Jaime G. from Massachusetts
Updated: May 11, 2020
Do you remember being bitten by a tick? If so, do you recall where?
How long did it take you to get a diagnosis?
I had symptoms for 10+ years before the diagnosis.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I saw 27 doctors before the 28th doctor ran a Western Blot test that came back CDC-positive for Lyme in 2016. Between 2006 and 2016, I saw various primary care providers, endocrinologists, ear/nose/throat doctors, allergists, dentists, physical therapists, a dermatologist, an orthopedic surgeon, anesthesiologists/pain doctors, chiropractors, an ophthalmologist, oral surgeons, a neuro-ophthalmologist, neurologists - the list goes on.
Anything else you would like to share about trying to find a diagnosis?
It was like searching for a needle in a haystack. I knew something was wrong with my body. All of my symptoms started at the same time but no one seemed to be listening to me or taking me seriously. They all wanted to attribute my pain and illness to depression/anxiety, stress, fatigue, hormones, or migraines - even though I had none of these issues prior to 2006. They wanted to put a quick label on something and call it a day, but each diagnosis they gave me did not add up to what I felt in my body.
I literally saw the worst of humanity and medicine through this process. I saw doctors who were fatigued and desensitized and did not have the capacity, desire, or knowledge to really help me find an answer to the root cause - some of them were top doctors in Boston who are renowned for their abilities. This left me feeling helpless, hopeless, drained, angry, and fearful. I knew that - until we got to the root cause of my symptoms - I would not get well.
Even after I came back CDC-positive for Lyme Disease, it was an uphill battle to get some physicians to take my diagnosis seriously. It has been incredibly frustrating to have to fight for doctors to take you seriously and help you - no one should EVER have to deal with that.
How long have you been treating Lyme for and what treatments have you tried?
I have been treating Lyme since August 2016. I did oral antibiotics for 11 months and then pulsed on/off for several more over the next year. I did Biofeedback for 6 months. I have been on lots of supplements and done lots of Vitamin C IVs and alpha-lipoic acid IVs. I have used an infrared sauna. Last summer, I did IV antibiotics for several months along with acupuncture and vestibular rehabilitation. After that, my body - which seemed inflamed in every way possible - finally quieted enough to where I could actually hear my body tell me what was causing what and what my remaining symptoms were coming from.
List up to 5 of your biggest (past or current) symptoms:
Severe light sensitivity
^These symptoms are all from corneal neuropathy - 70% nerve damage to both eyes.
Fatigue (from Epstein-Barr Virus)
What (if anything) has made the biggest difference for you so far?
I found a doctor who allowed me to be a partner in my care. I needed to be able to communicate to the medical professionals not just a list of symptoms - but what was causing what and what was triggering what. When I finally got to a point where I could do this, it allowed me to figure out I had significant nerve damage to my corneas which was triggering most of my other symptoms. Having a concrete test (in-vivo confocal microscopy) to determine the damage to my eyes was a game-changer.
What is the biggest way that Lyme has affected your life?
It has impacted my life in every way imaginable. I need special accommodations to be able to work. It has limited my social life and dating life. Because of the extensive nerve damage, I have to wear dark sunglasses 24/7, even at night - and have to limit my exposure to daylight even on a cloudy or overcast day.
I have learned who my real friends are, who really loves me and cares about me, and who was just around for the good times. I have learned a lot about life and about what it means, what truly matters, and that if you don’t have your health, you have nothing.
It has made me more compassionate, more empathetic, more knowledgeable. I had to fight for so long to get answers, I have learned a lot about myself, my strength, my vulnerabilities and what I have to offer to this world. This disease has torn me down to the lowest low and I had to build myself back up again one piece at a time. It’s still a work in progress. My mom has always told me, “you have to believe” - that I have to believe there will be healing and peace from all of this and I pray everyday that there will be for all of us in this community who have suffered so needlessly.
What do you wish people knew about Lyme Disease?
I wish more doctors (all would be good) were educated about the true facts surrounding Lyme Disease in 2020. Most of them are operating under old medical guidelines from the 1970s that Lyme and TBD is hard to get and easy to treat. In reality, it is the complete opposite. I never saw a tick, never saw a bite, never had a rash. Yet, I had CLASSIC late-state neuro-Lyme symptoms for years that were missed over and over again by doctors and specialists. What happened to me and countless others should NEVER happen in medicine in 2020.
I also know that there is no way for others who have not dealt with a health crisis to truly understand what it is like - and I acknowledge that. But I keep sharing my story in hopes that it will touch something in them that will allow them to even for a split second live the horror that I have. The more people who have empathy and understanding for those who are sick and battling health problems, the better our world will be.
Any advice for someone newly diagnosed with Lyme?
Learn as much as you absolutely can about the disease. Immerse yourself in articles and research and become an expert on your own condition. Do not settle for answers or ideas from doctors that you are not comfortable with or if you do not agree that their ideas are best for you. You know your own body better than anyone - try to be still enough to listen to what it is trying to tell you.
Also surround yourself with those who love you most and who believe you and want to support you. You will find out who your true friends are. Relationships, friendships - may not last through this - but ultimately if they could not be there for you during this, you are better off without them as painful as it may be.
If people in your life disagree with how you are choosing to treat your Lyme, stay strong and go with your gut. You know what’s working for your body and what isn’t. And this disease is not for the faint of heart - when door after door closes on you and treatment after treatment fails on you - keep going. No matter what, keep going and keep fighting for the truth and answers and healing.
Fun fact time! What is your favorite thing to do in your free time?
I like to spend time with my family and my dog - the very simple pleasures of life!
You may find more about Jaime’s story on her Instagram profile: @jaimegaudet.