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A Mother, A Supporter, A Lyme Warrior: Stephanie Ercegovic

Introducing GLA Greenwich Gala Co-Chairs: Part 1 of Series

 

Three years ago, Stephanie Ercegovic (pictured with husband, Brian Foster) began a medical journey that took her from one doctor’s office to the next as she sought treatments for the mysterious illness affecting her 13-year old daughter.

Her daughter had suddenly gone from being healthy, “super-athletic and full of energy” to suffering from an alarming number of problems that included a painfully inflamed shoulder, unremitting sleep difficulties, severe anxiety, and digestive issues. Ercegovic and her husband consulted doctors in Connecticut and New York but none were able to determine what was wrong.

It goes without saying that when a child is chronically ill, the whole family feels the pain. “It’s been a nightmare for my daughter,” said Ercegovic, a Westport, Connecticut resident, “a nightmare for everyone.”

Living in Connecticut where Lyme disease is endemic, you might wonder why doctors did not immediately suspect that the teen’s problems were caused by the tick-borne illness. As it turned out, Ercegovic’s daughter was tested twice for Lyme, but after both tests were negative—even though such tests are only 50% accurate—doctors ruled it out. As a result, she was shuffled off to numerous specialists, while the Lyme infection became more disseminated throughout her body and more difficult to treat.

“We went from place to place, searching for answers,” said Ercegovic, president of Discovery Capital Management, a South Norwalk-based hedge fund. “She had MRIs and nine months of rehab for her shoulder with two different orthopedists. The second doctor finally concluded that they couldn’t find anything wrong with her and it must be inflamed since her shoulder was ‘hot to touch’ and she should not carry anything more than five pounds. We visited ear, nose and throat specialists; pediatricians; and allergists as her body was developing new and significant food allergies every two to three months with no known cause.”

Fortunately, an answer came after Ercegovic watched a close family friend—Robyn Carpenter, who last year served as a co-chair of Global Lyme Alliance’s (GLA) Greenwich Gala—go from being “healthy and active to having her knee swell up massively and being unable to walk.”

At one point Carpenter was being treated for rheumatoid arthritis and she was told she even needed surgery, only to finally consult with a Lyme-literate doctor. He helped her navigate the path from illness to wellness by correctly diagnosing her with Lyme. As they saw Carpenter steadily improve after four months of care, Ercegovic’s husband wondered if his daughter might actually have the tick-borne illness. They met with Carpenter’s doctor and soon learned their child not only had Lyme, but was also suffering from a tick-borne co-infection, Bartonella, which can cause troubling neurological symptoms.

greenwich gala 2018
GLA CEO Scott Santarella with Greenwich Gala Co-Chairs Sonya Rolin and Stephanie Ercegovic (Co-Chair Astrid Womble not pictured)

Today, after being treated for a year, her 16 1/2 year old daughter is much better, but she can no longer tolerate antibiotics and her symptoms linger. Ercegovic, a Lyme Warrior if there ever was one, still searches for treatments that will help her child.“I’m a huge advocate for doing whatever I can,” she says. Taking a moment to reflect, Ercegovic says childhood should be a time of joy and exploration, but that “this disease has literally destroyed my child’s childhood.” The biggest issue that remains for her daughter, she says, is ongoing sleep problems that leave the teen exhausted, fatigue draining every ounce of energy from her body and making if difficult for her to stay focused, study, or get organized.

To make matters worse for Ercegovic, as she learned more about Lyme’s effects, her husband realized that he had Lyme, which was previously diagnosed as “arthritis in his hands and hips” and he too is undergoing treatment. Then last summer, she relived the nightmare of her older daughter’s Lyme when her younger child went for her annual pediatric physical and the pediatrician found a “red oval” rash on her back. “I found myself saying ‘Oh my god, oh my god. It’s a tick bite!,” Ercegovic recalls. “I was freaking out!” Recognizing that chances were good it was Lyme, she was taken aback when the pediatrician questioned whether it really was the tick-borne disease since it wasn’t the exact shape of a bulls-eye, the tell-tale sign of the disease which only manifests in some cases. “We left that office, got in to see the Lyme doctor the next morning and started treatment the same day, ” Ercegovic says.

Over three years, Ercegovic has had a crash course in what so many Lyme sufferers endure. She has seen how difficult it is to get an accurate diagnosis and find effective treatments. She has watched her teenage daughter suffer from an illness and its co-infections that traumatize the mind and spirit. Like others, her daughter must struggle against the invisible enemy inside of her. “My experience has been eye-opening,” she says. “I used to think that if you were diagnosed with Lyme, all you needed to do was take antibiotics and you would be fine. I didn’t know that spirochetes can hide in cells and even have a neurological component. It was all new to me.”

Her new-found awareness has made her determined to speak out and help others. Not only is she one of the Co-Chairs of GLA’s 2018 Greenwich Gala being held next month, but she says she plans to remain actively involved in GLA. “I’ve learned more from the mothers in this organization—what they’re doing and not doing to help their children—that it’s been amazing.”

Ercegovic says she is particularly eager to help alarmed mothers who search for answers when their children develop symptoms that doctors can’t explain. The first thing she tells a parent with a child who isn’t acting normally is to look for Lyme. “I tell them this is a real disease and they have no idea the damage it can cause,” she says.  I also tell them to find a doctor who knows Lyme. Think of it this way: If you have breast cancer, you aren’t going to go to a GP. You’re going to go to an oncologist, a doctor who specializes in cancer.  The same thing goes for Lyme disease. If you suspect Lyme, you need to see a doctor who deals exclusively with Lyme and tick-borne diseases.” For help in finding a Lyme-literate health provider, go GLA.org.

Ercegovic is looking forward to next month’s Gala and says she hopes it raises significant funds for researchers to continue their work of developing a highly accurate diagnostic test and better treatments. “Research is the key,” she said. “I’m hoping that research focused on detection and treatment will make a difference for other people and show them there is real hope.”

The Greenwich Gala is a major fundraising event for GLA. It will be held Saturday, May 12, 2018 from 6:30 p.m. until midnight and features a cocktail reception, dinner, dancing and both a live and silent auction. To purchase tables or tickets, please visit GLA.org/2018CTGALA or call 917-242-1817.

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Here are her answers to questions she has recently received. Do you have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com.

Q. You once mentioned that a scan helped doctors to learn that you weren’t getting enough oxygen to the left side of your brain. What type of scan was it? And how did doctors know the poor oxygenation was caused by Babesia and not by another tick- borne illness?

A. I have had both MRIs and SPECT scans. It was the SPECT scan that allowed my doctor to specifically see that the left side of my brain was not getting enough oxygen. That SPECT scan was done 11 years ago; you may want to talk to your doctor to see if that is still the most accurate scan you can get.

As I described in my Air Hunger post, Babesia is a parasite that feeds on the oxygen in the red blood cells, depriving the patient of much-needed oxygen. In my case, my doctor knew the infection had flared up again because of the scan. I was also having symptoms of babesia including air hunger, post-exertional fatigue, and hypoglycemia. It’s important that you find a Lyme Literate Medical Doctor (LLMD) who can accurately diagnose and treat you, and who will know your case if and when you relapse.

Q. How long does a Herxheimer reaction last, and is there anything that will help speed up the process or lessen its effects?

A. A Jarish-Herxheimer reaction commonly referred to as a “Herx”, is when bacteria dies off faster than the body can eliminate them, making the patient feel worse before they feel better. This can seem counter-intuitive because when you take medication for an infection, you expect to feel better. But when you’re killing off a lot of spirochetes—especially if you’ve been sick for a long time—a Herxheimer reaction is natural and can be viewed as a good sign that the medication is working.

That said, a Herx can feel awful. Your fatigue is worse, your body feels laden with toxins, and you can barely move from bed except to run to the bathroom. The actual elimination of dead bacteria can be surprisingly intense; the first time I had a Herxheimer reaction, I couldn’t believe how often I was in the bathroom, or what was coming out of me. I can only describe it as “toxic bodily waste.”

For me, Herxheimer reactions tended to last up to a week or two, and then pass. Sometimes they were just a couple days long. It all depends on the patient, though. I know patients who have Herxed for a month or more. No matter how intense your Herxheimer reactions are, though, there are a few things you can do to lessen your suffering. These techniques worked for me:

  • Pulse your medications: Some doctors will have their patients take their antibiotics for a certain number of days or weeks, or then have them stop for a while to allow the body time to eliminate the dead bacteria. Other doctors switch up medications at certain intervals. Personally, I took single day breaks from medication when the Herxheimer reactions were especially intense.
  • Figure out which of your medications is causing the Herxheimer reaction. Herxheimer reactions can be caused by herbal supplements, not just by antibiotics or antimalarial medication. I find it’s best to only change one thing at a time in my own protocol; if I increase a homeopathic drop, I wait awhile to see how that goes before altering the dosage on a medication.
  • Eat foods that are known to help you detox: For me, lemon and onion work well; other patients use apple cider vinegar, or even intravenous Vitamin C, though this last option did not work well for me. Remember, everyone is different and you and your doctor need to figure out what’s best for you.
  • Drink lots of water to help flush your system.
  • Sweat: Those pouring night sweats are annoying, especially when you’re changing pajamas and sheets several times a night, but it means the infection is leaving your body. Some people find that light exercise helps. For me, though, exercise only made me feel worse. Others use infrared saunas to increase sweating. Personally, I can not handle the intense heat.
  • Electrolytes: Because you’re sweating so much, your electrolytes may become depleted. I find it helps to drink an electrolyte-infused beverage (try ones that are just water-based, without added sugar) to keep my sodium and potassium levels balanced. Sweating out spirochetes or parasites isn’t all that different from doing an intense cardiovascular workout, so you should consider how the electrolyte water is helping you to replenish your body.
  • Lymphatic drainage: When I’m herxing, bacteria tends to back up in my head, and my integrative manual therapist does lymphatic drainage and cranial sacral therapy to help open up flow from my brain. He also does neurofascial processing on organs that help the body detox, such as the liver. Note: avoid deep tissue massage at these times since it can hold toxins deeper in your body, making you feel worse.

These are only the detox methods that have worked best for me. There are many others recommended by both patients and doctors. At the 2017 International Lyme and Associated Diseases Society conference in Boston, I heard about curcumin, also known as turmeric, a member of the ginger family that acts as an anti-inflammatory and which has many uses to help mitigate Herxheimer reactions. Talk with your LLMD, and with other patients, about what works best for you.

Q. I know you’ve explained that you can’t give medical advice, but can you please tell me what your protocol was?

A. When you hear a story of someone in remission, it’s natural to want to know what they did to get there. But as I’ve explained in previous posts, telling you my specific protocol (which is ever-changing) is not the point, because every single case of tick-borne illness is different.  Even if your symptoms are similar to mine, our individual cases are guaranteed to be different in terms of how long we were sick, how long we went undiagnosed, whether our infections spread to the central nervous system, where else in the body the infections have spread, whether we have co-infections (and which particular ones), and, most importantly, how we responded to any given treatment. An antibiotic that worked well for me might not work at all for you. My protocol is tailored to my specific case, and yours needs to be, too. You and your LLMD may want to check out Dr. Richard Horowitz’s books Why Can’t I Get Better? and How Can I Get Better? Both books outline specific treatments for specific combinations of tick-borne illnesses.

In closing, let me say that in the past I’ve written about the big picture of what has helped me the most: a combination of medication and homeopathic supplements; nutritional supplements; a gluten-free, sugar-free diet; cognitive behavioral therapy; integrative manual therapy; talk therapy; and neurofeedback. I recommend a holistic or integrative approach that encompasses both Western and Eastern modalities as well as adjunct therapies. I recommend lots of rest and self-care. I recommend seeking out a helpful support system of concerned individuals. Unfortunately, I cannot recommend specific medications, and I hope you will understand that I withhold that information in the hope that you will find the right protocol fly working with your 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 jennifercrystalwriter@gmail.com

You’re Not Crazy—You Have Lyme

By Jennifer Crystal

I knew there was something physically wrong with me, but when my blood work came back clean and I didn’t fit into any classic diagnostic box, the nurses decided the symptoms were psychosomatic.

When I first got sick during my sophomore year in college, the nurses at the health center ran the typical “college” tests: mono, strep, pregnancy. The results were negative, so they told me that my fever, low blood sugar reactions, flu-like aches, exhaustion, and pounding headaches were a result of stress. I rested as much as I could, tried meditation and deep-breathing techniques, and dragged myself to class. When my symptoms persisted, I returned to the health center. The nurses told me I was just run down.

But I’d been taking care of myself since that first visit. I was eating better and sleeping more than I had during my freshman year, when I’d stayed up late partying and subsisted primarily on pizza and beer, and yet had still been perfectly healthy. I did burn the candle at both ends, but sophomore year I couldn’t have done so had I wished. I was too tired to do any of my usual activities like running, skiing, and participating on committees. I knew there was something physically wrong with me, but when my blood work came back clean and I didn’t fit into any classic diagnostic box, the nurses decided the symptoms were psychosomatic.

“Maybe you should see someone in counseling about all of this,” one of them said.

At the impressionable age of nineteen, I worried the nurse was right; maybe these symptoms were all in my head.

Ironically, they were in my head, but not as a result of hypochondria or any mental illness. Tick-borne bacteria and parasites were attacking both my body and brain. There were real spirochetes in my head, not psychiatric illnesses. My fevers, body aches, and hypoglycemia were caused by Lyme disease, and two of its co-infections Babesia, and Ehrlichia. But it would be another eight years before a Lyme-Literate Medical Doctor would figure all of that out, and by that time, I would have been told “it’s all in your head” by more people than I can count.

Unfortunately, my plight is all too familiar to patients of late-stage Lyme disease complicated by co-infections. At some point in their journey to recovery, many have been told that they’re crazy, too. And not just by medical practitioners. Sick patients, needing only support and care, also heard this message from family members, friends and co-workers. So common is this write-off of those suffering from unknown ailments that there’s an entire chapter in Denise Lang and Dr. Kenneth Liegner’s book Coping With Lyme Disease titled “I’m Not Crazy, I Have Lyme!” When I first read that chapter after being accurately diagnosed with tick-borne diseases, I wept. I knew exactly what it felt like to be so misunderstood.

I also knew exactly what it meant to feel “crazy” from Lyme. As Lang and Dr. Liegner write, “…talk to a thousand Lyme patients and you will get a thousand variations of the same story: people who are normally easy going become moody and belligerent; those who are outgoing become lethargic; mood swings cause the breakup of marriages and career relationships; the inability to concentrate results in job losses, plunging grades in school, and accidents; short-term memory loss affects habits and speech; and everywhere there is depression, a loss of self-esteem, and suicidal thoughts from people who have never had a history of such things.”[1]

The important thing to recognize is that these psychological manifestations are secondary to Lyme, not its root cause. At the 2017 International Lyme and Associated Diseases Society conference in Boston, Dr. Phillip DeMio of Ohio, who specializes in pediatric tick-borne illnesses and autism spectrum disorders, emphasized the fact that psychological symptoms of Lyme are not primarily psychiatric. He drew an analogy to head injuries, noting that a person acts strange because of a concussion, in the same way that a person with Lyme disease may exhibit unusual behaviors, but that’s not because either have a pre-existing psychiatric condition.

Mental illness is real, and should be evaluated and treated with respect when it actually is the root cause of a person’s unusual behavior. But a good doctor whose patient presents with a sudden onset of psychological symptoms, without precedent in their medical history, should look for all possible root causes, which could be psychiatric, but are more likely to be tick-borne illness, or some other disease.

No one should be written off as crazy, even those with mental illnesses. The word is pejorative. If you’re experiencing new symptoms, be they physical or psychological, or if you notice behavioral changes in a friend or family member, at least be open to the idea that the root cause might be other than psychological.  In my case, it was tiny spirochetes and parasites put in my system by a microscopic deer-tick. If my college health center nurses had considered tick-borne illnesses from the start my long-term health problems could have been a lot smaller, too.

[1] Lang, Denise and Liegner, Kenneth. Coping With Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment. 3rd ed. New York: Henry Holt and Company, 2004 (70).


Opinions expressed by contributors are their own.

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

Podcast: In The Lymelight Episode 6

Welcome to In The Lymelight: a show about…well…Lyme Disease. In the Lymelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also everything in between that is meant to make your day a little bit brighter. Hosted by fellow Lymie and alpaca lover Alex Moresco. I hope you enjoy listening in as much as I enjoy talking.

In our sixth episode of In The Lymelight, Alex sat down with Anne Desjardins, a fellow Lyme warrior who recently became a major advocate for those of us with Lyme: Anne recently took on the role of Regional Director of Berks County Lyme Support Group to help others struggling with our illness. Anne and I talk about the path to diagnosis, coping with being ill and how we can help others suffering from Lyme disease.

You can follow Anne on her Twitter, here. You can also get more info on the support group Anne runs by following them on Facebook, here.

Here is the link to Unlocking Lyme, as referenced in our chat.


Opinions expressed by contributors are their own.

For interview suggestions, information or just to say hi- you can connect with me on Instagram : @alitmoresco

 

 

 

 

Seasons of Lyme

By Jennifer Crystal

The change in seasons is usually an exciting time for most, but the jump from season to season can be especially trying for Lyme patients

In the past couple weeks, many people have told me that the recent change of the clocks to Daylight Savings Time is really getting to them. They feel tired and sluggish. While the Equinox should mark a positive shift towards spring and sunlight, the transition can actually be difficult for healthy and sick people alike.

I used to hear the term “spring fever” and assume it meant I was supposed to feel restless and excited for the upcoming season, like the people I saw running and playing outside. But I just couldn’t summon their energy. For me, spring fever manifested itself as malaise and, sometimes, an actual fever. All I wanted to do was sleep. I was not alone.

I’ve learned that while some people are able to jubilantly jump into a new season, it’s more upsetting for others, especially Lyme patients. For those of us suffering sleep disturbances, changing the clocks just one hour can seriously impact our circadian rhythms. I always experience an uptick in my sleep-related symptoms when I shift to Daylight Savings or back to Standard Time. I have more difficulty with insomnia, I have more nightmares, and I have trouble falling asleep for—and then getting up from—my afternoon nap. It can take me a week or more to get used to the new schedule.

But even without a time shift, simply the jump from season to season can be especially trying for Lyme patients. In my case, it may be my system is so compromised and is working overtime to fight infection, that it overreacts to the slightest changes. If I need to adjust a medication, I have to do so incredibly slowly, tricking my body into thinking that no dosage change is happening at all. If I get too hot or too cold, my body has a much stronger reaction than the non-Lyme sufferer would; I can overheat without warning, needing cool compresses all over my body, or I can get suddenly hypothermic.

Since climate change has altered the Earth’s ability to raise or lower temperatures based on the season, we’ve experienced heat waves in February followed by freezes and blizzards in March. That’s enough to send anyone’s system into shock, but for Lyme patients, these erratic weather patterns can cause the hyper-reactions I describe above. Many Lyme patients find that symptoms such as joint pain, fevers, and headaches—already difficult to control—become almost impossible to predict during seasonal fluctuations.

And it’s not just during the shift from winter to spring. Lyme patients struggle with every seasonal shift. I personally get more babesia symptoms such as air hunger and headaches in summer, while other Lyme patients might have worse joint pain in fall or winter.

Even though our bodies might react strongly to seasonal fluctuations, one advantage we Lyme patients have is resilience. If you really think about it, we experience internal season changes every single day. We can feel spring-like—energetic, full of possibility—for a morning, and then slip into a winter-like hibernation in the afternoon, often without warning. Lyme symptoms can vary daily if not hourly, and we have to learn to adapt to that unpredictability. If we can handle these shifts multiple times a day, we certainly can handle them a few times a year.

There are small steps we can take to help ourselves through seasonal fluctuations. I find it helps to be especially fastidious about my sleep hygiene during these times, making sure I stick to the same schedule, even if the clock changes by an hour. I allow myself a little extra time for rest during these periods. I wear more layers than most people do when it’s very cold outside, and cancel outdoor activities when the temperature rises above 90 degrees. I carry a water bottle with me where ever I go. I also sometimes have to change my medication or supplement doses seasonally, knowing that certain symptoms flare or subside depending on the weather.

Of course, it isn’t always easy to handle these shifts; they can be extremely frustrating. One hour we can be happy and hopeful, the next exhausted and depressed, later that day anxious and angry. We can experience summer and winter and fall and spring several times in a day, in no particular order, and that can make a patient feel really off-kilter.

If you’re in a tough season of Lyme, remember what we say in New England: wait five minutes, and the weather will change. Longer, brighter days really are ahead.


Opinions expressed by contributors are their own.

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

GLA POV: FDA Clears Quidel Lyme Disease Immunoassay for Sofia 2

by Timothy Sellati, Ph.D., Chief Scientific Officer, GLA

Global Lyme Alliance’s Chief Scientific Officer offers perspective on the new FDA approved Lyme disease blood test.

The U.S. Food and Drug Administration recently cleared the Quidel company’s Sofia Lyme Fluorescence Immunoassay (FIA) to be run on Sofia 2, a next-generation version of their Fluorescent Immunoassay Analyzer. The Sofia Lyme FIA employs immunofluorescence for the rapid detection of human IgM and IgG antibodies to Borrelia burgdorferi in serum and plasma specimens from patients suspected of Lyme disease. This qualitative test is intended for use as a rapid aid (10 minutes) in the diagnosis of Lyme disease. According to Quidel, all positive results for IgM and/or IgG antibodies using Sofia Lyme FIA should be further tested by a corresponding second-tier West-ern
immunoblot assay.

The assay uses a bidirectional test strip format to detect both IgM and IgG antibodies to B. burgdorferi. One side of the test strip detects IgM antibodies to multiple B. burgdorferi antigens and the other side of the test strip detects IgG antibodies using as little as 30 µL serum/plasma from a suspected Lyme disease patient. According to Erica Lovell, Quidel’s technical support manager, ”We are using a mixture of novel Lyme antigens that are specific to human IgM and IgG response. We have moved away from the more traditional Enzyme Immunoassay methods that used crude antigens. Our novel antigen mixtures have enabled us to maximize our sensitivity while maintaining a high degree of sensitivity.” This rapid test is not intended as a stand-alone determinant of B. burgdorferi infection status and a negative result does not preclude infection with B. burgdorferi. Nevertheless, a negative result would save time and expense insofar as testing by the more elaborate and second-tier Western immunoblot assay, which requires subjective interpretation of results, would be contraindicated.

Despite the rapid results obtained using the Sofia Lyme FIA, as pointed out in another GLA POV entitled “Advances in Serodiagnostic Testing for Lyme Disease Are at Hand,” improvements in serologic testing methods or protocols will not differentiate active infection from past exposure. Thus, ideally, use of NextGen tests like Quidel’s Sofia Lyme FIA will be coupled with other diagnostic methods to directly detect the presence of B. burgdorferi and other tick-borne pathogens in patient samples, thereby allowing discrimination between active vs. past infections. GLA is a leader in actively supporting research efforts to develop such direct detection methods.


timothy sellatiTimothy J. Sellati, PH.D. is Chief Scientific Officer at Global Lyme Alliance

As GLA’s Chief Scientific Officer, Dr. Sellati leads GLA’s research initiatives to accelerate the development of more effective methods of diagnosis and treatment of Lyme and other tick-borne diseases.

What is Air Hunger, Anyway?

By Jennifer Crystal

Chronic Lyme disease & its co-infections, like Babesia, can produce unique symptoms. One of them is referred to as air hunger.

When I tell people I have chronic Lyme and some of its co-infections, they often look at me quizzically and ask: “What’s a co-infection?” I explain that in addition to Lyme ticks can transmit other diseases as well. I get an understanding nod until I say the names of the diseases. Rarely have people heard of them: Babesia, Ehrlichia, and Bartonella. One of my graduate school professors got so tired of trying to say “Babesia” that he jokingly renamed it “babelicious.”

I get a similar reaction when I tell people that a chief symptom of Babesia is air hunger. Some hear the term and think of marathon runners or asthma patients. Most really have no idea what it actually means. Literally, it means to be hungry for air. But how is that related to Babesia, and what does the symptom actually entail?

Babesia is a parasite that eats the oxygen in red blood cells. This result is low blood oxygen levels in the body. When you are hungry for food, your stomach might grumble, and you might feel a gnawing or emptiness, a craving for sustenance. You might become lightheaded or even faint. The same is true when your blood is hungry for oxygen, except you feel the hunger in your cells rather than in your stomach.

You know when exercising how you can feel your blood pumping, whereupon endorphin release makes you vivacious and energized? That feeling when your muscles are a little tired from running or biking, but you’re also exhilarated, hitting that “runner’s high” when you feel like you can do a million jumping jacks?

I used to feel that, too. I used to ski for eight hours in the back bowls of the Rocky Mountains, bouncing through mogul fields with reckless abandon. And at the end of the day, my body would be loose and limber. I was tired, sure, but it was nothing that a good meal and a good night’s sleep couldn’t fix. The next morning, I’d be ready to ski again.

Then I got Lyme, Babesia, and Ehrlichia. At first, before the illnesses were properly diagnosed, I simply noticed that I couldn’t keep up with my fellow skiers as I used to. I tired more easily, needed more breaks, and often experienced blood sugar crashes and lightheadedness after a particularly intense run. Skiing at a high altitude means there’s less oxygen available, to begin with, but what I didn’t know was that a blood parasite was also compromising my oxygen levels.

As the tick-borne illnesses slowly took over my body, my post-exertional fatigue and hypoglycemia increased. Sometimes I’d experience these symptoms when I was simply walking down the street. I started to get terrible migraines, always after exercise but sometimes just after a long day of teaching, and sometimes for no apparent reason at all. What I didn’t know was that the oxygen level of my red blood cells was getting lower and lower, causing these debilitating symptoms.

One day towards the end of my second year of teaching in Colorado, I tried to go for a short hike near my apartment. I barely made it a few feet up the dirt path before I found myself gasping for air. I wanted to take a deep breath, but couldn’t get one. As I clutched my chest, another hiker asked if I was okay. “Asthma,” I wheezed, even though I’d never experienced that condition before.

A doctor did diagnose asthma but didn’t explain the sudden onset. He didn’t realize that my gasping for breath was a literal manifestation of air hunger caused by Babesia. Instead, he gave me an inhaler, which I sometimes needed to use in class; in the middle of a lecture, I would get so lightheaded and short of breath.

Later, when I was finally diagnosed with and treated for tick-borne illnesses, I experienced Herxheimer reactions so bad that skiing, hiking and even walking became activities of the past; I could barely get up a flight of stairs. Often my arms and legs would feel jumpy like I was having a panic attack. This is because they weren’t getting enough oxygen; the jumpiness was their way of “grumbling” like a stomach does when it needs food. My limbs felt, how can I put this? They felt empty, the opposite of the way they used to feel when they were pumped full of healthy oxygenated blood during exercise. I wanted to take a deep breath and send the air right to my limbs, right to my cells, to re-invigorate them, but I couldn’t.

Overeager during treatment, I started physical therapy too soon, and paid for it. A mere thirty seconds on a stationary bike left my limbs gasping for air. It seemed like a thick molasses was seeping through my whole body, weighing me down. A heavy sensation crept into my head, filling it with pressure until I was overtaken by a full-blown migraine. After, I was in bed for a week.

The good news about that experience is that it told my doctor I needed to increase my Babesia treatment. Anti-malarial medication got me back on my feet, eventually back on the stationary bike, and, finally, back on my skis. I don’t think I’ll ever be able to bounce through moguls for eight hours at a time again, but I can ski a full morning without getting air hunger. I can paddle-board or canoe for hours. Sometimes, when I push myself too hard, I feel a tightening in my chest for a day or two after exercise. And sometimes I begin to feel air hunger in my cells as I’m walking around the city, getting that jumpy feeling in my limbs when I climb a flight of stairs or get a headache shortly after exercise. This tells me that it’s time to increase the homeopathic drops I now take to keep Babesia at bay.

Now I can say to my doctor, “I’m starting to feel some air hunger,” and he knows exactly what we need to do. Hopefully, this explanation will be a revelation for those readers who, like me, were so long perplexed by this frightening undiagnosed symptom.


Opinions expressed by contributors are their own.

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

How to Show Someone With an Invisible Illness That You “See” Them

by Kerry J. Heckman

Invisible illnesses like Lyme disease are not always detected by your outward appearance. Here are 7 ways that you can show someone with an invisible illness that you “see” them.

Last summer Global Lyme Alliance sponsored an event in Chicago called the Sublyme Soiree. I invited my brother and sister-in-law to come with me. During the event, a doctor spoke about the impact of Lyme disease on his patients. I was so grateful that my family had made the effort to come to the event and that they were able to learn about the impact of Lyme from someone other than me. It was the first time in a long time I truly felt seen.

Invisible illnesses are not easily detected by our outward appearance. Because our illnesses are invisible we often feel invisible to the outside world. We are often mistaken for being “all better” or “not very sick at all.” In addition, many people with invisible illnesses, like chronic Lyme disease and autoimmune disorders to name just a few, experience flare-ups followed by periods of relief, which leads to further misunderstanding. If you have a loved one who has an invisible illness here are some ways you can show them that you care.

Never underestimate the power of snail mail

You know the feeling when you open up your mailbox and among the bills and junk mail, there is a card with your handwritten name on it? It always brightens your day. It’s nice knowing someone took the time to pick out a card or postcard at the store, write in it, buy a stamp and send it in the mail. Sending a card, postcard, or care package to someone who is chronically ill shows you care. Who knows? Maybe your card will arrive when the person is having a bad day and your compassion will make them feel less isolated.

Find a way to have fun on their terms

If you invite someone who’s chronically ill to an amusement park they are likely going to say no. If you invite them to tea, a short walk by a lake, or to a movie, they are more likely to say yes. It depends on their stamina. Some days are better than others. Try to think of an outing that doesn’t require a lot of energy. If the person is homebound, maybe you can binge stream a television show with them while sharing a pint of ice cream.

Remember chronic illness is inconsistent. On a good day people with chronic illness are able to do more but on a bad day, they may not be able to leave the house. The problem is we don’t know when we will have a bad day. It makes it difficult to plan, so try to be understanding if the person needs to change or cancel plans.

Never question a symptom or diagnosis

People with chronic illnesses are constantly being questioned by those in the medical field and also by people close to them. Frequently, we are questioned about our fatigue and pain—two things that can’t be seen and that change from day to day.

If you want to show a person with chronic illness that you care about them, take them at their word. If they say they are tired, they are tired. If they say they are in pain, they are in pain.

Ask about triggers  

Each person with chronic illness has different triggers. Personally, I’m triggered when people joke about my diet choices or comment about antibiotics being bad for me. The reason these are triggers for me is because I don’t want to be on a restricted diet or take antibiotics, but both make me feel better, so I do what I have to do.

For a person with chronic illness, each treatment decision comes with careful consideration and a great deal of anxiety. Once that treatment decision has been made, an outsider adding their two cents only causes more anxiety on behalf of the patient. If you are seriously concerned about a person’s treatment decision there is a way to discuss it without judgment.

Learn something about their illness

There is a wealth of information online about every illness. Take a few minutes and read up on what your loved one is going through from a reputable source. If your friend or family member posts a link with information, click on it and gain some new knowledge.

Recently, my dad alerted me to a new documentary on ME/CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome). I didn’t know he knew that was one of my symptoms. It meant a lot that all those times I was talking about my fatigue, he was listening and wanted to learn more about it.

Attend an awareness event or donate to the cause

If a loved one asks you for a donation or to attend an event for a cause, do what you can to make it happen. We all know how difficult it is to ask for money or time from someone, and when it is related to a friend or loved one’s personal health challenge it can make them feel even more vulnerable. This, of course, is not always possible. There may be financial and time restrictions that are insurmountable. It is not an expectation, but know that it will mean a great deal to the person.

Don’t treat them like they are a different person

When someone is diagnosed with a chronic illness they may change their behavior, but remember they are still the same person. Try not to avoid them or treat them with kid gloves. We may feel different in many ways, so we count on those close to us help us remember who we are.

At the end of the day, one of the most effective things you can do is ask yourself, “If I were sick, what would I want someone else to do for me?” Your friend or family member won’t expect you to do everything on this list. They will be pleasantly surprised if you do one or two of these things.

 


kerry heckmanOpinions expressed by contributors are their own.

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

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