Help Tricia Beat Lyme

Seven years ago, my daughter began the quest for diagnosis as her body seemed to fall apart in front of us. She finally received the answers she needed but it’s been an uphill battle, one with many victories along the way, but challenging. Her husband Ben shared this with me from a center in AZ, where she is currently receiving treatments in the hope of reboosting her immune system. Any support you can share with them- be financial, emotional, anything at all, would be so welcomed by them as they continue onward 

Tricia has been battling Lyme disease for the last seven years. These last seven years have been a series of ups and downs and quite the roller coaster ride. In 2014, I was deployed to Africa supporting the SEAL Teams, and I came home to a very sick wife searching for a diagnosis. She saw 15 different specialists before being diagnosed with Lyme disease. Her symptoms ranged everywhere from the shakes to severe insomnia as well as GI issues and ovarian cysts. Her body seemed to be breaking down in front of us yet the symptoms were so different that none seemed to be connected. After working with a Lyme literate doctor, Tricia was on track and slowly making progress until the fall of 2018 when she took a significant nosedive. I had gone from seeing a sick wife progress during treatment, many various roadblocks along the way, to building a successful real estate career. One that she was so driven for that she won the award of 40 under 40, selling 27 homes her first year alone, who then became totally and completely flattened. I’ll refrain from including the photos here but overnight she developed cold sores all over her face (viral activation), was unable to drive, sleep, and was so dizzy that even watching tv was difficult because her eyes couldn't seem to catch up. She became sensitive to sound and the slightest noises would set her off. With the help of a Lyme doctor, we were able to get her on a good protocol that stabilized her but was quite rough. I remember days where she was in so much pain that she told me she didn’t realize it was possible for even her fingers to hurt or days where I would literally have to pick her up from the floor in pain. Days where she could barely get out of bed because she was so fatigued. There were mornings where I’d have a work meeting and she was so sleep deprived she didn’t even know how she’d get it together to get the kids to school after being awake all night. Frequent moments when I look at her, talk to her and realize she’s blankly looking at me because she's so brain fogged she can't fully comprehend what I’m saying. Nights where she tossed and turned all night sweating despite the cold and trying to catch her breath because of Babesiosis, one of the coinfections Lyme brings. Once she began to have panic attacks on the freeway because she was struggling with vertigo, we knew side roads were going to be her only option. It was heart-wrenching for her to give up the career she loved, after all, real estate agents need to be able to drive. Her self-confidence has been shaken, relationships have changed, and we've had to take one day at a time unsure of what the next will bring and when she will pull into or out of a flare.

 

My intention for sharing this is not to incite sympathy, but rather to make people aware of the journey we’ve been on and understand the need we have to put this Lyme nightmare behind us and move forward as a family. Our kids desperately need to get the mom back that they deserve and I would like my wife back.

 

Lyme is an invisible illness. Perhaps even more so for my wife who epitomizes grit, and continues to put one foot in front of the other all while smiling and staying positive for her family. I want to say she has lived in almost a sense of denial because she so desperately doesn’t want others to know how she truly feels or for the kids to see her sick. She has shared only bits of her journey on social media, nowhere near the extent of it because she doesn’t want to talk much about it or have others look at her as though she is incapable in any way, where she is actually the opposite. Tricia has medical PTSD and struggles to even go in for a lab draw. She doesn’t want sympathy or to appear weak, to the point in which she had an emotional meltdown when she learned that she had no choice but to get a PICC line installed for IV infusions because her veins have collapsed and are virtually impossible to access. The PICC line was inserted this week and goes from her right bicep to the area just above the right ventricle. She can no longer hide in plain sight that she now has a medical device attached to undergo treatment and to her, it is a constant reminder she literally carries with her that she has an illness. In the IV rooms, she prefers a private room or not to talk to other patients because she wants, with every single ounce of her being, to exit the world of chronic illness. It’s now showing a bit on the exterior as well. Her extremities are so puffy and inflamed that she can’t remember the last time she was able to put on her wedding rings.

 

If you know my wife you know how strong-willed she is. She doesn’t take no for an answer and I hate to admit that she wins every argument. There is no doubt in my mind that she’s going to find her way out of this. The issue we are confronted with right now is that we are tapped out financially. The CDC has only within the last few years recognized that chronic Lyme exists yet it is such a convoluted illness that each patient must treat it differently and insurance hasn’t covered the doctors (who’ve risked their own medical licenses to help their patients). Tricia’s done everything from surgeries to an upcoming procedure where she has to remove a root canal since the teeth and mouth heavily harbor Lyme bacteria. Her rainbows are the close friends she’s made who have been through hell and back- the same places she’s been- but are now in remission, helping to encourage her and fill her with the hope that there is a way out of this. Outsiders will find her smiling even on her hardest days. She often says that if she didn’t have this positive outlook she wouldn’t be here today.

 

We finally decided that the best course of action would be an intensive outpatient treatment center. So, we are currently in Arizona where she is undergoing daily IV infusions. To say this is overwhelming is an understatement but we know that there is only one way out of this and that is to rebuild her immune system. The antibiotics she’s been on have done well to manage her symptoms but are also damaging to her and she can’t be on them for much longer. She’s made strides and cherishes every positive treatment and the good days she has but we are well aware that we still have a journey ahead.

 

I'd like to have my wife back but more importantly, Camille, Carolina, and Gabriella deserve happy childhood memories with their mom. We know this is within reach and it's time to get her well and put this behind this.

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Insurance does not cover Lyme treatment and for the last seven years they have been paying for all of her doctors, treatments, and IVs out of pocket. Tricia's been unable to work and they still have a journey ahead to get her healthy.


-Patsy