Tick bites, Lyme & the Disease divided.
Tick Bites, Lyme and the Disease Divided:
A Resource for Lyme Disease
Lyme Disease is everywhere, and growing fast. The notion that this debilitating disease only dwells in the northeastern region of the United States, a place that I call home, is, frankly, preposterous. Likewise, the concept that only ticks carry Lyme is equally frustrating. According to well respected, veteran Lyme Literate M.D., Dr. Dietrich Klinghardt and many more practitioners who treat Lyme patients primarily, it’s agreed that Lyme is carried not only by ticks but additionally fleas, mosquitoes, some spiders, mites, lice & biting flies. While this is not to scare anyone, it’s meant to be used as a cautionary yet educational tool. Not all insects carry Lyme, but many do, to be armed with knowledge is the best thing we can do.
It’s a daily event that I see women, parents, young adults and even grandparents across the world, posting frantically within my numerous Lyme forums. They remind me of myself in our previous life, before we were thrown into the rabbit hole of Lyme & environmental illnesses.
Their questions about tick-bites, rashes and all things à la novice Lyme, inspired me to write this. For anyone new to this, take a deep breath. I see your confusion and I will try my best to help you understand the disease, and the divide.
While I strive for objectivity, surely my emotions will come to light. This story is my experience, knowledge & studies of Lyme. Stacks and stacks of books, years of research, and a mother determined to save herself, her family and help those who may resonate with what I have to say.
Prepare like they are everywhere
With Lyme Disease rising and expected to reach high numbers this summer, it’s best you prepare before you get bitten. It’s also important to understand, if you are outdoors, spring, summer, autumn, winter, you should take preventative measures. To be outside means you take a risk. It takes temperatures below 10 degrees to kill ticks, and our winters are milder now.
It’s a different world than I knew as a child, and that realization alone, I can’t express enough.
Ticks are everywhere.
After being bedridden from mold toxicity, Lyme and a number of other environmental issues making me Tox-sick, I had spent a majority of a year in our bedroom, unable to leave the house. When the first 80 degree day came, I decided to venture out to our front steps and enjoy the floral air.
It wasn’t 15 minutes before I looked down, feeling a tickle on my arm. There it was! A tiny, creepy-crawling, tick, my mortal enemy. I couldn’t believe it, I was legit sitting on concrete! I scare-screamed like a baby just because of the circumstances. The sheer thought of contracting more pathogens, more co-infections, more sickness is pure terror for a Lyme & Mold sufferer. When I looked around I saw a potted flower next to me and realized he hid in there, just waiting to hop on whoever came out the door.
Nonetheless, my point’s made, I hope.
There are some places & activities that you should be extra cautious of:
Hiking, Camping, Walking on trails
Beach Grass, Sand Dunes, Walking the beach
Off-road biking
Concerts, Festivals, Picnics, Firework displays
State Parks, Any park, Any high grass
Hunting, Fishing
Golf, Baseball, Lacrosse, Field Hockey, Outdoor Sports
Gardening, Grass Cutting
Playing in the leaves
Horseback riding
Someone might think, beaches? Weird right?
Here in my home state of Delaware, we have high tick populations at our beaches. Ticks love to populate the dunes and seem to favor nesting there.
My daughter Zoe once stepped into a tick nest and had hundreds of baby nymphs all over her ankles. It was a moment cemented into her memory. Needless to say, her fear of ticks is warranted. Eeeeek.
Ticks will latch on while you’re moving, so be aware: you don’t have to be standing still or sitting, for them to catch a ride.
Some say that ticks don’t go up into trees, but in my husband Peter’s experience, his yard was once infested and ticks were jumping out of the tree branches! Fact: Ticks are attracted to the CO2 of human breath.
Almost all bugs including ticks and fleas search for potential hosts by sniffing out carbon dioxide. Humans and animals all give out carbon dioxide while exhaling and especially while sleeping. Ticks reach out to potential hosts by tracking the carbon dioxide levels and heat radiated by them.
Teach your kids about ticks, talk to friends, teachers, doctors, your community. Talk about places they might like to hide and that it’s essential for everyone to check daily if they are outdoors a lot. Talk about Lyme Disease and that it’s spreading, fast.
As much as I don’t believe in fear campaigns, I do respect the truth, and Lyme Disease should be a huge concern, especially for kids.
When’s the last time you heard about Lyme Disease?
Tips for prevention
PREPARE now, so you aren’t in a panic when you encounter a tick bite. There are tools to use for tick removal, and treatment options, like essential oils, herbs or homeopathy. These can be used at home, are easily attainable and can help lessen the chances of contracting chronic Lyme. We recommend building your emergency tick kit asap.
UNDERSTAND how a tick bites and its anatomy. This will give you the insight that relays the importance of the tick removal tool. You won’t feel it as they pump saliva into the skin which has special properties to numb the bite area, so the host doesn't feel the tick feeding. It keeps the blood from clotting so the tick can continue to feed for a number of days until it’s full.
a ticks mouth
When seen with a microscope, a tick’s mouth has what looks like twin saws (chelicerae) with an appendage (a hypostome) in between those. The hypostome looks like a long, jagged or barbed sword.
As it cuts, it looks as if it is doing the breaststroke with its pair of minuscule mouth saws. That movement cuts and pulls back the skin, plunging the hypostome deeper with each stroke, barb by barb, which, of course, makes them difficult to extract.
PROTECT your bare skin by wearing compression shorts, long pants, sleeves, high socks, and/or tucking pants into socks. I know, it’s a pretty hot look.
Wearing white makes the ticks more visible, but is more visibly attractive to ticks. Dark clothing is less attractive to ticks, but more attractive to mosquito’s! Additionally, black makes it very difficult to see any ticks on yourself or your child. Catch 22. Our best recommendation is to wear lighter colors when trekking in buggy areas. Closed toed shoes, are also a definite- which if you know me, I have never been a fan of flip flops anyway.
There is gear available if you must work outside in an endemic area. Keep in mind, we do not promote Permethrin treated clothing, especially for children and would not wear this ourselves. Permethrin has been shown to be a neurotoxin and is classified by the EPA as a likely carcinogen. However, the gear is shown to work well preventing ticks. We feel risk should be researched individually and is a personal choice. (We are not affiliated)
AVOID areas where ticks & insects thrive. Wooded areas, thick brush, wood piles, leaf piles, long grass, dunes and beach grass. Stone walls are frequented by mice & rodents that can leave ticks behind, so it’s important to be particularly careful in these areas. Bird feeders are helpful since birds feed on ticks.
PURCHASE a tick removal tool. Tweezers, while usually the easiest thing to find in your home, are not ideal, and no matter how careful you are, you still run the risk of passing bacteria if you do not have a tick removal tool on hand. It’s best to be prepared considering it’s highly likely you will have a run in. The tick removal tool is very inexpensive.
APPLY Tick & Insect repellent. Treat your yard. Treat your pets. We are a non-toxic family, and use essential oils for skin protection. We can no longer handle toxic ingredients of any kind. Some of my favorites oils to use are oregano, thyme & bergamot since they contain carvacrol & thymol. Badger Organic & Wondercide™ also make non toxic bug sprays, if you are not into making your own. We have been successful with oils, particularly the ones I mentioned.
You can also take herbs which are known to prevent insect bites and support your immune system. Cistus incanus, also known as Mediterranean rock rose, is an herb recommended by Dr. Dietrich Klinghardt to prevent ticks and other insect bites. General dosings are as follows: BioPure Cystus Tincture: 2 droppers 3 times per day or for BioPure Cystus Tea start with 2 cups per day & you can increase to 8.
Stephen Buhner, renowned master herbalist specializing in Lyme Herbs, recommends Astragalus to optimize immune function taking 1,000 mg per day. 10 drops of the tincture to the diet of the one year old 3x daily.
I have a good friend who uses the herb, Andrographis. It has immune strengthening and preventative effects as well. 1 dropper 2-3 times per day.
For a homeopathic remedy, there is Ledum Palustre . Its botanical name is Rhododendron Tomentosum and is used for insect bites, bee stings, arthritis, eczema and paresthesia.
If you’re unable to find 200c, 30c will work fine as well, with the same instructions. -Every 3 hours for the first day -Twice a day for the next week -Twice a week for the next month -Once per week for another month according to Dr. Jay Davidson
For an overview of tick repellents click here.
Tick repellent
10 drops clove oil
10 drops vetiver oil
10 drops citronella or bergamot oil
6 drops oregano oil
4 tbsp fractionated coconut oil (or fill up a glass spray bottle with water + the essential oils for a diluted spray version)
4 oz glass dropper bottle
Combine all oils in a glass dropper bottle. Apply about 7 – 10 drops on exposed skin just like a lotion before heading out. (Keep in a dark place.)
PROTECT your lawn/yard & Pets. While I love trees, it’s safest to have a yard with high sunlight, (less mold too) short grass, and no piles of wood, rocks, or grass clippings.
With our cat, we have struggled with fleas previously. It’s a rule in our home that shoes be kept at the door, and I recommend Diatomaceous earth to sprinkle around the yard. It is not harmful and it can be used to treat fleas indoors, which you can learn more about here. It kills by physical action, not chemical and is something I wish I had known sooner. This is a brand we recommend, or you can find it easily yourself, just make sure you are getting a good quality.
EXAMINE yourself, your kids and your pets for ticks, bites & rashes daily. Check everywhere — ticks love to hide!
Children are at the most risk of becoming infected so it’s something parents should be prepared for. We should all be checking young children consistently.
Our kids are teens and older, but it doesn’t stop me from literally waiting outside the bathroom as they check themselves. I still will do a body scan of their back and head, behind the ears and armpits. Considering we all have Lyme already, we are extra careful.
Ticks hide in warm, moist places, such as the groin, back of the knees, armpits, the back of the neck, navel, and ears, but ticks will feed anywhere on the body, so look carefully.
A primary spot for boys is under the testicles, so do not skip this area -If your kids are big guys be sure to tell them to check themselves. It’s not even summer yet and we already had a traveler on my son just from going to school.
The nymph is only the size of a pinhead and may be missed during your daily examination. Be sure to feel skin for any tiny bumps that might indicate a tick, especially on the scalp. If a bump is found, do not squeeze or press the bump.
when you find a tick
removing a tick
If a tick is attached to your skin, it needs to be removed properly and promptly.
Use the tick removal device (link above) to spin and remove the tick. This is the best way, so preventative measures are necessary to purchase ahead of time.
If you must, you can use tweezers, but it’s not recommended. (Ticks have jagged mouths that are deeply embedded into the skin)
With tweezers get as close to the skin as possible, apply steady & even pressure, & gently pull the tick upward from the opposite direction from which it is embedded.
DO NOT squeeze, twist or jerk the belly of a tick. This will increase the risk of infection and you may also tear apart the tick leaving part of it embedded in the skin.
DO NOT try to burn the tick with a match or douse it with alcohol, creams or nail polish remover. This will only irritate the tick and make it dig in harder, passing more pathogens.
The longer the tick is attached, the greater likelihood of transmission of disease.
There is no real proof that a tick must be attached for a certain number of hours to transmit. Use caution no matter what.
For more information and items to add to your Prevention Kit, such as Tick ID cards and magnifiers, the GLA (Global Lyme Alliance) has more items here.
Testing for Ticks
Place tick in a zippered plastic bag or sealed container with a damp cotton ball or blade of grass to bring to your local health department or private lab for testing, if they provide this service. The blade of grass or dampened cotton ball provides moisture to keep the tick alive. Both dead and live ticks may be tested, but live ticks yield quicker test results.
You can also simply flush down the toilet. A tick should never be crushed with your fingers.
Check out the Global Lyme Alliance website here or Tick Encounters here for detailed information & instructions with regard to having ticks tested. Tick Encounters gives the option to mail in a Deer Tick, American Dog Tick, or Lone Star Tick. For $50, they will test for various strains of Borrelia and other co-infections, such as Babesia microti, Rocky Mountain Spotted Fever, and Ehrlichia chaffeensis. By testing the tick, you will for sure know if you or your child has been exposed. Some states also offer free testing
treatment options for tick bites
If you are in a metropolitan area that offers it, you can inject the bite with ozone. This is recommended within 72 hours of getting a bite.
Doxycycline 200 mg twice daily for 3 weeks or doxycycline 100mg twice daily + minocycline 100mg twice daily for 3 weeks. (Children under 8 cannot take Doxy and would be on Amoxicillin 50-100 mg/kg per day orally, divided into 3 doses for 21 days)
Probiotics should always be a part of the treatment plan when using antibiotics. A spore based probiotic should always be used rather than conventional probiotics for optimal health. We like Just Thrive’s brand.
BioPure Cocktail Tincture, Hyaluronic Acid Tincture and Cistus Tea and/or Tincture
Astragalus 3,000mg daily for 30 days & decreasing to 1000mg per day indefinitely.
Andrographis tincture and green clay. Mix the two ingredients together to make a paste and apply to the tick bite area, as a way to prevent active infection.
so, NOw what?
Most people will tell you to run and get tested for “Lymes”. Ok, just so you know, there is no such thing as “LymeS”.
Lyme Disease is pronounced & written as LYME, always, both singular & plural.
I don’t know where the “S” got added, but I decided to make a note so we can recognize the error.
While this may seem nominal to some, it is important in the bigger scope.
We have enough issues w/ Lyme Disease already. Admittedly, I am a grammar, spelling, pronunciation & diction aficionado, so those kind of things have meaning to me. There is absolutely no judgement here, just spreading formal awareness.
Testing
Before we go any further, I want to express our opinions on testing. We don’t put everything into it.
Why?
It’s stressful, costly and often not conducive to getting you better. Lyme is also a clinical diagnosis. Meaning you don’t have to have a positive Lyme test to have Lyme Disease.
The level of technology we have with Lyme tests is poor, and in our own personal story, I knew we all had Lyme due to our symptoms, my intuition and what our Lyme Literate doctor stated later on. I found myself wanting tests to prove to other people and even myself, because I was gas-lit and doubted so much. In the end, they still didn’t believe me or anything I expressed and testing didn’t make a difference in beginning my treatment of Borrelia.
Methods of testing
The standard method of testing in the United States is with a two tier test method called the ELISA and the Western Blot. Both are inaccurate, and both are testing you for antibodies. Although of the two, the western blot is better.
ANTIBODY: a protective protein produced by the immune system in response to the presence of a foreign substance, called an antigen. Antibodies recognize and latch onto antigens in order to remove them from the body.
There is other testing called PCR that looks for Lyme DNA in the blood, however, the blood is not a place stealth microbes like Borrelia like to hang out. Borrelia likes to drill deep in your tissues, and can even hide in what’s called biofilm. It can enter your cells, and can evade the immune system by changing forms. It takes as little as a few minutes for it to change from its natural spirochete form to cystic form, which is 1000x’s more protective than the spirochete. It does this when feeling threatened or it doesn’t like the conditions of your body at a certain time. These cysts are so stealthy, they can survive 600 degrees centigrade as well as hydrochloric acid.
In my State of Delaware, we just passed a law that patients who get tested for Lyme MUST be told the testing is inaccurate. This means if you come up negative, it does not mean you don’t have Lyme Disease.
Another myth…
“Lyme frequently comes up false positive”.
This is incorrect. It’s highly unlikely and rare to come up saying you have Lyme when you actually don’t.
The CDC requires you to have positive antibody markers on the ELISA test first, and then only after it’s positive, they will require multiple antibody markers or bands on the Western Blot. This doesn’t happen in most people. Lyme is not only known to cause a wealth of symptoms but it suppresses the immune system.
Having tests based solely on measuring those immune markers of activity, it’s pretty much a no brainer. If you’re sick, and not producing antibodies, why would you be able to produce them for a test, let alone multiple ones?
So when you hear people saying I have Lyme but I am not “CDC positive” it means they didn’t meet the CDC high expectations of testing requirements, which for Lyme warriors, really means nothing. It’s honestly just another low blow aimed at our integrity.
Lyme Test ACCURACY
Now that we understand the methods are not sufficient, the next issue is the testing sensitivity and accuracy.
To simplify, The ELISA is like a general antibody test, and the Western Blot looks at multiple antigens found on the Lyme bacteria and measures the antibodies or “bands”. The tests will look for two types of antibodies.
Acute (early) infection is evaluated with IgM antibodies
Late acute or chronic infection with IgG antibodies.
The IgM antibodies show acute Lyme disease. Testing can be positive as early as one week after infection, and remains positive for six to eight weeks after initial exposure. CDC guidelines require two positive bands out of three (23-25, 39, 41). IGeneX labs adds three extra bands (31, 38, 83-93), the first two of which were removed from the CDC criteria during the development of an unsuccessful vaccine and were never replaced in the original testing.
The IgG antibody is typically present a few months following initial infection. IgG antibodies are indicative of chronic Lyme disease. CDC guidelines require five positive bands out of 10 (18, 23-25, 28, 30, 39, 41, 45, 58, 66, 83-93). The IGeneX criteria is two bands out of six (18, 23-25, 28, 30, 39, 41, 45, 58, 66, 83-93). Band 41 is specific for the flagella (tail) of spirochetes (corkscrew bacteria), but is said to not be absolutely specific for Borrelia. It’s been stated that this particular spirochete may also be related to syphilis spirochetes or what are called dental spirochetes. Many people with Lyme that I have interviewed have all had band 41, sometimes in testing it was the first and only band. So the theory that it’s more common to have “dental spirochetes or syphilis spirochetes” more so than having Borrelia spirochetes seems to mystify me. I had band 41 and so did everyone in my family. None of us have syphilis or dental spirochetes.
Western blot bands
Some Lyme specialists and scientists believe that there are five very specific bands on the Western blot test that are highly indicative of Lyme disease, band numbers 23-25, 31, 34, 39 83 and 93.
If any of these bands are positive and the patient is experiencing symptoms of Lyme disease, they may feel treatment is warranted.
This test is generally considered the most reliable test currently available although it is estimated to be only 57% accurate according to IGeneX labs. Other Lyme literate physicians such as functional M.D., Dr. Todd Watts has stated it to be 70% inaccurate in his practice.
Many allopathic doctors will not consider using the western blot unless the ELISA is positive, thus missing an important diagnostic tool.
The western blot is only focused toward the diagnosis of Borrelia burgdorferi, the primary bacteria associated w/ Lyme, & not other species of Borrelia that may cause Lyme disease or other problematic co-infections like Bartonella, Babesia, Mycoplasma, & more.
Lyme disease Stigma
Its almost like a rite of passage at this point.
We all end up having a run in with doctors and/or pediatricians, people you know, family, or friends at one point. With Lyme Disease it’s not long before you’ll see exactly why people with this illness are so passionate and determined. We have had to fight for everything, especially our dignity, honor & integrity.
Through the process we have become so self sustaining, that many of us know more than our primary care physicians and the established healthcare system when it comes to this particular illness. Lyme is heavily ignored, mocked and stigmatized. It’s truly a crime of humanity.
After our mold toxicity diagnosis, we soon found that a big portion of people who have mold toxicity/CIRS are also usually Lyme positive. We lost our house & everything we owned from the mold, and like most families who would experience such a tragedy, couldn’t afford the out of pocket testing for each of our 2 younger kids, my husband and myself. (IGeneX, Armin Labs & DNA Connextions run in the hundreds to thousands for testing, so when you have multiple people- it can get astronomical)
I made a list of labs I wanted (to interpret myself) and had Peter (my husband) ask our primary care provider (family doc) to have them done through LabCorp. Instantly our doctor became offended & just “knew” Peter didn’t have Lyme. He started a barrage of accusational questions, as he hemmed & hawed over Peter’s determination.
Shocked at his obvious depth of knowledge in the subject, that trumped his own, he refused. Peter is not one to back down and tried to negotiate. While looking at my list of lab codes, the doctor finally said he would do a western blot based on his symptoms but reiterated that, “he knew it would be negative.”
It was somewhat of a glorious moment when the testing came back CDC positive. His doctor was shocked, mystified and still treated the situation like we somehow cheated the system. He was angry after learning Peter went to a LLMD (Lyme literate medical doctor) and had such a temper tantrum over it he stormed out of the treatment room when Peter went for a follow up. He treated my husband with such condescension that would later result in us leaving the practice all together. We have yet to find a replacement PCP that doesn’t mirror the same disdain for Chronic Lyme Disease, the sufferers of Lyme & a righteous amount of cognitive dissonance.
While most practitioners may have had 8 hours or less- total, of training for Lyme Disease- 15-20+ years ago, we have been studying the latest methods, procedures, protocols, discoveries and treatments, for sometimes 8 or more hours per day.
And no, we don’t get all our information from Facebook posts and mommy blogs while we roll around on the floor in essential oils. LOL. (I get a bit sassy when I am forced to defend my own illnesses, my intellect, education & character that is constantly challenged & judged by the general public, the media, and the medical establishment. (But seriously where do people come up with this stuff?)
Anyone with Lyme knows exactly what I am talking about, and lives with it. That however, seems to be questionable too, as we supposedly aren’t aware or capable of our own bodies either, according to most. Insert sarcasm here.
Lyme disease Divided
As you have read, and maybe experienced yourself, there is a huge divide among our medical system. Many practitioners are either uneducated or biased and egotistical. There are two opposite sides to Chronic Lyme. One that supports Chronic Lyme and one that does not. The sooner you are able to articulate between the two, the less pain and suffering you will experience.
US
The truth seekers, believers, the sufferers, victims, warriors and people who know without a doubt that Chronic Lyme exists. These people have spent years researching, learning, advocating; and treat Lyme Disease as a worldwide, debilitating & serious chronic illness with numerous symptoms, mirroring numerous illnesses.
Does not require a positive blood test for diagnosis, nor requires rash as a symptom.
Lyme is worldwide
Lyme is an epidemic
Cannot accept insurance since there is no ICD-10 Coding for Chronic Lyme Disease (Must pay OOP-out of pocket)
Agrees Lyme is congenital, and passed via breast milk.
Some agree it is additionally an STD, but not all, many doctors are going by what they are seeing in their patients, families and couples which present highly in favor of it being an sexually transmitted disease.
A large portion believe it’s additionally passed by mosquitoes, fleas, spiders, and biting flies.
Agrees that Mold is a trigger for Lyme, but not all know how to treat.
Differing in treatment, some do antibiotics, some do herbal & homeopathic, some do both.
(Does not agree with the CDC) A group of patients’, children, parents & caregivers, LLMD’s-(Lyme Literate Medical Doctor), Functional medicine practitioners, Integrative practitioners, naturopaths, environmental health coaches, functional nutritionists, herbalists.
Groups that support this view: GLA-(Global Lyme Alliance), ILADS-(International Lyme and Associated Disease Society)
THEM
The people that think Lyme doesn’t exist as a chronic illness, is nothing to be concerned about, & has a variety of symptoms like fever, rash, facial paralysis, and arthritis.
They believe it is an acute illness, “easy to diagnose and treat”.
Most doctors believe you must have a bull’s-eye rash present to be positive.
Must have positive ELISA & Required Bands on Western Blot.
It only exists in the northeastern states from Virginia to Maine, in California, Minnesota and Wisconsin ONLY.
Believes Lyme is only passed through ticks, not congenital or an STD.
Does not recommend skipping the first test (ELISA) and just doing the Western blot. Doing so will increase the frequency of false positive results and may lead to misdiagnosis and improper treatment.
Believes testing is highly accurate and is so sensitive it often comes back “false positive”
Believes “Chronic Lyme” is when people have another illness not related to Lyme, usually mental health issues.’
States only 30,000 people per year get Lyme.
Believes the Lone Star tick, American dog tick, the Brown dog tick and the Rocky Mountain Wood tick cannot be carriers of Lyme Disease.
States there is no proof of Lyme being transmitted via blood transfusion, and if you were infected, once you have done a course of 2 weeks of antibiotics, it’s OK to donate.
States prolonged antibiotics are no different than treating with a placebo.
Refers to Chronic Lyme in their own terms called: (PTLDS) or post Lyme disease syndrome (PLDS).
They will presume you’re psychosomatic, have mental health issues, making it up, diagnose you with Fibromyalgia or some other collective symptom diagnosis.
Believes patients are incapable of understanding their own bodies or symptoms and unable to do research, that you have no intelligence, will gaslight you and refuse to listen or think otherwise.
Lyme is curable
(Agrees with the CDC) Your family doctor, pediatrician, rheumatologists, ER docs & nurses, infectious disease doctors, big hospitals, & large groups, health insurance companies, med school students, interns, allopathic practitioners.
Groups that support this view: CDC, IDSA (Infectious Disease Society of America, ALDF-(American Lyme Disease Foundation)
Every doctor we went to, stated it was easy to diagnose, testing was accurate, treatment was simple and that not me, nor my husband or children had Lyme.
I was told that my own symptoms were “all in my head” and that I needed to see a psychologist. My testing was negative because I only had one band, 41. I was “making this up for attention”, my labs were “normal” and yet another told me I was trying to get narcotics, when I didn’t even ask or mention it!
At one major children’s hospital, the infectious disease doctor refused to look at my kids’ prior diagnosis’ of mold toxicity from another M.D. in Washington, DC and proceeded to mock us by saying mold was a quack illness. His nurse held our positive labs (which were so many, each child had a 3 ring binder) the entire time while he didn’t bother to even look. They included pages & pages of inflammatory markers, low CD57, EBV, High C4A, susceptible biomarker HLA-DR genetic tests, positive Rocky Mountain Spotted Fever and multiple positive western blot IgG & IgM bands.
He did a scoliosis back exam, looked in their ears and eyes, had them push up with their hands & legs with his hands pushed them down and remarked that they were both “psychosomatic”. I hopped up instantly and said, “C’mon kids” and calmly grabbed our lab binders from the startled nurse and immediately said, “Thank you for your time, but I don’t agree with your assumption, I know exactly what you support here, which it hurts to know, is not children with Lyme Disease. I may not know much according to you, but I do know you’re absolutely wrong”, and walked out.
I often think about how many kids are misdiagnosed with ADHD, Allergies, OCD, Gut issues, Eczema, Obesity, Depression, Mental health issues, etc. Those are all just names that match a grouping of symptoms. None of them are the root cause of the illness. Many people and children are being put on medications that only suppress their symptoms, and conclusively we are stuck using a system of medicine that no longer serves chronic illnesses of today. The pill for every ill is not healing anyone.
These symptoms that clearly are Lyme Disease or related to the environment continue to be denied in ignorance, which creates this huge divisional problem we have. I get teary-eyed thinking to myself that there is a child out there, who is alone right now, his/her parents perhaps don’t believe them, not on purpose, they think they are doing the right thing since doctors say they are “psychosomatic”- when that is so far from the truth.
I am fighting for you sweet child, and you too Mom and Dad, you are not alone.
We are growing, and uniting for all of us.
we are in the midst of great change within the field of health care.
“these systems are not equipped to address root causes, handle chronic illness, nor see people through to disease resolution & longevity. In fact, they were never designed to do so.”
-Carla Atherton, MA, Director, Family Health Coach, Healthy Family Formula
Lyme disease symptoms
There are many symptoms of Lyme, hence the “great imitator” tagline. Some are ones that you may not even notice or take serious. This is another belief that has slowly rooted throughout society. We have come to accept certain symptoms as “normal” and lost the ability to recognize when some things are wrong.
Lyme is rumored most notorious for its “bulls-eye rash”, which even a majority of physicians unknowingly hold regarded as the “one and only sign” of true Lyme transmission. I want to be clear, this is false.
Less than 50% of people get the classic EM (erythema migrans) rash.
In my personal experience, myself, my husband and 3 of my children all have Lyme, and none of us had a rash. I have hundreds of Lyme Disease warriors and friends through the power of technology and 98% didn’t see a rash either, so take that for what it’s worth, when you need to make a judgment call.
Early signs of Lyme are like flu symptoms, you feel tired, better yet, fatigued. Netflix and PJ’s are your top priorities. You may have a sore or stiff neck, muscle aches, fever, anxiety, irritability or paranoia, sore throat or what feels like a sinus infection that won’t go away. Some people have headaches, numbness, facial palsy (weakness in the face), seizures, or a rash that’s so pale or oddly positioned that it’s barely noticeable. If you get a rash, it’s just as likely to look like a simple rash that is easily mistaken for a skin infection or spider bite.
It doesn’t have to “look” like a bulls-eye.
An important factor to understand, with Lyme disease your symptoms aren’t raging 24/7. It fluctuates in time & severity. This is another reason why people imply we don’t look sick.
For me, I fought illness with excuses at first. I spent a long time thinking what I experienced was normal aging (I am not that old mind you) or I made excuses like I was working too much, stressed out or my bed was worn out. My hands were the first to hurt, aching at work, and I thought it was carpal tunnel honestly. Then came the “fibromyalgia” diagnosis. Was it Lyme or the mold that triggered my downfall in health? We will never know, and I am good with that for now.
Symptoms can also disappear for years and then reappear when it’s optimal for the pathogen to fire up again. I am a prime example having contracted Lyme when I was a child, then it went into hiding until I got exposed to mold, years and years later.
Lyme Symptoms in young children
If your child is ill, see your pediatrician. If they won’t treat or you know there will be push back, move on. Signs of illness or infection in kids include:
being tired often or getting tired easily
being listless or less active than usual
complaining of aches or pains including headaches, stomach aches
glassy eyes, circles under the eyes, paleness, loss of appetite, loss of interest in activities
dizziness, fever, mood changes, and irritability.
What’s BIOINDIVIDUALITY?
Every single person is bio-individually different, meaning we all have differing variable factors. We have different genes & epigenetics, different diet and nutrition, different exposures throughout life (GMO’s, pesticides, heavy metals, viruses, pathogens, chemicals, electro-smog, EMF’s, vaccines, pharmaceuticals, pollution, toxins passed in utero, etc.) and therefore differing levels of toxicity. (Everyone, even infants have some degree of toxicity in the world we live in today.) We all have different allergies, as well as our microbiomes contain completely different strains of bacteria-both good and bad.
Our lifestyles are all complexly differing as well. I know for me, I have experienced a lot of deep trauma early in my life, whereas you may have grown up without ever getting exposed to such dark emotions. This equivocally plays a role in our immunity, our body burden and the way our body will heal in the future.
Each of our immune systems react individually different. Because of this concept it’s been much easier for us to understand why chronic illness presents so diversely, and equally why there is no one cure or answer in treating chronic illness. What may be harmless to me, may take down my husband.
Microbiomes
I mentioned our microbiomes earlier, which the body actually has many. Most notable being your gut, but equally we have a skin microbiome, sinus microbiome, vaginal microbiome, eye microbiome, colon microbiome, etc. All of us have tiny microbes working within and on us, since the moment we were born.
The first microbes babies get, if delivered vaginally are a film of microbes as they pass through the birth canal. This is a critical part of our early life of which I was unaware when I had my kids. This would have changed my opinion of the 2 c-sections I had, and I would have fought harder to have a VBAC (vaginal birth after Cesarean), about which I was told was impossible at my hospital.
It’s essential to understand that microbes/bacteria get a bad rap. There are good bacteria and bad bacteria. Much of my own life I spent thinking all bacteria was bad, and that it was healthy to constantly be dousing myself with anti-bacterial soaps, wipes and sprays. To me, bacteria was synonymous with sickness or infection, and I went to great lengths to keep my home and body practically surgically sterile. This has now been to my own detriment.
We are bacteria, more so than we are human in a sense. The body is so sophisticated, and contains thousands of differing ecology with 3.5 million microbial genes inside of us. The human body is coded with 90% of bacterial DNA. This means that only 10% of our own DNA is actually driving the ship. When you break this down, it helps to understand the design of our bodies, and how it all symbiotically plays a part.
Lyme disease Co-Infections
Without adding more complexity, it’s essential to understand ticks and bugs carry much more than just “Lyme”. What’s referred to as co-infections, are additional pathogens, viruses or bacteria that get passed via bite or that can be passed congenitally from mother to child in utero. Some of us may already have existing co-infections present in our bodies and never knew. This would be a reason why I would encourage & invest in testing. You may hit a plateau in treatment. Some of these include:
Bartonella
Babesia
Mycoplasma
Ehrlichia
Rickettsia
Rocky Mountain Spotted Fever
Tularemia
Powassan Disease
STARI
Anaplasmosis
Heartland Virus
Brucella
Not to mention there are over 20 different known species of Borrelia worldwide and an unaccounted number of different strains of each species. This is just what we know, I am sure the real numbers are astounding at this point.
The symptoms that present will also take into consideration the amount of time you have been sick (particularly prior to diagnosis), and the immune-response of the individual. It is therefore difficult to look at patterns, particularly in teenagers, when hormonal factors can also influence symptoms.
Presentations in children with lyme
1. Many with Lyme disease do not look sick, particularly those for whom the neuropsychiatric symptoms are the primary indications.
2. Fluctuations in moods may occur, such as irritability, hostility, extreme sensitivity, anxiety, panic attacks, and even combativeness and opposition. Female adolescents often have extreme PMS symptoms.
3. Fatigue and depression are very common and stem from the illness itself, as well as the situation of the patient.
4. Cognitive problems, such as problems with attention, concentration, executive functioning (planning, organization, prioritizing and multitasking, concentration, and working memory), short-term memory, and word retrieval can occur with people who have been diagnosed with Lyme.
5. Eating disorder symptoms, though not common, can be seen in both male and female adolescents, as well as in adults, with Lyme disease.
6. Sound and light sensitivity can impact a student’s ability to tolerate the noise and fluorescent lighting of most school settings.
7. Abilities to perform well and consistently, in the academic, athletic, and social arenas can be seriously impacted, and the student with Lyme disease often loses confidence in him/herself. Sound and light sensitivity can impede a student’s involvement in social activities (sporting events, school dances, etc.)
8. The effect of Lyme disease on the brain and body can even impact a gifted athlete’s ability to perform:
Spatial perception may suffer; thus an athlete may lose the ability to judge distances.
He/she may lose the ability to recall and execute plays, as well as understand and follow directions.
Reduced speed of processing can inhibit the ability of an athlete to compete at his/her pre-Lyme disease potential.
Extreme sensitivity to light and sound might impact performance (even watching an athletic event can be difficult for a student who has late-stage Lyme disease).
Physical symptoms that impact performance include: intermittent fatigue, muscle and joint pain, dizziness, loss of balance, strength, coordination, and flexibility; even asthmatic symptoms may be worsened by Lyme disease.
“Lyme disease has become, after AIDS, probably the fastest spreading infectious disease.”
Dr. Dietrich Klinghardt, PHD., MD
9. Part of the pattern of this illness is that symptoms may come and go, or become more or less severe, from day to day, both due to the illness itself, and to the response to treatment. Because of this, Lyme disease patients often are met with doubt from those around them who have difficulty accepting that they are suffering from a serious, debilitating illness. Lyme disease is often an invisible disease because the patient may not always appear to be ill.
10. Students who are ill with Lyme disease may respond in different ways, partially due to their gender. Female students may be more likely to display emotion, some having tearful “meltdowns” when they feel overwhelmed. Male students are more likely to withdraw—exhibiting the bravado common to adolescent males, perhaps denying the illness—and appear angry and belligerent. Adolescence, a time of change and pressure on several fronts, is far more difficult for students struggling with Lyme disease.
11. Some students with Lyme disease are truly isolated, missing school for long periods of time, not being able to predict when they will be well enough to return to school and remain there.
12. Non-acceptance by peers and the isolation that comes from long periods of time out of school can lead to feelings of alienation and loneliness. This can result in a tendency to further withdraw and isolate. Some feel embarrassed about an illness they cannot control.
13. Returning to school after absences may be a problem, as the student struggles to catch up, and returning to the social arena can be particularly difficult.
Educational Signs of Lyme disease
1. Loss of school time:
Too sick to attend school at all
Too sick to attend full day
Frequent absences
Late mornings/start of school
2. Interrupted school day:
Falling asleep in class
Frequent visits to nurse
3. Cognitive impairments (often dramatic):
Word-finding deficits
Impaired memory, short- and long-term
Forgetfulness
Reduced processing speed
Impaired auditory and visual processing
Impaired visuospatial ability
Inability to multitask
Impaired attention and concentration (ADD-like symptoms)
Difficulty planning and organizing school work
Reduction in IQ, sometimes dramatic
Inconsistent performance across all aptitude, achievement and functional tests
Poor concentration
Very Distracted
Difficulty organizing schoolwork
4. Other impairments that impact learning:
“Brain fog,” described as the inability to think, remember or articulate clearly
Profound fatigue, as well as other physical symptoms (see symptoms)
Vision problems (floaters, blurred vision, etc.)
Sensitivity to light and sound
5. Academic performance in all areas, resulting in:
Low or inconsistent test scores
Poor or inconsistent class participation
Poor or incomplete homework assignments
6. Standardized tests:
A dramatic lowering of IQ can be seen on tests
Other standardized tests can give a false (negative) impression of the student’s potential (including college entrance exams)
For more information & resources for Teachers, Educators & Schools to teach students of all ages, visit the GLA here.
Lyme disease symptoms list
This is not a full list, there are many possible symptoms and many illnesses that mirror Lyme: Fibromyalgia, Parkinson’s, MS, Dementia, Alzheimer’s Disease, ALS, ADHD, Allergies, Autism, Rheumatoid Arthritis, Mold Toxicity & Autoimmune Disorders.
General Well-being: Chronic Infections, Chronic Flu Symptoms, Sleep disorders, Insomnia, Never get enough sleep, Extreme Fatigue, Extreme “Mono-Like”Exhaustion, Hair Loss, Swollen Glands, Sore throat, Weight Gain, Weight Loss, Irritable Bladder Dysfunction, Change in bowels, Upset Stomach, Constipation, Tingling, numbness, burning, or stabbing sensations, Light-headedness, poor balance, difficulty walking
Cognitive Symptoms: Difficulty with concentration, reading, spelling, Difficulty in multitasking, Math problems, Difficulty making decisions, Memory Loss, Disorientation: getting lost; going to wrong places, Stuttering, Speech Problems, Poor school or work performance, Attention deficit problems, Distractibility
Skin Problems: Erythema migrans (rash), Acne, Strange Rashes, Eczema
Ocular: Floaters, Double or Blurry vision, Vision changes, Excessive Sensitivity to Light
Auditory: Ears Ringing, Vertigo, Hearing Loss, Excessive sensitivity to sound
Musculoskeletal System: Joint pain, swelling, or stiffness, Migratory joint pains, Muscle pain or cramps, Body stiffness when waking
Neurological System: Burning/stabbing sensations in the body, Burning in feet, Spinal Pain, Neuropathic Pain, Numbness in body, Tingling, Pinpricks, Numbness in face,
Nervous System: Tremors, Dysautonomia,
Head, Face and Neck: Headache, Neck Stiffness, Facial paralysis (Bell’s palsy), Tingling of nose, cheek, or face, Twitching of facial/other muscles
Respiratory/Circulatory Systems: Heart palpitations, Heart block, murmur, Chest Pain, Irregular Heart Beat, Shortness of Breath
Psychiatric Symptoms: Mood swings, Anxiety, Personality changes, Feeling as though you are losing your mind, Depression, Hallucinations, Suicidal Thoughts-Ideations, OCD, Panic Attacks, Delirium, Autism-Like Syndrome, Mania, Delusions, Rage, Irritability, Agitation.
Lyme disease TREATMENT
Chronic Lyme is difficult to treat.
This is not only due to its stealthy constitution, but because Lyme is not the only thing 99.9% of people are dealing with. While Lyme Disease itself can cause debilitating symptoms and wreaks havoc drilling within the body, it needs to be understood why your body is reacting the way it is. Many people have Lyme and don’t know it, similarly it doesn’t cause any discomfort or reasons for them to be concerned.
I carried Lyme practically my entire life, but it wasn’t until I had my first flu shot & got exposed to mold that my body shut down and the Lyme took over. Meaning, it waits until the opportune time - when your total body burden is peaked and overflowing.
Much of what we have been taught & experienced with medicine and health is so departmentalized that we have to go back and relearn that the systems all synergistically work together, each part affecting the other, sometimes to our detriment.
When I spoke about bio-individuality earlier in this article, that plays heavily into understanding how Lyme & co-infections will act within your body. Your immune system’s strength, the amount of inflammation you have, your mitochondrial & cellular health, the autonomic nervous system, your detoxification pathways, gut microbiome, epigenetics, your environment, nutrient levels, etc. All of these things need to be evaluated before you can have success with treatment.
While western medicine has its place, and I appreciate the people who work hard within its practices, its concepts don’t apply when it comes to Lyme Disease, its co-infections and the new chronic illnesses of this decade. This is one reason why people do not have any progression treating the disease. We have been indoctrinated to believe that taking a pill to kill is the answer for most all of our illnesses & symptoms. While antibiotics, antifungals, & other pharmaceuticals have a role and are necessary for some people, the percentage of people that are in remission solely by taking them is very low to none.
Working with an experienced practitioner to peel back the layers of the onion, so to speak, is where I like to point people. The disease is complex, and if you are just stepping into this, there is no simple answer unless you are dealing with acute Lyme, for which I listed the most common protocols above.
Treatment for chronic Lyme varies, and many would argue that their way is the way. It’s a personal decision, and one that as a health coach I empower my clients with concepts of health autonomy. Providing enough information so they can make the best decision for thereselves and their families. There is no cure for Lyme, only balancing the body back to its stasis of harmony.
BUILDING YOUR WELLNESS TEAM
Finding someone to help you do this will be a challenge, however it is possible. Due to the recency of Chronic Lyme & its environmental factors which have only surfaced in the past decade, and from the divide in medicine & beliefs as well as the lack of experience in this field, there is not going to be an overflowing selection in your home town. Chances are you will have to travel, or may even decide that treating remotely via skype is a better option for you.
The options that fit the best description for this will be a functional medicine practitioner, a naturopath or functional/environmental health coach. The doctors that treat Lyme are called LLMD or Lyme literate medical doctors. They do not take insurance as there are no ICD-10 health codes for chronic Lyme so treatment will be an out of pocket expense as I explained above.
UNDERSTANDING THE TOxic BODY BURDEN
As I spoke of earlier, most people have multiple sub-root issues which affect the total body burden and need to be carefully evaluated and treated as well, so choosing someone who understands that, and bridges that knowledge into protocols is important.
Healing is a lifestyle that took me a period of time to understand and accept. In our new toxic age, preventative measures, a comprehensive plan and modification of habits will be crucial for progress.
People who have Lyme often have been affected by the following issues:
Mold toxicity, CIRS and many other toxins present in buildings that have sick building syndrome (have been damaged by water through flooding, roof leaks, plumbing leaks, etc.)
Infections or viruses such as Epstein-Barr virus, Cytomegalovirus, HHV6, Retroviruses, Chlamydia Pneumonae, parasites, small intestinal bacterial overgrowth (SIBO), Candida
Asbestos, lead, fiberglass, and other toxic substances found in many buildings
Formaldehyde, flame retardants, and toxic chemicals often present in drywall, carpeting, flooring products, OSB board (used in construction), insulation, glues, sealants and other products used to build homes and offices. Many toxic chemicals also are found in mattresses, upholstered furniture, clothing and other products.
Glyphosate, pesticides, herbicides & chemicals used in fertilizers that also contain high amounts of heavy metals
Pesticides, hormones, mycotoxins, arsenic, and other irritants found in produce, grain, meat, fish and other foods
Phthalates and parabens found in cosmetics and personal care products
RF, EMF, and microwave radiation
Cyanobacteria and other biotoxins present in many lakes, rivers, ponds, and in soil
Amalgam dental fillings
Pharmaceutical drugs, vaccines, antacids & other prescriptions that contain: Aluminum, mercury, & other heavy metals
Industrial air pollution & vehicle exhaust
Cosmetics & beauty products that contain numerous heavy metals & toxic chemicals
Public water that contains lead, fluoride & other sediments, heavy metals & toxicity
Everything is connected. For example, a person like me who has CIRS and Lyme, I am now more sensitive to chemicals and EMF’s. I now have MCS (multiple chemical sensitivities) and EMF sensitivity. We have to use toxin-free everything because my body reacts to soaps, products, makeup, etc. I also can’t talk on my phone too long, my hands start to burn, and ache. Similarly a person with Lyme may not realize they react to mold and have become more sensitive to water damaged buildings and the toxins within them.
It is thought that many illnesses may be caused or exacerbated by a person’s exposure to Lyme & environmental toxins.
These include:
Alzheimer’s disease and dementia
Epilepsy and other seizure disorders
Dysautonomia such as postural orthostatic tachycardia syndrome (POTS)
Parkinson’s disease
Autism & Autistic spectrum disorders
Depression, anxiety and other mental illnesses
Autoimmune diseases
Cancer
Diabetes (Type 2) and metabolic syndrome
Obesity
Cardiovascular disease
Celiac disease, and other food sensitivities
Leaky gut syndrome (LGS) and dysbiosis
Asthma and allergies
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome)
Pneumonia and COPD (chronic obstructive pulmonary disease)
Psoriasis and eczema
Rheumatoid Arthritis
links
Global Lyme Alliance Resources
Dr. Jess Lyme Symptoms & Treatment
Dr. Dietrich Klinghardt Lyme Disease
Better Health Guy Lyme Disease
Extreme Health Radio Lyme Podcasts
UNDER OUR SKIN-Documentary on Lyme Must watch!
“Bitten”, the book by Kris Newby
Dr. Richard Horowitz’s Lyme Questionnaire
ILADS Videos from Dr. Charles Ray Jones, Dr. Joseph Burrascano & more
References: 2019, Global Lyme Alliance, Dr. Bill Rawls, Dr. Jay Davidson, Dr. Dietrich Klinghardt. Thank you for all you do!
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