A lot of Lyme patients are misdiagnosed before getting a correct Chronic Lyme Disease diagnosis. I am one of those patients. My journey to Lyme is long, but it's worth it to say that I'm getting better. I went through seven doctors to officially be diagnosed with Chronic Lyme Disease. You'll find that when it comes to Lyme, you need to be your own advocate and follow your gut, no matter what traditional doctors tell you.
First, I noticed minor pain in my hips when running, and sometimes my knees. Then a callus developed on my foot and I went to a foot doctor (podiatrist) to get it checked out. He said I was fine and just recommended orthotics, or insoles for my shoes, since I have flat feet.
I wasn't convinced that orthotics were the end-all be-all, so I went to my primary doctor. I didn't have hand pain but had some foot pain because of the callus. His MA (medical assistant) asked me to stretch out my hands and asked if they had any pain, which they didn't and they looked normal. After a physical exam, my doctor took some blood tests and called me a couple weeks later to tell me that I had RA, or Rheumatoid Arthritis. I didn't know how or why, but it just didn't make sense to me. I was an athlete all my life and a health food aficionado. So he referred me to a rheumatologist to get treatment and answers.
The rheumatologist prescribed Plaquenil (hydroxychloroquine), an antiparasitic and immunosuppressant, to combat inflammation. This didn't help, so next he prescribed Prednisone (a steroid) to suppresses the immune system. Ideally, both drugs should help RA, because RA is when your immune system attacks your body and causes inflammation. So the immunosuppressants should, in theory, suppress the immune system and take away inflammation. The Prednisone made my inflammation worse, so then he prescribed Methotrexate, a chemotherapy drug that would knock my immune system off its feet. Once I learned the side effects of losing your hair, feeling constantly sick and nauseous, and having no energy, I wasn't ready. So I searched for other answers and let the Methotrexate sit in my drawer.
I wanted a second opinion from another rheumatologist. This doctor was at a prestigious health center known for their research and innovation, so I felt confident in getting answers. I told my new doctor that I had other symptoms that RA couldn't account for, like heart palpitations, nausea, confusion/memory loss, facial twitching, ear ringing, severe vertigo, anxiety and depression. She insisted that it was RA and didn't entertain my other symptoms. She said I should be on Methotrexate, and if not, then a biologic like Humira, that would also hinder my immune system. I felt like I wasn't being listened to for the fourth time, so in immense pain and confusion, I searched on.
This doctor has been saving lives and trailblazing through the medical field as a D.O. for longer than I have been alive. His open mind and compassionate nature really encouraged me to think outside the box and visit with a naturopathic doctor, who believes in a holistic approach to medicine. Because he was on my side all along, observed my unexplained symptoms and had a gut feeling to keep searching, I credit this doctor for saving my life.
My sixth doctor is a naturopathic doctor who believes in a holistic approach. She administered a thorough physical and mental examination, and found that my major organs were shutting down. This doctor changed my life because she found something attacking my body that would change my life forever: Borrelia. Borrelia is the bacteria that causes Lyme disease. My brain, large intestine, small intestine, joints, muscles, lungs, thyroid, endocrine system, lymphatic system and heart were the most affected, in addition to severe anxiety and depression. She prescribed a treatment plan of 98 supplements (prescriptions, vitamins, drinks and drops) three times a day and a very strict diet, both for several months.
When my homeopathic treatment was finally done, I wasn't feeling too great. Disappointed and exhausted, I researched Borrelia online and found that my long list of symptoms aligned with Chronic Lyme Disease. I decided that I needed to see a Lyme specialist, which is a M.D. or D.O. specializing in Lyme disease. I found the ILADS physician referral and made an appointment with a Lyme specialist/M.D. in my area. I booked an appointment and when I saw her, I felt like everything became clear and I finally had answers. I can't be more thankful for her and everything she has done to treat my Lyme. Treating Chronic Lyme Disease can take months for some and years for others, and it's an upwards rollercoaster. There are highs and lows throughout treatment, so you need a good Lyme specialist on your side. Then, the trajectory will point upwards, and you will ultimately get better, despite the highs and lows. I'm living proof.