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Late Stage Neurological Lyme Disease

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Recent Progress In Lyme Disease And Remaining Challenges

Video 8 – Late Stage Neurological Lyme Disease

Lyme disease is the most common vector-borne disease in the United States with an estimated 476,000 cases per year. While historically, the long-term impact of Lyme disease on patients has been controversial, mounting evidence supports the idea that a substantial number of patients experience persistent symptoms following treatment. The research community has largely lacked the necessary funding to properly advance the scientific and clinical understanding of the disease, or to develop and evaluate innovative approaches for prevention, diagnosis, and treatment. Given the many outstanding questions raised into the diagnosis, clinical presentation and treatment of Lyme disease, and the underlying molecular mechanisms that trigger persistent disease, there is an urgent need for more support. This review article summarizes progress over the past 5 years in our understanding of Lyme and tick-borne diseases in the United States and highlights remaining challenges.

Symptoms Of Late Stage Lyme Disease

Your suffering has moved from an occasional inflammation flare-up to chronic pain in your muscles, tendons, and joints. You may have been diagnosed with some form of arthritis. Your headaches have become severe. You may even experience dizziness or vertigo.

Additional symptoms include a stiff neck, sleep disorders like insomnia, and numbness in your outer extremities. You may also lack the ability to focus, and paying attention when having conversations has become difficult. Your fatigue is so bad you sometimes do not want to attempt getting out of bed.

The worse symptom may be that you have tried to get the right help, but doctors have failed to give you an accurate diagnosis. Because of this, you may feel like you are crazy, or your friends and family may not believe you are in pain.

You may be wondering how you were able to reach late stage Lyme disease without proper treatment.

What Options Are There For Neurological Lyme Disease Treatment

The most common treatment for Neurological Lyme Disease is oral or intravenous antibiotics. Other treatments include anti-virals, immune modulators and hormone therapies.

In order to effectively treatNeurological Lyme Disease, it is important that a natural approach is also incorporated into any treatment protocol, especially for late stage neurological Lyme disease treatment. Natural treatment therapies can include:

  • Naturally boosting your immune system by eating a lyme disease diet which includes probiotic foodsand anti-inflammatory foods such as leafy green vegetables, coconut oil, avocado, nuts and fruits.
  • Take nutritional supplements to help repair the health of your cells such as vitamin D, CoQ10, medicinal mushrooms, including chaga mushroom, B-complex vitamins, omega-3 fatty acids, magnesium, turmeric, and probiotics.
  • The medicinal herb Polygonum cuspidatum strengthens and protects the endothelial structures in the brain from inflammatory damage .
  • Diffuse 2 drops of pure essential oil, such as rosemary, lemon, orange and/or lavender oil, for nerve and brain support.
  • Getting plenty of rest and manage stress levels with the use of activities such as meditation and exercise.
  • Reducing your exposure to mould and parasites.

Additional Lyme Disease Natural Treatment Strategies are discussed in our detailed article HERE:

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Early Localized Lyme Disease

During this stage, the infection has not yet spread to other parts of the body. Diagnosing Lyme disease during stage 1 gives you the best chances of a quicker recovery.

Early localized Lyme disease commonly begins with a rash called erythema migrans. This rash, which occurs in 70% to 80% of infected people, typically develops seven days after a bite but can occur within three to 30 days.

The rash grows slowly over several days and can be more than 12 inches in diameter. The rash may be warm to the touch but is not usually painful or itchy. Some people may develop the classic bulls eye rash, but the rash’s appearance can vary greatly.

The following symptoms may also be present with or without a rash:

  • Joint or muscle pain
  • Swollen lymph nodes

People treated during this stage often recover quickly and completely. Treatment involves 10 to 14 days of oral antibiotics.

Unfortunately, 10% to 25% of cases may go unnoticed and progress to later stages of the disease.

Biorepositories And Research Cohorts

Neuro

Well-characterized samples are an essential tool to help researchers develop and validate new diagnostic tests and to better understand the complexities of LD. Well-characterized sample sets can benefit medical providers, test developers, and the public at risk for LD . It is critical that sample users understand the criteria used to enroll participants, how samples were collected and stored, and what additional clinical and testing data may be available. Additional benefits can be realized when multiple sample users are using the same well-characterized sample sets. Current sample sets available for researchers include the CDC Lyme Serum Repository , the Lyme Disease Biobank , and samples from the Studies of Lyme Immunology and Clinical Events at Johns Hopkins University School of Medicine. Additionally, some investigators also have their own sample collections with, in some cases, blood samples, skin biopsy specimens and synovial fluid which form the basis for collaborative studies .

Lyme Disease Biobank

Lyme Disease Research Center

Long Island Outdoor Worker Cohort

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Understanding Neurologic Lyme Disease

Lyme disease is a condition that is carried by infected black-legged deer ticks. These ticks are usually found in wooded areas with tall grass. Ticks intended targets are deer and other woodland animals, but will just as easily attach themselves to hikers, hunters, and unsuspecting adventurers. Lyme disease cases are consistently on the rise and the CDC estimates that the current numbers, around 300,000 cases every year, are dramatically underreported.

Dr. Joseph Schneider, DC, DACNB head neurologist at the Hope Brain and Body Recovery Center utilizes state-of-the-art treatment methods and expertise to help patients suffering from Neurologic Lyme Disease. Our team understands how much of a burden Lyme Disease can be and want to help you manage your symptoms and restore your quality of life.

When Do Symptoms Of Lyme Disease Appear

Stage 1: Early Localized Disease

Symptoms with early localized Lyme disease may begin hours, a few days or even weeks after a tick bite. At this point, the

infection has not yet spread throughout the body. Lyme is the easiest to cure at this stage.

Symptoms may include:

  • skin rash, which may or may not look like a bulls eye
  • flu-like illness, including chills and fever
  • muscle soreness and joint pain
  • swollen lymph nodes
Stage 2: Early Disseminated Lyme

Early disseminated Lyme may occur several weeks or months after the tick bite. Bacteria are beginning to spread throughout the body. In addition to flu-like symptoms, this stage is often characterized by increase in symptoms such as:

  • pain, weakness or numbness in the arms, legs
  • heart problems, such as palpitations, chest pain
  • rash may appear on body
  • facial paralysis
Stage 3: Late Disseminated Lyme Disease

Many have asked, do you ever get rid of Lyme disease? Can Lyme disease return? If Lyme disease isnt promptly or effectively treated in the first two stages, late disseminated Lyme occurs weeks, months or even years after the tick bite. The Lyme bacteria have spread throughout the body and many patients develop chronic arthritis as well as an increase in neurological and cardiac symptoms. Symptoms may include:

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Unexplained Pain And Other Sensations

Some people with Lyme may have sharp rib and chest pains that send them to the emergency room, suspecting a heart problem 00090-7/abstract%20″ rel=”nofollow”> 27).

When no problem is found, after the usual testing, the ER diagnosis is noted as an unidentified musculoskeletal cause.

You can also have strange sensations like skin tingling or crawling, or numbness or itchiness 00090-7/abstract%20″ rel=”nofollow”> 27).

Other symptoms have to do with cranial nerves.

  • Ear-ringing . Tinnitus can be a nuisance, especially at bedtime when it seems to get louder as youre trying to fall asleep. About 10 percent of people with Lyme experience this (
  • Hearing loss. One study reported that 15 percent of Lyme patients experienced loss of hearing .
  • Jaw pain or toothaches that are not related to actual tooth decay or infection.

Summary:

Pans/pandas And Lyme Disease

Video 6 of 6 Neuro Late Stage Lyme Disease

PANDAS an acronym for pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. It was first recognized in 1998 and characterized by a group of neurological symptoms following a strep infection. In PANDAS, the antibodies formed against strep also attack neuronal receptors in the brain leading to repetitive behavior, decreased concentration, decreased social engagement, aggression/rage, anxiety, insomnia, and phobias.

In the past 20 years since PANDAS was first recognized, other infections were identified as causing anti-neuronal antibodies that produce similar symptoms. In one study, 60% of patients with late-stage Lyme disease tested positive for anti-neuronal antibodies. Other published research has identified a protein on Borrelia that has a similar structure as strep, suggesting antibodies similar to strep can be triggered by Lyme disease and manifest similarly to PANDAS.

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Treatment Of Chronic Lyme Disease

Damage to the peripheral and autonomic nervous system is common in late-stage Lyme disease. Numbness, tingling, burning and nerve pain experienced in peripheral neuropathy and radiculitis require effective treatment of the involved infections. Therapies directed at decreasing the inflammatory response by the immune system and repair of the damaged nerves is also part of the strategy when treating symptoms associated with chronic neurological Lyme disease.

Neuropathy is one of the most debilitating and challenging to treat symptoms of chronic neurological Lyme disease. Intravenous immunoglobulin therapy can be useful at reversing any form of neuropathy including CIDP caused by Lyme disease. The biggest hurdle in using IVIG as a therapy is the expense , so insurance coverage of this therapy is typically necessary. Often, criteria for health insurance approval is a positive nerve conduction study and a biopsy demonstrating small fiber neuropathy. Treatments are usually once per month, and it can take 6-18 months to see results.

Other therapies can also be helpful in treating the untoward neurological effects of Lyme disease. Work with a Lyme-literate doctor to determine the most effective therapies for the infection and subsequent immune-mediated inflammatory response that is causing your symptoms.

Peripheral Neuropathy In Lyme Disease Patients

Reported cases of Lyme disease have been rising steadily over the past 30 years, but its diagnosis can be challenging. Left untreated, patients with Lyme disease can go on to develop neurological symptoms, including those that are characteristic of peripheral neuropathy.

Francis Bean, DPM, has been experiencing neurological symptoms in his lower extremities for more than six months. When they arise, he feels a tingling in his hallux, his heels go numb, and he develops a hypersensitivity to temperature and touch that leads to a painful burning sensation. On paper, these sound like common symptoms of diabetic peripheral neuropathya condition with which Bean, as a podiatrist, is quite familiar.

But Bean doesnt have diabetes. His peripheral neuropathy developed as a result of Lyme disease, and in the US, hes one of a growing number of people with similar complications.

Lyme borreliosis, or Lyme disease, is a multisystem infectious disease caused in the US by the spirochete Borrelia burgdorferi , which is transmitted almost exclusively through tick bites.1,2 Though cases are concentrated primarily in limited geographic areas where the tick is endemic, Lyme disease is the most commonly reported vector-borne infection in the country, and reported cases of its occurrence have been rising steadily over the past 30 years.3,4

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Can Lyme Disease Cause Neurological Problems

Lyme disease can wreak havoc on the entire body and every system within it, including the nervous system. The nervous system is a communication pathway that is made up of the brain and spinal cord. Another part, the peripheral nervous system, has nerves that extend to other parts of the body from the spine.

When this system becomes affected by Lyme disease, certain health issues can arise that affect more than just the brain the nervous system is, after all, essentially in charge of a persons movement, balance, senses, thought processes, and awareness. Unfortunately, the borrelia bacteria that causes Lyme also has the ability to cross the blood-brain barrier, which means it can get directly into the brain and cause issues with neurological health.

The reason why the nervous system can be so strongly affected by Lyme disease is because the borrelia bacteria is able to travel through the bloodstream throughout the entire body. It makes its way to joints, tissues, and the nervous system, and camps out wherever it can to survive in its new host.

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Early Disseminated Lyme Neuroborreliosis

Effects Of Untreated Lyme Disease

The classic triad of this stage, also known as meningoradiculoneuropathy, includes aseptic meningitis, cranial neuropathy, and painful radiculoneuritis which may occur alone or in combination. Acute encephalomyelitis is seen less frequently. Neurologic signs and symptoms develop from weeks to months after inoculation. The onset is acute or subacute. Accompanying erythema migrans and systemic signs and symptoms characteristic of early disseminated Lyme neuroborreliosis, may be present in up to two-thirds of cases. Neurologic involvement can occur without erythema migrans, however, and can be the first manifestation of the disease. Only 40% of patients recall tick bite. The absence of a history of travel to or residence in an endemic area tends to warn the clinician against the diagnosis of Lyme neuroborreliosis.

About two-thirds of patients with early disseminated Lyme neuroborreliosis have cranial neuropathies which can occur without other neurologic or systemic features and without preceding erythema migrans. The facial nerve is involved most commonly, although any of the cranial nerves may be involved. Remarkably, bilateral facial palsy is seen in approximately one-third of such cases. The differential diagnosis of bilateral facial palsy includes Guillain-Barre syndrome, acquired immunodeficiency syndrome , various other causes of meningitis, and Tangier’s disease.

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What Is Neurologic Lyme Disease

Neurologic symptoms of Lyme disease occur when the Lyme disease bacteria affect the peripheral or central nervous systems.

  • Cranial nerve involvement: When the cranial nerves are affected, facial palsy can occur on one or both sides of the face.
  • Peripheral nerve involvement: When the peripheral nerves are affected, patients can develop radiculoneuropathy which can cause numbness, tingling, shooting pain, or weakness in the arms or legs.
  • Central nervous system involvement: When the central nervous system is affected, Lyme meningitis can cause fever, headache, sensitivity to light, and stiff neck.

Out of every 100 patients whose cases are reported to CDC, 9 have facial palsy, 4 have radiculopathy, and 3 have meningitis or encephalitis. Because of reporting practices, this statistic may overestimate how often these manifestations are seen by clinicians.

Why And How Lyme Disease And Tbrf Affect Mental Health

Lyme disease and TBRF can wreak havoc on a patients mental health in the following ways:

  • Direct effects As with syphilis, the bacteria that causes Lyme disease and TBRF can invade the central nervous system and cause neurological and psychiatric symptoms that are organic in origin. This is what doctors call neurological Lyme disease or Lyme neuroborreliosis.
  • Indirect effects The discomforts and challenges of living with and/or being treated for Lyme disease or TBRF can lead to anxiety, depression, and other mental health conditions that are not necessarily caused by the bacteria, but are indirectly caused or exacerbated .

Of course, these effects are not either/or, but rather can coexist and compound one another. Learn more about each below.

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Achy Stiff Or Swollen Joints

Joint pain and stiffness, often intermittent, are early Lyme symptoms. Your joints may be inflamed, warm to the touch, painful, and swollen. You may have stiffness and limited range of motion in some joints .

Pain may move around. Sometimes your knees may hurt, whereas other times its your neck or your heels. You may also have bursitis . Bursae are the thin cushions between bone and surrounding tissue.

The pain may be severe, and it may be transitory. More than one joint may be affected. Most often the large joints are involved .

People often attribute joint problems to age, genetics, or sports. Lyme should be added to that list, as these statistics indicate:

  • One study estimates that 80 percent of people with untreated Lyme have muscle and joint symptoms .
  • Fifty percent of people with untreated Lyme have intermittent episodes of arthritis .
  • Two-thirds of people have their first episode of joint pain within six months of the infection .
  • Use of anti-inflammatory drugs may mask the actual number of people with joint swelling .

Summary:

Joint pain that comes and goes, or moves from joint to joint, could be a sign of Lyme.

Stage : Early Disseminated Lyme Disease

2013 Chronic Late-Stage Lyme Disease hospital episode 3

Timing: Weeks to months after a tick bite

In early disseminated Lyme disease, the infection has started to move beyond the site of your tick bite to other parts of your body such as your heart, brain, or spinal cord. Lyme disease that has moved to the brain is sometimes referred to as Lyme neuroborreliosis, or neurological Lyme disease.

Common symptoms of early disseminated Lyme disease include:

  • More than one EM rash

  • Pain that may come and go and move around the body, in joints, tendons, muscles, and bones

  • Inflammation of the brain and spinal cord , which can cause severe headache, neck stiffness, and sensitivity to light and sound

  • Numbness, weakness, or tingling in the arms and legs

  • Weakness or drooping on one or both sides of the face difficulty closing an eyelid

  • Inflammation of the heart that can cause heart palpitations, irregular heartbeat, dizziness, shortness of breath, or fainting. If you are experiencing any of these heart symptoms, seek immediate medical care.

You may also experience a worsening of earlier Lyme disease symptoms.

Lyme disease can cause joint pain , a stiff neck , or weakness or drooping on one or both sides of the face, known as facial palsy .

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