****Trigger Warning: Medical Photos attached****
Being from upstate New York, Yvette grew up enjoying the outdoors and on her family farm. She was always on the go and full of energy up until 2019 when she got bit by a tick. It was October 26, 2019, when Yvette found a tick in her hair; she removed it, not really thinking much of it.
Following the tick bite Yvette began developing symptoms that started with a rash in her arm pit. The doctor diagnosed the rash as yeast and wrote for ten days of Doxy. By Thanksgiving the symptoms started to become more frequent, and she experienced weak sensations in her legs which started to give out on her. This was the beginning stages of what would turn out to be a very progressive illness. Initially, the symptoms were sporadic and strange; they started as mild twitching in her face, feeling off balance, dizziness, burning and stabbing pain in feet and legs, specifically her shins. By March 2020 Yvette could not walk unassisted, her symptoms had progressed at a rapid pace and eventually left her mostly bed bound. She experienced extreme fatigue and developed major psychiatric issues.
The mental health changes that Yvette experienced had a profound impact on her personal relationships. She felt like her whole personality changed and she morphed into an entirely different human which resulted in some of her close relationships coming to an end. This was a painful experience for Yvette, but she has mixed feelings about it stating that “if someone could leave you at your lowest point in life, do they really love you?” She pointed out that she understands that her partner genuinely felt no longer loved or cared for but also expressed she was in survival mode and had no control over the changes happening in her body. This is an unfair battle that most Lyme/chronic illness warriors know all too well, the battle is ugly and when you have no control over what is happening to you, you have to surrender and accept what it is. Yvette shared that she would not apologize for being sick!
For Yvette, the months of April and May were spent in bed with very limited movement and no energy, she still hadn’t received treatment.
July 9, 2020 is when Yvette saw the first Lyme doctor who was in Pennsylvania. This particular doctor had a treatment plan for her that consisted of Azithromycin and Doxy which caused a terrible herx reaction and she felt like her body was on fire. She also had severe diarrhea for forty-seven days. Yvette realized quickly this wasn’t the right treatment and sought out another Lyme doctor who told her that he believes “Babesia drives the bus.” He switched her treatment to Mepron and Azithromycin. Despite knowing that Azithromycin is a great for treatment for Bartonella, Yvette failed to improve. Her symptoms worsened and she developed a stutter, tremors, slurred speech, and intense pain in her hips, legs, and shins. Additionally, Yvette struggled with stiff feet in the morning and stated it would sometimes take up to an hour to be able to get her body to a place where it was functional. Aside from the physical pain, Yvette experienced neurological and central nervous system issues as well that consisted of several visual disturbances (blurry vision/floaters), felt off balance and dizzy, and felt internal vibrations.
After researching, Yvette decided she wanted to consult with a highly regarded Lyme doctor in NY who is also a neurologist. This is the treatment path that she remains on at this time and has noticed steady improvement.
Yvette’s treatment consists of IV and oral medication (Azithromycin and Rifampin) and a few basic supplements.
She has not been diagnosed with Lyme Disease as all of her testing specific for Lyme has been negative, however, she has been diagnosed with: Babesia, Bartonella, EBV (Epstein-Barr Virus), CMV (cytomegalovirus), Parvovirus b19, HHV-6, Ehrlichia, Rickettsia all through send out testing confirmed by Mayo Clinic.
As most of us are familiar, treatment comes with a pretty steep price tag and from October 2019-December 2021 she has spent $27,000. Yvette tries to pay cash when she can but has been forced to use credit cards and money from her 401k to cover the cost of treatment. The average appointment costs around $1,000 as her medical condition is complex and she has to travel for care. Most of us are also familiar with the fact that most Lyme doctors do not accept insurance which remains the case for Yvette. Fortunately, New York passed legislation that states that insurance companies must pay for up to eighteen months of medication for the treatment of Lyme; the caveat being they do not have to pay for the doctor visits. This legislation also provides protection for doctors who treat Lyme Disease which should be the case for all practitioners. Governor Andrew Cuomo’s sister-in-law was diagnosed with Lyme Disease, thus how the legislation came to fruition. Despite this legislation, treatment remains unaffordable for the average patient.
Yvette noted that she believes that probiotics are one of the best investments you can make in your health, and you must protect your gut, currently she spends about $200/month on probiotics alone.
Unfortunately, Yvette had a setback after battling Coronavirus which put her in the hospital for two days and caused her to regress in her treatment progress. While hospitalized with CV, Yvette required high doses of IV steroids to battle the inflammation in her lungs. She states she is aware of the hesitancy people have about using steroids with Lyme/Co-infections but also believes they have a place in medical treatment when needed for a rescue drug and when used short-term. Without steroids, Yvette would have needed a ventilator to manage her CV symptoms, so she recognizes the importance of steroid use when necessary. She is still dealing with some lingering effects of the virus but feels things are trending upward at this point.
When asked if she had any closing thoughts or advice for other chronic illness patients, Yvette stated:
“Lyme makes you bitter and changes you as a person.”
“I believe I am totally responsible for my fight and must advocate for myself.”
“I don’t know if I will ever feel 100% but being better than before is a bonus.”
“This illness has changed my perspective; it is humbling because you get a wakeup call that shows you that you can have your health and personality taken from you and there is nothing you can do or say about it; you have to accept it and move on you cannot stay stuck in the past or dwell on negativity.”
In closing Yvette says you should find a good, knowledgeable Lyme doctor and invest in your care immediately. She also, wants you to know you should find peace in your life, handle your business, weed out negativity and drama and move on in a positive direction.
The information shared on this page is for informational purposes only, it is strictly opinion based on personal experience and should not be taken as medical advice. Always consult your medical provider for medical advice and before starting any new treatment.