Full Disclosure: I am not a doctor or scientist. I do not know everything there is to know about Lyme disease. These comments are based on my experience and are not to be taken as an endorsement of any one protocol or physician. They’re questions I’ve been asked many times by curious, even hurting people. Lyme friends, if you read any of this and think, “That’s incorrect!” please reach out to me!
What is Lyme disease?
Lyme disease is a bacterial infection transferred through deer ticks (and possibly other insects such as mosquitoes). The bacteria, Borrelia burgdorferi, is spiral-shaped (called a spirochete) and enters the bloodstream when a carrying deer tick attaches to human flesh and goes undetected. Lyme disease-carrying ticks mostly live on the East Coast, but have been found across the U.S. and the world.
How and when did you get Lyme disease?
I don’t know! Much of my story is speculation because we never detected a deer tick or other obvious bite, nor did I have a bulls-eye rash or high fever (the classic Lyme symptoms). I’d been vacationing in Door County, WI every summer since I was a baby, a region known for deer ticks. My theory is that I was infected at some point while tromping around the woods behind Grandma’s cabin in flip-flops. It’s possible I even got sick, but no one knew to connect it to Lyme disease.
Because Lyme went undetected, it made its home in my bloodstream. (If treated immediately by your doctor with antibiotics, Lyme can be eradicated.) I think my immune system was initially strong enough to co-exist with the Lyme, holding its ill effects at bay. However, in 2009 during college, I injured my right knee while running and went under anesthesia in surgery; after this, my symptoms started. My theory is that the Lyme bacteria seized its opportunity for dominance when injury/surgery weakened my immune system.
What were your symptoms?
My symptoms included joint and muscular weakness, migratory (moving) nerve pains and aches, hot/cold sensations, lack of blood flow (my lips would turn purple!), chronic fatigue, mental fog, light/sound sensitivity, and ringing in the ears.
But everyone’s symptoms can be different, which is why Lyme is so difficult to diagnose. It’s called “The Great Imitator” because its symptoms imitate those of other auto-immune conditions like chronic fatigue syndrome, thyroid diseases, fibromyalgia, arthritis, etc.
How did you get diagnosed with Lyme?
From post-surgery to my diagnosis in 2014, I met with eight specialists, including my internist, an endocrinologist (hormones), rheumatologist (musculoskeletal), chiropractor, physical therapist, and homeopath (whole body). After dozens of blood panels and tests, many of them declared me “healthy,” which was frustrating…because I clearly wasn’t! No one could explain why I felt so terrible all the time. Not one doctor mentioned Lyme.
In God’s kindness, my mom met a lady at a bridal shower whose daughter had been diagnosed with Lyme. They compared our symptoms, which were too close for comfort. My mom connected me with her daughter, and as we talked on the phone, the lightbulbs were going off: What if I have Lyme disease?! She sent me a list of Lyme-literate doctors in the region and encouraged me to call around for an appointment (most offices schedule about six months out).
Surprisingly, I got an appointment at a Wisconsin-based practice two weeks later, an unheard-of time frame (since then, I believe they’ve taken on more patients; I have no idea how long it takes to get a first appointment now). My husband and I spent four hours there during our first appointment, encouraged by their care. My doctor diagnosed me clinically on the spot, based on my symptoms, and asked for my permission to start treating me that day.
We couldn’t believe our ears. We agreed to this, thankfully, as the blood tests confirmed about two weeks later that the bacteria was active and most likely ravaging my immune system. (Both the IGeneX and CDC tests returned positive results; sometimes, only the IGeneX test will because it’s a more sensitive test. But a negative test doesn’t necessarily mean you don’t have Lyme, or that you shouldn’t pursue treatment. You can have a “negative” overall result while still having “indeterminate” strands of Lyme.)
Not only did my doctor test for Lyme bacteria, he ran blood panels for various immune system markers (such as TGF-beta and CD-57). All revealed that my immune system had been battered by Lyme and depleted so it basically wasn’t doing its job anymore.
What treatment plan did you use?
My doctor’s plan was two-fold:
- Kill the bacteria
- Strengthen the immune system
So he started me immediately on a combination approach to target these two goals: antibiotics (medicine, non-natural) to kill the bacteria, and homeopathy and supplements (natural) to strengthen the immune system.
Because the immune system gets used to antibiotics over time, we had to change the type every three months (plaquenil, biaxin, minocycline). After nine months of three antibiotics, I went off them completely, as my blood work revealed a stronger immune system and, therefore, a reduction in Lyme bacteria. We also wanted to give my body a break from the harshness of synthetic medicine (though my antibiotics were intentionally very low-dose; I’ve always been sensitive to them).
In addition, I had previously switched to the Paleo diet (per the homeopathic doctor I saw a year before), and I highly recommend it for anyone trying to aid in healing their gut/immune system. So many foods we eat these days irritate the gut, which is one of our most sensitive organs. And if foods seep through the gut lining and into the bloodstream, the immune system will react negatively against this. I say “aid in healing” because that’s exactly what this lifestyle does; it won’t necessarily heal on its own, but makes Lyme treatment more effective.
Does health care insurance cover Lyme treatment?
Though I can’t comment on other doctors and practices, our visits and most of the treatment have not been covered by health care insurance. An unfortunately reality of chronic Lyme disease is that many patients pay out-of-pocket because doctors and insurance companies don’t recognize it as a condition. A huge part of changing this reality will need to come from people raising awareness and advancement in research (see the last point).
Where are you at right now in the fight against Lyme?
By God’s provision, we have every reason to believe the Lyme bacteria is now inactive in my body. There are varying opinions about whether Lyme can be rid of completely, or if the strain stays dormant in the body (kind of like mono does) while the immune system learns to manage it. Doctors don’t really have a concrete answer to this question. I think it’s best to look at symptoms (“Are they gone/going away?”) and blood work (“Is the immune system improving?”) to determine how your body is handling Lyme.
Either way, we’re grateful that my immune system has regained strength, proven through blood tests, and my symptoms are gone, which makes us confident we’ve conquered it.
This took about two years, and I’m very aware that’s not a lot of time; it’s the rare case of early-enough detection and successful treatment, which many Lyme patients don’t experience. The road to recovery can be much, much longer.
How do I find a Lyme-literate doctor?
Send me a note, and I’ll do my best to direct you to helpful resources. Also check out the websites below for their suggestions.
Where can I learn more about Lyme disease and treatment?
Check out these websites for more information about Lyme disease:
How can we raise awareness about Lyme?
Most primary doctors don’t know much about Lyme disease (and unfortunately, many won’t recognize chronic Lyme as a condition), so raising awareness is vital! I’m still learning about this, so I don’t have many answers yet. But the above websites have some information about how Lyme patients and their friends/family can help raise government awareness in order to fund further research.
The best advice we were given was three-fold:
- Be your own advocate.
- Be informed.
- When in doubt, see a Lyme-literate doctor.
Some other ideas:
- Connect with Lyme-related Facebook Groups and Pages.
- Participate in May’s Lyme Disease Awareness Month on social media.
- Ask questions (even the ones that seem dumb…really, ask them!).
- Talk about Lyme! Without scaring people, we want them to know about this very prevalent, dangerous infection so they can take precautions against it.
Although I may not get back to you right away, send me an email if you have other questions about Lyme disease or my story!