I have Lyme Disease! I never ever thought that statement would be followed by an exclamation point, but after three months of being told that there is nothing wrong with me and consequently blaming myself, it is such a relief to have a diagnosis and know that no, it is not all in my head.
After an incredibly frustrating appointment with an infectious disease specialist who insisted that I couldn’t possibly have Lyme disease (I had a negative ELISA test a few weeks after getting sick). He basically told me that if I wasn’t better in 3 months I had chronic fatigue syndrome and my only hope would be to join a clinical trial at Stanford (that’s bullshit by the way, CFS is so under-researched and misunderstood that any doctor who claims his way is the “only” way is way too full of himself. Props to the Stanford research center for their work though!)
After he said that, I stopped fighting the brain fog and just tried not to cry. Then I did what I should have done months ago — I made an appointment with my naturopath. I don’t know why I only go to her in times of desperation, she really is an angel.
I spent two entire hours sitting in her office, talking to her about my symptoms, and it was amazing to finally have a doctor listen to me and validate how awful I have been feeling. She immediately drew my blood and sent it to the Igenex lab in California to test for Lyme, and also sent me home with a cortisol saliva test to check my adrenal glands. She also sent me home with piles of supplements of course, and told me to eat greens every day to cleanse my liver… going the naturopathic route is more than just taking a magic pill, it’s a lifestyle commitment.
A couple weeks later, I received a positive Lyme test from Igenex, as well as the results of my adrenal test. It turns out that my body basically stops producing cortisol in the middle of the day, and then goes back to normal by night time. This means that my adrenal glands are working way too hard, but luckily haven’t stopped completely so they have the ability to bounce back! It explains why I crash so hard in the middle of the day. I’m drinking a lot of licorice tea to supplement them… love the sayings on the Yogi tea bags, hate the taste!
As for Lyme, I was a little unsure of listening to a Western Blot that was positive by Igenex standards but negative by CDC standards, but the thing is, it makes sense. Vermont has one of the highest rates of Lyme Disease in the country, and 50% of the ticks here carry Lyme. I also have spent my entire life running around in the woods, often wearing shorts, with little regard for bugs. I definitely check for ticks after being in my grandparents woods because they have so many deer, but I also ran cross country for three years in high school and I’m pretty sure the idea of ticks never even crossed my mind. The other thing I didn’t know is how small they can be. I’ve looked at pictures so I knew what to watch out for, but they were unlikely actual size. My naturopath told me that at some points they can be as small as a poppy seed.
So there is a very good chance that I could have been bitten at any point in my life, and then my immune system suppressed the bacteria until it was overwhelmed with mono and stress and couldn’t anymore. Along with that, I also have about 90% of the symptoms. I just never found a tick or a rash. But apparently only 30% of people actually find a rash.
So yes, it does scare me a little to be going on antibiotics without the support of my primary care doctor, but at the same time she wasn’t very supportive anyway. She got very caught up in lecturing me about Lyme controversy and her views about it, and neglected to pay attention to my symptoms, lifestyle, and situation. Our healthcare system is definitely flawed, but that is another tangent altogether.
I started doxy yesterday, and am feeling fine. I’m hoping that as it kills off the bacteria and they release their toxins that I don’t get much worse, but if I do I have my naturopath’s cell phone number, which she said to use with ANY questions… tell me your HMO doctor is that supportive! She also is referring me to a LLMD to help treat the Lyme and also because she suspects I also have Babesia, another tick born infection (which can potentially be fatal — thank goodness I didn’t give up after four doctors!). She also has been working with Dr. Richard Horowitz himself, so I feel like I am in good hands, finally!
Of course, I still have a long fight ahead of me, and it’s likely that it will have to get worse in order to get better, but I finally have a reason to hope, and a knowledgable and supportive doctor behind me. And I have to thank God for letting me be so lucky; it’s possible that I have had Lyme for a long time, but thankfully we caught it just three months after the symptoms appeared and I got ridiculously sick. Some people go for years, bouncing between doctors with no answers. Take professional freeskier Angeli VanLaanen for instance… she had chronic Lyme for years, and it took her more than two years of aggressive treatments to recover and return to skiing, but she did it! She is definitely my new inspiration, and a source of hope!