Jim’s Story – Part 3: Coffee Done Right

Diagnosis & Treatment

JJWithout typing things that I wouldn’t want my mother to read, who knew that a husband and wife could share Lyme Disease with each other? Not me.

While we’re not sure that’s how both of us arrived with Lyme, it certainly could be the case.

Sometime in the spring of 2015, my wife, Jenny, had been dealing with chronic urinary tract and kidney infections. (BTW: Our kids love it when we write about tinkle.)  Generally, as I sought explanationsgoogle for my seemingly unconnected collection of symptoms, I learned that the Internet can lead to some scary self-diagnoses. Type “hypoglycemia,” “brain fog,” and “memory issues” into Google and you’ll soon have high blood pressure as a new symptom. So, generally I now subscribe to the advice Billy Beane/Brad Pitt gave to his daughter in Moneyball: Don’t do things like search the Internet.”

But Jenny found some password-protected discussions to query her issues that ultimately led her to a urological nurse practitioner who told her in their first conversation that 98% of her patients who come to her with chronic UTIs actually have Lyme Disease. While Jenny’s was a complicated diagnosis for reasons you can find on her blog, it was during this period that we became suspicious, then convinced, that I also had Lyme, this despite the fact that I had tested negative for Lyme previously.

That’s because my doctor ordered the wrong test. To diagnose someone with a Lyme infection that was more than several weeks old, you need a different type of test – a Western Blot test.  It took months for Jenny to get in with her practice, and then it took several more months for us to make the leap to get me fully tested. (We were also paying out of pocket for all of this treatment.)

Lyme ribbon1I remember during the appointment going through my symptoms one by one and the nurse practitioner nodding that each was a classic symptom of Lyme. “Hypoglycemia?” Yes, because Lyme can stress the adrenal glands. “Gout?” Yes, but more likely it was  joint pain, but not gout itself, which is reflected in the bloodwork my PCP had ordered. (He thought it WAS gout despite a lack of evidence in the bloodwork.) “Acid reflux?” Yup. “Brain fog and memory issues?” She’s was nodding really hard at this point. “Neck creaking, like I have sand in my neck when I move my head?” Absolutely. In fact, she told me, that if you go to a Lyme conference, you’ll see all the men in the audience straining and popping their necks the entire time.

So, it was well before the official diagnosis finally arrived in early November 2016 that I already felt certain that I had Lyme Disease. It nonetheless was validating that I wasn’t a horrible hypochondriac. Better still, it could be treated.

She gave me several options for treatment, among which was the general approach of hitting it hard or hitting it not quite as hard. “Hit it hard,” I told her. Let’s get this done quickly.

sauna.jpegShe warned me. The harder you hit it – particularly people like me who’ve experienced a lot of neurological symptoms – the tougher the treatment was likely to be. Detoxification was vital. She recommended regular, vigorous cardio-vascular exercise along with regular use of a sauna. Sweat would be my new best friend.

No problem I said. I love to run and there’s a sauna at the gym.

Still, she said, as the Lyme dies off, it will cause you to re-visit some of your symptoms, perhaps even bringing on new symptoms. This also was particularly true for someone like me who had neurological involvement.

She counseled that I might want to take an additional step for detox – a weekly coffee enema.

Now, it’s only been in the past few years that I began DRINKING coffee. I had a hard enough time getting used to sending the coffee SOUTH. There was no way – NO WAY – that I was going to be sending the coffee NORTH.

But I had been warned.

pillsSo off I went with a daily dose with the antibiotic minocycline and twice weekly doses of another antibiotic, Tinizadole. In simplistic terms, the Tinizadole would chase the Lyme out of my soft tissues – particularly my brain – and the minocycline would kill those cells. All the while I would be detoxing with exercise and visits to the sauna (with not one drop of coffee going near my butt).

Relief was nearly instantaneous. My brain fog lifted. My sharp memory returned. I felt better than I had felt in years. I remember sitting down for Thanksgiving dinner and telling my family how much better I felt.

We played board games and I would win. I was funny again. Words and names and phone numbers that had eluded me for the previous two years came back to me.

depression2.jpegIt was euphoric.

But behind the scenes, the Lyme cycles would continue, even as the disease was being attacked. And it was during the die-off periods that I became susceptible to something new: depression.

On a rainy Sunday in early December, I had a really bad day. I just became inexplicably sad. I headed to the treadmill and the sauna at the gym and it was some measure of relief, but I had several days that I just felt horrible about myself.

Jenny&Jim.jpgAnd, then it would lift and life was great again and we cruised through Christmas and I was reminded of the past two Christmases when my undiagnosed Lyme symptoms were so bad that I felt that I barely could function or speak. I could concentrate like I couldn’t before. I kept joking with everyone that “my brain is back.”

But then the four-week mark would hit and on came the depression, except maybe a bit worse. I extended my exercise and was religious about it because I didn’t want to ease up on the treatment. I reasoned (with some legitimacy) that the more serious the side effects from the treatment, the more certain I could be that it was working.

Each time I contacted the nurse practitioner for advice, she would bring up the coffee enema as the magic elixir. “I AM NOT DOING A COFFEE ENEMA!!!”

February, March … I could feel the progress, but the Tinizadole-induced depression seemed to intensify and become more frequent. Problems that previously had rolled off my back no longer did.

I was walking around angry and sad, this while I was constantly dripping with sweat. Because I was exercising all the time, I was losing weight. And then the haze would lift and everything would feel great again. For my family, it was like they had five of the seven dwarves wrapped into one person – Grumpy, Sweaty, Stinky, Skinny, and Happy.

I eased up on the Tinizadole – once a week rather than twice a week. It didn’t help enough. So, we gave up on it altogether, but, you know, there is another way. “NO COFFEE ENEMAS!”

The progress, which seemed to come so swiftly at the beginning, came in more incremental doses.  And while Jenny continued with the urological lyme practice, I decided to seek out someone who was a little closer to the house, with more extensive experience with men. (We are still thrilled with Jenny’s care, but needed to find a different solution for me.)

pulse dosing

Image Courtesy of Barbara Siegal @look2listen

My new doctor boasts a pedigree in internal medicine from the nation’s best schools, and is involved in the latest studies coming out of Hopkins and Stanford. She wanted to try what they call “pulse dosing” and moved to that, tying the minocycline with a different antibiotic, Flagyl, and a mess of supplements. The supplements were meant both to smooth the neurological side effects while maximizing the performance of the antibiotics. And then, every four weeks, skipping the antibiotics altogether.  The “pulse dosing” method tricks the lyme bacteria into thinking they are “safe” and then we hit them again when they “relax.”

FAM.jpgI’m now one year into my Lyme treatment. I wish I could say it was a linear progression, but it hasn’t been. I probably have endured more dark days in the past year than I have in the rest of my life combined. But I’m nearly free of my Lyme symptoms. Some word-recall issues will surface every now and then. On any given day, my neck will creak more than I would like, but not nearly as frequently. And I am frustrated that it hasn’t completely disappeared, but I can tell I am on the mend.

coffeeJust last week, we changed up my antibiotic regimen and I’m told the treatment probably was always going to be 18 months in duration.

It has not been fun … but if there’s one thing I can say with the highest degree of pride, it is this: Not one drop of coffee has entered my butt.


Brain Fog

Michael KeatonIn a movie that time has forgotten, Night Shift, the character played by Michael Keaton (“Bill”) calls himself an “idea guy.” And he explains to Henry Winkler at one point that he came up with the idea for handy wipes, only that someone else had already come up with that idea.

I did the same with the description “brain fog.” It was how I began describing what I was going through to my wife and to doctors and I thought it was a Jim Cudahy original. It’s not. And it turns out is a classic symptom of Lyme.

I have to find SOME way to laugh at it now because, at its worst, the brain fog was debilitating. And because I couldn’t describe it well, it felt to me that other people, including doctors, dismissed it.

The brain fog took on multiple forms.

wordsMemory. Those who know me well can tell you about my steel-trap memory. Not only did that vanish, but so did my ready access to words and names that previously arrived to me effortlessly.  I’d forget the details of conversations. Trying to remember phone numbers was an exercise of futility. Names? Forget about it.

At one point long before my Lyme diagnosis but well into the onset of the disease, we were watching the movie Forget Alice with Julianne Moore. The movie chronicles the decline of a middle-aged person with early-onset Alzheimer’s. It was hugely upsetting to me because it felt so familiar. In fact, the character Alice was able to get some temporary relief of her symptoms after rigorous exercise, which is something that I definitely noticed. I later would learn that it was the sweating and the resulting detoxification of the Lyme that was responsible for my temporary relief.

But when you’re 48 years old and experiencing memory issues, it’s terrifying.

tunnelBecause it was my brain and my mind, it occupied my thoughts constantly. As I was talking, I had to maneuver my way around words that would elude me. I continually would challenge myself to remember words or names, searching the recesses of my brain for relief. I couldn’t turn it off. As I was listening to the radio or television or to someone else speaking and I heard them use a particularly poignant term or expression, I would question whether I would be capable of accessing such a thought. This would happen hundreds of times every day. It was like there was a hard drive running in the background of my brain at all times, churning away as the conversations and experiences of life were unfolding in front of me. It instilled a constant anxiety that I just couldn’t shake.

jelloConversation. I’ve heard someone describe brain fog as the equivalent of trying to swim through Jello. That ALMOST gets it for me. I tried to describe it to my wife, but – surprise, surprise – I never could find the right words to describe it so she never understood. When I would have conversations, particularly at work, it was as if I would sink back into my mind, or down an echoing corridor. At those times, the idea of having to react to questions and to talk and articulate ideas felt impossible. It was terrifying. On top of everything else, it was mentally and physically exhausting.

Still undiagnosed, I continued to attribute the brain fog to hypoglycemia. I had what my wife and I began to call “good sugar days” and “bad sugar days.” They seemed to come in patterns, days or weeks at a time (more bad than good). Some days my brain fog would lift and I would feel like my old self; sometimes that would happen for a few days or even a week at a time. I would feel a euphoria at those moments, thinking I’d kicked the problem, but, inevitably and disappointingly, the brain fog would return.

Lyme CycleLyme bacteria live, die, and regenerate in cycles. That was responsible for the disappearance and re-emergence of my symptoms. As I searched for patterns, the one thing I noticed for certain was that when I exercised vigorously – running hard and sweating – I felt better. Early on, I had fear that exercise would burn blood sugar, which I was told my problem and to some degree was. So I stayed away from vigorous exercise for that reason. But somehow I realized that if I DID exercise, I felt better. And eventually I figured out that the HARDER I exercised, the more mental clarity that seemed to arrive. When I queried a doctor about it, she said that, yes, it made sense, that exercise had a stabilizing effect on the pancreas, which would bring corresponding stability to my blood sugar.

If you follow my wife’s blog, you might know that we would have to go “off the grid” to a Lyme Literate Doctor to get answers. It turns out that Lyme manifests itself differently in different people. While it’s technically true that I had hypoglycemia, the working theory of my new, Lyme-literate doctor  is that Lyme was stressing my adrenal glands, which, in turn, was triggering my pancreas to over-produce insulin.

The reason that exercise brought relief was that I was detoxifying and ridding myself of the Lyme symptoms.

The cycles and the fact that exercise brought temporary relief of my brain fog should have been a huge clue. The idea that my description of exercise didn’t trigger Lyme Disease bells for that doctor is symptomatic of the degree to which Lyme Disease, its diagnosis, and its treatment remain a mystery to a great deal of the medical community who thus follow incorrect paths in the diagnosis and treatment of patients who have had prolonged exposure to Lyme.

More tomorrow.


Jim’s Story

The Onset

It was a Thursday in December 2014 and I had spent the day in a hotel room in an Embassy Suites in Irvine, California. I’d flown in from Virginia early that morning and spent the day and most of the evening preparing for a final interview for the CEO position at a national association, which would take place the following morning.

I put the last touches on a Powerpoint presentation that I would deliver to a search committee and executive recruiter. All that stood between me and my appointment as the next CEO of the National Investor Relations Institute was a good night’s sleep.

insomnia.jpegAt 2:00am, I got a return visit from insomnia and, along with it, a healthy dose of anxiety. Doubt and fear crept into my mind. I would make a fool of myself. I would squander this opportunity simply because I could not get back to sleep. Something was wrong with me and I feared it was something bad.

At 5:00am, I finally gave up on the idea of sleep and rehearsed my presentation again, grabbed some breakfast, and got dressed. I arrived promptly at 8:30am for the interview and spent the next 90 minutes knocking the search committee’s socks off. Feeding off adrenaline I guess, I muscled through the anxiety and the sleep deprivation. I positively rocked the interview.

Vegas.jpegBecause I was to stop in Las Vegas for a conference on the way home, I headed back to the hotel. Around noon, I got the call from the recruiter. The job was mine. She underscored the fact that there had been more than 150 candidates and that my performance that day was magnificent. She told me to celebrate and that I should be happy, excited, and proud.

But I wasn’t. Because I knew that something was wrong with me.

hypoDespite what I’ve endured over the past three-plus years, I’m not, by my nature, a hypochondriac. I’d certainly begun to feel like one during the few months leading up to December 2014 as I’d headed to the doctor to recount a cascading sequence of symptoms that, in isolation, were diagnosed as acid reflux, gout, Vitamin B-12 deficiency, anxiety, arthritis of the neck, leaky gut, and gluten intolerance.

Three days later – at that conference in Las Vegas – the acute onset of hypoglycemia (low blood sugar) would become my reality. So would memory issues, word recall, and what I could only describe as “brain fog.”

We lived in Herndon, Virginia, right on the border of Loudoun County, which is known now as  Ground Zero for Lyme Disease. That one of the many doctors I saw over about a nine-month period didn’t even MENTION Lyme Disease is insane.

I could deal with the joint pain. I could deal with the constant cracking and popping in my neck. While insomnia and the resulting fatigue were not fun at all, that didn’t bother me that much.

brainfogThe havoc that Lyme was wreaking on my brain, though, THAT was as uncomfortable and disconcerting of a feeling as anything I have ever dealt with.

As a person who effectively made a living with words, it felt like my world was crumbling beneath me. I had been funny. I had been witty. I prided myself on being the guy who could take a problem, create the ideas to solve it, and articulate my vision to persuade and lead people to execute on those ideas.

I had confidence. I had talent. And I had balance in my life with three great kids and a wonderful wife.lost.jpgAll of that seemed to be in jeopardy. My brain was betraying me. And the more I searched for answers and got none, the more convinced I became that I would never get better.

Back to the doctor. How about para-thyroidism? Nope. Brain tumor? Nope. Diabetes. Nope. Early-onset Alzheimer’s? Nope.

“Hey, what about Lyme Disease,” I finally asked, this around April of 2015. Had I been bitten by a tick and seen a red ring around the bite? “Not that I remember.” Nope.

WRONG on so many levels, which includes that something like half of people who have Lyme Disease never remember a tick bite.

But it would take another 19 months before I would be diagnosed.


A Lyme Chapter Stuck in Edits

edits.jpegToday begins the story that I couldn’t (and wouldn’t) openly share with the whole wide internet  because it isn’t my story to tell. With permission and careful rendering, I’m coming out with a chapter that has been stuck in edits for almost a year.

Last fall, as part of my comprehensive lyme treatment, my doctor insisted that she also needed to test Jim for Lyme. (My personal version of  lyme had bypassed my joints and tendons to take up residence in my liver and kidneys. I didn’t understand why testing Jim, who had no issues with his liver or kidneys, could make a difference to my treatment plan.)  And then she explained that couples can “share” lyme. You know… the way couples share things.

therapy.jpegWell, crap. And that’s all I’ve got to say about that. For now.  Until we warn our kids and set up some  therapy appointments.

When I approached Jim about being tested for Lyme, he was relieved to turn the research over to the experts. (In our case, the experts are “LLMD’s” – Lyme Literate Medical Doctors.)  He had been scouring the internet on his own for answers for what seemed to be constant, but separate issues for over a year.

When we finally added it up, it seemed extreme to us that in the span of one year, he could develop hypoglycemia, frequent episodes of gout, recurrent heartburn, a strange, creaking neck pain, but most disturbingly, issues with word recall. He was repeatedly reassured by his medical team that these were isolated issues, each with an independent explanation.

Jim and I knew before the lab results were in that we had an answer.

JHoneyim had Lyme disease. As I wrote in May, Lyme doesn’t just give you one “disease.” It’s not like strep throat where a course of antibiotics knocks it out. Once you get a positive Lyme diagnosis, you have to start looking for the possibility of hundreds of different infections you could have been given, triage the most severe ones, and commence treatment. I remember calling him when the tests came in, and it felt like I was giving him good news. How twisted is that?

bulls eye

With a label like this, you’d think more of us would have the rash. You are lucky if you do!

 

Like me (and over 70% of lyme patients) Jim cannot recall having a tick bite. He never had a bulls-eye rash, because only 30% of people in the U.S. actually have that rash. But the number of symptoms he experienced suggest that he had been living with Lyme for at least three years. Wanna take a guess as to when my health really began to decline?

A diagnosis of Lyme is never good news. But finally having an explanation for a set of symptoms that makes question your own state of mind offers a giant “TOLD YOU SO” to practitioners who patted you on the head and sent you off with Tums.

hindsightFor us, relief and grief were knit together, with shock and fear intertwined. How were we to write the next chapter of our future while fighting a disease that threatened our future? And if you go back and re-read last year’s blogs with this year’s knowledge, our struggle (and erratic posting) makes a lot more sense. Stupid hindsight, instigator of regrets.

The next chapter is not my story….but because nine people have been tested and diagnosed as a result of this erratic little blog, Jim has bravely offered to tell his story – because it is very different from mine. And because we want to shout to the world the fact that no lyme diagnosis is the same.

We were devastated to learn that you can have two people in the same house at the same time suffering vastly different symptoms, caused by the same enemy.

And by now you can probably tell that I’ve moved from embracing to being pissed. I promise I’ll try again. But now, I will turn this blog over to my very own Iron Man.jennyandi

 


Catching Up: Puzzles, Storms, and Baby Goats

Hi, friends. When I last wrote in August,  I promised that once life settled down, I would explain why this story has tumbled out in such a haphazard manner.  If you are new to either “Plan B” or “Embracing it” the whole truth is that for the past 18 months we have been surprised by what seems to be a deluge of unwelcome storms.  Not that anyone is prepared for bad news…it always stuns the recipient into an unexpected state of bewilderment. I’ve read somewhere that “memory jolts awake with trauma’s electricity.” No one declares that “now would be the perfect time for a crisis.” And I would be lying if I said that “last year was the perfect time for a crisis.”

In order to catch you up, I have to back up a little.

zebraEighteen months ago, our little family was enjoying a period of calm after what felt like a pretty big storm. I had settled into a new normal and had become comfortable with my stripes. Thanks to a friend’s referral and some fierce advocating, a team at NIH had untangled my issues: I didn’t have an immune deficiency and an advanced liver disease. I had an immune deficiency and two DIFFERENT, but less advanced, liver diseases. On top of lyme. We began to understand  how each one affected me separately, but more importantly, how each one affects the other, 

puzzleand why no one to date had been able to explain how my puzzle fits together. I was making progress…my liver function quickly improved with new medication and less chardonnay, which in turn restored my energy. And gradually the dire diagnoses seemed much less….dire.

Lifted by the progress  I’d made and the knowledge I had gathered, I began telling the whole world blogging out it; partially to process the experience, but also to share information that seemed to be tucked in corners, hidden in password protected chat rooms, and out of sight of traditional medicine and nervous googlers. We

blog

are shaped by one another’s stories, and I knew that there were others out there, with similar symptoms and no explanations. My own answers were delivered by my doctors…but I had landed in their waiting rooms because of late night research, password protected chat rooms, and other advocates who were online telling stories that gave me pause and rang familiar, and armed me with the information I needed to get in the door.

togetherThe tribe around me kept us fed and loved and gave me the courage to march into plan B with an open heart, looking for the graces that came out of the brokenness, finding joy to soak the cracked spaces. I was the recipient of lavish care – and have volumes to write about how my people showed up to stand with me in the rain…but later.

So now, I think I’ve caught you up….by the fall of 2016 I was okay with where I was health-wise,  and was even well enough to jump into action when Jim and I needed to make an abrupt and necessary career change. We had talked for years about running our own firm. We had wondered what type of company we could create if we combined his ability to write, motivate, and quickly synthesize information with my ability to triage, plan, and draw teams together. Plus, our obvious humility had to be magnetic.

Jim.jpg

7 Marcom: A New Venture with the Guy Who Always Surprises Me.

What we didn’t anticipate was the need to test drive that dream so quickly, but we did – and it’s working. We are building a business by helping others tell their stories. We are serving clients who match our values, and we are doing it the way we had dreamed about – with humor, and, obviously, that humility, and a commitment to continue to listen until we understand the stories that need to be told.

But this story is not about our business. It’s about our life.

While our new venture was gaining momentum, it became obvious that Jim was not feeling well. We had each separately wondered why he was suddenly battling one new ailment after another, especially because he had always been our family’s version of “Iron Man.” Jim could deflect all manner of viruses, once escaping a bout of food poisoning that had taken down 90% of his father’s book signing party. Jim could leap over stomach flu and deflect bronchitis while the rest of us would be DYING from a simple virus. He would feel a cold coming on, go for a run, and be done with it. But once we were working together every day, we could no longer not say out loud that something was wrong.

I think that we perhaps gave ourselves too much credit for the way we jumped into action when we formed our company, for modeling flexibility, and showing our kids how to react to a curve ball. Maybe we lingered too much on our resilience, and missed some cues that could have been helpful. Hindsight has a great reputation for self-analysis but if we had been able to predict the future and peer into the corner into 2017, I think we would have asked for door number 2. Or plan C. Or, “Okay, give that one to me, but please, not to my kid.” And we certainly would not have said, What the hell….give it to all of us!”

beforeThe only knowledge that hindsight now confirms is that was we were very, very drained when things got worse. We had necessarily poured our hearts and energy into building a new business. We had accepted the limitations of my health. But whatever is the opposite of resilient..that’s what we were. I’ve come to learn that if you don’t really deal with the storms as they come, you will carry them around forever.

I have more to tell, but this is getting depressing and by now you need a dose of a baby goat in pajamas snuggling a pig.goat.jpg
More tomorrow. So much love,

Jenny