I wrote this post over two months ago and just realized I should get around to posting it. If there’s anything I’d want people to know about Lyme disease, it’s that oftentimes the normal signs are not present, and the symptoms are different in everyone. Oftentimes the symptoms appear over such a prolonged period of time that you get used to them, and stop realizing that something is off until it’s REALLY off. Lyme disease is the fastest growing vector-borne illness in the US right now, so please take it seriously, and get yourself tested if you’re not feeling yourself and have eliminated other causes. Here’s my story.
I think a lot of people are wondering how I ever got linked to his crazy disease and I ask myself the same thing all the time. It was a long process of seeing doctors from many different disciplines, and finally one that knew exactly what she was looking at.
I mentioned in a previous post that I was having some weird fatigue issues a couple years back, and then later on I started having some joint pain in my hips. Neither of these things caught my attention as signaling a major illness though. It was a few months after that that I had my first UTI ever, and then a second two months later, that I started to worry about what was going on with my health.
Right before I moved to France, I saw a urologist who checked me out and told me everything was fine. She gave me a cautionary dose of antibiotics and sent me on my way. Everything was great until about three months into the year when I developed what I thought was another UTI. I saw a doctor in France who gave me a prescription for antibiotics despite a negative urine culture. I took the antibiotics and the problem went away. A few months later the same thing happened. Again and again I developed UTI-like symptoms, had a negative urine culture, took antibiotics, and the problem went away. I think it happened five or six times over about eight months. Finally in May I had another episode and saw a different doctor. This doctor refused to prescribe me antibiotics. In the long run it was helpful, but in the short term I was really angry and frustrated. The weekend after it started, I had plans to meet Erik in Amsterdam for a long weekend. The whole weekend I had a sinking feeling in my gut that something was seriously wrong. I just wanted it to go away.
Around the same time, I started to notice my digestive system was not as functional as it normally is. I saw another doctor about this; and she diagnosed me with IBS and prescribed me some pills.
During this whole time I hopped from diet to diet as I tried to figure out what was wrong with me. I tried a bladder-friendly (interstitial cystitis) diet, FODMAP diet, low yeast diet, gluten-free diet… you name it I tried it. Some things seemed to help a little bit but nothing was completely taking care of the problem. I grew more and more frustrated as either each diet failed or I failed the diet when life became too stressful.
It’s hard to imagine that I was still living as all of this was happening. Somehow I was. I went on vacation with my boyfriend, worked, prepared to move to Sweden, and just hoped that things would improve with time. I was also counting down the days until I was back in the US and could see a doctor in my own language, with health insurance.
When I got back to the US, I saw quite a few doctors. I saw the urologist again, who made me do a bunch of uncomfortable tests and then basically couldn’t help me past that point. I saw my gynecologist who just referred me back to the urologist. I saw a general practitioner who was nice enough to run all of the tests that I wanted, but then said after nothing obvious was showing up that it was out of his area of expertise, and to go back to the urologist for more tests. Then finally I saw a functional medicine doctor who listened to me talk for two hours and told me flat-out that I had Lyme disease.
I was relieved to finally have someone give me a concrete diagnosis, but also extremely skeptical that I had Lyme disease, especially without the test results to back it up (although I took a test that same day, it took weeks for the results to come back). I don’t remember being bitten by a tick (although growing up in Minnesota I was definitely around them), I never got a rash, and I really didn’t have the classic lyme symptoms of joint pain and fatigue. It all just seemed too crazy to be true. My hypothesis at the time was that I had some kind of bladder infection that wouldn’t show up on a standard culture, and needed a longer dose of antibiotics to eradicate.
What made matters worse was the level of skepticism around me that I had lyme disease. Some of those close to me had a really hard time believing it, and sent me articles about how lyme is over-diagnosed, and how it’s only true for a fraction of the people that are diagnosed with it. Actually, probably the reverse is true. Only a fraction of people that actually have lyme are getting an accurate diagnosis. All my loved ones wanted was for me to get better, and this was their way of trying to help point me in the right direction, but it caused me a lot of internal turmoil.
To make things more confusing, I took the ELISA, the standard lyme test that most doctor’s offices give, as well as tests for common co-infections such as mycoplasma, bartonella, babesia, ehrlichia and others, and every single one came back negative. A warning to anyone suspicious that they have lyme – these tests are not adequate. They have been shown to be neither specific nor sensitive enough to register all cases of lyme. In fact they’re believed to miss about 30-35% of instances of the disease.
This is why my functional medicine doctor made me take an Igenex Western Blot test, which is much more sophisticated, thorough, and therefore not covered by insurance (#America). The test also takes a while to get results back, about a month. One month later, it came back positive. Sort of. There are three different parts of the test, one came back positive, one came back indeterminate, and one came back negative. This is actually a very strong result for Lyme, because it is such a stealthy organism, and so adept at evading the immune system, that many people who are very sick do not register at all. These tests work by measuring the immune response, in the form of antibodies, and in many cases, the person has literally become so sick that their immune system has stopped responding. Therefore they have a negative test result.
In my case, the positive portion of the test showed that my blood had built up several lyme-specific antibodies, to the borrelia bacteria. If I had been seeing only a traditional western-medicine doctor, they would have called this a negative result, because I didn’t have all five antibodies required. They ignore the fact that your body should not be building antibodies to lyme at all – whether it’s one type or five that show up. Maybe later on I’ll devote a blog post to the testing for lyme, but suffice to say that my result was essentially positive.
I think I received this test result with equal amounts relief and horror. Relief to have finally found a cause, and horror that this horrible disease had found a home in my body. I knew that it was going to be a long road ahead.
Since then, I have had many realizations. The more that I have learned about the disease, the more sense everything has made to me. Originally I thought I’d had Lyme maybe 3 years or so – since the fatigue, muscle/joint problems and bladder problems presented themselves. Now thinking more deeply about things, I think it’s quite possible I’ve had it for over 10 years or so. I’ve always been super healthy – didn’t have a lot of infections as a child, never broke a bone, never had mono. But since I was 12 or 13 I’ve had weird health problems that doctors didn’t seem to find any cause for. I got used to every one of them, and they didn’t affect my health in serious ways, but I believe they were signs of a disease lying dormant, and waiting to strike when my immune system was compromised. The more research that is done on Lyme, the more it seems that this is the case with a lot of people. You may get bit by a tick as a child, have no symptoms and forget all about it, but the bacteria can hide for many years until they deem it is safe to come out.
Prevention is the best cure, so please take this seriously and protect yourselves from this awful illness! Bug sprays with DEET are supposedly the only sprays effective against ticks. If you don’t want DEET on you, check yourself extremely well after being out in the woods. Deer ticks, and specifically the nymph form which are most likely to spread Lyme, are as large as the point of a pencil, and easy to miss. If you believe you have been bitten by a tick, I would go in and ask to be put on antibiotics, just as a preventative measure. Especially if you see a red bulls-eye rash, or have flulike symptoms – although neither of these are present in all cases. I never experienced either.
So that’s my story. Do you have friends with Lyme? Did they have similar symptoms or different? I have been meeting quite a few fellow Lymies over the past few months, and they come in all shapes and sizes. Or if you have Lyme, how has your experience been the same or different? I’d love to hear from you.