it had blown up like a balloon. I ended up in the ER. At first, the doctors took it seriously, because they thought it was a blood clot. After the test came back negative, I was quickly discharged with no answers.

I went to my primary care doctor and she told me to wait a month and see how I felt. I immediately found a new doctor and he told me that unless the swelling was more than two inches different from the other leg I should simply ignore it. Ignore it? I was just supposed to walk around with a swollen leg for the rest of my life? No tests were ordered, no follow-up appointments were scheduled, so I moved on to another doctor, and another, and another.

Like a detective on an important case, looking up symptoms on the internet became my full-time job. I’d get lost down a Google rabbit hole for hours on end. My husband would practically have to pry my fingers from the keyboard. Every time I discovered a new lead I would follow it as far as it would take me, usually to another annoyed doctor, who’d send me away with an exasperated look. This continued for six months. Then I developed a new strange symptom a stabbing pain in my side. Again I went to the emergency room. This time I was admitted after a MRI revealed what looked to be an infection in my spine. It took the doctors five days to determine the infection wasn’t spreading rapidly enough to cause immediate concern. I was discharged again with nothing but another piece of paper with the diagnosis left blank.

From there I was passed between a rheumatologist and infectious disease doctor for another six months. When I went to see the rheumatologist, he said it was an infection; when I went to see the infectious disease doctor he said it was rheumatological.

But I didn’t give up. I found an integrative medicine doctor who was willing to think outside the box. She ran some preliminary tests for Lyme disease, and when they came back suspect, she referred me to a Lyme-literate medical doctor.

Those two years were some of the most difficult in my life, but I had to stay on the case. Here’s some advice on how to keep moving forward even when the puzzle seems impossible to solve.

How to Be Your Own Health Detective:

  1. Start thinking like one

From the very first symptom, everything is a clue. Keep an ongoing list of every symptom you experience. Even if it doesn’t seem like an important one, write it down. Keep a folder of all your test results. Compare and contrast the results over time. You never know what will end up being the missing link.

  1. Ask the right questions

Make a list of all your doctors. When a question pops into your mind, write it down under the heading of the best doctor to answer that question. By the time of your next appointment, you will a have a thoughtful list of questions to ask.

  1. Be confident in your symptoms

Before I had a diagnosis, I found that many of my symptoms were minimized or ignored by doctors. Some of these symptoms seemed small on the surface, but ended up being the most important clues. Don’t allow a doctor to tell you a symptom isn’t real,  is all in your head.

  1. Set boundaries when using the internet

Google and Internet forums are a good tool for health detectives. The problem is it can become an enormous waste of time and energy. Some good boundaries to set are to spend no more than 15 minutes a day researching symptoms or asking questions on forums. Make sure you verify everything you read with a trusted doctor; there is a lot of dangerous misinformation on the internet.

  1. Talk about your illness

When you talk about your symptoms with other people, sometimes they have good input. For example, back when my leg first became swollen, a friend of my mother suspected an infection. This was something none of the doctors had mentioned, but I kept it the thought in the back of my mind. It turned out she was right.

  1. Never, ever, ever give up

The worst thing you can do for your health is to give up. Sure, you’ll hit brick walls, but you’ll have to learn to break through them. Nothing is more important than your health, so you have to keep exploring until you feel satisfied with your care. If you can afford it, get a second opinion (and a third, and a fourth). Determine how far it is reasonable for you to travel and how much it is reasonable for you to pay, and then go to the best doctor you can find who fits within those parameters.

I was stopped by that red light for just long enough to open the email. I was scared to read it. What if it’s just another negative test to add to the list? But it was “positive.” After two long years of no diagnosis and countless doctors, I had my answer. I had Lyme disease. When you receive a diagnosis it can be a strange mixed moment of emotions. You are devastated to have the illness naturally, but even more so you are grateful to finally know what it is. My detective work paid off.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

What to Do When You Get Bad News About Your Health

by Kerry J. Heckman
#MyLymeLife

Getting bad news is hard for anyone. For people with a chronic illness, like Lyme disease, it can happen often. Here are 8 tips to help you manage the bad news.

 

I went through three biopsies of my spine trying to find a reason why my MRI was so drastically abnormal. All three biopsies were inconclusive. This process is not for the faint of heart. It consists of fasting for an entire day, getting an IV, laying on your stomach in a CT machine, while the doctor sticks a large needle in a precise location within my back. During my first two biopsies, they took a sample of my bone, which I could feel them chip away. The sedative and twilight anesthesia helped, but caused me to throw up about an hour after I finished the procedure.

Each time I prayed for an answer to my long-awaited question, and each time the lack of a diagnosis stung a little more.

For people with chronic illnesses the medical tests are non-stop. My one good vein has so much scar tissue it’s hard to get blood from it anymore. Sometimes those test results are positive and hopeful, but many times they aren’t. The bottom line is when you get news about your health that isn’t what you wanted to hear, it’s very hard to cope with; and for people with chronic illness, it happens over and over again.

Here is some advice on how to respond:

1. Cry

You better believe I’ve cried a lot after a phone call from a doctor or an email from a lab. It’s okay to be disappointed, sad, and scared when you get bad news. Let the river of tears flow. Life is not always kind.

2. Talk to someone

When the news is bad, it can be helpful to talk to someone. This person can be your partner, parent, best friend, or a professional. Pretending you aren’t hurting and putting on a brave face won’t serve you in the long run.

3. Don’t let the test results define you

Test results are numbers on a page or the label of a diagnosis, but often these things are changeable, not fixed. I know one day my inflammatory markers will go down and the Lyme disease will be in remission. When I get bad news, I know it’s a measure of my current state and it’s only temporary.

4. Get a second opinion

If I hadn’t gotten a second opinion, or a third, or a fourth, I never would have gotten a correct diagnosis of Lyme disease. It’s also important to remember there is a time to gather new information and a time to contemplate what you know; try to find a balance.

5. Write down an action plan

When another spot of inflammation showed up on my CT scan, I was devastated and overwhelmed by the number of follow up tests and conversations with doctors that needed to take place. I was worried if I didn’t get it all done instantly something would get missed. I paused a moment and took the time to make a list of everything that needed to get done. Then, I put each item in order of importance. It helped to take all the anxious noise in my brain and lay it out in a strategic plan.

6. One step at a time

After you have developed your action plan, take one step at a time. You might not get all the calls made in one day. There may be tests that you have to be schedule far in advance or may take weeks for the results to come back. As long as you are marching toward the goal, don’t push yourself too hard.

7. Ask for help

Let’s face it, brain fog doesn’t necessarily lend itself to creating and following through on a detailed health plan. Ask your doctor, partner, or friend to talk it through with you. Maybe they have insights that you didn’t consider.

8. Look for a reason

I don’t necessarily believe everything happens for a reason. But my personal philosophy is even if there isn’t a reason, it still happened, so you have to make one.

When I had my inconclusive biopsy, a good friend said: maybe now isn’t the right time to find an answer. She was right. If I’d received a negative biopsy I might have given up the fight for answers, but since I had no answer I sought out a new doctor who ultimately led me to my Lyme diagnosis.

Each test, whether good, bad, or inconclusive is another clue along the path to recovery.

My mom recently had an abnormal mammogram and had to go through a biopsy of her own. With our stomachs tied in knots, my entire family waited for the results. We breathed a collective sigh of relief when the biopsy came back negative. When you get bad news about your health it’s important to remember that sometimes there is good news. I’ve had my share of positive test results. They’re just overshadowed by the negatives ones. Illness is a journey of ups and downs, for every dark of night there is the light of day. Waiting for the sun to come up is hard, but it’s there hidden just behind the horizon, ready to rise.


Opinions expressed by contributors are their own.

kerry-j-heckman-profile-picture_thumbnailKerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

A Naval Aviator’s Experience with Lyme Disease

by Luke D. Miller
#MyLymeLife

When I was 21, I earned my bachelor’s degree and accepted a commission as a Marine Officer in Quantico, Virginia.  Serving my country was my only dream. I spent many days and nights training in the Virginia wilderness. However, after returning from a week-long training exercise, I pulled an embedded tick off my abdomen. Unbeknownst to me, that seemingly harmless tick bite would eventually end my career. Immediately after the bite, I came down with a severe case of bronchitis and widespread joint pain. I went to the hospital and was prescribed antibiotics and anti-inflammatories. About a month past and I recovered, forgetting about the tick bite. As I progressed through my career, which took me to flight school, I began experiencing short-term memory problems, loss of concentration, and extreme exhaustion. I was working 12-18 hour days, so I blamed it on stress and the difficult curriculum. I medicated with coffee. I successfully graduated from flight school, with honors, and moved on to my next duty station: Whidbey Island, Washington.

While stationed at Whidbey Island my health deteriorated to the point where I was unsafe to fly, relied on my car’s GPS to find my way home, and faced a potential death sentence – a provisional diagnosis of ALS. Unwilling to accept that diagnosis, I sought out multiple opinions and one finally made sense, Lyme disease.

tick bite ended career

Within five years, at the age of 26, my health deteriorated to the point where I was disabled and unable to work. Subsequently, I was medically retired from the military and survived off of military, veterans, and Social Security benefits. Physically, mentally, and emotionally broken, I was lost. How did I become disabled? To the average person I appeared normal, but I was fighting an internal war with Lyme disease.

Now, at the age of 33, I am in my third year of law school. In five months I will graduate from Willamette University College of Law and set out in my new career as an attorney. I wouldn’t wish my life on anyone, but also one I would not change if I could. Through my struggles I was blessed to meet and marry my best friend. We have two beautiful children: our four-year-old son, Isaiah, and one-year-old daughter, Kalani. Raising our children isn’t easy for my wife, because much of the family responsibility falls on her because due to my physical limitations.

After eight years of continued aggressive treatment with a Lyme-literate doctor and weekly chiropractic care, I still struggle but my symptoms are manageable. I suffer from widespread pain and neuropathy, fatigue, concentration and short-term memory issues, but those symptoms are not always present. I have “good days” and those good days are increasing in frequency as symptoms grow milder. While I may not be the same person I was (and likely will never be), I am back in control of my life. I am happy and flourishing.

lyme disease could have broken me

Lyme disease could have broken me, but I refused to go down without a fight. Ironically, I became infected with Lyme disease because of my military service, but both my military service and Lyme disease have lead to unparalleled opportunities. Our family now operates a successful real estate business, which came about in part out of necessity, and I had the pleasure of working as a law clerk for the Oregon Department of Justice, Oregon Legislature, Veterans Legal Institute, two private law firms, and Willamette University College of Law’s Veterans Legal Clinic. My personal battle with Lyme disease reinforced my desire to fight for others. As I approach graduation, I cannot help but be grateful for where I am.

Don’t let Lyme disease silence or discourage you. Use it as a springboard to propel you to where you ultimately should be. Minus the cockpit, I am serving others as I always intended, but in a new way. Lyme disease seemingly ruined my life and career, but in the long run it did not; it challenged me and forced me to shift course. Rather than flying and dropping bombs, I take the fight to the “enemy” with words through court pleadings. I utilize our judicial system to help others and hopefully prevent them from facing a horrific reality as I did. However, if they do, I am here to help them navigate those formidable waters.

Lyme disease recovery is a harsh reality. You are sick, unable to think straight, and feel backed into a corner. There are few people to help you so you go it alone. However, if you can survive the first few years, you regain yourself. You realize, as you assist others, you can relate to those you help, because they occupy the same confused and scared position you stood in earlier. Know yourself, your limitations, and then you can begin to bear the burden of others.


Opinions expressed by contributors are their own.

luke-miller_blog-writerLuke D. Miller lives in Oregon with his wife and two children. He is about to embark on his new career as an attorney.

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 [email protected]

Dream Like New

by Susan Pogorzelski
#MyLymeLife

I used to revel in the thought of living in solitude like Thoreau at Walden Pond. A cabin nestled between pines, a farm sprawling across a dozen acres, a cottage by the beach—I imagined these places bringing peace and comfort and a quietude that is rare these days, among the go-go-go rush for something—anything—so long as it looks like living.

But certain kinds of silence breed loneliness, and loneliness will drive you mad.

Right now, my life is divided into before and after, then and now. Before I was sick and after. Then, when I fought this disease for three years, and now, when it’s already been a full year since I relapsed after only a few months in remission. Before, I got through it with the help of family and friends and my pets, a job to return to, and a dream to pursue. Now, while I’m still so grateful to have my family, my friends, and the unwavering companionship of my dogs—please don’t ever mistake these thoughts for ingratitude—I’m having trouble coping with the isolation and loneliness that stems from living with Lyme disease.

I can’t do much more right now than bide my time until the fatigue sets back in and I have to close my eyes. When I write, I’m able to put down a few sentences at a time before the words get muddled in my mind and the fog becomes too thick. Short walks let me bask in the fading summer sun, but it isn’t long before the pain in my legs make me grow weak, and I have to rest again.

I hear kids’ sneakers slapping against the pavement as they run up and down the alleyway behind my house, hear women chatting with giggles in their voices as they power-walk past my open windows, hear my neighbors on the porch in a symphonic blend of togetherness, and I want to be a part of it—I want to be a part of the world. Outside life slips through the cracks beneath the door, and it only takes a second before I realize how lonely I am within.

Social media gives me an outlet—a chance to catch up and be with friends when I’m limited in where I can go—but I see pictures of vacations and posts about projects they’re working on and where they’re going, and I want to cry.

Because I can’t go anywhere but here, and here doesn’t feel like anywhere.

But I’m too numb to cry, so I let the envy fester beneath the surface and mix that with self-loathing for not living a life that’s supposed to be precious in the first place and add it to the guilt of being too sick to be a part of anything. I become a cocktail of loneliness while the darkness wraps a blanket around me like it’s some kind of comfort, whispering, there, there, stay here with me.

I don’t know what I’m supposed to be doing. Everyone says I should only concentrate on getting better right now—it’s the line I fed myself to assuage the guilt of not being able to work—but it doesn’t feel like enough.

cant-go-anywhere

I’ve spent the majority of my life ill, and still I pushed through it. I went to college and traveled and worked so hard to create a future for myself, to pursue a dream, to build a career, and to define my own success. When I was finally diagnosed, all through treatment I relied on the knowledge that one day I would be better and could live my life at full-throttle. Everything I had worked for, I believed, could be realized when I was healthy again. It’s what kept me going—knowing that hard work pays off.

That was then. Now, this relapse has flung me back into the darkness of this illness, where everything I worked for seems to have slipped away once more. I want to keep fighting. I want to pick up the pieces and put them back together again, to keep working harder, but I’m so tired.

I’m so tired.

I don’t know what I should be working for anymore. Every day, I spend an hour between naps plugging away at my writing because I would drown without a place to put these words. Every day, I work at creating some semblance of a future for myself when I don’t know if the dream is worth the fight and the fatigue. Most days, I question what the dream even is anymore, wondering if even that has faded.

I can’t bear my days like this. This idleness means I’m only existing when I want to be out there, living. But I remain limited, trapped, wrapped up in this illness and the mix of emotions that accompanies it, even as I continue to get better. Even as my spirit grows stronger than it’s ever been before.

I don’t know what my future has in store now. For the first time in my life, there is no plan. What I could once envision so clearly is now an echo of the life I wanted. But I’ll keep waiting. I’ll keep fighting. I’ll put those other dreams to rest for now and concentrate on the only one that matters:

To live.


 

Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.