Olivia’s Story: Walkers, Pain and Lyme

Lifetime of doctors visits

Olivia has always been a special person. She has dealt with different medical challenges from the time she was a little kid. Asthma was the normal kid challenge but she had unique challenges too. She has a long list of food allergies which really makes meals a challenge. She was born with a metabolic error that made processing B12 impossible. Olivia has two rare diseases diagnosed in childhood, one of which caused her to become legally blind. In other words, Liv was used to going to doctors and dealing with new symptoms and challenges.

Olivia needed two surgeries when she was 20. She had her wisdom teeth removed and a cornea transplant in a very short period of time. She had to take six weeks away from a job that she loved as a day care worker to recover from the cornea surgery. Things seemed to go well after the surgery. Allergy season was during that time and she was taking Benadryl for her allergies. She started to feel woozy but chalked that up to the Benadryl. The woozy feeling lasted and worsened. Within a few days, she was unable to stand up. Olivia was known in her family as being a bit of a drama queen. At first no one believed that she couldn’t stand up but they soon knew something was very wrong.

Guillian-Barre

https://www.healthline.com/health/guillain-barre-syndrome

Her mom took her to her doctor but she had no clue what was going on. Maybe she was just really wiped out? She suggested a visit to a neurologist. Olivia really wanted to figure it all out and get better. Her six weeks off from work was coming to an end. Her boss wanted to her back at work. She couldn’t go back to work when she couldn’t walk. She really wanted to get back to work and take her life off pause.

By the time she got to the neurologist, her face was droopy and numb. The visit was strange; he ran different tests than she had before. She was told that she had Guillain-Barre syndrome. The doctor wasn’t exactly sure why but suspected that it was from the stress of her two recent surgeries. The doctor set up a nurse to go to her house for a week for treatments that would help.

Needing a walker. Living with pain.

It was the lowest point of Olivia’s life. Everyone in her world was concerned about her. She’d be out with her walker and get strange looks that said “why does this young girl have a walker?” Her entire family was concerned and supportive. Her brother would hear her fall during the night when she would try to get to the bathroom. He would get up to help then take her back to bed, even on nights he had to wake up early for work. Her mom would help her wash her hair and shower. She spent her time apologizing for all the things she couldn’t do. “I’m fine.” “I’m sorry.” Her mom reassured her “Sweetie, I’d do this over and over again. It’ll be okay.” But nothing was okay.

Using the walker was helpful but frustrating. Olivia started going to PT and OT to move better. She did get a little stronger. She didn’t need to use the walker all the time. As she got stronger and was able to move more she began to get nerve pain. She had never felt pain that intense before. She would wake up screaming in the night. The pain was absolutely unbearable. She was in the emergency room for pain three times in just three weeks. The hospital had a pain management lady come and ask simply “you want some oxy?” it was that simple. The oxy didn’t really help the pain. It took the edge off but that was it. Olivia wound up having mood swings and an upset stomach. She became mouthy, mean.

Olivia had been going to OT and PT for months with minimal result. They suggested she could try going to the Chung Institute. They told her it would be good but different. With everything going on and dealing with such intense pain, it was time to try different.

The Chung Institute https://www.chunginstitute.com/new-patient-documents/

The first time Olivia went to the Chung Institute, she was the most miserable cynic. She met Dr. Brobyn and her team in February after her 21st birthday. Olivia walked in that day with no walker. She was sure of a few things one being that she couldn’t have Lyme disease since she was definitely not a nature girl. Olivia knew that she had already been at her worst.

Lyme

Dr. Brobyn tested her for everything on her cart and tested all the medicines she was currently on. Then Dr. Brobyn told her that she had Lyme disease. Olivia stopped listening very closely and just tried to hold her emotions in check. Then she heard that her body didn’t “like oxycodone” and that she needed to get off of it. That wasn’t a bad thing to hear. She didn’t like being on it but how would she manage the pain? She waited for Dr. Brobyn to finish and the staff to leave, and then she cried her eyes out like she had been told she had a terminal disease. Most people would be happy to finally have a diagnosis, but this was not the answer Liv wanted. It sounded terrifying.

You see, she felt that all the other things she had coped with before affected just her. Olivia was the one who couldn’t see or drive and needed eye surgery. She couldn’t eat what everyone else could. Only she would need an inhaler. Lyme affected Olivia’s entire family-everyone around her because it made her more dependent. She didn’t want anyone to see her if they couldn’t look at her without making the “Oh, I’m so sorry for you” face.

Treatments

She started taking an herbal remedy called Quintessence. Within a few days she was back to walking with a walker and felt sicker than she ever had previously. She had what is called a Herxheimer reaction-a temporary exacerbation of symptoms that can sometimes occur with treatment for Lyme disease. She had no idea what it was and called Dr. B who saw her right away. She went to her second visit using a walker. Dr. B explained what was going on. Olivia began low dose immunotherapy (LDI) and ozone therapy and continued treatments. Olivia knew Dr. Brobyn was a special person early on in her treatments. She took the time to listen; really listen. Dr. Brobyn would explain things and seemed to really understand. She was both a good doctor and a good person. This was something in Olivia’s experience that doesn’t always go hand in hand.

Click the links for more information about treatments

Disney

In just a few months, Olivia was dramatically improved. She was stronger and in less pain. In just five months, she was no longer taking oxycodone. Olivia was able to start working part time again in October. This past winter, she traveled to Disney to hang out with a friend who works there as a Disney princess. She was able to walk all over Disney-no fatigue, no pain, just a normal twenty two year old enjoying the Magic Kingdom. None of her friends or family; not even Olivia would have thought that possible just the year before.

Olivia is working part time 5-6 days a week now and is pain free. She still has some peripheral numbness and fatigue but Olivia pushes through it. She continues her visits and treatments at the Chung Institute and is looking forward to a healthy happy future.