Lyme Disease: A Personal Perspective

Introduction

The previous article, Lyme Disease: Often Misunderstood, introduced basic information about Lyme disease including how difficult it is to diagnose and treat.

Now we will focus on Amanda M Boyd RN and her personal experience with contracting Lyme disease, the struggle to get diagnosed, and living with Lyme disease.

Amanda's Story: Living With Lyme Disease

Could You Tell Us About Yourself?

I live in Indianapolis, Indiana where I was born and raised. I have five kids ranging in age from 14 to 22 years old. I have been a registered nurse for 13 years and have worked in health care for 23 years.

I currently work in the sales field with different organizations to help close gaps in funding for African American founders and entrepreneurs. I am also contracted with a couple of nonprofit organizations that are addressing health equity issues with black and brown individuals in the United States.

How Did You First Know You Were Sick?

I presented with an unknown illness in 2010, about three weeks after graduating nursing school. After lab work for a physical required by my job, I was immediately rushed to the hospital. I met Dr. Sumeet Bhatia, MD and was admitted for almost a month. The doctors thought I had cancer but I didn't - I did have a rare anemia. I wasn't diagnosed with Lyme disease until about 11 years later.

How Were You Finally Diagnosed With Lyme Disease?

I was diagnosed with Lyme disease in 2021 but it wasn't a smooth process. In 2010, I participated in a missions trip to the Dominican Republic. From 2010 to 2021 I was hospitalized more than 35 times with multiple symptoms, diagnoses, treatments, and different teams of doctors.

Dr. Bhatia, my primary care physician of twenty years, referred me to a new primary care physician, Erin Burns, DO who is a doctor of osteopathy (DO). She did her due diligence, listened, ran many tests, and diagnosed me with Lyme disease. I went from my primary care doctor of twenty years to a new one who I met once and finally had my diagnosis.

Did You Have Barriers to Diagnosis?

There is a misnomer that health care is equal across all races and socioeconomic classes. It isn't even equal between males and females. Lyme disease has a triple threat. Not diagnosed as often as it should be because of a lack of research, education, and understanding.

Before I became a nurse, I was a single mom with five kids, living in an area with a high poverty rate, which affects access to care. There are many stigmas to how women with color can be treated in health care. Looking back, I don't know how I made it through all those years. I got divorced in 2013, so much of this time I was a single mother of five kids. Now, as a nurse, people usually respect my training and give me the courtesy of listening to me.

There are many barriers to proper health care. Not only actual access to care, but also the need for practitioners who understand, listen with an empathetic ear, and are ready to collaborate with patients and other doctors if they don't know the diagnosis.

I have a collaborative team of doctors today that work together to ensure my healthcare goals are met. Dr Erin Burns is my primary care doctor, Dr Homer Schreckengost is my Lyme disease specialist, Dr. Maria Ermitano is my Allergy/Asthma specialist, and finally Dr Sumeet Bhatia, MD is my Hematology/Oncology doctor. This team makes my recovery possible. We spend countless hours each month working together to ensure I have as close to a normal life as possible. 

I still have active Lyme disease. I was diagnosed a year ago now, in October 2021. I feel much better, but I am living despite the disease. I am still dealing with the effects of being diagnosed late (these will be addressed later in the article).

Do You Have Barriers to Treatment?

Yes, getting treatments approved by health insurance is a barrier to proper treatment. Some of the prescribed treatments for Lyme disease are not covered by my insurance plan. I am prescribed $500 worth of supplements and a couple of compound medications that are not covered.

Many patients with Lyme disease take 15 - 25 supplements/day in order to provide things that are no longer being produced by the body due to damage caused by Lyme disease. At $500 per month, paying for Lyme disease treatment is a major financial expense.

What Else Contributed to the Late Diagnosis?

Doctors often default to using the bullseye rash to diagnose Lyme disease. Due to lighter skin tone, a Caucasian person is more likely to be diagnosed with Lyme disease earlier. Others are 57% more likely to be diagnosed late, past the treatment stage. It is more difficult to detect the bullseye if the skin is darker. Not everyone even gets the bullseye.

My bite site looked like a spider bite and doctors wrote "spider bite" in my medical records. It would blister, dry out, and open back up. I am lighter in color and redder in tone, making it harder to see welts or a bullseye rash. In addition, I have urticaria, which causes welts and hives.

I know my skin and how it feels. I would explain that the skin on my hip was inflamed, but this symptom wasn't used to move forward on my diagnosis.

What Complications Are There From Late Diagnosis?

By the time I was diagnosed, I had every symptom of chronic infection: brain fog, meningitis, overgrowth of yeast in my entire body, thyroid, kidney, and liver function impairment, stiff skeletal system, and chronic pain (hurt all of the time).

The number one problem is you deteriorate over time and don't really realize it is happening, especially your mental state. The swelling and inflammation affected my brain, making it hard to work. I haven't been a bedside nurse for the last three years. My inability to work consistently was due to my inability to mentally hold a job.

Vitamin deficiencies and organs not functioning properly compounded the problem. Doctors may see one symptom and focus on it instead of seeing the entire picture. There were times when I was bedridden due to this muscle or that problem but not recognized as Lyme disease.

How Are You Now?

Once I was diagnosed with Lyme disease and started treatment, many of these symptoms went away. I feel so much better now! I am not cured since a cure isn't possible when you are diagnosed in late stages, but I am doing much better. Not only I am physically and mentally stronger, but I am stronger in the area of advocacy, for myself and others.

Do You Have Advice for People Who Suspect They have Lyme Disease?

It is better to go to the doctor with an idea about your diagnosis than to show up and wait for them to tell you what you have. Yes, you go to the doctor for help, but you need to do your part, too. Keep a journal of symptoms and how you feel. Know what appointments you went to, what was said, and what was done. You will have documentation and evidence of symptoms and treatment. Eventually I had enough information to know what was going on. I was able to participate in discussions about possible treatments.

Be a student of your own body. Women often don't know their bodies as well as they should. Men don't know either. Know when something is wrong and catch it early. For example, cancer, which has many more research studies than Lyme disease, has shown that early diagnosis is imperative for a cure.

People have died of undiagnosed Lyme disease. Death may be due to lung, heart, or liver failure but was ultimately due to Lyme disease. More research and education can lead to treatments to prevent a disease that is totally curable, if it is diagnosed in time.

Why Do You Want To Tell Your Story?

I don't know that my story is different than others but everyone's experience has value. I might reach audiences that others might not. We need more people to talk about it so there will be more research.

I want to be a part of the solution. I have talked to mothers of children with Lyme disease. I would rather go through it myself than have children suffer. The children have brain fog, can't go to school, and have no energy to play outside. If we can prevent it, we should!

What Do You think Should be Done (Patient's Perspective)?

Education

First, advance the conversation. If you research Lyme disease, you will find information about what is known and how research needs to be done but no normal, everyday conversations. Even I, as a nurse, didn't know a lot about Lyme disease. I knew it came from a tick. I didn't know black people could get Lyme disease.

We need to raise the awareness in all groups. I constantly hear - what is that disease? Better education about Lyme disease will bring more research and more empathy to those who have the disease.

Lyme disease patients often feel isolated. Some people are afraid to associate with them because they are afraid they will catch Lyme disease. They also don't understand that how the patient can feel can vary from one day to the next. They may feel fine one day and not able to get out of bed the next. They can do their job one day and not the next. Lyme disease is a very unpredictable disease. It is challenging to plan your life or to feel like you have a life!

Diagnosis

We need to diagnose Lyme disease in the early stages so we can give proper treatment and prevent long-term damage. In order for people of color to be treated, we need everyone to better educated about it. Any person could potentially get Lyme disease and all would benefit from being diagnosed earlier and treated properly.

Early detection is increasing in some diseases, such as breast cancer, which is 100% curable if caught early. Awareness was increased, in part, by celebrities going public with their experiences. Now people are more likely to discuss breast cancer with friends and family. If cancer runs in family, you are more likely to have people around you to support you and encourage you to get checked.

It is important for doctors to collaborate and research instead of jump to conclusions about the diagnosis. There have been conversations about doctors needing to have more empathy, better bedside manners. and collaborative skills. We need doctors to go the extra mile. Healthcare is not a career where you can "just do your job." You are dealing with people's lives. Our nurses could play a larger role because they are educators at heart. If we had them sharing their knowledge in the community, there would be more focus on prevention.

What is Next?

In the next article, we will discuss the future of diagnosis, treatment, and research of Lyme disease.