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  • Lyme Lens

How a negative = a positive...

Updated: Jan 8, 2019

So, I have been suffering from tachycardia (fast heart rate) for a long time now. I would say it has been at least a year or more and it is so bad that it keeps me in bed 24 hours a day. I only get up to go to the bathroom or to stagger to the back seat of my mother’s car if I have a doctor’s appointment. She drives me to my appointments and I lie down to keep my heart rate as low as possible.

I have seen a cardiologist for this affliction and he originally believed it was due to my thyroid issues (which were being worked on at the time), some weight that I had gained secondary to the thyroid and lastly due to inactivity. I was in complete disagreement with him as I could be lying in bed with a heart rate of 110 and suddenly it would spike to 150 and I would be covered in sweat as my heart pounded out of my chest. I knew something was wrong.

He had me wear a Holter monitor for 24 hours and undergo a chemical stress test but both were negative for any proven cardiac condition causing my tachycardia. He threw some medications at me and told me to follow up with him in 3 months. My primary care doctor was also following me pretty closely regarding this issue so she had already tried one medication on me called metoprolol. He now switched me to verapamil. This drug was a nightmare. Not only did it do nothing to lower my heart rate but it managed to increase my blood pressure which I have never had problems with in the past.

My primary doctor and I decided it was time to go back on the metoprolol, increase the dose, get another opinion and I started pushing for a Tilt Table Test. This test is something I had read about many years ago and it is used to prove that you have a disease called POTS (postural orthostatic tachycardia syndrome). She agreed that it was a reasonable request so we scheduled the test at the hospital. This disease, POTS, can be a primary or secondary condition. Most cases are secondary which means they have been caused after a person has been either subjected to a virus, a bacteria (like Lyme Disease), an autoimmune disease, a trauma or a surgery ~ all of which has left some lasting effect on their sympathetic or parasympathetic nervous system altering their heart rate.

In most cases, the patient goes from a lying to a standing position and their blood pressure drops 30mmHg causing them to get extremely dizzy and pass out. As a compensatory mechanism, the heart rate increases trying to improve the blood pressure but the patient has already collapsed to the floor. You can imagine that this is a very dangerous condition to have because you must spend your entire life supine or else you will pass out every time you stand up. Thankfully for me, my blood pressure never seems to be affected but whenever I stand up and try to do anything, I instantly become severely tachycardic, begin to sweat, get nauseous, become dizzy, start to lose my hearing like I am under water, become extremely clumsy, feel my heart pounding in my chest and eventually become short of breath if I do not sit down and stop moving. This all happens in a matter of minutes.

So, I went to my test expecting that I would be placed on the Tilt Table and as soon as my symptoms began they would make note of the changes and the test would be over. Boy was I in for a rude awakening! Let me preface this by saying that I have two very bad knees. They began to get arthritic over a year ago and now when I bend them you can hear the “ground glass” sound under my kneecaps from across an exam room. I walk with a cane and take daily pain medication just to tolerate having blankets on my legs in bed. I am bedridden so bad knees are usually not a big concern. They were that day…

When I got strapped to the table, the first thing I misunderstood was that I was going to be put up to an angle of 80 degrees ~ not 45 like I had read on the internet ~ so I was basically standing straight up on my feet with full weight bearing on my sore knees. I had no cane to brace myself because four large straps were tying me down to this table with my arms at my sides. I instantly began to sweat as my heart rate did its typical climb into the heavens. I thought to myself, “You have withstood five spinal taps and not shed a tear. You can handle this.” Then I asked the technician sitting with me who was watching the monitors, “So, ummm, just how long do I have to stand here in this thing?” She nonchalantly replied, “Oh nobody told you? You stand there for the FULL HOUR or until you absolutely can’t take it anymore.”

The full hour? I hadn’t stood up for longer than ten consecutive minutes in over the past year!!! How in the hell was I going to stand there for an hour? I knew how important this test was. I knew that there was so much riding on the results of this test and I had been the one to ask for it in the first place. How could I punk out of it in the first ten minutes because my knees were on fire? My hands and feet had pins and needles going through them like some kind of Vietnam War POW prison camp torture, I had sweat pouring between my breasts in rivulets that I couldn’t stop because my arms were tied down and all I could do was stare at the same spot on a curtained room divider or else I would burst into tears of excruciating pain. I counted each time the blood pressure cuff went off because it meant two more minutes had passed and I had only 14 more inflations to go, then 13, then 12….no wait….false reading it is pumping up again… aaaarrrrggghhhh!!!!!

I was so close to the end when at 52 minutes the blood pressure cuff started to inflate and deflate. Inflate and deflate. Each time leaving red streaks on my upper arm as the teeth of disposable latex, jaws-of-life, extra large, too big for my petite arm, blood pressure cuff cut into my raw skin after the 30+ readings I had endured throughout the duration of this test continued. Come to find out, my blood pressure had remained stable throughout but I was informed I had sustained a heart rate of 167 for well over 40 minutes of the test but the doctor had continued simply to see IF my blood pressure would change. Then came my warning in a voice that even I did not recognize, “If you cannot fix that damn cuff, this test is OVER. I have reached my breaking point now.” She tried one more time, inflate, deflate, inflate, deflate and then it was over. I told her that I wanted a witness to my claims about my heart so I made her lay me down while still strapped to the table and within 2 minutes, my heart rate had returned to the 70’s. She documented it and kept the cardiac machine running to prove what had happened. Finally, I had medical evidence to back up what I had been saying for years.

As I crawled off my cross and into the wheelchair, I was totally spent. My mother rolled me outside the hospital and I burst into tears. Getting through that test had been one of the greatest challenges I had faced in a very long time. I went home and slept for the next 24 hours. What do I mean by how a negative equals a positive? Well, I failed that test for sure but I positively have POTS disease according to the doctor’s report.

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