For all the individualized experiences Lyme patients face, one recent event has unified patients, physicians, researchers, and Lyme organizations alike … a recent article in The New York Times that vehemently denies the existence of post-treatment Lyme disease and chronic Lyme due to the claim that Lyme disease is always easy to cure.
Global Lyme Alliance (GLA) supports the Lyme community’s uproar regarding the recent New York Times opinion piece by Apoorva Mandavilli, “My Son Got Lyme Disease. He’s Totally Fine. Horror stories about lingering Lyme disease proliferate, but the illness is easily treated.” Mandavilli identifies herself as “an award-winning science journalist”, yet the piece does not take a scientific approach in addressing the disease. The author’s off-hand dismissal of Lyme in any stage other than acute is short-sided, scientifically incorrect, and extremely damaging. Aside from the blatant indifference of individual patient experiences with the disease, there is an apparent deliberate disregard for science-based evidence that proves the existence of Lyme in a persistent and chronic state—both for patients who have been treated and those who suffered years with no accurate diagnosis, and therefore no treatment.
If Lyme disease was as simple to cure as Mandavilli purports, then how does she explain a recent study that estimates the number of people suffering from post-treatment Lyme disease to possibly exceed two million by 2020.
Here are just a few research studies conducted at top universities and published in top peer-reviewed journals that Mandavilli should read prior to her next piece on Lyme disease:
GLA submitted a letter to the editor of The New York Times in response to Mandavilli’s article; we are still awaiting acknowledgement of the letter and the Times’ intent on publishing it.
Thanks to Forbes for their thoughtful rebuttal to the Times article.
If you or someone you know is suffering from Lyme or other tick-borne illness, let us know how GLA can help. Patient resources range from help finding a Lyme specialist to our new Lyme Link peer-to-peer mentor program.
Guest Point of View: John Aucott, M.D., Director of the Johns Hopkins Lyme Disease Clinical Research Center; Associate Professor of Medicine, Johns Hopkins University School of Medicine
In a recently published study, the authors* estimate the cumulative number of post-treatment Lyme disease (PTLD) cases in the United States in both 2016 and 2020. This is important because it represents the first time that researchers have attempted to estimate a downstream effect of infection with Borrelia burgdorferi; the number of people living with PTLD. Their results suggest that the predicted prevalence of PTLD by the year 2020 could be as high as 1,944,189, depending on the assumptions used.
The magnitude of this result points out the major public health impact of the unchecked tick-borne disease epidemic.
It has long been challenging for researchers to estimate the number of new cases of Lyme disease, let alone the rate of PTLD. A number of assumptions and estimations need to be made to generate a mathematical model with as much accuracy as possible. Therefore, the underlying assumptions used in this paper are extremely important, as they directly determine the results. This is illustrated by the wide range of predicted cases for 2020; estimated cases range from 81,509 to 1,944,189 cases, over a 20-fold difference. The first key assumption needed to create the model is the number of new cases of Lyme disease each year (i.e. the incidence). Data reported to the CDC on the yearly incidence of Lyme disease are widely assumed to be under-reported due to passive surveillance methods. Estimates derived from laboratory testing and health claims records all point to an annual incidence in the hundreds of thousands of cases a year. Furthermore, it is difficult to precisely estimate how this rate may change over time due to a range of factors such as climate change, seasonal variation, expansion of the tick vector, and/or increased public awareness of the disease. The authors included three different scenarios to account for this variability.
A more difficult assumption to pinpoint mathematically for inclusion into the model is the rate used for estimating the percentage of patients who develop chronic illness after receiving standard antibiotic treatment, partial treatment, or no intentional antibiotic treatment of Lyme disease. In prospective studies of both early Lyme disease and late Lyme arthritis the percentage of patients who experience ongoing symptoms after antibiotic therapy is approximately 10%. The 10% rate in these studies among ideally diagnosed and treated patients may underestimate the rates found in the community practice of medicine, where delayed diagnosis and imperfect and delayed treatment may be more common. The rate may also be higher in early disseminated Lyme disease with neurologic involvement, which has not been studied extensively in North America, and thus may be under-represented in estimates of PTLD. The authors incorporated two different PTLD rates (10% and 20%) to account for the uncertainty in this estimation.
There are additional assumptions that may have been important to add to the model. First, this study does not account for patients who recover from PTLD over time and no longer suffer from the disease. In the current model, survival and death rates, but not recovery, are accounted for as long-term events. Second, there is no attempt to include different PTLD risk percentages for children who, some have suggested, may have a lower rate of PTLD compared to adults. The absence of these different rates in the model may lead to an over estimation of the number of cases of PTLD.
These limitations should not detract from the importance and relevance of this novel research. The fact that the number of cases of chronic illness related to Lyme disease, as estimated by published rates of PTLD, is so high is extremely important.
These numbers are on par with other important public health threats such as HIV. When combined with the recognized severity of PTLD for patients, the impact is even more significant.
Another important result of this study is the estimated future age distribution of PTLD cases. As the US population ages, the impact of PTLD on older Americans with other co-existing, chronic, conditions may become an important, unrecognized, public health issue. It is unknown how PTLD may interact with or alter the progression of common conditions such as dementia. It will be extremely difficult to tease out the role of prior Lyme disease as a cause or an aggravating factor without molecular markers of central nervous system infection and/or ongoing inflammation in the setting of PTLD.
In conclusion, this study is extremely relevant in understanding the important public health significance of chronic illness related to Lyme disease.
The methodologies used and the magnitude of the findings should inform future epidemiologic studies of disease risk and population-level impact. As research in Lyme and other tick-borne diseases advances and more exact estimates of the model assumptions used in this paper are generated, it will be important for future studies to revisit these calculations, as well as strive to estimate the long-term impact of other tick-borne diseases, including Babesia microti and Borrelia miyamotoi. Finally, this paper should serve as another wake up call to leaders in the public health, medicine, and policy arenas regarding the impact of the expanding tick-borne disease epidemic.
*About study authors: Allison DeLong, M.S., a biostatistician at Brown University’s Center for Statistical Sciences and a member of GLA’s Scientific Advisory Board; Mayla Hsu, Ph.D., Director of Research and Science at GLA; Harriet Kotsoris, M.D. former CSO, GLA
Opinions expressed by contributors are their own.
John Aucott, M.D., is Director of the Johns Hopkins Lyme Disease Clinical Research Center; Associate Professor of Medicine, Johns Hopkins University School of Medicine. Learn more at https://www.hopkinslyme.org/
Dr. Aucott is a GLA research grantee, and co-director of the landmark Study of Lyme Immunological and Clinical Events (SLICE) Study that has defined many parameters of acute and long-term Lyme disease.
GLA Note: About the term “PTLD”: The term post-treatment Lyme disease syndrome (PTLDS) refers specifically to the 10-20% of patients who were diagnosed and treated at the acute stage of their Lyme infection, yet continue to remain sick and symptomatic. Using this term is not intended to exclude anyone suffering from long-term or persistent infection. In context for this research project, it’s critical to start with a well-defined group, such as PTLDS, for study validation purposes. Due to the inaccuracies in Lyme diagnostic testing, at all stages of the disease, it’s nearly impossible to determine the entire population at this point in time. We fully acknowledge that there are more Lyme sufferers outside of the “PTLDS” category, and it’s our goal to find the answers that will help all these patients. The positive outcome of this study is that we now have a starting point to share with the medical and general communities about the substantial number of people who are suffering in the U.S. as a result of Lyme disease.
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 JOHNS HOPKINS BLOOMBERG SCHOOL OF HEALTH
A Global Lyme Alliance (GLA)-funded investigator, Valeria Culotta, Ph.D. (Department of Biochemistry and Molecular Biology, Johns Hopkins Bloomberg School of Public Health), and her research group recently published an entirely unexpected finding regarding how our immune system protects us against invading pathogens. Transition metals such as manganese (Mn), zinc (Zn), copper (Cu), and iron (Fe) are essential micronutrients for virtually all living organisms. Yet these same metals are potentially toxic, and the host exploits this “double-edged sword” by either attacking pathogens with high/toxic levels of metals or by starving the invading microbe of metal micronutrients through a process called nutritional immunity. Nutritional immunity is one of several defenses our body mounts against pathogens like Escherichia coli. A key protein involved in nutritional immunity is calprotectin, a potent antimicrobial that inhibits the growth of pathogens by tightly binding Mn and Zn thus preventing microbial growth.
Borrelia burgdorferi, the bacterial spirochete causative agent of Lyme disease, is rather unique in the bacterial world and with regard to metal biology in that it has no requirement for Cu or Fe. In contrast, B. burgdorferi does accumulate high levels of Mn through at least two uptake systems and Mn acquisition is essential for virulence, the bacterium’s ability to cause disease. The study by Angelique N. Besold and co-workers, published in the Royal Society of Chemistry journal Metallomics, shows that calprotectin is produced in the skin of Lyme disease patients by both keratinocytes of the epidermis and immune cells infiltrating the dermis, including macrophages. Thus, you might think spirochete growth would be inhibited through sequestration of Mn by calprotectin. On the contrary, what is remarkable and entirely unexpected is that, unlike with other bacteria such as E. coli, calprotectin does not inhibit growth of B. burgdorferi by restricting uptake of Mn or Zn. Instead, the mechanism of growth inhibition appears to require physical association of calprotectin with the bacteria. Though the exact mode of action needs to be determined, the importance of this finding derives from the fact that this novel means of blocking spirochete growth might aid in the identification of small molecule compounds that could mimic the effect of calprotectin, and thus have therapeutic benefit in the treatment of Lyme patients. An alternative to treatment with traditional antibiotics is desperately needed since as many as 20% of Lyme patients can develop Post-Treatment Lyme Disease Syndrome, of which antibiotic-resistant Lyme arthritis is one form.
Collectively, the results outlined in this new GLA-funded study provide evidence for the first time that calprotectin can inhibit bacterial growth without starving the microbe of essential metals. The capacity of calprotectin to act as an antimicrobial is indeed complex and, depending on the microbe and host niche, circumstances beyond nutritional immunity should be considered. Future studies will explore how this novel killing mechanism might be exploited for therapeutic benefit. Such efforts are consistent with GLA’s goal of expanding the repertoire of treatment options available to physicians treating an ever-expanding number of Lyme disease patients.
MEET THE RESEARCHER IS A BLOG SERIES TO INTRODUCE GLA-FUNDED LYME DISEASE RESEARCHERS MAKING A DIFFERENCE IN THE FIGHT AGAINST LYME DISEASE.
NAME: Ying Zhang, M.D., Ph.D.
TITLE: Professor at Department of Molecular Microbiology and Immunology
INSTITUTION: Johns Hopkins Bloomberg School of Public Health
Dr. Zhang’s research interests are focused on antibiotic resistance, bacterial persistence, and development of more effective treatments for a wide variety of persistent bacterial infections, including tuberculosis (TB). His group has identified persistence mechanisms in important bacterial pathogens including M. tuberculosis, E. coli, S. aureus, and Borrelia. In addition, his group identified genes and pathways important for L-form bacteria formation. Recently he has been working on the challenging problem of persistent Lyme disease. Dr. Zhang’s group has identified a variety of FDA-approved drugs as well as some essential oils that are more effective in killing Borrelia burgdorferi persisters in vitro than the current Lyme antibiotics. Thanks in part to a GLA-funded grant, and in collaboration with colleagues, his group is evaluating promising drug candidates, including drug combinations and active essential oils in animal models for more effective treatment of Lyme disease and its co-infections.
GLA: What motivated you to focus on Lyme and tick-borne disease research?
YZ: In 2009, we published a paper on the molecular basis of E. coli L-forms (a type of persister bacteria), when I got a call from GLA’s Chairman Rob Kobre asking me for help with persistent Lyme disease. Rob asked me if I would be interested in studying Borrelia L-forms as persisters that may be related to persistent Lyme disease. I said yes, and the rest is history.
As I learned more about the great suffering caused by chronic Lyme disease, also known as Post-Treatment Lyme Disease Syndrome (PTLDS), that so far has no cure, I became more attracted to the mysterious features of the spirochete bacteria and its ability to cause persistent infections. It is an important aspect of the scientific challenge that has eluded us so far. Seeing so many people suffering from such a horrible disease has motivated me to find a more effective cure for chronic Lyme.
GLA: What discovery has been most gratifying?
YZ: The most gratifying discovery is the identification of Borrelia persister drugs and mechanisms and the persister drug combination approach that more effectively eradicates Borrelia persisters in vitro. We are currently testing different drug combinations in vitro as well as in vivo in animal models. Moreover, we found some essential oils such as oregano, cinnamon bark, and clove bud, and garlic to be highly active against Borrelia persisters and especially against biofilm forms. The active essential oils are very interesting as they are natural products. However, in vivo testing including the dosing schedule, PK, and toxicity and efficacy in killing Borrelia in animal models will have to be done properly before subsequent human studies. I understand some patients are very sick and are desperate to try these on an anecdotal basis. Nevertheless, proper clinical trials will have to be conducted. In addition, we are working on a project that evaluates Borrelia persister antigens for improved diagnosis of Lyme disease, and preliminary results look encouraging.
GLA: Are you confident we’ll find a cure?
YZ: First, “cure” is a relative term. Because of the heterogeneity and complexity of PTLDS, it is challenging to develop a regimen that will be effective for all such patients. However, based on encouraging in vitro data and the persister drug PZA principle as exemplified in TB treatment, more effective drug combinations for persistent Lyme disease will be developed. This means that at least some segments of persistent Lyme patients can be cured more consistently. However, funding for evaluating drug regimens and for new clinical trials is critically needed. In addition to persister drug regimens, host directed therapy (HDT) improving host immune function will also be important for a more effective cure. We are at a critical juncture and are encouraged by recent interest from the U.S. Department of Health and Human Services in Lyme disease. So I would say to chronic Lyme sufferers, do not give up! There is hope.
GLA-funded research grants with Dr. ZHANG include:
“High Activity of Selective Essential Oils Against Borrelia persisters” (2017-18)
“Persister Antibodies in PTLDS Patients?” (2016-17)
“Optimal Drug Combinations Targeting Bb Persisters for Improved Treatment of Lyme Disease” (2015-16)
“Targeting Dormant Bb Persisters for Improved Treatment of Chronic and Persistent Lyme” (2013-14)
“Identified Borrelia burgdorferi L-form specific Proteins (ie: Persisters) for Development of New Diagnostics, Vaccines and Also Drugs Targeting L-Form Borrelia” (2011-12)
Persister Mechanisms in Borrelia burgdorferi: Implications for Improved Intervention. Emerging Microbes & Infections Jie Feng, Wanliang Shi, Shuo Zhang, Zhang Y (2015)., 4, e51; doi:10.1038/emi.2015.51 https://www.nature.com/articles/emi201551
Eradication of Biofilm-like Microcolony Structures of Borrelia burgdorferi by Daunomycin and Daptomycin but not Mitomycin C in Combination with Doxycycline and Cefuroxime Jie Feng, Megan Weitner, Wanliang Shi, Shuo Zhang, and Zhang Y (2016).. Frontiers in Microbiology, doi: 10.3389/fmicb.2016.00062. https://www.frontiersin.org/articles/10.3389/fmicb.2016.00062/full
A drug combination screen with FDA-library drugs identifies agents active against amoxicillin-induced round bodies of Borrelia burgdorferi persisters Jie Feng, Wanliang Shi, Shuo Zhang, David Sullivan, Paul G. Auwaerter, Zhang Y (2016. Frontiers in Microbiology, 23 May 2016 http://dx.doi.org/10.3389/fmicb.2016.00743
Ceftriaxone Pulse Dosing Fails to Eradicate Biofilm-like Microcolony B. burgdorferi Persisters Which Are Sterilized by Daptomycin/Doxycycline/Cefuroxime without Pulse Dosing Jie Feng, Shuo Zhang, Wanliang Shi, and Zhang Y (2016).. Frontiers in Microbiology, 04 November 2016 http://dx.doi.org/10.3389/fmicb.2016.01744
Selective Essential Oils from Spice or Culinary Herbs Have High Activity against Stationary Phase and Biofilm Borrelia burgdorferi Jie Feng, Shuo Zhang, Wanliang Shi, Nevena Zubcevik, Judith Miklossy, and Ying Zhang (2017).. Front. Med., 11 October 2017 | https://doi.org/10.3389/fmed.2017.00169
Click here to see GLA’s Research Report, detailing GLA’s research accomplishments
Reprinted with the permission of itslyme.com
With modeling, I was on my feet 8-12 hours a day on jobs or running from casting to casting, and was under severe pressure from my agents to look a certain way. I quickly began having symptoms again…
As an active kid growing up in New England, I was often playing outdoors behind our house, in parks, and on the soccer field. One morning in 2003, at age 10, I woke up at my aunt’s home in New Hampshire with a sore spot on the back of my head. I couldn’t remember bumping it, and it didn’t hurt enough to mention that day. Two days later, my head was still sore. My aunt took a look, and noticed there was a tick embedded just above my hairline. The tick was extracted with a pair of tweezers, and nothing else was done.
For the most part from age 10-14, I was a normal, healthy kid. I hardly caught colds, and besides a broken arm or visiting my RN mother at work, I was rarely in hospitals. At age 14, I attended my first “Snow Ball”, our version of prom. About 40 minutes in, I had a nosebleed, blacked out, and then subsequently began vomiting. I was then taken home by a family friend, as it appeared as though I had been drinking – I had not. Having no other symptoms in the days following, no other treatment was sought.
At age 15, in addition to dance classes three nights a week, I decided to join the track team. During three out of my first five practices, I blacked out and vomited. I was taken to a family doctor, who diagnosed me with a “sodium deficiency” as all my blood tests came back normal, but my sodium levels were slightly on the low side. The treatment? Eat more pepperoni and ramen noodles before track.
At age 17, I had started my senior year and had taken on a lot as Peer Leaders President, Student Council Vice President, Key Club Member, a High Honors student with two AP classes, and attending dance classes four nights a week after school. In November, I had suddenly felt weak after school one day. I called my dance studio to let them know I would not be coming, and instead went home and got into bed. I did not get out of bed for one week due to exhaustion, sore throat, weakness, dizziness, and headaches. When I decided to return to school the following week, I ended up blacking out and vomiting again. I was taken to the hospital to have tests done and an IV of fluids. All of my blood tests came back normal, with the exception of a mildly positive Epstein Barr Virus test. So when the speculation came down to anorexia, depression, attention seeking or EBV… EBV it was.
I had even more symptoms added into the mix… inability to stand for more than a few minutes without fainting…being the most compromising living in New York.
I was allowed to do the majority of the remainder of my senior year working from home and by graduation I had been feeling much better and therefore decided to continue with my plans to move to NYC for college the following autumn. As fun and exciting as NYC was, my health quickly declined- nausea, vomiting, dizziness, and headaches returned along with one new symptom: joint pain. When I was home for winter break, I was taken to doctors again for another round of testing. This time, the word “Lyme” had been mentioned. Sure enough, my Lyme disease test came back positive and I was immediately put on two months of Doxycycline. I began to feel much better, and more like my normal self. So much so, that I took it to the extreme and decided it would be wise to enter myself into the New York party scene. I did this for six months, and have never fully recovered.
By the time I saw Chronic Lyme Disease Researcher + Specialist, Dr. Kenneth B. Liegner in 2012, I had even more symptoms added into the mix: tremors, brain fog, muscle twitching, depression, and the inability to stand for more than a few minutes without fainting. The latter being the most compromising living in New York. After an additional positive Lyme test, as well as positive tests for Babesiosis and arthritis, Dr. Liegner started me on continuous oral antibiotics (I haven’t stopped taking them since), and a few months later an 8-week stint of IV Rocephin. Both treatments had me feeling back to (almost) normal. I then chose another industry which was detrimental to my health: modeling.
With modeling, I was on my feet 8-12 hours a day on jobs or running from casting to casting, and was under severe pressure to look a certain way. I quickly began having symptoms again but was determined and thus continued to work. After two years, I was back needing to receive IV’s again & began seeing a new Lyme specialist closer to my parent’s home. Dr. Richard J. Dubocq did everything in his power to allow me to continue my modeling dreams. He understood I was going to do it anyway, so he might as well help me to accomplish it! He began to not only treat me with oral antibiotics but also with other medications to help with the symptoms I was experiencing. I began to feel better again, but with the physicality of working both in NY and Europe, I need another boost of IV antibiotics and another six-month rest before returning to modeling again.
I lasted 8 more months. During the February fashion week of 2015, my neuropathic symptoms got so bad that by the end of six days of shows, I had trouble walking, difficulty finding words, insomnia, minimal short term memory, and had a droop on one side of my face. This led me to once again, return home for rest and treatment. I finally decided enough was enough, and quit modeling for good. Six months later, I felt well enough on my oral antibiotics to begin working again. I took a part time job as a front desk associate at a spa near my apartment. As I began to improve and take on more, I had the ability to move up throught the company. Two years later I am the spa director for the location working 45-50 hours a week, and feel well enough to take a couple dance and fitness classes per month.
I still have symptoms, but am able to manage them and live a pretty full life, even though it is not the life I intended to have. After having Chronic Lyme Disease for fourteen years, and only being treated with antibiotics for the last seven, I will most likely never be “normal” again, but I am proud of myself and so thankful to my family, friends, and doctors for getting me this far.
Kelly’s Symptom Breakdown:
First onset Lyme symptoms: Dizziness, fatigue, severe headaches, sore throat, vomiting, blackouts.
Recall tick bite/bullseye rash: yes; not that I know of.
Diagnosis before Lyme disease: Sodium Deficiency, Epstein Barr Virus
Chronic Lyme disease symptoms: Headaches, extreme fatigue, facial paralysis, tingling sensations, stuff neck, swollen glands, sore throat, twitching of muscles, eye floaters, extreme menstrual symptoms, buzzing in ears, nausea, vomiting, night sweats, costochondritis, shortness of breath, mood swings, depression, anxiety, numbness in body, stabbing sensations in legs, weakness, tremors, difficulty walking, difficult finding words and forming sentences, forgetfulness, memory loss, and rashes.
Lyme disease & co-infections diagnosed by: Persistent symptoms, Western Blot blood test.
Kelly is still being treated with oral antibiotics for Chronic Lyme, Babesiosis, and Bartonella, but hopes to soon be able to decrease antibiotics and supplement with herbal and homeopathic remedies.
There is a difference between chronic fatigue and feeling tired. Have you developed chronic fatigue as a result of your Lyme disease?
I remember the moment when my husband said, “I get it,” and I knew he did. It was the time he’d developed an acute bladder infection and was stricken with a high fever. I had to go to work, so he took himself to urgent care. Later that evening he said, “I think I was putting on a show at the doctor’s office, I probably didn’t even seem sick. Then, as soon as I got home I completely crashed. I haven’t moved from this chair since.” That was it. The feeling I’d been trying to describe to him for years. It’s like using every last bit of adrenaline to get through a show, only to immediately collapse in the wings afterward. He could finally understand what I go through on a daily basis.
Everyone can relate to what it feels like to be tired. There are a million things to do and never enough time in the day. We stay up too late, clinging to the few hours we’re not working, and then slog through the morning fueled by cups of coffee.
Chronic fatigue—a common symptom of Lyme—is completely different. Chronic fatigue is a medical diagnosis and cannot be healed by a good night’s sleep and a day without commitments. It is there when you wake up, there with you all day long, and there when you fall asleep. Chronic fatigue presents differently in every person. Here are a few perspectives from others in the Lyme community:
“I feel like I am walking around with weights attached to my body.”
“The fatigue is like every little thing that you need to do, like say fold laundry, that would take a healthy person a half hour, takes a person with Lyme hours. We have to rest in between. I actually spend more time resting up to do something, than actually getting it done.”
“Not quite up to starting the big game, but the big game is every day.”
“Feeling like you have been hit by a train or have a terrible case of the flu and are incredibly weak and tired, and that you can only get off the couch or out of bed with a huge effort. It is hard to think straight and nearly impossible to get anything done.”
“It feels like you just finished running a marathon that you hadn’t trained for…and at the end of the marathon, you also got the flu and also got struck by lightning, which caused everything in your body to shut down.”
My available energy comes and goes in cycles, and sometimes it’s difficult to know how much energy I will have to spare. This is especially true in social situations, which seem to be the most draining. One day, I had the energy to go out with friends. I felt great, better than I had in months. We got Mexican food and talked for hours. We were joking and laughing so much, I almost forgot about my illness. I thought, I must be getting better, I haven’t had this much stamina in months. When I went to sleep my spirits were high.
Then I woke up and I couldn’t get out of bed for two days.
This is the difference between chronic fatigue tired and just being tired. There is a limit to what a person can do, and when they overdo it, it takes days to get the energy back just to take a shower. This was the feeling I found so hard to describe to my husband, which he finally understood when he got a serious infection.
Some Lyme patients are wheelchair bound, or spend months or years confined to a bed. I am fortunate in that, as long as I don’t run myself into the ground, my bouts of fatigue last only two to three days. I can’t imagine what it is like to go days on end and never feel the energy to get out of bed, but that’s the harsh reality for many Lyme patients.
It’s hurtful and invalidating when people compare chronic fatigue to just being tired. Lyme patients’ fatigue is caused by our bodies constantly fighting off illness, then on top of that we have to do everything else other people do on a regular day. We get so used to it, we forget what it feels like to be normal.
Next time, when you’re discussing your chronic fatigue and someone says, “I’m tired, too,” politely remind them it may sound like the same thing, but there is absolutely no comparison.
Opinions 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.