Treating Neurological Lyme Disease
Though neurological and psychiatric symptoms can be reduced with antibiotic treatment, emotional and cognitive problems arising from late-stage or chronic Lyme often call for a broader range of interventions. This includes lifestyle changes in such areas as diet, exercise, and environment.
Again, its worth reiterating that the longer an infection goes undetected, the harder it is to treat, and the more likely it is that symptoms will require multi-pronged, multi-system interventions besides antibiotics alone.
Extended Antibiotics For The Treatment Of Post
Three research groups have examined prospectively the effectiveness of prolonged antibiotic courses for post-Lyme disease syndromes., All trials had strict entrance criteria similar to the aforementioned definition of PLDS. The Klempner and colleagues study reported 2 parallel trials in which their cohort of 129 subjects was divided into seropositive and seronegative arms. Subjects randomized to treatment groups received 30 days of intravenous ceftriaxone followed by 60 days of oral doxycycline. Those randomized to the placebo arm received IV placebo for 30 days, followed by an oral placebo for 60 days. The primary outcome was health-related quality of life as assessed by standardized instruments . These instruments were administered at baseline, and then 30, 90, and 180 days. There was no difference in any outcome measure between placebo and treatment groups in either the seropositive or seronegative arm, or in a detailed battery of neuropsychological tests that was published subsequently. Although all patients had complained of cognitive dysfunction at baseline , objective measures of cognitive function, such as memory and attention, were normal compared with age-referenced normative data. Depression, anxiety, and somatic complaints improved in both the antibiotic and placebo arms groups between baseline and day 180.
Epidemiology Of Violence And Infections
Globally, ~1.6 million people die each year because of violence., Currently violence is not equally distributed throughout the world. Peace correlates strongly with education, health, and economic opportunity, and health correlates with a lower prevalence of infectious disease. Cognitive impairments contribute to violence, and higher cognitive functioning is a deterrent to violence. There is a strong correlation between national intelligence quotient and lower parasite stress. As countries overcome infectious diseases, the intelligence of their citizens increases this helps explain the Flynn Effect. One study sampled 20 European nations and demonstrated that the prevalence of the brain parasite Toxoplasma gondii was positively associated with national homicide rates.,
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What Are The Symptoms Of Lyme Disease
Most children who develop Lyme disease do not recall having been bitten by a tick. Symptoms can appear a few days to many months after the bite, and can include:
- a rash in the form of a bulls-eye
- facial palsy, or weakness of the facial muscles
- headache/meningitis, or swelling of tissues around the brain and spinal cord
- fainting
- arthritis
- carditis
Children with a bulls-eye rash may also have systemic symptoms such as fever, fatigue, and joint aches. The rash may not have a classic bull-eye appearance, especially on people with darkly pigmented skin, and can be mistaken for cellulitis, ringworm, or other skin conditions. Children who develop a disseminated infection often have not had a preceding skin rash.
The most common late stage symptom of Lyme disease is arthritis, particularly in the large joints and especially the knee. Typically, the joints will be more swollen and tender than painful, and anti-inflammatory medicine can help.
Lyme Master Symptom List
Master Lyme Disease Symptom List
Lyme Disease Symptoms:
- Abnormal sensitivity to hot or cold
- Allergies
- Canker sores
- Chills and/or shakes when hungry
- Cold hands and feet
- Extreme fatigue after minimal exertion
- Feeling hot or cold often
- Flu-like symptoms, on-going or recurrent after initial gradual or acute onset includes mild fever , chills
- Hair loss
- Herpes simplex or shingles rash
- Increased susceptibility to infections
- Low blood pressure
- Low body temperature
- Lymph nodes painful, swollen
- Night sweats
- Orthostatic Intolerance
- Reactive hypoglycemia and insulin resistance
- Thirst, increased
- Temperature irregularities often feeling hot or cold irrespective of actual ambient temperature and body temperature low body temperature
- Thyroid inflammation
CARDIOPULMONARY/RESPIRATORY/CIRCULATORY:
- Cardiac abnormalities
- Cough
- Dyspnea or shortness of breath after minimal or no exertion
- Heart attack
- Heart pounds so hard it shakes body, bed
- Pulse skips
- Serious rhythm disturbances of heart
- Sighing, frequent, not related to mental/emotional state
- Stroke
- Other symptoms worsen before start of menstruation
- Worsening of PMS
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Half A Million People Treated For Lyme Disease Each Year
Each year nearly half a million people in the United States are diagnosed and treated for Lyme disease, also known as Lyme borreliosis, caused by a bacterium carried by deer ticks and transmitted to humans through their bite. The majority of cases have been reported in the northeastern, mid-Atlantic, and north-central states, but the geographic range where ticks and tick-borne diseases are found continues to expand.
Although most cases can be cured with a two- to four-week course of oral antibiotics, 10-20 percent of patients may suffer with symptoms of pain, fatigue, or difficulty thinking that last for months to years after treatment.
Several studies have pointed to a connection between Lyme disease and cognitive disorders months to years after antibiotic therapy or in people with untreated infections. In severe cases, individuals with late-stage Lyme disease may experience impaired concentration, irritability, memory and sleep disorders, and painful nerve dysfunction.
Dr. Michael Benros emphasizes that most people do not develop severe mental health issues after Lyme borreliosis. During the study period, only 7 percent of the nearly 13,000 individuals with a hospital diagnosis of Lyme disease followed up with hospital clinicians complaining of symptoms subsequently diagnosed as mental disorders.
How We Care For Lyme Disease
The Division of Infectious Diseases at Boston Children’s provides comprehensive care for children and adolescents with Lyme disease and other infections. Our services include consultation, evaluation, treatment, and management of long-term complications of Lyme disease.
The commitment and compassion with which we care for all children and families is matched only by the pioneering spirit of discovery and innovation that drives us to think differently, to find answers, and to build a better tomorrow for children everywhere.
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The Confusing Terminology Of Chronic Lyme Disease
The mere name chronic Lyme disease is in itself a source of confusion. Lyme disease, in conventional use, specifically describes infection with the tick-borne spirochete B burgdorferi sensu lato. The diagnosis chronic Lyme disease, by incorporating that terminology, connotes a similar degree of microbiologic specificity the addition of the word chronic further implies that there is some distinction between chronic Lyme disease and other manifestations of the infection. This distinction in itself is problematic because several manifestations of Lyme disease may indeed present subacutely or chronically, including Lyme arthritis, acrodermatitis chronicum atrophicans, borrelial lymphocytoma, and late Lyme encephalopathy.
Chronic Lyme disease, however, has no clinical definition and is not characterized by any objective clinical findings. The only published attempt to define CLD provisionally produced a description too broad to distinguish CLD from myriad other medical conditions, and the case definition did not mention evidence of B burgdorferi infection . The absence of a definition makes it impossible to investigate whether a patient population with putative CLD has evidence of infection with B burgdorferi this would seem to be a basic requirement to include a syndrome within the term Lyme disease. It stands to reason that it is impossible to even posit a well-designed antibiotic trial when the study population is undefined.
Promoting Collaborative Approaches To Understanding Lyme And Other Tickborne Diseases
Supporting coordinated research efforts through TickNET
CDCs TickNET program was established by CDC in 2007 to bring together expertise from state public health partners, CDC, and research scientists. TickNET fosters coordinated surveillance, education, and research on the prevention of tickborne diseases. For more information, see TickNETA collaborative public health approach to tickborne disease surveillance and research.
Funding state health departments to improve surveillance and prevention
CDC provides funds to state health departments for Lyme and tickborne disease surveillance through the Epidemiology and Laboratory Capacity for Infectious Diseases Cooperative Agreement. This money coupled with CDCs subject matter expertise helps state public health departments strengthen their ability to detect, respond to, control, and prevent Lyme and other tickborne diseases.
Supporting vector-borne disease Centers of Excellence
CDC has awarded nearly $50 million to five universities to establish regional Centers of Excellence to help effectively address emerging vector-borne diseases in the United States. Scientists and public health experts at the Northeastexternal icon and Midwestexternal icon Regional Centers of Excellence will have a strong research component involving the surveillance and control of disease-carrying ticks.
Supporting large-scale prevention research
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How Lyme Disease Affects The Brain
Did you ever wonder how Lyme disease affects the brain, including symptoms of brain fog? The U.S. Centers for Disease Control and Prevention estimates that about 200,000 people are diagnosed every year with Lyme disease.
But many believe the true number of people suffering from Lyme in the United States is actually much higher. Thats because Lyme disease symptoms vary greatly and can impact different people in different ways. Aside from that, the ELISA screening test most doctors use misses up to 35 percent of Lyme cases, making it a horrible first-line detection for the disease.
The problem is likely only going to get worse, too, being that Lyme is among the major health effects of climate change.
Even with many cases missed in the doctors office, Lyme disease is still the most common tickborne disease in the northern hemisphere. Despite being so common, Lyme disease symptoms vary depending on the patient and how the bacteria impacts different systems of the body. In fact, Lyme disease often mimics other diseases or illnesses and be referred to as the new great imitator.
Lyme disease is often misdiagnosed as such diseases, including:
- Chronic fatigue syndrome
- Autism-like syndromes
- Various psychiatric illnesses
Can Lyme Disease Affect Personality
Itis by no means an unprecedented occurrence for a bacterial infection to impacta patients brain. Syphilis, a sexually transmitted infection, can turn toneurosyphilis. This causes auditory and visual hallucinations andvarying types of mood disturbances in patients if left untreated. Likewise, the bacteria that leads to Lymedisease could have similar effects on the brains of people who have beeninfected.
Oftencalled The Great Imitator, Lyme disease can damage the central nervous system,which can lead to unexpected changes in a patients thoughts, feelings, andbehavior. As one study revealed: A broad range of psychiatric reactions have been associated with Lymedisease including paranoia, dementia, schizophrenia, bipolar disorder, panicattacks, major depression, anorexia nervosa, and obsessive-compulsive disorder.Depressive states among patients with late Lyme disease are fairly common,ranging across studies from 26% to 66%.
Withsuch a wide range of mental illness linked to Lyme-related symptoms, its nowonder that Lyme-related illness is so hard to diagnose. Because we understandso little about the long-term effects of Lyme disease and personality changes,many people who experience physical symptoms or mental illness after beingdiagnosed with Lyme disease struggle for quite some time without receiving aconcrete diagnosis.
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What Can I Expect Long Term If My Child Has Lyme Disease
If Lyme disease is caught and treated early, most children will make a full recovery. Some children with Lyme disease go on to experience what’s called a post-infectious syndrome with symptoms that may include feeling fatigue, joint aches and pains, headaches, difficulty sleeping, and problems concentrating. Since the infection itself is gone by this time, doctors generally don’t prescribe antibiotics. Each child is different, but it’s not uncommon for symptoms of post-infectious syndrome to linger for months, or even years, and they can be made worse by stress or other illness. But most children do make a full recovery.
Blacklegged, or deer, ticks are very small, so it helps to know what to look for when doing a tick check. Adults are about the size of sesame seeds and in the nymph or larva stage, they can be as tiny as a poppy seeds.
Infectious Diseases And Mental Health
Lyme disease and TBRF are not the only infectious disease to have ties to mental illness. One of the earliest and most well-known examples of an infectious disease that causes neurological and psychiatric symptoms is syphilis.
This sexually transmitted disease, which like Lyme is caused by a spiral-shaped bacteria and treated at early stages with antibiotics, has been called the great imitator also like Lyme because its symptoms can be wide-ranging and non-specific, especially at late stages. That includes neurological and psychiatric symptoms that become much more likely the longer the disease goes untreated.
Given that ties between late-stage syphilis and mental illness have long been recognized by the medical community, it shouldnt be surprising that untreated Lyme disease poses similar risks to patients psychological wellbeing. Recent studies have investigated possible connections between Lyme disease and a host of mental health issues, including:
- Developmental disorders
- Seizures
- Suicide
Yet there are still many doctors and scientists who doubt the existence of chronic Lyme disease, and/or do not realize how many different borrelia cause TBRF, hurting patients chances of fighting both the diseases themselves and their mental health consequences.
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How Is Lyme Disease Diagnosed
It can be hard for doctors to diagnose Lyme disease because:
- The tick bites and rash might not be noticed.
- Many early symptoms seem like the flu or other illnesses.
- Blood tests are not always accurate, especially early in the illness.
Doctors can diagnose early Lyme disease if they see a tick bite and rash. Blood tests usually aren’t helpful in the first month of Lyme disease.
To diagnose late Lyme disease, doctors:
- Ask about symptoms.
- Do blood tests that look for signs of Lyme disease.
Depending on the symptoms, doctors might order other tests, such as a spinal tap, which looks at the fluid around the brain and spinal cord.
How Do You Treat Lyme & Tick
Access to proper tick bite treatment can often be hindered because there the medical community disagrees about how to identify those with Lyme Disease. Moreover, no perfect measures of identification exist. Lacking good measures for Lyme Disease, which has been readily accepted for decades, is compounded by lacking measures for the dozens of co-infections.
Diagnosis guidelines do not require positive blood work, yet many physicians erroneously use the CDC epidemiology study submission guidelines for diagnosis. Thus, patients are often forced to pay out of pocket for the best diagnostic tools available, which are through private lab companies.
Relying on incorrect guidelines means patients are told they must have 5 out of 10 bands to be diagnosed with Lyme. This creates a major barrier to quick and necessary tick bite treatment. Only clinical opinion after a physical exam is required to make a diagnosis of Lyme.
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How Does Lyme Disease Affect Horses
Diagnosing Lyme disease is a difficult endeavor.
The horses that do develop Lyme disease, the symptoms are vague and somewhat nonspecific, which makes this a difficult disease, Dr. DeNotta says. Theres a lot of confusion, theres a lot of controversy.
The signs of the disease are general and can be indicative of a number of other diseases.
Are Your Symptoms Because You Have Lyme Or Are They Caused By Lyme Itself
May is Lyme disease awareness month. Over the years, as an active clinician who regularly sees people who are suffering from Lyme disease, I read with interest the news items that find their way into popular and mainstream media outlets regarding the condition. Most focus on prevention efforts wear white clothing, tuck your pants inside your socks if going into the woods, wear tick repellent spray, check yourself after coming indoors, mind your pets, etc. Some focus on the medical signs, symptoms, and implications of Lyme the classic bullseye rash, stiff joints, fatigue, headaches, and so on. Fewer will focus on the enduring medical, legal, and political controversy surrounding this illness. Is chronic Lyme disease real? Should people be treated with long-term antibiotics? Is the testing accurate? Are the current treatment guidelines appropriate and adequate to address all facets of the illness? These are all worthy and important topics to highlight. However, I see few items about the potential psychological and psychiatric implication of Lyme and other tick-borne infectious diseases. This is a major factor that has tremendous impact on the lives of those suffering from this illness.
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How Do Lyme & Tick
- A 37 year old man with a constant headache so intense any sound, light, or movement is intolerable.
- A 26 year old with Multiple Sclerosis but with no family history of the disease.
- A 12 year old girl with chronic muscle spasms so severe she requires a walker.
- A 51 year old woman unable to retrieve words when she speaks.
- A 10 year old boy with a sudden onset of an obsessive-compulsive disorder.
- A 4 year old with intense rages that occur almost all day.
- A 27 year old man with crippling anxiety that over 30 physicians and mental health providers were unable to treat effectively
All these cases are people with Lyme and Tick-Borne Disease. It seems inconceivable that a little tick can cause such extremes and incapacitation. Yet these diseases and autoimmune disease, in general, are on the rise.
**Dr. Roseann is hosting a professional training on the Neurocognitive and Neuropsychiatric impact of Lyme, Tick-Borne, and PANS/PANDAS with BCIA on June 29th. Learn More.**
Retrospective Chart Review: Aggressiveness
A total of 1000 charts of LD patients were screened to identify charts documenting aggression. All but two were from the US. These charts were then reviewed to identify patterns of aggressiveness. This part of the study was not a statistical analysis of frequency, dominance, or general occurrence of the behaviors discussed.
The most commonly reported aggression with LD was impulsive, sometimes provoked by intrusive symptoms, sensory stimulation or frustration and was invariably bizarre and senseless. Aggression occurred both in homes and in public settings. Some of the aggressive patients had temporal lobe dysfunction, sometimes accompanied with partial seizures. Acute episodes of rage, sometimes referred to as Lyme rage, were reported and were witnessed on multiple occasions. The anger during these episodes had a very abrupt onset and was extremely intense and often with minimal cognitive control.
One patient described that his pain was so bad, and he wanted to take it out on everyone else. Another patient who developed an impairment of empathy and was highly sensitive to perceived injury expressed, if someone hurts me, I want to hurt them back. I want to make them cry. I want them to feel my pain. Others responded to the intrusive homicidal and harmful impulses by becoming suicidal or self-destructive in an effort to prevent themselves from harming others. One patient accused his family members of being imposters.
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