This blog post is for those who have come home after a hike in the woods with a tick whose hitchhiked a ride at your expense because you look like its next scrumptious meal. It's also happens to be Lyme Disease Awareness month once again and I'm speaking out for the millions of Lyme disease warriors...
Who have struggled to get an accurate diagnosis and quality treatment
Who have been told by physicians that it's all in their head
Whose goal is often simply to make it to the end of the day
Who have disappeared slowly from society
Who have lost their jobs, resources, and relationships
Who fight the stigma associated with an "invisible illness"
My hope is that you'll never be familiar with this list above so it is my aim and goal to funnel and narrow down the abundance of information (and misinformation) out there into an easy to read and helpful resource for you. You won't hear this from your primary care physician (it's complicated and political) but loud and clear from the millions of individuals who have walked the journey and fought the battle. Let's clear a few things up first....
Lyme Facts: The Ones Your Doctor Won't Tell You
Myth: Lyme Disease is from a tick and must be accompanied by a erythema migrans (bulls eye) rash.
Fact: While it is ticks primarily that carry Lyme disease it has also been found to be transmitted through spiders and mosquitoes as well. Only about 27-80% of individuals bitten by a tick with Lyme show the classic "bulls eye" rash and approximately 40% of people with chronic Lyme recalled a rash (source). This is not a prerequisite for a diagnosis. Nymph ticks are as small as a poppyseed and easy to miss when attached to the skin.
Myth: Once bitten by a tick infected with Lyme you will show signs of Lyme disease immediately.
Fact: The individuals response to the spirochete bacteria is usually reflective of the strength of the host's immune system at the time of the bite. Many are bit by a tick who posses a very robust and healthy immune systems and thus their body possesses the ability to suppress it. Lyme spirochetes are masters at hiding inside the host's body until a more opportune time to come out and wreak havoc. Oftentimes triggers such as stress, toxins, mold, and an acute illness can suppress the immune system to such a degree that Lyme will awaken and spread systemically beginning to weaken the immune system even more leaving individuals confused as to what caused the illness due to a delay in symptoms that began later on (sometimes years after).
Myth: Lyme disease is hard to catch and easy to treat.
Fact: Many individuals aren't aware they've been bitten by a tick because many are bit from the nymph (immature) form of the tick which are the size of a poppy seed. While difficult to know for certain how many ticks are infected it is suspected that up to 70% of ticks carry the Lyme bacteria in certain areas source. Physicians often forgo testing patients for Lyme disease due to outdated data on endemic vs. non endemic areas. Furthermore, when the infection continues past the acute stage (4-6 weeks) the Lyme is increasingly more difficult to treat and often takes months or often years and multiple approaches and vast resources to heal. Many Lyme patients go to exhaustive measures treating with high dose antibiotics, herbs, ozone therapy, bee venom therapy, intravenous treatments and much more.
Myth: Twenty one days of doxycycline is enough to cure and rid the body of Lyme disease.
Fact: If you're one of the few lucky ones to find a knowledgeable physician who will test and get a positive Lyme test and are given several weeks of antibiotics to fight off an acute infection you may stand a fighting chance to eradicate the disease. If you miss this window of opportunity and your immune defenses are down this flexible and spiral shaped bacteria will exit the bloodstream and begin to bore into the bodies tissues. From there it will begin to infect the tissues, joints, muscles, and every nook and cranny from head to toe. The insidious bacteria is a stealth pathogen that evades the immune system and is able to hide itself in biofilm and cyst forms making it extremely challenging to treat. At this point there is no going back... but remission is possible!
Myth: Lyme testing is an accurate tool to diagnosis Lyme disease
Fact: "According to a new study, the CDC’s standard two-tier testing for Lyme disease failed to accurately diagnose more than 70% of blood samples from individuals with an erythema migrans rash greater than 5 centimeters across" source. Furthermore, "The saliva of infected ticks contains specific immune-suppressing components that can delay or prevent the activation of a person’s immune response. These components are designed to prevent the body from effectively “fighting off” the Lyme disease-causing bacteria, so it has a chance to take hold source. Physicians need to rely on their knowledge of the signs and symptoms of early Lyme disease to diagnose patients and provide prompt and essential treatment.
Discouraging as it may sound the remainder of this post will hopefully help to empower you with essential knowledge so that if you do encounter a tick bite or begin to show symptoms of Lyme disease you will know how to take action!
What To Do If You've Been Bit By A Tick
When removing the tick DO NOT squeeze, turn and twist, or squash it into your skin. Use fine point tweezers or a tick removal kit and pull straight up as you do so. Immediately clean the skin and your hands.
Keep the tick! Place it in a small plastic bag (keep one in your car with you for this reason) and put a green leaf or a damp napkin or tissue in bag.
Label the bag with your information, location of bite and date of the bite.
Send the tick off to either of the websites listed below to be analyzed for Lyme bacteria.
Tick Report: https://www.tickreport.com
Ticknetics: https://ticknetics.com/ *Use coupon code "holisticheartbeets" for 10% off.
What To Do If You Become Symptomatic
Stephen Buhner, who developed the Buhner protocol to treat Lyme disease, recommends "taking astragalus – 3,000 mg daily for 30 days, 1,000 mg daily thereafter, indefinitely. Also: using a paste made of andrographis tincture mixed with green clay, the paste applied on the tick bite area can often prevent an active infection." source.
It's imperative to strengthen your immune system during this time! Give your body the nourishment it needs in the form of real whole food, prioritize a good night's sleep, eliminate environmental toxins, and decrease stress as much as possible. Cut out all forms of sugar, dairy, gluten and simple carbohydrates that weaken the immune system and feed bacteria. Incorporate supplements as needed. You can read more about how to do so and recommended supplements to boost the immune system here.
If you begin to present with any symptoms from the list above seek out a Lyme Literate Medical Doctor or Naturopathic Doctor immediately to be evaluated, tested, and to begin treatment. Lyme disease is a clinical diagnosis and physicians should take a patient's health history, exposure, and symptoms into consideration rather than the current poor testing available. There are several different approaches to treating Lyme disease (conventional antibiotic route, herbal route, a combination of both, ozone, rife, and many others). The choice is a personal one but it is important to initially be seen to rule out other serious health conditions and undergo testing (despite its flaws). To find a LLMD you can go to iLADS.org or ask in any online Lyme forums. As a personal side note, I did not receive any help from the conventional medical community after seeing 20+ doctors and don't know other Lyme patient that have either. Most doctors will either persuade you not to test, downplay the disease altogether, or not take you seriously. For more information you can check out my resources section.
What to Do To Be Your Own Advocate
I speak from truth and experience...if you haven't learned to speak up for yourself you'll soon comprehend the necessity in this particular situation when your health is at stake and you suspect you have Lyme disease. Various physicians may dissuade you from getting Lyme testing and discredit the disease entirely. Be prepared that you will get passed along to other specialists time and again...it's a dead end road that can be emotionally and financially draining. I suggest the following:
Plan out your doctors visits in advance and doing your research ahead of time. Doctors have little time and when you have much to go over it's helpful to think through the bullet points you need to hit on in your medical timeline.
Make a detailed list of all the questions you want answered.
Make it clear what you want to be tested for and respectfully hold your ground.
Remember your physician is a well educated man/woman but doesn't know all there is to know! It's OK to ask questions, share with them some of the latest research on Lyme, or encourage them to do their own.
You're doctor works for you...you hired them and you can can fire them.
What To Know To Prevent A Tick Bite
Sometimes life happens and circumstances are unpreventable yet it's still wise to take precautionary measures to avoid unnecessary suffering. Keep the following tips in mind to avoid ticks and prevent Lyme disease:
Always wear protective clothing while out hiking to ensure your skin is covered (especially around the ankles) and avoid straying from the path.
Keep in mind a ticks habitat: grassy areas, piles of leaves, bushes, and logs.
Periodically check your skin to make sure there are no ticks crawling on you.
After a hike do a full body scan and consider taking a shower to wash off any unattached ticks.
Wear a nontoxic tick repellent spray before going outdoors.
Keep a tick removal kit in your car permanently while away from home.
How To Reach Out For Help
If you or someone you know has contracted Lyme disease and are looking for support with:
Creating a plan and developing a healthy lifestyle to support healing.
Education about how nutrition, stress, and lifestyle factors influence healing.
Different way to incorporate detoxing into your protocol.
Trying to figure what doctor to see and what testing should be done.
A safe space to process the challenges, difficulties, and losses that accompany Lyme.
I am available for one on one health coaching sessions to support you and walk by your side. Please reach out to me for a complimentary consult to learn more about how partnering with me can help you along your healing journey. Together we thrive!
Stefanie is a Certified Functional Medicine Health Coach & Holistic Nutritionist whose passion for health and wellness was sparked when her health took a turn for the worse. After seeing 20+ physicians she was diagnosed with Lyme disease and Chronic Inflammatory Response Syndrome. She sought to heal her body so that one day she could help those still on the other side with the knowledge to help and the compassion to relate.
For more information and resources about Lyme Disease check out my "Resources" section.
The Centers for Disease Control and Prevention estimate that 400,000+ people are diagnosed with Lyme disease in the US every year. That’s 1.5 times the number of women diagnosed with breast cancer, and six times the number of people diagnosed with HIV/AIDS each year in the US. However, because diagnosing Lyme can be difficult, many people who actually have Lyme may be misdiagnosed with other conditions. Many experts believe the true number of cases is much higher. source
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