Trip to Vermont

Last week I was fortunate enough to travel to Vermont for a beautiful wedding. This was my first time out east and the experience and people were wonderful. I’ll admit, I was nervous to travel. I wasn’t sure how I’d manage the plane rides or if my body would cooperate with my efforts in general.

Four years ago, before this whole POTS/Lyme Disease thing, I went on a trip from Wisconsin to Orlando, Florida with my family. We did it all: air travel, exploring our resort, walking for hours around Disney World, riding roller coasters, etc… I didn’t have a single issue. The Florida heat didn’t bother me. Walking and standing in lines for hours didn’t bother me. What was my symptom burden then? Zero.

Fast forward to today and I’ve literally had to step out of a long line at Qdoba because I was too hot and felt like I was going to faint. Granted, that was on a highly symptomatic day, but you get the picture. I thought, “If waiting for my burrito bowl at Qdoba is difficult, how am I going to make it through an out-of-state trip?” 

Well, I decided to do it. I’d been tolerating my trips to Qdoba fairly well lately ( 😉 ) and had my heart set on going, so I went.

I prepared myself well. I requested a full day off of work before the trip and dedicated it to rest. And, as a precaution, my Neurologist wrote me a medical note for airport security in case I was standing in line and felt like fainting. Thankfully, the lines were short and I didn’t have any issues. I also traveled with an incredibly patient and caring person who completely put me at ease.

I did it. It wasn’t a symptom-free trip, but I’m incredibly grateful that I didn’t have to leave one single event, activity, or restaurant early because of how I was feeling.

Vermont was absolutely gorgeous! I was impressed by the scenery, the abundance of unique restaurants emphasizing natural foods, and all of the friendly, laid-back people.

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I had to include this picture because it’s a good reminder that someone can look inconspicuously well on the outside, while not feeling so well on the inside. What’s interesting is that “illness” is defined as “a disease or period of sickness.” I know within my heart that what I have is just a “period of sickness.” It might take some time, but eventually I’ll get better. Optimism is key, right? 🙂

After talking to my Lyme doctor, she suggested starting treatment after the trip to Vermont. I’ve been taking the medication for the past five days now. I’ll update you all after a week.

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Lyme Disease treatment starts… Now!

In my last post I wrote that I’d create a second blog post regarding my Lyme Disease test results. Honestly, I’m exceptionally hopeful and happy today. This is a huge piece of the “medical puzzle” I’ve been trying to put together for the last several years. The connection between all of my recent test results are starting to come together.

I had an appointment with a LLMD (Lyme Literate Medical Doctor) today and she confirmed my test results were conclusive of a positive infection. Basically, I developed Hyperadrenergic Postural Orthostatic Tachycardia Syndrome as a result of having undiagnosed Lyme Disease. She explained that my immune system became run-down from the infection and it started affecting other areas of my body (such as my nervous system).

So, why did I want to test for Lyme Disease in the first place?
Two reasons:

  1. I noticed a significant trend in the amount of people I talked to who had POTS and Hyper-POTS along with Lyme.
  2. When I was younger it wasn’t unusual to find ticks on me because I lived in a heavily wooded area and I spent a lot of time outdoors. I recall frequently having bug bites from being outside, but I often ignored them. Did I experience the tell-tale “bull’s eye” rash along with a tick bite? I honestly don’t remember. I’ve had rashes, hives, small bites, and not-so-small bites and don’t think I would’ve even known what to look for at the time.

So, here are what my test results look like (sorry about the random note scribbling on the second page)…

IMG_1668-2B. Burgdorferi (or Borrelia Burgdorferi) is the name of the Lyme bacteria. This is the initial ELISA/IFA test, which is positive.

Now let’s see the results of the more specific Western Blot test…

FullSizeRender-2I’ve got four definite positives and four INDs, which stand for indeterminate. Basically, the test picked up that my body is producing some antibodies to 23-25, 34, 39, and 83-93, it’s just not as strong of a result as a full-on positive, as seen in 18, 31, 41, and 58.

So, the LLMD said she wants to start me out slowly on a treatment plan. I’m going to start an antibiotic, a probiotic, and a supplement for adrenal gland support. She said her estimate for my treatment will take 1 – 3 years to see the full benefits (and hopefully, a full recovery).

All I can think is: let’s do this!!

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