Getting Diagnosed With Lyme Disease In Canada Harder Than You Might Think
Rachel was officially diagnosed in July, 2017, through a US testing centre after numerous tests in Canada failed to detect her Lyme infection.
From official diagnosis, her full recovery took approximately 18 months.
She had an MRI, the Ontario Lyme test, nerve sensitivity and damage tests, all of which came out negative, but her symptoms continued to worsen so she pursued further testing.
Rachel began to worry that she might have vertigo or early onset Alzheimers based on her short term memory loss, symptoms of dizziness and disorientation.
Before learning of Lyme, many patients are confused by the seemingly sporadic and eclectic symptoms they experience. They are tested for lupus, multiple sclerosis, and amyotrophic lateral sclerosis before most Canadian doctors even consider Lyme disease as an option.
In extreme though not uncommon cases, patients are referred to psychologists and psychiatrists because doctors believe their symptoms are completely psychosomatic.
Antibiotics: The First Line Of Lyme Disease Treatment
Right after her diagnosis, Rachel began oral antibiotic treatment using Doxycycline, and taking probiotics to maintain balance of her intestinal bacteria. Antibiotics are the only proven way to kill off the bacteria that cause Lyme disease.
Previously, it was common practice for doctors to prescribe just one round of antibiotics, regardless of the stage of the disease, however it is now believed that such a prescription would not be effective in treating more chronic cases. This is especially true considering cases which have been left untreated for longer periods of time and need long term treatment plans.
Doxycycline, Rachels prescribed antibiotic, had certain unpleasant side effects including extreme nausea. The nausea made her feel as though her symptoms were worsening, when in fact, the opposite was the case.
The bacteria release toxins as they die, resulting in what are called Herxheimer reactions. Lyme patients experience Herxheimer reactions as seemingly worsening symptoms or pain as the bacteria are being killed.
Since the bacteria dont die at fixed intervals, the more intense symptoms are very sporadic.
Rachel mitigated the nausea by taking antibiotics on a full stomach and with anti-nausea medications.
Ultimately, it was doxycycline that eliminated the infection, but throughout the recovery process, it was the treatment with the most severe side effects. Rachel spent 8 months on Doxycycline and subsequently took other antibiotics.
What To Do When Serologic Testing Is Negative But Lyme Is Still Suspected
The problems with the conventional two-tier testing strategy for Lyme disease have initiated the development of new tests from independent labs intended to offer higher sensitivity and specificity.
As the first step in the diagnosis of Lyme, we often recommend serologic tests, including the ELISA, the Western Blot, and the Immunoblot. This new test is more sensitive than the Western Blot and is designed to take its place.38 Serologic Lyme tests can be done through Stony Brook University, Quest, LabCorp, or IGeneX.
If serologic tests come back negative and Lyme is still strongly suspected, we may recommend molecular testing such as the test offered by Global Lyme Diagnostics. The GLD tests antibodies to B. burgdorferi outer surface proteins, expanding the number of species and strains that can be detected.
We may also recommend Elispot T cell activation tests. These tests are run by labs such as InfectoLab and Armin Laboratories, and look at T cell activation for the pathogens. This may be a better indicator of current or recent infection and lead to a more accurate diagnosis.
However, it is important to remember that the testing for Lyme and other tickborne pathogens is still far from perfect, and we always focus on your individual case and symptoms. Lyme disease is primarily a clinical diagnosis and the tests are used as supportive aids.
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Can Lyme Disease Be Prevented
Most people with Lyme disease get the infection during the late spring, summer and early fall when immature ticks are out feeding. In warm climates, few tick bites take place during winter months.
Deer ticks are most often found in wooded areas and nearby grasslands. Theyre especially common where the two areas merge, including neighborhood yards where deer occasionally roam. Ticks dont survive long on sunny lawns. They dry out quickly and die.
Although only about 1% of all deer ticks carry Lyme disease-causing bacteria, there are areas in which over 50% of the ticks carry the bacterium. The diseased ticks are often found in the U.S. Northeast and upper Midwest areas. Ticks also live in coastal areas.
Black-legged ticks can get the infection from animals other than deer. Mice, voles and some squirrels can carry the bacteria.
How can I prevent tick bites?
The following tips can help you avoid tick bites:
Where Are Ticks Found
Ticks are found throughout the UK and in other parts of Europe and North America. There are a high number of ticks in the Scottish Highlands.
They can be found in any areas with deep or overgrown plants where they have access to animals to feed on.
They’re common in woodland and moorland areas, but can also be found in gardens or parks.
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Borrelia Impairs Immune Function And May Increase The Risk Of Other Infections
Borrelia burgdorferi impairs its host’s immune function, allowing it to evade the immune system and persist in the body undetected.20 This subsequent immune suppression makes the host more susceptible to opportunistic infections, further harming the body.21 Heavy-handed use of antibiotics for Lyme disease can also disrupt the gut microbiome, accelerating the growth of opportunistic gut microbes such as Candida albicans. This is just one reason why a functional medicine approach, which may combine the judicious use of antibiotics with other non-antibiotic antimicrobial therapies, and gut healing protocols, can be so beneficial.
Try A Recipe From My Book
Sesame Chicken Salad
This refreshing salad manages to be both sweet and savory, with a lovely crunch thanks to the addition of slivered almonds. It requires very little prep time, especially if you make the shredded chicken ahead of time in a slow cooker.
The short amount of prep time required is perfect it youre short on time or energy for cooking. This salad contains several functional food ingredients beneficial for those with Lyme disease, including vitamin C-rich oranges and lime juice, folate-rich leafy greens, and anti-inflammatory extra-virgin olive oil.
Prep Time: 10 minutes
- 4 ounces cooked chicken breast
- 2 tablespoons slivered almonds
- 1 cup fresh orange segments
- 2 scallions, chopped
- 1 tablespoon toasted sesame seeds
- 1 teaspoon peeled and grated fresh ginger root
- 2 tablespoons tamari sauce
- 2 tablespoons rice vinegar
- 1/3 cup extra-virgin olive oil
- ¼ cup freshly squeezed orange juice
- 2 teaspoons toasted sesame oil
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How You Get Lyme Disease
If a tick bites an animal carrying the bacteria that cause Lyme disease, the tick can become infected. The tick can then transfer the bacteria to a human by biting them.
Ticks don’t jump or fly. They climb on to your clothes or skin if you brush against something they’re on. They then bite into the skin and start to feed on your blood.
Generally, you’re more likely to become infected if the tick is attached to your skin for more than 24 hours. Ticks are very small and their bites are not painful, so you may not realise you have one attached to your skin.
Whats Preventing Your Recovery From Lyme Disease
As we begin a new year, I have spent time reflecting on what is preventing many people with complex chronic illnesses, including Lyme disease, from getting better.
If youre one of the many people struggling to recover from chronic illness, I offer some thoughts for your consideration.
So, what is preventing people with chronic illnesses from getting better?
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What Is The Outlook For Someone With Lyme Disease
Most of the people who get Lyme disease and receive treatment early will be fine. Treatment can cure Lyme disease but you might still have some long-term effects. Untreated Lyme disease may contribute to other serious problems but its rarely fatal.
Post-treatment Lyme disease syndrome
Even after proper treatment, some people may experience lingering fatigue, achiness or headaches. This is known as post-treatment Lyme disease syndrome or PTLDS. The symptoms dont mean that you still have an infection. PTLDS probably wont respond to additional antibiotics. The majority of people in this group will have symptoms that resolve at some point over the next six months.
Chronic Lyme disease
Chronic Lyme disease is a term used by some for a condition in a person who had Lyme disease and the symptoms of PTLDS. Some people consider chronic Lyme disease to be the same as PTLDS. However, some people receive a chronic Lyme disease diagnosis without a Lyme disease diagnosis. Sometimes, extended treatment with antibiotics helps.
This term may be why some people think a Lyme disease infection can occur without being bitten by a tick. There isn’t enough proof that mosquitoes can transmit Lyme disease. Many researchers dislike using the term chronic Lyme disease.
Treatment For Chronic Lyme Disease
Sometimes, people go through treatment for Lyme disease but their symptoms donât go away. If this lasts over 6 months, itâs known as chronic Lyme disease or âpost-treatment Lyme disease syndromeâ .
Doctors still arenât sure why some people get PTLDS. Some believe that getting Lyme disease may cause damage to your tissues or immune system. Others believe itâs because the bacteria that causes Lyme hasnât completely gone away.
There is little evidence that taking more antibiotics at this stage will help. They may actually be harmful. Instead, your doctor will focus on treating the symptoms youâre still having. This will be different for everyone. Some people could benefit from a medicine that relieves fatigue, while others may need a drug that can help with headaches or very sensitive skin.
Your doctor could also have you try a treatment that helps people with chronic fatigue syndrome or fibromyalgia.
More research is needed to figure out how best to treat PTLDS. Itâs something that can be frustrating. Just remember: Many people who have this condition do start feeling like their old selves after a few months.
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Where Are Ticks Carrying Lyme Disease Found
Though Lyme disease occurs in every state, risk of infection varies. The vast majority of cases are from the Upper Midwest, the Northeast, and the Pacific case, though recent changes in deforestation, and migrating bird and deer populations have impacted these statistics. Ticks are most often found in farm fields, wooded areas, shrubs and long grass.
How To Avoid Tick Bites
To reduce the chance of being bitten:
- cover your skin while walking outdoors and tuck your trousers into your socks
- use insect repellent on your clothes and skin products containing DEET are best
- stay on clear paths whenever possible
- wear light-coloured clothing so ticks are easier to see and brush off
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I Took A Different Approach To Conventional Lyme Disease Treatments
I based my recovery plan on a simplified version of Dr Klinghardts protocol, combined with info from other Lyme Literate MDs & Healers, Naturopaths & my own extensive research.
I didnt take any pharmaceutical antibiotics, but used powerful natural antimicrobials instead. I reduced the toxic load, removed pathogens, viruses and bacteria and kicked my immune system back into action so my body could deal with the Lyme itself.
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Antimicrobial And Immune Support Therapies
Targeted antimicrobial nutrients, botanicals and antioxidants can help treat infection while also modulating immune and inflammation responses. Garlic and its derivative, allicin, is a treatment often used for addressing Lyme disease.
Other botanicals, including curcumin from turmeric, cats claw, Boswellia from frankincense, astragalus and prickly ash bark, can also be helpful in addressing infection. One formula consisting of a combination of artemisinin, whole herb Artemisia annua and an Artemisia annua extract is recommended because it may be more effective and better tolerated than the single ingredient artemisinin, which is commonly used in Lyme disease treatment.
I also recommend IV glutathione with phosphatidylcholine , as part of a modified Lipid Exchange Therapy for neurological conditions, including Lyme. PC helps dislodge toxins from cell membranes, followed by glutathione, which helps the body to neutralize and excrete the toxins. Vitamin C IVs are also helpful for addressing infection, inflammation and immunity.
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What Causes Lyme Disease
Lyme disease is caused by bacteria. In the United States, this is usually a bacterium called Borrelia burgdorferi. It spreads to humans through the bite of an infected tick. The ticks that spread it are blacklegged ticks . They are usually found in the:
- Pacific coast, especially northern California
These ticks can attach to any part your body. But they are often found in hard-to-see areas such as your groin, armpits, and scalp. Usually the tick must be attached to you for 36 to 48 hours or more to spread the bacterium to you.
What Are The Treatments For Lyme Disease
Lyme disease is treated with antibiotics. The earlier you are treated, the better it gives you the best chance of fully recovering quickly.
After treatment, some patients may still have pain, fatigue, or difficulty thinking that lasts more than 6 months. This is called post-treatment Lyme disease syndrome . Researchers dont know why some people have PTLDS. There is no proven treatment for PTLDS long-term antibiotics have not been shown to help. However, there are ways to help with the symptoms of PTLDS. If you have been treated for Lyme disease and still feel unwell, contact your health care provider about how to manage your symptoms. Most people do get better with time. But it can take several months before you feel all better.
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Early Localized Lyme Disease
This stage of the disease lasts 1 to 4 weeks. If you notice the rash and see a doctor right away, you may not develop symptoms. Treatment is a two-week course of antibiotics, usually doxycycline, though the healthcare professional may prescribe amoxicillin or another antibiotic to children and people who are pregnant or nursing.
If you have symptoms, they are similar to the flu: fatigue, achiness, chills and fever. You may have a stiff neck or swollen lymph nodes. Because these symptoms are so common, Lyme disease can be hard to diagnose. If you have been in the woods or another area that could have a tick infestation, tell your doctor. In this early stage of Lyme disease, your recovery time will be about two weeks and you should have no lingering effects.
Treatment For Erythema Migrans
People treated with appropriate antibiotics in the early stages of Lyme disease usually recover rapidly and completely. Early diagnosis and proper antibiotic treatment of Lyme disease can help prevent late Lyme disease.
Treatment regimens listed in the following table are for the erythema migrans rash, the most common manifestation of early Lyme disease. These regimens may need to be adjusted depending on a persons age, medical history, underlying health conditions, pregnancy status, or allergies. Consult an infectious disease specialist regarding individual patient treatment decisions.
|30 mg/kg per day orally, divided into 2 doses||500 mg per dose|
*When different durations of antibiotics are shown to be effective for the treatment of Lyme disease, the shorter duration is preferred to minimize unnecessary antibiotics that might result in adverse effects, including infectious diarrhea and antimicrobial resistance.
NOTE:For people intolerant of amoxicillin, doxycycline, and cefuroxime, the macrolide azithromycin may be used, although it is less effective. People treated with azithromycin should be closely monitored to ensure that symptoms resolve.
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This Center For Adults & Children Provides Affordable Care Training And Research Treatments
The Cohen Center for Health and Recovery, combining patient care and research for Lyme disease and other tick-borne diseases, was launched in August 2021 at Columbia Universitys Vagelos College of Physicians and Surgeons. Due to our long waitlist, we are not currently scheduling new patients. Please return to this webpage periodically for updates on when we will resume seeing new patients.
Tick-borne diseases are multi-system illnesses involving the skin, muscles, joints, the heart, peripheral nerves, and/or the brain. While early Lyme disease usually responds well to rapid treatment, later Lyme disease manifestations can be more challenging to treat. The CDC estimates that there are 476,000 newly diagnosed and treated cases annually. Each year, despite antibiotic treatment, approximately 10-20% of these new infections will lead to distressing and potentially disabling symptoms, such as severe fatigue, joint and muscle pain, neurologic symptoms, irritability, depression, sleep disturbance, and cognitive problems, that may last for months or years. Because these tick-borne infections can trigger disturbing physical and neuropsychiatric symptoms, clinicians without specialized training in tick-borne diseases may be uncertain how to help these patients. Our Center offers evaluation and treatment by clinicians with expertise in the evaluation and treatment of tick-borne diseases.
Our services include:
- Kristen Kendrick, DO