Kate H. from Colorado
How long do you believe you have had Lyme/tick-borne illness?
Probably since my teens. I grew up in Wisconsin. I have had vague symptoms since around 13 (i.e. hypothyroid, knee problems, muscle pain, GI issues).
How long did it take you to get a diagnosis?
Although I had vague symptoms for years, I didn’t get really sick until 2007 when I got the “summer flu”. From there, I went downhill quickly and by 2008, thought I was truly losing it. It would take another 2 years until I saw a LLMD and was diagnosed.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Yes! D.O.’s, M.D.’s, cardiologists, internal medicine docs, GI docs, acupuncturists, chiropractors, multiple ER docs and so on ad infinitum.
Were you diagnosed with anything else before Lyme? If so, what?
Yes. Anxiety, H. Pylori, Mono, Fibromyalgia, potential adrenal tumor, dysautomnia
Anything else you would like to share about trying to find a diagnosis:
Never give up on advocating for yourself and fire any doctor who tells you there is nothing wrong. You know your body best and every provider has limitations- after all, they are human too. They are working from their own paradigm and Lyme is a moving target that few doctors are willing to try to pinpoint.
How long have you been treating Lyme for?
I hate to say it, but I have been treating on and off since 2010.
Do you have any coinfections? If so, which ones?
Yes. Anaplasmosis was positive on my Igenex test. As for others, I haven’t been positive for any but suspect that I have them. I have had high viral titers and was recently diagnosed with SIBO.
What types of treatments have you tried?
Pharma antibiotics, herbs, homeopathic medicines, diet, supplements, sauna, acupuncture, chiropractic, energy work- you name it, I’ve probably tried it. I seem to do best with diet/supplementation and herbal treatments and that is what I have been focusing on for the past several months after I took a year or more off from treatment.
List up to 5 of your biggest (past or current) symptoms:
Pain - this and GI issues are my main symptoms these days. I have a lot of pain in the rib cage/torso area
GI issues- SIBO
Fatigue (less common now)
Anxiety (past, mostly)
What is the biggest way that Lyme has affected your life?
As hard as Lyme has been for me, I am grateful for it in a weird way. It has taught me to be more assertive, self sufficient and focused on what is important in my life. I have met some very strong and supportive people in the Lyme community and found my own strength through these very private struggles. As the saying goes, “you don’t ‘get’ Lyme until you get Lyme”. It’s sad, but it’s true.
What do you wish people knew about Lyme Disease?
That they knew the suffering that thousands of people go through every day. That even though you may not be able to see their pain, they are sick and need support. Have some empathy and stop putting your paycheck before the person.
Any advice for someone newly diagnosed with Lyme?
Find a good LLMD and then continue to do the work to regain your health. A doctor can only do so much. Lyme is a very DIY illness and you have to be committed to changing your diet and lifestyle in some very inconvenient ways to get better. It’s a slow process and its ok to take breaks. As my old LLMD said: “Lyme is a marathon, not a sprint.” If you get better quickly, that’s great but don’t give up, even if it takes years. If you find yourself at a plateau, it’s ok to get another opinion or switch doctors. I’ve found that the best way to work is to assemble a good team of practitioners who are willing to listen to you and others professionals.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
I love cooking, collecting cookbooks, reading, listening to music, art and writing. I also love to get outdoors in the lovely Rocky Mountains with my family.