I really am here….

The calendar tells me it’s a big week, and I find myself paying attention to the commercials that promise a cure for “crepey skin.” The AARP flier should be a kick in the gut, but I’m thrilled to be crossing this milestone.  Get a glimpse of the alternative and suddenly 50 is a number I’m glad to see. When I last wrote, I was struggling mightily because we had yet to get approval for my immune-globulin infusions. (My “globulins.”)  All I could manage was a little work, a smidge of self-care, and stacks of apologies for forgotten appointments, unreturned phone calls, and incomplete projects. After being in “remission” for my CVID, the lack of treatment woke it up, kicked my hiney, and made my world very small. I had great plans to bring you up to speed on everything else, but that whole hiney-kicking thing made it impossible.

Despite the CVID-induced fatigue, I carefully guarded my “spoons” and was lucky to be able to travel to Ohio to “shower” our son’s bride-to-be with a party that would make Martha Stewart run crying from the room. (This all due to the magical touch of Kaitie’s Aunt Jill, whom I have decided to be related to because she makes the best icing I’ve ever tasted. Which basically makes her the best person in the world.) The end of the magical weekend ended in true Cudahy fashion. My plane landed in Charlottesville, where I raced to the emergency room to spell Ryan who had been caring for Dylan…who had succumbed to a bout of norovirus that was reminiscent of that scene from Witches of Eastwick. Google it if you don’t know what I’m talking about.

We are getting a daughter. How amazing is that?!

To continue our audacious February, despite the metal mask my mother made me wear and the gloves that never left my hands, (okay the mask wasn’t metal but it was supposed to be really good), and despite Dylan and I NEVER being in the same room during his convalescence, I began my own version of the technicolor yawn and Ryan got to chauffeur another Cudahy to the ER for fluids. And on it went. You know who fell next. Homeland Security just approved us to be part of their germ-warfare strategy, because we are nothing if not EFFECTIVE, leaving trails of….um…..DESTRUCTION, all over Virginia.

I am thrilled to report that I DID finally receive my immune-globulin infusions and my energy is gradually returning, my legs are “back.”  I’ve fought off multiple kidney infections and have kicked norovirus to the curb, and we are hoping that spring is more than a new page on the calendar, but also representative of the season that WE ARE DUE.

Stay tuned for updates on lyme treatments, liver disease, upcoming nuptials, and more. So much to say. We need to have coffee.


So, Really, How Are You?

I’ve been re-posting our lyme stories to bring new friends and readers up to speed with our family battle against tick borne illness and co-infections. Jim, Dylan, and I have spent the better part of two years recovering from what became a family fight against Lyme. People ask ALL OF THE TIME how it is that three of the five us of were diagnosed with Lyme, at times in disbelief, and at times scared that the same thing could be happening in their own homes. We’re still working through that very issue, but rest assured that we are NOT unique. We vacation together, we share the same pets, the same genetics, the same toxins, etc. More on that later.

As I wrote here, Dylan was diagnosed with Lyme last spring.  And as soon as he stopped swimming, his health immediately improved. The combination of long hours, stress, and wet sinuses meant that he battled constant mold and respiratory issues that plague many Lyme fighters with the mycoplasma co-infection. The torn groin – weakened by the tick that had made its home in the tendon – has healed and is no longer a problem.

morethanwhimsyI’ve learned so much from my 19 year old “teacher.” Dylan tackled his studies and new direction with a resilience that we are so proud of. It wasn’t easy, but he emerged relieved and proud. And when he landed an internship in Disney World, we had to say yes, even though it also entails a semester off of school. He deserves a little magic. Which is good – because he is working at Splash Mountain in the MAGIC Kingdom. Do say “Hi” if you run into him. He will be wearing a pretty silly uniform. His doctor has proclaimed him “practically healed” – with the Lyme seeming to be in remission. We have high hopes that the Florida climate will be just what he needs. Fingers crossed, prayers said, and we are so, so happy for him. He is rocking “Plan B.”

And I am feeling better than I’ve felt in ages. The CVID  (my immunodeficiency) is under control thanks to the Affordable Care Act that allows me to have the very expensive immunoglobulin infusions that enable me to get out of bed and work and cook and talk. I missed two months of treatment in January and February while an insurance hurdle was…hurdled…..and was subsequently “flattened” for several months, jelly legs and all. But I seem to have caught up, and am stronger than ever. My last round of liver function tests showed labs in the NORMAL RANGE. Can you imagine? I have two liver diseases and normal labs, The lyme-related infections that invaded my bladder, kidneys, and liver seem to have arrived at a plateau for which I am very grateful. No good day is unappreciated. If anything, I have to fight against enjoying my good days TOO much, as I am thrilled to finally have energy and reduced pain. (“I’m going to clean the house, plant flowers, weed the hill, cook a week’s worth of meals and go for a walk. Or maybe I should take it a bit slower.” )

And I should probably let Jim write his own update – and maybe he will – but for now I am happy to say (with permission) that he has also reached a level of wellness for which we are very grateful. He has achieved almost total relief from the joint pain, GERD, and brain fog that were ever present during the months before his lyme diagnosis. We credit his improvement to a huge commitment to his own health, which includes running, many rounds of pulse-dosed antibiotic regimens, and a dedicated effort to detox. We’re now looking at alternative treatments to come in and clean up the debris that the lyme toxins leave.

We’ve learned volumes about nutrition (as in lectin free diets), the link between brain and gut health, the importance of detoxing, meditation, healing “crises” and a radical commitment to self-care. I’ll share more in the coming weeks about the alternative treatments we have found helpful.

dylanWe DO look better on the outside, but there are still scars emerging that need time in the light to heal. We are battle-worn. What is rarely spoken out loud is the way Lyme ravages the entire family. Those not actually infected are left holding the shreds of morale and sanity while the rest of us try to get better. (We do try to take turns being crazy.) And because it takes so long to heal from Lyme, caregivers become weary and quite frankly, it just gets really old. There are many setbacks, bad days, and disappointments, and it’s ridiculously expensive. But the lessons we’ve learned will carry us over the finish line.

We’ve learned to set boundaries, to ask for help, to be vulnerable when lyme and stress steal our peace, and to be ever grateful for those who love us through a confusing journey. Tick-borne infections are insidious invaders that wreak havoc in different ways with every individual. There is not yet a “gold standard” of treatment because the CDC lags YEARS beyond what Lyme literate doctors know. Recovery can

hopebe unpredictable and varied depending on how early you catch the illness, and the state of health you were in when the ticks decided to invade.

I wouldn’t wish the past two years on anyone, but I also wouldn’t trade the lessons learned along the way.  I’ve learned to listen to wise counsel when those I trust nudge me to dig deeper or to let certain things go. We’re resurfacing with different priorities, new definitions of success, and an appreciation for our ability to love one another through some very un-lovely times.

Next week we have a wedding. Our son is marrying his lobster, and we are gaining a daughter. And we are ALL well enough to dance. (We just don’t all dance WELL.)

So much love.  God bless you all good.JJ

Next up: What in the world is a lectin free diet, and why does it matter?

More about Jenny.

 


Watching our Words Fly Across Oceans

lucky-like-a-four-leaf-clover-quote-1.jpgI have a couple of friends who at some point discovered they could find four leaf clovers all the time… practically every day. And one stroke of luck was all it took to keep their eyes to the ground, gathering more “luck” with each passing day. One friend even joked that she had to train herself to look UP because she was running into trees.

I NEVER think to look for four leaf clovers.

I have another friend who finds single playing cards, which is the strangest thing – but I’ve been with him when it happened, and he’s got an ever-growing collection. So. Weird.

Even my spouse experiences a phenomenon that sometimes freaks me out: he runs into someone he knows everywhere he goes. And I’m not talking about bumping into the neighbors at tar-jay.  I am saying that the guy RUNS INTO SOMEONE HE KNOWS EVERYWHERE HE GOES. He told me about this phenomenon when we were first dating, and I’ve personally witnessed it dozens of times now, but never as acutely as the time we were backpacking through France. Exhausted from a day of hiking in the Alps (I sound so exotic, n’est-ce pas?) we ducked into a very inauspicious bar for a drink…and there stood THE GIRL who had tried mightily to get his attention while we were dating. And there I was, on his arm, even after graduation, across the ocean. (Bam! And creepy!)

I am not claiming that God is playing 52 card pick up with one friend, while scattering extra four leaf clovers in the yards of others, and I don’t really think God planned the random encounter with the stalky girl in France.

But I do believe that when we begin to keep our eyes open for specific “signs,”  be it plant, playing card, or person, our eyes open wider and we start to take note when these occurrences become re-occurrences.

That is what is happening with this little blog. I am not blessed with the synesthesia that enables certain people to be more prone to finding four leaf clovers, and I’m WAY too clumsy to manage walking while scanning the ground for pennies or playing cards…but somehow this little act of typing out our story is connecting people to answers that have eluded them for months, or even years.

I am taking note of the opportunities that arise to share what we’ve learned – and this IS the part that I name “holy” – because while we have endured a really crappy streak of bad health partnered with bad timing, I know was born to talk and to teach…and maybe this is how the “hard” we’ve experienced will be redeemed. My collection of conditions is rare enough that I have to do a lot of my own legwork…but not so rare that there are not desperate people googling for stories and information that gives them the power and relief of connecting really scattered dots.

Our story is flying across oceans and I know that it’s not me. I post so irregularly because I AM struggling, and that’s the dance of talking about your journey while still on the road. My CVID is misbehaving because our insurance dropped my providers and I have not had infusions since January 1st. (More on that later.) The stupid “jelly legs have returned, and every time I’m in a crowd I’m down for days. Praying that tomorrow’s appointment brings answers and restored energy from infusions made possible by generous angels who donate their plasma.

I can’t believe how daunting those first months of treatment were, now several years into it…because now I know how crucial they are to my doing things like walking and cooking and washing my hair and not having to be horizontal after being in a crowd. 

And…as a recovering perfectionist, I keep waiting to feel all better to write and update and post. It’s still a hurdle for me to realize that life is good when I’m not, that I don’t have to be 100% (who am I kidding) 64% better to do the writing that is helping others realize that there are answers to questions that have, for years, felt like riddles. So I will keep trying to show up…and trust that these words land where they need to.

“When I let go of having it perfect, I learned the joy of sharing

 life with the imperfect.” – Kara Tippets, The Hardest Peace.

It’s Ash Wednesday…and Valentine’s Day…and my little brother’s birthday. 

So much love. 

my guys

Still Gloating.

 

 


New Clothes…New Heroes…New Year.

This is kind of the “season finale” in my series about the year we just limped out of, where Jim and I have been sharing our zone defense approach to Lyme Disease. Or rather, Babesia, Bartonella, and Mycoplasma. I should probably show you a picture of what Lyme can look like a year into treatment. Jim took seriously the need to detox during treatment. When you agree to swallow the handful of pills that this war requires, you have to also promise to detox your body from the Lyme spirochetes that the antibiotics “chop” off to swim like poison in your bloodstream…until you take measures to eradicate them. Because if you don’t,  you become even more ill. Fighting Lyme is a huge commitment.

wineJim took up running, cleaned up his diet, starting fighting those bugs, and is now 60 pounds down and HE NEEDS SOME NEW CLOTHES!  (I hesitate to tell him he looks good because I love him big and small, but he really does look good. Please don’t tell him. )

One year post diagnosis, the reflux is gone, the gout is gone, the hypoglycemia is only intermittent, the brain fog has mostly lifted, but his neck still creaks, and sometimes the effects of Lyme treatment make days less than fun to navigate.

But here’s my truth: he is THE PICTURE OF COURAGE, and he is a bad-ass Lyme fighter.

Having Lyme is difficult. DIAGNOSING Lyme can take an average of three years. But TALKING ABOUT LYME….can be even harder, because you risk being labeled a hypochondriac/tree-hugging/attention-seeking histrionic.

Raise your hand if you are a Lyme-fighter who has been told by a doctor that “they don’t really believe in chronic Lyme” or  “those diagnoses are really suspicious.” 

Raise your hand if you are a Lyme-fighter who has been told that “you don’t look sick”  – which is meant to be nice but sometimes feels more like you are lying about being sick.

Raise your hand if you’ve been told that you “just need to clean up your diet” or “you’d be healthier if you were more positive” or “I don’t get sick because I don’t take any pills.” Well…that is fantastic! So happy you don’t have to take pills. (Really!!)

Ticks are tiny, but Lyme is invisible. Until you walk into a Lyme-fighter’s bathroom, you don’t realize that they tell time by the color of their pill case.IMG_4625

Jim had begun his own fight against the Lyme that had taken up residence in his brain, joints, and digestive system. I was jumping through hoops trying to beat back the bugs that lined my bladder and kidneys, and threatened my liver.

sleep

Really. He slept for 36 hours..in the middle of our little cabin in Maine.

And I’m going to hold my breath through this one because it still hurts to linger on, but with permission, I am sharing what I alluded to before: we had no idea that Lyme would continue its assault on our family. Our amazing, funny,  smart favorite third son accepted a scholarship to swim for the University of Virginia in June before his senior year of high school. We were thrilled to see his hard work pay off and his dream become a reality. We cheered when he got his Olympic Trials cut and we laughed when he slept for 36 hours straight afterwards. It was a bright spot in a dark time.

And then he started getting sick. Every three weeks. Every time he ramped up training, added a practice or a dry land session. And it started and ended the same way every time, with body aches, a fever, sore throat, cough/bronchitis, and an ear infection.

His entire senior year was plagued by a cascade of different issues –  different,  but kind of the same. We watched him pick himself up and restart his training so many times we lost count. He fought respiratory infections, migraines, groin and tendon injuries, and even a dangerous infection following a routine vaccine. He endured months of frustration when he wanted to be training and enjoying life before the real work of college and Division 1 swimming began. We LITERALLY saw dozens of specialists and appointments. And yet again, highly pedigreed experts kept assuring us that these were  isolated and easily fixed issues.

The domino effect came to a crash landing with Dylan’s diagnosis of Lyme disease in May.  I still haven’t found a way to describe how it felt to have my own illnesses, a spouse in treatment for Lyme… and a really sick kid. Except to again say that I’m so glad we went first.  When offered a longer, but more tolerable course of treatment, my new hero said “No way, I want to swim, hit me hard.” Watching him tolerate the side effects of treatment while his friends were at beach week completely undid me. I unraveled so quickly and so completely that I’m still not totally…raveled. Not in front of him, but as soon as his back was turned,  and at times to the point that my favorite second son had to literally pick me up off of the floor.

And I still cannot fathom the fact that WE DID NOT SUSPECT LYME in him until months into the crisis. We kept thinking we were at the finish line.

It did not occur to us that it could be Lyme…BECAUSE IT LOOKED SO DIFFERENT. Imagine…both parents in treatment for the same disease, yet WE were still shocked by the answer. This is a problem.

We did only what we could manage: we drew in, closed the circle, unable to engage in life beyond work and Lyme-fighting. I became completely  out of touch with my own issues – my mind disconnected from my body, swallowing the pills but not at all focused on my own healing. Aware that the only thing that propelled me was adrenaline and the churning of my stomach, trying to get a sick kid ready to go to school, study engineering, and compete at the highest collegiate level. I could respond to the urgency of the moment, but I crumbled and wept when not “on duty.”

dylan

This is what got us through…we held on and tried to smile.

Our definition of success is not what it used to be. Despite a strong start, our new hero decided that he has a different dream. He wants to be happy and healthy, and experience all that life in a rigorous program at a top-tier school has to offer. Swimming while fighting lyme and taking a grueling course load was too much. And life is too short.  Bravery looks different to each individual….but to us, it looks like an 19-year-old deciding that he has a different dream, and watching him step forward to own it when it might not be the popular decision. 

I realize that by going into detail about my Iron Man and my 19 year old hero, I’ve neglected the other heroes in our story, the ones who have propped us up. The 23 year old who held his insane parents together when we moved out of our home 48 hours after dropping our last kid at college. The 26 year old hero and his fiancée who shower us with hilarious stories and thoughtful gifts and look for ways to make us laugh. Friends and family who moved into our mess and noted, but kindly ignored, how insane and distracted I was. Loves who sent cookies and ham and magic mac and cheese, and painted giraffes, and painted rooms, and packed boxes, and let us fill their yard with dumpsters full of trash. Friends and family who understand that while we are at our core the same loud people who love and laugh and talk over one another, we are also wounded and guarded and sometimes we have very bad days.

We have a long way to go, but we have come so far.

And we’re not going to keep quiet about it because our story is being repeated in homes all over the country, and especially all over our state. Our kind doctor has shared that she has entire NEIGHBORHOODS in Northern Virginia who are sick with Lyme. Not just entire families – but NEIGHBORHOODS. And we’re not hearing from them because THEY ARE UNABLE TO EXPLAIN IT.  I’m meeting new doctors in our new town, and I’ve already had two of them whisper that Lyme scares them to death…because of what they don’t know. And when they share the treatment protocols they are required to offer, it makes me scared for Lyme patients who think that their two-week course of doxycycline will knock out terrifying neurological Lyme symptoms. And if there is one person in a family with Lyme, chances are pretty good that at least one of your other family members has it as well…since you tend to hang out in the same places.  And trust me, it can and does look different in each person. Lyme is a family epidemic.

23755137_10214539546424021_6756643078523320436_n

Sometimes we pile on all of our warm clothes to catch a sunset.

 

The hard edges of our lives don’t make life all bad. I know some of this will be redeemed.  Anne Lamott writes that

 “Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don’t give up”. 

It’s a choice to keep laughing, to keep getting up, to seek daily joy, and to keep looking for answers. Our “wins” look different now, with a sunset picnic on skyline drive, or an evening of Netflix after working all day. WORKING. We can WORK! THAT is amazing.

So much love. Happy New Year. God bless you all good.

 

 

 

 

 

 

 


Tidings of Comfort and Joy

Happy Holidays, sweet friends and readers. I am picking up our story from my own laptop, after turning this little blog over to Jim, who shared his journey with Lyme Disease throughout the month of November.  One of the reasons Jim offered to write his own lyme “biography” is to reiterate what we have experienced in our own home, now three times over: every Lyme story has a different plot. Jim’s story resonated with so many Lyme sufferers, he almost broke the blogosphere. (A bit of hyperbole, but Word Press kept sending us kudos like “Boom!” and “Bam!: and “Way to Go!” which felt way better than it should have).

pills.pngAfter suffering for two years with an unknown enemy, the relief of a diagnosis gave Jim the energy to forge ahead with aggressive treatment. And within 20 MINUTES of swallowing the first handful of pills, the fog began to lift and Jim could again think and process information without the feeling of being in a tunnel. (If you’ve ever passed out, and on the way down noted that everyone’s voices were getting muffled and farther away…THAT’S how Jim described the Lyme brain fog.)  But he also 25994917_1643213659101154_3887435746114689873_nimmediately began to experience the downside of treatment, the side effects he had been warned about. Hindsight only offers the confirmation that we should have been — and needed to be — better prepared for what his regimen would entail. We could have put some buffers in place and asked for more help. We could have shored up the weak spots so we weren’t blindsided by what was to come.

So this is where I resume the story.  During the fall of 2016, armed with new treatment plans, Jim and I poured our energy into building a company and enjoying the bright spot that was our youngest’s last year of high school. We knew that our bandwidth for crisis was pretty thin, minuscule actually. But it also never occurred to us that Lyme would continue its march through our family. And because it’s so difficult to understand what’s happening when you’re in the middle of it, I now see that maybe the blessing of Jim and I “going first” was the gift of showing our kids that Lyme can be fought, and that seemingly unrelated symptoms can be (and often are) part of a systemic problem. That you aren’t crazy or lazy or burned out or a hypochondriac because you get sick every three weeks. And when this is all said and done, I think we will all agree that having Jim and I “go first” in our Lyme story was really the best scenario.

KillI may now be grateful for the benefit of hindsight, but I’m even more grateful that we couldn’t peer around the corner into 2017. Day by day, and sometimes even hour by hour, was about all we could take. We had waded so far into the hell of Lyme treatment that we were unable to stop and ask for help. By the time I was able to surface and breathe and assess where we were, it was hard to even articulate what we needed. What we needed was a do-over, a time out, or a pause button, because the hits just kept coming.

Even now, one year later, relief washes over me when I think about where we were last year. I was in the middle of a time-consuming and experimental new treatment, Jim had begun an even more aggressive and unpredictable regimen, and a third diagnosis was cooking and looming. And THAT ONE absolutely wrecked us, leaving us stunned and changed and temporarily wounded. Friends and family were bewildered by what we couldn’t articulate…that three of us were sick and stressed and we didn’t have time to “do it right.”  I have leaned in for many families dealing with cancer and divorce and hospice and other unspeakable tragedies. I have trained caregivers and given countless talks about “the ring theory of care and how to walk into the mess that comes with illness and the emotional effects of treatment. So many asked “how can we help” or “just let us know what we can do” and some were offended that we didn’t. But we couldn’t — that  whole frontal lobe thing that enables someone to parcel and process and triage was frozen in crisis, because we DID NOT HAVE TIME to think about what we needed.

Jim and I have shared the highs and lows of parenting together. We were the keepers of tradition and family jokes and, while far from perfect, we tried to at least set an example with a shared love that guided our “ship.” But both of us were sick with the same disease, and affected in very different ways, and it appeared that one of our kids was being thrown into those waters as well.

So yes…this time last year I was frantic and frenetic, and I cried. Every. Single. Time. I left the house. And all I could think to do was wipe my face and walk back into it and do my best, which was often NOT.

As it has all along, this story will tumble out haphazardly, and only with permission. But I’ll give you a glimpse of where we are now. Because out of our little circle of six, half of us have been sick, and all of us are somehow scarred. But I will keep writing because every time we “put it out there” someone else raises a hand to ask a question about Lyme, and that redeems our mess even more. I have a pile of books that keep me going, and lately Anne Lamott has best reflected my scattered thoughts. 

“You are going to feel like hell if you never write the stuff that is tugging on the sleeves in your heart — your stories, visions, memories, songs: your truth, your version of things, in your voice. That is really all you have to offer us, and it’s why you were born…”

After Jim and I watched Dylan cross the stage at high school graduation this past June, we looked at each other and realized that we no longer had a reason to stay in the DC area. As our nest emptied, we had the option to live where we wanted. We were finally well enough that we decided to stop running our firm as the “in between” option as we 

Light1sought to land more permanent positions. We decided to stop waiting for things to happen FOR us and instead to make things happen BECAUSE OF us. We assessed our resources like the crew trying to land the Apollo 13 and decided that  7 Marcom was going to represent the best we had to offer. We wanted the freedom to help companies tell their stories and guide clients to FIND their stories. We wanted to run a firm with humor and integrity and excellence, and do it in a location that feeds our souls and inspires great stories.

I read recently that you know you’re finally in the right “flow” when things keep happening that confirm your “hunch” or your new direction. Some call it coincidence…others name it grace. Both spark a swell of gratitude that floods you with the courage to keep stepping forward.

We put the home we loved on the market and sold it after one SHOWING. Not one day, one showing. For more than we listed. That same day, through another one of “those coincidences” we found a home close to Charlottesville. At the base of a mountain, right next to a lake, in a neighborhood that looks and feels like Maine.

Tidings.PNGOur new life is not rosy and perfect.  The lapses in blog posts usually represent a battle yet untold. We’re still shell-shocked, but we are also doing better overall (There’s that word “brutiful” again — our life is at times both brutal and beautiful). But we have the time and space to heal and deal with the wreckage of the past two years. Our new business is thriving….and I am proud that it DOES represent the best of us. We are working together, loving each other, and beating back the disease that still tries to threaten our future.  And as I’ve said before, we’re doing it. Maybe part of  “doing it” means admitting out loud that Lyme tore through this family like a storm we never saw coming. But it also uncovered strength that we never knew we had. The past year taught me to cling to what I name faith, knowing no one was out to get us, but that God was weeping with us, rooting for us, and giving us the courage to hold on, because something better was coming. 

“It would help to begin by admitting the three most terrible truths of our existence: that we are so ruined, and so loved, and in charge of so little.” ~ Anne Lamott

More of our story will tumble out in a few days, but for now…enjoy the rest of your holiday. Stay warm, and hydrated, and please take Uber. And as “Saint Anne” says,

God Bless You All Good.

 

 

 

 

 


Jim’s Story – Part 4: The Lyme Stigma

physicalI had my annual physical this week. We recently moved to a new area, so it was a new doctor, obviously unfamiliar with my medical history, so I came equipped with my story and my experience with Lyme Disease. For what it’s worth, I liked the doctor a lot and he’ll be “my guy” moving forward. That is, for everything other than for Lyme Disease.

This doctor, like so many other doctors and others with whom I’ve engaged over the past three years, doesn’t seem to “buy into” the concept of chronic Lyme Disease.

The physical began, as these things usually do, going over my vital statistics. As mentioned in a previous post because vigorous exercise is a great way to detox during Lyme treatment, I have been exercising like a maniac over the past year. Beyond detoxification, there have been other positive effects of the exercise. My weight is down considerably and, with it, my blood pressure and cholesterol (OK, there’s part of me that’s just bragging right now).

Unfortunately, the exercise has done nothing to cure my bald head (there, how’s that for corresponding humility?)

doc.jpgWhen the doctor asked what else we needed to talk about, I took about five minutes to talk about my Lyme diagnosis and where I am in my treatment. The doctor asked not a single follow-up question about it. Within a few minutes we were back to talk of LDL/HDL, diet and exercise, and college basketball.

Again, I’m taking nothing away from this doctor because in all other ways, he seemed completely awesome (I took some exception to his insistence that it was time for a colonoscopy, but I don’t consider him to be a sadist or anything).

The doctor’s seeming indifference or lack of curiosity about my Lyme came as no surprise.

lymedocMy previous general practitioner, whom I also consider to be awesome, often said this: “When I hear hoof steps out the window, my first thought is ‘horse,’ not ‘zebra.’” What he meant by that was that his first thought is to seek the answer that makes the most sense. That effectively was his rationale for he and his colleagues swinging and missing on my Lyme diagnosis for two full years.

That is why, when I arrived to that practice with acid reflux and neck pain, they recommended Prilosec and Advil. When I arrived with the terrifying symptoms of hypoglycemia, they suggested smaller, more frequent meals. When I came to them with brain fog and word-recall issues, they checked my records and chalked it up to a Vitamin B-12 deficiency. And when I came to them with excruciating pain in my feet and shoulder, they diagnosed it as gout, this despite the fact that my uric acid levels were normal.

When I put it all together and suggested that Lyme Disease might be the culprit, they ordered the standard test that never would come back positive for someone with “chronic Lyme.” So they shook their heads – “No, you don’t have Lyme Disease.”

westernAnd, finally, when I came back to them with the results from what is called a “Western Blot test” that showed I was positive for Lyme, they finally acquiesced. My Lyme diagnosis now met the criteria for Lyme established by the Center for Disease Control.

If convincing doctors is that tough, “believe me” when I tell you that explaining Lyme to friends and family is even more difficult, partially because it is difficult to describe, especially while under the effects of brain fog. It’s also difficult for others to imagine and understand how much havoc Lyme can wreak. Eyes start to glaze over if you begin listing problems ranging from brain fog to sore feet. Invoking the CDC during a family-dinner conversation will not generate understanding. The next sentence is more likely to be, “Pass the carrots,” than “Oh, the CDC, now I understand what you’ve been going through.”

And I think I understand. Before three members of my own family were afflicted, I knew precious little about Lyme. It seemed like the “go-to” malady of the week for the hypochondriac set. “Guess what old Aunt Myrtle’s says she’s got this time? Apparently, she’s got that Lyme thing!”

lyme spellingIf you have cancer, that’s readily understood. If you have a broken leg, hey, there’s the cast – how could you doubt it? If you have pneumonia – “oh, pneumonia!” – people can identify with THAT.

But Lyme Disease?What is that? That must be all in Jimmy’s head.” Putting aside the fact that Lyme actually WAS “in my head,” I can tell you that the stigma associated with “chronic Lyme” makes it something that I, at first, didn’t want to tell anyone. Once I did, the judgment I’d anticipated would accompany the diagnosis was palpable.

I found this passage from “Psychology Today” that provides a relevant perspective:

Being repeatedly told that we look and sound fine can lead us to think it’s our fault that we’re sick or in pain. We can be overcome with guilt, as if we’re failing those we care about, and we can feel embarrassed that we’re not living up to what we’ve convinced ourselves other people are expecting of us. The culture around us reinforces these feelings of guilt and embarrassment by sending the message that no one need be sick or in pain. We’re bombarded by news stories and advertisements telling us that we need only do this or do that in order to be healthy.”

Just have a positive attitude and it will all go away.

lyme2That’s how I felt when the symptoms I described were dismissed by doctors and by many others. Just last week, when I met with my “Lyme doctor” and I told her that I would be having the aforementioned physical the next week with my G.P., she suggested that I be purposely vague about my Lyme treatment. This was something I was unwilling to do, but seeing my new doctor’s indifference to what I was describing, well, it was both familiar and understandable.

And I want to emphasize that point a third time: I understand why people don’t understand. This isn’t to point fingers or seek sympathy. I’m speaking directly to the people with Lyme and who have the symptoms of undiagnosed Lyme. Many of your friends and family will NOT understand. Just this week, after reading my first blog post about Lyme, a family member emailed me and asked “Why did you keep this to yourself?” I presented two or three examples of when we had talked about it and (I think) the light blinked on.

It is that general lack of awareness and the corresponding stigma that contributes to the proliferation of Lyme Disease. There’s not one single, tell-tale symptom. Lyme will masquerade as one or many other things. And the general misunderstanding, the perception by many that it’s not “real,” and the associated label of hypochondriac or “perpetual victim” that accompanies it, well, that hurts. As you’re beginning your ascent out of what can be a deep hole, negative perceptions and doubt of those around you make you feel that much more isolated and hopeless during a time when you need support the most.

lymeBut that can’t stop you from seeking diagnosis and treatment. Because chronic Lyme will NOT go away without sustained treatment. Find the right doctor. Look for the right types of support groups. Find trusted resources that will lead you to the right diagnosis and the right treatment. It’s really tough. And, don’t expect that those around you are suddenly going to sprout the ability to listen, comprehend, or respond.

This is particularly true because, if your experience is like mine, you first told people you had several other things wrong with you. “I have arthritis.” “I have acid reflux.” “I have gout.” “I have meningitis.” “Oh … wait … I don’t have any of those things; I have Lyme.”

You’re the boy who cried wolf. You’re Chicken Little. You’re Darth Vader. OK, maybe you’re not Darth Vader … but C3PO, yeah that fits. C3PO was an incessant worrywart. So, you have to think about people looking at you like Han Solo looked at 3PO during the Empire Strikes Back. When 3PO was screaming about everything that was wrong on the Millennium Falcon, Han Solo’s response was to scream: “Shut him up or shut him down.”

So, maybe, my whole point is just this. Figure out who the R2D2 is in your life and talk to him.

 

 


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.