Further Down the Lyme Road

wristHi friends. I am the queen of false starts…gaining momentum and then pushing this little blog to the side when life gets crazy. Or when I fall and break my wrist and need surgery to screw it back together and am handicapped by one-handed typing and type for a living and can’t bring myself to type during my free time.

But then again, I do have frigging Lyme, which is probably the real reason for my inconsistency.

ANYWAY. This post may be super boring if you don’t have Lyme or you hate posts with lots and lots of links. But I owe you an update.

In July I shared a bit about the detour we were taking with Lyme treatment, going off the beaten path to try new (and alternative) therapy for the illness that has torn through our family. Three months later we can say that we are making progress and gaining confidence that this detour is a permanent route. I threw a lot of information at you in this post,  but I am going to try to offer a simplified explanation of what we have found to be helpful. When we adopted this new protocol, things began to get dramatically better.

We continue to read, research, and interview practitioners as we seek to understand the complicated conundrum that Lyme presents. We were recently in the office of a new, local LLMD (yes, local to Charlottesville!) and she affirmed our recent epiphany that healing is a “mind, body, spirit” endeavor.  The descent into full-blown, chronic Lyme most likely did not happen overnight, and is probably the result of inflammation, diet, genetics, or circumstances. And, of course, ticks. You could have Lyme “simmering” below the surface only to have a virus, tragedy, or vaccination (yep) bring it to a boil. (And we are living proof of all three….one of us crashed after a vaccine, another after an infection, and a third after a difficult transition/season.)

 Important aside –  I am not anti-vax. I am pro-vaccine education. Many of us with Lyme have compromised immune systems and will not tolerate vaccinations as we did prior to the invasion. Our son ended up in the emergency room with cellulitis following a routine vaccine required for college. If we had only known what to expect afterwards. 

joyGetting back to the topic at hand, I want to share a simplified version of what we have done to gain traction with regards to overall healing.  I wish I could report that it was as simple as a medication change, but that is so NOT the case. In fact, we were probably harmed by staying too long within the confines of mainstream medicine and the overuse of antibiotics. What truly helped us turn the corner was the realization that healing requires a whole-life approach. (A mind, body, spirit approach.) I will break this down into concrete steps, but before I do I need to offer the requisite disclaimer: this is not prescriptive. It is highly individualized based on genetic testing, bloodwork, and lots of time with a Lyme practitioner. Do not adopt these thinking they are a panacea for your own battle with Lyme, because it is just that: YOUR battle, but rather an overview of the holistic approach that is finally working for us.

  • First, we underwent genetic testing. Your unique genetic makeup determines how your body tolerates pesticides, mold,  gluten, dairy, medications, detox and more. It is so much easier to make changes when you understand your own genetics. This takes the guesswork out of an already-complicated process. We used Genesight, while others have used 23andMe or DNA Connexions.
  • Next, a consultation with our LLMD helped us map out a new dietary and supplement regimen using the genetic testing to inform our plan, which included:
    • A more alkaline diet to reduce inflammation, organic vegetables and fruit in season (due to pesticide intolerance), pasture raised eggs, chicken or beef, and NO seafood due to higher mercury levels. We also had to eliminate gluten and most dairy. Kale smoothie, anyone?
    • We added supplements of glutathione using Immunocal (denatured whey protein) to make up for the fact that two of us lack the gene that makes glutathione, an antioxidant that supports detoxification and promotes healing. In a non-Lymie person, the body produces and uses glutathione to help detox the liver, and break down foods with gluten and dairy. Lymies who don’t make glutathione need to take OUT the gluten and dairy and add in supplements to replace it. We also added NAC  (N-acetyl L Cysteine) because it plays nicely with the glutathione to promote healing and detox.
    • These changes were combined with supplements we were already taking: D3, Zinc, Vitamin B6 and 12, liposomal vitamin C, and probiotics.
  • We learned as much as we could about the role of detoxing and added in a more robust regimen of epsom salt baths, bentonite clay soaks, infrared sauna, and detox lemonade. We are lucky that a “salt spa” with infrared sauna has opened in our town.
  • We began a very tailored herbal protocol. This is so individualized, and must be done under the watchful eye of a LLMD. There are many herbal protocols in the Lyme world (Vital PlanByron White, Cowden, Buhner, Klinghardt.  to name a few). The herbal therapy has to be done EXACTLY right, at the same time of day, and also requires the above dietary and lifestyle changes in order to be effective. Let me repeat: Do not try this on your own!
  • We embraced meditation. Meditation is gaining respect in the Lyme community for its role in calming the mind, reducing inflammation, sparking the production of serotonin and dopamine, aiding in brain plasticity, reducing emotional lability, helping with sleep, increasing pain tolerance, do I really need to keep going? I’m absolutely NOT KIDDING: some of our greatest leaps in recovery came after sessions of guided meditation.
  • And finally…the spirit part. Lyme is insidious in its assault, with cardiac, neurological, reproductive, hormonal and musculoskeletal repercussions. It can take months, or even years, to arrive at a diagnosis,  there are LOTS of setbacks, healing is hella expensive, and there are no uniform guidelines for treatment. And all of this happens while life marches on. It would be an understatement to say that it’s a spirit-killer, often robbing us of relationships due to isolation and broken commitments and even altering our perception of ourselves. (Now I’m sad.) It takes a dedicated effort to seek joy and to pursue healing, but it is absolutely crucial to the process. It’s also the last thing you feel like doing when you are in a healing crisis. A new Lyme treatment center in town is offering EMDR (Trauma Therapy) as part of the program, because they rarely see Lyme patients who DON’T have PTSD.

anneI doubt I’m alone when I say that I still hold this progress tentatively, afraid that the other shoe is going to drop, or that we will hit a wall and experience more setbacks. I know I need to work on that mindset (yet another theme for therapy) but it’s so easy to lapse into self-preservation mode as we climb out of the pit of chronic illness. We need to stop reading about joy and more actively chase it, we need to exhale and celebrate the progress. More later.

Until we meet again, God bless you all good.

Jenny

When I let go of having it perfect, I learned the joy of sharing life with the imperfect.” 
― Kara Tippetts, The Hardest Peace

 


Lyme Lessons Learned

About a month ago I promised to share some of the knowledge we’ve accumulated about Lyme Disease as we pass the two year “crapiversary”  since our diagnoses. (I say “OUR” because 3 of the five of us have had Lyme. ) I always begin with the same preamble reminding my (amazing) readers that I am in NO WAY a Lyme Disease authority. Sadly, my French and Spanish degrees did not qualify me to dispense medical advice. (Mais, pourquoi?) I can’t lose sight of the inspiration that originally motivated me to begin writing. From a practical standpoint, I had endured years of limbo, unable to connect the dots that finally led to a diagnosis. Newly diagnosed Lyme warriors don’t leave the doctor’s office with a tri-fold pamphlet detailing their treatment regimen. No one sits down with you to explain what needs to happen, or how long it will take.

But I also wanted to share the hope that drives this little blog, which is to say that we have a choice to make, to sink or swim. To keep pushing for answers and glimpses of hope when the days get long and progress is hard to measure. And the reality is that we are getting well.  We are getting well DESPITE the fact that a lack of consistent information initially impeded our diagnoses and recovery.

If you are at the beginning, and are looking for information on our diagnostic process and early symptoms, our story starts here.  As so many Lyme warriors do, at about 18 months into treatment we hit a wall. We had settled in with a Lyme Literate physician and a course of treatment that seemed to be working…until it wasn’t. Left with lingering and troubling symptoms, we were at wits end, or whatever one step farther from wits end is, and anyone who knows us can vouch for that. We needed a new plan, but there was no road map. I carved out a large chunk of time, taking a week to do a very deep dive to see if there were new treatments, studies, or physicians that we had missed. I interviewed doctors by phone, read approximately 273 books on Lyme recovery and found some of the most redemptive stories from physicians who’ve struggled with Lyme themselves and discovered that the treatment guidelines were woefully inadequate. Many of those physicians recovered after DECADES of illness and emerged with a resolve to change the course of Lyme treatment and education, armed with the understanding that recovery has to be more holistic than they ever imagined. And I wish I had read those stories two years ago.

But the most helpful and amazing direction came from friends of friends and IMG-6390friends of family who have RECOVERED from Lyme. Recovered as in zero Lyme in their bloodstream after years of being ravaged by the disease. I went a little nutty, huddled in hotel bathrooms on family trips, talking on my cell phone to people willing to share what finally got them well, scribbling notes and asking questions. And I owe a debt of gratitude to everyone who participated in this endeavor.

We are back on track and the new plan is working. I’m going to throw some things out at you, in the stream of consciousness style that drives my husband insane, and I’ll come back with more details later. These are the things that I wish I had known from the beginning.

Allow me to step aside for a moment to reiterate that we are doing SO MUCH BETTER. Our original treatment regimen took us about 90% of the way there…but we were left with some hard to treat symptoms that made life difficult. I have full faith that we will also be among those 100% success stories, but what we didn’t know and what we didn’t DO did hurt us…and that’s why I’m offering my “lessons learned” along with some links. I encourage you to take a breath, do your own deep dive, and arm yourself with questions for your doctor. Our recovery is requiring a more holistic, comprehensive  process than we ever imagined, but it has also introduced life practices that we will never abandon. Once I wrapped my brain around this holistic lifestyle, we started to turn the ship around. You guys, we sit in salt caves and sip herbal tea on our front porch.

First of all: A positive diagnosis   is a blessing and a curse. For us, it was a relief because it explained a constellation of symptoms that confounded our doctors for several years.  There was finally a name for it…and we remain among the lucky few who were probably diagnosed within 2-4 years of contracting it. A positive diagnosis is an end to the constant preoccupation that something is really wrong with you. And it’s also the beginning of a marathon, as you begin to track down which co-infections you have and prioritize what needs to be dealt with first.

If I could do it over again,  I would take extended time off BEFORE TREATMENT to research treatment protocols, nutrition, genetics, inflammation, and detoxing. Learning about Lyme is like drinking water from a fire hose. We have found the most helpful resources from Lyme Literate doctors. Our doctor was on the board of ILADS, and she had a deep understanding of how genes, nutrition, and inflammation shape the course of illness and recovery.

I wish I had known that the same tick can bite two different people, and cause vastly different symptoms because of multiple factors at play. Dr. Bill Rawls, a Lyme survivor and author of Unlocking Lyme  calls these “immune disruptors” and they can change the course of your disease and your recovery. These factors include: poor diet (a diet full of processed foods), chronic emotional stress, toxin overload (exposure to mold and other environmental toxins), chronic inflammation, undiagnosed food sensitivities, job stress, job loss, leaky gut, energy stress (the overload of electrical devices, microwave towers, etc.), family stressors, or spousal illness. And some of us can say yes to all of the above. It’s not simply the ticks themselves that wreak all of the havoc on your body, but the inflammatory response caused by the above disruptors that can delay healing. I vastly underestimated the role of these immune disruptors, and we have had to peel back layer after layer to begin making progress again.

We were lucky that our doctor spent a very long time explaining the role of nutrition and supplements, offering a mini seminar on what the body needs in order to heal. She explained that you’ll know you are “getting it right” when your symptoms suddenly worsen. This means you are experiencing a “herx” – a die off of toxins, and you need to then go through a very specific detoxification process to eliminate the “bad guys” from your bloodstream and liver, otherwise you’ve invited the enemy out for battle and you just let them settle in. So yes, you get sicker before you get better. (I was skeptical of this until I experienced it, and witnessed family members experience it. But it does mean that it’s starting to work.) Often the detox protocol is tailored to specific symptoms and co-infections but the ones we’ve found most helpful are epsom salt baths, bentonite clay, infrared saunas, and various herbs to help with the die-off (herxing) symptoms.

I will write more on the role of detoxing  later – but one of the most important pieces of information to have on hand is whether or not you have the genetic make-up to actually heal and detox. Some of us are born with a genetic defect called the MTHFR gene mutation. THIS IS SO IMPORTANT TO KNOW ABOUT that I graced it with capital letters. MTHFR is the enzyme necessary for making glutathione, the enzyme NEEDED in order to get well and detox. If you have the MTHFR gene mutation, you don’t make enough glutathione and you will need to take supplements AND change your diet in order to produce it, so that you can actually detox when you start treatment. Otherwise you will take the medicine and be unable to rid your body of the die-off toxins. The MTHFR mutation  is discovered via blood test.

Guess what – we have the MTHFR gene mutation. We have another name for it that also uses the letters M,T, H, F, and R, but I’m not allowed to say or my mother will  d-i-e.

lyme

I wish I had fully grasped the importance of sleep. This is one of the biggest factors that propels Lyme warriors forward. And insomnia is one of the first symptoms to crop up. Solving sleep issues made life so much easier for us and it would have been SO good to understand that poor sleep significantly impedes recovery. (A cleaner bedtime routine, magnesium, less electronics, and better hydration have improved our sleep.)

I wish I had better understood  the need for a clean diet, free of pesticides, full of pure, filtered water, and very little cheating. As in very little/no alcohol or sugar, as both feed Lyme and worsen symptoms. (We are really fun dinner guests.) But we can have stevia! Stevia fights Lyme, so that’s great. And coconut ice cream. And herbal tea. But eliminating sugar, dairy, gluten, and (most) alcohol has made a huge difference.

I wish I had known about the dangers of electronic overload, mold toxicity, candida, and the benefits of yoga, meditation, and living smaller. An intentional decision to live smaller will help the adjustment to new nutritional limitations and requirements and the bucket of supplements that need to be worked into the daily schedule.

I wish I had known about herbal protocols. The “herbal route” seemed way too “off the grid” for us. But I’ve since learned that many Lyme fighters do multiple courses (as in months and/or years) of pulse-dosed antibiotic therapy and then switch to herbal protocols. Even the most well respected doctors in the field are turning to herbals to come in and “finish” the treatment and clean up the mess left by prolonged antibiotic use. And some use them to begin with. Herbals offer microbial benefits without the side effects of antibiotics. We did not “go herbal” lightly – we interviewed doctors, read books, spoke to now healthy people, and were finally convinced that this was the right path for us.

I know there’s more, but I think this brain dump will have to do for now. The bottom line is that life got better when our treatment got “bigger.” We had to accept the fact that swallowing a handful of antibioticus.jpgs and a cursory effort at healthy eating and detox was just not going to get us well. It required a new way of life that I predict will have us wearing daisy chains in our hair and chanting in the grass, following the path forged by brave warriors who embraced new avenues for treatment. And it also meant that we had to admit how sick we’ve been. For too long we tried to live with normal expectations for our careers, our relationships, and our social lives, fitting treatment into the busy lives we were trying to lead, constantly falling short somewhere. And I think that finally admitting how sick we’ve been has allowed me to let myself off the hook, move forward, and dance at our son’s wedding.

Lyme links that have helped us:

http://www.tiredoflyme.com/

https://rawlsmd.com/

https://www.ilads.org/

https://www.ilads.org/providers-and-members/lyme-disease-fundamentals/

https://www.ilads.org/patient-care/ilads-treatment-guidelines/

https://www.ilads.org/patient-care/provider-search/

https://iladef.org/education/chronic-lyme-dos-and-donts/

 


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.

 

 

 

 

 

 

 


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.


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 3: How Ticks Transmit Disease

2lyme1Back to Your Very Special Lyme Lesson. This is the third installment in my series on Lyme disease. May is Lyme Awareness Month, which seems the perfect time to go in to detail about how Lyme is transmitted and diagnosed, and how something the size of a poppy seed almost ruined my life. If you missed episode one or two, you may want to back up so that you are up to speed on the soap opera that is my Lyme disease saga.

One of the Biggest Problems with Tick-Borne Disease is that ticks don’t just bite you and cause a single reaction, like a bee sting. (And I know if you are allergic to bees those reactions are very traumatic.) But once you’ve recovered from that bee sting, you are essentially “cured,” whereas the initial “nibble” from a tick is the beginning of a nightmare. Ticks don’t just cause a single, isolated reaction. If  you were bitten by a tick and developed the now-famous bulls-eye rash, you are actually very fortunate, because you will receive immediate treatment, long-term monitoring, and a much better prognosis – which can include total healing.

However.

 

tick-borne-rashes

I NEVER had a rash

Only 20 % of Lyme warriors present with the rash The rest of us – the other 80 % – have no idea that we were bitten by the equivalent of a poppy seed, and because we never had the rash, we assumed the early stages of Lyme were a bout of flu, a little arthritis, or some extra soreness from our hot yoga class. Researchers are learning more about Lyme all the time, including the fact that those who tested positive, and received immediate treatment, and even experienced relief from the rash, flu, or joint pain may actually still be dealing with Lyme disease unless they underwent serologic testing to identify any Lyme co-infections. It’s not like a strep test or a nasal swab for flu…your practitioners need to understand that the Lyme bacteria could have taken up residence in different areas of your body, and they need to proceed with testing to find out if you were left with undetected infections.

 

2lyme3If you were bitten in the past, and received a brief (2-4 week) course of antibiotiocs, but did not undergo follow up bloodwork, it is possible that those “undercover agents” remained undetected while triggering chronic disease. (I am really not trying to catastrophize this, and I know I sound like a real downer today. But I’m also not going to sugar coat the truth.)

Remember…Lyme isn’t just one disease: And once you are bitten – JUST ONCE, you. are. at. risk. for chronic disease. I suggested last week that we call it Lyme diseasESbecause ticks carry hundreds of pathogens, any of which can wreak havoc if left undetected.

 

Progdinner

It’s like a progressive dinner, without food, fellowship, or friends.

So how do ticks manage to contract so many diseases? They really are productive, reslient creatures. Ticks go through several life cycles: egg, six-legged larva, eight-legged nymph, and adult. After hatching from their eggs, ticks must feed from a live organism at every stage to survive and grow. And most ticks enjoy a varied diet, preferring to have a different “host “animal at each stage, kind of like a progressive dinner.  They feed on mammals, birds, reptiles, and amphibians, all of which carry different diseases. Which means that after every feeding, ticks have ingested multiple pathogens.

 

Oh, and stop reading if you are already freaking out. A Chinese lab recently published a study where researchers collected local ticks and allowed them to feast on laboratory rats that had been bred in captivity (they were free of disease prior to the study.) After the tick “feast” they examined both ticks and rats for the bacteria suspected to cause chronic lyme disease. The ticks entered the lab with 373 types of bacteria, and they transmitted 237 DIFFERENT diseases to the rats.

Lyme CycleIs anyone else wondering why ticks are able to survive with 373 diseases? Why don’t TICKS die of Lyme disease?? How do microscopic dots have 373 diseases and manage to go to work? I found an explanation for their adaptive resilience HERE

I’ve gone so far off the deep end that using freshly ground pepper throws me into a PTSD (post tick stress disorder) panic attack that can only be cured by buttercream frosting.

 

corkscrew

It’s a corkscrew, but without the wine.

Once you’ve been bitten….what happens next? The bacteria that ticks produce is a very long spiral-shaped (think corkscrew) bacteria called a spirochete that is able to move about by twisting and turning in a corkscrew motion. Ticks find the human bodies to be the perfect environment to multiply because they are asexual and anaerobic (meaning they don’t need match.com or even oxygen in order reproduce). So there they are, multiplying and spreading, setting up camp in different areas of the body, while remaining undercover. Much less detectable than Sean Spicer hiding behind White House bushes. Different spirochetes do different things, too, depending on which area of the body they “land,” and what type of bacteria they are.

 

 

cloak

My own Lyme biofilms disguised at least 7 layers of bacteria that were undetected in my doctor’s office for two years. PCR testing revealed the hidden pathogens

Remember that cloak of invisibility we talked about last week? Biofilms enable lyme bacteria to remain undetected for years…

 

After awhile the spirochetes evolve, and become to metabolically dormant cysts The cyst form allows the bacterium to survive your body’s inhospitable conditions and even elude your immune defense mechanisms. One of the co-infections I have, the mycoplasma pneumoaie, damaged my bladder wall by creating tears in the lining, which allowed bacteria to “slip through the cracks,” and remain undetectable while forming layers of biofilm. The biofilm allowed layer upon layer of bacteria to build up, while undetectable in most laboratory conditions until I found Ruth Kriz, PNP, and underwent testing at the molecular level.

Here is an more scientific description of what happens when a tick bites you.

For those of you who like bullet points, here is a basic description of how ticks transmit disease, per the CDC,  through the process of feeding. (If you are squeamish you might want to look away for a minute.)

  • Depending on the tick species and its stage of life, preparing to feed can take from 10 minutes to 2 hours. When the tick finds a feeding spot, it grasps the skin and cuts into the surface.
  • The tick then inserts its feeding tube. Many species also secrete a cement-like substance that keeps them firmly attached during the meal. (Did you get that? They cement themselves to you!) The feeding tube can have barbs which help keep the tick in place.
  • Ticks also can secrete small amounts of saliva with anesthetic properties so that the animal or person can’t feel that the tick has attached itself. If the tick is in a sheltered spot, it can go unnoticed. (Basically, they carry novocaine with them and numb you to avoid being caught.)
  • A tick will suck the blood slowly for several days. If the host animal has a bloodborne infection, the tick will ingest the pathogens along with the blood.
  • Small amounts of saliva from the tick may also enter the skin of the host animal during the feeding process. If the tick contains a pathogen, the organism may be transmitted to the host animal in this way.
  • After feeding, most ticks will drop off and prepare for the next life stage. At its next feeding, it can then transmit an acquired disease to the new host.

 So, as a Lyme patient warrior, I was bitten, cut, numbed, cemented, drained, and spit upon. And I never noticed. I’d better stop here. I think I’ve given you enough to digest. Maybe digest is the wrong word. 

 

2lyme5My years in parish ministry have taught me that everyone processes diagnoses in their own way. Some get through by pouring themselves into work, or other projects, letting their doctors be the experts, while focusing their mental energy elsewhere. Others need to gather information in order to persist, preferring to be annoying active advocates, and questioning everything. (I’m sure you are wondering what camp I fall into.)  And still others put their heads in the sand, refusing to think about or face their issues at all, binging on Netflix and Candy Crush. (And some are pretty judgy of those who cope in different ways, asserting or assuming that their own coping method is the best.)

 

And it is…for them. I would urge a little grace for those who process differently, unless you’ve tried on their shoes.

 

thinkzebra

CVID patients are often the perfect hostesses for Lyme

Because I am a zebra, and have been the “first of [his] patients to get this disease in 30 years of practice” and also “the first of [her]patients to get this [other] disease in 40 years,” I have had to choose the more “annoying” route, but I’m working really hard to put my faith in action and trust that not only will I thrive, but that we will be able to eek some goodness out of this unpredictable roller coaster, making “lymeade” even though I can’t drink margaritas.

 

 

 

 


Lymesplaining: Part Two

A second re-post as we enter what the CDC is predicting to be the worst tick season in history. Doctors are whispering to me that they are terrified for what is coming.

This is the second episode in my miniseries on Lyme disease, lending my story to the  efforts of Lyme Awareness month. Advocates, patients, family members and Lyme Literate Doctors are uniting across the country to plan walkathons, sponsor 5K’s, and put up billboards with GIANT SCARY TICKS. Some towns are hosting bar-a-thons and even (hair) cut-athons  to broaden awareness of what is now being labeled an epidemic. Because THE INCIDENCE OF LYME HAS SURGED BY 320% IN RECENT YEARS. This is my attempt to explain Lyme Disease for the average (medically untrained) person, or in the very least, break it down so that my own Lyme addled brain can process how a tiny nymph of a bug

nymph on finger

This is not my arm – but see that tiny dot? I hate that tiny dot.

caused a cascade of issues that finally resulted in my Lyme diagnosis. If you missed last week’s post and want the context of my “backstory,” or if you just really like to read about blood sucking villains, please start with the “first episode” in this miniseries

 

Prior to this year, the most I knew about Lyme was that it is caused by ticks, and is a very bad thing. If you have been thus far unaffected by Lyme disease

facepainting

This is me – unaware that I was developing three different diseases. So carefree with my fairy face-painting. Can I go back to that fairy tale?

then you would have no need to understand how stealthy, dangerous, and illusive ticks can be. A common misperception about Lyme has been that that is ONE disease caused only by the bite of a DEER tick.  As the proud mama to black and yellow labs, I was well versed in the need for monthly applications of frontline, and was even adept at removing the rogue ticks who got through the frontline firewall. But, again –  those were dog ticks, and before I was diagnosed with Lyme, we discounted them because our doctors (at the time) assured us that they carried no risk for Lyme, and even laughed at me for bringing  the tick to the office, carefully transported in a ziplock baggie like I was carrying radioactive material. (Um, it turns out I WAS.)  We also operated under the misperception that we only needed treatment if we developed the infamous BULLSEYE RASH that we knew to be an  indicator of a tick bite, and possible Lyme infection.

bulls eye

The Famous “Bullseye Rash” is not so famous. Only 20% of Lyme patients develop the rash and know to seek treatment.

But I certainly wasn’t alone in my ignorance. The lack of awareness extended to the medical community – constrained by CDC protocol which used the bulls-eye rash as the the criteria for treatment. And I use that word loosely, because the only approved regimen was a 2-4 week course of antibiotics, with little to no follow-up bloodwork to look for infections that alluded the treatment, hiding under their “invisibility cloaks” (otherwise known as biofilms.)

NymphpicFortunately, the body of knowledge about the prevention, testing, and treatmant of Lyme disease seems to be expanding almost daily, thanks to the advocacy efforts of the nationwide awareness campaigns.  Many mainstream physicians seem to be acknowledging that they, too, are learning more and more about lyme, which includes educating patients about the various ways  Lyme can be spread and acquired.  My local family practice is now educating patients to understand that while Lyme is most often transmitted by nymphs  (baby ticks), it can also be transmitted through contaminated blood transfusions, during pregnancy,  via intercourse (“Oh, GOD Mom, please don’t talk about sex”) and from exposure to feces from animals or people infected with Borrelia. They know that people can acquire Lyme from deer tick, dog ticks,  and sometimes from spiders, and mosquitos. This progress gives me hope for the future of all Lyme patients.

2lyme2But for right now…in good conscience I need to share that I had an off the record conversation with someone from the CDC who warned me that I would not get well if I stayed within the confines of the traditional medical establishment, because they have so to go to be on par with Lyme Literate doctors (LLMD’s)).

Oh – and here’s the best part: I have yet to find a LLMD who takes insurance,  which means that we pay out of pocket for ALL of my treatment. Most insurance companies allow a maximum of  about 15 minutes per patient. Lyme practitioners spend hours pouring over medical histories, and perform lengthy physical exams in order to even determine which tests to order before they can devise a carefully tailored course of treatment for each patient’s unique set of symptoms. Because ticks can transmit over 300 diseases, to say that each case is unique is a HUGE understatement.

believeSo – if we want to have doctors who specialize in Lyme (and of COURSE we do) we need to either 1) bite the financial bullet AND 2) join the advocacy effort to raise funds for research and to lobby the insurance industry to allow for individualized treatment, and bring the medical establishment up to speed. Follow this link to hop on the advocacy bus. Go on, I’ll wait while you do it.

I see glimmers of hope that this will eventually change. Our own family practice has done a 360 degree shift in the past twelve months regarding the protocol they follow to treat patients with suspected Lyme. They no longer use the bullseye rash as the justification to begin treatment, and they don’t care if it was a dog tick vs. a deer tick. Recently a friend went in WITH a rash, and was told that the only criteria they now use to treat for Lyme is knowing you were bitten by a tick. They are beginning to understand that early treatment prevents chronic disease. We can only hope that the Insurance Industry will follow suit, but I certainly don’t plan to die while waiting.

I will pick this up tomorrow, going a little deeper into the diagnostic process.

So much love,

Jenny

If you are here because you suspect that you or a family member may have lyme, here are some links that may be helpful:

International Lyme Disease Awareness Society: 

http://www.ilads.org

Support for Lymies in the DC Area

http://natcaplyme.org


Welcome, May….and Lyme Disease Awareness! (Lymesplaining Part 1)

Hi readers and friends,

I am reposting our Lyme stories with Lyme Awareness month halfway gone. We are still fighting lyme, with good days and bad days, with grit and determination. But the CDC is warning that this year could be a pandemic year for lyme, and it’s being labeled a health “crisis.” Because it is. So without further ado…Our Intro to lyme. (And new content coming this week)

ZebrastrongIt has become obvious that this little site is becoming a connecting point for others who are either battling Lyme themselves, or suspect that either they or a family member may have Lyme disease. And humor me while I add a necessary disclaimer – I am by no means an expert, mostly because of my zero medical degrees. This is simply my story, and because it’s a rare and twisty account, I have found that baring my soul to the masses bears the fruit of making connections with others who are going through similar things, and we are always better when we learn from one another. So if doing a search for “Lyme” or “Interstitial Cystitis” brought you here, welcome, and I’m sorry you had to google it in the first place. But it works well for me, because last month I rejoined my blogging community to help raise awareness for CVID, the immunodeficiency that kind of kicked off this domino effect of illness and autoimmune issues. (April was CVID awareness month, which flows perfectly into May – which happens to be Lyme disease awareness month.)lyme awareness

Because it has been awhile, a brief (HA!) refresher: My backstory is important, because we are learning that any one of the issues I have can cause a cascade of other issues. This all started because I have a rare immune deficiency that is called, oddly enough, Common Variable Immune Deficiency . Last January I was also diagnosed with Primary Biliary Cirrhosis/Cholangitis (PBC) an even more rare autoimmune liver disease, and then, as luck would have it, last May I found out that I also have Nodular Regenerative Hyperplasia, a second liver disease…..which, turns out, was caused by….

lyme-slices-for-successful-treatment-recipe-e1466303620638-660x330

And not the LIMES we put in margaritas.

frigging LYME.

The CVID was triggered by an e-coli infection that I contracted 6 years ago. It’s kind of a “chicken or the egg” type of thing because we don’t know if the CVID caused me to be at risk for the PBC, or if the E-coli caused my liver to declare war on itself. And it really makes no difference, except that other warriors who have any one of these conditions need to understand their risk factors for co-morbid (a really morbid way of saying co-existing”) conditions.

don'twannahearLiver Disease number 2” – the Nodular Regenerative – Hyperplasia(NRH) is caused by chronic infections, and the chronic need for medication. The infections and the medications lead to bile duct injury, which causes Portal Hypertension very bad things. People with CVID tend to have lots (and lots and lots) of infections. In my case, I was having constant UTI’s requiring constant antibiotic treatment and pain management support. And no one could figure out why I got a UTI every time I stopped taking antibiotics. (There she goes talking about tinkle again.) We were warned by my team at NIH that unless we found the root cause of these chronic infections, and STOPPED THEM, the NRH would progress. (BTW – “Liver Disease Number 1” (the PBC) is actually behaving right now, responding to the Ursodiol and milk thistle that I take every day, and my liver numbers are finally in the normal range. Go, PBC Awareteam!)

I began an exhaustive search for an expert on chronic UTI’s and Interstitial Cystitis, and as luck (or providence) would have it, I came across a practitioner in DC who originally opened her practice to treat women for Interstitial Cystitis, which is the term for bladder pain caused by unknown pathogens. And after years of practice, she began to realize that the common denominator, the root cause of Interstitial Cystitis, is Lyme Disease. 98 %of her patients have Lyme Disease. At first I had a very hard time believing that I could have Lyme Disease in addition to everything else. But think about it- I have virtually no immune system. I was the perfect hostess for this intruder.hobby

Before this, I knew that Lyme was a very, very bad thing, and that was the extent of my knowledge. So here begins my attempt to break down this complicated illness and explain it in a way that at least I can understand…because so many of us think, “Tick bite, rash, antibiotics, good to go.”

This is getting really long. Shall I break this into two parts? But before I get into my Lyme lesson…let me just add my 2 cents.

cloak

Lyme Biofilms are not as cool as Harry’s Invisibility Cloak….but they are more difficult to penetrate.

We need to lobby for a name change. It should really be called Lyme DiseasES. I don’t have Lyme Disease. I have Lyme DISEASES. Ticks aren’t hit men who bite you once and move on. They prefer slow torture, and specialize in working undercover for years – and I mean, literally UNDERCOVER because they form protective shields called biofilms – like Harry Potter’s invisibility cloak, allowing them to remain undercover and very dangerous, and move about wreaking havoc under their cloak of invisibility biofilms.

But I digress. Let’s stop for today…it’s important to know the backstory of my Lyme disease, because one diagnosis led to another, which is an important reminder to stay vigilant without becoming obsessive. (Good luck with that.)

Tune in tomorrow for an exciting chapter on “What ticks feed on during their larval stages to contract so many diseases.” It will either inform you, or help you reach your weight watcher point goals.

14051735_10210153069284834_8145779128675517410_nSo Much Love,

Jenny

More About Jenny Here

 

 


April, Zebras, Pregnant Giraffes, and I’m Back…

ivig

Those of us with rare diseases are called “Zebras”

More than a few weeks months ago many of my “zebra” friends rolled out their blog entries and traded website buttons to join the efforts of the National Organization for Rare Diseases as they commemorated “Rare Diseases Week” on Capitol Hill. I was one spellcheck away from hitting “publish” in order to to contribute my own two pennies to help raise awareness that there is actually an organization for people who, like me, confuse their doctors and make them say things like “you are making me punch above my pay grade.” NORD offers advocacy, research, guidance on healthcare, and if nothing else, a great tagline (“Alone we are rare. Together we are Strong”) which reminds me that 1) I’m not THAT special and 2) I’m not alone on this strange journey of unusual illnesses. But life and work and my own rare diseases conspired against me and I watched the February deadline through the rearview mirror of the ER suite I was occupying. I’m hoping that by publishing now, I will help to sustain the momentum generated by their efforts and do my own little part to keep the conversation going (See, this is really a better plan anyway.)

cvidAnd, talk about great planning, as luck would have it, April is designated as Primary Immunodeficiency Awareness month. I’m sure you already knew that. It also happens to be the designated month for Autism Awareness, Distracted Driving Awareness (and I’m typing this in the car), Jazz Appreciation Month, and National Poetry Month, to name a just few…..as well as some more obscure awareness campaigns like the “National Growing Naturals Day” and “Records and Information Management Month.” And thank goodness it’s also “Stress Awareness Month” because making time for all of this celebration and advocacy is stressing me out.

zebrasBack to advocacy and awareness. As I said up there (↑)  – April being Primary Immunodeficiency month works out to be the perfect time to re-engage with this community that I’ve come to love. If this is your first time visiting, you may want to start HERE to catch up a little. And you certainly haven’t missed much recently, as it’s been awhile since I’ve posted, and I appreciate the gentle queries as to how I’ve been. I’ve definitely experienced some stomach-churning writer’s guilt for making new friends and then disappearing on you. I’ve missed the interaction and the information exchanged in this community, so this is my attempt at re-establishing some regular posting. The answer (to your questions) is that things have been pretty typical for someone riding the autoimmune wave, with good days and bad days, and then whatever that level is below “bad,” because there have also been a few of those, too. And as long as I’m whining, I’ll admit that I’ve been a bit stuck as to how to proceed, especially given the ACTUAL NAME of this blog.

limbo4I began writing last year to share how we eventually reached the diagnoses of my own “rare diseases,” hoping to provide a landing place for others who found themselves googling things like “abnormal liver function tests” or “symptoms of lyme disease” or “chronic UTI’s” or “immune deficiency.” In my case, I had to doggedly pursue explanations for the physical symptoms I was having while yielding wonky lab results that confounded my doctors. I could have used advice paired with hopeful reality during that super fun limbo period when I had a tsunami of what appeared to be unrelated symptoms that no one could explain.We eventually discovered that those symptoms were. not. unrelated. but are rare enough that the likelihood of finding someone with the same potpourri of illnesses who also happens to blog about them is about as likely as my sons voluntarily replacing a toilet paper roll. I eventually got answers, but I would still be in limbo had I not stumbled into an online chat room that led me to the doctors who finally able pulled everything together and drafted a treatment plan to address my symptoms individually and my health as a “whole.”

I chose the name “Embracing Plan B” from a list of workable titles that were beta tested on various victims friends and family members. Titles like “living the life you didn’t unboundexpect” or “living well in spite of liver disease” or my personal favorite, “suck, it, liver disease.”  Don’t get me wrong, I do enjoy throwing up a middle finger at my condition – as I did when I rode the Rock – N-Roller Coaster on Monday despite the warning that those with “fragile health shouldn’t ride.” But it isn’t how I want to live day to day.

When I set out to write about this crazy ride, I felt that the act of embracing could set the tone for the way I want to live under this new normal. Embracing – which is very different from surrendering – implies a sense of welcome. “Okay. You’re here. Let’s do this.” When you embrace change, you stop railing against it, and open yourself to the possibilities wrought by the new circumstances– whether it’s new friends, a new community, or a new appreciation for boring days with no appointments. Elizabeth Edwards defined resilience perfectly when she said that “Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”

flowersEven an unwelcome diagnosis provides occasions to throw confetti during the storm. The “in spite of” title came very close to “winning” because implies a fantastic stance of defiance, but for me, it fails to convey the tone of “shalom” that I’m trying to establish as I re-invent my life with multiple diagnoses.

nothingforgrantedEmbracing my “Plan B” was made possible because of the tribe that surrounded me. They nurtured a posture of resilience by feeding my family, sending motivational socks and jewelry, finding uplifting and perfectly-timed books to equip me for the “battle du jour,” and most importantly, by offering a soft landing when I need(ed) to fall apart.

I now see the irony in the fact that choosing the title (and paying for the url) of “Embracing” has also provided a net of accountability… especially when I stumble through a season where “embracing” looks a lot more like hiding under the covers and eating cheez-its. I’ve been doing a lot less “embracing” while trying to extract myself from the headlock my illness seems to have me in, and my spirit of resilience has been ignored rather than nurtured – because it’s easier to retreat from the world and avoid both limbo and reality by waiting to see if a frigging giraffe would JUST GIVE BIRTH ALREADY (she doesn’t, by the way) (Wow – things have changed! See below) and wishing Pinterest would hire me.

 

Jenny's Giraffe

Click HERE for more of Christine’s art. All proceeds for the giraffe, called “Delightful Distraction” go to the American Liver Foundation.

But there it was again, staring me in the face, a WordPress invoice reminding me that it was time to “re-up” and pay the annual fee. As I contemplated just shutting the whole site down, some perfectly phrased emails with timely words of inspiration found their way to my inbox, reminding me that I can choose my response, even if I can’t choose my circumstances, And then….someone painted me a picture. A beautiful artist friend who radiates light and love and creativity, created for me my very own giraffe WHO IS NOT PREGNANT and will not cause me to waste my precious time. The holy triad of WordPress fees, inspired emails, and virginal giraffes have helped me turn my face to the sun and try to re-orient my posture to pursue joy. It’s time to Embrace again.

supergirlI recently completed 16 weeks of aggressive treatment for the lyme disease that hates my bladder and hurts my liver (and I will of course write about in the coming weeks with a clear warning before I continue oversharing about tinkle). And the treatment was mostly successful, though it also carried a risk of infection that (of course) sidelined me exactly 48 hours before a business trip and landed me back in my favorite ER. But I did it (like a boss) and you will hear about it, because it was a groundbreaking and revolutionary treatment for those of us in the Lyme community. And despitPhone Downe the temporary complications, it mostly worked and it helped us to cross one of those issues off of  the “triage” list.

And because there are no limits to do overs I’m going to try to throw off this mantle of gloom and see what “Plan B” has in store for me. Did I mention that April is also my birthday month? I’m closing out my forties this year, and just saw this quote by one of my favorite doctors. Brené Brown (Ph.D.) said that “Midlife is when the Universe grabs your shoulders and tells you “I’m not f-ing around, use the gifts you were given.”

So here we go again. Doctor’s orders.
So much love,
Jenny

P.S. Click here if you need that link to “Stress Awareness Month.” Who wants to be aware of stress? Isn’t that the whole point of emotional eating?

baby

Who thinks “Bunny” is a good name? Or, for a boy – “Peter”

P.P.S. Well. I guess I should have published this  two months ago when I first drafted it. As soon as this hit the inner webs, that giraffe went into labor. I’m sure I had something to do with it. Any overdue mamas out there? I have another blog ready to post.

More about Jenny here.

 

 


Finding the Sacred in Packing Up Christmas

Putting away our Christmas decorations makes me pathetically nostalgic. I am the rare one who enjoys this task. As I carefully wrap the Disney ornaments,and the Dixie cup bells, I mentally review our time together, and whisper a doxology of gratitude that another Christmas has passed with our family intact, and fully present. (And I never, ever,

dixie-cup-bell

This is a replica. You get the idea.

EVER take that for granted.) I gather up the stockings and the nativity sets and cast my prayers into the new year, begging protection and healing, and let’s be honest, success, for my people. I have even tucked notes into the rubbermaid bins…reminders to be grateful that I “get” to be present, unpacking a marriage worth of ornaments (because, you guys, my husband has an ornament problem.) This year the gratitude was a bit harder to muster, tangled with setbacks and let downs, diagnoses and water damage. And Donald Trump. But because gratitude precedes the miracle, I finally offered a litany of thanks for the people that we do life with, because I know how quickly that can change.

last-day

Last family picture in a well-loved home.

We moved to Northern Virginia from Charlottesville five years ago. We left with hearts forever grateful for the life we built, the friendships formed, the jobs we loved, and a close-knit swim community that dictated like….everything. Charlottesville was very, very good to us. And when we moved to Herndon, I was in the right mindset, ready to “begin again” assuming that we would pretty quickly build a new tribe. I knew it would be difficult, but I was mentally prepared to resettle us and do the awkward work of forging new relationships. Yet I failed to include in our  plans the e-coli infection that would land me in the hospital two weeks after the moving truck pulled away, changing not only the course of my life, but also limiting  our ability to assimilate into our new community.

bake

We may not be crafty, but we sure can bake…

My Charlottesville tribe knew me as an active mom, an overzealous passionate swimming advocate, a devoted employee. A crazy neighbor. I often feel like my identity here offers a stark contrast, because all I’ve known since August 2011 is a near constant battle to regain my health. I originally thought there would be some type of “bell-ringing” after I recovered from the e-coli infection, some attainable end point. But the reality is that I have been a “patient” for five years, and as we’ve untangled the enigma that is my weirdo body, I’ve had to accept words like “rare” and “chronic” and “lifelong”….and“incurable.” The contrast looks like the flip side of a before/after list. From full-time to part-time. From team leader to occasional volunteer. From homemade dinner every night to more take-out than I will admit. (The guys at our “go to” take out place check on us when we don’t call.) I’m still at times stunned by the differences in our lives, and how strange it has been to have been on the side of “need” from the beginning of our time here. It’s bewildering to begin relationships on the receiving end of grace, when I was so previously accustomed to first offering it. And people who knew very little about us stepped into our story…and stayed.

poop

Before you ask, no, you may not have them. Our dogs are terrified of them and it’s hilarious.

I am convinced that I have the best tribe in the whole world. My people enter our “crisis du jour” and love us with food, flowers, books, knitted hats, and even playdoh. Oh, and poop emoji slippers. (It turns out that it’s still dangerous to put playdoh in the hands of 18 year olds all men.) This “chronic patient” thing is something I’m still adjusting to – reframing expectations, and moving the goal post a littler lower some days.

So when the holidays come and I run into friends from my “old” life, I have to really think before I answer the “How’ve ya been?” question. I sometimes avoid calls (sorry) and duck behind an aisle if I happen to be in Charlottesville. Do they really want to hear that soon after we moved I ended up with two liver diseases, a rare Immune Deficiency, and Lyme Disease? Can I just type out a one-sheeter and hand it to them? “Read this, and if you have questions, great. If you don’t wanna hear anymore, I get that, too. We can just cover the basics – it’s certainly easier for me.” It’s not that our former tribe would fail to understand and even offer  to help; in fact, I know the opposite to be true. I think it’s just too much to admit how many hard days we’ve had since moving, and way too long to go into. (I definitely need a one-sheeter.)

clark

We haven’t even started on the outside. Jim went a little “Griswold” on us this year.

As one woven deep into the fabric of several faith communities, I have lots of wise sayings sent my way. I am lifted with relevant Bible verses and whispered prayers; emboldened by texts reminding me to be brave and to seek joy; cracked up by my poop slippers. But as I continue the work of putting Christmas to bed, and reflect on the year that stretches in front of us, I can’t help but try to learn the lessons that are in front of me. I know I will be forever changed from having to make connections from a place of vulnerability, having received nothing but acceptance. I arrived here a steaming hot mess, and was welcomed in spite of my inability to serve on a PTA, or get to back to school nights, to run a swim team or manage a gift-wrap campaign.  I resolve to listen more, and to be kinder than necessary, for it really is true that everyone we meet is fighting some kind of battle.

Happy New Year, dear tribe. Let your hearts be light.

More About Jenny Here