I know it’s not May anymore, but that does not mean I stop advocating for Lyme and related conditions for the rest of the year. I was inspired by a friend, who has been ill for quite some time, to do some digging on the web and in myself about Lyme outside of treatment protocols and symptom lists.
My dad has found a couple of ticks on himself in the last couple months here in Georgia, as well as pulling a tick or two off of our dogs recently. I’ve previously met several people who either have Lyme themselves, or know someone with Lyme. And I’m always meeting people who’ve seen ticks on their kids, pets and selves in Georgia. And most recently, I had a friend, who lives in the same neighborhood (in Georgia) as I do, text me about a tick she’d found on her husband.
Ticks exist, everywhere!
Growing up in Minnesota, one of the most Lyme-endemic areas (or so they say), and now living in Georgia, a place that apparently Lyme (and co-infections) doesn’t exist; it’s become clear that people are ill-informed. Lyme is on the rise, and not just Lyme, but all of the co-infections, which include but are not limited to: Babesia, Bartonella, Erlichiosis, Colorado Tick Fever, Rocky Mountain Spotted Fever, Q Fever, Tularemia, Neuro-Lyme, Lyme induced Fever, and several more. (For more information on these co-infections, click here.)
We need to start talking. The information that is being shared is not accurate, and it’s not even current. The tests that are being used are not reliable in the slightest, and believe it or not were not actually made to be a diagnostic tool, but rather for research.
The current two-tiered Lyme testing that is recommended by the CDC is surprisingly not so helpful. The first test is called the ELISA test, and if that comes back positive, the Western Blot is used to verify the positive. These tests look for antibodies in the blood, and for them to even have a chance at helping you get answers, you have to make sure you’re being tested at just the right time in relation to contracting the infection, not too early and not too late.
For the CDC to recognize you as a Lyme patient, you must have 5 of the 10 bands on the Western Blot test show up; if you have less than 5, you are not considered a Lyme patient, and therefore insurance will not necessarily cover the necessary medications/treatments that are needed to treat the infection … which is absurd! And a lot of times, even if you don’t have Lyme Disease caused by the Borrelia bacteria, you could have one or more of the listed co-infections above, that don’t come up on these Lyme tests. (For a more comprehensive explanation as to what the Western Blot means and what CDC’s requirements are, read this blog by Life with a Twist of Lyme, it’s very well written and informative.)
I had experimental blood tests done, as well as the standard ELISA and Western Blot using the IGeneX guidelines instead of the CDC’s, and they came back partially inconclusive, but they were helpful. There were 3 bands that showed up that validated my symptoms, but didn’t necessarily tell us exactly what was causing my symptoms. My doctor knew how to read the tests, and he treated me with integrity and respect, because he knew I needed help.
Doctors who understand the Lyme infection know what to look for and know how to read the tests for clues. Doctors who understand Lyme, who believe chronic Lyme exists are called LLMDs and LLNPs – Lyme Literate Medical Doctors or Lyme Literate Naturopaths.
The naturopathic doctor that did the experimental tests referred me to an LLMD who was more qualified to deal with the extensive list of issues regarding Lyme. In short, I was diagnosed with Lyme primarily by a conversation and health history*. We talked over treatment protocols and figured out what would be a good thing to start with and then move forward from there. I started treating Lyme with a list of supplements, a few herbal antimicrobial, and an antibiotic or two. Noticing a change in symptoms was slow and tedious, and I then started experiencing Herx reactions (getting worse before you get better). Time had gone by, medications had been added, discarded with, and switched, and improvement was still slow and nearly unnoticeable.
We moved to Georgia 4 months after starting treatment. I stuck with my LLMD in Minnesota for 2 more months, doing phone consultations and communicating online. I then transferred to a doctor here in Georgia, who spent 4 hours with us at our first appointment. We were blown away by her thoroughness and specificity. I was overwhelmed and quite sick, and for a second time, we talked over possible treatment plans, and decided on the path that my Georgian LLMD recommended, if I wanted to go to college fall of 2017. I started treatment with a long list of supplements and a few antibiotics. Moving to Georgia was a horrifying thought at first, and for the first 4 months, I truly hated it. But, pretty soon, I learned what a blessing it was. I’d found this wonderful LLMD who had the best protocol for me, I’ve met some beautiful souls, and most of all I’m learning to advocate for myself and others about Lyme, not just in Minnesota, but everywhere.
My point to this is that Lyme (and co-infections) exists everywhere, and so do ticks and mosquitos and flies. Finding an LLMD in Georgia didn’t seem possible when we first moved, because of two scenarios: 1) We met people who knew someone with Lyme and were being treated out-of-state, or 2) We met people who didn’t know what Chronic Lyme Disease (or Lyme in general) was, and therefore didn’t believe it existed in the South. But now that I’ve had some great strides forward with my Georgian LLMD, I see that there’s hope, for anyone, you just have to keep fighting. (Nothing against my MN LLMD, every Lyme patient is different, and not every LLMD has the right/best treatment protocol for them.)
Lyme exists, everywhere. If you don’t believe it can be contracted somewhere, think about this: People move, across state borders and to different countries; just because someone wasn’t bitten by a tick in the last two weeks, or doesn’t live in an endemic area does not mean they don’t have Lyme disease. Lyme Disease, if not treated at the first sign of an infection goes from an acute infection to a chronic one, hence the name Chronic
Lyme Disease, or sometimes appropriately called Persistent Lyme Disease. I never saw a rash, nor do I remember finding a tick on myself, but I have Chronic Lyme Disease. My first Lyme doctor traced my infection back at least 6 years, and my current Lyme doctor verified that, and pushed that number up to 11+ years – I grew up playing soccer in Minnesota, having injury after injury while my teammates were perfectly healthy, going for hikes in the woods, four wheeling in the woods of Wisconsin, playing in the grass with friends – everything lines up.
Lyme disease and related infections exist everywhere. Healing is possible, you just have to give yourself some credit.
People everywhere are sick, and they don’t have a clue what’s wrong, or where to start. Being chronically ill is overwhelming and exhausting, and to be told that what you might have doesn’t exist is devastating. I beg of you, please, don’t ever discredit someone’s condition. We are all fighters, and we need to learn to live and serve for the good of others. That starts with providing support and encouragement to those who feel defeated. Life is bigger than ourselves.
Lyme is known as the great imitator. The infections mimic other conditions and diseases, causing you to believe that you have a different issue, making your take medications that may actually be doing more harm than good. Lyme does some of its best imitation work on autoimmune conditions. Many people who were diagnosed with some sort of autoimmune condition years ago, are now learning that they have Lyme disease, and as they treat the chronic Lyme and co-infections, their autoimmune symptoms and reactions are calming down. I’m not saying that everyone with autoimmunity has Lyme; what I am saying is that there is a cause for everything, something had to attack your body and make your immune system fight harder than necessary, killing good cells, making your body have an autoimmune reaction, and many times, that attack is Lyme or co-infection.
I don’t mean to scare anyone, just inform you.
I encourage you to continue your outdoor endeavors, just remember to check for ticks, don’t forget behind the ears, scalp and between the toes. You can also purchase permethrin and treat your socks, shoes, hats, pants and/or shirts. Permethrin treatments last up to 6 washes.
You can also use essential oils to repel ticks.
- Rose Geranium
How to use: Mix a 5-7 drops of 2 or 3 oils with 4 oz of fractionated coconut oil (or similar carrier oil) in a roller ball; or filtered water, apple cider vinegar or witch hazel in a spray bottle. You can apply this mixture to your ankles, backs of knees, hip creases, waist, armpits, behind the ears and nape of neck. You can also apply the spray bottle version of this to your dogs – behind ears, around collar, under tail, and armpits. Avoid applying essential oils to clothing, as the oils can stain and ruin clothes.
I don’t recommend DEET, as it’s a very harsh chemical that is destructive to our bodies and the environment. Here are some bug sprays that work and are relatively natural and DEET free: REPEL (uses Oil of Lemon Eucalyptus, which works very well and many people find it works just as well as DEET without the serious health risks), and All Terrain Herbal Armor (uses other essential oils, which are highly effective when repelling ticks, mosquitos and other bugs).
We need to start talking, and sharing information that is accurate, reliable and up-to-date.
“She is tossed by the waves, but does not sink.”
*1+ hours spent with a Lyme literate doctor, taking notes on everything and anything. My parents were a huge help, as my brain fog and lack of cognitive ability were quite severe.
– I am not being paid for recommending any of the above products, and I do not make any commission off of the above links. I’m simply advocating, educating and looking out for all of you.
– Figure 1: https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/
– Figure 2: https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/