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Alana’s Lyme Journey – Part 1 – What the heck do I have????

Alana’s Lyme Journey – Part 1 – What the heck do I have????

First, let me start with a little background information on myself.

I stay at home full-time with my four kids and homeschool my youngest daughter and son. I am very fortunate to have a husband who is super supportive and who conveniently works from home.

I am also very fortunate to work part-time from home and happen to have my husband as my boss!

I love running long distance and was in the process of running my second Boston Marathon when it all started to hit the fan with my health.

I have done a few sprint triathlons and was hoping this year to venture out into an Olympic distance race. I also LOVE the mountains and have been blessed to make it to the summits of Mt. Rainier, Mt. Kilimanjaro, and Mt. Elbrus.

 

I have always been a very healthy person and except for the injuries that come with any endurance sport, rarely ever went to the doctor. At the end of January, I started getting this weird limp in my right foot. I was recovering from a calcaneus stress fracture in my other foot, so I thought perhaps I might be overcompensating.

Well, the limp got worse and was told by my chiropractor that it might be drop foot. I had never heard of that before and so immediately made an appointment with my orthopedic doctor and with a neurologist as well.

Both doctors did MRIs. My orthopedic doctor did an MRI of my hips and found nothing that would indicate that I had an injury.

My neurologistMy neurologist did an MRI of my spine and brain, he did an electromyography and nerve velocity conductions tests and ordered a bunch of blood work. My MRI with him was clear. There was no sign of a tumor, stroke, injury, disc herniation, or Multiple Sclerosis. The nerve tests did show that I had carpal tunnels syndrome in both hands.

I don’t know how I could have developed carpal tunnels, but I did share with the doctor that I have had numbness in my right hand for over a year and that it had gotten worse over the past six months.

Everything in my bloodwork was normal, except that I got a positive test result for Lyme Disease on the ELISA test. My neurologist ordered a Western Blot test to confirm this, but that came back negative. He said that he didn’t know what was wrong with me and referred me to the neurology department at U.T. Southwestern Medical Center in Dallas.

symptomsIn the meantime, I started developing other symptoms. My limp got worse, I was developing stiffness and pain in the joints of my right hand, I was getting fatigued, a little dizziness, brain fog, and trouble focusing, and numbness and tingling in my face, neck, head, right arm, and sometimes down my right leg and foot. And to top it all off, my menstrual cycle (which has been very regular for the past 10 years) decided to hang around for 6-7 weeks and on one of the MRIs, they found I had an ovarian cyst!

So in addition to seeing a neurologist, podiatrist, and an orthopedic doctor trying to figure all this out, I had to get my gynecologist involved! It was ridiculous!!!

Thankfully, I was not in a lot of pain and was able to still function and take care of my family. In fact, I did not have any pain associated with my limp at all. It just looked bad when I walked – as I had injured myself.

Lyme Disease Diagnosis, Dysautonomia, MTHFR gene mutations

workflowBecause, it didn’t hurt to walk, I continued to work out. I was able to bike, swim, ellipse, do weights, and could even do some of those balance poses in my yoga class on my gimpy leg! Crazy – huh?

While waiting for my appointment at U.T., I did a lot of research on Lyme. So far it was the only thing that came back somewhat “positive” and although my Western Blot was technically negative, I did have band 41 show up as present and I wanted to know what that meant. If I don’t have Lyme, does that band mean I have something else?

I was able to find a doctor who specializes in Lyme in the Dallas/Ft. Worth area. He believed that I had Lyme after looking at my lab tests and reading through all my symptoms. However, he did not want to proceed with treatment until I saw the doctor at U.T.

After waiting for three weeks to see the neurologist at U.T. Southwestern, I was basically told that it was all in my head. He wanted to talk to me about my dreams and I guess because I told him that I had occasional nightmares, he concluded that I was depressed and needed to go to counseling and take antidepressants to help me with my concentration issues/brain fog. He also referred me to a gait specialist and recommended that I do another MRI even though he did not think I had any symptoms that would indicate M.S.

I asked him about getting tested for Lyme and why even though I got a negative Western Blot there was an antibody (Band 41) that was showing positive. He told me that he didn’t know much about that test, but it stated that it was negative and that I didn’t need to get a referral to an infectious disease specialist.

The whole appointment was so absurd that I almost started laughing! I had nothing more to say to that doctor and left his office trying to figure out what I would do next. All I wanted was someone to retest me for Lyme and was finding out the hard way, that getting that test was not going to be easy…

 

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