A year ago today, I first experienced heart block due to Lyme Carditis while playing basketball. I've described the ordeal working through just the diagnosis of tick-borne diseases already, but I have been extremely reluctant to post on my treatment even now, a year after this kicked into high-gear.
"Why is that, why won't you go into your treatment?", you may ask. Well, the treatment has been very controversial and I am very concerned about sharing details of my treatment and dealing with severe blowback. Am I over-reacting here? No, I don't think so - I've already lost relationships with medical providers during diagnosis and I really don't want to mess up what I've got right now in treatment. I have some privacy concerns, too; the side effects of treatment are often not appropriate to share in the moment. I do plan to describe treatment in detail when I come through it all - perhaps another six to twelve months.
What I can share though is that the treatment covers changes in diet, exercise and sleep, a set of prescription medication and herbal supplements all taken on a very complicated schedule, and frequent monitoring. Basically, I remember at all times where I am in treatment and if I fail to execute my treatment even slightly, my health usually suffers for it very soon after.
I can also share that the treatment is working; I have made progress and I hope it continues. My heart continues to function like a champ, so my pacemaker isn't pacing, though it is ready to kick-in if things go sideways, and it continues to gather metrics. Speaking of metrics, I have many metrics to show improvement: blood counts are getting better, weight is pouring off me - I've lost 30lbs so far, my resting heart rate is in the 50s, and I ran a 7:40 mile - I haven't done that in easily 25 years. And when I play basketball nowadays, I feel like I'm effortlessly flying up and down the court with new speed and agility, and that's a very long way from December 10, 2015.
Saturday, December 10, 2016
Sunday, July 17, 2016
In the news... Johns Hopkins
In case you missed it, Johns Hopkins launched the first major US medical center to study Lyme Disease! As I learn more about this center through the article and the center's website, I find myself evaluating the center against the following truths that I realize based on my recent experience working through Lyme Disease and other tick-borne diseases.
(1) Lyme Disease is one of several diseases that are transmitted by ticks in the mid-Atlantic region. These nasty little bugs can transmit Lyme Disease, Ehrlichiosis, Anaplasmosis, tick-borne encephalitis, and Babesiosis. None of these is a good time and at least one can be fatal, and furthermore, a single tick bite can cause several of these all at once!
(2) Tick-borne diseases can be very difficult to diagnose.
(3) Tick-borne diseases can be very difficult to treat.
(4) Many medical professionals refer to Lyme Disease symptoms that persist after 2-4 weeks of treatment per CDC guidelines as "post-treatment Lyme Disease syndrome". Keep in mind that if any of the tick-borne diseases are indeed present after treatment, it can be difficult or impossible for a medical professional to distinguish those from "post-treatment Lyme Disease syndrome". In a nutshell, this diagnosis is the way many medical professionals reject patients who need continued help.
Before going further, I feel compelled to clarify that I have not worked with anyone affiliated with the medical center - they are not Dr Lyme#[1,2,3]. That said, here's what I think.
On one hand, I'm glad that the pursuit of understanding Lyme Disease is becoming a priority and that significant funding is available. It should be a good thing to some degree for the Maryland economy, too. And I love Maryland.
On the other hand...
The center deals only with Lyme Disease. Those other tick-borne diseases will not be covered apparently. I understand that Lyme Disease is the higher priority, but I am disheartened because there is no mention of tackling these other diseases at all.
With its initial grant, the center will gather information about the impact of Lyme Disease on the immune system and the causes of "post-treatment Lyme Disease syndrome". I find this approach disheartening very much because it does not prioritize the major problems with both diagnosis and treatment for suffering patients. Also, I am somewhat disheartened to learn that such analysis is not already available, at least from a major US medical center. <sigh>
The center promotes the "post-treatment Lyme Disease syndrome" paradigm and it does not perform "treatment studies" even for those with the controversial diagnosis. So yes, for me, a medical center that is geared toward Lyme Disease research but does not perform treatment beyond CDC guidelines - as research - is disheartening.
The leader of the center states that "post-treatment Lyme Disease syndrome" is not fatal - I just don't know how such a statement could be made at all in the first place. The statement promotes a false certainty in a problem space that is not completely understood right now, hence the need for research at the center. The statement implies a limit to the patient pool - that only those with the controversial "post-treatment Lyme Disease syndrome" diagnosis are considered, while those without the diagnosis are excluded. Anyway, the timing... making such a controversial statement while announcing the initial grant, well, at best that doesn't seem to be a good idea.
And then I think a bit more about the publicity and how it will likely draw to the center people who are looking for medical help to resolve tick-borne diseases that do not resolve within guidelines in diagnosis and/or treatment for Lyme Disease, and I am disheartened at the experience that may await them there.
Hopefully, the research performed at the center will lead to addressing all manner of tick-borne diseases and the problems with diagnosis, treatment and "post-treatment Lyme Disease syndrome", but right now, it looks to me like that would take a very long time due to its other defined priorities.
(1) Lyme Disease is one of several diseases that are transmitted by ticks in the mid-Atlantic region. These nasty little bugs can transmit Lyme Disease, Ehrlichiosis, Anaplasmosis, tick-borne encephalitis, and Babesiosis. None of these is a good time and at least one can be fatal, and furthermore, a single tick bite can cause several of these all at once!
(2) Tick-borne diseases can be very difficult to diagnose.
(3) Tick-borne diseases can be very difficult to treat.
(4) Many medical professionals refer to Lyme Disease symptoms that persist after 2-4 weeks of treatment per CDC guidelines as "post-treatment Lyme Disease syndrome". Keep in mind that if any of the tick-borne diseases are indeed present after treatment, it can be difficult or impossible for a medical professional to distinguish those from "post-treatment Lyme Disease syndrome". In a nutshell, this diagnosis is the way many medical professionals reject patients who need continued help.
Before going further, I feel compelled to clarify that I have not worked with anyone affiliated with the medical center - they are not Dr Lyme#[1,2,3]. That said, here's what I think.
On one hand, I'm glad that the pursuit of understanding Lyme Disease is becoming a priority and that significant funding is available. It should be a good thing to some degree for the Maryland economy, too. And I love Maryland.
On the other hand...
The center deals only with Lyme Disease. Those other tick-borne diseases will not be covered apparently. I understand that Lyme Disease is the higher priority, but I am disheartened because there is no mention of tackling these other diseases at all.
With its initial grant, the center will gather information about the impact of Lyme Disease on the immune system and the causes of "post-treatment Lyme Disease syndrome". I find this approach disheartening very much because it does not prioritize the major problems with both diagnosis and treatment for suffering patients. Also, I am somewhat disheartened to learn that such analysis is not already available, at least from a major US medical center. <sigh>
The center promotes the "post-treatment Lyme Disease syndrome" paradigm and it does not perform "treatment studies" even for those with the controversial diagnosis. So yes, for me, a medical center that is geared toward Lyme Disease research but does not perform treatment beyond CDC guidelines - as research - is disheartening.
The leader of the center states that "post-treatment Lyme Disease syndrome" is not fatal - I just don't know how such a statement could be made at all in the first place. The statement promotes a false certainty in a problem space that is not completely understood right now, hence the need for research at the center. The statement implies a limit to the patient pool - that only those with the controversial "post-treatment Lyme Disease syndrome" diagnosis are considered, while those without the diagnosis are excluded. Anyway, the timing... making such a controversial statement while announcing the initial grant, well, at best that doesn't seem to be a good idea.
And then I think a bit more about the publicity and how it will likely draw to the center people who are looking for medical help to resolve tick-borne diseases that do not resolve within guidelines in diagnosis and/or treatment for Lyme Disease, and I am disheartened at the experience that may await them there.
Hopefully, the research performed at the center will lead to addressing all manner of tick-borne diseases and the problems with diagnosis, treatment and "post-treatment Lyme Disease syndrome", but right now, it looks to me like that would take a very long time due to its other defined priorities.
Monday, July 11, 2016
Medical appointments...
A medical appointment can be overwhelming. Typically, there's a some administrative work - like scheduling the appointment and adjusting work and life to accommodate, arranging payment through insurance and co-payments and sometimes filling out new patient forms. Once behind the desk, basic health info is gathered like weight, height, temperature, blood pressure, pulse and usually the physician's assistant who collects this info wants to chat about symptoms and understand the reason for the appointment. After all this, the patient finally meets with the medical professional.
For me, meeting with the medical professional was generally a relief - like I had made it and everything will be just fine now - the medical professional will take care of me.
But after several suboptimal appointments, ones where I had forgotten to ask something or I wasn't exactly clear on what was supposed to happen next, I had come to realize that I needed to participate in appointments more assertively and more consistently and I needed to objectively change how I was handling my appointments. I needed to set up some sort of plan... and here's what I came up with.
For me, meeting with the medical professional was generally a relief - like I had made it and everything will be just fine now - the medical professional will take care of me.
But after several suboptimal appointments, ones where I had forgotten to ask something or I wasn't exactly clear on what was supposed to happen next, I had come to realize that I needed to participate in appointments more assertively and more consistently and I needed to objectively change how I was handling my appointments. I needed to set up some sort of plan... and here's what I came up with.
- Determine a purpose for the appointment based on symptoms, "I am here because I am experiencing <symptom X>.". This helped me and my medical professional start off in the right direction. And I try very much to keep this statement in plain English.
- Maintain a history or list of symptoms and treatments - like a timeline or schedule. Handing over a hard copy might be nice. Dr Lyme#3 actually required this as part of my initial new patient packet. I continue with a daily list of treatments and symptoms and we go over this information during my appointments. The timeline has helped me to understand what has happened and to identify trends, so I can recognize treatments that work better for me.
- Determine expected outcomes or decisions, "I expect answers to a list of questions, or a diagnosis regarding <symptom X>, or follow-on tests to help determine a diagnosis, or interpretation of test results, or a treatment plan, etc." Without this, I would tend to drift through the appointment.
- Determine expected next steps, "I expect a treatment plan, necessary prescriptions and a follow-up appointments, referrals for specialists, etc." On a related note, my medicine schedule got pretty complicated and it was easy to miss a detail even with the prescription handy - believe it or not, prescriptions are sometimes not very clear. So I would go through each treatment to understand what the remedy was called, how much I should take and when I should take it - and write all that down.
- Hold on to diagnostic test results, not just the interpretation. So often I would rely on my medical providers to manage the results or to just sum it up, but that became a problem when I started working with multiple medical providers who needed access to test results and when I wanted to research on my own. Tracking hard copies can be really difficult and time consuming, but fortunately nowadays most medical providers offer online services and HIPPA compliant disclosure to other medical providers, and sometimes medical providers share the same system so there's no need to schlep paperwork around - all of this helps a bunch.
For me, I would write all this down as bullets in a document on my phone beforehand, so I could easily review it while in the waiting room and add feedback from my medical provider during the appointment. It might be better to have good ol' pen and paper - personal preference, perhaps.
One last thing, I try very hard to avoid all those nice magazines and TVs in the waiting room - they are a total distraction. Instead, I try to focus on setting my frame of mind - that I need to contribute to the appointment - and reviewing my bullet points. Sounds boring, but it helps.
Tuesday, June 14, 2016
Multiple opinions...
A friend of mine, a medical professional with a pacemaker actually, recently assured me that mine is not an isolated case, that medicine is extremely difficult and available information is often incomplete and sometimes open to interpretation even amongst trained and experienced medical professionals. This disparity could occur not just in the diagnosis, but also the uncertainty of the diagnosis.
I think back to Dr Lyme #1's diagnosis of irreparably bad wiring - either due to genetics or cured Lyme Disease (LD). His diagnosis was based on his certain, but mistaken, belief that heart block always resolves quickly and completely with the antibiotic treatment I had taken. And though Dr Lyme #1 actively avoided direct discussion with me thereafter, in March he did discuss with my GP my continued poor health and more specifically the bullseye rash and increase in IgG results. Dr Lyme #1 made no change in diagnosis or treatment; he stuck to his diagnosis of irreparably bad wiring and no extended treatment.
Dr Lyme #2 considered my history as Dr Lyme #1 had, including the continued poor health, EM rash and increase in IgG results. Dr Lyme #2 acknowledged that heart block due to LD, more specifically referred to as Lyme Carditis, resolves completely with antibiotics, but sometimes not so quickly - that additional treatment is necessary for some rare cases. Cases like mine. Dr Lyme #2 diagnosed tick borne disease impacting multiple systems, not just my heart. Dr Lyme #1 and Dr Lyme #2 had the same information, but made significantly different diagnoses and different recommended treatments: none vs continued antibiotics for perhaps another four weeks or so.
By the time I had met with Dr Lyme #3, it became known that my heart block had resolved - clearly indicating LD, as nothing else presents like that. Dr Lyme #3 came to a similar diagnosis as Dr Lyme #2 - tick borne disease impacting multiple systems, but his recommended treatment was overwhelming in comparison to that of Dr Lyme #2: one type of antibiotic for perhaps another four weeks vs multiple types of antibiotics and other medications to kill germs, plus practices and remedies to clear toxins from my body - all for a much longer period.
I think back to Dr Lyme #1's diagnosis of irreparably bad wiring - either due to genetics or cured Lyme Disease (LD). His diagnosis was based on his certain, but mistaken, belief that heart block always resolves quickly and completely with the antibiotic treatment I had taken. And though Dr Lyme #1 actively avoided direct discussion with me thereafter, in March he did discuss with my GP my continued poor health and more specifically the bullseye rash and increase in IgG results. Dr Lyme #1 made no change in diagnosis or treatment; he stuck to his diagnosis of irreparably bad wiring and no extended treatment.
Dr Lyme #2 considered my history as Dr Lyme #1 had, including the continued poor health, EM rash and increase in IgG results. Dr Lyme #2 acknowledged that heart block due to LD, more specifically referred to as Lyme Carditis, resolves completely with antibiotics, but sometimes not so quickly - that additional treatment is necessary for some rare cases. Cases like mine. Dr Lyme #2 diagnosed tick borne disease impacting multiple systems, not just my heart. Dr Lyme #1 and Dr Lyme #2 had the same information, but made significantly different diagnoses and different recommended treatments: none vs continued antibiotics for perhaps another four weeks or so.
By the time I had met with Dr Lyme #3, it became known that my heart block had resolved - clearly indicating LD, as nothing else presents like that. Dr Lyme #3 came to a similar diagnosis as Dr Lyme #2 - tick borne disease impacting multiple systems, but his recommended treatment was overwhelming in comparison to that of Dr Lyme #2: one type of antibiotic for perhaps another four weeks vs multiple types of antibiotics and other medications to kill germs, plus practices and remedies to clear toxins from my body - all for a much longer period.
So, you see what I mean, the same information - test results, history and symptoms and whatever else - can be interpreted differently in terms of the diagnosis and uncertainty. That's just the way it is, but it is up to the patient to evaluate the diagnosis and uncertainty and ensure that all makes sense. If it doesn't, the patient needs to speak up and keep moving, otherwise things might not turn out well at all.
Thursday, June 2, 2016
Actively working...
Over more than three months, I had been actively working to understand why my health continued to fail.
I worked with my medical team - literally dozens, perhaps over a hundred, professionals with countless years of experience and a vast array of knowledge. They ran several types of diagnostic tests, blood work and imaging. They monitored me closely for nearly two weeks solid at rest and under exertion. They performed surgery to place a pacemaker and rushed me to the ER during a blizzard. They administered medicine: serious antibiotics via IV over four weeks and shortly thereafter, blood thinners and additional medicine. They tried very hard, no doubt.
I gathered information from CDC, Wikipedia, online medical journals and books to learn about potential causes, risks and realized, drastic outcomes.
I connected with my family and friends for support. Aside from the emotional support in and out of the hospital and the physical support to pick up where I was unable, they provided mental support to help me evaluate facts, probabilities and next steps as my mind floated through the haze of my condition.
Overall, I was actively working to solve this problem. And yet, it took over three months. And I'm not going to tally the prior years of effort in dealing with growing symptoms that remained misdiagnosed until March 2016.
Anyway, I believe that actively working on my health condition was key to my diagnosis, however delayed it may have been. If you are working through a similar situation, you should consider picking up some of the same approaches. And if you have any other recommendations that may help me or someone else, please leave a comment. That'd be real nice.
Saturday, May 28, 2016
What happened?
December 10, 2015
I have always been active. In my youth, I played soccer, baseball and basketball and I swam and ran competitively, too, but now I'm 44 and I should probably slow down a little. But that's been pretty hard for me to do. Just a few months ago I hung up the cleats after a dozen years playing indoor soccer - got too banged up, too frequently and for too long. Before I knew it, I filled the void by coaching my daughter's soccer team and my sons' ice hockey team. And I continued playing basketball every week with the guys at the local high school - that's a great time.
Tonight, we have good height - probably four others around my size, so I won't have low post obligations - I'll be free to take my 6'-5" 240lb self all over the court. We've played for 45min and I'm working hard and having a blast, soaked to the bone. Quick... gotta transition up court, we've got a fast break... wait, what's happening to me... my vision is falling under a shadow, like a closing tunnel and I'm about to fall. I bend over for a second, my hands pulling on my shorts at my knees to help keep myself upright. OK, better. That was odd. Oh well... better get back on defense, wait, it's happening again, but I realize it only happens on exertion. I know, I'll just walk this thing off and I'll be fine - for tonight perhaps. And so it is. I walk the remainder of the game and not think much more of it. The first mistake of many to come.
December 12, 2015
I think I know what's happening to me. I had missed my weekly run for the last two weeks or so - I must be out of shape, that's it. I'm out of shape and I need to get back into shape. It's a nice day for a nice run through my nice neighborhood. I'm going to do this. Dress, stretch and tie my shoes - don't need my heart monitor today, I love metrics, but I'll just take it easy today, so no need to see that I'm taking it easy - I'm off!
Walking, walking, walking - trail is one mile from my house. Walking, walking, walking - no symptoms. Walking, walking, walking - and here I am at the trailhead! I'm motivated. I'm gonna run this flat trail for a mile out and a mile back, nice and easy pace. Check the time and distance - go! After about 10sec, I'm not feeling very good here... I need to work through this, suck it up, just do it. After another 5sec or so, this isn't getting better. After another 5sec or so, it's getting worse, I can't believe this… the shadows are back and I'm about to fall. I bend over for a second, my hands pulling on my shorts at my knees to help keep myself upright. I feel for my pulse, hardly feel it, but I'm wiped out. Odd. I'd better call it a day and head back. Yes, that's the plan. Walking, walking, walking... uphill now, didn't notice the slope so much on the way out. It's happening again, the shadows. I wait a minute or so, feel better, then resume. Walking, walking, walking - nearly home, better get home as soon as possible, so I take the shorter path up the steeper hill. Walking, walking, walking - up the hill. It's happening again - that's three times in the past 15min. I check my pulse with my watch - really 72bpm?! That's not right, should be around 120bpm at least. I take it easy and make it home. That's enough for today. Wish I had worn my heart monitor.
Walking, walking, walking - trail is one mile from my house. Walking, walking, walking - no symptoms. Walking, walking, walking - and here I am at the trailhead! I'm motivated. I'm gonna run this flat trail for a mile out and a mile back, nice and easy pace. Check the time and distance - go! After about 10sec, I'm not feeling very good here... I need to work through this, suck it up, just do it. After another 5sec or so, this isn't getting better. After another 5sec or so, it's getting worse, I can't believe this… the shadows are back and I'm about to fall. I bend over for a second, my hands pulling on my shorts at my knees to help keep myself upright. I feel for my pulse, hardly feel it, but I'm wiped out. Odd. I'd better call it a day and head back. Yes, that's the plan. Walking, walking, walking... uphill now, didn't notice the slope so much on the way out. It's happening again, the shadows. I wait a minute or so, feel better, then resume. Walking, walking, walking - nearly home, better get home as soon as possible, so I take the shorter path up the steeper hill. Walking, walking, walking - up the hill. It's happening again - that's three times in the past 15min. I check my pulse with my watch - really 72bpm?! That's not right, should be around 120bpm at least. I take it easy and make it home. That's enough for today. Wish I had worn my heart monitor.
December 13, 2015
I'm going to work through this myself. I'll hit the treadmill at the rec center while my boys have swim practice, but this time I'll be prepared with my trusty heart monitor. I think my heart rate isn't where it should be, but at least today I'll be able see what's going on, and that makes me feel safe.
Boys are swimming and I'm walking... looking good, 4mph for 10min and my heart rate is at 110bpm. Let's see what happens at 6mph... ok, 120bpm, whoa it's happening again... 63bpm?!?!?! That can't be. Check my pulse and watch - yep, that's about right - the sixties. I should be around 130bpm, maybe 140bpm. That's it. I'm done. I've seen enough. I'm going to get professional help. Tomorrow. That seems to be the correct urgency.
Boys are swimming and I'm walking... looking good, 4mph for 10min and my heart rate is at 110bpm. Let's see what happens at 6mph... ok, 120bpm, whoa it's happening again... 63bpm?!?!?! That can't be. Check my pulse and watch - yep, that's about right - the sixties. I should be around 130bpm, maybe 140bpm. That's it. I'm done. I've seen enough. I'm going to get professional help. Tomorrow. That seems to be the correct urgency.
December 14, 2015
I call my doctor first thing. "Yes, that's right - heart trouble... Yes, I can be there in 30min." At the doctor's office, I explain the goings-on and my doctor hooks me up with electrodes to perform an ELECTROcardiogram (EKG or ECG - take your pick, either is an acceptable acronym, btw - and this is not the same as an ECHOcardiogram). But you know, the problem only happens when I sprint or jump or walk up a hill - you know, exert myself - so the EKG at rest looks generally normal, with only a slight delay of some rhythms, nothing to worry about, happens to many people. Better see a cardiologist though at some point. Just take it easy in the meantime. Enter Dr Cardiology. He can squeeze me in on January 5. Sounds good to me. I'll just take it easy in the meantime.
Funny thing... I switched doctors just last month. It had been a few years since my last physical. I felt I was overdue. My new doctor was highly rated everywhere I looked, and he sure seemed thorough - got my vaccinations and flu-shot and some blood work - and he listened. Anyway, I remember telling him that I was glad to be meeting him to baseline everything, rather than coming to him for the first time with some serious problem.
December 16, 2015
Yesterday, I only had one episode, but different - no shadows. After taking the stairs to my bedroom I felt palpitations or skipped beats - not really sure how best to describe it - but I checked my pulse and watch and yep, low - about 60bpm.
Today though, I'll be prepared with my trusty heart monitor, it makes me feel safe. I have another episode going up stairs. My wife verifies the low heart-rate on my monitor and measuring against a watch. I've been through this a few times and I think I'm getting the hang of it. Take a short break and carry on - and take it easy. So, I head off to work.
At the office, I head on down the hall and there's my co-worker. I'd better pick up the pace to meet him... d'oh! I feel it again and I am annoyed and a little concerned. Check the monitor - 52bpm. I work the day at the office and felt it happen once or twice more when getting up from my seat to walk around. Maybe I'd better see about moving up that cardiologist appointment. Perhaps tomorrow.
Tonight though is the company holiday party and I'm planning to meet up with my co-workers. Don't want to miss that. I'll just need to move slowly, that's all. I can totally do this... and I do, without incident.
Today though, I'll be prepared with my trusty heart monitor, it makes me feel safe. I have another episode going up stairs. My wife verifies the low heart-rate on my monitor and measuring against a watch. I've been through this a few times and I think I'm getting the hang of it. Take a short break and carry on - and take it easy. So, I head off to work.
At the office, I head on down the hall and there's my co-worker. I'd better pick up the pace to meet him... d'oh! I feel it again and I am annoyed and a little concerned. Check the monitor - 52bpm. I work the day at the office and felt it happen once or twice more when getting up from my seat to walk around. Maybe I'd better see about moving up that cardiologist appointment. Perhaps tomorrow.
Tonight though is the company holiday party and I'm planning to meet up with my co-workers. Don't want to miss that. I'll just need to move slowly, that's all. I can totally do this... and I do, without incident.
December 17, 2015
It's early, and I'm not feeling super. Every time I get up to walk, my heart rate crashes into the fifties. I like metrics and the metrics over the past seven days indicate a trend - a trend downward. My heart rate is dropping more easily and to a lower rate, day by day. I really don't want to find out tomorrow's metric will be. I think this might be a major deal. If this happens one more time, I'm calling the cardiologist.
It's 8:30AM and I'm calling Dr Cardiology. "I need to see you soon, or I'll need to head to the ER... Yes, 2PM will work for me." Great, I can get in a few hours of work today, check-in some code and send out a report and inform my clients and team, basically, I'd better wrap things up - not sure how the future is going to turn out.
It's 8:30AM and I'm calling Dr Cardiology. "I need to see you soon, or I'll need to head to the ER... Yes, 2PM will work for me." Great, I can get in a few hours of work today, check-in some code and send out a report and inform my clients and team, basically, I'd better wrap things up - not sure how the future is going to turn out.
We arrive at Dr Cardiology's office. My heart rate has been crashing throughout the day. One of the doctors just fell ill and the office is overwhelmed. "You should go to the ER." And we're off to the ER.
I explain to the ER admission nurse what's up and lickety-split I'm behind the door. I've got a x-ray tech sizing me up and I'm having blood drawn to check for a heart attack. The afternoon turns to night and I'm not going anywhere. In fact, they have me on telemetry (like a constant EKG) - my every heart beat is monitored... by medical professionals! This is great - I'm feeling very safe here!
It's getting late and I am finally sent from the ER to a room - a private room, larger than my master bedroom, and with a high-def TV, channels, wi-fi and room service - and the food is actually very good! Unfortunately, I'm a fall risk - there's an alarm and it'll go off if I get out of bed without permission. Seriously?! Yes, and perhaps I am not taking this condition seriously enough.
It's getting late and I am finally sent from the ER to a room - a private room, larger than my master bedroom, and with a high-def TV, channels, wi-fi and room service - and the food is actually very good! Unfortunately, I'm a fall risk - there's an alarm and it'll go off if I get out of bed without permission. Seriously?! Yes, and perhaps I am not taking this condition seriously enough.
Later that night, I have very sharp pains in my chest, my heart if I'm not mistaken. Like an ice pick, sharp and deep. More blood work to test for a heart attack - turns out to be negative, no heart attack and that's good.
December 18, 2015
Today, finally, the day I've been waiting for. A chance to demonstrate to the medical professionals my condition - through a stress test. Basically, I'll stay hooked up with electrodes, but I'll be walking and jogging on a treadmill until something weird happens. I am a little concerned - what if nothing happens?
I am wheeled through the hospital to meet with Dr Cardiology. I work through the stress test and... it happened! What a relief. I could feel it, not necessarily to the point where the shadows came in, but surely that was measured, right?! "Yep. Looks like you need a pacer", says Dr Cardiology, (hmm... that sucks)... "second-degree heart block - type two on exertion." Looks like I was born with some bad wiring in my heart and it's finally started to give out (?!). I'll need to meet with Dr Pacemaker shortly - he's like Dr Cardiology, but with additional training on electrical systems.
Back in my suite, I meet with Dr Pacemaker. Right off the bat, he's asking about where I live (on the other side of the woods from the hospital), do I like to hike and be outside (off course, all my life, I was a scout, grew up in the 70s and 80s and never thought twice about being in the woods). Hmm... ever had a bulls-eye rash, recall a tick? Huh, of course I've removed ticks before, but nothing recent - you think this is Lyme Disease?! He isn't sure, but he does think that it is very unusual for a young (ha!) and active man to all of a sudden come down with second degree - type II heart block on exertion. He recommends getting checked out for Lyme Disease, so I'll need to meet with Dr Lyme (#1). Then he provides a crash course in electrophysiology, explaining the basics of heart block and some of the different types of disruptions that can happen in the electrical signal.
I meet with Dr Lyme (#1), and I know him! Actually, his expertise is in all manner of infectious diseases, not just Lyme Disease, and I worked with him a couple years ago when I was under the care of my prior physician to address weird stomach issues that we thought might have been caused by tiny critters. Back then, nothing came back positive through the tests Dr Lyme (#1) ordered - he couldn't help me. Fortunately, my physician had prescribed for me anti-parasite medicine anyway and that started something good. I ended up losing about 30lbs over six months.
But today, Dr Lyme (#1) tells me that we need to rule out Lyme Disease, or more specifically Lyme Carditis, before placing a pacemaker - that's "electrophysiology 101" - never ever put a permanent pacemaker in someone with Lyme Carditis, because the Lyme Carditis will resolve with antibiotics.
But today, Dr Lyme (#1) tells me that we need to rule out Lyme Disease, or more specifically Lyme Carditis, before placing a pacemaker - that's "electrophysiology 101" - never ever put a permanent pacemaker in someone with Lyme Carditis, because the Lyme Carditis will resolve with antibiotics.
I meet with another medical professional to perform an echocardiogram (an "echo") of my heart - standard procedure for pacemaker placement - to check for blood flow and take other measurements. Everything is fine.
Afterwards, I think back... I don't recall a recent tick bite or a bulls-eye rash, but I did have an unusual scab sort of thing within my hairline not too long ago, hmm. Nevertheless, more blood work. Results will be back in a few days.
In the meantime, I have more delicious food and some TV and my wife and kids check in on me after dinner, too. Not bad. Late night, another bout of chest pains like before. Same result - nothing to see here. At some level, I am actually hoping for Lyme Carditis - it can be treated easily with antibiotics. That'd be so much better than a pacemaker, right?
In the meantime, I have more delicious food and some TV and my wife and kids check in on me after dinner, too. Not bad. Late night, another bout of chest pains like before. Same result - nothing to see here. At some level, I am actually hoping for Lyme Carditis - it can be treated easily with antibiotics. That'd be so much better than a pacemaker, right?
December 22, 2015
We're getting awful close to Christmas and I'm still waiting for a diagnosis. I'm trying to make a routine - get up, breakfast, wash-up, do a few laps around the floor and watch my heart rate rise to about 80bpm, then drop to the 50s. Gotta keep it below 80bpm. Research Lyme Carditis, do some laps and monitor my metrics, lunch, research Lyme Carditis, do some laps, dinner, close down with some hockey on the TV. In between enjoy my time with family and other visitors.
Blood tests are coming in. Lyme Disease results are... NEGATIVE. Well, on closer inspection, the first test requires >0.9, I registered 2.16 from Friday and 2.99 from Saturday. Seems positive to me, but apparently, that test doesn't mean so much. The second test, well, the second test means much more - it requires 5 out of 10 and I scored a measly 1 out of 10. Anyway, that second test is iffy too, so Dr Lyme (#1) is going to treat me for Lyme Carditis just in case. This is standard practice to best balance the costs, risks and uncertainty in the tests in treatment vs non-treatment. "Antibiotic treatment", I'm in, sounds good! Let's go. What's that you say... "intraveneous", "28 days"?
I look up Lyme Carditis on my laptop. Apparently, a study a few years ago found three people who died of Lyme Carditis. Those individuals were roughly between 20 and 40 and located in the mid-Atlantic region. They didn't recognize the severity of the condition unfortunately. I'm still not so sure that I do either, to be honest. I'd better read up some more.
December 22, 2015
Today I start my IV antibiotic treatment. But first, I need to take another EKG at rest. Report states first degree AV block, with PR interval increased since December 17, just five days ago. Another medical professional sizes me up and places an IV, a mid-line, along my right bicep. This is getting weird - the mid-line runs into my vein - but it needs to be done, no use worrying about it. Apparently, the IV antibiotic treatment is pretty strong and I should see noticeable improvement within a day or so.
December 24, 2015
I do my morning routine, but this time, my heart rate is pegged in the forties and won't budge. I feel better - I guess - perhaps because the heart rate is constant. Before, the floor would drop from under me and I'd feel that every time. I will need to move to another suite, one on the cardiology wing, where the medical professionals have greater expertise in my condition.
Dr Pacemaker comes in. Last night, my heart stopped beating for six seconds. Thanks for letting me know, Dr Pacemaker, but that doesn't seem like good news. I don't like that my heart stopped beating for a while. He's checked the telemetry further and diagnosed third degree (or complete) heart block. Even if you're not an expert, you could probably tell that third degree is worse than first degree or second degree on exertion, or in other words, I am worse off today than yesterday. Hmm... what's happened since yesterday? Lemme see... oh yeah, I started antibiotics. How could my antibiotics cause this? Not possible, right? Must be the natural progression of my condition, another metric on my downward trend.
I meet with Dr Lyme (#1) again, late night again - all of the doctors come by every day to check in. Anyway, through my online research, I had learned that ticks come in different shapes and sizes depending on their age and at this point I am very certain that the unusual scab in my hairline that I had removed was indeed a nymph, a young tick the size of a poppy seed. I'm still working through the timeline though and that's been very difficult. I just can't piece things together. Everything has become a bit foggy lately. Maybe that happened in November, I'm not really sure. He hardly hears me. I can tell he is at the end of a long shift or just plain disinterested. He reminds me that I am already getting intense antibiotics and there's nothing else to give me for Lyme Carditis. Perhaps antibiotics are not the right approach anyway because I should have gotten better, not worse. We'll just stay the course and monitor. I should show some improvement soon if I were really dealing with Lyme Carditis. Might be bad wiring after all. We'll see.
December 25, 2015
Merry Christmas! My condition has not improved. I ask if I can be discharged anyway - I mean, I can do this same routine at home. I've been a good patient. I am a good patient. I am a motivated patient. I can just as easily sit on the couch or bed at home and spare my family the effort to visit me. And it's the holidays. C'mon, man! Nope. Dr Pacemaker is calling the shots here. Request denied.
December 29, 2015
My condition still has not improved, but finally, I am going to be discharged. Just need to work through a few tests first. EKG at rest shows 3rd degree heart block - officially. Unofficially via telemetry, I had seen my heart rate fluctuate beyond the forties quite a bit over the past week, so perhaps something more happens from time to time. MRI w/wo contrast shows no abnormalities. At this point, my medical team is giving up on the Lyme Carditis diagnosis because there has been no improvement under intense antibiotic treatment. Looks like I'm heading for a pacemaker, but I'll need to complete the antibiotic treatment first just to be sure. Right now though, I'm heading home!
January 19, 2016
I want to meet with Dr Pacemaker to measure for improvement in my heart condition before I meet with Dr Lyme (#1), but scheduling just isn't working out. I'm to meet with Dr Lyme (#1) today and Dr Pacemaker tomorrow.
Dr Lyme (#1) says either (1) I had Lyme Carditis and if that's the case, I'm cured because 28 days of that IV antibiotic treatment always does the trick, and that treatment is CDC standard. And if I still have heart block, well, then the damage has been done and my heart block is definitely permanent. - OR - (2) I never had Lyme Carditis and he couldn't help me there.
My wife and I press him to explain the uncertainty. Surely, there is a chance that additional antibiotic treatment would be warranted in some weird case; like what if there is only partial improvement? No, that doesn't happen; there's no clinical study showing that additional treatment ever works. But I read a medical journal describing a case where over 40 days of treatment was required to finally resolve heart block. No, he says, that cannot be, because all cases resolve within 28 days, usually in a few days actually.
The conversation shifts to the hot Infectious Diseases Society of America (IDSA) versus International Lyme and Associated Diseases Society (ILADS) conflict. IDSA worked with CDC in some manner to set national guidelines for treating all manner of Lyme Disease, including Lyme Carditis. And Dr Lyme (#1) led IDSA for a time. He tells me that IDSA is made up of good people, working in the best interest of patients and setting guidelines based on well-documented cases. IDSA guidelines are very clear here - 28 days, no more than that. Sure, there are providers who prescribe antibiotics outside of the guidelines, but there is no reliable data to support treatment and that's not something he could ever do or recommend in any way.
Bottom line... we've exhausted the responsible approach in handling my condition as Lyme Carditis. There's no more work to be done there. I need to move on. Just need to remove the mid-line.
My wife and I press him to explain the uncertainty. Surely, there is a chance that additional antibiotic treatment would be warranted in some weird case; like what if there is only partial improvement? No, that doesn't happen; there's no clinical study showing that additional treatment ever works. But I read a medical journal describing a case where over 40 days of treatment was required to finally resolve heart block. No, he says, that cannot be, because all cases resolve within 28 days, usually in a few days actually.
The conversation shifts to the hot Infectious Diseases Society of America (IDSA) versus International Lyme and Associated Diseases Society (ILADS) conflict. IDSA worked with CDC in some manner to set national guidelines for treating all manner of Lyme Disease, including Lyme Carditis. And Dr Lyme (#1) led IDSA for a time. He tells me that IDSA is made up of good people, working in the best interest of patients and setting guidelines based on well-documented cases. IDSA guidelines are very clear here - 28 days, no more than that. Sure, there are providers who prescribe antibiotics outside of the guidelines, but there is no reliable data to support treatment and that's not something he could ever do or recommend in any way.
Bottom line... we've exhausted the responsible approach in handling my condition as Lyme Carditis. There's no more work to be done there. I need to move on. Just need to remove the mid-line.
January 20, 2016
Today is my last day of antibiotic treatment - I take it. I'll meet with Dr Pacemaker to evaluate my current condition and figure out what to do next, but I know my heart isn't right - I have low energy and my heart monitor shows a low heart rate. Anyway, a major blizzard is set to hit in a three days. I'd better move fast.
At Dr Pacemaker's office, he performs yet another EKG at rest and now it shows second degree - type I heart block, no exertion required. Damn, that's new. I recall Dr Lyme (#1)'s narrative from yesterday. This partial improvement wasn't expected, but here we are. Dr Pacemaker gets Dr Lyme (#1) on the phone. Dr Lyme (#1) still says it's not Lyme Carditis, despite partial improvement, and that I need to get the mid-line removed.
My life could be hanging in the balance. I try to take a big picture view based on imperfect knowledge. If I actually have Lyme Carditis, then I need antibiotics, but I have none and the outlook for obtaining antibiotics in time is bleak, to say the least. If I actually do not have Lyme Carditis, then I must have bad wiring and I need a pacemaker, but I don't have one, but I can get one soon.
Soon. I need to make a decision very soon. The blizzard will be here in three days. I have visions of dying in front of my wife and kids during a blizzard. 911 unable to reach me. My neighbors trying to help. Oh, the grief that would loom, "If only he had made the right decision." I have a lot to live for. It's not my time to go.
I approve further steps toward pacemaker placement, starting with a holter monitor through tomorrow morning. I will also look into a second opinion on Lyme Carditis, at some point.
My life could be hanging in the balance. I try to take a big picture view based on imperfect knowledge. If I actually have Lyme Carditis, then I need antibiotics, but I have none and the outlook for obtaining antibiotics in time is bleak, to say the least. If I actually do not have Lyme Carditis, then I must have bad wiring and I need a pacemaker, but I don't have one, but I can get one soon.
Soon. I need to make a decision very soon. The blizzard will be here in three days. I have visions of dying in front of my wife and kids during a blizzard. 911 unable to reach me. My neighbors trying to help. Oh, the grief that would loom, "If only he had made the right decision." I have a lot to live for. It's not my time to go.
I approve further steps toward pacemaker placement, starting with a holter monitor through tomorrow morning. I will also look into a second opinion on Lyme Carditis, at some point.
I arrive home to find a package for me. And what a surprise - a week's supply of IV antibiotics! I confirmed with the supplier that this was a mistaken shipment. I am tempted to treat myself and delay the pacemaker. I reconsider based on the latest information at hand. If I actually have Lyme Carditis, then I need antibiotics, but I have none and the outlook for obtaining antibiotics in time is bleak, to say the least and now I have some, but I have no medical supervision and I was explicitly and repeatedly instructed to have the mid-line removed. If I actually do not have Lyme Carditis, then I must have bad wiring and I need a pacemaker, but I don't have one, but I can get one soon.
Anyway, it is hard, but I don't take a single dose. I'll get the mid-line removed tomorrow, or heck it might be useful for surgery.
Anyway, it is hard, but I don't take a single dose. I'll get the mid-line removed tomorrow, or heck it might be useful for surgery.
January 21, 2016
I return to Dr Pacemaker's office. I had fasted - if I were to get a pacemaker and return home before the storm, then I would need to get the pacemaker placed today, recover and return home tomorrow. Storm would hit the day after. I planned this and I feel confident. Holter monitor confirms whatever needed to be confirmed and I am off to the hospital. Within an hour of arriving, I am on my way into the OR.
Before going under, the surgical team placed a pad under me - just in case I go into cardiac arrest - JUST IN CASE!!! Well, what am I to do now, walk out? Sometimes, maybe... just lie to me.
The pacemaker is in and I'll just kick back for tonight.
January 22, 2016
I meet with the Pacemaker consultant to learn more about how it works and what it does. Finally, my mid-line is removed and I head home, again. I need to take it easy for a while, to ensure the pacemaker and its wires connect and that I heal up well. So... great! I am able to put this whole mess behind me. If I had Lyme Carditis, but the damage is permanent, then I've been cured. If I never had Lyme Carditis and instead just had bad wiring, then I have my pacemaker, which is as close to a cure as possible with today's medicine. Good to be me!
Good coding practice handles the unforeseen, an EXCEPTION, and in life there is always an EXCEPTION. For me, that could be anything, perhaps something like... EXCEPTION WHEN I currently have tick-related problems that are longer being treated, then unchecked bacteria may continue to damage my heart to failure and/or spread to other body systems degrading my quality of life until I die. I do not realize the full extent of this EXCEPTION right now, I'm focused on my pacemaker at the moment, and the blizzard, and extending my disability and other practical things. I am encouraged at every turn to trust my medical team and move on with my life, so I will try to do that. But this EXCEPTION lurks somewhere in the back of my mind.
Good coding practice handles the unforeseen, an EXCEPTION, and in life there is always an EXCEPTION. For me, that could be anything, perhaps something like... EXCEPTION WHEN I currently have tick-related problems that are longer being treated, then unchecked bacteria may continue to damage my heart to failure and/or spread to other body systems degrading my quality of life until I die. I do not realize the full extent of this EXCEPTION right now, I'm focused on my pacemaker at the moment, and the blizzard, and extending my disability and other practical things. I am encouraged at every turn to trust my medical team and move on with my life, so I will try to do that. But this EXCEPTION lurks somewhere in the back of my mind.
January 23, 2016
I have a lot of difficulty sleeping. I have a bruise sensation deep under my right collar bone when I roll over on my right side. I move around and the bruise goes away.
I wake up and it's back. And through the day, the bruise becomes more pronounced and occurs in seated positions.
And it's starting to snow. A lot. My neighbors come and shovel the sidewalk and driveway. So fortunate. So very fortunate and grateful.
But that pain, it's getting worse. This must be what a blood clot feels like. Yes, this has got to be a blood clot. Sorry, wife - I'm calling 911 right now. At the height of the blizzard. And it's coming down on top of easily 12 inches of snow. The firemen walk about 200yds to my house. They measure my vitals and assess options. We'll get me out in the chief's SUV from my house to waiting the ambulance... and fire engine... and a few dozen concerned neighbors. The ambulance gets stuck going the 50yds up the hill to the main road. Inside the ambulance, I turn to look through the windshield and I see my neighbors shoveling and blowing snow to clear the street to get me to the hospital. That's community, my friends.
I make it to the hospital. Ultrasound, CT and blood work indeed show a blood clot of the right axillary vein. The ultrasound was a bit tricky - I needed to work closely with the medical professional to zero in on it. Anyway, I'll be on blood thinners for a few months. Doesn't seem to be a major deal.
January 24, 2016
Time to leave, just need to remove the remaining, thin IV. It's removed, but the blood won't stop. It takes three nurses and a doctor to stop the bleeding over 20min. Those blood thinners are powerful. And now I know first hand, I need to be very, very careful. Getting cut or injured in any way could end up being a major deal.
February 1, 2016
I feel terrible - getting worse over the past few days. I have a headache and a productive cough. I can't sleep very well and I'm waking up in a puddle of my own sweat from head to toe, again. That's happened from time to time, for I don't know, years maybe. I meet with my doctor, first time since before I was admitted to the hospital. He says its likely a virus, but if it gets worse, come back.
February 2, 2016
It got worse and I'm back. I'll spare you details but in general the cough was far more productive. He prescribes antibiotics for a sinus and respiratory infection, and I start the treatment. In the evening I have a killer headache.
February 3, 2016
In the middle of the night, my ear hurts, perhaps an ear infection, and as I get up out of bed the whole room starts to spinning wildly. This is vertigo. I google it and learn about a maneuver to clear it up - and it works! I saved myself a third trip to my doctor in three days. I don't want to wear out my welcome.
On the other hand, I'd never had vertigo before tonight. And I now know that antibiotics can kill off germs all at once, and in doing do, the spike in toxins from the killed germs can overwhelm the system and cause problems.
On the other hand, I'd never had vertigo before tonight. And I now know that antibiotics can kill off germs all at once, and in doing do, the spike in toxins from the killed germs can overwhelm the system and cause problems.
February 8, 2016
I return to work from short term disability. I mention this because this was a non-trivial aspect of my ordeal. The initial claim in early January was 3rd degree heart block, so my return to work was set for mid/late January in anticipation that my condition would resolve with antibiotics. Additional information became available after the initial claim - recall I had pacemaker placement and a return visit to the ER for a complication two days later, so I worked with my medical team and insurance company to extend my recovery to February 8. And did I mention the brain fog... completing those forms was very difficult.
February 16, 2016
I receive a book I had ordered off of Amazon. It's a story of a medical professional who has Lyme Carditis, only he didn't know it, for years, like my lurking EXCEPTION. As a result, his heart rots and fails him, he nearly dies several times and he has a heart transplant. It's a compelling story. One that I can relate to. I have been feeling very ill and generally out of sorts since stopping antibiotics / pacemaker placement. I think I have a rash coming on under my arm - probably some reaction to deodorant.
February 21, 2016
I'm no expert, but I can tell a bulls-eye rash and that's one under my arm. Text book. What isn't text book is when it appeared - in the middle of winter. At this point, I have pieced together a timeline... December 5, I was raking leaves. December 8, I found a little scab-looking thing behind my left ear and removed it. It came off like a tick, but it was so small. I'd seen ticks before, but I didn't recognize it at the time as a tick. But I believe it was indeed a nymph.
It is early in the evening and I am wiped out with a headache and malaise. I am going to bed, again. I've been taking daily pictures of the rash, my wife told me to. She said that no one would believe me otherwise.
February 22, 2016
It is early in the evening and I am wiped out with a headache and malaise. I am going to bed, again. I've been taking daily pictures of the rash, my wife told me to. She said that no one would believe me otherwise.
February 22, 2016
I know that my doctor will believe me. I visit him and show him the rash. I explain the new information and timeline and that I am trying to move on from the idea of Lyme Carditis, but things seem to be lining up the other way... towards something even broader, Lyme Disease, impacting multiple systems. He states that he has a strong relationship with Dr Lyme (#1), they go back a long time. My doctor is very concerned about contradicting Dr Lyme (#1) and he refuses to make a diagnosis of Lyme Disease. Instead, he says I need a second opinion. He draws another set of blood work for Lyme Disease. He states that Lyme Disease presentation is illness, rash and heart block - in that order. For me, that order was all mixed up. And ticks have been out of season, so another tick bite after antibiotic treatment seems unlikely. Anyway, he says that if I do have Lyme Disease, "I'll eat my hat!" I don't really think it'll come to that, but that's good to know where he stands.
I try to set up an appointment with Dr Lyme (#1), but the office refuses to see me unless and until I present with test results exceeding the aforementioned thresholds. I can't believe they won't even set up to an appointment with me - I don't think that's very good. Looks like I won't be going back to Dr Lyme (#1) anymore. My professional relationship with Dr Lyme (#1) is broken.
I reach out to another medical professional for a recommendation. Enter Dr Lyme (#2). I set up an appointment.
March 1, 2016
I meet with Dr Lyme (#2), an expert in infectious diseases, not just Lyme Disease. We discuss my heart condition and I show him the rash, much diminished at this time. At this point, my cardio endurance and stamina for work has fallen off a cliff. Three weeks ago, I ran a mile in 10min. The following week, I could only run a half mile. And the following week, I could run less that 200yds. And I have had vertigo, some sort of illness and I haven't told you this - I also had chest pains - like when I was in the hospital back in December. I share all of this with him. He has heard enough - that's Lyme Disease, not just Lyme Carditis. He performs other tests in his office. It looks like other systems are impacted. That's the easy part - the diagnosis.
The hard part will be getting insurance to pay. He had seen only two other cases like mine where insurance would pay for additional treatment - approximately $1,000/week for 4-6 weeks or more. He braces me for the fight ahead. I need to get my records in order and over to him immediately. Also, we want to ensure that we will have Dr Pacemaker on-board, so I'll need to set up an appointment with him to go over the plan and ensure we can verify improvement. We allow a couple weeks to work through insurance and setup an appointment afterwards for us to begin treatment.
The hard part will be getting insurance to pay. He had seen only two other cases like mine where insurance would pay for additional treatment - approximately $1,000/week for 4-6 weeks or more. He braces me for the fight ahead. I need to get my records in order and over to him immediately. Also, we want to ensure that we will have Dr Pacemaker on-board, so I'll need to set up an appointment with him to go over the plan and ensure we can verify improvement. We allow a couple weeks to work through insurance and setup an appointment afterwards for us to begin treatment.
I immediately drive over to my doctor to share the news. He's busy at the moment, but before I have a seat, I'd like to know.
"Have the results from my Lyme Disease tests come in".
"Oh yes, they came back two days ago."
"Really?! Do you think I could have a copy?"
“Sure".
Well, guess what?... now I test at 3 of 10! That's right, I was initially tested at 1 of 10, then had IV antibiotics for 28 days and lesser antibiotics for about two weeks after that, and now I test at 3 of 10. I'm no expert, but that looks like an increase in probability for Lyme Disease.
So I meet my doctor and he's exasperated. "Look", he says, "the results came back and you clearly do NOT have Lyme Disease", because the guidelines say you need 5 of 10 and you only have 3 of 10. I asked him if I should come back in another month to test 5 of 10. He ignores my remark and states that he has spoken at length with Dr Lyme (#1) and they are both convinced and there you have it. Also, I share the diagnosis from Dr Lyme (#2). He remains undeterred. He advises me to move on with my life and that I am chasing something that just isn't there.
Damn, I think to myself, this professional relationship is broken, too.
Damn, I think to myself, this professional relationship is broken, too.
March 2, 2016
I drop off a copy of my records with Dr Lyme (#2). Felt like turning in a final paper in college. I had it nicely bound, all 80+ pages in chronological order, too.
March 11, 2016
I meet with Dr Pacemaker. He is none-too-pleased to see me. I don't understand. Immediately, he states that I don't have Lyme Disease, and I'm floored. Just the facts, please, I implore him. So, we treat my on-going stabbing chest pains and skipped beats as a singular issue dealing with my pacemaker. Apparently, the initial settings are overwhelming - and painful. So we drop the voltage 60% and increase the probability that my heart will conduct on its own.
March 15, 2016
I meet with Dr Lyme (#2). Dr Lyme (#2) holds the key to my health. Only antibiotics will cure my condition and I learn insurance approved the additional treatment the day it was submitted on March 1! Everything is falling into place, but I can tell that he is none-too-pleased to see me. I don't understand. He reveals that he has spoken very candidly with Dr Pacemaker and Dr Pacemaker contradicted a key element of my heart block history. Dr Pacemaker asserts that I showed no improvement while on antibiotics, but that's not true. I show Dr Lyme (#2) the reports that lay things out in plain English, and he states that he cannot interpret them and instead he must rely on expertise of Dr Pacemaker... or another expert in cardiology who cared for me during my hospital stay. It is becoming painfully clear that Dr Lyme (#2) does not trust me or his initial diagnosis. He states that he would not treat me for other symptoms either. Ouch.
This professional relationship is broken, too, but I need to regain Dr Lyme(#2)'s trust - that is very important to me. So, I'm off on a scavenger hunt. I'll put in a good faith effort to follow through with his request. It is possible. I do have an appointment with a Lyme Disease specialist next week, and I will have a follow-up with Dr Cardiology on Friday, but today - I don't have an appointment, but I'm going to have a few words with Dr Pacemaker and I'm going to have them right now!
This professional relationship is broken, too, but I need to regain Dr Lyme(#2)'s trust - that is very important to me. So, I'm off on a scavenger hunt. I'll put in a good faith effort to follow through with his request. It is possible. I do have an appointment with a Lyme Disease specialist next week, and I will have a follow-up with Dr Cardiology on Friday, but today - I don't have an appointment, but I'm going to have a few words with Dr Pacemaker and I'm going to have them right now!
I am at Dr Pacemaker's office. He interrogates my pacemaker to see what's going on. Dr Pacemaker views the results on a computer screen and his jaw dropped, probably as much as humanly possible. I've never seen a jaw drop that far so quickly. He turns to me and says, "You're conducting one to one. Congratulations." Like I just became a father. This means that my heart is healed up.
Apparently, the antibiotics did the trick in killing bacteria after all, but the killed bacteria released toxins that inflamed my heart's electrical wiring increasing heart block. It took my body a long time to process those toxins and reduce inflammation. Once the inflammation subsided, my heart was able to conduct one-to-one again, but before March 11, the pacemaker wasn't letting it and that caused me stabbing pains. Since the settings were adjusted on March 11, my heart has been conducting one-to-one without a problem.
We set up an appointment for a stress test to confirm one-to-one conduction - that test performed later will show one-to-one conduction on exertion. And he will send Dr Lyme (#2) a letter stating that I have indeed improved conduction.
Apparently, the antibiotics did the trick in killing bacteria after all, but the killed bacteria released toxins that inflamed my heart's electrical wiring increasing heart block. It took my body a long time to process those toxins and reduce inflammation. Once the inflammation subsided, my heart was able to conduct one-to-one again, but before March 11, the pacemaker wasn't letting it and that caused me stabbing pains. Since the settings were adjusted on March 11, my heart has been conducting one-to-one without a problem.
We set up an appointment for a stress test to confirm one-to-one conduction - that test performed later will show one-to-one conduction on exertion. And he will send Dr Lyme (#2) a letter stating that I have indeed improved conduction.
March 17, 2016
I meet with Dr Cardiology. He's old-school. He has an assistant perform data entry for him. That's fine. I share my story with him, he rolls his eyes at the behavior of my medical team. He is very calming. I really like this guy. EKG at rest shows one-to-one conduction. And he will send Dr Lyme (#2) a letter stating that I have indeed improved conduction.
March 21, 2016
I meet with an internationally recognize specialist in treating Lyme Disease and other tick-borne diseases, enter Dr Lyme (#3). Dr Lyme (#3) does not take insurance - he will not sign anything for insurance. So, I'm on my own for payment. He'd better be good and I hear that he is, and he is local for me!
In the waiting room, I chat with a family from overseas. Their church took up a collection to pay for airfare/lodging/treatment. The mother has Lyme Disease, but so does her teenaged son. She has only enough money to treat him here, so she's trying less expensive herbal remedies back home. She's better, only sometimes her heart races. Other times her heart rate drops. I recommend that she read the book I mentioned earlier. She might find it compelling. I wish her and her son the best of health.
I meet with Dr Lyme (#3) for well over 2hrs. We go over the 20 pages of material I had sent in a month prior covering basically what's happened since December, and we keep going back... back... back. We connect data points including the scintillating scotoma in September, drenching night sweats for the past several years, fluctuating weight over the past 5yrs or so, stomach problems for the past 15yrs, whacky blood counts for 20yrs, migraines for the past 25yrs, mono from 25yrs+ ago and near perfect health before then. I didn't recall until later that a few months before mono, I spent some time near Lyme, CT, but perhaps that doesn't matter much anyway - I don't recall a tick bite during my time there, and after all I did clearly recall removing a couple ticks in my lifetime plus that one this past December.
Anyway, just as Dr Lyme (#2) diagnosed earlier, it looks like I am currently dealing with Lyme Disease in several systems, not much of a surprise, to be honest, more of a relief. But there's news. It looks like I am dealing also with other nasty tick-related diseases that are less well known to the general public and much of the medical community; one that affects red blood cells in a way similar to malaria and that causes elevated levels of something called bilirubin and another that attacks white blood cells. Some of the bacteria that cause these diseases have long life cycles and will require more intense treatment, so fixing things will take a lot of discipline and effort: antibiotic and herbal treatment, detoxification, diet changes, routine blood work and objective metrics over the coming 12-18 months perhaps, hard to say exactly. And my pacemaker... better keep it. The spirochetes that cause Lyme Disease are alive and won't be killed easily. They move and protect themselves. There is no telling if or when heart block may return.
Finally, I am working with a medical professional who will both diagnose and treat me based on the most recent information available - from my feedback, blood work and other metrics, but also the same from others within their care. I believe I'm on the right track. This new outfit seems to be the real deal. I look forward to working with Dr Lyme (#3) through my treatment.
Anyway, just as Dr Lyme (#2) diagnosed earlier, it looks like I am currently dealing with Lyme Disease in several systems, not much of a surprise, to be honest, more of a relief. But there's news. It looks like I am dealing also with other nasty tick-related diseases that are less well known to the general public and much of the medical community; one that affects red blood cells in a way similar to malaria and that causes elevated levels of something called bilirubin and another that attacks white blood cells. Some of the bacteria that cause these diseases have long life cycles and will require more intense treatment, so fixing things will take a lot of discipline and effort: antibiotic and herbal treatment, detoxification, diet changes, routine blood work and objective metrics over the coming 12-18 months perhaps, hard to say exactly. And my pacemaker... better keep it. The spirochetes that cause Lyme Disease are alive and won't be killed easily. They move and protect themselves. There is no telling if or when heart block may return.
Finally, I am working with a medical professional who will both diagnose and treat me based on the most recent information available - from my feedback, blood work and other metrics, but also the same from others within their care. I believe I'm on the right track. This new outfit seems to be the real deal. I look forward to working with Dr Lyme (#3) through my treatment.
What's this all about?
I have been working through a health condition that could have killed me if not treated correctly. My health condition was brought on by ticks - nasty ticks that can transmit several diseases including Lyme Disease in a single bite. I have shared various aspects of my health condition with family and friends and the feedback has been supportive, curious, alarmed. "nastytick" is intended to extend the discussion more easily - to share my story and receive feedback.
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