Acupuncture

Today I had a new adventure in Lymeland. I did something I said I would never do: I tried acupuncture. When I said that I would never try it, I knew nothing about Lyme disease or the pain it causes.

I have made improvements since I started my antibiotic treatment and I try to remind myself of that, but I decided it was time for something to help me cope with my pain. I long since gave up taking medicine for my pain, because nothing I've tried touches my pain levels. So, I went searching for something else.

Several friends recommended an acupuncturist in my area and so I finally caved in and went for my first treatment today. First, I did an ionic foot bath to help with detox. The water color changes as toxins are being removed from your body. First it turned orange, and then it turned brown, and then it turned black and frothy. It was both the coolest and grossest thing I've ever watched! It pulled a lot of yeast out of my body, which was no surprise to me since I've battled a sugar addiction for some time now. Wouldn't you just love to see a picture of the disgusting junk that came out of my body?! (You know you want to view it large!)

Next, I had a consultation with the acupuncturist. I wasn't sure what to expect and I was nervous. She was very knowledgeable about Lyme disease, and treats a lot of people in my area, and she put me at ease. She put an infrared heat lamp above my hip to help with my hip pain, which was very severe today, and it definitely helped. Next she inserted the needles, which only took about 30 seconds. She said there were 12 needles, though I thought there were significantly less. I felt a few tiny pricks when some of the needles went in, but not even enough to make me flinch. Then she left the room while I rested with the needles in for a half an hour. She told me I might feel cold or tingly or have involuntary muscle twitching. The only thing I felt was a weird tingling sensation in my forehead.

I go back next week for another treatment. Sometimes it can take a few times before you notice a difference. Hopefully this will bring me the relief I've been looking for!

Aromatherapy

Over the past year, I have built up a collection of essential oils. I love learning about the different oils and their healing properties. Today I mixed a few drops of clary sage and cedarwood and hopped in my lovely claw foot tub and prepared to melt away my cares. Apparently my cat, Panther, also needed to melt his worries away, too. He had gobbled his breakfast down too quickly, his food bowl was empty, and he was pissed. But he sat there purring on the edge of the tub and let the scent carry him away (I assume to a place with a bottomless food bowl).

Early on in my illness, before it even had a name, I had a lot of pain; more than I can ever put into words. It turns out that the reason for that was that my body was fighting Lyme disease, mono, and a vitamin D deficiency. That time of my illness is a blur of the most agonizing pain I've ever known.

Sometime in those early months, my friend won two tickets to see an amazing jazz musician and took me along. It was one of the best and worst nights of my life. When you're in enormous amounts of pain, all of your senses are heightened. Listening to the music took me away to another world, a world where I wasn't sick anymore. The music was so beautiful it brought me to tears. It was one of the most intense and incredible experiences I've ever felt.

However, by the time we got home I was in utter agony. My muscles were seizing up from being cramped in a tiny chair for two and a half hours. That was the most pain I've ever been in. Now I'm no stranger to pain: both of my children were born 100% naturally, without so much as a Tylenol. But childbirth was nothing compared to that night.

So there I was, writhing on the floor in agony. I couldn't talk or move. My friend (who is a massage therapist) had an aromatherapy bottle and opened it up and waved it under my nose. I was in my own world and was unaware of anything around me other than my pain. All of the sudden, I smelled something so beautiful it took my breath away. It took my brain a minute to figure out where it was coming from. My senses were so heightened from my pain level that it made the smell so intense I felt like I could reach out and touch it. It gave me something to focus on instead of my pain.

From the moment that little bottle was held under my nose, I fell in love with aromatherapy. I credit that bottle (and the friend who held it) with not only saving my life, but sparking a passion for aromatherapy. My friend lent me that little bottle and many times when my pain level would start to escalate, I'd let that scent take me away to a peaceful place. What a wonderful outlet for pain!

Lyme Brain Strikes Innocent Woman!

Headline News, Tonight at 9: Lyme Brain Strikes Again!
Says woman, "I have a blog? Oops. I forgot."

Who is this woman? And what is this "Lyme Brain?"
Stay tuned for more Adventures in Lymeland!

Dreaming Big

Last week, three out of four of us in the house were down with the flu. Perhaps now that I'm not juggling the flu and Lyme disease, this has something to do with why I've felt better this week than I have in months. But whatever the reason, I'm feeling good and I am thankful for that!

The problem with Lyme disease is that there is no way to know how long "feeling good" will last. It's constantly up and down with this disease. I've been sick for so long that it's hard to even imagine that my medicine will work and I will get better. That's not to say that I don't believe that I will get better, just that it seems so hard to grasp after being sick for so long. But after having several consecutive days of feeling good, my mind is starting to drift into dreams of big things again. Literally very big things!

It has been 5 months now since my beloved horse, Shiloh, passed away. I have been too sick to get another horse and because of this, my heart seems to have put up some kind of a wall preventing me from getting too attached to the idea of another horse, though it is what I want more than anything (excluding a cure for Lyme disease!).

With several days in a row of feeling good, I found myself slipping back into the dream of having my own horse again. I want this so badly. I want nothing more than the feeling of running a curry comb through the fuzzy winter coat of a horse, my horse. I want nothing more than the feeling I get when I run my hands through the mane of the horse I love. I want nothing more than to inhale that unmistakable scent of horse. I want, I want, I want! It was so much easier when I had a safe distance between my dream and my illness...

This weekend I plan to take a trip to the barn for some much needed horse therapy. If I continue to feel this good, I might even take up my friends' offers of a trail ride. My heart needs this. It has been months since I've been on a horse. Fingers crossed!

I Hereby Vow

When most people have a problem, they tend to become immersed in it, looking for a solution or a way out. However, when you have an illness, your life becomes consumed by it. Since my life became turned upside-down by Lyme disease, I have been eaten alive by a new world-a world that now includes an entirely new vocabulary: spirochetes, Herxing, Borrelia burgdorferi, biofilms, etc.

There's no way around it. I can't get away from Lyme disease. I live it and I breathe it. I also devour any information I can get my hands on. It's as though I'm on a quest to find that elusive thing that I want so badly but isn't actually out there; hell, I can even TASTE it: I'm looking for a cure. And I will stop at nothing. I want out of this deal! I don't want Lyme disease. Let me off of this train!

While I wait for my magical elixir, I scour PubMed documents intently. Everyday, I Google "Lyme disease news" to see if today is my lucky day. And. I. Drive. My. Husband. Crazy. Lyme disease this, Lyme disease that. Well, I've got news! I just finished my first non-Lyme related book in a very long time. Absolutely no characters had Lyme disease or tried to tell me how to cure mine. And it felt good.

Like an obnoxious person who knows not of a thing called "personal space," Lyme disease is always there, breathing down my neck. It's not easy to take a break from this incessant need to find a cure. I can't put down my symptoms and come back later. I can't forget about my pain levels. But I hereby vow to balance out my reading repertoire with books that have nothing to do with Lyme disease.

Q & A with Alyson1derland

My aunt recently asked me several very wonderful questions about Lyme disease. Since my answers were very long and complicated, and since a lot of other people have come to me asking many questions about my disease, I decided to address them on here to help people understand my Lyme disease a little better. If there's something you've been curious to know about my disease, feel free to ask me. While I'm certainly no expert, I will answer to the best of my knowledge.

A few days ago, my aunt mailed an article to me about celiac disease, noticing that a lot of the symptoms of celiac are the same as Lyme disease. I asked my doctor to test me for celiac disease when I first got sick, because I had so many of the symptoms. However, my test came back negative. I've since learned that a lot of people with Lyme disease are/become gluten sensitive, so even if they don't test positive for celiac disease, many people with Lyme can't tolerate gluten.

I am on a strict no gluten (wheat), no dairy, and no sugar diet (well, low sugar is as best as I can manage). Though difficult to maintain, this diet is highly recommended for Lyme disease. The Lyme bacteria feed off of sugar and yeast, and you do not want to feed the Lyme disease! I repeat, do NOT feed the Lyme disease! Gluten increases inflammation, and since Lyme disease is an inflammatory disease, cutting out inflammatory foods is essential.

Question number one: How and when did I get Lyme disease? I have had symptoms of Lyme for a huge part of my life. I've had a handful of tick bites, but never got the bull's eye rash typically associated with Lyme disease. I've since learned that only about 50% of people get the rash (I will caution that there are a lot of variants on that statistic). When I was around 15, a lot of my symptoms started: crippling knee pain (I was put in physical therapy for this without anyone ever looking for a cause of my pain!), acid reflux, depression, anxiety, asthma, an ulcer, restless leg, horrible body aches, severe memory problems, thyroid problems, etc. I was told I had chronic fatigue syndrome (many doctors now think chronic fatigue and fibromyalgia are undiagnosed Lyme disease), though nothing was ever done for me. I remember feeling horrible for years, but I was still able to function. Let's just say that I was very grumpy during this period of my life...

When my husband and I first started dating, I was bit again (though I was bit by the love bug, that's not what I'm talking about here, people!). I never got a bull's eye rash, and I never thought about that tick bite again until piecing things together recently. All kinds of nasty symptoms starting popping up again: panic attacks, anxiety, depression, agoraphobia. I developed restless leg syndrome so bad I would wake up crying in agony for hours until it would stop. Then I was hit by an extremely severe case of mono for several months. After the mono passed, I had some leftover symptoms, but I was able to function again.

In August of 2009, I went on a trip to Canada and I haven't been the same since. Whether or not I contracted Lyme disease there or if it's something I've had in my body for years, we don't know for sure (scarily, you can get Lyme disease over and over). While I never found a tick on me when I was in Canada, I also never checked for ticks, so I could easily have been bitten and the tick could have dropped off before I even noticed. Yes that happens, and all I can say is welcome to a controversial hell on earth! According to this website, "fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete."

When you consider the fact that ticks can be as small as the period at the end of this sentence, detection can be tough. Have a look at the picture here to see just how small an embedded tick can be. Imagine trying to find that if it was in your hair! Though not as common, Lyme disease can also be transmitted from mosquitoes, and I was absolutely eaten alive by mosquitoes in Canada.

What I do know is that while in Canada, I got a very strange rash under both of my armpits that lasted for about 2 or 3 months. It itched ferociously and I saw several doctors for it over the weeks, all of whom diagnosed different things and prescribed various ointments that did nothing to alleviate the intense itching. It eventually stopped after a few months, but by that point, I had developed several other weird symptoms until finally, after being prescribed a course of antibiotics for a persistent sinus infection, my body was pushed to a tipping point and life as I knew it came crashing down around me. I became debilitated to the point of not being able to function and I've been trying to fight my way back ever since.

I was not checked for Lyme disease for many months because my mono test was positive (which is common with Lyme disease because it wreaks havoc on your immune system). It became apparent to me very quickly that my strange symptoms and unbearable pain had little to do with mono, but I was brushed off by doctor after doctor who ignored my desperate pleas for help. Always listen to your gut! When I was eventually tested for Lyme disease, my test came back highly positive for both a current active infection and a longstanding infection (meaning it had likely been in my body for over a year if my memory serves me correctly). My full Lyme story is here.

Question number two: Is there a cure or does it go into remission? If you are one of the "fortunate" people who finds a tick bite, develops the bull's eye rash, and gets treated correctly, you can most likely be cured. The longer you've had Lyme, the harder it is to treat. Lyme can lie dormant in your body for years. It can go into remission, although stress, among other things, can weaken your immune system and bring it back out.

One huge problem with treatment is that the ticks don't just transmit Lyme disease. There are a host of other co-infections that you can pick up along with Lyme: Bartonella, Mycoplasma, Erlichiosis, Babesia, to name a few. They cause their own set of symptoms which can be just as debilitating, just as hard to diagnose, and just as hard to treat as Lyme. You can get any and all combination of co-infections along with Lyme causing an extremely complicated and hard to treat case.

When you have a case of Lyme disease that wasn't treated properly, it can be very hard (and sometimes impossible) to eradicate the spirochetes from your body. The spirochetes bore into your muscle tissue and organs and are capable of doing an incredible amount of damage. They are very good at hiding from antibiotics. They can actually turn into a cyst form in order to protect themselves from the antibiotics, and they wait until the coast is clear to come back out. Treatment is very, very complicated and I don't envy my doctor one bit!

Question number three: Is it genetic or contagious? Lyme disease is not "catchy." You can't get it from kissing someone with Lyme. Nor can you get it from eating or drinking after them. Some doctors and scientists believe it can be sexually transmitted. It has also been found in breast milk. It has been passed from mother to child through the placenta, though no one knows how likely that is, because it is not something that can be studied. Many mothers who were infected with Lyme disease during pregnancy and were not treated (mostly because of misdiagnosis) have had miscarriages or stillbirths.

There is a lot that is unknown about Lyme disease and it is rife with controversy. This is a wonderful website to go for information about Lyme.

Close Encounters of the Lyme-Haters Kind

Ever since I was a little girl, I've always marched to the beat of my own drum. I've never been one to conform to a crowd. It's fair to say that I'm usually pretty comfortable in my own skin. However, there is something that has been happening lately that makes me more and more uncomfortable: brief (though not brief enough for my liking) encounters with condescending doctors and nurses who look down on me for my diagnosis of Lyme disease.

Yesterday my asthma, which has been pleasantly quiet for the past several months, reared its ugly head and I ended up needing to make a visit to Urgent Care. The nurse who checked my vitals wasn't interested in chitchat, which was fine with me since I wasn't feeling well. However, as she started verifying my long list of current medicines, she had a difficult time hiding her disgust. "You're on doxycycline?? And plaquenil? AND zithromax??!" "Yes." "AND you're on blah, blah, BLAH?!" "Yep." And with that, she turned her snooty butt around and walked out the door and didn't even say anything more to me! No "thank you", no "the doctor will be right with you." Nothing. To this lady, I might as well have had the plague.

Now, the proper thing to do would probably be to just let this slide by. But like I said, I've never been good at going along with the crowd. I can't stop thinking about this lady and how close-minded and hateful she was (maybe you had to have been there). With more and more cases of Lyme disease and its co-infections on the rise, when will this hatefulness stop? Sadly, I don't think it will until Lyme disease strickens more influential people. Imagine what would happen if Oprah had Lyme disease? Or Hillary Clinton? Or fill in the blank ______?

I never asked for Lyme disease. And I certainly never asked to be thrown smack dab into the middle of one of the most controversial diseases around. Why would I ever want that? I can't sit quietly and let all the physical pain I've endured over this past year go to waste. I want my story to be heard. I wish people could walk a day in the shoes of someone with Lyme disease. For now, the closest I can give you is this, which was actually written on a good day. Some days my body hurts too much to even get out of bed.

I sugarcoat a lot of my disease on this blog, because who wants to read a depressing play-by-play of unending pain and agony? But I'm letting the cat out of the bag: Lyme disease is the most pain I've ever known in my life. What a smack in the face to be treated like an outcast for having this disease! It was certainly not the first time someone has looked down on me for my disease, nor will it be the last. Would you be brave enough to go against the crowd and speak up for yourself?

Who I Am

To my friends who never knew me before Lyme disease:

Did you ever wonder what I was like before I got sick? Did you know I didn't always act so clumsy and drop things all day long? Did you know I didn't always wander from room to room trying to figure out where I was going or what I was looking for? Did you know I actually used to have a good memory?

Did you know I used to cook and bake every day (yes, me, the girl who can't even be trusted with a teapot!)? Did you know I used to make bread for my family every single week, kneading the dough for 15 minutes?

Did you know I never used to take medicine, not even Tylenol? Did you know I vowed never to take vitamins? Take a look in my medicine cabinet now and have a good laugh with me.

I used to ride my horse all the time. I used to go for long walks every day. I used to go hiking and camping. I used to play with my kids all day long and take them to playgroups and playgrounds. I used to drive everywhere. I used to spend hours wandering around taking pictures.

Lyme disease has stripped me of so many things, but that's all they ever were: things. Lyme disease can never strip me of who I truly am. I am still a tenacious, passionate, courageous girl. I am still silly and full of life. Though I now act like a ditzy, clumsy, scatterbrained person, that's not me. Look closely, because the true me is peeking out from behind my fragile body.

I hope the girl you see is strong and brave, witty and resourceful. I hope you won't see me for what I am not, but for what I am.

Aloe Vera Juice

It's a bad day to be a spirochete! Look out Lyme disease: I'm back on antibiotics. This afternoon, I had to grit my teeth and bravely fish out the unopened emergency bottle that had been banished to the back of the fridge for months (kept lovingly alongside of a few disgustingly unidentifiable food items).

What is this mystery drink that I keep on hand but have been avoiding at all cost? Why it's herbal sludge, better known as Aloe Vera Juice! Let's just say it tastes (and smells) about as good as it looks!

I'm now desperately canceling out the taste with a cup of my favorite green jasmine tea and listening to the strange sounds of my belly trying to figure out what the hell I just drank. I feel as though I just put my stomach in a time-out. We'll see if it gets the hint: act up like this again, stomach, and you'll be digesting more of this tasty goop!