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/

 


I really am here….

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

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

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

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

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

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