Help Emily reach the healing finish line

I’m organizing this fundraiser for my friends Emily and Aaron. Emily has been struggling with chronic Lyme Disease for eight years and Aaron has been her primary caretaker. Emily has been preparing to begin a therapy that will cure her, but she had to stop working this year and their resources have been pushed to the breaking point. They need help reaching the point where Emily can start bee venom therapy, so she can finally heal and they can get their lives back.

I asked Emily for some background about their situation, and she sent the following summary. Please consider helping them if you are able.

— dk

HOW IT STARTED

Oh gosh… I’ll try to keep this brief, although I’ve been sick for eight years now and it’s kind of a saga.

This whole thing started with a tick bite I got in August 2015. Within 24 hours of removing the tick, I had a nasty rash around the bite, severe muscle spasms, wicked joint pain, and fatigue that was so bad I couldn’t even watch TV – I just stared out the window like a zombie.

My primary care doc took one look at the rash and put me on doxycycline. I figured that would be that. I had found the bite early, treated it early, and was in what I considered to be tip-top shape, logging dozens of cycling miles a week and eating all the things your doctor says you should eat. In cases like this, I had heard, two weeks of doxy is all it takes to get you back to normal.

The antibiotics did help. Some. Over the next few weeks, the zombie feeling lifted and my knee pain eased up. I expected I would continue feeling better and better as the weeks went on, which is what usually happens with any illness.

Except this time, I never got back to normal.

My symptoms persisted beyond the antibiotics and in the months that went on. Mostly fatigue, brain fog, and the need for a daily nap. But weirder things popped up, too, like creepy electrical sensations under my skin.

Still, I’m an optimist, and every morning I would wake up and expect that this would be the day that things would turn around. This would be the day I didn’t feel exhausted. Wouldn’t need a nap.

You’d be surprised if I told you how long that went on before I accepted the reality: I’m really sick.

HOW IT'S GOING

Years have gone on since then, and instead of getting better, my functionality has decreased. It’s been a slow decline, so gradual that it’s imperceptible from one day to the next. But if you compare one year to the last, the difference is alarming.

At this point, I spend a long chunk of my day in bed, and every moment I spend standing comes with a cost. My brain fog has gotten worse, and sometimes I feel like I’m manually cranking my brain to make it work. I have other funny things too. Neuropathy in my feet. A terrible short-term memory that isn’t just, like, “ha ha we’re getting old.” Sensitivity to loud noises. Bradycardia. Nummular headaches, which are where you feel like someone’s stabbing one little spot with an ice pick. Non-nummular headaches, which are somehow worse. And occasional episodes of passing out for no obvious reason (including the time I broke my nose while falling to the floor).

As my symptoms have ramped up, the load of caretaking Aaron does has ramped up in direct proportion – he does pretty much everything to keep us both going. All of the cooking, just about all of the cleaning, all of the errands, all of the yardwork, all of the cat care. He’s underwater and burned out.

As my functionality has been decreasing, our financial situation has gotten increasingly dire.

I had been working a reduced schedule for a long time, but this year I finally went on disability leave from work. The relief was immediate – trying to keep up a job had added to my stress and made my symptoms worse. But the tradeoff was that my income was cut in half.

And here’s the thing about chronic Lyme Disease: it’s expensive. It doesn’t look expensive. It just looks like you’re lying around all day, and you can do that for free. But the doctors who are specialists in treating this kind of illness largely don’t take insurance. For years I saw an incredibly skilled doctor who really helped me… But seeing her cost a bonkers amount of money, all of which went on my credit card. I kept thinking, “Any day now, I’ll get better and can start paying off this debt.” But that didn’t happen.

Instead I kept shelling out for expensive supplements to deal with the multiple body systems that were going haywire, treatments to try to kill the pathogens, supportive therapies (things that keep me functioning as well as I can, but aren’t cures, like acupuncture, infrared sauna, and bodywork), and expensive grocery bills that are a testament to the long list of sensitivities associated with my illness.

In short, we’ve been accruing mountains of debt trying to keep me functional in the short term, hoping that in the long term we’ll reach a point where A) I can get back to earning more money and B) we won’t have to spend tens of thousands of dollars a year on health expenses.

“THERE'S ACTUALLY A CURE”

In the meantime, I stumbled across some intriguing information: People with chronic tick-borne illness are stinging themselves with bees and making dramatic improvements. It sounds like science fiction, but it’s completely true.

The first few times I read about bee venom therapy, I thought it was something desperate people did when they ran out of other options. There are a lot of “treatments” like that out there – things people do when they give up on being helped by the medical system. And a lot of those “treatments” are backed only by wishful thinking.

But the more I dug into bee venom, the less reason I could find to dismiss it. I read articles by journalists who seemed eager to disprove BVT but then discovered they couldn’t. I followed the stories of a few people doing BVT and watched them heal themselves completely, in real time. And eventually I signed up for a boot camp offered by the Heal Hive, a program that prepares you to do the therapy safely and with maximum effectiveness, founded by a woman who healed herself from Lyme and a variety of other tick-borne pathogens using bee venom.

In the Heal Hive, I saw firsthand that people were not just improving with BVT. They were completely curing themselves. As in: they tested positive for Lyme and other co-infections, did BVT, and then tested negative for everything. They’re cured. There’s actually a cure.

The process takes 2-3 years, and of course bee stings hurt, so it’s not easy or quick. But, when done appropriately, it’s remarkably effective.

I’ve watched people who started bootcamp with me go from bed-bound to thriving. People who are returning to school or to work after years on disability. People who thought they were permanently brain-damaged whose cognitive function has whirred back to life.

I finally have a sense of momentum, direction, clarity, and hope.

I’m ready to become one of those success stories.

ROADBLOCKED

But here’s the thing: In order to do bee venom therapy safely and successfully, you have to start from a place of low inflammation. Otherwise it won’t work and you put yourself at a much higher risk for anaphylaxis. Unfortunately, after three years of trying, my inflammation levels are still way too high.

The good news is I’m working with a fantastic doctor who has a plan for helping me get those levels down.

Here’s the bad news: It will probably take several more months to do it, and we have no financial resources to tap into. After eight years of pouring all of our resources into efforts to heal me, we have zero savings and are deep in multiple forms of debt. And the longer I stay sick, the more time passes with a significantly diminished income.

After joining the Heal Hive, I’d had the feeling: We’ll be okay, we’re almost there. We just need to get to the next stage and actually start treatment. And it’s true. Healing is close. But we have nothing to draw on to get to the next step. We’ve maxed out our resources and our debt limits just as we’ve reached a critical – and expensive – transition. We’re excited about this next phase, but it’s coming just when we can least afford to manage it.

For years, friends have encouraged us to use a platform like this to ask for support. We resisted for a long time because we see how much need there is in the world. But as time has gone on, we’ve come to see what our friends saw: Even two resilient people, with good judgment and careful decision making, will find that their resources are no match for eight years of a relentless illness. Now we understand how a long extended illness can financially devastate people – even people with stable jobs, coming from situations of relative privilege.

WHERE THE FUNDS WILL GO

We’re seeking support to get through this roadblock so I can finally heal.

That means spending some (probably 3-6) months doing supportive therapies to get my inflammation down, and then starting the treatment that will give both of us our lives back – me by regaining my health, Aaron by easing his burden of exhausting caretaking. Once I begin, bee venom therapy will take 2-3 years to complete, with symptoms gradually improving over that time.

Zooming out, we’re aware that this situation will leave us with debt for decades to come, no matter what. This fundraiser doesn’t address that. But that’s a problem we’ll figure out later – when my healing yields more capacity to handle it. For now, we just need help getting through the next few months.

I’m grateful to be part of the Heal Hive and to have a clear picture of where I’m going. Seeing other people fully recover is one big reason I’ve continued on this difficult journey. The other is Aaron’s incredible compassion and capacity for caregiving. It’s easy to see how this situation could topple even a slightly less stable relationship. But he astonishes me every day with his steadiness and love. As much as I’m eager to get back to a healthy, vibrant state, I’m equally eager to ease Aaron’s stress and burnout.

LAST THOUGHTS

There’s so much more I could say, but I’ve already said way too much. Chronic illness is often invisible and anyone who’s never lived through it may understandably have questions. I’m always happy to talk about it with anyone.

For now I’ll just say this: There are so many things I never thought I’d do before I got sick. I never thought I’d have to stop working. Never thought the place where everybody knows my name would be the local LabCorp. Never thought I’d willingly sting myself with bees. And certainly never thought we’d approach our community with a request like this one.

This experience has changed me. It’s changed Aaron. And it’s not done changing us. We know that.

One thing that has remained constant is the love, support, and uplift we’ve received from the people who love us. We don’t take that for granted.

I’ve seen a lot of people with chronic illness who have lost relationships because their loved ones can’t understand what they’re going through. We’ve been incredibly lucky that we haven’t had that experience. The people we love have lifted us up and helped us in so many ways – through words of kindness, acts of service, and their continued kindness and presence in our lives. If you’ve read this far, you’re surely in that group. Regardless of whether you support this request, we appreciate you more than we can say.