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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.
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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.
This article originally appeared on Neurology Advisor
Three-Dose Lyme Vaccine Candidate Stimulates Immunogenicity, Appears Safe
An investigational three-dose Lyme vaccine (VLA15) against Borrelia outer surface protein A (OspA)-specific serotypes generated immunogenicity and appeared safe, according to results of two linked phase II trials.
After administration of VLA15 on a 0/2/6-month vaccine schedule (study two), OspA-specific IgG geometric mean titers (GMTs) ranged from 278.5 to 545.2 units/mL with the 135-μg vaccine dose at 1 month after the third dose, and 274.7 to 596.8 units/mL for the 180-μg dose, reported Susanne Eder-Lingelbach, MSc, of Valneva Austria in Vienna, and colleagues in Lancet Infectious Diseases.
In study one, which used a 0/1/2-month schedule, mean GMTs ranged from 101.9 to 283.2 units/mL for the 135-μg vaccine dose and 115.8 to 308.6 units/mL for the 180-μg dose, depending on the OspA serotype.
The VLA15 vaccine contains three lipidated fusion proteins that each link the C-terminal domains of two OspA serotypes, so that it targets six serotypes in total. In animal studies, VLA15 induced protection in mice from Borrelia species common in North America (B. Burgdorferi) and Europe (B. Burgdorferi, B. Afzelii, B. Garinii, and B. Bavariensis).
The 180-µg dose generated the best OspA-specific antibody response in both studies, Eder-Lingelbach and team noted, but pointed out that differences in antibody response between the 135-µg and 180-µg groups were not statistically significant for most serotypes, except for serotypes 4 (P=0.041) and 6 (P=0.028) at month 18 in the second trial.
No Lyme borreliosis vaccines are available for use in humans, and the VLA15 vaccine is the only one in advanced clinical development, the authors pointed out. "These findings support the continued development of a 180 µg VLA15 dose administered using an extended schedule to prevent Lyme borreliosis, which remains a common and growing threat in regions of the Northern Hemisphere," Eder-Lingelbach and colleagues wrote.
In a previous phase I trial, the vaccine appeared safe and generated immunogenicity in young adults. The current trials enrolled people ages 18 to 65.
GMTs in both studies tended to be higher in participants ages 18 to 49 when compared with those ages 50 to 65. However, a sensitivity analysis did not find significant differences between age groups, except for serotype 2 at month 18 in the second study (P=0.047).
Lyme borreliosis vaccine candidates targeting the OspA protein first emerged in the 1990s, explained Raymond Dattwyler, MD, and Paul Arnaboldi, PhD, of the New York Medical College in Valhalla, in an accompanying editorial. "A great deal of research has taken place over the last 40 years but discovery of alternative vaccine candidates has proven to be elusive. Despite public fears and some drawbacks, OspA remains the best human vaccine candidate."
At 1 month after the third vaccine dose in both studies, antibody functionality was demonstrated using serum bactericidal assays, which were significantly correlated with ELISA assay titers. However, administration of VLA15 using a 0/2/6-month schedule led to a 1.4- to 2.7-fold increase in OspA-specific IgG antibodies compared with the 0/1/2-month schedule at 1 month after the third vaccination, the authors noted.
Antibody levels peaked at 1 month after vaccination in both trials, and waned rapidly over the following 5 to 6 months, but decreased more slowly in those who received the 0/2/6-month regimen.
The editorialists noted that the VLA15 vaccine required multiple initial doses to induce an immune response protective against Lyme borreliosis, and rapid drops in the titers after the third dose could mean that more than one booster dose per year might be necessary to maintain protective levels of antibodies. "Public acceptance of multiple vaccine doses could be problematic," they pointed out.
They also noted that during the development of the first OspA vaccine (LYMErix) in the 1990s, the lead investigator of that trial voiced concern that the vaccine might generate a cross-reactive immune response that could result in antibiotic-refractory Lyme arthritis and autoimmunity. "That concern was scientifically invalid," Dattwyler and Arnaboldi explained, but it led to public fear about the vaccine.
"That fear continues despite all evidence that OspA vaccines do not cause arthritis or autoimmunity," they wrote. "More valid concerns about OspA-based vaccines are antigenicity and the intensity and duration of the protective antibody response."
The antibody response produced by the vaccine acts in the tick's midgut to block spirochete transmission to the host and does not work directly in the host. "Vaccine efficacy requires that the host titer of anti-OspA be maintained at a high level," Dattwyler and Arnaboldi noted.
VLA15 Safety
Participants who received the VLA15 vaccine reported adverse events more frequently than the placebo groups. In study one and study two, 94% and 96% of participants reported solicited local adverse events, respectively, compared with 26% and 35% in the placebo groups. The most common solicited local adverse events were tenderness and pain.
Solicited systemic adverse events in the vaccine groups were reported by 69% and 74% of participants in study one and two, respectively, versus 43% and 51% of those who received placebo. The most commonly reported systemic adverse events were myalgia, headache, and fatigue, which were primarily mild or moderate. Serious unsolicited adverse events were infrequent, reported by 2% and 4% in studies one and two, respectively. No deaths were reported.
Study one took place at nine centers in the U.S., Germany, and Belgium, and randomized 573 healthy adults to receive 90-µg, 135-µg, or 180-µg doses of the vaccine or placebo at months 0, 1, and 2. After a safety run-in period, the 90-µg group was discontinued.
Study two took place at five sites in the U.S. (also included in study one), and randomized 248 adults to receive 135-µg or 180-µg doses of the vaccine or placebo at months 0, 2, and 6. Study two also included a booster phase at month 18; results from that phase will be reported in the future.
Eder-Lingelbach and colleagues acknowledged that the different schedules were not evaluated head-to-head, but in separate trials. They also noted that serotype 1 is the only serotype with a known immunologic correlate of vaccine-induced immunity, so that predicted protection from the vaccine can't be extrapolated to other serotypes. Robust immune responses observed among the older participants in the study cannot be extrapolated to those over the age of 65. In addition, the majority of participants were white, which limits the generalizability of the studies' results.
Katherine Kahn is a staff writer at MedPage Today, covering the infectious diseases beat. She has been a medical writer for over 15 years.
Disclosures
Both trials were funded by Valneva Austria.
Most study authors, including Eder-Lingelbach, are Valneva employees and reported owning stock and sharing options in Valneva. Others are paid consultants for Valneva.
Dattwyler and Arnaboldi reported no competing interests.
Primary Source
Lancet Infectious Diseases
Source Reference: Bézay N, et al "Optimisation of dose level and vaccination schedule for the VLA15 Lyme borreliosis vaccine candidate among healthy adults: two randomised, observer-blind, placebo-controlled, multicentre, phase 2 studies" Lancet Infect Dis 2024; DOI: 10.1016/S1473-3099(24)00175-0.
Secondary Source
Lancet Infectious Diseases
Source Reference: Dattwyler RJ, Arnaboldi PM "Vaccine hesitancy in Lyme borreliosis" Lancet Infect Dis 2024; DOI: 10.1016/S1473-3099(24)00221-4.
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