As I’ve said before, I like working with data. In fact, that’s what I do for a living, and from time to time, that's what I do for fun, too. I’ve tracked gas mileage based on receipts for several years, for fun. I’ve gathered scoresheets from my sons’ hockey games and tallied up points per player at season's end, for fun. Well, as my ordeal unfolded, I found myself needing to keep track of two sets of information on a daily basis: symptoms and protocol.
Recall that Dr Lyme#3 based diagnosis and treatment very heavily on my symptoms. In fact, I had to provide a rather lengthy and detailed history of symptoms before he took me on as a patient. He made it clear that I would need to maintain a log of symptoms - what they were, when they happened, and how intense they were - so that he could evaluate progress and adjust my protocol accordingly. My symptoms would come and go and return again, so I needed to keep track of those symptoms daily in a way that was pretty flexible on entry and easy to review at a glance.
Protocol, the schedule for taking treatments including dosage, was going to be fairly complicated. My treatments included antibiotics, probiotics, vitamins, minerals, anti-inflammatories, sleeping aids, and detoxification and the schedule for taking those treatments would be all over the place. Some treatments would be taken intermittently over a three to four week cycle while other treatments would be taken daily. Fortunately, the protocol would usually be set for several cycles into the future during my appointments with Dr Lyme#3. So, I didn’t need flexibility on daily entry. No, instead I needed to be able to set the protocol up front, then refer to it daily to see what I needed to take.
I first tried to keep track of symptoms and protocol separately. I tracked my symptoms as a document on my iPhone, but it became clear after about two days that that approach was going to be terrible if I kept at it much longer because it wasn’t easy for me to see several days worth of symptoms at a glance. And as for my protocol, Dr Lyme#3 had provided a color-coded document that described treatments over multiple cycles, but I had to perform non-trivial calculations to determine what I needed to take on a given day. So, I pondered options.
I know that there must be apps out there that I could use for keeping track of symptoms and protocol, but I suspected that each would require a bit of fiddling to get symptoms with severity and protocol into the app. Inevitably there would be some sort of glitch on some update down the road, too. Quite frankly, I didn’t want to deal with an app if I didn’t need to, and I had a feeling that there was indeed a better way to record keeping somewhere.
I thought about transforming the color-coded document from Dr Lyme#3 into something else, something that would show protocol very clearly for each day in the cycle. A spreadsheet would work. I set up the treatment with dosage as columns and dates in the cycle as rows, then I greyed out cells where treatment wasn’t called for. That looked better - it was clearer to me what I needed to take each day. After I created the spreadsheet, I realized that I could write my symptoms across the row for the day, too. I could use similar short-hand as I liked to make that happen more easily. And as an added bonus, I could color-code the day for my scheduled labs in the spreadsheet, too! So that's what I did.
Nowadays, I enter my protocol from Dr Lyme#3 using my laptop and Google Sheets available via Google Drive as a single cycle per spreadsheet. I try to get treatments that are on the same schedule listed next to each other in the spreadsheet - it's easier for me to read it that way. I print off the current spreadsheet in landscape to fit on a single page and provide as much room as possible to enter symptoms in each day's row. Thereafter, I enter my symptoms in pen daily into the printed off spreadsheet. I hold onto the completed spreadsheets and I usually provide copies at my subsequent appointment with Dr Lyme#3. I should scan the completed spreadsheets, just in case the originals become lost, but I just haven’t gotten around to doing that, yet.
I have found this approach to be a low cost and relatively low effort way to keep track of very important information regarding my symptoms and protocol and I have made available a sample spreadsheet for you to review, download and use, however you like. Please let me know if you recommend another approach.
Monday, July 9, 2018
Thursday, May 17, 2018
Total Financial Cost...
This post has been a long time coming. I have wanted to offer a breakdown of the costs associated with saving my own life from tick-borne illness in terms that everyone could related to - money. So, I offer you a breakdown of financial cost due to medical services, financial cost due to treatments and lost time. The financial costs are measured in US dollars based on the cost before insurance coverage, if any, kicked in. The lost time from work is measured in work-hours. You could calculate cost based on any rate you choose - perhaps your own rate.
My hope is that these costs will resonate with you and that you will share this information and begin to ponder - how would you handle costs and down time like this?, is that approach workable? what could you do to make things better for you and those you love in case something like this happens?
COST OF MEDICAL SERVICES
I just pulled my insurance records... and guess what?! There are a lot of records! Since this ordeal started, I've had so many appointments with specialists and my new general practitioner, surgeries (including placement of the pacemaker that stands ready to kick in if/when necessary), inconvenient trips to the emergency room where I thought I was going to die of a heart attack, and labs and other diagnostic services. The records show over 200 claims, not including the 10 or so visits to Dr Lyme#3, who does not take insurance. Total cost...
$175,857.71
COST OF TREATMENTS
This total was such a pain to gather, just letting you know. I have included a summary below, but overall there are over 30 different treatments (over 40 if you consider variations in dosage). The most expensive one is daraprim - coming in at $47,000, but there are a few others that ran over $1,000. Costs are based on comparison shopping on the internet for average - not minimum, not maximum. Total cost...
$68,500 (+/- ~$10,000)
LOST TIME FROM WORK
This total covers only time when I was out of work due to the initial phase of my ordeal and subsequent medical services. It does not cover lost personal time like missing my boys' hockey games because I was laid up in the hospital with a heart rate in the 40s, or inability to perform chores and parental responsibilities due to exhaustion and other symptoms. Total time...
300 hours (+/- ~20hrs)
TOTAL FINANCIAL COST
$244,345.71 + (300 hours x <hourly rate>)
Very fortunately for me and my family, we avoided financial ruin because I had (and continue to have) very good benefits through my employer, so my out of pocket costs - though great relative to common household expenses - were significantly less than they could have been otherwise. I also had (and continue to have) very understanding and supportive leaders, clients and team members, so I didn't lose my job either. And I didn't lose my insurance, so that's very good, too.
If you like, please feel free to leave a comment and I'll get back to you. Later.
And here's the treatment summary.
My hope is that these costs will resonate with you and that you will share this information and begin to ponder - how would you handle costs and down time like this?, is that approach workable? what could you do to make things better for you and those you love in case something like this happens?
COST OF MEDICAL SERVICES
I just pulled my insurance records... and guess what?! There are a lot of records! Since this ordeal started, I've had so many appointments with specialists and my new general practitioner, surgeries (including placement of the pacemaker that stands ready to kick in if/when necessary), inconvenient trips to the emergency room where I thought I was going to die of a heart attack, and labs and other diagnostic services. The records show over 200 claims, not including the 10 or so visits to Dr Lyme#3, who does not take insurance. Total cost...
$175,857.71
COST OF TREATMENTS
This total was such a pain to gather, just letting you know. I have included a summary below, but overall there are over 30 different treatments (over 40 if you consider variations in dosage). The most expensive one is daraprim - coming in at $47,000, but there are a few others that ran over $1,000. Costs are based on comparison shopping on the internet for average - not minimum, not maximum. Total cost...
$68,500 (+/- ~$10,000)
LOST TIME FROM WORK
This total covers only time when I was out of work due to the initial phase of my ordeal and subsequent medical services. It does not cover lost personal time like missing my boys' hockey games because I was laid up in the hospital with a heart rate in the 40s, or inability to perform chores and parental responsibilities due to exhaustion and other symptoms. Total time...
300 hours (+/- ~20hrs)
TOTAL FINANCIAL COST
$244,345.71 + (300 hours x <hourly rate>)
Very fortunately for me and my family, we avoided financial ruin because I had (and continue to have) very good benefits through my employer, so my out of pocket costs - though great relative to common household expenses - were significantly less than they could have been otherwise. I also had (and continue to have) very understanding and supportive leaders, clients and team members, so I didn't lose my job either. And I didn't lose my insurance, so that's very good, too.
If you like, please feel free to leave a comment and I'll get back to you. Later.
And here's the treatment summary.
Tuesday, December 12, 2017
Two years later...
I'd like to think that I've come through this ordeal; it's been two whole years since I was stricken so severely with Lyme Disease after all. In many ways I have. Certainly heart block has been resolved for quite some time, that was the main, life-threatening concern, and I am managing several other concerns fairly well with the help of my LD specialist. Thank God for him and his team.
I'm not sure I will ever return to my prior, unlimited diet. I foresee a lifetime of daily kale and gallons of water and supplements. I've tried unsuccessfully to introduce small amounts of gluten, caffeine and lactose and even the slightest alcohol - as in exquisite sauce or fondue - with poor and fairly immediate results.
Metrics for my overall health remain much improved. Blood counts, weight, heart rate and endurance are all better, certainly better than two years ago and in some cases better than 20 years ago.
I consider myself extremely fortunate - fortunate that I have a supportive wife, family, community, employer and clients; fortunate that I can afford my medical care and competitive, yet expensive, health insurance; fortunate that I have so many choices for medical care; and fortunate in the extent and yes, even in the rate of my recovery.
I look back at that Thursday night playing basketball when my heart block started and I try to recall my concerns and general outlook at that point in time. So much has changed, beyond just my health - for one, my family has grown considerably (and thankfully) - and those changes were completely unknowable to me at that time. Nowadays, I try to live in the present more than ever, receiving and responding to new information all the time; it's very important to me to be flexible so that I can adjust my priorities and embrace life as it unfolds at an increasingly rapid pace.
I'm not sure I will ever return to my prior, unlimited diet. I foresee a lifetime of daily kale and gallons of water and supplements. I've tried unsuccessfully to introduce small amounts of gluten, caffeine and lactose and even the slightest alcohol - as in exquisite sauce or fondue - with poor and fairly immediate results.
Metrics for my overall health remain much improved. Blood counts, weight, heart rate and endurance are all better, certainly better than two years ago and in some cases better than 20 years ago.
I consider myself extremely fortunate - fortunate that I have a supportive wife, family, community, employer and clients; fortunate that I can afford my medical care and competitive, yet expensive, health insurance; fortunate that I have so many choices for medical care; and fortunate in the extent and yes, even in the rate of my recovery.
I look back at that Thursday night playing basketball when my heart block started and I try to recall my concerns and general outlook at that point in time. So much has changed, beyond just my health - for one, my family has grown considerably (and thankfully) - and those changes were completely unknowable to me at that time. Nowadays, I try to live in the present more than ever, receiving and responding to new information all the time; it's very important to me to be flexible so that I can adjust my priorities and embrace life as it unfolds at an increasingly rapid pace.
Monday, April 24, 2017
Dietary Changes...
As I mentioned a few months ago on my first anniversary of this ordeal, I have been working through a broad treatment covering changes in diet, exercise and sleep, a set of prescription medication and herbal supplements all taken on a very complicated schedule, and frequent monitoring. I remember at all times where I am in treatment and if I fail to follow it even slightly my health usually suffers soon after, though less drastically now than even a few months ago.
My treatment is generally intended to help my body fight germs and process toxins introduced by killing them off, but I did happen to get fit, slim down and lose a bunch of weight in the process, and I've received a lot of interest specifically in the changes to my diet, so I want to share that right away.
Gluten and Lactose (OUT!): I had gathered my medical history for Dr Lyme#3 prior to my first appointment. On review, he believed that germs were contributing to the variety of abdominal issues that I had been dealing with for several years, actually decades, and that those germs were thriving off of my diet that consisted heavily of gluten and lactose in the form of cereal and milk, pizza, pasta, yogurt, bread and other baked treats. It has been difficult, but gluten and lactose are out.
Alcohol (OUT!): Some of the medications Dr Lyme#3 prescribed for me explicitly warn against alcohol consumption. Also, measurements showed that my liver was having difficulties already - before starting treatments - and my liver would need to work more vigorously to process the toxins released from germs killed by medication. I had already chosen to avoid alcohol generally, but I became even more vigilant to avoid consuming any at all.
Caffeine (OUT!): Dr Lyme#3 recommended that I track my symptoms daily. As I tracked my symptoms, I noticed that I would occasionally have difficulty getting good sleep if I had caffeine in the evening or sometimes even in the late afternoon. Also, I had been dealing with heart palpitations and pain from time to time. So, to help me sleep and to cut out a possible and unnecessary cause of those heart symptoms, caffeine is out.
Sugar (REDUCE!): Dr Lyme#3 believed that some of the germs that were afflicting me were thriving on sugar, and aside from that, excessive sugars are detrimental to health. So, I minimize sugar as much as practical by skipping the sugariest of sweets: sweet drinks and soda, candy and all manner of desserts.
Nuts (OUT!): I had enjoyed nuts of all kinds for many years, but too many times since I've started treatment, I've noticed that shortly after consuming nuts, I would have either abdominal pain or heart symptoms.
Meat (IN!): As I tracked my symptoms, I noticed that I would crave meat - nearly any form of beef, chicken, pork. Sometimes, if I hadn't eaten meat for a while, my heart symptoms would start, then shortly after eating meat, they would go away. Unfortunately, meat is generally expensive and I can't really eat meat at each meal, so meat is in, but it has its limits.
Vegetables (IN!) and Fruits (IN!) and Water (IN!): I need to eat something! These are about the only things left in the supermarket that I can eat a lot of, and good news for me, they are good for health - and generally they are really inexpensive. I drink a lot of water to process and flush toxins - easily over a quart each morning for breakfast and several more cups during the day.
I have an approach that has helped me with the new diet that is heavy on fruits and vegetables. The approach centers around the Nutri-Bullet I receive a couple of years ago for Fathers' Day. The Nutri-Bullet an easy-to-use blender or "nutrient extractor" - just throw in any manner of veggies and fruits and (for me) some non-[gluten,lactose,alcohol,caffeine,sugar] liquid and water, set it spinning for a short while (maybe 15sec), then consume.
Usually, I hit the supermarket every four days or so for supplies for my Nutri-Bullet smoothies. I have five types of ingredients (favorites in bold font).
(1) Leafy vegetable: kale, lettuce, chard, Belgian endive, radicchio, green bean, brussel sprout, spinach, parsley.
(2) Starchy vegetable: carrot, butternut squash, sweet potato, turmeric root, beet.
(3) Fruit: avocado, tomato, blueberry, blackberry, raspberry, strawberry, banana, orange.
(4) Liquid: coconut water, coconut milk, orange juice, cranberry juice, water.
(5) Grains: (gluten-free) oatmeal, Cream of Rice.
I have tried mixing in onions garlic and hot and sweet pepper, but they didn't work out very well at all for me - tasted horrible going down and/or I felt horrible afterwards.
Recipes are available, but I prefer to pick from whatever I have available at the time, and because I view the Nutri-Bullet meal most of the time as a necessity, certainly not a luxury, I pound the smoothie to get it over with a quickly as possible. It is usually not an enjoyable experience to say the least, especially with the super tall 32oz cup I use, but it goes down in about 15-30sec and I do feel pretty good afterwards, and I load up on good foods to start the day, so that's nice. And on occasion, I will make a deliberate decision to throw down a smoothie for lunch or dinner or whenever I'm hungry, and chalk that up as another minor victory toward good health.
My treatment is generally intended to help my body fight germs and process toxins introduced by killing them off, but I did happen to get fit, slim down and lose a bunch of weight in the process, and I've received a lot of interest specifically in the changes to my diet, so I want to share that right away.
Gluten and Lactose (OUT!): I had gathered my medical history for Dr Lyme#3 prior to my first appointment. On review, he believed that germs were contributing to the variety of abdominal issues that I had been dealing with for several years, actually decades, and that those germs were thriving off of my diet that consisted heavily of gluten and lactose in the form of cereal and milk, pizza, pasta, yogurt, bread and other baked treats. It has been difficult, but gluten and lactose are out.
Alcohol (OUT!): Some of the medications Dr Lyme#3 prescribed for me explicitly warn against alcohol consumption. Also, measurements showed that my liver was having difficulties already - before starting treatments - and my liver would need to work more vigorously to process the toxins released from germs killed by medication. I had already chosen to avoid alcohol generally, but I became even more vigilant to avoid consuming any at all.
Caffeine (OUT!): Dr Lyme#3 recommended that I track my symptoms daily. As I tracked my symptoms, I noticed that I would occasionally have difficulty getting good sleep if I had caffeine in the evening or sometimes even in the late afternoon. Also, I had been dealing with heart palpitations and pain from time to time. So, to help me sleep and to cut out a possible and unnecessary cause of those heart symptoms, caffeine is out.
Sugar (REDUCE!): Dr Lyme#3 believed that some of the germs that were afflicting me were thriving on sugar, and aside from that, excessive sugars are detrimental to health. So, I minimize sugar as much as practical by skipping the sugariest of sweets: sweet drinks and soda, candy and all manner of desserts.
Nuts (OUT!): I had enjoyed nuts of all kinds for many years, but too many times since I've started treatment, I've noticed that shortly after consuming nuts, I would have either abdominal pain or heart symptoms.
Meat (IN!): As I tracked my symptoms, I noticed that I would crave meat - nearly any form of beef, chicken, pork. Sometimes, if I hadn't eaten meat for a while, my heart symptoms would start, then shortly after eating meat, they would go away. Unfortunately, meat is generally expensive and I can't really eat meat at each meal, so meat is in, but it has its limits.
Vegetables (IN!) and Fruits (IN!) and Water (IN!): I need to eat something! These are about the only things left in the supermarket that I can eat a lot of, and good news for me, they are good for health - and generally they are really inexpensive. I drink a lot of water to process and flush toxins - easily over a quart each morning for breakfast and several more cups during the day.
I have an approach that has helped me with the new diet that is heavy on fruits and vegetables. The approach centers around the Nutri-Bullet I receive a couple of years ago for Fathers' Day. The Nutri-Bullet an easy-to-use blender or "nutrient extractor" - just throw in any manner of veggies and fruits and (for me) some non-[gluten,lactose,alcohol,caffeine,sugar] liquid and water, set it spinning for a short while (maybe 15sec), then consume.
Usually, I hit the supermarket every four days or so for supplies for my Nutri-Bullet smoothies. I have five types of ingredients (favorites in bold font).
(1) Leafy vegetable: kale, lettuce, chard, Belgian endive, radicchio, green bean, brussel sprout, spinach, parsley.
(2) Starchy vegetable: carrot, butternut squash, sweet potato, turmeric root, beet.
(3) Fruit: avocado, tomato, blueberry, blackberry, raspberry, strawberry, banana, orange.
(4) Liquid: coconut water, coconut milk, orange juice, cranberry juice, water.
(5) Grains: (gluten-free) oatmeal, Cream of Rice.
I have tried mixing in onions garlic and hot and sweet pepper, but they didn't work out very well at all for me - tasted horrible going down and/or I felt horrible afterwards.
Recipes are available, but I prefer to pick from whatever I have available at the time, and because I view the Nutri-Bullet meal most of the time as a necessity, certainly not a luxury, I pound the smoothie to get it over with a quickly as possible. It is usually not an enjoyable experience to say the least, especially with the super tall 32oz cup I use, but it goes down in about 15-30sec and I do feel pretty good afterwards, and I load up on good foods to start the day, so that's nice. And on occasion, I will make a deliberate decision to throw down a smoothie for lunch or dinner or whenever I'm hungry, and chalk that up as another minor victory toward good health.
Saturday, December 10, 2016
One year later...
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.
"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.
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.
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