A Call For More Lyme Literate Doctors
Lyme Disease is Increasingly Common: Helping Our Daughter Through It Shouldn’t Have Been So Difficult
Summertime means enjoying being outside. With COVID-19 severely limiting indoor social activities, people are rushing out into nature eager to spend time outside of their homes. While everyone is rightly focused on COVID-19, Lyme disease remains a risk this summer, like any other. Lyme disease is quietly on the rise, which means we all need to be vigilant about tick bite prevention. Further, we should be aware of the often subtle and sometimes confusing signs and symptoms of Lyme disease and it’s co-infections.
The symptoms of Lyme disease are chameleons; they hide deep in the tissues of the body; they come and go, often without a discernible pattern, and most of them are easily attributed to several other ailments. As a result, a doctor focused solely on the “classic” symptoms will often miss the forest for the trees, particularly doctors that are predisposed not to take Lyme seriously. This is what happened to us with our daughter.
This country needs more doctors who are able to correctly piece together the Lyme disease puzzle so that more people can be treated successfully and quickly. Unfortunately, for a variety of reasons, Lyme can be (strangely) a controversial diagnosis. And even with doctors that are ‘switched on’ to the symptoms and willing to consider Lyme as the culprit, it can still be difficult to diagnose. Patients — and their families — need to be better informed about the symptoms, risks and prevention. And we must all be our own advocates when it comes to Lyme disease.
Our goal in sharing our story is twofold: (1) to shed some light on the confusing and sometimes contradictory information about Lyme disease that we learned while caring for our daughter last year, and (2) to reassure anyone who feels their doctors are not listening to them. It’s okay to do your own research (using reputable sources) and it is sometimes necessary to get another opinion, including consulting integrative medical and naturopathic doctors.
Every summer an article or two about Lyme disease circulates, focusing on tick bite prevention, highlighting “classic” symptoms such as the bullseye rash, and noting the rising numbers of those afflicted. Many articles mention that Lyme disease is often mis-diagnosed, and occasionally there are stories discrediting opportunistic (and sometimes unqualified) health care providers who use Lyme as a pretense to take advantage of patients. There is a growing community who describe themselves as “chronic Lyme” or “post Lyme” patients, whose symptoms persist despite months or years of treatment, and there is an active debate about whether those who continue to suffer have been properly diagnosed. This post is not intended to engage in that debate, or to comment on anyone else’s health or medical experience but our own.
Last summer the New York Times published an op-ed in which a mother stated that her child had Lyme disease and it really wasn’t that bad. That was not our experience.
OUR STORY
Our 11-year-old daughter had a combination of three tick-borne diseases last year: Lyme disease, Babesiosis, and Mycoplasma Pneumonia. We don’t know when or where she was bitten by the tick, but we have an educated guess. What we know for sure is that it took months to get a diagnosis; doctors weren’t listening to us or to her, and all the while she kept getting sicker.
We spend our summers in Massachusetts. We never saw a tick on Lucy or any indication of a tick bite (more on that below), and we returned to California in September completely unaware that Lucy had contracted Lyme along with two co-infections.
In October, Lucy had what seemed like the flu — it was uneventful and short lived. Sometime that month she also had some itchy bumps on her lower back that looked like bug bites; we investigated her room and her bed, and finding nothing, decided that it was a fluke. Lucy ended up having several bug bite-type rashes throughout the next few months; they would come and go. In December, she started complaining of being tired but it was very easy to dismiss that as the culmination of a busy first term at school. We did not see any doctors; it all seemed well within the range of normal and at that point we had no reason to suspect these were dots to be connected.
All through January, Lucy was supposed to be taking weekly swim lessons but she was so tired after the school day that she had no energy for any other exercise. We met with the school counselor toward the end of the month; we thought that Lucy was maybe not eating enough at school, or possibly having a tough time with classmates, and that was sapping her energy. Neither of those scenarios were the case.
By mid-February, Lucy was so exhausted that she missed a week of school. She was not otherwise sick — no fever, cough or congestion; her appetite was normal. She was just completely wiped out and couldn’t get out of bed, so we went to see our pediatrician. I recounted her bouts of ‘flu’ and fatigue in October and December, and mentioned Lyme disease but was dismissed. The pediatrician blamed poor sleep quality so we focused on earlier bedtimes.
In March, Lucy complained that she had trouble hearing in one ear. We brought her back to our pediatrician, where she scored very low on the hearing test. We made an appointment for Lucy to see an audiologist for a complete exam. After two exams, the audiologist said that Lucy’s test results were too inconsistent to diagnose. Rather than take the time to make sure Lucy had properly understood the instructions, or consider the possibility that hers was an unusual case, the audiologist told us in so many words that Lucy was making it up, and suggested that there might be ‘something going on at home’. We felt we were dismissed quickly and rushed out the door.
Next came ringing in one of Lucy’s ears. We again went to see our pediatrician, and subsequently an ENT. The ENT reviewed the audiology report and performed an exam; said that she didn’t see anything that would cause ringing in the ear and seemed doubtful that Lucy was experiencing it at all. She told Lucy to keep a journal documenting the ear ringing, and report back in 3 months. I again asked about Lyme disease and was again dismissed by both our pediatrician and the ENT — once again, mental health issues were indicated as the source of Lucy’s symptoms.
By mid-April, with no improvement in any of Lucy’s symptoms, we asked our pediatrician for a Lyme test. She said it was nearly impossible for Lucy to have contracted Lyme disease in California (which is incorrect), plus we had never seen a bullseye rash, nor did Lucy have joint pain. We persisted, reminding the doctor that we spend our summers on the East Coast, so she finally, and reluctantly agreed. She also ordered a complete blood panel for Lucy so that she could check for a variety of other, more likely, reasons for her symptoms.
When the blood test results came back, our pediatrician called us and said, “Great news, Lucy’s bloodwork looks fine and she doesn’t have Lyme disease.” This did not seem right to us, but we believed the test results because we did not know at the time how inadequate that particular blood test is. The pediatrician’s conclusion was that Lucy had some mental health issues that were causing her physical symptoms, and that she should see a therapist. We felt like she was not interested in any deeper discussion of possible culprits; she was happy to hand Lucy off to a mental health professional.
On Mother’s Day (mid-May), Lucy suddenly came down with a high fever and was overwhelmingly exhausted. We saw our pediatrician immediately — in a perfunctory visit she tested for strep (which was negative) and concluded it was the flu; she told us to come back if Lucy’s fever didn’t break within a couple of days. The visit was quick; even though I reiterated all of the symptoms to date, I felt that we were rushed and there was no real discussion. By the end of the week, Lucy was not better. We went back to the doctor — this time she tested for flu (which was negative) and decided to order a chest x-ray. The x-ray showed that Lucy had pneumonia, and the pediatrician started her on an antibiotic.
After several days on the antibiotic, Lucy was not improving at all. At this point, frustrated with the lack of progress with our pediatrician, we decided to visit a naturopathic doctor (naturopath) who I had seen previously. For those unfamiliar, naturopathic doctors are trained to focus on the root cause of symptoms instead of simply treating the symptoms, as western doctors do. Naturopaths complete at least four years of medical training (in addition to schooling for any further degrees they pursue), and their coursework includes rigorous training in pharmaceuticals, nutrition, psychology, herbal medicines, homeopathy, and a variety of alternative treatments. They use a broad arsenal to treat health issues, including advising on how lifestyle choices impact health. Put simply, they take a holistic approach — which turns out to be uniquely well suited for a puzzle like Lyme disease.
We recounted the entire story to our naturopath, and she asked Lucy some questions about her symptoms. She took copious notes and circled back and probed deeper into some of Lucy’s answers, asking follow-up questions that at the time seemed totally unrelated. She then said to us, “I think Lucy has Lyme disease and Mycoplasma Pneumonia, and I’d like to get her tested for Babesiosis because I think she may have that, too.”
Many doctors over the course of several months didn’t get to this diagnosis — in fact, even when we suggested it, those doctors wouldn’t seriously consider it as a possibility. Our naturopath confidently came to that conclusion during the course of a one-hour visit.
Our naturopath explained that the simple blood test ordered by the pediatrician is insufficient for properly diagnosing Lyme disease (more on this below). She also told us that the antibiotic our pediatrician had prescribed was not effective against Mycoplasma pneumonia, which is why Lucy wasn’t improving. One stroke of luck, however, was that the antibiotic Lucy was taking would begin to work on the Lyme infection.
She instructed us to get Lucy tested for Lyme disease and Babesiosis via a company called IGeneX, one of the top tick-borne disease testing centers worldwide (more on testing below). There are still variations in how Lyme shows up in the body, but the IGeneX test is the best guide. Lucy’s test results for Lyme disease were partially conclusive and partially borderline, but the Babesia bacteria showed up very clearly.
Lucy had a separate blood test through Quest Diagnostics specifically for Mycoplasma Pneumonia, which came back overwhelmingly positive for the bacteria (more on this below).
In light of the test results and the symptoms, our naturopath concluded that Lucy had all three (Lyme, Babesiosis and Mycoplasma Pneumonia) and needed to start treatment right away. This was May 2019, seven months after she first showed flu like symptoms, four months after she first saw a doctor, and 9–10 months after the tick bite (based on our best guess of when she likely was infected).
Our naturopath prescribed various antibiotics, medications and herbal supplements, which helped Lucy clear her immune system relatively quickly. Doxycycline, Mepron and Azithromycin were the heavy hitters. Each one comes with it’s own set of instructions about when they can be taken and with which foods, plus the added hassle of Doxycycline causing skin photosensitivity (and this was summertime). The various supplements helped with vitamin deficiencies and immune boosting, as well as calming a nauseous stomach and sleeping better at night. After six months of treatment, Lucy was free and clear of all three infections by October 2019.
As a precaution, we also saw a tick borne disease specialist in early October. Our naturopath recommended we see him in case he had any further treatment suggestions, and also just so that we would have him on the team. He ordered another IGeneX blood panel and three weeks later the results came back clear. He was very knowledgeable and helpful, but mostly he confirmed that our naturopath had followed the protocol he would have chosen for Lucy himself.
Getting to the diagnosis was the most frustrating few months we have ever experienced as parents. Having doctor after doctor ignore us, and, even worse, make Lucy feel that she was making up her symptoms, was disheartening at best, terrifying at worst.
Once we had the diagnosis we felt much better — we had something to focus on and could begin the real work of getting rid of it. We were already 9+ months behind the onset of the disease; we didn’t want any further delay. It was a difficult several months of treatment, but by October it was over, and Lucy was back to being her healthy, energetic self by Thanksgiving.
SOME SYMPTOMS — MYTHS AND REALITIES
Bullseye Rash
Everyone immediately thinks of the “classic” Bullseye rash (called erythema migrans) with Lyme disease. Although many people never see the tick, when a bullseye rash shows up they know to go to the doctor. But what if you don’t see the tick and you don’t get the bulls-eye rash? The CDC website says the rash occurs in 70–80% of people bitten by a Lyme tick. The Mayo Clinic doesn’t give a percentage. Other health-related websites say 60–80% of people get the rash; and some say fewer than 50% of infected people will get the rash. And there is also of course the possibility of you having missed seeing the rash.
No matter which numbers you look at, it is clear that relying exclusively on the appearance of the bulls-eye rash is a faulty strategy — somewhere between 20% and upwards of 50% of people that have been infected with Lyme disease will not get a bullseye rash. Lucy never got the bullseye rash.
Skin Rashes
Lucy did however develop an itchy rash on her lower back that would come and go. No one could figure out what the rash was from. The rash did not have any discernible pattern — in fact it looked more like a random assortment of bug bites than a ‘rash’ per se. This is impossible to pin on Lyme disease, although research on Lyme symptoms does mention a periodic itchy rash on the trunk of the body. Lucy has not had a recurrence of the rash since her recovery.
Joint Pain
Joint pain is another “hallmark” of Lyme disease, except when you don’t have it, like in Lucy’s case. She developed some joint pain during her treatment and had some lingering joint pain once she was free and clear of Lyme, but she did not complain of joint pain at the outset. This is another “classic” symptom of Lyme disease that is not a particularly reliable indicator: most medical research states that only about 60% of patients develop joint pain as a symptom of late stage Lyme disease. A common misdiagnosis is Rheumatoid Arthritis; so much so that IGeneX has a page on their website devoted to this potential confusion.
Fatigue
This was one of Lucy’s primary symptoms. She just couldn’t escape the exhaustion. Unfortunately there are myriad reasons why a child (or anyone) can be exhausted. So this wasn’t very helpful in narrowing down the cause. Crushing fatigue is, however, a hallmark symptom of Babesiosis. Babesiosis is caused by parasites that infect the red blood cells, thus causing severe exhaustion. Our naturopath focused on Babesiosis immediately when we described Lucy’s persistent fatigue.
Hearing Loss and Tinnitus
Hearing loss in one or both ears, and tinnitus (ear ringing), are relatively common symptoms for both Lyme disease and Babesiosis. Various studies have found that a significant percentage of people with untreated Lyme disease develop hearing problems and/or tinnitus. For a doctor that is paying attention to the overall picture (such as our naturopath), a patient with otherwise unexplained hearing loss and tinnitus, following several months of persistent fatigue and periodic flu-like symptoms, is in fact a fairly obvious case of Lyme. Once you add in the pneumonia (caused by a bacterial co-infection that is very common with Lyme) it seems even more obvious.
Lethargy / Depression
Lucy clearly suffered not only from exhaustion, but also from lethargy and depression. These are in fact fairly common symptoms of Lyme. For Lucy, as for many others, these symptoms were exacerbated by the frustration, fear and self-doubt that accompany an undiagnosed illness with symptoms that continue to worsen, while doctors repeatedly tell you there’s nothing wrong and it must be in your head.
Insomnia / Brain Fog / Short Term Memory Loss
Lucy didn’t experience these symptoms until after treatment began (more on that below) but they are also fairly common for Lyme disease and Babesiosis. Insomnia is in fact considered a “classic” symptom of both, although as noted above, many of the “classic” symptoms turn out to be not particularly common.
Symptom Flare-ups During Treatment
Lucy experienced some additional symptoms only once treatment had started, but not beforehand. Our naturopath explained that the reason it can be difficult to rid the body of Lyme and Babesia bacteria is that the bacteria slowly burrow their way into muscles and soft tissue. As the treatment flushes the bacteria out of one’s tissues and it returns to the blood stream, it can cause a recurrence of symptoms, including some that the patient may not have experienced before — it is all completely normal, and as the bacteria is eradicated the symptoms start to fade. For Lucy, these symptoms were insomnia, brain fog and short term memory loss, along with some joint pain, but they can and will vary for each individual patient.
Other
There are many other symptoms of Lyme disease and Babesiosis. One of the most baffling and frustrating things we discovered about the symptoms of these tick-borne diseases is that they can present differently — or, in fact, not at all — in the context of a co-infection (as compared to an infection of solely one or the other). Symptoms can be exacerbated by the co-infection, or cancelled out. For example, one study found that “nearly all” patients infected with Babesiosis but not Lyme will experience night sweats; of those with both Babesiosis and Lyme, however, the incidence of night sweats drops to 42%. Lucy did not experience night sweats.
This makes tick-borne illnesses extraordinarily difficult to diagnose, particularly when a doctor is skeptical and/or erroneously looking solely for the presence of one or another of the “classic” symptoms. Much more research is needed, and increased education for our doctors is imperative. IGeneX has a more thorough description of Lyme disease symptoms than the CDC, including when those symptoms usually develop in the body.
Lyme Disease: the Great Pretender
Lyme disease is known as the “great pretender” because it presents itself differently in each patient. While some symptoms of Lyme disease are clear indicators (the bullseye rash, for example) they don’t occur frequently enough to rely solely on them to diagnose. Further, symptoms often come and go, as we saw with Lucy. At best, the symptoms can be markers or guideposts for an observant doctor and patient. Each symptom could be the result of so many other ailments, issues, allergies, or conditions that Lyme disease is often relegated far down the list of potential causes in the absence of the “classic” symptoms or the patient reporting having seen a tick. Combine this with a general lack of knowledge among the medical community (particularly in parts of the country that are not considered to be high risk), and the fact that the test is difficult to interpret and is often inaccurate or inconclusive, and you end up with a lot of doctors unwilling to make — or even consider — the Lyme diagnosis.
We certainly did not expect our pediatrician, or any of the other doctors we saw, to be fully versed in all of the possible Lyme disease symptoms and co-infections, or to be able to immediately diagnose Lyme disease at the first visit. What we expected, however, was that our doctors would listen carefully to Lucy and to us, and do some research. We were disappointed to learn that they did not think about the big picture or use common sense, but instead focused on a “checklist” of symptoms that only partially applied to our circumstances.
WHERE IN THE U.S. CAN I CONTRACT LYME DISEASE?
Because it was initially discovered in Lyme, Connecticut, Lyme disease has historically been considered a Northeast tick disease. However, that has become outdated — Lyme is transmitted by ticks that attach themselves to animals; over time it has spread. The CDC states that Lyme disease is prevalent in the mid-Atlantic and Northeast, northern central states, and the West Coast, particularly northern California. IGeneX and other sources say Lyme disease is present in all 50 states. Additionally, there are various other tick-borne diseases in all 48 contiguous states.
Babesiosis is present in western states, but ticks that carry both Lyme and Babesia are far more prevalent in the northeast — that’s why we concluded that Lucy likely was bitten by a tick in Massachusetts rather than California.
HOW LONG DOES IT TAKE FOR LYME DISEASE SYMPTOMS TO APPEAR?
Symptoms can show up almost immediately (the bullseye rash often occurs within hours of a tick bite) or up to 9 or 10 weeks after the tick bite, like in Lucy’s case. Some people get sick very quickly. In Lucy’s case, it took a while. There are other cases where the Lyme bacteria can lie dormant in the body for months or years before symptoms appear, or occur with insufficient regularity that a patient or doctor thinks to test for Lyme disease.
TESTING
Lyme disease is an infection caused by the bacteria borrelia burgdorferi, which burrows into the tissues throughout the body. The first stop for most Lyme disease testing is Quest Diagnostics or LabCorp. Those two labs run the standard CDC Lyme disease test, which is an antibody detection test called ELISA (Enzyme-linked immunosorbent assay). If the antibodies are positive then another test is run to confirm, which is called the Western Blot test.
The CDC maintains that their test is accurate when administered correctly. However, it’s a tricky situation with the Lyme antibodies. If you take the test too early, your body won’t have developed sufficient antibodies to register as positive on the test. Tests performed later tend to be more accurate, however the test is not 100% accurate. Several studies have shown that the CDC’s Lyme disease test is inaccurate because it only tests for anitbodies that have developed in response to the bacteria and not the presence of the bacteria itself. Further, a patient may test negative if they’re infected with a species of bacteria the test is not equipped to detect.
The CDC’s Lyme disease test has two components: one set of antibodies shows if the person was infected less than three months ago (IgM antibodies = acute Lyme disease). The second set of antibodies shows if the person has had Lyme disease for more than 6 months (IgG antibodies = late stage Lyme disease). For each set of antibodies there are 4 markers that need to show up “positive” for a positive diagnosis, but it is possible to have only 2 or 3 markers show up and still have Lyme disease. And to further complicate the testing, the test can show not only “positive” or “negative” but also “inconclusive”. To make matters even more complex, the CDC uses a different set of criteria than the rest of the world to diagnose Lyme disease.
Lucy’s ELISA test was one marker shy of a “positive” test result for IgM, and “indeterminate” for IgG, which the lab and the CDC treat as an overall “negative” result. So our pediatrician called us with a negative Lyme diagnosis for Lucy based on test results that she didn’t fully understand, and a test that has been proven to be unreliable. Further, she failed to view the test results in context with the symptoms.
The next level up for Lyme disease (and co-infection) testing is IGeneX Laboratories, as mentioned above. This is where our naturopath sent us after our first visit with her. She wanted confirmation of what she correctly suspected was both Lyme and Babesia bacteria.
IGeneX lab tests for both antibodies and IFA, which is immunofluorescence testing — this basically looks for any actual fragments of the bacteria or parasite being tested. Put simply, IGeneX tests for additional markers that Quest and Labcorp do not.
Lucy’s IGeneX blood test results showed possible / likely Lyme Western Blot IgM exposure. Her results fell into the Positive or Indeterminate categories. The Lyme Western Blot IgG exposure was negative. For the Babeoisis, IgM was negative, but IgG was very much positive (quite a high number). Thankfully our naturopath was able to help us make sense of the results, as they are very confusing. The bottom line was that if you looked at the test results, the presence of an obvious co-infection, and Lucy’s symptoms, it was very clear that she had Lyme disease and Babesiosis.
The test for Mycoplasma Pneumonia is a simple blood test at Quest Diagnostics. Mycoplasma Pneumonia is confirmed via blood test and not a chest x-ray. Pneumonia is found in the lungs on a chest x-ray (so our pediatrician was half right), but to get a specific Mycoplasma Pneumonia diagnosis you also need a blood test. Lucy’s blood test showed very high levels of the mycoplasma bacteria, which is a common cause of pneumonia and also a common co-infection of Lyme disease. Mycoplasma are extremely small bacteria — so small that they don’t have a cell wall; that’s why many antibiotics (which kill bacteria by rupturing their cell walls) are not effective on Mycoplasma.
INSURANCE COVERAGE
It should come as no surprise that our health care system and insurance companies do not adequately cover treatment of Lyme disease. Some medications are covered; some are covered but not for Lyme treatment; and some aren’t covered at all. Some bloodwork is covered, but the IGeneX test is not. And if you add in the vitamins and herbal supplements, which help the body’s immunity and increase the chances of successfully recovering, you are on your own. None of that was covered for us.
Certainly our naturopath wasn’t covered. We went to several in-network doctors for all of the various symptoms, and they all missed the diagnosis. Then we took Lucy to the naturopathic doctor, who correctly diagnosed and treated her, but our insurance wouldn’t budge. They covered a tiny fraction of the cost.
CONCLUSION
The end result for Lucy was a good one, but only because we left our pediatrician and sought a second opinion from our naturopath. We were way outside of our comfort zone when we decided to do that, but we knew that the various doctors we had seen over the few month period were somehow missing the full picture. We did not realize at the outset that naturopaths are doctors with several years of medical training, who can prescribe pharmaceuticals and who are more focused on preventative medicine than western doctors, who tend to focus on treating symptoms. Naturopaths are also more broadly focused and do not operate within a narrow silo like most western medicine doctors. We still have all of our western medicine doctors, of course, but we have taken a big step toward a more preventative health care approach by routinely consulting our naturopath.
We acknowledge that diagnosing Lucy was difficult because she did not have two of the “classic” symptoms (bullseye rash and joint pain). We also acknowledge that the initial test offered by the regular blood labs (the CDC test) is not only difficult to read, but can actually provide inaccurate results. But this is precisely why doctors need to listen to the patient and use common sense to evaluate the symptoms. It’s also why further education and training is needed for doctors across the country. Lyme disease is not going away; if anything, it will continue to spread. Much more research is needed around testing, symptoms, antibody production and treatment.
In short, we need more Lyme-literate doctors. More doctors need to know about IGeneX lab testing, and they need to know that some of the symptoms they think of as “classic” markers in fact don’t show up in more than half of patients. But above all, we need to make sure doctors are able to take the time to listen to their patients, and do follow up research if necessary. We felt all along that our doctors were in too much of a rush to get us out the door. Lucy’s symptoms did not neatly fit into their checklist so they dismissed our view that she had Lyme disease, and fell back on a “mental health” diagnosis.
This says just as much about the state of our health care system and how doctors are trained as it does about the particular doctors who saw us all along this journey. Our health care system is in need of an overhaul; both our doctors and patients deserve better. Diagnosing Lyme disease is just one example.
