It's been a really really long time since I've written anything for this blog. Sadly, it's not because I'm feeling any better and have moved on or cured myself from Lyme or autonomic dysfunction. The past several months have been a health roller coaster for me. My mentality about the situation has shifted from fighting to try to find the next thing to try that will cure me, to trying to figure out how I'm going to live with these symptoms for the rest of my life through management techniques. I'm at the 5 year point. In many ways I'm no better than the day I was bitten. In some ways (particularly with my autonomic system) I'm a lot worse.
As far as Lyme treatment. I haven't given up, but I'm not sure if my LLMD feels the same way. I'm not feeling like there are too many doctors who have any hope left for me in terms of the resolution of my symptoms. I think we're all starting to think that I may have "reached the limitations of modern medicine" after trying years of herbs, supplmements and antibiotics. I prefer to be on antibiotics to off them. When I was off antibiotics and on herbs only for a year, was when my heart went into the 30's and stopped. I don't want to end up in a situation like Dr. Neil Spector. Eerily, his progression of heart symptoms is remarkably similar to mine. I will stay on antibiotics as long as I can.
For the past year I've been really immersing myself in exercise. I love running. I'm fairly good at it and it's one thing that I haven't wanted to give up despite being chronically ill. With severe hypotension, running sometimes feels next to impossible. My body reacts in the opposite way of normal. Instead of having an increase in blood pressure during exercise, my blood pressure drops. My heart rate either doesn't go up on it's own, or goes up really high and then tries to pause mid-exercise. Fortunately, now I have a pacemaker that can help me compensate for some of my heart abnormalities, but when it's not programmed correctly (which has happened many many times) it actually hinders me more than helps.
Over the past several months I've had a lot of scary instances with pacemaker-mediated problems. Most of this centered around a switch from CLS mode which was no longer working to warn me of low BP or increase my rate appropriately during exercise, to DDDR mode which chooses a rate based on movement instead of autonomic tone. I had very serious problems in DDDR mode which landed me an overnight stay in the ER due to being paced to 180 in the ventricle every time I moved, and several forced evaluations inside ambulances by well-meaning bystanders.
I've reached out to Biotronik headquarters requesting help from a rep in a territory with a high volume of autonomic dysfunction patients: Toledo, where Dr. Grubb is. The reps that I've had have never had a patient with my condition before by their own admission. The number of Biotronik patients in general within my territory is extremely small. After several years of this, I feel the least that the company can do is provide a phone consult from a rep experienced with autonomic disorders or one who has worked with a serious runner before. So far they have not arranged this. My local rep (whom I've never met because he has never come to one of my appointments in 2 years) emailed me and said he was talking to someone in Toledo. Then he didn't show up to the last appointment once again and sent a list of settings to someone else completely unfamiliar to my case. We decided instead to try a set of parameters that I brought in from Dr. Grubb's study. I'm highly dissappointed with the service I've gotten from Biotronik. The ironic promotional tag they use: #biotronikcares, is a total joke.
My doctor on the other hand, has been very helpful, and I'm almost never able to say that about a mainstream MD. He spent 6 hours at the hospital trying to fix the pacing problems himself. That's unheard of. He arranged an implanted port for me so that I can get myself out of emergency hypotension and avoid the stress of constantly having to fight with the ER. I am incredibly grateful for the port. He will probably never know how grateful, because I don't think I will ever be able to fully express to him the desperation I was feeling before the port. I would get so sick that I couldn't stand, eat, drink or keep down BP and heart medications........frequently. My BP either wouldn't register or would run in the 60's/30's range. After days of this when I'd finally admit I needed help and tried to get it from the ER or urgent care, they did absolutely nothing for me and wouldn't even call either him (my main autonomic specialist) or the autonomic neurologist that also objectively confirmed the seriousness of my condition through testing. Trying to imagine the rest of my life being like that was unbearable. I don't have the strength to fight for a bag of salt water when I'm already so sick. If this is lifelong, I need a lifelong way to manage it......myself. Going to the ER every time I need BP control help would be the equivalent of a diabetic going to the ER every time their blood sugar is out of range. I already struggle with feeling like a failure in many ways due to this illness. Having a port and a way to help myself with symptoms gives me back some sense of independence.
In the middle of this summer, another unexpected problem occurred. While I was out running (something I've attempted every single day for 5 years to maintain conditioning and increase my energy levels) my hip started to hurt. I got to the end and sat down to stretch it out. That was the last time I was able to stand on it for several months. The pain became excruciating and it was later confirmed that I had fractured my femur. I'm in week 10 of a 16+ week running ban. Losing running was a huge huge blow to me. It was literally the only thing I had left of my pre-illness self that I was good at. It's my anti-anxiety and depression treatment. It boosts my BP and gives me a 90 minute break from hypotension every day post-run. I was devastated and I'm not even sure how I've managed to avoid sinking into an immense depressive state. To top it off, I had no physical therapy advice except to "try a bike" via email. When I told my orthopedist after 8 weeks of trying as hard as I possibly could (15-30 miles a day) that the bike was too difficult for me due to plummeting BP, he responded that I should just imagine I don't have that problem. That had me in tears outside. Using the diabetic analogy again since that disorder is well understood, would this orthopedist tell a type one diabetic to imagine they didn't have it if they expressed to him that a bike exacerbated their low blood sugar and they were collapsing and having 911 called on them (like I was)?
I don't think that some doctors realize the impact that their comments have on patients that are already silently struggling to keep it together physically and emotionally. Chronic illness takes a tremendous toll on a person. It is really tough to get up each day and try so hard knowing that no amount of "trying" is going to cure my situation. Each day will be basically the same and hopefully not worse than the last. Each day will be a struggle. "Imagining" that I don't have my condition and living in denial will culminate in collapsing because I ignored my hypotension warnings. Ironically, I'll then end up in the ER where I'll be blamed for the "imagining" (attempts to live life like a normal person) that got me into the situation.
I think that some of the doctors I've encountered are the ones that are in need of some imagining. I urge all medical professionals to truly try to imagine life from your patient's perspective and realize that what you say has a tremendous impact on your patients even if they don't openly express this to you. Try to imagine what your life would be like if tomorrow you were struck with the same set of symptoms that your patients are experiencing, how you would cope with that situation, and what you would want your doctors to say (and not say) to you!
Tuesday, November 17, 2015
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
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.