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.


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


Lakes, Ribbons, and Changes

Has it really been since May, when the baby giraffe was new and summer was just beginning?

 

I began writing last year to share my story of an unusual path to some unexpected diagnoses – a place for seekers to land when they google things like “liver function tests” and “lyme” and “immune deficiency.” It took more than two years to untangle my myriad diagnoses, and I could have used information paired with hopeful reality during the fun months of limbo where we had no idea as to what was going on. My issues are rare enough that the likelihood of finding someone with the same constellation of illnesses who also happens to blog about them is as likely as my sons voluntarily replacing a toilet paper roll. (And Kristina Alcorn, I had already written this when you posted about this same topic on FB)

 

lyme-slices-for-successful-treatment-recipe-e1466303620638-660x330I chose the name “Embracing Plan B” from a long list of titles – things like “Living the Life You Didn’t Expect” or maybe playing off the lyme theme with something like “When Life Hands You Lyme” or my mother’s favorite which is “What to do When it Seems Like Everything is going to Hell” but that one didn’t really convey the open posture and positive vibe I was going for.

I hoped that the act of Embracing could set the tone for the way I hope to live under a new normal. Embracing is different from surrendering…. or even accepting. Embracing implies a sense of welcome. Arms opened, hands outstretched, proceeding with acceptance while seeking a silver lining. Settling into a new normal the way we sink into the comfy chair. When you embrace change – any change – you stop railing against it, and you open yourself to the new opportunities the change brings. Even a diagnosis provides opportunities to find joy if you are determined to throw confetti during the storm.

My type A self found satisfaction when plans unfolded….as planned. When hurdles were jumped, contingencies mapped, and budgets met. But more often than not, life rarely happens according to plan, and in order to survive and move forward in any area, we have to nurture (and embrace) a sense of resilience.

But, if we’re being honest here… it became harder and harder to write because we had a year where the unexpected came from every direction. Where almost every single corner of life was in limbo, and writing it all down made it much more real. I’ve re-started this blog so many times I’m like a teenager learning to drive a stick shift. But every time we flipped the page to a new month a new issue cropped up. Lyme and its companions have so profoundly affected my family that the last thing I wanted to do was to write about it during my spare time. But a recent visit to our family doctor reminded me that I was gifted with a voice, a laptop, and an annoying habit of googling things and telling everyone about it; because he very humbly shared that the events of the past year (among my own family) has changed the way they view, diagnose, and treat Lyme disease. We’ve shaken them to the point of seeking additional training, and they’ve asked us to use our voice to seek funding for education and treatment, so perhaps it’s time to get back to this.

And when we do finally get to the end of the story of 2017, you’ll understand why my writing has been so unpredictable. But now it appears that I need to get back to this place, where I share how Immune Deficiency, Liver Disease, and Lyme collided in a way that answered many of my questions, but also raised more than we ever imagined.

And when you ARE sick…life would be so much easier if you could just freaking be SICK. But it seems that you still need to make a living, feed the children, pull the weeds, and sort the socks.

But since we last chatted, we’ve launched a new business, sold one home, and found

lake

More on the new place…let’s just say the view looks like this, and all are welcome 🙂

another. We’re chasing a lifestyle that feels simpler, and is allowing us to make a living, feed the children, and pull the weeds. And ever since we unclenched our fists and said “yes” to this new idea, and embraced the fact that this story – OUR story, was going to be an honest part of our future, the doors have continued to open.

 

Right now, three of us (AND OH MY WORD ARE WE MISSING THE OTHER THREE) are in Maine. The place where my soul lives. (At least until August 21st – when my body and belongings will move to another place that feels very much like Maine, and also very much like YES. More about that later. Back to Maine.) Here Jim, Dylan, and I are recovering from the craziest nine months we’ve ever experienced.

We go to sleep to the sound of rain on the tin roof, and wake to fog lifting over the water, the dock inviting us to bring our coffee down. We watch Dylan do his dryland routine on the deck, and dive into ice-cold Maine water to get stronger and chase his dreams, stroke after stroke. As you may have noticed, 18 year olds who are about to go off to college tend to be extremely smart, and are definitely wiser than their ancient parents. Dylan does not escape this same sense of “worldliness” that must make it really difficult to tolerate us.

mom and dylSo please don’t tell him until much later that he has joined the ranks of those I call hero, demonstrating resilience, wisdom, and a depth of character revealed by months that forced all of us to dig deep, try again, go against the grain, and find new paths through uncharted waters. Which is why it’s so good that we are here. In waters that we know. Suspending time for just a little bit longer before

Honey

I think we’ll handle the empty nest just fine. As long as we get Jim to use sunscreen.

we send him off to “go get it.”

So it seems that I am back, you will here more about our story, and I will keep talking about Lyme – how to fight it, how to find it, how to prevent it, and how to live with it. But for now, for a few days, our youngest is still with us. And because we’ve done this a few times now, we know that these few days are just a little sweeter. Here he comes now, wearing only a speedo, sperries, and a backpack, and looking a little bit ridiculous. And I love it. Talk Soon.

So much love.


LymeSplaining Part 4: (Diagnosis)

Lyme ribbon1This is my fourth installment on Lyme disease, as Lyme awareness month wraps up. (But I’m in no way finished talking about it.)  If this is your first time stopping by, you may want to back up and start here. The connections I’ve made with fellow Lyme warriors have further illustrated the fact that everyone in the Lyme community has a long story to tell about their path to diagnosis. Each narrative is different, and yet achingly similar. Contrary to popular belief, most Lyme warriors have no idea when they were been bitten (which means we can’t answer the “when did the tick bite you?” question;) we don’t display a bulls-eye rash (only 20 % of people in the United States are lucky enough to display the rash), and – like myself – have experienced months, or even years, of seemingly unrelated symptoms before we find out that the underlying issue is Lyme disease.

key-lyme-pie-diseaseWhen I received confirmation of my own Lyme diagnosis, I joined a club with over 300,000 “members” diagnosed with Lyme each year (a number that is estimated by the CDC.)  ILADS (the International Lyme and Associated Diseases Society) suspects that it’s much higher, with cases being vastly under reported or as yet undiscovered, hovering around 440,000. Let that number sink in for a moment. I will wait.

300,00 new diagnoses. Every. Year. That is higher than the annual rate of breast cancer diagnoses, estimated at 250,00. It’s more than the number of new cases of melanoma, which is around 87,000. And the only diseases that seem to eclipse Lyme are heart attacks (660,000 per year!) and diabetes, with 1.2 million diagnosed every year. You get the point. You have a new diagnosis, and a lot of company.

'Doctors scare me.'When I finally had actual, “verified on paper” proof that I had Lyme disease I experienced profound relief, grateful for an explanation for years of symptoms that didn’t seem to connect. (And, if you’re like me, you didn’t want to keep telling people that there is something else wrong, because you sound like a broken record. Or a hypochondriac.) I kept threatening to steal my Aunt Katherine’s line for her tombstone, which was: I TOLD you I was sick.” Recently a fellow lyme fighter, while waiting for test results, lamented that “If this ISN’T Lyme, I don’t know what I’m going to do.”  It was Lyme, and it ended three years of myriad symptoms that no doctor could put together.

My initial consolation was short-lived, because I quickly learned that I was at the beginning of a marathon, instead of reaching the end of a diagnostic mystery.  It’s a relief to be able to name the reason that you’ve had a strange collection of symptoms for so long….but because ticks infect you with multiple diseases, once you have a positive Lyme result, it’s time to start digging even more – because you have to discover what “gifts” the ticks left for you, and where they hid them. It’s like the worst scavenger hunt ever. And depending on how much time has elapsed from that tick bite, you will require different levels of care.

surgerycartoonI recently spoke with a doctor who said that she diverges from much of the mainstream medical community because when she sees patients within her specialty area and notices a cluster of other symptoms, she directs them to get tested for Lyme. This is the exception – not the rule. And she is diagnosing at least one new case per week. (And she is neither a Lyme Literate Doctor or an Infectious Disease Specialist.)

Consider the following stories – from my real-life and my online Lyme communities:  I know one brave soldier who suffered for two years with debilitating anxiety, insomnia, word recall issues, GERD, neck pain, hypoglycemia, and gout. Sensing something was wrong, he went to his doctor for every single symptom – which was not his typical response. Multiple times he brought up Lyme as a possibility and was summarily dismissed. Another lyme fighter in my circle had years of respiratory infections, bouts of bronchitis , migraines, strep throat, and repetitive sports injuries – all of which necessitated multiple doctor, specialists,and pt visits. None of which raised his Primary Care Doctor’s concern that it could be Lyme related. My own story echoes the same patterns – I had years of chronic UTI’s, searing pain in the bottom of my feet when I woke up in the morning, and unbearable exhaustion. None of the five specialists (gastro, rheumo, endocrine, family doc, urologist) – wait, that’s six. None of the SIX doctors I was seeing raised the possibility of Lyme disease. In all three of these cases, the Lyme question had to be initiated by the patient.

The doctor I mentioned above is lightyears ahead of her colleagues, understanding that our area is “ground zero” for Lyme, and when she sees patients with a constellation of symptoms, she says that she has to at least consider underlying Lyme infections.

But here’s the other problem….unless you were bitten by the nefarious tick within two weeks of any diagnostic bloodwork, the labs ordered by mainstream physicians are unlikely to produce positive results, even if you DO have Lyme…..which is why you need to find a Lyme Literate Doctor who understands the intricacies and the art of putting together a comprehensive panel of testing to unravel the chaos wrought by something the size of a grain of sand. And, as I mentioned a few weeks ago, LLMD’s (Lyme Literate MD’s)  rarely take insurance. Doctors have to contract with insurance companies, who allow maybe 15 minutes per patient, and they have to have a high rate of turnover to stay afloat. (I am not at all blaming doctors, by the way – this is the system in which they have to operate.) But it’s part of the “beast” that is Lyme.

To the delight of my sons, last fall I wrote about how I reached a diagnosis with a title that made them super popular with their friends. But the short version is that for two years, I had daily symptoms of a UTI, but only tested positive on the FIRST doctor’s office “dipstick” test. Though I remained symptomatic and miserable for two more years, I never again tested positive for a UTI, and was told that it was inflammation – or interstitial cystitis. But I knew it was caused by a pathogen, because every time I had to take antibiotics for other things, my UTI symptoms abated.

overwhelmedAfter pouring through some very helpful online patient boards  I found a group discussing interstitial cystitis, and many of them were seeing Ruth Kriz, a nurse practitioner who practices in DC, and was gaining some traction treating women with interstitial cystitis. Except, it isn’t really interstitial cystitis because there are actual pathogens that can and should be treated with antibiotics. Ruth found that 98% of her patients have one huge thing in common: Lyme Disease. Many of the people on the Inspire boards were flying ACROSS THE COUNTRY to see her. Ruth found a lab in Texas that does testing at the molecular level, and low and behold, I mailed my pee to Texas and finally got some answers. Layer upon layer of bacteria – E-coli, klebsiella, pseudomonas, and enterococcus. One year later I’m not symptom free, but I’m 75% better thanks to Ruth.

If you have recently received a Lyme diagnosis, or are suspicious of Lyme, here is a link to another lyme fighter  who had Ruth as a “guest” on her blog one day, to explain why the diagnostic process is so complicated. And her second guest post is here, spelling out approaches to treatment, and offering helpful resources.

If you are newBreathely diagnosed, you probably feel like you are drinking water from a fire hose. If you are a seasoned “brave soldier” (to borrow my friend, Kelly,’s phrase) you are probably sick of being sick. But I am confident that if we keep pushing, and keep sharing our stories, the “Plan B” that Lyme brings doesn’t have to wreck our futures. I believe the mainstream medical community will eventually catch up, but we have to keep advocating for better diagnostic tools and a cohesive body of knowledge about treatment that will help 1) get people diagnosed more quickly and 2) get them well a whole, whole lot faster.

lymeadeThe key, I think, is to try to make lemonade out of Lyme. To search harder for silver liningsThis tiny blog has led at least 9 people to get tested and diagnosed with Lyme since I began writing. I’ve cleaned up my diet. I’ve learned to say no to things to conserve my energy for the people who need me. I’ve lowered expectations for myself. And I’ve experienced such love from people who didn’t have to lean in during this time, who owed me nothing, yet poured themselves into making my life easier and lighter and bearable.


If you are a new Lyme fighter,
you owe yourself time to grieve before you make that lemonade. You will become that brave soldier, consuming rivers of information and medications, learning to advocate for yourself, and watching for side effects and detox reactions (known as herxing). Give yourself a few days to eat ice cream and watch movies, and then start thinking about how you can weave  joy into your new lifestyle. At least now you know what you are fighting, and you can write your own Plan B.

So much love,

happy place

My doctor prescribes two weeks of Maine lake therapy each year.

Jenny

I am battling Lyme, in addition to Immune Deficiency and Liver Disease. But…I actually feel pretty good. More about Jenny HERE