In honor of Lyme Disease Awareness Month, we invited Native Max contributor and team member Rhonda Tree Mangan (Diné) to share her story of battling Lyme Disease.
Our family of five moved to Lawrence, Kansas in January of 2012 so I could pursue my bachelor’s degree at Haskell Indian Nations University and play one year of collegiate volleyball. Little did I know, the three-a-day workouts would not only help me earn a spot in the starting lineup but would also help me down the road for an unexpected fight for normalcy. In the fall of 2016, soon after turning the big 4-0, I was diagnosed with Lyme Disease.
My journey began the year we moved back to Denver, Colorado in June 2016. After a few months, I felt like my body was on the verge of getting the flu; aches, pains, fatigue, foggy-head. It stayed with me for months. I tried taking all sorts of over-the-counter medication to no avail. My husband Marc kept telling me to go in and get checked but I did not listen and assumed it would eventually go away. Unfortunately, I realized, this was one illness that was never going to go away.
I recall one evening sitting on the couch, my body aching, I asked Marc to rub my legs. He put very little pressure on me and I screamed out in pain. It was then, I was forced to make an appointment. I went to Denver Indian Health and Family Services where the nurse practitioner gave me the basic physical rundown and said I was in the best shape.
As the days went by the pain and fatigue got worse. I would cry myself to sleep only to dream about the pain wide awake in my body. I told myself, “it’s all in my head and I needed to be strong.” I tried hiding it from my children and husband until I couldn’t anymore. I was looking beat and battered.
Again, Marc forced me to go back in and see a doctor. This time, the nurse drew some blood and tried to put me on Tramadol, (a medication that treats moderate to severe pain but can be addicting) until the results came back. Knowing the effect that regular over-the-counter medication has on me (completely knocking me out) I declined.
Behind my bedroom door, I would crawl into a ball, see, feel, and hear nothing but pain. It felt like my tingly nerves were being electrocuted and in-turn would make me nauseous and give me headaches. I also began to notice my body parts weren’t moving around like they should. My legs were taking a second too long to register what my brain was telling them to do, causing me to look goofy and sometimes almost fall. I would have the longest cramps imaginable in my feet and calves. It was a snowball effect of negative feelings. I felt like I was falling into depression, living in my own hell, and ready to just call it quits. After barely getting through my work day, I would go home and go right to bed and continue my suffering.
I noticed, however, even though that stage of hell, I managed to drag myself to the gym. It was my heaven.
I noticed, however, even though that stage of hell, I managed to drag myself to the gym. It was my heaven. The weight lifting, yoga, and cardio classes became an addiction and it made me feel like my old self, taking away my pain, my fatigue, and my tired mind. I found that if I constantly kept physically moving, I would keep myself from the pain awaiting me when I stopped. I lost over 25 pounds between not eating, feeling nauseous, and working out. Standing at 5’11” and 155 pounds, I couldn’t afford to lose any weight but managed to drop down to 127 pounds.
When the results finally came back, the nurse said I had an autoimmune disease called Lupus and sent me to a specialist. The specialist did what specialists do and took more tubes of blood for more testing and suggested rheumatoid arthritis but called my diagnosis “Differentiated Disease”. She started me on steroids. Even though I was reluctant to start the medication, I went ahead with it. I found myself feeling agitated, and starving, but it never took away the pain. I immediately went off the medication and started experiencing side effects. The specialist, still unsure of my issues, decided to start me on Cymbalta, (treats depression, anxiety, chronic muscle or bone pain) which were all my symptoms, but Marc and I decided to search for other alternatives.
Marc is a personal trainer and knew a clinical nutritionist who also worked in functional medicine. We decided to go the natural way in fighting this disease. Andrea from In All Your Ways was very knowledgeable and very understanding having gone through a similar experience. Her approach was different and I finally felt like there was a light at the end of the tunnel. The journey started with an elimination diet. It entailed cutting out all non-processed foods, dairy, nuts, grains, nightshades (botanical family of plants that could cause inflammation), and gluten; basically the bare minimum. It was a rough 30 days, thankfully Marc did it with me for support. After the 30 days, I began to slowly add foods back. In the meantime, my body began the slow healing to recovery. I began to have more energy and my pain was a little more tolerable. Overall, I felt closer to my old self.
After a few months of adding foods back and getting back to a somewhat normal diet, my pain and fatigue returned. This time it seemed like it came back with a vengeance. The pain had not only returned to my limbs but now entered my lower back. My headaches increased to a constant throb and I would wake up throughout the night with a throbbing ear. I found myself back at Denver Indian Health, not wanting to return to the specialist for more guinea pig concoctions. The nurse practitioner took more blood and told me to continue my diet and exercise.
It was a Sunday afternoon in October of 2016 that I got a voice message from the nurse. Her voice seemed a little desperate and made me very nervous. As soon as my husband returned, we sat down and called her back. Again, she was a little hesitant which made us very nervous. She then told us the blood work came back and I had Lyme Disease. I had a mix of emotions; thankful we finally knew what we were battling, but lost because I had no idea what Lyme Disease was and if it was curable.
When we initially moved to Lawrence, no one told us about chiggers, cicadas, and most importantly, ticks. Our backyard was open nature and we either ran or walked our dogs as a family numerous times. It was there, we assume, that I received the tick bite which sealed my fate and our dog Jak who was put down the summer we moved back to Denver, suffering from symptoms likely associated with Lyme Disease.
We saw David Newton at Active Performance Chiropractic due to my headaches, and back pain. Thankful for David and his research, he explained why some of my issues were occurring. He said the disease could move from the body to the central nervous system and this was causing the headaches and my gradual decline of the brain like thinking, spelling, and remembering. We then made an appointment with Charlotte Ellenbogen who is a Doctor of Osteopathy with Western Infectious Disease in Broomfield, Colorado. Marc and I decided prior to going in that I wasn’t going to take a lot of chemical medication if that was suggested. Thankfully, she was very familiar with the disease and educated us. I was then put on a 30-day antibiotic called Amox-Clav, (penicillin that treats infections). I began to feel so much better with my pain decreasing and some energy returning. I was ready to be normal again.
The holidays came and went and my days were much better. Then out of the blue, the pain decided to come back. It was then that I realized this was never going to go away. The normal life that I once knew was going to have to be a different normal.
Today, I wake up with hopes I’ll have a good pain-free day or read somewhere someone has found a cure. Until then, most days are good and when I have bad days, they’re not so bad.
Today, I wake up with hopes I’ll have a good pain-free day or read somewhere someone has found a cure. Until then, most days are good and when I have bad days, they’re not so bad. I rank my pain 1-10 with 10 being the worst and most days have been 2-3 which is tolerable. Sometimes though, I have days of 4-6 which wears me out. I have to be conscious and pay close attention to my body. When it’s time to rest, I have to rest or it takes me a week or more to recover. I continue to watch my diet, splurging on occasion but knowing that if I eat something that doesn’t agree with me, my pain will return.
We are still trying to figure out the triggers, but overall the days of not knowing are over. I continue to educate myself and I am so thankful that my husband stood by my side the whole way through. I didn’t realize how much this has affected him. He was so stressed out and overwhelmed through the whole ordeal, but didn’t show it or voice it until things calmed down. We tried to keep things under wraps as much as possible from our children, but they are intelligent human beings and were aware. They also did their best to help keep life moving from school to activities to appointments.
I continue to share my story in hopes that someone who may be having the same frustrations in figuring out their journey and may not think of Lyme Disease.
I continue to share my story in hopes that someone who may be having the same frustrations in figuring out their journey and may not think of Lyme Disease. It is very common for people to acquire this disease. The problem is that it affects each individual differently and symptoms are similar to autoimmune diseases. There are many alternatives to helping with the pain, and I have yet to experience some of them. So far, I know I cannot see a massage therapist anymore as it brings out all of my symptoms full force. I have turned to Young Living Oils from diffusing to ingesting. It has helped me with my depression, pain, and fatigue. The oils are definitely a must in my everyday life. Overall, I have come to the conclusion that diet, regular exercise, and rest is the best alternative to keeping my pain and fatigue at bay. I am learning to live with my brain issues. I continue to battle mentally since having the disease.
I am thankful for all who helped me along this stressful journey, whether it was through their profession or personal advice. Reaching out for help was probably the best thing I could have done for myself. I am also thankful I not only prepared myself to battle my way for a starting position against 18-year-old collegiate athletes but prepared myself for a lifelong fight with Lyme Disease. I always tell myself, it could be worse.
Lawrence, Kansas left me a gift I could have lived without, but I wouldn’t have changed my journey moving there, experiencing Haskell Pride, March Madness and the community of people my family met and love.
