Getting preachy about how to treat disease isn’t my thing, so I’m just going to share my story. When it comes to what is happening in your body, you need to make the best decision for yourself. It can be hard in a world with so much information and so few answers. Everyone has their own opinion. I’m one of the many cases of Lyme Disease in Connecticut this year already, and I think it easily could have gone undiagnosed. That concerns me for others who may have Lyme disease, too.
I work with a naturopath and a medical doctor. Years ago I thought naturopaths were a little whacky. I went to one out of desperation because I was really sick and no one could figure out what was wrong with me. My naturopath figured out I was hypothyroid and had Hashimotos. These are not that hard to diagnose. My PCP at the time denied it (she’s no longer my PCP). An endocrinologist confirmed the situation and wanted to put me on levothyroxine. I was hesitant to take medication and read going gluten-free could help. I went gluten-free and my Hashimoto’s antibodies dropped (a good thing) and my thyroid numbers went back to their normal level.
This worked for me for two years and then I went on levothyroxine in addition to remaining gluten free. That’s the quick story of how I came to trust a naturopath. I’m not using this story to knock MD’s. I think I just personally had a bad one at the time. But it made me very committed to my naturopath. And in contracting Lyme this year, it was once again my naturopath that helped.
Lyme is misunderstood. It’s complicated, and can be hard to diagnose. NPR’s Where We Live just did a story about the increased incidents of ticks carrying Lyme in Connecticut this year. It’s worth a listen if it’s something you are worried about. But they think it’s showing up in higher numbers because the tick population has increased after a mild winter (that February thaw may not have helped kill off the ticks) and the mouse population is high. Mice are hosts for deer ticks. Mice like to live in Japanese Barberry (an invasive plant), so if you have some in your yard, you might want to consider cutting it out if ticks scare you as much as they terrify me.
When I was nine years old I had Lyme disease. After finding a deer tick on my abdomen and never developing a bullseye rash, I tested negative for Lyme. Six months later I couldn’t move my legs. I had Lyme. The treated me, and I was good to go. But I always like to joke that I’d be a lot smarter if I never had Lyme disease. Also, Lyme is thought to be linked with autoimmune issues. This possibly includes Hashimotos and thyroid imbalances.
This year when I got Lyme, I didn’t even consider it until a test came back positive. I thought I’d be much sicker if I had Lyme because I remembered not being able to walk as a child. But I never got sick as a kid with Lyme—no fever, no rash. Just one day I sat on the couch and then I couldn’t get back up. There was no fatigue. My legs just wouldn’t move. I know a number of people who have had Lyme and they seemed a lot worse off than me. Still, late last summer, I’d been bitten by a deer tick, and I said to Matt, “If I’m complaining of feeling sick in six months, don’t let me forget I got bit by a tick.” We both forgot. My symptoms were similar to a lot of the issues I had when my thyroid was off, so I attributed everything to my thyroid, but that was testing fine.
My major and most worrisome symptoms were extreme fatigue (without sleeping well) and brain fog. I’d confuse words and forget words. I told my 91-year-old grandma that she had a better memory than I did. It was true. I’d find myself reaching for very basic terms. But I thought that could be attributed to the lack of sleep. Matt would ask me what day I wanted to do something and I’d respond, “pasta.” Moments like that made me really concerned. Was I loosing it?
I also had some mild knee joint pain that I could l have brushed off as coming from workouts. My heart felt funny. It wasn’t palpitations, all I could say is that it felt odd. I was very aware of it and when I went to bed at night it seemed very obvious it was working. I was extremely light headed. Nearly every time I tied my shoes I thought I would pass out when I stood up. A couple nights a week, I’d get night sweats. And I felt like my brain and heart were buzzing—two sensations you might hesitate to mention to a doctor. I thought they might want to throw me in the looney bin.
My stomach was a mess, but testing found that was linked to SIBO (small intestinal bacterial overgrowth), which can sometimes develop with Lyme disease. It can also be unrelated, but Lyme disease affects your nervous system, which can influence a lot of our moving parts. Those intestines are moving parts we normally don’t have to think too much about. I didn’t relate any of this to Lyme. I was convinced it was all my thyroid. I could come up with an explanation for everything. Brain fog from lack of sleep. Knee pain from riding the bike. Heart issues from thyroid.
I was visiting so many doctors—a gastroenterologist for my intestines, my endocrinologist about my thyroid, my regular doctor’s office because my heart and light headedness (which may have been related to my thyroid actually or the Lyme). When all my numbers seemed good, my naturopath suggested I go see a naturopath she recommended who specialized in Lyme disease. They ran some blood work. I had to pay out of pocket for the bloodwork, but not to see the doctor. The test came back positive for a current case of Lyme. This wasn’t remnants of the last time I had it. Naturopaths can’t prescribe antibiotics, but I wanted to take them. They worked for me when I was nine. Lyme is pretty serious.
So it was back to my PCP where they reviewed all my bloodwork. They ran a test for Lyme disease that came back negative. And that’s what concerned me. My PCP was surprised. The test they ran was negative. The Lyme Naturopath had run a more in-depth test that tested more bands for Lyme disease. My PCP explained that they run the test she used and when results from that test are uncertain then they run a more extensive test like the one my naturopath opted for. They wouldn’t have run a more extensive test for me, but I still would have had Lyme disease, but I wouldn’t have gotten treatment. And I would have felt like I was just going crazy.
That’s the piece that concerned me. It’s important and helpful to catch Lyme early, and the test my PCP would have run would have missed my case completely. Catching Lyme early matters because the people I know who really suffer from Lyme catch it very late. Perhaps in part to poor testing. Doctors know the testing is limited. This isn’t something everyone’s denying. I’m just not certain why they don’t skip the first test and go straight to the more detailed option.
Dr. Ulysses Wu, Chief of Infectious Diseases at St. Francis Hospital and Medical Center on NPR mentioned that he was skeptical of some labs showing false positives. I wish he had time to go into more details on why because he also discussed the fact they think nine in ten cases of Lyme go undiagnosed. But he fears Lyme is both over and underdiagnosed. You wouldn’t want to miss an autoimmune disease or cancer and think you have Lyme disease.
Dr. Paul Fiedler, the Chair of Pathology and Laboratory Medicine and principal investigator of Lyme disease research at Western Connecticut Health Network, pointed out on the show that the two-tier test recommended by the CDC only comes back positive the first time it’s administered a third of the time for patients that have Lyme symptoms.
You may not develop symptoms until weeks or months after being bitten so by the time you go in for a test, you may have been living with Lyme for a while. Often the same test will eventually be positive a few weeks later. So your doctor would need to know to run the test again. This is in part because the test doesn’t look for Lyme disease. It looks for antibodies. Our immune system has to start fighting the Lyme before anyone can catch that we have it. I would assume once you have symptoms the body is doing that, but maybe not. Dr. Fielder and his team are working to come up with better testing, and it looks like they have some promising results. Both doctors emphasized that testing can be accurate when administered appropriately. Again, I’m not knocking doctors here. They can’t know everything, but you can advocate for yourself and ask for a retest or a more in-depth test.
I opted to treat with antibiotics and herbal medications. I’m done with the antibiotics and continuing with the herbals for the next couple of months. I’m feeling better—so much better. Things still aren’t perfect, but I’m certainly on the mend. No more night sweats and my heart feels fine. And when I stop treating then it’s just a waiting game. I wait and see if I feel sick again. I’m thinking positive. My body fought Lyme back at nine, I’m confident it can do it again.
The doctor’s I use:
Dr. Marina Franzoni, Hart Acupuncture & Nutrition in Farmington, CT –my regular naturopath
Dr. Keith Yimonyines, Tao Vitality, Hebron, CT –my Lyme naturopath
Dr. Sachdev, Connecticut GI, Glastonbury CT –my GI
I won’t weigh in on my PCP because while I liked her, my Lyme diagnosis was just my first visit with her. We’d just gotten assigned to each other.
From Dr. Theodore Andreadis, Director of Connecticut Agriculture Experimentation Station & Center for Vector Biology and Zoonotic Diseases (from the Where We Live episode):
The testing center is getting 10-times more ticks sent for testing than usual in Connecticut
Of the over 1,000 ticks they have already tested (prior to peak season) 38% are positive for Lyme. Fifty-percent have Lyme or another tick borne illness or both.