Five Years and a Pandemic...

     Five years ago, I picked up a tiny little tick while bagging leaves. I recognize that as a major milestone in my life. That tick sent me to the hospital and started me on clearer path to recovery from an acute life-threatening symptom and decades of neglected treatment for tick borne diseases.

     Anyway, around this time each year since, I take a look back at how things have gone with respect to my health and tick borne disease over the prior year. It’s my annual report basically. These reports help me in sharing my experience and progress with people right now and into the future. So...

     This past year, I have had a lot of improvement in symptoms from my most recent tick bite, on Memorial Day 2019. After my symptoms improved, the intensity of my protocol decreased to “maintenance” without an increase in symptoms, so that was good. Recent lab results show that my innate immune system is fine and my adaptive immune system hovers between low and normal. Overall, that’s good, too. On the other hand, I still need to continue with a healthy lifestyle and my “maintenance” protocol. When I haven’t done a good job with all of that - insufficient sleep, insufficient exercise, excessive stress, poor diet, etc - my symptoms have returned. Typically, my symptoms have been fatigue, blurred vision, and headache - sometimes with scintillating scotoma, which is wild. 

     Also this past year, there’s been the coronavirus pandemic. The pandemic has killed over 260,000 individuals in my country alone in just the past nine months, left many with debilitating health problems, altered daily life for just about everybody, and caused severe financial and emotional hardship on millions, which undoubtedly contributed to countless protests and counter-protests and political turmoil in general. The virus is getting closer, too, as reported cases in my county are currently on a dramatic increase.

     I recently asked my specialist for his take on what I should do with regard to the virus. He stated that my immune system is much better, but there is no way to know how severely the virus will impact me. He recommended an additional protocol - available to everyone, not specifically for me. That protocol includes zinc, vitamin-C, vitamin-D3, nattokinase, and querecetin. He also stated that hydroxychloroquine works.

     A very close family member who also manages symptoms from tick borne diseases contracted coronavirus in the past year. He said that his symptoms were terrible, but he started feeling better within a day of taking hydroxychloroquine. He’s recovered without lingering symptoms. I’m glad for him that he’s recovered of course. I’m also encouraged somewhat for his family, including me, because coronavirus has devastated families, perhaps in part due to genetic susceptibility, so his recovery may be an indication of what may be possible for us.

     I will end this annual report with this curiosity - I am in a period where the dates and days align with when my ordeal began. Five years ago this past Saturday was the Saturday when I raked and bagged leaves and picked up that little bug that changed so much. The dates and days will align for just a few months, through February 28, 2021.

Four Years...

     I am closing out the fourth year of my ordeal of nasty tick-borne disease. This year was remarkable on two fronts: I found a way to connect with other people going through similar ordeals and I had an unfortunate set-back.

     Facebook Groups. They are awesome. I joined a few Lyme groups to help those who are struggling to understand what they are dealing with – especially those with heart block symptoms, which can be fatal if left untreated – and in the process, I learned about other symptoms that Lyme and coinfections can cause, like blurry vision. I didn’t know about that. I also connected with a few people who also dealt successfully with Lyme carditis.

     As for the set-back, I removed another tick. This one had set up shop on my leg, but probably only for a few hours before I plucked it off. That was Memorial Day. Within a day I had fallen ill with a bad headache. Soon after, pains in my heart, shoulder and foot set in. Dr Lyme#3 increased intensity of my protocol to address Lyme. A few weeks after that, the night sweats started up again; Babesiosis had returned, so Dr Lyme#3 shifted the scope of my protocol accordingly. He also confirmed that the neurological symptoms of Lyme and coinfections may include intermittently blurry vision.

     The latest protocol has helped a lot. My vision and most of the pains have improved, though the pain in my foot continued on and got much worse, so I called in my podiatrist to help. He sent samples to a lab for analysis, but he couldn't test for Lyme and coinfections despite my concern about the pain starting the day after the recent tick bite. Results showed a cyst with gout, so there you have it. Getting back to the protocol, as an unexpected bonus, my white blood cell and bilirubin counts moved into the normal range after a few cycles and they’ve stayed there since. That's a surprise, because basically they have been off for as long as I've had blood counts, and that's at least the past 20yrs, minus a few blips since I started treating for tick borne disease four years ago. WBC was low and the other very high. Anyway, I believe I am back on track now. I am looking at just a couple more cycles of this more intense protocol, then it looks like I will return to a maintenance protocol thereafter. And that’s basically where I had been before that tick bite.
     btw... This recent bug found me some time between getting on my swimsuit at my home and taking if off a few hours later. In between, I went to my neighborhood pool.

As you can see, this guy was somewhat small. The one that got me back four years ago was much smaller.

Fortunate...

     My mind races back to that terrible time nearly three years ago as my own health faded toward death. I thank goodness for inquisitive and cautious medical team of dozens (perhaps over a hundred professionals) who together treated me despite conflicting test results and restored my health; modern medicine, which provided the antibiotics and treatments that slayed the bacteria that was killing me; excellent benefits through my employer, which covered the exorbitant costs of my treatment ($200K+); my family, friends, neighbors, coworkers and clients who supported me through the initial months of intense symptoms, bewilderment and incapacitation and subsequently through years of strict protocol toward recovery.
     So many things had to fall into place and without them all, I firmly believe I wouldn’t be here today. And I know that there are too many others who could’ve been here, too, but aren’t because something had not fallen into place for them.

Record Keeping - Symptoms and Protocol...

    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.

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.

treatment (dosage)	Total Dosage	Cost ($) per Dosage	Total Cost
activated charcoal (280mg)	32	$0.07	$2.12
albendazole (200mg)	30	$200.00	$6,000.00
artemisinin (1000mg)	204	$2.78	$566.89
burbur (10drops)	1624	$0.50	$812.00
ceftin (1000mg)	228	$3.00	$684.00
ceftin (500mg)	108	$1.50	$162.00
ciprofloxacin (500mg)	108	$0.50	$54.00
CoQ10 (200mg)	714	$0.58	$410.55
CoQ10 (300mg)	98	$0.23	$22.87
cortef (2.5mg)	392	$0.60	$235.20
cortef (5mg)	269	$1.20	$322.80
dao (10K HDU)	112	$0.97	$108.64
daraprim (50mg)	30	$1,566.67	$47,000.00
enule (10drops)	204	$0.67	$136.00
fluconazole (200mg)	108	$8.00	$864.00
gabapentin (100mg)	980	$0.50	$490.00
ivermectin (12mg)	3	$14.00	$42.00
krill oil (1000mg)	812	$0.60	$487.20
l-ornthine l-aspartate	1446	$2.40	$3,470.40
lactoferrin (100mg)	8	$0.25	$2.00
lactoferrin (300mg)	8	$0.75	$6.00
lactoferrin (500mg)	192	$1.25	$240.00
leukovorin (10mg)	30	$3.50	$105.00
mepron (2tsp)	132	$23.33	$3,080.00
methylfolate (2000mcg)	651	$0.32	$208.32
methylfolate (400mcg)	84	$0.06	$5.38
metronidazole (500mg)	120	$0.71	$85.71
minocin (100mg)	198	$0.58	$115.50
nattokinase (2000FU)	735	$0.12	$89.83
pinella (10drops)	1624	$0.50	$812.00
probiotics (10B FCU)	788	$0.44	$344.75
rifabutin (150mg)	150	$6.67	$1,000.00
saccharomyces boulardii (20B FCU)	560	$0.33	$186.67
septra (1.5tab)	36	$0.75	$27.00
septra (1tab)	110	$0.50	$55.00
trazodone (25mg)	560	$0.13	$74.67
trazodone (50mg)	140	$0.27	$37.33
turmeric (500mg)	812	$0.03	$27.07
vitamin d (5000mg)	735	$0.07	$53.45
xylitol (0.5tsp)	8	$0.08	$0.62
xylitol (1tsp)	8	$0.16	$1.25
xylitol (2tsp)	192	$0.31	$59.90
			$68,488.12

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.

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.