Lyme, Depression, and Dancing

Here I am again, the queen of fits and starts. We’re actually doing pretty well, but we still suffer from the constant effects of fighting lyme, catching up, diving into work, and starting the cycle again. Except…the sick cycles for our family of lyme fighters seem to be ebbing more than flowing. And for that I am profoundly grateful.

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This one has been churning for a while, and though we’re a month removed from the actual Mental Health Awareness Month, it’s important no matter what month it is to be able to talk about not being okay. And most Lyme warriors will tell you they spend a LOT of time not being okay.  First of all, if you missed Jim’s update, start there because it provides the context for this post.

In our own family, with three of the six of us having Lyme disease, it’s probably safe to say that we’ve all spent quite a lot of time not being okay. Even those among us without Lyme have struggled mightily because the ripple effects of fighting Lyme continue like waves for years. Everyone in our “core” family has suffered from some type of lyme-related trauma or even PTSD. Whether it’s caregiving fatigue, or feeling the financial effects of lyme-related treatment, we’ve all suffered from some type of shell-shock.

It is estimated that 20% of lyme fighters battle depression, with both biological and situational roots. The other reality of Lyme disease is that suicide rates are drastically under-reported, and with suicidal ideation a terrifying fact of life for many people with depression, the possible, and even probable, statistics are staggering. Consider the following:

  • The CDC is only able to officially report 30,000 cases of Lyme each year because they have to rely on other agencies reporting local cases. Two recent studies published by the CDC estimate that the number is drastically higher, hovering around 350,000 NEW cases of Lyme each year.
  • The NIH reports an even more appalling number, estimating that there will be at least 1 MILLION new cases of Lyme disease  in the United Stages in 2018, and over 2 million new cases in Europe. One NIH estimate is absolutely chilling, citing that   “In the USA by 2050, 55.7 million people (12% of the population) will have been infected with Lyme disease.”
  • The most recent research suggests that AT LEAST 20 % of lyme fighters have depression, but even the authors of the study acknowledge the probable inaccuracy of those numbers.

What this means, if you take time to digest it,  is that at least 20% of the 350,000 individuals with Lyme disease are depressed, resulting in 60,000 cases of Lyme-related depression each year. If you consider NIH’s prediction of 1 million new diagnoses, that translates to 200,000 people suffering from Lyme-related depression this year alone. And all of this is absolutely ATROCIOUS, because if Lyme is under-reported and depression is under-reported, we are left with staggering numbers of people suffering because of an enemy the size of a grain of sand, and a disease that is completely under funded.

lamottLyme is insidious, and most of the people wading through it are unable to take the time to write a blog about how depressed they are because they are most likely trying to survive, financially and physically. We need better testing, more funding, better advocacy, and more lyme fighters willing to talk about how they navigated the mental health aspects of Lyme. We also need lyme fighters willing to brave the stigma that comes from talking about depression. 

Lyme disease is the fastest growing vector-borne disease in the country, yet funding lags WAY behind the funding for the Zika virus. Below is a table detailing the funding allocated by the NIH for different vector-borne diseases:

Lyme-Funding-Chart_new_1_2016

I will address how we as a family found our way through the maze that is lyme-related depression, but as we’ve said again and again, it’s not linear, and having depression caused by an infection needs to be addressed in a different, even more comprehensive (and, yes, expensive) way. But if you take anything away from this, it’s our reassurance that there IS a way through it. And it feels really good to finally be okay.

My advice to lyme fighters struggling with depression would be to, first of all, find someone to talk to. Depression dulls our cognitive abilities and makes prioritizing and decision-making even harder, so a qualified therapist can help you triage and navigate treatment and recovery. I would then suggest you devote some time researching how to treat lyme-related depression by treating the infection AND the depression. (But do so carefully, and under the supervision of a qualified practitioner. Read about our experience with helpful genetic testing in this post.) And finally, tell someone you aren’t okay. This road is too hard to go alone.

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When in doubt, try giving in to the groove.

God bless you all good.

Lyme and Depression Links

 

 


Breaking Through

This is an update from Jim:

Part of the mystery, frustration, and sadness of Lyme is the misunderstanding, misdiagnoses, and misinterpretation that define the disease.

Over the past 11 months, I have sat down to write blog posts on several occasions, each time with the intention of declaring myself either cured or so much better, this to give those of you in the throes of the disease some level of hope. Each time, symptoms of some variety would reappear and take a massive dump on my spirit. So, it seemed disingenuous to publish a blog of hope and optimism when that was not what I was feeling.

That has changed, and all for the better.

I now can write with supreme confidence that I have conquered this horrible, isolating, insidious disease, even if “conquer” might have a slightly different connotation that it would have for me a year ago. And let me begin with that last point, which is that I don’t think I truly began to knock out the residual effects of Lyme until I made this acknowledgment to myself one evening while sitting in an Epsom salt bath with a Bentonite clay mixture on my neck: “I am really, really sick.”

May 2018 was the 18-month mark of my formal diagnosis of Lyme, which coincided with the length of time I had followed an antibiotic regimen that had included Minocycline and Tinizadole and, later, Bactrim and Flagyl to go along with a shitload of supplements.

My progress was not linear, which I think made it that much more frustrating. When I initially had begun with minocycline and Tinizidole in November 2016, I experienced an immediate and dramatic reduction in my symptoms. My brain felt clear and many of the other neurological symptoms that had defined my Lyme declined noticeably.

When the symptoms reappeared periodically, this time accompanied with a new symptom, depression, it was still horrible, disheartening, and debilitating, even if I had been warned that depression was possible, maybe even likely for someone with neurologically involved Lyme.

But I still was seeing progress as winter turned to the spring of 2018. Most dramatically, the creaking and popping in my neck that over three-plus years I had learned to associate with intermittent word recall issues and brain fog was steadily going away. The back of my neck was not as tight as it had been for years. It didn’t feel like I had sand in my neck when I turned it. The pops seemed more productive, sort of like when a bad cough begins to loosen up and you know you’re getting better even if the cough sounds worse. I saw this as a positive development, particularly because the nurse practitioner who first diagnosed my Lyme and began my treatment had told me that when the creaking and popping went away, that was a sure sign that I was defeating the disease.

However, for lots of reasons, I had switched my treatment to a Lyme-literate doctor in May of 2017. I continued to see general progress under that doctor’s care. But some truths also had to be acknowledged by the time the calendar flipped to May 2018. I was emotionally frayed. For too long, small frustrations turned quickly into anger. And I still too often felt ill-equipped to deal with the challenges of heavy conversation. My trigger was short. Way too often, I was angry, sad, and frustrated. I was no fun to be around. I hadn’t associated my emotional state with Lyme Disease, but, in retrospect, it no doubt was. I had very little control over it and guilt wasn’t something I needed on top of everything else, but there it was anyway.

And as much as I tried to wish it away, I still periodically would feel the effects of hypoglycemia (low blood sugar). The onset of hypoglycemia had been my first clue back in 2014 that something was terribly wrong with me. And as my hypoglycemia had steadily dissipated, I clung to that improvement as a sign that I was steadily getting better.

But in May, when I visited my Lyme doctor for the first time in six months, I left horribly frustrated.

The doctor was concerned about my mood swings and what she felt were symptoms of depression. The doctor told me that antibiotics had likely taken me as far as they could, and that my body now needed time to heal from the effects of those antibiotics. That part was fine and made perfect sense to me.

The frustrating part was the doctor’s outright dismissal of the improvement of my neck as a sign of progress against Lyme. To my shock and dismay, the doctor suggested that she didn’t see my neck creaking and popping as related to Lyme at all. I was stunned. Probably worse, she also suggested that my hypoglycemia wasn’t related to Lyme either.

I was confused and frustrated. If I couldn’t point to the improvement in those two areas as progress, how could I feel like I had made any progress at all?

But the confusion and frustration would soon turn back to hope, even if it would be a turn that would take me wholly out of my comfort zone.

Jenny and I – much more Jenny than I – again began to pore over available Lyme literature and to look at our options. We have been accused of being “Google doctors,” but, hey, I’ve been called worse and, while we have to be careful not to substitute our research for genuine medical advice, we would not have found the path that has led to recovery without having done a mountain of research ourselves. I took the doctor’s recommended approach of cycling off the antibiotics and we began to more aggressively explore the stories of people who had conquered the effects of chronic, neurological Lyme.

The fact that my doctor had dismissed my neck creaking and popping as unrelated to Lyme was just plain wrong. It is a common, common Lyme symptom and when it begins to go improve, it is indeed a very good sign.

The fact that my doctor had dismissed my hypoglycemia as unrelated to Lyme was equally wrong. It’s less common, but when you cast the net wide enough, you will find others who have experienced that as a Lyme symptom. What we’ve subsequently learned is that Lyme can over-stimulate the adrenal glands. The resulting higher levels of adrenaline cause the pancreas to over-produce insulin, which leads to low blood sugar.

That is why, in the past, I would experience low blood sugar most noticeably when I was in a stressful type conversation or making a speech in front of a large crowd, which I often had to do. It’s also why I experienced relief from my hypoglycemia when I exercised because my body found a use for the excess adrenaline when I exercised, preventing that adrenaline from over-stimulating my pancreas.

I go through those points in some detail because I now have answers, answers that I would never have found had we merely followed the counsel of doctors. Even the most Lyme-literate doctors were not going to have all the answers for me. I had a complicated array of symptoms from chronic Lyme. The disease strikes everyone a bit differently and, because of that, I was going to have to get my treatment, counsel, and inspiration from multiple sources. I also was going to have to listen to my body. And I was going to have to be open to new approaches.

In May, we had a long drive to Florida during which Jenny had two books and a laptop open the whole way and it seemed that every mile we found another story, another anecdote from doctors and fellow Lyme sufferers who not only experienced the same symptoms that I had, but who had genuine and specific success conquering their symptoms.

I went quickly from frustration and confusion to profound hope, but I likewise was going to have to embrace new realities, some of which were very different from how I was living prior to that point.

  • I had to adhere to a highly restrictive, “fun-free” diet. Grrrr!
  • I had to give up beer and wine. Grrrrrr!
  • I had to begin meditating. GRRRRRRRRRR!

And then, perhaps by divine inspiration – or maybe Disney Magic since we were in Orlando – a relative put us in contact with a friend who had conquered Lyme that seemed to be similar in scope to mine.

Her name is Phyllis (not really Phyllis, but let’s go with it). We talked with Phyllis on a rainy day in Orlando (by the way, it has rained the whole friggin’ year, no matter where we have gone). But Phyllis’s news shone bright through Orlando’s thick clouds that day.

Phyllis’s life had been utterly ruined by the effects of Lyme Disease. For two solid years, she had been unable to leave her house. Her career had been ruined and her family had been torn to shreds. Her symptoms had mirrored all of mine, albeit significantly worse than mine I’d say.

“So, Phyllis, did you have…” 

  • Hypoglycemia? “Yes.”
  • Word recall? “Yes.”
  • Creaking and popping neck? “Oh yeah.”
  • Brain fog? “Yup.”
  • Joint pain. “Yes.”
  • Depression and frustration and quickness to anger? “You betcha.”

The more we talked, the more I realized I had found someone who had experienced Lyme in the same exact way I had.

The incredibly good news? She had found a practitioner right in her neighborhood who had completely eradicated the disease for her. She was now completely and clinically Lyme free. She had been to the top doctors in New York City who had not been able to bring her relief. But this practitioner had done things the top doctors could not.

But, Phyllis warned us, this is “really, really different.”

We acknowledged that as we made an appointment to visit the same practitioner a few weeks later up in Connecticut, but I didn’t wait to get started on what we’d learned.

I moved to a gluten-free diet. Everything likewise had to be organic with very limited dairy and sugar. I was supposed to remove alcohol entirely – and I did cut way back – but it was unrealistic with our son’s wedding approaching that I would be able to go cold turkey.

Sleep and rest were going to be vital to my recovery, this while I had to double down on supplements to ensure that my body had everything it needed to fight the Lyme.

And, yes, meditation would be key to my recovery as well. Somewhere we read that my brain had been “on fire” for three-and-a-half years, and that seemed to be an apt descriptor for me.

OK, so I feel that it’s important to acknowledge that progress began before I went to see the practitioner in Connecticut, even if much of what he would recommend matched what I had just started – the diet, the sleep and rest, the meditation, and a general connection of mind, body, and spirit.

All right, that last sentence? I slipped it in there, but let me acknowledge that I wasn’t – and still am not – the kind of guy who’s ready for a Dali Llama tattoo on my shoulder blade.

So, I began with the new diet and the meditation and reduction (if not wholesale elimination) of alcohol.

The positive effects were immediate. As weird as it sounds, after I meditated, my brain would not only feel clearer, it felt like something was melting in the back of my skull and down my neck. It felt like a cold liquid was dripping down the inside back of my skull and then down my neck. And it felt good. It felt like progress. My head felt clearer after the “melting.”

Now, I know that sounds nuts and I’ve had no one – not another Lyme sufferer nor a doctor nor even Phyllis – make sense of the melting, so this is my experience alone. The closest I’ve come to legitimize that experience is to have a doctor tell me that researchers at the University of Virginia have identified a lymphatic system within the brain that can drain with deep sleep and the reduction of inflammation. And I put legitimize in quotations there because this is a case of where I had to listen to my body. So, I’m going to go with that as my explanation and that’s something I’ve learned to do. No one is going to have all the answers. I must be my own advocate. I must listen to doctors and other experts, but I likewise must have my ears and mind open to what will work for me.

And I can sit here on a couch right now and tell you that I am 99 percent better and if I never knock out the final 1 percent, maybe that’s fine. I am happy. I am feeling great. And I know that I’ve beaten this horrible disease.

Now, let me get to the experience with the practitioner in Connecticut. Let’s call him “Bill.” We arrived to Bill’s office for my first visit in early June. The shelves and floor of his waiting room were covered with Buddha statues and funky lamps. Symbols and images of Eastern philosophy covered the walls. Soft, meditative music wafted through the air. We were asked to remove our shoes at the door. I want to say there was incense burning, but I don’t think that was the case.

Bill greeted us with a hug, took a sample of my blood and urine, and sat me in a chair. He put headgear on me that roughly resembled the contraption that Harold Ramis put on Rick Moranis in Ghostbusters, this while he gave me copper-plated handsets to hold and a copper footstool on which to place my bare feet. This was a bio-resonance treatment that I was reluctant to believe was real, but all I had to do was to close my eyes and summon the idea that Bill had cured Phyllis and that Phyllis was normal … and then it became easy to just run with it all.

We talked and Bill told me that I was about to get much better. He generated an herbal mixture customized for me based on the state of blood and urine. He would give me three herbal supplements that I would take over a four-month schedule. Bill would outline an even more restrictive diet than what I already was following. The idea was to follow a completely alkaline diet, reducing acidity as well as inflammation. And, for me at least, the items that were high in acidity were anything but intuitive: Red meat, alcohol (of course), coffee, uncooked onions, berries, mayonnaise, all sugars.

Then there was the list of acceptable foods: sweet potatoes, runny-yolk eggs, apples, cooked onions, herbal teas. The acceptable list was much smaller of course. I could have corn on the cob, but only if I ate it within 24 hours of picking. We had more than one laugh at the idea of venturing into a corn field to go pick corn ourselves and then running to a kitchen to cook it. OK, that doesn’t sound funny after writing it, but it was.

This wasn’t going to be easy, but I could do anything for four months, right?

Now, one thing Bill told me was that if I ate foods on the forbidden, acidic list, I could counter that by eating more foods from the acceptable, alkaline list. So, when I occasionally imbibed with a rogue strawberry or glass of red wine, I would overdo it with extra sweet potatoes, salad, and tea and everything would be OK.

Bill laid out the importance of supplemental vitamins like B12 and D and many others. He emphasized the need to drink lots and lots of water, which I did, but, even so, the color of my urine has been quite entertaining for the past five months.

I asked Bill about exercising, telling him that I had been a compulsive runner for the past two years in large part to detox from my Lyme treatment. Bill told me that I needed to stop running altogether, that he didn’t like the physical pounding of the running on my system. Of all the restrictions, this was the one that bothered me the most.

One last thing, Bill emphasized to me just how sick I was. His analysis of my blood showed that the Lyme had indeed had a big impact on my brain, which I knew, as well as on my heart, which I had not known, but which subsequently was verified by a blood test at a doctor’s office. He said that I was lucky to be alive, but that part of getting better was going to be acknowledging how sick I was and giving my body and my brain the time it needed to rest and heal. The experience was all kinds of weird, but it likewise made all the sense in the world to me.

On the drive home, I could distinctly taste metal in my mouth, something we called Bill about and he said was the result of a purge of heavy metals from my system. And then the melting and cold liquid sensation in the back of my head and down my neck became more profound.

When I arrived home, I put Bill’s regimen and diet into full force. My everyday breakfast would be eggs with salad (as in “that’s lettuce on my breakfast plate”). And my lunches and dinners in every way adhered to Bill’s instructions. I made time every day to meditate and I soaked every evening in an Epsom salt bath.

But it took only a few days for my legs to feel heavy and for me to feel uncomfortable with the idea of not running and not sweating. My body was screaming for exercise and I felt compelled to ignore Bill’s strict advice on that one. I needed to run, so I did so, but my compromise was to do so at a lower intensity and for a shorter duration.

And that is an example of what I emphasized earlier. I needed to listen to Bill and to doctors and to Phyllis … but I also had to follow what my body was telling me. Another local Lyme doctor I began seeing to supplement the treatment I was following through Bill told me that my body would “talk to me.” She referred to this as it relates to my neck, that I would know that I need to pay more attention to getting rest or eating better or detoxing if and when the creaking and popping in my neck became more noticeable.

Going back to Bill’s treatment, what I began to notice most quickly was that my sleep improved dramatically. In addition to more restful sleep, I began to have more memorable and vivid dreams. My sleep felt like it was helping me to get better.

We made the long trip back up to see Bill three times and across each four-week period I was incrementally better. Keep in mind that I already had felt quite a bit better with the changes I’d made prior to visiting Bill.

At one point, Bill told me about a doctor with whom he’s worked over the years. The doctor himself had Lyme Disease and said that he’d rather have had HIV than Lyme. His reason is that there’s a set treatment for HIV and that you can live a normal life with HIV. “You can’t live a normal life with chronic Lyme,” he said. That struck me hard: I hadn’t been able to live a normal life with Lyme Disease.

I am now five months removed from my first visit to Bill and the treatment he prescribed is now a month in my rear-view mirror. About two weeks ago, though, I had a realization. Not only was my brain completely clear, I could not remember a recent instance of a word-recall issue. While my neck will grind and pop a bit now and again, it is nothing that bothers me at all and it never seems to coincide with any other neurological symptoms as it had in the past.

I’m calmer. I’m happier. I’m hopeful. I’m a different person.

Am I completely done with Lyme? I don’t know the answer. But what I can say definitively at this point is that I am way better than I was four months ago, which then again was way better than I was six months and a year before that. And, as I said to Jenny several weeks ago, if I only ever get this much better, I am more than OK with that.


Holding Space & Making Casseroles

FBWJWith half of my professional life spent in parish ministry, I cross paths with people at their best and worst moments. The healthiest communities are those where people can safely share their burdens, and know that their load will be yoked to people who truly want to help. One of the trickier paths to navigate is when EVERYONE wants to help, and while being knee-deep in casseroles is pretty awesome, it can create some awkwardness if the one asking for help is not familiar with the throngs of people offering care.

This is an amazing problem to solve, and is an opportunity to remind one another that 55 casseroles just might be too many…but that there are many other ways to lean in for someone in need. I’ve found it best to sit down with whoever is in this new and  vulnerable position for an honest, confidential, and hopefully empowering conversation. It is crucial to reiterate that the person asking for care does not have to accept help from people they are uncomfortable with, they don’t have to eat food they don’t like, and they don’t have to apologize for anything. I recently walked a team through the process of setting up care for a recently diagnosed colleague and we used a model I have been privileged to use before, creating layers of care to meet the various needs while carefully guarding the privacy of the person in this bewildering season.

Wise friends taught me to ask the care receiver to come up with five people she would be comfortable having around her…the people she could text “help” to and know that they would drop everything.  These are the ones able carry the raw pain that comes with a terrifying diagnosis, creating the first circle of care outside of immediate family. After that, a second “ring” of care can be used up for dog walking, house cleaning, or meal preparation. This ring is filled with people who are typically selfless, generous caregivers who understand that they are meeting a crucial need, but are probably not in daily contact with the care receiver.

Unfortunately, diagnoses don’t typically arise when everything is neat and tidy. They tend to crop up during holidays, vacations, job crises, or family feuds. Fear and pain usually magnify what is already happening within the context of relationships, so perhaps setting aside all expectations is a first step for family and friends.  I often remind caregivers that the care receiver 1) doesn’t have to apologize for how the diagnosis makes others feel and 2) isn’t responsible for the emotional well-being of anyone other than themselves (and their immediate family.)  The need to provide care so quickly can also force some difficult and necessary reminders that “it’s not about you,” or rather…”it’s ONLY about the care receiver.”  And it’s perfectly okay if you cannot hold space this way for someone, no matter the reason, because another need will arise and you will be able to step up at that time. But it’s NOT okay to pour your own concerns, sadness, or even disagreements INTO the circle of care.

ringtheory1.jpgFive years ago, psychologist and breast cancer survivor, Susan Silk (along with her husband, Barry Goldman)  developed a simple technique that offered a simple, visual explanation to help everyone in and out of the “circle of care” understand and maintain healthy boundaries throughout the caregiving relationship.  It can be applied across all tragedies – medical, legal, financial, romantic, and even existential. She named it it “The Ring Theory,” and when the article ran it provided relief for thousands of people.

She tells people to draw a circle that will serve as the center ring and put the “care receiver’s” name inside. Next, draw a larger circle around the first one and write in the name of the person(s) closest to the trauma, and continue circling and naming as many times as you need to, which each larger ring representing the  next closest people. (Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones.) What you end up with is what Susan calls the “Kvetching Order” where you apply the “rules” to the Ring Theory.

Rules, you ask? Yup. But remember…these are Susan’s rules, I didn’t make them up:

  1. The person in the center ring can say anything she wants to anyone, anywhere. She can cry and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring.
  2. Everyone else can say those things too, but only to people in the outer, larger rings.

Basically, if you are talking to someone in a ring smaller than yours, someone closer to the center of the crisis, the only goal should be to help, and listening is more helpful than talking. But if you’re going to speak, try to remember to ask yourself if what you are about to say is likely to provide comfort or support…and If it isn’t, then just. don’t. say it.

People who are suffering from trauma don’t need advice. They need comfort and support  such as “I’m sorry” or “This must really be horrible” or “Can I bring you a CASSEROLE!!!” and not “You should hear what happened to me” or “Here’s what I would do if I were you.” And PLEASE don’t say, “This is really devastating ME.”

If you need to vent or cry, do it in the opposite direction. Turn away from the inner rings and pour it into any of the outer rings. This has famously become known as “Comfort IN, dump OUT.”

I hope you will never find yourself in the center ring, but I know few people who don’t spend at least some time in the eye of the storm. Comfort in, dump out.

God bless you all good.

 


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

 


Landing the Plane…

Yesterday I broke my own rules by talking politics on this blog that is supposed to be about our journey to health.  I was  lamenting the loss of political discourse with manners. (But really, the lack of civility is MAKING ME SICK so I think it’s relevant). I have been repeatedly bewildered by the fact that NO ONE seems comfortable enough to cross the political aisle to build a bridge to compromise. Why do we have to admit that every part of every idea from anyone on the “other side” is a bad idea? I would knit myself a purple cap if just one of our leaders would be brave enough to admit that “the other side” has SOME valid points.

KristaWe are missing the opportunity to show our children how live out our values AND play nicely with the other team. And if you are part of a faith community where faith informs your vote one way or another, aren’t we undermining the human value of those on the other side of our ballot when we paint an entire group as evil? I teach my Sunday School children lesson after lesson about Jesus seeking and drawing in the outsider. Whether they were marginalized by illness, religion, occupation, or social status, every encounter with Christ restored their health, well being, and status in the community. He helped them to discover personal value that transcended societal mores. And then I leave these lessons behind with the glue and the glitter, and fall back into my fragmented community. I can’t help but think that God must be grieved by this fragmentation. I have had several verses jump off of the pages of my bible enough lately that I’m beginning to see a theme. I keep reading, over and over, how God is grieved when “trouble is stirred up in the community.” Our leaders are terrified that giving “the other guy” any credit is their political death sentence…because it IS. (Do we have to throw out entire policies because we hate the authors?)

I’m going to do a really fun thing now and share some parts of the best sermon I ever heard. (You must be trembling with excitement.) I was with my mom in my congregation in 2011, and this sermon was so good, she and I used up all of the offertory envelopes in the pew row because we were taking notes. She leaned over to me and said “This is the best thing I’ve ever heard” which is why I can share it here…it’s Janice approved. This message left an indelible mark on my heart, changed my worldview, and challenged my theology to such a degree that I’ve asked John for permission to share it several times. And because he is awesome, I’m republishing parts of it below.

Our church was in a series on “The Fruit of the Spirit.” In this particular sermon, John (Herman) was mourning what I was moaning about above…the fact that in our “argument culture” every side is painted as the enemy, and he was encouraging our unique congregation – which was called “PEACE” Lutheran Church – to live into our name and live our faith in a different way. He was referring to a book I’ve quoted before called “The Argument Culture” by Deborah Tannen based on a claim that our society has become a “culture of critique.”

“The argument culture urges us to approach the world—and the people in it—in an adversarial frame of mind. It rests on the assumption that opposition is the best way to get anything done: The best way to discuss an idea is to set up a debate; the best way to cover news is to find spokespeople who express the most extreme, polarized views and present them as ‘both sides’; the best way to settle disputes is litigation that pits one party against the other; the best way to begin an essay is to attack someone; and the best way to show you’re really thinking is to criticize.” (Tanner, 3-4)

John unpacked this by pointing out that “There was probably a day when presidential debates were about issues and substantive dialogue; I just don’t remember back that far.” He challenged us to lay aside our differences and instead work towards one another…because one doesn’t have to negate the other. John said that “Into the midst of this divisive culture, the gospel of Jesus brings an alternate perspective. ‘Blessed are the peacemakers, for they will be called children of God,’ or from the apostle Paul, ‘If it is possible, so far as it depends on you, live peaceably with all.’”

breneHe reminded us that The root meaning of “peace” comes from the Hebrew concept of shalom. Shalom refers to a state of well-being, wholeness and harmony; a connectedness that infuses all of one’s relationships, with God, each other and the world. Both shalom and peace describe a way of living, A way of repairing the world.”

But what really convicted me was the way he landed this plane: He offered 3 concrete steps to further of God’s work of peace: (And for the record, I am still quoting verbatim.)

  • “First, practice ambivalence. You could define maturity (emotional, psychological, spiritual) as the ability to hold two truths in tension. The world is not black or white. It is characterized more by ambiguity and complexity. What does ambivalence look like? In political terms, we are not the good guys and they are not the bad guys. We can support our troops and question the wars. We can respect the president and hold him accountable. We can believe in our form of democracy but also open ourselves to the reality as to how our might and power are perceived by the rest of the world. (Robinson, “God Bless America: Be Careful What You Pray For,” 7/4/11) The argument culture tries to seduce us into thinking it’s a black and white world, with two opposing sides to every issue. It’s not. Practice ambivalence. And so further the peace of God.”
  • “Secondly, practice crossing the boundary. (As the Samaritan did, in Jesus’ parable, ministering to the Jew in the ditch.) Welcome strangers. Embrace those who are different. Refuse to demonize other human beings. Jesus teaches us to love even our enemies. What did he mean? To treat them with the respect and dignity every human being deserves. (Robinson) Practice seeking the common good. What is good about the ideas of the other person? What is good about the other person? How can I be a peacemaker in my own little circle? How can I be a peacemaker in our wider community?”
  • “A third way to further God’s work of peace: Practice serving others. There’s a lot of need to go around. Pick up a newspaper any day and you’ll be made more aware of it than you’d like to be. Children who are hungry right here in America. Large populations who do not have access to clean drinking water. Young people whose only experience of family is being a part of a gang. People of color who bear the everyday disgraces of racism. The mentally ill who are left to fend for themselves without medication or treatment. (Robinson) Children, youth and adults who cannot read. Pick a need. Any need. We can’t do them all. We can hardly make a dent in one life, let alone many. But pick one. And allow the light and love of God shine through you.”

“Practice ambivalence. Practice crossing the boundary. Practice serving others. What might the world be like if we practiced that kind of living and loving even in small ways? A better world…A more peaceful world, I think.”

artAs much as I want to instill in my children men a legacy of tolerance and reaching out to the marginalized, I know that I don’t want THESE PAST FEW MONTHS to be the lesson they learn from me. I’m not perfect. I will fail by 10 am most days. I will to continue to call my congressman, and advocate for the areas I’m passionate about and the people I want to protect. But I am also going to fight for us – collectively – to do this better.

God Bless You All Good.


Politics & Resilience…

Oh boy. Here I go. This one has been circling my brain for awhile. A couple of months ago I returned to my online community to reestablish the connections we had forged over the past few months. As we become reacquainted and welcomed  new readers to the tribe, I thought it was important for me to articulate why it was important for me to not only accept “Plan B” buHOLESt to actually embrace it.  One of the definitions of embrace – according to Professor Google – is “the act of taking up” or “supporting something willingly,” and that perfectly captured the approach I chose when I realized that these new afflictions were not temporary visitors.  I love to talk  write,  I have a unique perspective, and a platform from which to share our story…and no matter what the situation is, we all face some type of plan B, and we always have a choice as to how to respond.

Over the past two years, our family has encountered  “opportunities to practice resilience” in multiple arenas. I’ve referred to this persistent state of flux as our “eternal game of whack-a-mole” and, ohbytheway, last year I competed against my son in an actual game of whack-a-mole and he was amazed at my score, presuming my advancing age would correspond with delayed reaction time.  But I’ve been whacking moles for the two past years, and enjoyed “dropping the mic” on that one. From diagnoses, to injuries, to employment changes, home repairs, collapsing ceilings, moving, grieving, healing, launching a company, and beyond….we’ve come to expect the unexpected.

But never have I ever had to buck up, put on my big girls pants, and dig deep for resilience because of the outcome of an election. (And if you are one of my tribe who was happy about the outcome of the election, I am humbly asking you to bear with me for a few more paragraphs. You’ll see why, if I manage to land this plane. It may take two posts.)

lamottOur political identities are born of our unique circumstances. I have dear friends who have given generations of military service and usually vote for the party that (they believe) best represents their service and sacrifice. Others in my circle have been raised in faith traditions that dictate a stance on social justice and conscientious objection, and feel that “a different party” best reflects their worldview. I was blessed to grow up among both “camps” and I know that there are amazing people on both sides. 

My understanding of faith informs my vote in a way that leads me to typically put checks on the left side of the ballot.  (Yep, I  did it. I just went there. ) My own Godview prods me to vote to preserve creation, and to protect our natural resources.  My faith dictates a pro-life stance that I can’t find a box for – a desire to prevent unnecessary deaths due to gun violence, and to do away with the death penalty because (I believe) that we don’t have the right to end another’s life.  I want to welcome refugees, and I believe we have enough resources to spread our nation’s substantial wealth around. I want parents to equip kids to prevent pregnancy.  I want people to be able access to medical insurance and education. I want all babies to be born, but to also be fed and cared for even if their parents can’t afford it. (Cue bleeding heart liberal soundtrack)

So yes,  my lens of faith informs my vote, and I know the same is true for many of you….it just does it in a different way. But does that make ME “less” faithful? And in the reverse…do I see YOU as more or less faithful because you live out (and vote from) your theology in a different way? (Are my “red” friends still here?)

 

little giraffe

My friend Chris painted an April for me, with proceeds going to the American Liver Foundation.

NEVER before have I witnessed such rampant “defriending.” Perhaps that’s why the whole country gathered around their laptops last April, waiting for a giraffe to give birth. Finally, there was something we could all agree on…the world needs more live giraffe births. And guess what…we’re gonna get one!! (More on that  later) For now, the bear cam will have to do.

I think there are layers upon layers as to why we can no longer cross the aisle and forge a compromise, and I see the polarization dividing our church pews as well. I believe one of our biggest issues is that the art of discourse has disappeared. We’ve stopped “purpling” all together. And it’s making me sick.  

I don’t know about you….but when it comes to our political climate, I feel terrible ALL OF THE time. I am not succeeding at embracing this Plan B.  Trump supporters are mad at Democrats and call us whiners. Democrats are calling Trump supporters “baskets of deplorables.”  And it’s all just poison – and while it doesn’t directly affect my health, it probably indirectly does.

Life is so much better at Disney World.

purple.jpgWhat if we tried to find a new way forward.  Could we agree to try to agree? To find common ground. To pursue peace and perspective and to listen. During that horrible election season, I showed my sons a clip from the 1988 Bush/Dukakis debates. I knew that the art of political discussion replete with MANNERS had completely disappeared but we were stunned by the stark contrast of their discussions when held up against the most recent season of political ick that we were all subjected to. One thing is for certain...it’s not going to start with Washington.

Maybe we’ve strayed too  far from our 70’s hippy roots with each campfire beginning with “Let there be peace on earth.”

So perhaps it can begin here. Or in your home, or your neighborhoods.  I love purple. More tomorrow. If I have any friends left.

 


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/