Today I woke up very symptomatic, like most days. I had immense overall weakness in my limbs, flu-like fatigue and aching, dizziness, muscle weakness and severe nausea from very low blood pressure due to autonomic nerve damage from Lyme disease. I was having a hard time standing even to just get to the bathroom. I knew once I could get my meds on board I'd have a chance to turn things around. I've been keeping all my meds and a bottle of salted water within arms reach of my bed lately because sometimes it's impossible for me to get to it otherwise.
I had so much to do today, but in order to function I have to get my BP up and the only reliable way I can do that is to go running. I maxed out on midodrine, mestinon, octreotide and my beta blocker and headed to the trail where my heart decided to flip out and jump up to 187. It was very hard to stand as I began pouring sweat and gagging from nausea. I waited it out and forced some running like I do every single day. Normally I'm forced to stop every 1/10 of a mile due to low BP symptoms. Today, thanks to increased IV glutathione this past week, I was able to start running and complete 3 miles without stopping!!! It's the first time in 4 years. I was also able to do shorter continual distances several times over the weekend.
Is this a cure? Am I getting better? No. It's purely the temporary result of IV vitamins which are likely detoxing my body and helping with potential malnourishment. However, I am so grateful to have a little symptomatic relief.
I've been worsening overall for months. I had a setting changed on my pacemaker several months ago to keep my heart rate up during exercise. I haven't even been able to test out that setting because my BP has been so poorly controlled. Finally today I could. I ran for an extended amount of time and the advanced setting kept my heart rate up appropriately.
In other news, my 2nd echocardiogram was a few weeks ago. It was done to assess for signs of heart failure because I am requiring substantially more pacing than was predicted. Desynchronization of the ventricles can lead to damage in some cases. Within an hour of the echo, my EP's office called to tell me I was in the clear for now. My ejection fraction is 57%.
I've noticed the past few weeks that my arrhythmias are returning. Since the pacemaker, my heartbeat had been pretty regular but lately it's getting irregular again and fast as well (up to 204) in episodes away from exercise. I think that my beta has lost effectiveness. I'm undecided about whether I should switch, go off it or just keep taking it. I don't know that my BP can handle increasing the dose.
My Lyme treatment has remained the same. I'm on a popular babesia duo alongside additions of colostrum and My Community mushroom tincture this month. My lymphocytes have been very low and BUN is headed out of range again. Surprisingly I seem to be herxing fairly severely on the mushroom tincture with mood instability, exhaustion and fevers.
I'm still able to eat what I want thanks to octreotide although I'm concerned that I can't seem to gain any weight despite this. This medication has dramatically improved my quality of life. I was really getting to a state of hopelessness the last few months. Being able to eat and temporarily feel better from IV vitamins had literally been a physical and emotional lifesaver for me.