This is my fourth installment on Lyme disease, as Lyme awareness month wraps up. (But I’m in no way finished talking about it.) If this is your first time stopping by, you may want to back up and start here. The connections I’ve made with fellow Lyme warriors have further illustrated the fact that everyone in the Lyme community has a long story to tell about their path to diagnosis. Each narrative is different, and yet achingly similar. Contrary to popular belief, most Lyme warriors have no idea when they were been bitten (which means we can’t answer the “when did the tick bite you?” question;) we don’t display a bulls-eye rash (only 20 % of people in the United States are lucky enough to display the rash), and – like myself – have experienced months, or even years, of seemingly unrelated symptoms before we find out that the underlying issue is Lyme disease.
When I received confirmation of my own Lyme diagnosis, I joined a club with over 300,000 “members” diagnosed with Lyme each year (a number that is estimated by the CDC.) ILADS (the International Lyme and Associated Diseases Society) suspects that it’s much higher, with cases being vastly under reported or as yet undiscovered, hovering around 440,000. Let that number sink in for a moment. I will wait.
300,00 new diagnoses. Every. Year. That is higher than the annual rate of breast cancer diagnoses, estimated at 250,00. It’s more than the number of new cases of melanoma, which is around 87,000. And the only diseases that seem to eclipse Lyme are heart attacks (660,000 per year!) and diabetes, with 1.2 million diagnosed every year. You get the point. You have a new diagnosis, and a lot of company.
When I finally had actual, “verified on paper” proof that I had Lyme disease I experienced profound relief, grateful for an explanation for years of symptoms that didn’t seem to connect. (And, if you’re like me, you didn’t want to keep telling people that there is something else wrong, because you sound like a broken record. Or a hypochondriac.) I kept threatening to steal my Aunt Katherine’s line for her tombstone, which was: “I TOLD you I was sick.” Recently a fellow lyme fighter, while waiting for test results, lamented that “If this ISN’T Lyme, I don’t know what I’m going to do.” It was Lyme, and it ended three years of myriad symptoms that no doctor could put together.
My initial consolation was short-lived, because I quickly learned that I was at the beginning of a marathon, instead of reaching the end of a diagnostic mystery. It’s a relief to be able to name the reason that you’ve had a strange collection of symptoms for so long….but because ticks infect you with multiple diseases, once you have a positive Lyme result, it’s time to start digging even more – because you have to discover what “gifts” the ticks left for you, and where they hid them. It’s like the worst scavenger hunt ever. And depending on how much time has elapsed from that tick bite, you will require different levels of care.
I recently spoke with a doctor who said that she diverges from much of the mainstream medical community because when she sees patients within her specialty area and notices a cluster of other symptoms, she directs them to get tested for Lyme. This is the exception – not the rule. And she is diagnosing at least one new case per week. (And she is neither a Lyme Literate Doctor or an Infectious Disease Specialist.)
Consider the following stories – from my real-life and my online Lyme communities: I know one brave soldier who suffered for two years with debilitating anxiety, insomnia, word recall issues, GERD, neck pain, hypoglycemia, and gout. Sensing something was wrong, he went to his doctor for every single symptom – which was not his typical response. Multiple times he brought up Lyme as a possibility and was summarily dismissed. Another lyme fighter in my circle had years of respiratory infections, bouts of bronchitis , migraines, strep throat, and repetitive sports injuries – all of which necessitated multiple doctor, specialists,and pt visits. None of which raised his Primary Care Doctor’s concern that it could be Lyme related. My own story echoes the same patterns – I had years of chronic UTI’s, searing pain in the bottom of my feet when I woke up in the morning, and unbearable exhaustion. None of the five specialists (gastro, rheumo, endocrine, family doc, urologist) – wait, that’s six. None of the SIX doctors I was seeing raised the possibility of Lyme disease. In all three of these cases, the Lyme question had to be initiated by the patient.
The doctor I mentioned above is lightyears ahead of her colleagues, understanding that our area is “ground zero” for Lyme, and when she sees patients with a constellation of symptoms, she says that she has to at least consider underlying Lyme infections.
But here’s the other problem….unless you were bitten by the nefarious tick within two weeks of any diagnostic bloodwork, the labs ordered by mainstream physicians are unlikely to produce positive results, even if you DO have Lyme…..which is why you need to find a Lyme Literate Doctor who understands the intricacies and the art of putting together a comprehensive panel of testing to unravel the chaos wrought by something the size of a grain of sand. And, as I mentioned a few weeks ago, LLMD’s (Lyme Literate MD’s) rarely take insurance. Doctors have to contract with insurance companies, who allow maybe 15 minutes per patient, and they have to have a high rate of turnover to stay afloat. (I am not at all blaming doctors, by the way – this is the system in which they have to operate.) But it’s part of the “beast” that is Lyme.
To the delight of my sons, last fall I wrote about how I reached a diagnosis with a title that made them super popular with their friends. But the short version is that for two years, I had daily symptoms of a UTI, but only tested positive on the FIRST doctor’s office “dipstick” test. Though I remained symptomatic and miserable for two more years, I never again tested positive for a UTI, and was told that it was inflammation – or interstitial cystitis. But I knew it was caused by a pathogen, because every time I had to take antibiotics for other things, my UTI symptoms abated.
After pouring through some very helpful online patient boards I found a group discussing interstitial cystitis, and many of them were seeing Ruth Kriz, a nurse practitioner who practices in DC, and was gaining some traction treating women with interstitial cystitis. Except, it isn’t really interstitial cystitis because there are actual pathogens that can and should be treated with antibiotics. Ruth found that 98% of her patients have one huge thing in common: Lyme Disease. Many of the people on the Inspire boards were flying ACROSS THE COUNTRY to see her. Ruth found a lab in Texas that does testing at the molecular level, and low and behold, I mailed my pee to Texas and finally got some answers. Layer upon layer of bacteria – E-coli, klebsiella, pseudomonas, and enterococcus. One year later I’m not symptom free, but I’m 75% better thanks to Ruth.
If you have recently received a Lyme diagnosis, or are suspicious of Lyme, here is a link to another lyme fighter who had Ruth as a “guest” on her blog one day, to explain why the diagnostic process is so complicated. And her second guest post is here, spelling out approaches to treatment, and offering helpful resources.
If you are newly diagnosed, you probably feel like you are drinking water from a fire hose. If you are a seasoned “brave soldier” (to borrow my friend, Kelly,’s phrase) you are probably sick of being sick. But I am confident that if we keep pushing, and keep sharing our stories, the “Plan B” that Lyme brings doesn’t have to wreck our futures. I believe the mainstream medical community will eventually catch up, but we have to keep advocating for better diagnostic tools and a cohesive body of knowledge about treatment that will help 1) get people diagnosed more quickly and 2) get them well a whole, whole lot faster.
The key, I think, is to try to make lemonade out of Lyme. To search harder for silver linings. This tiny blog has led at least 9 people to get tested and diagnosed with Lyme since I began writing. I’ve cleaned up my diet. I’ve learned to say no to things to conserve my energy for the people who need me. I’ve lowered expectations for myself. And I’ve experienced such love from people who didn’t have to lean in during this time, who owed me nothing, yet poured themselves into making my life easier and lighter and bearable.
If you are a new Lyme fighter, you owe yourself time to grieve before you make that lemonade. You will become that brave soldier, consuming rivers of information and medications, learning to advocate for yourself, and watching for side effects and detox reactions (known as herxing). Give yourself a few days to eat ice cream and watch movies, and then start thinking about how you can weave joy into your new lifestyle. At least now you know what you are fighting, and you can write your own Plan B.
So much love,