Fibromyalgia — Latest Stories — Pain News Network
What It's Like To Live With Neurologic Lyme Disease: A Patient Perspective
Lyme Disease Awareness Month runs throughout the month of May. It is a month that helps increase awareness and improve efforts on how to reduce the burden of the disease for patients. Approximately 15% of patients with Lyme disease will develop Lyme neuroborreliosis, or neurologic Lyme disease,1 which is an infectious disease that affects the central nervous system (CNS). It can be challenging for patients with neurologic Lyme disease to be diagnosed, especially if they do not present with typical symptoms.
For Maria Arini Lopez, it took her almost 2 years to be accurately diagnosed with neurologic Lyme disease. Looking back, Lopez considers herself one of the more fortunate patients, as she recalls learning that it can take more than 2 years to receive an official Lyme disease diagnosis. Lopez, who lives in central Maryland, shared that her COVID-19 pandemic hobby — gardening — was most likely the culprit of her infection in the spring of 2021.
She did not experience any of the tell-tale signs of Lyme disease, which includes the "erythema migrans" rash – often characterized by its "bull's eye" appearance. Lopez admits that her unusual symptoms made it challenging for clinicians to diagnose her with Lyme disease. This led to her extraordinarily complicated diagnostic journey.
To better understand what it's like to live with neurologic Lyme disease and how clinicians can improve diagnosis and alleviate disease burden for patients, Lopez recounts her experience from her gradual onset of symptoms to receiving an official diagnosis and how the disease has impacted her daily life.
"
If patients present with inexplicable or atypical symptoms and happen to live in a Lyme-endemic region, testing for Lyme infection may be well worth the effort.
Take us through your experience of being diagnosed with neurologic Lyme disease. What did your clinicians do well? Did you have any poor experiences?Lopez: I had dramatically varied experiences with 8 different clinicians, including a primary care physician (PCP), optometrist, dentist, otolaryngologist, urogynecologist, rheumatologist, neurologist, and an integrative medicine physician.
I first saw my PCP in early July 2021 for an annual physical and full workup. I expressed feeling concerned that something was just not right. I was having trouble sleeping and felt depressed. I was also a lot more fatigued than usual.
The PCP dismissed my basic labs (complete blood count, metabolic panel, and urinalysis) as 'normal,' and told me that I was 'doing okay,' despite my communicating that I was struggling. My PCP confirmed that I had a urinary tract infection (UTI), another urgent care provider gave me antibiotics, and I was sent on my way.
My eyes and mouth became very dry, to such a degree that I began to think it might be Sjogren syndrome or some other autoimmune disease. Several years ago, I had been diagnosed with dry eye and had been faithfully following the dry eye regimen recommended by my optometrist, but it was no longer effective. I had the lowest grade for the dry eye testing thanks to the regimen I was prescribed. Now, I had confirmed grade 3 staining, despite following the same regimen. Based on all my symptoms, she agreed that something systemic was going on, and that further testing was now necessary.
When I went to my dentist for my biannual cleaning, I told her about the abnormal sensations, or lack thereof in my lips and tongue, as well as the strange itching in my ears, and she acknowledged my suspicion that I might have Sjogren syndrome. She stated that compared with other patients she knew who had Sjogren syndrome, I had more saliva in my mouth, so she did not think it was the likely culprit, but that it might be worth ruling out. She highly recommended that I see an ear, nose, and throat (ENT) doctor.
The ENT doctor who I saw was extremely thorough. She ordered brain magnetic resonance imaging (MRI) to check for anything that may have been affecting the cranial nerves. Although the MRI was negative, it still ruled out certain outcomes. She also diagnosed me with ear eczema and prescribed a steroid cream and steroid ear drops for both ears. These medications helped immensely with the itching and flaking; however, they did not resolve the underlying discomfort, occasional sharp pain, and lack of flexibility in the cartilage of my right ear.
The ENT recommended I see a rheumatologist to completely rule out Sjogren syndrome and other potential autoimmune conditions, such as multiple sclerosis (MS). The rheumatologist was wonderful! She listened carefully to my medical history and immediately ran a series of more in-depth serological tests for a variety of autoimmune and rheumatic conditions that could possibly explain my symptoms. All of these tests, however, were negative.
What were some notable symptoms you were experiencing throughout your diagnostic journey?Lopez: Cognitive deficits became apparent, including short-term memory loss, severe brain fog and lack of clarity when thinking, slower processing speeds, and impaired executive function. What used to take me 30 minutes to complete now took hours. I no longer worked as a physical therapist, and symptoms were severely impacting my daily function and work as a freelance medical writer.
Other notable symptoms included daily headaches, neck stiffness, intermittent dizziness and vertigo, severe fatigue and flu-like symptoms, mood disturbances, and whole-body flushing similar to hot flashes that would last up to 30 minutes or longer. My right knee joint began to feel swollen and arthritic. As a manual physical therapist, I had worked for a decade in outpatient orthopedic settings with individuals with knee osteoarthritis and rheumatoid arthritis, so I knew what an arthritic knee felt like to the touch.
I finally turned to a neurologist. After listening to the timeline of my symptoms, he thought of 2 potential explanations. I either had a vitamin B12 deficiency that was contributing to what he called "subacute combined degeneration of the spinal cord," or there was something of a systemic and infectious nature, possibly viral, that was impacting my neurologic function. He prescribed sublingual B12 along with folic acid and B2 supplementation for 3 months to see if my neurologic symptoms improved. If not, he would investigate possibility that it was an infectious disease.
What happened at the 3-month mark?After 3 months, the supplements had not improved my symptoms, and my health continued to deteriorate. I was preparing to undergo a lip biopsy in January 2022 to see if Sjogren syndrome was the answer. The ENT doctor mentioned that sometimes blood tests did not always effectively rule out Sjogren syndrome, but that a biopsy would be a definitive next step in the diagnostic process.
I read a story about a patient's experience with an integrative medicine doctor in Northern Virginia. I knew in my gut that I needed to schedule an evaluation with this doctor, or someone else at his practice. On the day I was scheduled for my lip biopsy, I cancelled my appointment and scheduled a virtual telemedicine visit with the integrative medicine specialist. By this time, I was fatigued to the point that traveling any distance took maximal effort.
After listening to my lengthy story, which I had now told upwards of 8 times, the integrative medicine doctor wrote a referral for me to undergo 52 blood tests, including a genetic test called GENIE, as well as the line blot serum tests for Lyme disease. On February 9, 2022, I finally found out that I had an active Lyme infection with Borrelia burgdorferi.
According to LabCorp, diagnosis of Lyme disease using Western blot testing requires positivity of 1 of the following 2 patterns:
My results indicated an IgM-positive pattern, reading:
Although it may have provided more detailed information to definitively confirm a Lyme neuroborreliosis diagnosis, I never underwent cerebrospinal fluid (CSF) analysis, which experts recommend in addition to serological testing.1,2
What did your clinician do well during your original diagnosis?The integrative medicine specialist immediately started me on oral doxycycline. He provided me with extensive background information on the Herxheimer response, preparing me for the possibility that I may feel worse before I felt better. He also prescribed a substantial number of oral supplements to help my body better cope with the die-off and detoxification process. I received an email with a detailed explanation as to each supplement's purpose and how I was to take them.
After 4 months of treatment with antibiotics and supplements, the Lyme bloodwork was now negative, with only one band (Borrelia burgdorferi 41kD Ab.IgG) showing up as positive.
Fast forward to April 2024, although I completed a successful antibiotic, my sensory paresthesia throughout my body began to worsen again. I underwent additional neurologic testing, including nerve conduction velocity and electromyography testing for upper and lower extremities, a brain MRI without contrast, and complete spinal MRIs with and without contrast.
According to my neurologist, although my large nerve fiber axons seemed mostly intact, Lyme infection has the potential to trigger onset of small fiber neuropathy, contributing to my chronic, widespread skin sensory disturbances as well as several autonomic signs and symptoms, including:
These symptoms can flare up again during an acute viral or bacterial infection. A skin biopsy will be necessary to confirm the diagnosis of small fiber neuropathy. Regardless of the final diagnosis, I learned that Lyme disease can affect not only the CNS, but the peripheral nervous system too.
What do you want clinicians to take away from your experience with neurologic Lyme disease?Active listening to the whole story in its entirety is critical and medical gaslighting happens, even to other health care providers, and it is unacceptable. Our symptoms and stories are valid, and they should not only be believed, but taken seriously to avoid potentially permanent neurologic deficits.
It is understandable that health care providers can be limited by their scope of practice or area of specialization, but they should never be limited in terms of referring their patients to a specialist or provider who they think might be able to find answers and provide solutions. These recommendations often lead the patient in the right direction and at the very least do not leave them hanging without answers or effective treatment. Continuity of care matters.
Also, not every patient will present with a history of a tick bite or an erythema migrans rash. These patients may experience progression of concerning symptoms that can mimic other conditions, complicating accurate diagnosis and enabling an acute, early-stage Lyme infection to transition into a chronic, late-stage infection that pervades multiple body systems, including the central nervous system, joints (especially the knees), and heart.
If patients present with inexplicable or atypical symptoms and happen to live in a Lyme-endemic region, testing for Lyme infection may be well worth the effort.
Thank you to all the health care providers that listen, believe, and actively seek answers without giving up. You give patients like me hope for a better future.
Editor's Note: This interview was edited for clarity and length.
This is the second article in a 2-part series on Lyme disease. The first article Lyme Neuroborreliosis: Expert Shares Key Insights on Diagnosis, Treatmentis available here.
Lyme Disease Is Spreading. Why Don't We Have Drugs To Stop It?
Q: Every three months, I give my dog a beef-flavored chew that kills any ticks that bite her. She has also been vaccinated against Lyme disease. Why don't these options exist for people?
"It's funny, in Lyme disease, animals have so many more options than humans do," said Dr. Linden Hu, a professor of immunology at Tufts University School of Medicine. That includes several Lyme vaccines, as well as oral and topical tick-prevention medications.
Safety concerns and doubts about public acceptance have hindered the development of these types of drugs for people. But with rates of Lyme and other tick-borne illnesses increasing in recent years, researchers are exploring new (and old) options, and a few are now being tested in human clinical trials.
Between 1999 and 2002, there actually was a human vaccine for Lyme disease available in the United States. The drug, called Lymerix, was approved by the Food and Drug Administration in 1998 after clinical trials deemed it safe and effective for preventing infection with Lyme-causing bacteria. It was recommended for people between the ages of 15 and 70 who were living or working in areas where Lyme disease was common.
Shortly after people started receiving the shots, reports of side effects emerged, most notably symptoms of arthritis. Federal health officials "looked at it very carefully" and didn't find evidence that the vaccine was unsafe, said Dr. Erol Fikrig, an infectious disease expert at the Yale School of Medicine, who was involved with developing the drug.
But the reputational damage had been done. Sales of the Lyme vaccine plummeted, and in 2002, GlaxoSmithKline, which manufactured the drug, pulled it from the market.
We are having trouble retrieving the article content.
Please enable JavaScript in your browser settings.
Thank you for your patience while we verify access. If you are in Reader mode please exit and log into your Times account, or subscribe for all of The Times.
Thank you for your patience while we verify access.
Already a subscriber? Log in.
Want all of The Times? Subscribe.
For Chronic Lyme Patients, Every Day Can Be A Struggle
It was bad enough that Amy Wiester of Bell Township contracted Lyme disease at age 6 after suffering a tick bite at her family's farm.
But Wiester, 36, was bitten twice more by Lyme-carrying ticks, in 2004 and 2018.
The disease — and the co-infections that frequently accompany it — have dominated the past three decades of her life.
"I never really had treatment (for the initial infection)," Wiester said. "I was one of five children, and I was the 'sick kid.' "
Her worst symptoms were similar to those of a stroke.
"I had neurological Lyme," she said. "I would have numbness that would go up my arm and spread to my lips, nose and eyebrow. I would always tell my doctors I had a tick bite and a bull's-eye when I was little, and it was just never addressed."
While attending college in 2004 at Penn State, Wiester was bitten again and developed the classic bull's-eye rash. She was placed on a 21-day antibiotic cycle, but it did not help.
"Things started to get worse around then," she said. "One morning I lost my vision around 6 a.M. And I had nausea for about three years straight."
In 2012, Wiester began seeing a nurse-practitioner who specialized in Lyme cases and finally received a Lyme diagnosis.
"We also found out I had seven co-infections," she said. "I was in treatment for about five years, and I was almost in remission."
In May 2018, Wiester — who lives at the edge of a large forested area with plenty of places for ticks to thrive — was bitten again, and "it has full-blown wrecked me," she said.
"I had a whole plethora of issues: dizziness, my heart would pound just from getting up and down, and I had full-body pain that was so bad I thought I would need opioids," she said.
Wiester began taking intravenous antibiotics and today has a peripherally inserted central catheter to administer medication, but her symptoms have progressed to a point where it is difficult for her live a normal life, as well as care for her 5-year-old son, who has also begun to present symptoms of both Lyme and some of its co-infections.
"Being debilitated myself most days, and now with him down-sliding, it's giving me the will to do what it takes to get better, to be able to give him a fighting chance," she said.
In seeking support, Wiester came across the PA Lyme Resource Network where she met Bill Moore, the network's vice president.
Moore believes he contracted Lyme disease in 2009 but had a similar problem in getting a proper diagnosis.
"Twenty-three doctors later, I got a diagnosis in 2012," Moore said. "Things started with symptoms you could chalk up to something else, like a mild flu. I think doctors are getting more knowledgeable, but almost none of them thought it was Lyme."
Moore said the network exists to guide patients "toward more Lyme-aware doctors," so that situations like his and Wiester's are not as common.
Wiester drives four hours to see a doctor she feels comfortable with.
"With the exception of a few practitioners that are helping more of the less-severe cases in this area, you have to travel far," she said.
An affordable solution
Wiester's friend Kelly Smith said she is a "Lyme warrior."
"Amy always managed to push through the days with little complaints," Smith said. "That all changed when she was bit in the summer of 2018."
In order to help Wiester with her substantial medical bills — paid largely out-of-pocket — Smith is organizing a Sept. 22 spaghetti dinner at the Parks Township Fire Hall in Armstrong County.
The prevalence of Lyme in Pennsylvania, and the high cost of combating it, has gotten the attention of state lawmakers.
The state House passed House Bill 629 in April. Currently in the Senate's Banking and Insurance Committee, the bill would mandate insurance coverage for "long-term antibiotic and antimicrobial therapy for a patient with Lyme disease and related tick-borne illnesses when determined by a health care practitioner to be medically necessary … after making a thorough evaluation of the patient's symptoms, diagnostic test results or response to treatment."
It would also protect doctors who want Lyme patients on long-term antibiotics, a move that Moore said is critical when it comes to treating the disease.
"Doctors will prescribe a 21-day course of antibiotics," Moore said. "But often they won't prescribe a longer course, and there have been doctors in New York disciplined for doing that."
Long-term antibiotic use does pose a risk, Moore said, "but Lyme is a complex illness, so why deny a person that treatment and allow them to develop a chronic illness?"
Wiester is seeking a potentially permanent solution overseas.
"I want to go to Germany for a hyperthermia treatment that just doesn't have the support behind it in the U.S.," she said.
The St. George Hospital, run by Dr. Friedrich Douwes in Bad Aibling, Germany, offers treatment using a combination of antibiotics and hyperthermia, a process by which a person's body is gradually warmed to 107 degrees Fahrenheit.
The treatment was initially being used to treat and destroy cancer cells, according to the hospital's website. But when it was used to treat cancer in two women who were also suffering from chronic Lyme disease, Douwes discovered that their Lyme symptoms also disappeared.
According to the website, Douwes has treated more than 800 Lyme patients and seen dramatic improvement. Borrelia burgdorferi, the bacterial cause of Lyme disease, cannot survive for long at temperatures above 106.88 degrees Fahrenheit.
Douwes notes, however, that Lyme is a complex disease, and while his focus is on killing the Borrelia spirochetes that cause it, hyperthermia doesn't address the many co-infections that often go hand-in-hand with a Lyme diagnosis.
"I've been on antibiotics, and I'll have to come home and still undergo treatment," Wiester said. "But right now I'm so ill that I can't function, and hopefully it can help with that."
Raising awareness
When it comes to preventing tick bites, the first thing to know is that Pennsylvania has had the most Lyme cases in the country for the past seven consecutive years, Moore said.
In addition, Westmoreland County had the third-highest number of Lyme incidents in the state in 2016, with 577 cases reported.
"Prevention is the best way to deal with this, and for people who've been bitten, it's even more important," Moore said.
Moore recommended applying permethrin to clothing if venturing into an area where ticks might live, or wearing DEET-based repellent.
Keeping your yard well-landscaped is also a good preventive measure.
"A tick needs moisture to survive, and it wants to live in your leaf litter," Moore said. "The shorter you can keep your lawn and the more sunlight you have, the less likely you're creating a good habitat for ticks."
For people who live near a tree line or wooded area, Moore said the network recommends treating the tree line with a tick killer twice per year, or using cedar chips — a natural repellent — as mulch.
For the first time this year, the state is offering free tick testing at East Stroudsburg University. The Pennsylvania Tick Research Lab will test ticks for the top four pathogens relevant to the species that is submitted. Additional testing is available but costs between $50 and $100 for Pennsylvania residents.
If someone is bitten by a tick, they can place it in a plastic bag, send it to the lab and receive results within three days.
So far, the lab has tested 9,032 Pennsylvania ticks, and nearly 35 percent have tested positive for some type of infection vector, according to TickLab.Org.
Moore strongly recommended that anyone who finds a tick on them send it for testing.
"It's easier to test a tick than a person," he said. "Tick testing is 99.9 percent accurate."
The larger focus, he said, should be on developing a cure.
"The bottom line is, whatever the treatment, we need more research," he said. "For the 75 percent of people who do well on a short course of antibiotics, that's great. But for the 25 percent of us who don't, we need a lot more research."
Patrick Varine is a TribLive reporter covering Delmont, Export and Murrysville. He is a Western Pennsylvania native and joined the Trib in 2010 after working as a reporter and editor with the former Dover Post Co. In Delaware. He can be reached at pvarine@triblive.Com.
Remove the ads from your TribLIVE reading experience but still support the journalists who create the content with TribLIVE Ad-Free.
Get Ad-Free >
Categories: HealthLocalNewsPennsylvaniaTop StoriesValley News Dispatch
SPAGHETTI DINNER BENEFITA Sept. 22 spaghetti dinner at the Parks Township Fire Hall, 1119 Dalmatian Drive in Vandergrift, will raise money to help defray Wiester's medical bills.It will be from noon to 5 p.M. And will also include a superhero photo booth, basket raffles and face painting.The cost is $10 for adults and $5 for children.
More Health Stories
UPMC settles whistleblower case for $38 million
RFK Jr. Says he had a dead worm in his brain. What are these parasites and how common are they?Yes, allergy season is particularly bad. Here's why it's about to get worse — and what you can do to cope
'Oh, Baby!': Millie's ice cream flavor celebrates Mother's Day, women's health
How 5 Black women are impacting Pittsburgh's wellness scene
Comments
Post a Comment