1. When were you first diagnosed with Lyme disease? Were you diagnosed with any other tick-borne diseases? If so, which ones?
It took doctors two years of testing to finally diagnose me, and my initial diagnosis was for Lyme (borrelia) only. After being treated for only Lyme disease for a year and a half and not responding well to antibiotics, another doctor tested for co-infections and found traces of bartonella. A year and a half later I was also diagnosed with babesia.
2. How long was that after you first developed symptoms or found a tick?
I never found a tick – never had a rash. And because I was in such good physical condition at the time, it took a long time for symptoms to emerge. From the time I first noticed symptoms, it took two years of testing for me to get diagnosed.
3. What steps have you taken to help cope with your symptoms?
Initially, I attacked the illness with antibiotics, which gave me crushing Herxheimer reactions. It took years for me to find out I could take detox measures to reduce those symptoms, using herbs, changing my diet, exercising, etc. Daily meditation also works really well.
4. How does encouraging and connecting with others in the Lyme community help you deal with the disease in yourself and/or your loved ones?
At first I joined some online support groups, but I couldn't relate to the conversations that really focused on everyone's symptoms and misery. I was always more interested in breaking through the depression and bad feelings that can arise from the illness. It was only after I started feeling better that I felt compelled to reach out to others to let them know there is a light at the end of the tunnel... and that wallowing in despair is not the way out. I found the more I reached out and connected with others to make them feel better, I too felt 100 times better!
5. What do you think is the most important thing about Lyme and other tick-borne diseases that the average person who hasn’t been affected by them doesn’t know and should?
Because tick-borne illnesses can be a collection of bacteria and parasites, the disease affects people differently, depending on their physical make-up and the bugs they've been exposed to. Not everyone gets a bulls-eye rash. I didn't. Not everyone gets a fever. I didn't. So if you ever find a tick on your body, start paying attention to the little physical changes that might happen in your daily life. As soon as you start to feel something weird or unusual, go see a Lyme literate doctor immediately. Waiting is not a good idea!
6. What has been the most difficult challenge for you in coping with this disease?
The symptoms can change your personality and make you more reclusive and withdrawn as a person, while on the outside you still look like the same individual. That's difficult for people not dealing with the disease to cope with, and it can really damage personal relationships. I used to brew my own beer, and I became sensitive to alcohol since I developed Lyme. I can't drink more than one beer without getting a bad reaction. That really sucks for a homebrewer!
7. How did you rise above it?
So, I've taken up other hobbies... like raising a 9 year old daughter! I've also done a lot more songwriting because I'm a musician, and I've released one CD "Obrigado" that was written mostly about overcoming the illness. The music can be found at www.thezenengines.com.
I think the most obvious changes that need to be made are with developing better diagnostic tools and treatment programs. Anyone who has gone through more than a year with the illness will tell you that it can be a struggle just to be diagnosed. And diagnosis is when the real journey begins. It would be great if tick-borne illnesses could be approached with the research, funding and vigor we saw for HIV/AIDS more than a decade ago.
9. Do you have any favorite holistic methods that you use to alleviate and reduce your symptoms that you’d like to share?
I do a combination of some Gerson therapies (www.gerson.org), some herbal remedies, meditation, exercise and a healthy diet. I also feel strongly that NOT focusing on your symptoms and illness and instead concentrating on more positive things in your life is a great way to break through your healing plateaus. I think it's important to always have something to look forward to everyday... and that's something I lost when I was really struggling with the illness. Now I'm happy to wake up in the morning and look forward to particular things that I'd like to do in my day.