There’s an article in lymedisease.org by Wisconsin Watch who interviewed 5 women with chronic Lyme. it’s a long article and while I don’t necessarily disagree with them, I do think their view of costly alternative treatments is a little skewed.

https://www.lymedisease.org/chronic-lyme-patients-wisconsin/

The article overall does a great job of explaining how Lyme is overlooked by mainstream medicine and how hard it is to find not only the right diagnosis but also the right treatment protocol.

Lyme is a hard disease – it’s not just Lyme, it’s different for every person, and different treatments work for different people. Finding what works for you may take time.

For me, it’s been numerous treatments over the course of 8 years. And I’m not well yet. Some things I’ve tried have only partially helped – some haven’t helped at all.

But I know this, God isn’t done with me. He continues to open doors to resources and treatments I never knew existed. So I will keep pushing forward knowing that tomorrow may be a better day.

Below are some of the quotes from the article that resonate with me. If these hit home with you, reach out to me.

“If someone is having physical symptoms and isn’t feeling listened to, then they’ll have mental health repercussions and then that will impact their physical well-being,”

“relentless waves of rheumatologic, cardiac and neurological symptoms have flattened their lives”

“This causes pain of a magnitude that makes you want to die”…The pain metastasized quickly. She felt joint pain, headaches, insomnia and extreme fatigue. “It was so bad that I just wanted to be in a dark room with no smell, no sound, no light. Your body has succumbed to this,”

“I just want people to understand that Lyme is real. It’s not in our head. I want doctors to understand. I told doctors about my brain fog. My regular doctor wouldn’t even believe me.”

“It’s a nuisance when you’re in the middle of (driving), and you can’t feel the pedals that well,”

I didn’t drive much for years because of this! It’s pretty frustrating.

“Not everything is Lyme, but everything can be (Lyme),” she said. “It’s a weird thing, but you got to go down these rabbit holes.”

“So basically, it’s been a timeline of two years of not being taken seriously, just pushed away — either told I can’t do anything for you (or) there’s nothing really wrong with you.”

“You’re just surrounded by this dark (mental) fog, and you just don’t know how to navigate your way through,”

Sometimes, patients with waning and waxing symptoms are labeled as malingerers who are faking symptoms to get attention. “This is very common with people with Lyme,”

“We call it a ‘do it yourself disease’ because you have to be an active participant in your own healing,” she says. “I attribute my health today to doctors who were willing to work outside the box.”

So true. You CANNOT rely on someone else, even your doctor, to figure out what works best for you.

“We spend tons and tons of money on treatments. There are things my family can’t do because of all the money we have to spend to treat the Lyme,”

We are on our way to Florida to get treatment for my neck – this is our vacation, medical appointments. So we make the most out of it.

being a chronic Lyme patient is “like a full-time job,”

“It’s really easy to go down the road of ‘poor me,’ but it is possible to get better. There is hope. You can reach remission.”

This is the most important part of healing. My motto is: it’s ok to have a pity party, just don’t unpack and live there.