Please read. Important!!

This is quite long but please read.

I was hesitant to share this information because I do not want anyone to feel that I am telling them to stop their treatment. I have been treating for almost 4 very hard years and have had much improvement.

However 2 events due to treatment have forced me to stop.

First, last year, I was treating bartonella with a very well known and respected Lyme dr. (I will not name him so please don’t ask as I do not want to
Cause trouble. I know these drs are helping people and thankful I had gotten as well as I have) so, I was herxing very badly and not sure if my symptoms were from a herx or Bart or what. They were extreme sweating and when I mean extreme I mean every few minutes a sickening feeling came over me I wanted to throw up and then I would sweat profusely. This went on for over 6 months. I also had a racing heart. Also I am a type 1 diabetic and found I absolutely could not control my blood sugar no matter how much insulin I took. I also had flu like syndrome and wasn’t sure if that was from herx or the meds. I was taking rifabutin among other things. Then one night I felt so bad that I went to the er and found my blood pressure was dangerously high. I spent a few days in the hospital and still now to this day I take blood pressure meds. Two of them.

I stopped treatment and a month later the sweating stopped and blood sugar control was happening again.

So I felt good for a bit. Then it all crashed. So I started treatment again. First to get babesia back under control and then onto Bart. I was taking rifabutin again along with several other antibiotics including flagyl and diflucan and methylene blue. Also still cleaning up Babesia. All in all I was pulsing over 8 prescriptions and a few herbals.

Then after the first round meaning a week and a half of treatment I went to bed. I was done that round and felt awful. My stomach was in bad shape and I felt non stop severe nausea from the first pill onward. So I was taking zophran to help with that. I woke at 1 in the morning with my heart racing. It was 114 at rest. My husband tells me your herxing. Let’s detox and go back to sleep. Which I did. Then I woke two hours later again to a racing heart. This time over 160 resting.

Off to the er. Where I find out that not only was my heart racing but I was having prolonged qt syndrome. Meaning both the top and bottom of my heart were beating at the same time. This is deadly. The heart can just stop and a person with this dies with no warning. Why did I have this?? Well 5 of the antibiotics and zophran have this listed as a warning. 5!!! The er dr tells me that they hesitate to prescribe 1 with this risk. Taking 5 I was a walking time bomb.

My dr never told me this risk. Yet put me in this danger. I thought I was herxing and only went to the er hoping they would pump me with fluids and help the herx.

Oh they pumped me with fluids alright but only after they tried 3 times unsuccessfully to reset my heartBeat. How do they do this??? By giving you drugs to stop your heart. Very serious and very scary.

After 3 failed attempts they literally hung two bags of iv fluid and squeezed it in as fast as they could to flush me of these drugs to attempt to restore a normal heart rhythm.

I spent a few days in the hospital hooked up to heart monitors to watch that I was ok and continuous iv fluid at a very fast rate.

Now because of this I have to be very careful about any medicine prescription or not that has prolonged qt as a side effect because once this happens I am at a huge risk for a repeat.

I don’t mean to scare anyone. I just felt that I needed to share my story so no one else finds themself in such a serious situation.

I am still in the anger phase at my dr. And I’m working very hard to contain the health anxiety I now have.

Please everyone. Look up the drugs you are prescribed. Look at the black box warnings. Look at the side effects. Quiz your dr every which way you can. And most importantly. If you feel you are herxing or feel so terrible that your gut is scared. Please go to the er right away. I know sometimes Lyme patients get treated poorly at the er and we hesitate to go. But I’m glad I did. They saved my life not once but twice. I never got the eye roll or any denial of Lyme. I just got concern and excellent care.

Post Edited (joee) : 11/24/2019 10:34:48 PM (GMT-7)

Here’s a site with a list of drugs that can exacerbate an existing issue and possibly cause one

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc3653016/#!po=0.602410

Girlie
I called to cancel my next appt. I tried to explain to the receptionist that I needed to speak with the dr about an urgent matter related to my needing to stop treatment. I have yet to hear back. It’s been a week. Sigh.
The whole experience has left me terribly shaken. So for now I must let it rest and try desperately to put this behind me so I really can’t (mentally) keep after them. Honestly, right now I am in a very fragile mental state regarding health anxiety. I long to shut the door on Lyme and co and never look back. Wishful thinking for all of us I know. But I still am battling with tachycardia even with my blood pressure meds doubled so I am trying to stay relaxed to let my nervous system calm down. I have dysautonomia, I just can’t battle or argue if the dr puts up a fight or denies responsibility.

The er dr was horrified at the drugs I was given. ( I took my treatment plan with me that night and handed it over to them thankfully I did because they immediately knew what was driving the prolonged qt) He came back later after I was stable to chat and explain my situation. Asked if I knew the sanctions that had been placed on the dr in the past. I wonder if this dr at the hospital can file a complaint To the medical board. I will not file but not sure who else can.
The whole situation is awful.

Post Edited (joee) : 11/25/2019 3:08:02 AM (GMT-7)

Hi quin
No my diabetes did not resolve. I have been a type 1 insulin dependent diabetic for so many years prior to Lyme disease. They are not related.

joee,

I am so sorry for what you’re going through. Praying you will find peace in the midst of all this trauma and fear and will find the right way to reset your body to heal.

Thank you for coming here to tell others what happened. It’s important. I think many times doctors fail to warn patients of side effects and adverse events that they view as rare - meaning they haven’t had any patients under their care experience those events.