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!