Thursday, August 21, 2014

How I'm Curing Lyme Disease

Ironically, I feel awful as I write this.

That's the first and only time I plan to ever admit that in a blog post. :P

I don't keep my battle with Lyme disease a secret around here anymore. There so many people being diagnosed with this disease daily that are going through health struggles we can't even imagine. They need support, encouragement, and Jesus. I write about Lyme disease not always because I want to, but because awareness needs to be raised, and. If can help show love to some of the people battling Lyme, I'm going to do everything I can to accomplish that.

A great chunk of the information you read about Lyme disease is actually false, to put it plainly. As this disease rockets to epidemic levels all over the East Coast, many doctors are pioneering and dedicating their lives to finding a cure. However, just as many medics are engaging in heated debates, refusing to treat patients, and denying the existence of Lyme. Meanwhile, patients are struggling every day. Some fight for the color to return to their face. Some fight for the energy to take a shower every morning. And some fight for their lives.

My doctor says it isn't fair.

I don't have the guts to argue that Biblically.

But is it possible to completely cure Lyme disease? If so, how do you do it? Some people tell me it only takes a few weeks, is that true? 

Well...it's complicated.

It's possible to cure Lyme disease (in most people), but it's a super tricky and difficult process...both for doctor and patient. Numerous people get false negatives from their tests, and each case is different. There's no one-size-fits-all model.

Unfortunately, the CDC runs with the one-size-fits all protocol. Meaning, that if you go outside of that protocol (which hundreds of us have to do if we intend to get better), insurance won't cover treatment. Often known as the "rich man's disease," Lyme can cost hundreds of thousands of dollars to treat.

                          

So...what about me, though? How am I treating it? 

After six months of blood work, tests, and research, I was diagnosed and treated by our regular physician in 2012. He gave me three weeks of Doxycycline (the general protocol recommended by the CDC) and sent me on my merry way. I returned to his office three or four more times that year with changing and worsening symptoms, but he convinced me I was fine. I probably just had allergies. Over a year later, a dear friend of mine was diagnosed with Lyme by a professional doctor. She'd watched my health decline over the year, had done an immense amount of research on the Lyme debate, and told me I needed to go get checked out by a professional.

It took me four months to get an appointment with a Lyme-literate doctor. And in those four months, my health dropped drastically. By the time I met for my the first consultation with my current doctor, I was exhibiting 70+ symptoms of Lyme. 

But the problem was, none of my blood work came back positive. According to the tests, I had no traces of Lyme in my blood stream. My doctor did a bunch of guess-work and conducted immune system, genetic, and hormone tests to see how my body was (or wasn't) working.

She explained that, according to the genes passed down by my parents, I was one of those unlucky people who harbored an immune system that couldn't bind up toxins and create sufficient antibodies. It's likely that any form of sickness I have now or in the future is going to escalate faster and make me feel worse than most normal people.

The most common test for Lyme is known as a western blot. The western blot tests to see if my body has produced any antibodies to fight Lyme. If it has, then my test will come back positive. However, if my immune system genetically cannot hardly produce antibodies to fight the infection, there aren't going to be enough showing up in a western blot test, and I could easily produce a false negative. Crazy, huh?

We started treatment right away, because getting better was pretty critical. We had a guess that I could be suffering from a mold intolerant disease (the symptoms are similar to those of Lyme), and in that case, activated charcoal would be able to clear out the mold toxins. We tried that, first.

While the activated charcoal helped some, it didn't come close to healing me. We decided to start long-term antibiotics on an experimental basis. More about that later.

Yes, I chose traditional medicine. No, I didn't necessarily want to. But, as I stated before, treating Lyme can cost hundreds of thousands of dollars, especially if you treat it naturally. The natural route works great for some people, but it's also known to take twice as long. We couldn't afford the doctors or medicines to treat me naturally, and as I was already looking at a few years on serious antibiotic therapy, it was hard to think about it taking twice that time. That's the decision my family made. I do love to look into easy (and inexpensive) natural treatments on my own, and have tried some. In general, I'm being treated traditionally.

But...how does this antibiotic therapy stuff work?

As I said earlier, there's no one-size-fits all. Different methods work for different people. It is true that if you diagnose Lyme disease super early on (and you have good genetics), you can kill it with Doxycycline (a standard antibiotic) in about three week's time. Piece of cake.

But...if you live three years misdiagnosed like I did, the process gets a lot more complicated. In that three year's time, the Lyme bacteria transmitted by a tick bite traveled into my bloodstream, nervous system, muscles, brain, heart, and other major organs. It created cysts inside my body. Hard as you try, a few doses of Doxycycline won't come close to blasting that kind of Lyme. This stuff takes years to get rid of.


November, 2013

I started with doxy, though. We found out from the other tests my doctors had conducted that my hormones and immune system were a mess. A definite indication that there was something attacking my body, even if I couldn't get any positive blood tests. The immune system is genius, as my doctor puts it. It doesn't just attack itself for no reason. MS, ALS, Chronic fatigue, Lyme...whatever you have. Something deeper has to be going on, and whatever that something is, it must be treated.

If I began to improve just a wee bit on the Doxycycline, my doctor would take that to indicate that Lyme (or a similar co-infection) was the main cause of my illness. There were a few signs we could use. For example, doxy is known to help fix facial paralysis in Lyme patients. If I noticed muscle control returning to my face, that would be a pretty distinct sign. But if Doxycycline didn't do anything, we'd reexamine our options.

I don’t honestly remember much about those few months we experimented with Doxycycline. The Lyme was deep into my brain, and I couldn’t remember simple things like my best friend’s phone number. Sometimes I would turn to put the peanut butter away…and five minutes later, realize that I’d just placed the full jar in the sink, rather than the cabinet. School tests were terrifying and impossible. I couldn’t carry on a simple conversation without forgetting what I was going to say. Once, I even served uncooked muffins for breakfast (yes, batter in muffin tins), because I couldn’t remember they needed to be baked.

I moved into my sister’s bedroom, because she had wood flooring. And I fought like crazy to retain the ability to read and write. Reading I managed to maintain pretty well, but when I wrote, I began spelling simple four-letter words incorrectly. Brandilyn Collins, a well-known Christian suspense author has a similar story.

I guess we thought the Doxycycline was working, because four months later, we decided to step it up a notch. Clarithromicin and Flagyl were next on my experimentation list.

Clarithromicin helps the Doxycycline out, killing off some different forms of the bacteria. It’s a large yellow pill that smells sweet, but a nauseating kind of sweet. It turns your tongue colors (so much for those tongue-revealing selfies), creates a nasty taste in your mouth a few hours after you take it, and causes you to lose any appetite you've still managed to maintain. Other than that, it’s pretty easy going. As long as you have food to take it with, you probably won’t have to worry about your stomach turning on you.

Flagyl is another story all together. When you touch it, it leaves white powder on your fingers. The same white powder gets in the back of your mouth, and cannot be washed out with water. It makes you gag and can only be successfully washed down with a spoonful of peanut butter. Flagyl is known as a “herxing drug”, and can only be taken for two weeks at a time.

So…wait, what’s a herxing drug?

Flagyl’s main purpose is to break down the cysts of Lyme that have collected in the brain and organs, as I understand it. As the disease breaks down and dies off, it lets out a fume or toxin into your body. That's a fancy way of saying that when you start your first days of Flagyl, you can expect to be sick out of your mind. This process is known as a herxheimer reaction or "herxing".

I take Flagyl in rotations. For two weeks, I take it consistently, twice a day. Then, I take a two week break and only have to deal with doxy, Clarithromicin, and others. At the end of that break, I start Flagyl back up again, and the herxheimer reaction runs its course once more. Flagyl doses have to be timed. I need to start it on a specific day if I want to be off of it in time for Christmas or summer camp.

We were super excited the first time I took Flagyl and showed herxing symptoms. Yes, it was vile. But because my body reacted to it, we knew the drug was successfully killing something. We were able to say that yes, I did indeed have Lyme (or something closely related), despite my falsely negative tests. It created less of a guessing game, and more hope that in the future, I’d be able to get better. Now we had a closer idea for how to treat me.

I continued on constant rotations of Doxycycline, Clarithromicin, and Flagyl. Six months later, we added Quastran (generally used for high cholesterol - I'm taking it off-label) that we hoped would clear out the toxins and “dead Lyme” flushing through my liver. Questran is in powder form and had to be mixed in water and taken four times a day, separate from the probiotics, activated charcoal, and the two daily rounds of antibiotics. I took pills or clouded water every two hours for a period of months, and friends could often see me at school or the library carrying around a backpack full of medicine.

May, 2014

Because Questran has to be taken so often, my doctor and I decided that I could take a break from it this summer, as I was traveling a great deal and working at a Christian Education Center, where taking medication every two hours would be kind of an inconvenience. We also took a break from Doxycycline. Along with killing bacteria (good and bad), doxy removes a great deal of the oil from your face and hair. Somewhere along the line, it makes your skin ultra sensitive to the sun. Even being close to a window, you can feel your skin begin to tingle, burn, fry, and sometimes, turn numb. Not the greatest for summertime.

We started another drug recently, too. It's called Plaquenil, and helps treat Bartonella, another tick-borne disease that I exhibit symptoms of. 

Because this kind of treatment can be so hard on your organs, I take a trip to the blood lab every two weeks to get my numbers checked, and make sure nothing's going wrong with my liver. My lab nurse is pretty cool. She writes books, too, knows my publisher, and sometimes she reads my blog.  

After major herxing, self-given pep-talks, sleepless nights, and medicine-taking discipline, I started seeing huge improvement about ten months after beginning antibiotic therapy.

Lyme isn’t a broken leg. Your doctor can’t say, “You’ll be back on your feet after four months of that cast.” I could ask my doctor today to give me an estimated “get better” date, and she wouldn’t have an answer. It can be anywhere from a period of weeks, or a period of years, depending on how my body reacts. I could even be part of that percentage that doesn't ever get fully better, we don't know. 

Believe me, when you’re herxing on Flagyl, you definitely feel like that percent. 

I’ve hit and passed the year mark, and no, I’m not healthy yet. I still wear knee-braces when I’m playing sports, or having a rough day medically. I’m still back and forth with my rotations of Doxycycline, Clarithromicin, Flagyl, Questran, charcoal, Plaquenil, and probiotics. Sometimes I have trouble eating or smelling food. When I’m stressed, I get sicker. I took the year off of school because I was struggling with the memory work.

But…I can memorize. I can play sports. I can eat food without getting sick. I can walk up the stairs or take a shower and not have to worry about being exhausted the rest of the day. My heart doesn’t vibrate or go into spasms when I’m sleeping. My head doesn’t tingle, my fingers don’t hurt or twitch or move unless I want them to. In the past few days, I’ve written a couple thousand words, and edited a WIP without any problems. I don’t have to use makeup to hide an ashen face. 

My relationship with Lyme disease is far from over. It will affect me for years to come. Today, I may have nothing on your health…but for me, I am better than I have been in nearly four years. And that’s pretty exciting.

This is how I'm attempting to cure Lyme disease.

Understand though, that this may be my protocol. It may be the protocol for many other Lyme patients out there. But it's not necessarily the only way to treat Lyme, and it doesn't work for everyone. 
There are some 20-year Lyme patients who could look at this writing and say you're only taking those medications? Hon, you're practically eating cake! And it's true--to them, I am eating cake. By the grace of God, I’m not having surgery. I’m not getting pumped with an IV.

But this is me. This is how how I’m treating Lyme, and this is how I’m slowly, but surely making a comeback.

*

Disclaimer: this post was originally titled, How to Treat Lyme Disease: The Basics and was requested by Heather and Ana. For more information about  Lyme disease, how to "cure" it, and the doctors treating in your area, check out ILADS, Under Our Skin, this article, and this one.
Lyme is often known as the “Master imitator.” It can look like a lot of other diseases, and it’s crazy hard to diagnose. It’s also reaching epidemic levels. Even if you don’t remember a tick bite, Lyme is a sneaky manifestation. Mothers with Lyme can pass it to their babies, and some believe it can be transferred through mosquitoes and saliva. 

If you’re suffering with crazy unexplained symptoms, check out the master symptom’s list, and look into visiting a professional Lyme doctor (not your regular physician). Also, always feel free to contact me for information, love, and support. I may be able to help point you to some doctors, too.

I hope this was eye-opening to you guys. Be aware! 50% of ticks in infected areas carry Lyme disease. Many patients never remember a tick bite, or the popular bull’s eye rash. This bacteria is debilitating. Once tick could change life as you know it. Be smart. Play safe.




:: Finally, to read more of my own musings on Lyme Disease, click here ::

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7 comments

  1. Thank you so much for posting—and not just because I requested it, but I think I've been looking for that perspective a long time. You can read a lot about symptoms on the medical websites, but the accounts are so much rarer. People don't like sharing those kinds of things. It exposes. I love the depth you've gone into, because I know a lot of people wouldn't dare. And I can't imagine what it's like to live with that struggle, but in the same regard, I can't imagine how satisfying it must be to look back and see how far you've come. But that's just me. Again, thanks. That was kind of awesome.

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    1. You're welcome, Heather! However this perspective helped, I'm glad that it did. Lyme is a super hard disease for other people to understand. I've had people come straight up to me and openly explain that they don't believe in Lyme, and they think I'm just doing it for attention. So, I hope that posts like these will not only spread awareness, but also help healthy individuals have a better understanding of what Lyme patients are going through. Just because someone looks perfectly healthy on the outside doesn't mean that they truly are.
      Yes, it does expose. But I hope that in exposure, I'll be able to save a few beautiful souls from having to deal with this disease long-term. If you know about Lyme, you'll be less likely to misdiagnose, mistreat, or go to the wrong doctor. Anyway! Feel free to e-mail me anytime, Heather, if you want to talk Lyme! Thanks for the comment!

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  2. Hey Stephanie! It was great to hear your story. You truly are amazing. I would have never have guessed you had been through all that, you just show God's grace always. I was just thinking about how you said everyone is affected differently. I have a another friend with Lyme disease and it caused her to develop a minor (thank goodness) water allergy and I think some back problems. Hang in there girl. I will pray for you.

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    1. Amanda!!! :) I didn't know you read this! Crazy! Thanks for your lovely comment and undeserved compliments. :) And I totally can't believe you remember something I said. Now I feel super honored.
      That's so sad! Is she allergic to all water, or just city water? I know a lot of Lyme patients who have major troubles with the chlorine in city water. The allergy is something I've seen healed though...it just a lot of time and patience. I hope she feels better! Would it be too much to ask for your friend's name? You could e-mail it to me, if you want. I'd like to pray for her.
      Love and miss you, Amanda!

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  3. Well done. :) In a similar vein, I suffered for years which cluster headaches until I worked out a cure for myself. Haven't had once since. It's been almost a decade. What I learned in the process is that each of us is unique and there is no real one-size-fits-all cure. Most importantly, I kept up with researching what worked and what didn't and finally found something that did. It was a hybrid approach between science and homeopathy. But it worked. Hope your approach does too. Hugs Uncle B.

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  4. Thanks so much for this post. I can't believe what you must go through everyday taking all of those different medications. I can hardly stand just taking cough medicine once in a while. It's wonderful that you have such a positive outlook and you're not always complaining. I never would have thought that you had gone through so much. I'm praying for you!

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    1. No problem, Ana! Thanks for requesting it! Yep, it's definitely a lot of medication to keep track of, and kinda hard to get used to at first. But it's not so bad. I know people who take far more than I do. I'm grateful.
      Thanks for your comment!

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