Saturday, September 29, 2012


Recently, a few of my dear friends ganged up on me and somehow managed to persuade me into trying a new doctor for treatment of my chronic Lyme disease. This doctor has degrees in both Eastern and Western medicine, and, although he came highly recommended to me, the thought of going to even one more doctor sounded like about as much fun as getting a root canal. But a tiny little voice inside of me said, "Go." So, I went.

"Can you stick out your tongue, please?" Dr. L. asked. After a brief peek at my lovely lengua, the doctor told me with a concerned look on his face that I had blood clots. Yikes! "And you have very poor circulation," he went on. I suppose that may have something to do with why I always feel like I'm in Antarctica even in the summer time. 

Dr. L. did acupuncture on me and I was literally bouncing off the walls for six glorious hours. And that's all it took to convince me that this is a doctor who can really help me. I've been seeing him twice a week for two weeks now. And I feel amazing! I expected that he would tell me to stop taking antibiotics and that they are killing my body. On the contrary, he believes that there is no way you can heal from Lyme without antibiotics!

I will be seeing Dr. L. in conjunction with my regular LLMD (Lyme literate doctor). I've tried acupuncture for my Lyme disease in the past (with a different acupuncturist) and really didn't notice much of a difference, but I cannot believe the difference in my body from only two weeks with Dr. L. My energy is back and I can function again. I'm able to fall asleep at a normal hour and have been able to wake up easier in the mornings, for the first time in years!! And--drumroll, please--I haven't had any of my seizure-like episodes since seeing Dr. L.!

 A normal visit with Dr. L. entails acupuncture, laying on an acupressure table (heavenly!) and jade hot stone therapy. He highly recommended that I get an acupressure mat to lay on at home, which I did (thanks, mom!), and it makes a big difference. Dr. L. has seen big improvements in his Lyme patients who lay on spiky acupressure mats, like the Spoonk or the Nayoya Acupressure Mat. (I, personally, chose the Nayoya mat and neck pillow, and I really love it, but it definitely takes some getting used to! You're laying on hard plastic spikes and you have to build up a tolerance to it. It really does help my pain levels, though.)

I also have seeds (yes, you read that right!) taped to my ear to help me locate six acupressure points in my body. I am supposed to stimulate the acupressure points at least five times throughout the day. I feel like a Chia Pet!

I am very blessed to have a darn good trio of doctors working to get me better--my Lyme doctor, my acupuncturist and my neurologist. I am in good hands and I feel in my heart that these three are going to give me my life back.

Tuesday, September 18, 2012


Improvement from Lyme disease is a strange and slow process. I haven't had as many of my seizure-like episodes; however, I am still having them. My energy has increased dramatically, but it comes and goes in the blink of an eye. I still have huge Lyme crashes from out of nowhere, ravaging my body with a barrage of fatigue and pain (usually lasting for a few hours at a time).

Tired of being sick, I've been greedily snatching up bursts of energy like a little kid let loose in a candy store. I've ridden my horse a few times in the past week. I've worn circles in the ground, spinning around and around with my hula hoop. Yes, I love to hula hoop; so much so, in fact, that I combined the two a few days ago and hula hooped on my horse!
Hula Hooping (minus the horse, of course)

My Happy Place!
I even got to go camping this weekend. Ever so slowly, I can feel my body starting to fight back against this dreadful disease and I can feel my Bicillin injections starting to work their magic.

Living with Lyme disease has been such a difficult journey these past few years, but it has truly opened my eyes to the beauty of life. When you have to fight every single day of your life to be able to do the things you love, they become treasured and no longer taken for granted. I hope I never forget the painfully beautiful lessons I've learned from my trek through Lymeland.

Me with my blind dog, Maya, who has taught me a thing or two about overcoming! 

Tuesday, September 4, 2012

A Fighting Chance

Emu! Photo credit for this amazing shot here.

An emu is a very funny looking bird. It's also the name of the place where I spent my Labor Day weekend--the EMU, aka the Epilepsy Monitoring Unit. Sadly, there were no emus there. But with my wires and electrodes, I was about as funny looking as an emu!
All in all, there were 24 electrodes on my head and 6 on my chest.

Being in the hospital is rough. Being in the hospital with a controversial disease is a nightmare. (I have chronic Lyme disease if you're just tuning in to my blog.) I was treated respectfully, but the neurologists did make their beliefs on Lyme disease known to me. "You do know Lyme disease is a very controversial topic, don't you?" "Lyme disease is eradicated with a short course of antibiotics; after that you're fine. There is something called Post-Treatment Syndrome, but that's pretty rare." "We don't understand why you're having these "spells," but we can send you to a psychiatrist if you like."

It wasn't pleasant, but I survived my stay in the EMU-with-no-emus and I had two episodes while there. I found out today that the results of my video-monitoring EEG were completely normal; I am not having epileptic seizures. What a blessing!

However, if not for one thing, I would be very upset since being sent home from the EMU with nothing other than a (rejected) referral for a psychiatrist. That one thing? I had an appointment today with a Lyme-friendly neurologist. Other than my Lyme doctor, this was the only doctor that I have ever been to since my diagnosis who was extremely knowledgeable about Lyme disease and just how badly it can ravage the body and brain.

I cannot describe the feelings I felt today, seeing this neurologist who not only validated the immense suffering that I have been through, but told of other Lyme patients with similar things going on. This was a doctor who, instead of washing his hands of a patient with Lyme disease, was not afraid to say that there is so much that is still unknown about Lyme disease. This was a doctor who treats patients with Lyme disease instead of shoving them out the door, leaving them feeling baffled and discredited.

The neurologist said my episodes are a type of hyperkinetic movement disorder, which is caused by a problem in the basal ganglia part of the brain. I've had a very exhausting several days and my brain is struggling to wrap up this post. It's getting extremely difficult for me to write, but I really wanted to put out an update tonight, because I know a lot of family members and friends are waiting to hear what is going on.

In a nutshell, we don't know exactly what is causing my episodes. It is highly likely that they are being caused either by my Lyme disease or another tick-borne disease that I have called Bartonella (to which I believe I was very recently reinfected). The episodes may go away on their own or they may get worse; at this point, we don't know. What I do know is that I feel like I actually have a fighting chance now knowing that there are still doctors out there like my Lyme doctor and my neurologist who aren't giving up on me or others with this incredibly complex and misunderstood disease.

I have two options right now. I can do a short course of steroids (which is generally contraindicated with Lyme disease) or I can take anti-seizures medicines, which has proven to be helpful in treating these, uh, I don't even know what to call them anymore...these things. My brain is shutting down now. I need to go to sleep.