By Cassie Johnston
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May is Lyme Disease Awareness Month, and over on Instagram, I’ve been sharing some tidbits about Lyme disease that a lot of folks don’t know (I certainly didn’t before I came down with it). Lyme is a disease that most people have heard of but is incredibly misunderstood.
Being a Lyme Disease sufferer is exhausting because of the disease itself, but also because of the incredible amount of advocacy work you have to do for yourself and your disease. There are so many questions to answer and misconceptions to fight!
Since I was diagnosed six months ago, I’ve been collecting the most frequently asked questions I get and figured I’d pull them together into one post to finish up the month of May. Hopefully this post will help clear up some questions, and if you would like to know more, I highly recommend checking out the documentary Under Our Skin and the sequel, Under Our Skin 2, to get a good overview of why Lyme is so controversial and what it’s like to live with it and treat it.
This is probably the first thing you should know about Lyme Disease. Everything (yes EVERYTHING) about it is controversial. I’ve had multiple health care professionals say to me that Lyme is *the* most hotly debated topic in the medical community right now. We’ll cover some of why it’s so controversial later in this post, but what you need to know is this: all this controversy hurts exactly one group of people—the patients. It makes navigating the entire process—from getting diagnosed to affording treatment—100x harder for sick people. Which is just…wrong.
This is maybe the most important piece of information I can give you, and something I wish I knew before I got sick: there is NO reliable blood test for Lyme Disease. A negative Lyme Disease test does not mean you don’t have Lyme Disease. I should know– I had two negatives before I was diagnosed.
If you walk into your family doctor and ask for a Lyme test, they’ll probably give you the standard test that misses roughly 55% of cases of Lyme. And worst of all, many health care professionals don’t know that it is this inaccurate. There are more sensitive tests out there that are more accurate, but they aren’t perfect and are extremely expensive (and rarely covered by insurance).
Lyme, at its heart, is an immune-suppressor. The Lyme blood tests are testing for Lyme antibodies in your system. If Lyme is suppressing your immune system enough that you aren’t producing the antibodies—guess what? You get a negative test. Many people don’t test positive for Lyme until *after* they’ve started treatment.
This is why the vast majority of Lyme doctors consider Lyme disease to be a clinical diagnosis—based off of symptoms and history—and not a laboratory diagnosis based off test results.
If you find a tick that has bitten you, SAVE IT. If you start to show any symptoms, you can then mail a tick into a reputable lab for testing (I like to use this non-profit service from the University of Massachusetts). It’s much easier, faster, more reliable, and more affordable to test a tick as opposed to testing a human.
Just this past week, we mailed in a tick that we found under Juni’s earlobe. The bite was looking a little bit off, and I figured $50 to get the tick tested was worth it not to worry. The report was texted to me two days later and it was all negative.
Now I just know it looks nasty because she’s a three-year-old who won’t stop scratching it! Not because she possibly has Lyme or other tick-borne infections. Best $50 I ever spent. Way better than the almost $1000 I spent on getting my (less accurate) Lyme testing done last fall.
I’m in the minority on this one—I have a very clear history of tick bites yearly since I was a kid, but the vast majority of people who have been diagnosed with Lyme do not remember ever getting bitten by one.
Ticks can be smaller than a poppyseed and can carry Lyme (and other tickborne diseases) at every stage of their development—meaning even baby tick bites are bad news. Tick saliva also contains a numbing agent that makes tick bites painless. Ticks naturally fall off when they’ve gotten their “fill” and some folks don’t react to the bite at all—no itching or redness. You may never know you were bitten.
When you ask someone on the street what the symptoms of Lyme Disease are, most people will say “bullseye rash.” This distinctive rash is a well-known symptom of Lyme. Unfortunately, most people think that if you don’t have this special rash, you can’t have Lyme—this just isn’t true.⠀
The majority of people with Lyme *do not* have this rash. If you are “lucky” enough to get this rash, you can immediately get treatment—because it is very distinctive and very indicative of Lyme. But no rash does not equal no Lyme.⠀
The general consensus used to be that Lyme was a rare and isolated disease. The CDC’s estimate of annual Lyme cases per year up until 2013 was 30,000. Then in 2013, they basically said, “JK” and updated their estimate to 300,000 NEW CASES per year! And many Lyme disease advocates, researchers, and doctors consider even this number to be too low.
Just for reference: there are about 265,000 new cases of breast cancer and 40,000 new cases of AIDS in the US each year.
If I had a dollar for everytime someone said to me, “Well, my cousin/sister/teacher/friend had Lyme disease and was better in two weeks, why aren’t you?” I’d be a rich lady.
Lyme disease manifests itself differently in every body. How Lyme affects someone depends hugely on the “terrain” of the body it infects, the amount of time that passes before you start treatment, and a thousand other variables. Lyme disease looks different for every patient.
For some people, Lyme disease is little more than feeling like you have a mild flu for a few weeks while you take a bottle of antibiotics. For others, Lyme disease is a decades-long struggle with debilitating symptoms. This is what makes Lyme so hard to diagnose and so hard to treat—there isn’t a one-size-fits-all presentation or treatment.
The antibiotics versus non-antibiotics treatment plan is one of the most controversial parts of Lyme. Antibiotics are a solid treatment option when you catch Lyme disease early. Beyond that, the efficacy is less clear. It’s important to note that once you get into late-stage Lyme, the antibiotic treatments are nothing to be messed around with. This isn’t a bottle of pills you take for a week to get rid of a sinus infection.
Antibiotic treatment for late-stage Lyme is often done intravenously through a chest port for months at a time. There are very real physical consequences to that kind of aggressive antibiotic treatment, and unfortunately, not everyone’s Lyme infection responds (although some people do and recover).
Why don’t antibiotics always work? Well, one theory is that the “terrain” of the body is in bad shape and Lyme is opportunistic. And until you fix the terrain, no matter what you do to kill the bacteria, the treatment won’t “stick.”
The best metaphor I heard for this is the idea of an overflowing bathtub with the faucet still on. In some people’s bodies, antibiotic-first treatment can be like trying to clean up the spilling water without turning off the faucet first. This is why A LOT of people (me included) turn to herbal and other natural medicine treatments to support the body first, and then take (herbal or pharmaceutical) antibiotics to kill the bacteria only after that step is done.
I drive five hours round trip to see my Lyme doctor, and I’m one of the lucky ones. Even though more people are diagnosed with Lyme each year in this country than breast cancer, finding doctors who specialize in Lyme (AKA: Lyme-Literate Medical Doctors or LLMDs) are very hard to find. And because there are so few LLMDs out there, getting into one—let alone a good one—can take months or even years!
When I called to get an appointment for the premiere Lyme doc in our state, the receptionist told me that I should call back again in four months just to find out when I can call back again to find out when they were taking new patients. I asked her to ballpark it for me, and she said 6-8 months. I ended up getting squeezed in at another Lyme doc who I’m super happy with. But even with him, it still takes about three months to get appointments, even for an established patient.
I was diagnosed with gastroenteritis, an allergic reaction to NyQuil, seasonal allergies, adrenal fatigue, thyroiditis, Graves Disease, Parvovirus B19, West Nile, asthma, and sleep apnea. I was also told that by one amazing doctor that my panic attacks were because “life is hard sometimes.”
Since Lyme affects every symptom in the body and presents itself differently in every patient, it is almost ALWAYS misdiagnosed at first. Which is frustrating, scary, and obviously not ideal, because the treatments that work for, say, Graves Disease, are not going to necessarily help you recover from Lyme.
Alright, who is ready for some good old-fashioned Lyme disease controversy here? So the Infectious Disease Society of America (IDSA)—the group of infectious disease doctors in the U.S. that sets treatment policies and protocols for Lyme disease—has a limited view as to what treatments can and should be used for Lyme disease. Basically, they say that a 2-4 week round of one antibiotic will nix Lyme every time. For some patients, this is true. For others, it isn’t.
Lyme doctors across the country had noticed that some of their patients weren’t getting better using the IDSA guidelines and started trying to figure out how to make their patients better using different testing facilities and more aggressive and different treatments.
Which was all well and good, until the health insurance companies got wind of this and started going after Lyme doctors who went beyond the IDSA guidelines by claiming they were prescribing “unnecessary medical care” because they didn’t meet the guidelines. At the best, this meant that patients couldn’t get their treatments covered by insurance, and at the worst, it meant that doctors were taken to medical review boards by the health insurance companies.
The backlash of this was two-fold: (a) many of the best Lyme doctors have completely stopped accepting health insurance and (b) the ones who still accept insurance are very cautious with their treatment protocols and almost impossible to find. This leaves patients with a choice. Either sink thousands of dollars into treatment with a doctor who will probably be able to give you the care you need. Or get (probable) sub-par treatment that is covered by your insurance company. Neither is an okay option.
Coinfections to Lyme disease are the rule, not the exception. Most infected ticks also carry other common coinfections like Bartonella, Babesia, Rocky Mountain Spotted Fever, and about a dozen others. And just like with Lyme, the testing for these other infections is unreliable and expensive—which means it can be incredibly hard to nail down an exact cocktail of bacteria that are invading your body. Which obviously makes figuring out what treatment is appropriate just as tricky.
I could make this post 100 items long, but these are the big things I want people to know about this disease. As always, when I speak about my personal journey with Lyme, please try to remember that I am under the care of a small army of very qualified health care professionals who have my best interest at heart. I know you want to help, and gosh, do I ever appreciate that sentiment, but please try to refrain from offering me medical advice over the internet. For my mental health, I am choosing to believe that my care is in good hands—and I appreciate your support in that! ?
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I just learned 10 things I never knew. I’m like….wow…oh….geez….ewwww…..that’s messed up….good to know…..how frustrating……ticks are creepy. Then…..I scroll past a picture with limes and it makes me giggle. Thanks!
My dad woke up one day with pink right leg. He thought it could be some allergy, but there was no rash. As time passed by his leg turned red and almost purple. He went to a doctor that did many tests to check if it is not a blood clot or something similar. He gopt ultrasound on his leg to check his vines – everything was good. All blood tests were fine, noone knew what was wrong. Then my dad suggested his doctor that maybe he should test for Lyme, because he was bitten by ticks many times. And that was an answer to his problem – after long antibiotic treatment his leg went back to normal. He was treated by a doctor who is not only the best doctor in my country, she is also European consultant for Lyme disease. She had seen many cases of Lyme, but never a color changing limb (and she works for over 30 years).
So, as you said Cas, Lyme can be different in everyone and it should be always considered when source of an ilness is hard to find.
Congrats on providing wonderful, truthful info!!! I also suffer from Lyme disease, I have been off work, as a RN, for 2 years. I did have a Positive test, the first time around but that was still 7-8 weeks after the Bite. I now have Chronic Lyme! And Fibromyalagia.
It has amazed me, as a Health care worker, of 31 years that other Nurses, Doctors and other professionals have NO interest in learning about this Very Serious Disease.
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