Tuesday, November 17, 2015

First Normal Exercise Session in 4+ Years

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. 

Saturday, October 31, 2015

Gone in a Heartbeat

So I realized that I haven't written a single update for the month of October and now the last day of the month is here. I think my last electrophysiology appointment really got to me emotionally. I always struggle after those appointments to accept that this won't get better and that I'm out of symptomatic treatment options for my autonomic dysfunction. I also found out that I've crossed over into a percentage of ventricular pacing (pacing for heart block) that puts me at increased risk of heart failure.

It was a lot to take in and I shut down. I've been keeping my mind blank. I'm living every day minute to minute and not thinking in advance because I don't want to let depression take hold. A few weeks ago I also lost Octreotide (the medication that's allowing me to eat without severe drops in blood pressure) and stopping that cold turkey almost sent me into an autonomic crisis worthy of the ER. I have since resumed Octreotide thanks to prompt action on the part of my cardiologist. I definitely feel better when I can actually eat and drink like a somewhat normal person.

In the midst of this, I came across a book called Gone in a Heartbeat by Dr. Neil Spector. Dr. Spector is an oncologist at Duke who was diagnosed with Lyme disease. His heart manifestations progressed to the point of requiring a heart transplant. He now seems to be doing well health-wise.

The book was scary to me at first. Many of his experiences with his heart were nearly identical to mine. Like me, he is also an avid runner. He runs often to relieve stress. His heart problems began with just tachycardia and skipped beats. His doctors blamed it on stress and didn't take him seriously. Eventually he caught an episode of VTACH and received an ICD/pacemaker. Soon after he started to develop heart failure. Dr. Spector was diagnosed with Lyme and treated with IV antibiotics (something I've never had), but surprisingly, the IV medications did not help in terms of his progressing heart damage. His cardiologist tried a biventricular pacemaker; that's what they will try with me if my ejection fraction has gone down next month. The biventricular device didn't help either. He then went under 10% heart function and needed a transplant which created another slew of complications.

Although this book does not delve into detail about Lyme disease, Dr. Spector does a great job of describing what chronic illness patients go through emotionally.......particularly those with heart arrhythmia's. The fear, the depression, the frustration about not having a curative treatment. He included a lot of insight from his unique perspective as both a physician and a patient. He mentioned how he used to hate when his colleagues would discuss patients that "failed" treatment. He felt like it puts the blame on the patient. That's 100% true. I constantly feel like a failure when medications don't work for me.....like I should be doing something to make them work. He also spoke of how doctors would abandon cancer patients because they couldn't handle caring for people who would not get better. I think that happens extremely often. I've been abandoned by multiple doctors. Most notably my first LLMD. It's a horrible feeling. Not only does it make the patient feel like a failure, but it makes them feel like there's no hope and they should just give up.

Dr. Spector also discussed the point in his life where he was depressed and didn't want to go on anymore. He fully understands the emotional toll that serious illness takes on people. In addition, he talks about many occasions in which he as a physician was not taken seriously when he had a medical concern. His doctors repeatedly blamed his symptoms on stress. One time a nurse completely disregarded a low battery alert coming from his ICD. As a patient, I've found that my concerns have been downplayed or ignored more often than not, but I would never expect doctors to treat other doctors the same way. I assumed doctors had it easier when they are the patient. I thought their colleagues would treat them with a higher degree of respect than an average patient with no medical background.

I really enjoyed reading this book. While it presents a case of severe and unusual heart manifestations due to Lyme that could create anxiety in some people, I see it as a realistic account of what people with serious illnesses go through physically and emotionally. I don't think I've ever read a book that depicts these factors so accurately.

Saturday, September 5, 2015


From the time I first got sick 4 years ago, I have nearly always had mild elevations of bilirubin. Bilirubin is a product of the breakdown of red blood cells. When it's elevated, you can develop jaundice. In my case, the elevations are usually very mild 1.1-1.3 with a range of 0.2-1.0. The last few weeks I've been trending upwards and I'm now at 2.3. Nearly double of my "normal." This change happened shortly after I stopped taking actigall (a medication which may have been preventing or treating gallstone formation) and started Octreotide (a medication known to CAUSE gallbladder problems in >60% of patients). I have been having fantastic results with Octreotide so I would like to do everything I possibly can to not have that medication pulled. It has been allowing me to eat without a severe drop in BP for the first time in years. It's one of the only medications out of countless trials that has given me a reliable way to help MYSELF out of a severe symptom set.

In the past, mainstream doctors have blamed Gilbert's Syndrome on my mild elevation of bilirubin. Gilbert's syndrome is a harmless genetic mutation and it affects the way that the liver processes bilirubin. There is no need for treatment, and the liver enzymes can be expected to remain slightly high and fluctuate in and out of mild jaundice levels from time to time. This sounds logical..........except, in my case neither parent nor my siblings have ever had increased bilirubin. I seem to be the only one.

Factors that increase the chances of your bilirubin going up are as follows:
  • Dehydration
  • Lack of sleep
  • Low calorie diet or fasting
  • Menstruation
  • Stress
  • Illness
  • Strenuous exercise
Increased liver enzymes are often associated with Erlichia as well. I do not test positive for Erlichia (but do for Babesia Duncani and Lyme). 
I've also been fluctuating in and out of normal range for BUN and my potassium is starting to drop as well.  It's very difficult for me to maintain fluid/electrolyte balance with all the medications I need to take, my salt intake for low blood pressure, the running I force to keep my BP up temporarily and the hot weather we've been having. I think that if I had gone to the ER or had access to an infusion center to get rehydrated when I clearly was dehydrated multiple times, I would have none of these abnormalities.