Long qt

I had a very scary incidence of long qt from the drugs I was taking for Lyme disease.

I spent several days in the hospital on the cardiac floor detoxing those meds out of my body.

This was back in November of 2019 so not quite a year has passed yet.

The cardiologist assured me it was drug induced. But and here’s the big but....I should not have another episode as long as I never take a drug that carries this risk.

So there is a huge list of prescription and over the counter meds that are now off limits to me to prevent another incidence of long qt. Just google for the list. My dr told me to always always tell my history to anyone prescribing meds to me. And to print the list so I don’t accidentally take an otc medicine that might cause it...such as Pepcid. This list is pages long. I am now at high risk of having another serious long qt incidence. If I ever need to be on a drug with the risk I need to be hospitalized for the duration of treatment on the telemetry floor where I would be hooked up to cardiac monitors and the nurses watch the heart around the clock.

This is no joke. I was lucky I went to the er that night. I thought I was just herxing and was not going to go. But I felt in such bad shape that I was hoping they could help with the herx by giving me some fluids to help with detox. My heart was racing so fast and I couldn’t catch my breathe. Turned out, no, I was not herxing but having a serious heart event called prolonged qt.

They tried to stop my heart 3 times to reset it but were unsuccessful. Trust me that was not pleasant mentally or physically. I was hooked up to cardiac paddles in case my heart stopped and would not restart. There were no less than 20 medical professionals working on me in the er at one time. So finally, what they did was put several bags of fluid going into iv and several nurses each squeezed a bag into me within minutes to flush the meds and try to lessen the crisis. It worked but it took days to be out of the woods. Very scary when the er dr tells you that you might not survive this crisis and they will do their best to help me.

I also now need to take a beta blocker to keep my heart rate from becoming tachycardic.

Please everyone. Be very careful about drugs with black box warnings. I trusted my very prominent Lyme specialist. But he had me taking over 5 of these drugs at once that cause the long qt risk. Over 5!!!! Never one word told to me about my risk!!! He almost killed me!!

I was very close to death. Very very scary. My er dr begged me to stop Lyme treatment for fear I would not make it back to the er the next time. And where I live Lyme is recognized and taken seriously by medical professionals so he understood what I was up against and how sick I had been with neuro Lyme. But. Prolonged qt can cause sudden death. I was very lucky to survive this. I shake uncontrollably even thinking about what happened that night. Trust me after that scare I am no longer treating Lyme. I cannot. The risk is too high.

So answer to your question. Yes. It goes away when drugs are removed. But you are now at a high risk for another event if you take another drug that carries that risk.
Be very careful.

I am very sorry if I sound dramatic or scared anyone. But I feel very strongly about letting others know how serious this can be. How serious some of these drugs prescribed to Lyme patients can be. How fast it can kill you or do permanent damage. Please everyone learn the drugs you are taking and the risks they carry and make informed decisions. I blindly trusted this Lyme dr and well I guess I should not have.