Treatment for Late Stage Lyme Disease.

UPDATE:

Hi everyone, first, I want to thank you all for reading this and thank you for your support back in October & November last year.

Here’s an update:

Over the past 8 months, I've slowly been getting my brain function back and strengthening my body. My symptoms vary from day to day, but generally, I have greater clarity, less brain fog, and a better ability to communicate

I'm working to strengthen my body in preparation for more in depth treatment which will be effective in treating Lyme and related co-infections in my organs via IV antibiotic treatment. It is going to be incredibly difficult and painful but has proven effective for countless people.

Also. Here are a few links to research Chronic Lyme and inform others about this complex and misunderstood disease. Unfortunately, a look at mainstream websites such as the CDC, NIH, and Mayo clinic paints a misleading picture of Lyme . Here are a list of documentaries and other credible resources that explain the complexity and controversy surrounding Chronic Lyme Disease.

https://www.ilads.org/research-literature/controversies-challenges/

1. The Quiet Epidemic documentary and website.

- https://www.youtube.com/watch?v=I4C71N290co

2. I'm not Crazy, I'm Sick (Amazon Prime Video or Apple TV)

3. Under Our Skin (Free online)

4. The Monster Inside Me (online streaming)

Original Posting:

This is the hardest and most humbling thing for me to do. For starters, I have no idea what kind of details one should share on a Go Fund Me for an illness. It seems anathema (to me at least) to inform you of all the gory details of having Lyme disease. But, everyone has told me to be as sincere and honest as possible with what's going on, and what I've been going through.

My Story:

I grew up in Southwestern PA near Pittsburgh. I was always pretty determined, resilient, brave and adventurous. I had 10 years of waitressing under my belt on Pittsburgh's Southside that taught me a work ethic, community, and brought me to work with some of the best people on the planet. I went back to college as an adult to finish my degree in History. I traveled a lot. Became an Ashtanga yoga teacher. Puerto Rico became my home as I moved to Mayaguez and taught English Literature at the University of Puerto Rico. I slept outside. Hugged trees. I got Zikka in Puerto Rico. I got Covid in NYC. I got Lyme in Pa.

2020

I moved to NYC to transfer my research to the City College of New York (CUNY). Covid hit the city hard. And it lingered in a way that I had an especially difficult time getting over. I could go on with 2 years of stories from doctor appointments, my legs giving out, and falling in the middle of the streets. I knew I was very sick in a way I'd never experienced before. I didn't know how to proceed, so I kept up with band-aid remedies. I wanted to hide away in a dark closet, and it was difficult to be around people.

2021

The first doctor suggested that I had Lyme disease which was making my response to Covid much harder to get over. If you know as little about Lyme as I did, it isn't too serious when you catch it early and treat it with weeks/months of antibiotics. If Lyme is caught early it can be treated with little effect. If it is missed, or lingers on....it is relentless. It causes multisystemic dysfunction.

In May of 2022, I finally saw a Lyme literate doctor and was diagnosed : Late stage neurological Lyme disease. The physician informed my mother I am feeling things times ten the average person because my nervous system has become so directly impacted. That has been a lot to process, as I wish I could have started treatment earlier. I got a second confirmation of this diagnosis from renowned TCM MD Lyme specialist Dr. Ying Zhang.

By now, I have a lot less shame around being sick. And I feel fortunate to have an accurate diagnosis and not expend so much energy frustrated with trying to prove this illness.

The scariest part for me is the way Lyme has affected my heart function and how my heartbeat feels like it can just stop any moment. Some days I can't sit up very long, stand, or walk. Lying down is the most I can maintain most of the day. I had no idea your body could sustain these levels of pain and not shut down after so long. The stress on my organs is causing further damage--it affects my joints, muscles, brain, blood vessels, breathing, nerves, and digestive system.

I have days when I can't speak, or express anything... as if my body has no energy to vocalize. This summer, I began having seizures, which is terrifying. I honestly would have published this sooner, but I have not been capable of that.

Unfortunately—Insurance will not cover late stage Lyme treatments or doctor visits. This is why so many patients die or are dehabilitated for life as Lyme is a notoriously expensive illness to treat the longer it advances.

I have tried every possible resource, engaged in teary arguments, looked into every possible social service. I would not be asking for help if I didn't desperately need this critical medical treatment. I'm asking for help to follow through on this treatment and to have a chance of beating this. I’ll be writing a blog or writing project about this as soon as I am able to keep this page updated. For now, having a safe and secure place, and access to transportation where I can begin the first phase of treatment where all 3 of my doctors are, is a priority.

Treatment costs Include

A) Meeting with Lyme Literate doctors every month.

B) Antibiotics and an intense herbal tincture protocol 3-4 times a day.

C) Repairing damaged organs, and rebuilding my immune system.

D) Transportation to and from the medical appointments

E) Detox therapies like IV infusions, and therapies etc to keep exit pathways open during treatment.

Typical treatment for a Chronic Late stage Lyme patient ranges from 100,000-150,000 per person, at a minimum. Many individuals pay much more, some over $250,000. Honestly it is unknown how much treatment will need to achive active remission. But here’s to trying. I don’t know how I can repay everyone’s generosity, but I will.

One day at a time.

”Do not go gently in that dark night. Rage rage against the dying of the light”

Thank you for reading.

Big Love,

Meredith