pills

These pills I swallow…

I get asked a lot about the treatment for Lyme Disease. The short answer is 4 weeks (minimum) of antibiotics. But that alone isn’t usually enough to clear the infection. The bacteria that causes Lyme Disease is extremely difficult to kill, and gets more difficult the longer you’ve been infected. It typically takes up residence inside cells, and can bore into bone, tissue, nervous system, brain… basically anywhere it wants to avoid the detection of your immune system.

A good Lyme doctor will work with you to get your whole body as healthy and supported as possible, decreasing “total body load” so that your immune system can focus its attention on seeking out and killing the Lyme bacteria. This is where things get a little more complicated (and why a Lyme-literate doctor is imperative), because everyone reacts to Lyme differently. Sure, there are a handful of symptoms that most people with Lyme will experience at some point–but beyond that, the symptoms can vary wildly. It can cause any manner of physical, mental, or emotional ailments. And, further complicating things, any individual’s list of symptoms will change throughout the course of the disease and treatment. A Lyme-literate doctor will assess your particular symptoms and recommend supplements, dietary changes, and lifestyle changes–along with antibiotics (most likely)–to best address your particular circumstances.

I thought I’d share my personal treatment plan as an example, partly because I get asked so often and partly because I have a very minimal understanding of the concept called “too much information.”

My meds & supplements

I take 3 prescription medications, and a butt-load of supplements to support various bodily things. I’ve tried to give a quick description of what each medication/supplement is for, along with a rough monthly cost. The reason I’m showing cost is to demonstrate that Lyme Disease is a very expensive disease to have, primarily because so much of the treatment is not covered by insurance. I spend between $350-$400 out-of-pocket each month on medications and supplements – and that’s on top of any additional doctor visits and lab fees that aren’t covered (or only partially covered). In summary: don’t get Lyme Disease.

antibiotics

We switch my antibiotics every 4-6 weeks in order to keep “tricking” the bacteria. I’m currently taking a combo of Cefdinir and Azithromycin. Previously I was on Doxycycline, which made me horribly nauseous and essentially made me allergic to the sun. The new combo is rougher on my digestive system, but doesn’t give me a horrid rash every time I step outside, so… winning?

Dose: 1 Cefdinir pill, 2x/day; 1 Azithromycin, 1x/day
Cost: $12/month for each, with insurance.

Antibiotics can throw your yeasts all off, so I’m also taking Nystatin to keep that in check. Nystatin works best on oral and gut yeast (more than the vaginal yeast that most people think of). Turns out, most of us have an overgrowth of yeast in our guts, thanks to our super awesome Western diet. I’m taking these fancy red pills now, because the more effective liquid Nystatin was making my lips, tongue, and throat swell. Fun times.

Dose: 1 Nystatin, 2x/day
Cost: $10/month with insurance.

probiotics

Since we entered into my treatment knowing that I would be on antibiotics for a long time, probiotics were essential from the beginning to maintain a healthy gut. (As I’m sure you’re already aware, antibiotics kill off bacteria indiscriminately–including the beneficial bacteria we need.) To counter the damage caused by the antibiotics, I take Bio-K (a super gross fermented dairy drink) and a daily Women’s probiotic supplement.  To combat the Nystatin, I take saccharomyces boulardii. In other words, I am swallowing  A LOT of bugs every day (a minimum of 100 billion probiotic bacteria and 10 billion probiotic yeast). Dee-licious.

Dose: 1 BioK (100 billion CFU), 1x/day; 1;  1 daily probiotic supplement (100 billion CFU), 1x/day; 1 saccharomyces boulardii (5 billion CFU), 2x/day
Cost: Roughly $110/month for Bio-K; $20/month for daily supplement; $40/month saccharomyces boulardii. No insurance coverage.

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Mushroom supplements are amazing immune boosters. We actually have these on hand year round to battle off colds, and Josh has been popping them daily for years as part of his regular health regimen. My ND was pleased to learn that I was already taking these when I first met with her, and recommended that I increase my usual dosage for the duration of my Lyme treatment. Really, we should all have some of these in our medicine cabinets. Good stuff.

Dose: 2 capsules, 3x/day
Cost: $30/month, no insurance.

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I live in Seattle, so I’m no stranger to Vitamin D supplements. My blood work showed that I was significantly low, so we’ve upped my usual dosage. Vitamin D is important for many things, but specific to Lyme it helps with energy levels and improves immune system function.

Dose: 1 capsule (5000 IU), 1x/day
Cost: $10/month, no insurance

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Fish oil helps with my Lyme-y brain fog and is an anti-inflammatory, which helps with joint pain and supports the immune system. The pills are comically huge.

Dose: 2 capsules (1124 mg), 1x/day
Cost: $18/month, no insurance

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B12 helps with my energy levels. This is my very favorite pill, since I’m no longer drinking coffee (more on that travesty in the diet section).

Dose: 1 pill (5000 mcg), 1x/day
Cost: $18/month, no insurance

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Vitamin C is another immune system boost. Josh shakes his head at this one. He’s not a believer in the antioxidants. My ND suggested that I take at least 1 dose with each meal, increasing to bowel tolerance (until it gives me the poops). I’ve stuck with 1 dose with each meal, partly because I’m not excited to give myself diarrhea and partly because all these pills are pricey and I’m pacing myself for the sake of my pocket book.

Dose: 1 pill (1000mg), 3x/day
Cost: $7/month, no insurance

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N-acetyl cysteine (NAC) is another antioxidant, the benefits of which are almost entirely over my head. It helps somehow with protecting mitochondria from cellular damage caused by antibiotics, helps with neuroinflammation, and somehow helps pull the Lyme bacteria out of individual cells. If you want to read a scary/interesting science-y article about neuroinflammation caused by Lyme and how NAC helps, cozy up with this.

Dose: 2 pills (1200 mg), 2x/day
Cost: $20/month, no insurance

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This is your basic high quality daily vitamin, with iron since I’m a lady. I can’t effectively fight off bacteria if I’m low in any of the basic vitamins.

Dose: 2 pills, 1x/day
Cost: $40/month, no insurance

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My blood work showed my testosterone was pretty low, so I’m taking a very low dose to help with energy levels and muscle recovery. It’s a cream that has to be applied to my lady bits. I especially like this one because the bottle has “labia” right on the label and I get to say awesome things like “I’m off to put some testosterone in my vagina!” Saucy.

Dose: 1 application, 1x/day
Cost: $16/month, no insurance

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I take this on an empty stomach about 30-60 minutes prior to my antibiotics. The enzymes weaken cell walls and make it easier for the antibiotics to do their job. Then, 1-2 hours after the antibiotics, I take 1 tbs of flax to help bind and pass the bacterial die-off.  I try to do this process twice a day, but the timing doesn’t always work out. I can usually swing it with my morning antibiotic dose, but not always the evening dose.

Dose: 1 tablet, 1-2x/day
Cost: $15/month, no insurance

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This is step 3 of the process described above. It’s also helpful with any digestive issues my antibiotics cause.

Dose: 1 tbs, 1-2x/day
Cost: $5/month, no insurance

Update: After 3+ months of antibiotics, I’ve been given the okay to stop taking them. I have to continue taking everything else to keep my body supported, and we monitor me closely to see if any symptoms return. If I go 2-3 more months without symptoms returning, we retest to confirm that I’ve cleared the infection. If symptoms do return, I level-up and start seeing a different ND with more experience in chronic infections. Wish me luck!

my diet

No dairy. No caffeine. No sugar. No alcohol. No gluten. All of these things are inflammatory, and inflammation taxes the immune system. No bueno. I cheat a little here and there, when it’s unavoidable.

Yes to veggies, unprocessed meats, limited fruits, nuts and seeds, legumes, quinoa and limited brown rice. And then some more veggies, especially the green leafies. And lots of water.

I was a pretty healthy eater before now, so this hasn’t been a hugely difficult transition for me. But I’m really looking forward to being able to drink coffee again. And the occasional bourbon. And pie. PIIIIIIIIIIIIIIE. The rest I don’t even really miss, aside from convenience.

my lifestyle

Sleeeeeeeeep. This is the thing I struggle with the most. I’ve always been a night owl, and I have a bad habit of taking on more than I should. I’ve had to learn to say “no” more frequently and go to bed earlier. On the weekends, I even allow myself to sit down and rest (or even nap – gasp!) when I start to feel fatigued.


This post’s song: Cure for Pain, Morphine

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