Tag Archives: chronic lyme

essential oils_lyme disease research

GLA POV: Essential Oils as Treatment Against Lyme Disease

by Mayla Hsu, Ph.D., Director of Research and Science, GLA

Global Lyme Alliance’s Director of Research and Science offers perspective on newly published research on using essential oils to treat Lyme disease

 

Global Lyme Alliance (GLA)-funded investigator Ying Zhang, Ph.D. (Professor at Department of Molecular Microbiology and Immunology, Johns Hopkins Bloomberg School of Public Health) details new findings on the effectiveness of certain essential oils to treat Lyme disease; “Identification of Essential Oils with Strong Activity against Stationary Phase Borrelia burgdorferi.”

Persister forms of B. burgdorferi, the bacterium that causes Lyme disease, are dormant or slow-growing, and tolerant of antibiotic treatment. It’s not clear yet whether persister bacteria, immune dysfunction, or some combination of the two is responsible for post-treatment Lyme disease syndrome (PTLDS), in which patients treated with antibiotics continue to suffer symptoms.

The search for novel compounds to kill persister bacteria has led to the discovery that essential oils (EOs), aromatic compounds produced by plants, may be promising. In an article published in Antibiotics, a peer-reviewed journal, scientists led by Dr. Ying Zhang identified 10 EOs that have strong activity against stationary phase B. burgdorferi at a low concentration of 0.1%. The study, underwritten by GLA, found that of the 10 EOs, those of garlic, allspice, and Palmarosa were active at even at 0.05% concentration. In addition, cinnamaldehyde, a major ingredient isolated from cinnamon bark, was active against both stationary phase bacteria as well as replicating B. burgdorferi at a 0.02% concentration.

A stringent test of antimicrobial activity against stationary phase bacteria is the capacity to block subcultured bacteria from growing. This means that after killing bacteria in culture with the inhibitor, a small amount of that culture is transferred to fresh growth media that lacks the inhibitor. Any regrowth indicates that the inhibitor did not completely kill all bacteria from the original culture. Under these conditions, only garlic and cinnamaldehyde were effective against the regrowth of B. burgdorferi spirochetes subcultured for 21 days.

These results indicate that certain EOs or their ingredients are potent in eliminating persister B. burgdorferi, and should be studied in greater depth to analyze their utility as potential treatments.

vancomycin

GLA POV: Identifying Vancomycin as an effective antibiotic for killing Borrelia burgdorferi

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

Global Lyme Alliance’s Chief Scientific Officer offers perspective on newly published GLA-funded research out of Northeastern University

 

Although the underlying premise of a recent study by Wu et al. — “…that minimizing the time the pathogen interacts with the host will diminish the probability of developing PTLDS [Post-Treatment Lyme Disease Syndrome], irrespective of its nature.”[1] — is scientifically sound, the exact nature of PTLDS remains unknown.  PTLDS is characterized by persistent or recurrent symptoms of fatigue, musculoskeletal pain, and cognitive complaints leading to functional decline. It is recognized that currently approved antibiotics for treatment of Lyme disease fail to impact these symptoms after they develop. Thus, novel strategies that quickly and efficiently eradicate the pathogen during acute infection are needed to prevent patients from developing PTLDS in the first place.

Kim Lewis, Ph.D. (Department of Biology, Northeastern University), a Global Lyme Alliance (GLA)-funded investigator, set out in search of an antibiotic with superior capacity to kill Borrelia burgdorferi, the bacterial spirochete and causative agent of Lyme disease. Having examined approved antibiotics for their ability to kill B. burgdorferi, Lewis found Vancomycin to be more effective in killing B. burgdorferi in vitro (in a test tube culture) than Ceftriaxone, the current standard of care for disseminated Lyme disease. Vancomycin also was most effective in killing stationary-phase (i.e., non-replicating) bacteria. This is an extremely important, yet unexpected result given that inhibitors of cell wall biosynthesis (e.g., such as Vancomycin) are known to only kill growing bacteria. This seeming paradox was explained by finding that, unlike in other bacteria, peptidoglycan, a component of the cell wall, continues to be synthesized in stationary cells of B. burgdorferi.

The importance of this finding cannot be overstated. There is mounting evidence, now including non-human primate studies by GLA-funded investigator Monica E. Embers, Ph.D., of Tulane University to suggest that spirochetes may persist in mammalian hosts in a metabolically non-replicating state that make them resistant to treatment with Doxycycline, the primary antibiotic of choice for treatment of acute Lyme disease. Another intriguing observation is that although Doxycycline failed to clear B. burgdorferi in severe combined immune deficient (SCID) mice, Vancomycin was highly effective despite an impaired immune system. This is exciting insofar as many Lyme patients, with or without PTLDS, are often immune compromised due to tick-borne co-infections or other diseases that hobble their body’s ability to fight off the persisting spirochetes.

Collectively, the results outlined in this new GLA-funded study are cause for considerable encouragement and argue strongly for clinical trials to examine the impact and merits of earlier use of more potent antibiotics on development of PTLDS.


[1] Identifying vancomycin as an effective antibiotic for killing Borrelia burgdorferi.
Wu X, Sharma B, Niles S, O’Connor K, Schilling R, Matluck N, D’Onofrio A, Hu LT, Lewis K. Antimicrob Agents Chemother. 2018 Aug 20. pii: AAC.01201-18. doi: 10.1128/AAC.01201-18.

GLA Point of View on New Lyme Disease Study

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

A study funded in part by Global Lyme Alliance could spur further investigation into the cause of persistent symptoms, a source of medical controversy.

A controversial aspect of discourse in the medical and scientific community has been whether and how long some patients can suffer from symptoms initially triggered by infection with Borrelia burgdorferi, a bacterial spirochete and the causative agent of Lyme disease.  The underlying question being, can Lyme disease be chronic and are there clinical parameters by which this condition or syndrome can be defined?

Approximately 329,000 people in the U.S. are clinically diagnosed each year with Lyme disease.  Studies have reported a wide range (5 to 30 percent) of these individuals go on to experience Post-treatment Lyme disease syndrome (PTLDS).  PTLDS is a disorder defined as the development of significant fatigue, widespread musculoskeletal pain and/or cognitive difficulties that arise within six months after completion of antibiotic therapy for physician-documented Lyme disease and that last for at least six months.

The latest study to tackle this question, “The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome,” led by John N. Aucott, M.D., (associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Clinical Research Center) and funded in-part by Global Lyme Alliance.  The results were published in the December issue of Frontiers in Medicine demonstrating that PTLDS is a real disorder that causes severe symptoms in the absence of clinically detectable infection. Key to the success of this study was the meticulous way in which the researchers gathered prior medical records for evidence of Lyme disease that excluded patients with conditions that may mimic those of PTLDS and whose inclusion would confound interpretation of results.  In a well-curated population of 61 patients, Johns Hopkins researchers found that although physical exam and laboratory tests showed few objective abnormalities distinguishing PTLDS patients from healthy control subjects, standardized symptom questionnaires revealed that patients with PTLDS are highly and clinically significantly symptomatic, with a poor health-related quality of life. PTLDS patients exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls.  Perhaps most importantly, the study showed that PTLDS can be successfully identified using a systematic approach to diagnosis and symptom measurement.

An important conclusion drawn from the study is that “As the prevalence of PTLDS continues to rise, there will be an increased need for physician education to more effectively identify and manage PTLDS as part of integrated patient care.”  Aucott cautions that because so little is known about the origins of PTLDS, its underlying cause has remained unclear, and a range of hypotheses exist.  However, with the advent of this study and the ability to unequivocally identify PTLDS patients suffering from persistent symptoms, investigators can begin the search for the cause and biological markers of this chronic Lyme syndrome and, ultimately, a means to prevent its development in the first place.

To review the press release from Johns Hopkins Medicine, click here. 


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.

Chronic Lyme Disease Series: Chelsea’s Story

Reprinted with the permission of itslyme.com
#MyLymeLife

My Lyme disease story starts two years ago.

At 27 I was fully devoted to my career and would blow off steam from a long day’s work at a kickboxing class 2-3 times a week. It felt good to release negative energy after a stressful day. But in April 2015, I started missing regular workouts because I just couldn’t shake the flu. I had a scratchy throat, mild fever, swollen lymph nodes, muscle aches as well as sudden bouts of vertigo. This would come and go for a few days at a time but I would never actually get sick.

As the months dragged on my health did not improve and my energy was dropping. I couldn’t stay late at work when my job demanded it and would limit social engagements. I felt like my body was telling me, “You’re not getting enough XYZ!!”. If only I could figure out what XYZ was – surely I’d feel better. My new family doctor, a female, thought I was being dramatic and ordered some routine blood tests and a physical exam to quell my fears. It turned out I was deficient in Vitamin D, a common ailment in our cold Canadian climate. I started taking a supplement and carried protein bars since I was also borderline hypoglycemic. Years later I would find out that reactive hypoglycemia is common in Lyme-MSIDS (Multiple Systemic Infectious Disease Syndrome) patients (Horowitz, 2017).

My bloodwork had come back with a positive Mono-spot test.

Despite my Vitamin D levels increasing and eating smaller, more frequent meals I still didn’t feel like myself, so I kept at it. After a few more rounds of blood work and months later, my family doctor called to say she had some results. My blood work had come back with a positive Mono-spot test. Little did I know, my positive Mono test and host of seemingly unrelated symptoms was a hint at something larger and much more dangerous. Many of us carry viral infections without knowing it and being infected with Lyme disease (and other co-infections) can cause a reactivation. Epstein-Barr is one of the most commonly reactivated viruses. (Horowitz, 2017)

I took about a month off work to recover from Mono. This would help subdue my dizziness but my health would continue to decline over the next nine months. When my symptoms were at their worst, my exhaustion would result in difficulty walking or standing for more than a few minutes. This would later be diagnosed as POTS (Postural Orthostatic Tachycardia Syndrome) which is a form of autonomic nervous system dysfunction. It explained my uncontrolled blood pressure, dizziness especially after standing, brain fog and some of my digestive issues.

My family doctor was tired of listening to my complaints and ran out of specialists to send me to (six in total). Blood tests, MRIs on both my brain and stomach, neurological exams, echocardiograms, Holter monitors and plenty of EKGs – all came back fine. I also investigated other options including the Mayo Clinic, which turned me down. Best Doctors, a second-opinion medical service available through my insurance, diagnosed me with Somatization disorder (it’s all in your head disorder). The only hints in my bloodwork were a consistently raised ANA (anti-nuclear antibodies), elevated liver enzymes and deficiencies in B12, Zinc and Vitamin D, suggesting my body was over-worked and fighting an unknown intruder.

It had taken nearly two years to receive a proper diagnosis for the many symptoms that ailed me

In the fall of 2016, I decided to see a Naturopath and she wanted us to take Lyme Disease seriously, despite the fact I had tested negative multiple times through the provincial testing protocol in Canada (which is famously unreliable). I sent my blood away to California (IGeneX labs). My result was positive for Lyme Disease and Ehrlichiosis (caused by various types of Ehrlichia formerly called HME, human monocytic ehrlichiosis; the severity of the disease can range from mild to life-threatening. It had taken nearly two years to receive a proper diagnosis for the many symptoms that ailed me, but it made so much sense when I began to educate myself. My body had been under attack and was crumbling under the pressure. Due to the prolonged emotional and physical stress of those two years, my adrenal system was extremely fatigued, further worsening my sleep, hypoglycemia, and energy. After starting treatment with a Lyme-literate doctor I was also clinically diagnosed with Babesia and Mast-Cell Activation Disorder.

If it wasn’t for my Naturopath I don’t know where I’d be today. I hope that by telling my story someone else will be saved the pain I was caused by Doctors and Specialists who brushed me off and misinformed me about Lyme Disease. Always listen to your body and trust your instincts. Keep searching until you find the answers you deserve.

Chelsea’s Symptom Breakdown:

First onset symptoms: Dizziness, vertigo, lightheadedness, fatigue, feeling ‘rundown’, sore throats, migraine aura, swollen lymph-nodes, hypoglycemia

Recall tick bite/bullseye rash? No; possible rash

Chronic Lyme disease symptoms: Extreme fatigue, insomnia, POTS, low-grade fever, poor circulation, brain fog, stumbled walk, muscle aches, sore throats, inflamed gums, migraine aura, heart palpitations, heart block, heart murmur, low BP/high BP, difficulty breathing/shortness of breath, stiff joints, heightened anxiety, phantom sounds (between sleep and awake), difficulty remembering common words

Diagnosis before Lyme  disease: Mononucleosis, B12 deficiency, Somatization disorder, anxiety

Lyme Disease and co-infections diagnosed by:  Blood test through multiple labs in the USA (IGeneX and MDL) as well as clinically with a Naturopath, also receiving treatment for adrenal fatigue, mast cell infection, and Babesia.


Chelsea is the creator of itslyme.com. Chelsea’s treatment is ongoing and she looks forward to returning to work in the coming months. She is hopeful for a 90-100% recovery and thankful to the Lyme community for the support she’s received.

 

References

Horowitz, R. I. (2017). How Can I Get Better? New York: St. Martin’s Press.

57 miles

Tackling 57 Miles to Take on the Fight Against Lyme Disease

Allison Donaghy is taking her fight against Lyme disease to the streets, for 57 miles to be exact.

 

As countless thousands prepare for the grueling 26.2 mile New York City marathon this fall, a Washington D.C. area woman has her sights set on a different goal. On November 2 she plans to run 57 miles from the Penn State track in State College, PA to the Bucknell University track in Lewisburg to raise funds for Global Lyme Alliance (GLA).

57 Miles? That distance would be an amazing accomplishment even for the most accomplished athlete. But for Allison Donaghy, who is battling late-stage Lyme disease, the challenge is even more awe-inspiring.

This will be the first 50+ mile run for Donaghy, a 2012 Bucknell alum, who was diagnosed with Lyme in 2016, after several years of searching for a medical answer to her many health issues.

She still deals with many symptoms that could have been prevented if she had been correctly diagnosed at the start, but Donaghy is not one to entertain regrets.

Donaghy, 27, was part of both the cross country and track teams during most of her years at Bucknell, decided to take on the lengthy 57 mile challenge to raise Lyme awareness. “At Bucknell,” she says, “the men’s cross-country team has a tradition of running from one campus to the other, so I am carrying on that tradition through my ultra-distance fundraising challenge.”

Allison Donaghy, North Face Endurance Challenge, Algonkian Regional Park, VA, April 2017

A life-long runner, Donaghy said that prior to being diagnosed with Lyme she had some health issues, but that trying to discover the cause was like a “wild goose chase.” She asked her then-primary care doctor for a Lyme test in 2015. But when only three of the five bands on the test came back flagged (the Centers for Disease Control and Prevention requires five for a Lyme diagnosis) her doctor told her she was probably just stressed. Yet her symptoms persisted and grew worse. Donaghy began losing her hair, felt extremely tired, suffered constant headaches, joint pain and digestive problems.

After several ER visits, she went to the Mayo Clinic in Florida and saw a number of doctors there, but left with no answers. She also saw gastro-intestinal doctors and was told she might have Crohn’s disease. One doctor diagnosed Donaghy with chronic gastritis. “But because I was having so many other non-digestive issues, she urged me to see another specialist, perhaps even a Lyme literate doctor,” Donaghy says. She took the doctor’s advice, found a Lyme Literate Medical Doctor and was diagnosed in short order with chronic Lyme.

“I was relieved I had an answer,” says Donaghy, a freelance writer/editor who works as an assistant manager at Pacers Running in Alexandria, Virginia, “but I wasn’t sure if the treatments would work.” She was put on four months of antibiotics and other medicines, numerous supplements and changed her diet radically.

“I feel a lot better, but it doesn’t mean I don’t have bad days,” she says. “I still deal with symptoms which could have been prevented if my initial doctor had known more about Lyme and I had been correctly diagnosed. But I feel fortunate that I am still able to run and do many things I love, compared to others who struggle with a late diagnosis of Lyme.”

On November 2, Donaghy’s plans to run and walk, stopping every five miles to make sure she has enough nutrition and hydration. She will have a crew on hand during the run to make sure she’s okay and her twin sister, a cyclist, will be riding alongside her.

“I’ve been running for as long as I can remember,” she says, “and running to raise awareness was an easy leap for me.” Nevertheless, she knows it won’t be easy. “I have no illusions that it isn’t going to hurt a lot, but I am excited about the challenge.”

Naturally, she hopes people will donate to support her fundraising effort (see link below). “Some of the stories I’ve read [about Lyme sufferers] are heartbreaking. Their lives are forever changed by the disease. These individuals are the ones who motivate me to run more than anything. I want to make a difference in the lives for those who are so much worse off than me.”

“Allison is truly a Lyme Warrior,” said GLA’s CEO Scott Santarella. “We’re deeply appreciative that she wants to raise awareness and funds that are so important in fighting this and other tick-borne diseases.”

Donaghy says she decided to advocate for GLA because “the organization’s mission to fund research and educate doctors about Lyme disease really resonated with me. I hope that the funds I raise will make a real difference in someone’s life.”


Click here to support Allison’s amazing 57 mile run.


Why You Should Never Make Fun of a Restricted Diet

by Kerry Heckman
#MyLymeLife

For some patients with chronic illness, including Lyme disease, a restricted diet can improve their lives. So why the ridicule?

 

The jokes are everywhere. There is a popular meme that reads, “It’s gluten-free, sugar-free, dairy-free, soy-free, egg-free, & fat-free. They call it ‘water’ and you can buy it at Whole Foods.” Implying that the only thing someone on a restricted diet can have is water and only shop at grocery stores with a reputation of being pretentious. (Not that anyone on a gluten-free, sugar-free, dairy-free, soy-free and egg-free diet would ever eat anything that was fat-free, but that’s beyond the point).

I’m on a restricted diet and I’m often embarrassed to talk about it. Why am I embarrassed? Because there is a general consensus that special diets are a fad and only obnoxious people eat that way.

Why do I eat the way I do? By the time I was 34, I had already been diagnosed with two autoimmune disorders, later to be correctly diagnosed as chronic Lyme disease. I was in so much pain I couldn’t turn over in my bed without screaming. The doctors found so much inflammation in my spine and muscles in my back I was hospitalized for five days and underwent two biopsies. Conventional doctors offered no viable solutions.

An integrative medicine doctor encouraged me to try something called the autoimmune protocol diet, which is an extremely restrictive, low inflammation diet with no grains, no dairy, no sugar, etc. After only two weeks on the diet my back pain subsided and I was finally able to sleep. Eventually, the diet became too restrictive for me, so I modified it to meet my needs. Basically, I avoid processed foods, gluten, dairy and sugar. I had to give up a lot of the foods I love, but it changed my pain level from a steady eight to an intermittent two. When it came down to living in constant pain or giving up gluten, I had to choose the latter.

Nevertheless, I still get rolled eyes and laughter when I discuss my diet, even from people who know I’m sick. To be honest, before I got sick I probably would’ve reacted the same way. What people may not understand is that we don’t want to eat this way, we have to eat this way. We love gluten. Gluten makes doughnuts doughy, bread spongy, and pasta unsticky. It was next to impossible to give it up, and I still miss it every time I pass a bakery or pizza place.

The harsh reality is there has been an upsurge in people diagnosed with autoimmune and chronic diseases. You probably know someone with one of these diseases. Do you remember knowing so many people with such diseases the 1980’s or even the 1990’s? Probably not. I know I didn’t. Autoimmune disorders and chronic immune system dysfunction numbers are skyrocketing.

Integrative and functional medicine practitioners believe these illnesses are caused in part by the standard American diet. If people better understood the link between of certain foods and inflammation, they would realize it’s no laughing matter. We need a wake up call that our immune systems cannot handle all these inflammatory foods. For some patients with chronic illness changing their diet can save their lives. For a good example, read about Dr. Terry Wahl’s battle with MS and how she got her life back when she changed her diet.

Consider approaching the issue from a place of compassion. What if you had to give up your favorite foods? What if one piece of birthday cake made you ache for days? What if you had to stop going to all your favorite restaurants? What if you couldn’t have a glass of wine on a Friday night?

I understand restrictive diets are challenging to accommodate in social situations. It’s why many people on these diets stop going out entirely, leading them to social isolation and even depression. They are forced to choose between friendships and unrelenting symptoms.

In these situations the host can offer to dine at their own house or choose an activity that doesn’t involve food. As the demand for healthy options keeps growing, I am constantly finding new restaurants that fit my dietary restrictions, so maybe ask your guest where they are able to dine.

There are a few areas of concern one should be conscious of when discussing dietary restrictions. One is that it is very expensive and time consuming to eat a low-inflammation diet; therefore, people with limited resources might struggle to maintain it. A second concern is that some people don’t have dramatic results from the diet, which can be disheartening. And finally, some people take restricted diets to the extreme so it can itself become an eating disorder.

Everyone deserves to eat what they want without being put down. We have to stop mocking people who try alternative ways feel better. There are people who don’t have chronic illness who follow a special diet and the reasons are still valid—such as losing weight, gaining energy, and feeling better about themselves. Someday not so far in the future, no one will be on a restricted diet, because everyone will be.

I love lighthearted fun and joking around, but it’s time to take this one off the table.


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.

Groundhog Day: Casting a Shadow on Lyme Disease

by Jennifer Crystal

The repetitiveness of living with Lyme disease can feel like Groundhog Day, over and over again.

 

When I was studying in France, I had dinner with my landlady on Groundhog Day. Except, as I describe in my memoir Et Voilà, “there are no groundhogs in France, so February 2nd is instead marked by a national celebration of crêpes.” As we sat down to a decadent meal of savory and sweet crêpes, I tried to explain to my landlady the tradition of Punxsutawney Phil. She gave me a look that said, you must just sound crazy because you don’t speak French well.

Now that I am fluent in another language—Lyme disease—I have similar trouble explaining myself. Because so many of our symptoms are interior, Lymies have difficulty getting healthy people to understand how we’re feeling. One aspect that’s particularly tough to communicate is the repetitiveness of the disease: days that roll into one; daily medication routines; obsessive thoughts; word and song iteration. Lymies tend to feel like Bill Murray in the movie Groundhog Day, when his character discovers he is stuck living the same day over and over.

Unfortunately, our problems don’t resolve in the span of a two-hour movie. Instead, we find ourselves playing out the same scenes day in and day out. When I was at my sickest, I’d go to bed hoping I’d feel a little better in the morning, and wake up feeling either exactly the same, or worse. Because of Herxheimer reactions and the ebb and flow of Lyme treatment, the worse-before-better phenomenon became frustratingly common. With each new day, I didn’t know if I’d move forward, stay put or take two steps back. Rarely did I take a step forward, and even when I did, it would be quickly followed by one or more steps back.

Most days I’d wake up feeling like I hadn’t slept. Sometimes I was exhausted from eight or more hours of harrowing nightmares. I’d want to roll over and go back to sleep, but couldn’t. I had to stick to a very specific medication routine. Each morning I’d attach a bolus of antibiotics to my Peripherally Inserted Central Catheter (PICC line) and watch it drip for an hour while I ate breakfast. Due to dietary restrictions, that breakfast didn’t vary much. Afterwards I’d swallow at least ten pills of various shapes, sizes, and colors, then eat a spoonful of peanut butter, the fatty food necessary to absorb a glowing anti-malarial syrup often referred to as “liquid gold”.

After breakfast I’d try to send a few emails, though that was dependent on how stiff my fingers were and how thick my brain fog. Some days I could write paragraphs, and eventually wrote pages of my book. Other days I couldn’t type or hold a pen, and couldn’t concentrate on even one sentence. On those mornings I’d retreat back to bed, sometimes dozing off but often just lying there, listening to the clock tick.

This went on until lunch, when I’d break for another meal and more pills, and then I’d try again, often unsuccessfully, to nap in the afternoon. I’d get up in the evening when my family came home and would try to sit at the table long enough to hear about their days, which had variety. They did different things at work and school. They had meetings in different locations. They had coffee with different people. They meant well when they asked me, “And how was your day?” but the question made me cringe, because I always gave the exact same report. After awhile, I was able to drive myself to appointments, meet friends for lunch, and tutor high school students in French. But for a long time—years—my days were very, very quiet.

blog_JC_groundhog_lyme_quote

That’s not to say my brain was quiet. Though I didn’t give it much fodder since I couldn’t read, watch TV, or focus on audiobooks or music, the spirochetes in my head latched onto a time my brain could do all those things. Each day I’d wake up with a song in my head. There was no rhyme or reason to which song my brain picked; when I woke up it was just there, playing over and over and over as a perpetual soundtrack for the day.

Everyone knows how annoying it is to have a song stuck in your head. But imagine what it’s like when you’re bedridden and can’t go out into the world and do something to make you forget the song. Imagine what it’s like when your head already feels like its filled with molasses, when you are exhausted but can’t sleep, when you have nothing to do but lie there and “listen”.

Sometimes, it wasn’t just one song. As the day went on my brain would add to its repertoire, so that I’d have three or four tunes playing at once. This cacophonous mashup made me want to shake my head and scream.

It wasn’t just songs that were stuck in my head, either. Ideas played on repeat, too. Many Lymies describe having obsessive thoughts. For me, it was like I had a voice in my head narrating lines from my book or reactions to conversations I was a part of. It would read those lines again and again. The needle in my head was stuck. My world was not quiet; it was maddeningly repetitive.

Now that I’m in remission, I can tell when I’m having a flare-up, because I start thinking of everything twice. It’s not a conscious choice. It’s just the place my brain goes when its overtired. That’s a sign for me to rest, to have a neurofeedback session, to get some cranial sacral therapy. No matter how well I’m doing, I still always have a song in my head. Always. Right now it’s “Payphone” by Maroon 5. I’m not at a payphone—haven’t used one in years, in fact—but that’s where my brain is. Luckily, my daily songs play in the background now, because so much living is happening in the foreground. The songs and the occasional word iteration are bearable, because in general, I am taking daily steps forward. I am even back to eating (gluten-free) crêpes.

I lived the movie version of Groundhog Day for a long time. I promise you, with proper treatment the long winter does eventually end. Here’s hoping that Punxsutawney Phil will not see his shadow this week, and you will have an early spring.


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]

What It’s Like to Have an Illness No One Believes In

by Kerry J. Heckman
#MyLymeLife

4 Lyme Bloggers Speak Out About Living with Lyme Disease

 

A doctor recently told me, “I don’t believe you have Lyme.”

It’s not the first time I’ve heard it and it probably won’t be the last. I was diagnosed with Lyme after ten years of being undiagnosed and misdiagnosed. I didn’t believe it either at first. It took two positive test results, a specialist’s reassurance, and hours of internet research to finally become convinced. Each time a new doctor questions me, I doubt myself all over again.

What’s it like to have an illness no one believes in? The experience is different for everyone and we are all at different stages in our illnesses. It’s still early in my experience, so I asked four other Lyme bloggers to weigh in.

Christina Kovacs of the blog Lady of Lyme says, “I believe that the ‘experts’ who spread the lie of chronic Lyme not being ‘real’ do know better, but choose to turn a blind eye.” Yet even after five years of living with this diagnosis, she still believes there is hope.

christina kovacs_lyme blogger“In early 2017 it is much more difficult to deny the existence of Lyme. Borrelia spirochetes have been found in brain tissue during post-mortem autopsies, and even fetal tissue of miscarried babies. The voices are growing, and the science is growing, which gives validity to the pain of every patient. On top of that, we have amazing senators and representatives, who along with patient advocates have passed laws to further advance Lyme disease treatment guidelines.

“But overall, when I am confronted with a non-believer (be it a Doctor, a nurse, or a layman), I find it only fuels me. That doubt just lights a fire under me to fight harder to enact change. I feel very lucky that celebrities have lent their voices to Lyme disease awareness, because it shines a broad light of legitimacy on the cause.”

Kami Lingren writes the Living Grace blog and she believes even when we are faced with adversity from the medical system it is important to be your own best advocate.

Kami Lingren_lyme blogger“Living with a disease that is misunderstood, even disbelieved, can be heavy. It takes strength to repeatedly stand up for yourself in conversations with doctors who belittle, laugh (yes, literally), and minimize your symptoms and diagnoses—all for the simple fact that they cannot see or understand what’s happening in your body. I now struggle to view hospitals or doctor’s offices as safe zones, because they usually produce more pain than help. It won’t matter how excruciating my pain is, how many symptoms are overwhelming my body, or how very real my struggle to breathe is. The response is consistently ‘you’re fine.’ One thing’s for certain, though: you learn to rise up and take care of your own health and to find doctors who will listen to you and understand your illness. Because we’ve also learned this: that life and time are too precious to wait complacently.”

Lyme warrior and blogger Victoria Faling touches on one of the biggest issues for Lyme patients— the fear of family, friends, and doctors thinking we are making it all up.

victoria faling_lyme blogger“The hardest part about having an illness that no one believes in is that people think you are exaggerating or acting a certain way to get attention. People you love and trust start to question you (whether it’s outright or in their own minds), which makes you trust and love them just a little less. It makes you not want to share with anyone and close yourself off, so you can just deal with your health in the safety of your locked room. The hardest part is trying to act as normal and healthy as possible around others as to not make them feel uncomfortable, which only makes you feel worse because the acting takes so much energy. Having an illness that no one believes in makes you want to scream from the tallest mountain, ‘Believe me! I’m sick! The pain is real!’ It makes you wish everyone around you had to deal with your symptoms for just one hour so that they can understand. But you can’t do those things and that’s hard to bottle up and contain. The hardest part is how incredibly angry and sad you feel; lonelier than you ever thought possible.”

With all the emotional pain, Victoria believes there is a silver lining, “But it also makes you realize who truly loves you no matter what, no matter if you actually are crazy, because they stick around through it all, listen to every complaint you have, and hug you whenever you need it, even if you don’t want it.”

Many Lyme patients would agree with April Moor of the blog Fitness Nutrition and Moor

april moor_lyme blogger“There are many obstacles and struggles when you are a person suffering from Lyme disease. One of the largest is that you have an illness that not many people actually believe in.”

She compares the difference between living with Lyme and living with other diseases that are more well-known. “There would be walks completed in your honor, scientists would spend endless hours researching a treatment, insurance would cover your doctor visits and medications, and people would ask how you are feeling for the entirety of your illness. With Lyme, there seems to be a limitation to how much people care. Because we don’t often look sick, people don’t ask how you are feeling, they don’t understand why you are always tired, and how about those harsh diets that we are on, they definitely don’t support that. Lyme disease is a lonely and helpless journey that only fellow ‘Lymies’ understand.”

After a year of following and communicating with Lyme patients like these bloggers, I can’t believe anyone would deny their pain, suffering, and resilience. Because of the willingness of these four women to share their stories, I’m finally learning to trust myself and my team. The doubts are getting softer and my voice is getting louder.

Keep speaking up for yourself, keep speaking out. Lyme is real and you deserve to be heard.


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.