Yesterday, Reader’s Digest published an article I wrote on three, incredible women battling Lyme disease. I am so proud to call these women my friends. To view the piece on the Reader’s Digest website, please click here. Feel free to leave a comment about your own struggles with Lyme disease.
Please note: This article originally appeared on ProHealth on December 21, 2016
Yeast overgrowth is a common concern for Lyme patients who undergo long-term antibiotic therapy and certain herbal antimicrobial treatments. While numerous antimicrobials can affect the delicate balance of the gut flora, broad spectrum medications like amoxicillin, minocycline, doxycycline, and clarithromycin (just to name a few) pose the greatest risk of destroying healthy intestinal microbiota allowing yeast to flourish. One such yeast you’ve probably heard about is Candida.
Certain levels of Candida are a natural and ordinary part of the flora in the intestinal tract. When Candida levels are healthy, they aid in the absorption of nutrients, guard the intestinal tract against other pathogens, and support the immune system. However, when Candida levels become imbalanced and overwhelm the body–a condition known as dysbiosis–you may experience a whole host of symptoms in addition to those associated with Lyme disease.
Although it can be a challenge to distinguish the symptoms of Candida overgrowth from the complex expression of Lyme disease, some signs that your body is battling an upsurge of yeast include: digestive disturbances, bloating, fatigue, inflammation, hormonal imbalances, mood swings, brain fog, vaginal yeast infections and itchy skin. In fact, yeast overgrowth can lead to a spike in inflammatory cytokines–potent inflammatory chemicals in the body–leading to a worsening of many of your Lyme symptoms. Food allergies and sensitivities may also develop as a result of this imbalance in your body.
The majority of Lyme patients are likely to encounter Candida overgrowth at some point during their treatment. Using a combination of prescription medications (when necessary), anti-fungal herbs, and dietary changes, you can bring balance back into your intestinal tract. As naturopathic doctor and Lyme expert Dr. Nicola McFadzean says, “Since the gut has its own immune and neurological systems, keeping the natural ecology in balance is key.” Below are six ways to help keep Candida in check throughout your Lyme treatment.
1. Limit your intake of sugar.
Sugar and substances that break down into sugar in the body are foods that fuel yeast overgrowth. To control yeast, you’ll want to eliminate your intake of sugar as much as possible–including both simple and complex carbohydrates, alcohol, and fruit. If you’re waging an ongoing war with Candida, you might need to remove these items completely from your diet. While this step is not always an easy one to take, it’s one of the best ways to strengthen your immune system.
2. Add fermented foods to your diet.
In a previous article called, Six Things You Can Do To Improve Your Gut Health When You Have Lyme Disease [http://www.prohealth.com/library/showarticle.cfm?libid=29182], I discuss the benefits of increasing your intake of fermented foods. Foods like sauerkraut, kombucha, pickles, and kefir are gut-friendly nourishment that support intestinal health. Fermented fare provides your body with essential probiotics, enzymes, and vitamins that can help shield you from a whole host of pathogens.
3. Take a quality probiotic.
Probiotics are beneficial bacteria that restore and replace the healthy gut flora that been destroyed by long-term treatment. The dose of probiotics and the brand you’ll want to take will differ depending on your doctor and your protocol. However, they are a must-have supplement for anyone going through Lyme treatment. Additionally, they aid in digestion and help your body assimilate the nutrients that you take in.
To find the probiotic that’s right for you, it’s best to ask your physician for advice. They may have a preferred brand they want you to take.
4. Don’t forget about Saccharomyces boulardii.
Sacc what? Don’t worry. It’s known as Sacc B. for short. Sacc B is a beneficial yeast that functions as a probiotic in the body (surprisingly, not all yeasts are bad). Like the helpful bacteria mentioned above, this organism also contributes to defending the gut against disease-causing bacteria and yeast. Studies suggest that Sacc B might be useful for managing Clostridium difficile (C-diff)–a dangerous gastrointestinal infection that can be brought on by the overuse of antibiotics. One such study, entitled “Influence of Saccharomyces boulardii CNCM I-745 on the gut-associated immune system” was published in Clinical Experimental Gastroenterology in September, 2016. Many other similar studies show that Sacc B may support GI health in those with irritable bowel syndrome, as well as in those with urinary tract conditions–among other conditions that are relevant to Lyme patients.
5. Try herbal remedies.
In addition to dietary changes and probiotics, your doctor might decide to place you on a combination of natural anti-fungal treatments to correct yeast overgrowth. Herbs like garlic, olive leaf extract, pau d’arco, caprylic acid, oregano oil, and grapefruit seed extract may help support a healthy balance of yeast in the gut; they are sometimes used alone or in a combination Candida support formula. Be sure to consult with your doctor before adding any herbal remedies to your protocol. Certain ones may interact with your medications.
6. If the problem persists, there are prescription medications.
Anti-fungal medications like nystatin and fluconazole are commonly prescribed for treating yeast overgrowth. Nystatin is generally safe and efficient at killing yeast in the gut without toxic or harmful side effects. Fluconazole is a more potent medication, and it’s used when there’s a more serious or systemic problem with Candida. Some medications, including antibiotics and herbal remedies, may interact with this drug, so let your doctor know what you are taking before you begin fluconazole.
With a combination of lifestyle and diet changes, natural treatments, and prescription medications, symptoms associated with elevated Candida levels may greatly improve.
Balch, J.F., & Stengler, M. (2004). Prescription for Natural Cures. Hoboken, NJ: John Wiley & Sons.
Crook, W. (2005). The Yeast Connection And Women’s Health. Jackson, TN: Professional Books, Inc.
McFadzean, N. ( 2010). The Lyme Diet. South Lake Tahoe, CA: BioMed Publishing Group.
Teitelbaum, J. (2007). From Fatigued to Fantastic. New York, NY: The Penguin Group.
(“I hear rumors that I am well. Someone mentioned it to ‘this’ person, ‘this’ person then told ‘that’ person, and finally, ‘that’ person told me that I am doing great. I am flattered people think I am doing so well, but the reality is much less glamorous.” More Than 43,000 Pills Later, October 23rd, 2015).
Where do I begin? I’m lying in bed typing, trying to push through the fatigue. I’m exhausted. No. I’m depleted. But that’s often the case with chronic Lyme disease. What can I say that you don’t already know? Some days are terrible. Some days are okay. I feel like a broken record sometimes–repeating the same verbiage day in and day out. Three years into treatment and yes, I’m still sick. Although you probably can’t tell by looking at me.
I’m still fighting Lyme disease. October 2015-January 2016
My healthcare team uncovered a Babesia infection–a malaria-like parasite–and a high viral load. Since I didn’t have the obvious symptoms of these infections, I had some doubts about this diagnosis. I had done the immune-boosting, GcMaf therapy with Bravo Probiotic for several months, so I encouraged my nurse practitioner to intensify my treatment. I wanted 2016 to be my best year yet, and I thought I could tolerate an aggressive regime. Initially, I had some good moments. I went ziplining, celebrated our ninth wedding anniversary, Thanksgiving, and my birthday. Then, without much warning, I got knocked down. I crashed so hard I could no longer lift my head from the pillow. My mother, who I rarely get to see, had come for a visit over Christmas. Sadly, I spent two days of her time here lying in bed. After the new year, I spoke with my nurse practitioner, and she ordered me to stop all medications and have some blood work done. Sure enough, my test results confirmed elevated liver enzymes and kidney function, and I was told to stay off all medications until my overworked organs were back in their normal ranges.
I’m still fighting Lyme disease. January 2016-April 2016
Two months. That’s how long it took for my liver and kidneys to return to normal. Following this setback, I became angry. I was angry that I was undertaking such a fierce treatment protocol without the support of knowledgeable, local physicians. I was angry that no matter where I went for healthcare, I was thrust into the role of patient, advocate, and educator always having to point out the inaccuracies of testing and the old, erroneous treatment guidelines. Lyme disease is serious; in some cases, it’s deadly. I had to explain this bitter reality to every physician I met. If it weren’t for a select group of doctors willing to put their licenses and careers on the line for me, I would be dead. Period.
That’s a hard pill to swallow.
Eventually, I consulted with a Lyme Literate Medical Doctor (LLMD) in Indiana to re-work the previous protocol that caused me to tank. The treatments I endured from him were intense–like knock-you-on-your-ass intense. But I persisted because that’s all I knew how to do. Days went by, and I was stuck in bed again trying to figure out the next step (I’m always trying to figure out what’s next).
In March, I began weekly intravenous, ultraviolet light treatments. It’s an alternative intervention, but I heard promising reports that people were close to remission with this treatment. It was a pricey and sometimes painful attempt, but the hope of improving my quality of life was dwindling. At this point, the tremendous financial burden this placed on my family and me seemed worth the risk.
I’m still fighting Lyme disease. April 2016-July 2016
For awhile, I was improving with the new combo of medications and the UV treatments. In May, my husband and I took our first plane ride in eight years. We went to Nashville to visit some friends. While I was nervous about the large quantities of medication I had to bring with me, things went pretty smoothly. I came back from the trip feeling like I was making progress with my health–this time for good. I couldn’t believe I had conquered such a huge healing milestone!
In June, we adopted a new puppy. For a short time, I was the owner of THREE dogs! The puppy brought new energy into our apartment, and I enjoyed many walks with her through our neighborhood. Sadly, my upswing was short-lived, though, and I ended up in the emergency room after battling a colitis-type episode for a few days. While that episode resolved, I quickly began heading downhill once more. By July, I no longer saw benefits from the UVLrx treatments or my medications. The fatigue came back with a vengeance as I struggled to preserve the improvements I’d made. Sliding backward is a heartbreaking part of this illness, I’ve learned.
I’m still fighting Lyme disease. July 2016-October 2016 and beyond
So, shouldn’t I be used to this by now? I’m not. I’ll never get used to the anguish of the low points, or watching my dreams slip away. Sadly, my summer wasn’t what I had expected. I wasn’t able to attend my high school reunion, visit friends, family or do much of anything. In August, I stopped the UVLrx treatments at the six-month mark. Also, I tested positive for mycoplasma pneumoniae–another bacterial infection I had to contend with.
“Maybe you’ve been reinfected. Do you recall any tick bites?” my nurse practitioner asked due to my increasing symptoms. How could that be? I’d hardly left the house the entire summer! I prayed she was wrong, but I was terrified she might be right. Could I have missed one, microscopic tick? What would I do if I had to begin this journey all over again?
Then, life happened, and it forced me to put my health on hold. On October 6th, we put our almost 17-year-old beagle named Seven to sleep. Just typing her name still causes a dull ache in my heart. There’s no doubt it was her time, but it still hits me like a punch in the gut. She was my first dog, and when I was at my worst, I whispered in her ear one dispirited day, “You have to stay well until the day comes where I am strong enough to handle it.” I am grateful she upheld her end of the bargain. Even though I didn’t feel healthy, I managed her death without sliding further down the hill. Maybe I’m just too sentimental, but it sure felt like I hung on for her, and she hung on for me.
I connected with my nurse practitioner over a Zyto scan a few weeks later. The scan showed very high levels of oxidative stress, brain inflammation, and the Babesia infection from nearly a year ago.
But, there was good news too! After three years of treatment–three years of powerful medications–I no longer tested positive for Borrelia (the bacteria that causes Lyme) or the co-infection Bartonella. At least, for now. Insert happy emoji of the dancing lady in the red dress.
My nurse practitioner and I settled on a more simplified treatment plan of Malarone, tinidazole, and Tagamet. Although Tagamet is an antacid, it’s been shown to reduce brain inflammation, so I take it after meals to not interfere with my digestion. It’s still too early to tell, but I think it’s helping. Fingers crossed that it’s helping. I’m ready for a big shift to occur. I’ve been ready and waiting for a very long time…
“A wind has blown the rain away and blown the sky away and all the leaves away, and the trees stand. I think, I too, have known autumn too long.”
-e e cummings
Q: How are you doing after Brucella treatment?
A: Recently, I’ve gotten a few emails asking me this question. I treated Brucella in August of 2014. I took a combination of 600mg of Rifampin and 200mg of Doxycycline for six weeks. This protocol is one in which Dr. Horowitz recommends for his Brucella patients.
To be perfectly honest with you, I am not sure if it did anything. Brucella has not popped up on any other tests and treating it didn’t seem to yield much improvement. Additionally, I wasn’t able to tell which of my symptoms were linked specifically to Brucella. I am still battling many of the same symptoms since I was first diagnosed in 2013 (fatigue, insomnia, burning sensations in my brain and spinal cord, jaw pain, and so on). However, I am battling some of these symptoms to a lesser degree now. All in all, I can’t say that I made any significant progress in treating Brucella.
At the present time, I am treating Borrelia (still) and Babesia. This new protocol remains challenging, and although I don’t yet feel any drastic changes, I believe there maybe some subtle shifts happening inside. I just try to take things one co-infection at a time, hoping that with persistence, I can beat Lyme, get my energy back, and go on with my life.
I am so ready for that to happen!
Please note: this article originally appeared on ProHealth on January 20th, 2016.
By Jenny Lelwica Buttaccio
With 2016 well underway, many of us have recently reassessed our lives. We took inventory of what worked last year, what we hoped to improve upon this year, and constructed a well-intentioned plan to move forward in a fresh, new direction. Not surprisingly, several of us still resolved to achieve more, get in better shape, eat a healthier diet, be a better mother, father, partner, spouse, friend, etc. However, with Lyme disease and various overlapping conditions in the mix, often, our best-laid plans come to an abrupt halt. Many of us simply don’t have the strength and stamina to exert ourselves so intensely (myself included), which tends to leave us feeling frustrated and disheartened.
If this describes you, go easy on yourself. Thankfully, there’s plenty of time left to challenge the idea that you must muster up the strength to push more and try harder to have a better year. Instead, make 2016 exceptional by honoring your body exactly where it’s at, and accepting your current capabilities. By embracing a healthier mindset, may you feel uplifted and encouraged as you continue to heal. Here are four tips to renew your sense of hope and optimism this year
1. Remember that you are worth the struggle.
First, let me start off by saying–the trials you’ve endured, the tears you’ve shed over this illness, the obstacles you fought so hard to overcome—are not meaningless. Likewise, you battle a set of invisible symptoms on a daily basis that most will never see. Your unwavering determination and strength inspire others to forge ahead. Your vast knowledge helps others. Others see you as more than your illness, and your perseverance motivates them. The road to recovery is long, but please hold onto this certainty for 2016: You are worth all of the effort–all of the struggle– it takes to reclaim your health and life. Always remember, you are a person of great value to the world.
2.Find something therapeutic for yourself.
Raise your hand if you feel completely overwhelmed now and then by the usual, chronic illness rigmarole! Okay, maybe all the time (my hand shot up too). As an occupational therapist, my training taught me that a productive treatment session possesses healing, restorative, and therapeutic qualities for the patient. From a personal perspective, I learned a valuable lesson about a year into my Lyme treatment when I realized nothing felt therapeutic. My muscles held an abundance of tension, and my mind was regularly fearful. From herbs and supplements to medications, it didn’t matter what I put into my struggling body. I always reacted harshly to all of it.
Out of desperation, a quick Yelp search led me to an acupuncturist, named Tina, who had treated at least one other Lyme patient. She kindly agreed to see me that very day. I was so weak at this particular point in my illness that my husband carried me to her office and laid me down on the table. On our first visit, Tina evaluated me, and we agreed on a gentle treatment plan utilizing massage and acupuncture to relax my nervous system. Upon completion of our first session, I felt different, lighter. It was as if years of tension had melted away. This experience underscored the importance of utilizing various therapeutic modalities to help improve my health. It was a piece of the puzzle that had been missing.
Perhaps a detox bath, a massage, reading a good book, or prayer is therapeutic for you. Whatever it is, do it often. Don’t neglect to include these beneficial elements into your protocol. Your body, mind, and spirit will thank you.
3. Allow yourself to feel happiness.
Most of us believe our happiness is dependent upon our circumstances– we’ll feel happy if we are well, if we have enough money, if we were around nicer people–if, if, if.
I hear these “if” statements often. We place our delight and joy in future pursuits that may or may not ever happen, and we deny ourselves the ability to experience happiness now. In 2016, let’s try a new approach. Release yourself from the thought that you can’t be happy until your life looks a certain way. Instead, notice the little gifts and sweet surprises that each day brings. While it’s true this won’t end your hardships; it will boost your spirit as you walk the long road to recovery.
4. Stop measuring your progress by how others are doing
There is no easy answer as to why some people get well while many of us continue to be ill. What I can tell you is, your journey through this illness is uniquely yours. You will repeatedly hear about someone who got well seeing a specific doctor, using a particular treatment, trying a bold therapy, or taking a special supplement. While it’s good to stay informed of your options, it’s important to remember there is no surefire way to recover. No matter what treatment option you choose to pursue, your body tolerates what it can, and it heals at its own rate. Healing will always be unique to you and your body and different from anyone else’s. So, please stop measuring your progress by how others are doing. I mean it. Stop it. This type of comparison is instantly depressing and will immediately kill your sense of hope and optimism. Rather, focus on how far you’ve already come, because, believe it or not, you’ve already made it a heck of a long way.
I would love to hear what things you are doing to remain hopeful and optimistic in the new year. Please feel free to leave a comment.
[Note: This article originally appeared on Pro Health on December 7th, 2015. www.prohealth.com. Christmas is a time for reflection over the past year, and celebrating the possibilities for the new year. It seems appropriate to me then, that I would post this article today. Wishing everyone a very Merry Christmas, Happy Holidays and a new year filled with joy, peace, and healing. Here’s to 2016!]
October 24, 2013, was probably an average Thursday in the lives of most people. For me, however, it was a life-changing day; it was the day I finally had some answers. After numerous doctors and ten years of seriously declining health–the last 18-months of which I spent bedridden–I listened sharply on the phone as my nurse practitioner informed me, “You have Lyme Disease. You’ve probably had it most of your life.”
I was both scared and relieved to hear this news. Scared because, well, I knew I would be embarking on one of the greatest challenges of my life, and relieved because I was no longer in the dark about what to call the mysterious illness wreaking havoc on my body. The list of diagnoses I had collected over the years–from Interstitial Cystitis and Myalgic Encephalomyelitis to Fibromyalgia, and Adrenal Fatigue–all suddenly seemed interconnected. I knew the path to reclaiming my health would require patience, persistence, effort, and faith. Nevertheless, I was ready to confront the illness that had sidelined me for years. Thankfully, I had the support of my loving husband and family.
On that fall morning in October, my nurse practitioner laid the groundwork for a treatment protocol that has slowly helped me to rebuild my life, one tiny step at a time. There are layers of damage to address as a result of going years–maybe even decades–with undiagnosed, systemic infections. I just passed the two-year treatment mark. I am not cured or well yet, but I am healing. I still have ups and downs; I have flashes where it seems like remission is in reach and stages where I can barely lift my head from the pillow. In spite of all the highs and lows along this bumpy road, I am forever transformed by the lessons learned through joy, pain and, self-discovery. Here are those lessons:
Learn to resist the urge to dwell in a negative headspace for long periods of time.
In the beginning, I had spent countless amounts of energy thinking about the past; what I once was capable of doing, and the social life I had prior to my illness. Dwelling on the past immediately ushered me into a very dark, negative place in my mind. Isolated from the things and people I loved the most, the loneliness was heartbreaking. I felt hopeless, lost and frustrated. I grew too fearful to even imagine a future where joy and dreams could exist. Sickness appeared to win and overtake the best parts of me.
I am not exactly sure when the shift in my thinking occurred; but my core, my spirit, the very deepest places of me, eventually changed. I let go of anger and gave myself permission to redefine my identity in spite of the struggles I faced. In contrast, by maintaining my focus on the present and not the past, I discovered more peace within my situation. Slowly, I began to see light and hope in the places once occupied by darkness and negativity. I still struggle, but I see an opportunity for personal growth in the midst of my troubles and I choose to embrace it. I am more content nowadays as I take on these health challenges, and much less likely to contemplate the gloomy side of things.
When one chapter of life closes, a new chapter begins.
Early in my treatment, I came across a wonderful quote from Pastor Brian Houston. It reads:
“Never ever confuse the end of an era in your life as the completion of your destiny.”
The truth of his words gripped my heart with such conviction I have yet to forget them. He was right. There was no denying that an era in my life had ended. Although I grieved those devastating losses for months, I began to hope and affirm a new beginning; a season of healing and anticipation, in my life. I anchored my thoughts to the idea that I still had a purpose and a destiny, and I have not looked back.
Even though I am strained beneath the weight of a controversial illness, I know I still have a unique set of gifts and talents worth sharing with the world. I accept that Lyme disease is my present circumstance. Thankfully, circumstances can and do change. However, the destiny for my life does not. It’s so freeing to write that!
Take time to celebrate the small victories.
Yes, I still have a chronic illness, but I repeatedly test the notion that I can’t enjoy life. I frequently take mental vacations from my illness– from obsessing over it, Googling it, and chatting about it. Instead, I try to celebrate small victories and nurture my adventuresome spirit.
I snap pictures of just about everything I do. That’s become my approach to maintaining a celebratory, productive outlook. When progress seems slow to come, I can look at these visual reminders and see there have been several small victories. These accomplishments help me to combat adversity and renew my optimism.
I hope I will one day beat Lyme disease altogether. I am steadfast in my determination and more resilient than I realized. Ultimately, there are many more healing milestones to celebrate along the way.
My current treatment is aggressive and will continue to be intense for a while. Although someone else could be angry about their experience with chronic Lyme disease, most of the time, I am not. I choose to stay grateful that I have a body that refuses to give up. Another person– a different body– may have quit a long time ago. In the middle of all the chaos, there have been moments of immense happiness over the last two years. I live for those moments. They are the fuel for my soul to continue this healing journey.
Saturday, October 24th, 2015
Today is my second anniversary since beginning treatment for Lyme Disease and multiple other systemic infections. I dreamed of this day. In my mind, I expected some fanfare, a sign to mark this milestone in a very long fight. In two years, I have swallowed upwards of 43,800 pills, supplements, and herbal tinctures. I make no exaggeration. I expected to be in a different place– to be well by now, back to work, and maybe even thinking about starting a family. However, today is a decidedly ordinary day in my life with Lyme.
In two years, I have spent nearly $40,000 in out-of-pocket medical expenses. I wonder how many other illnesses drain a person of their life savings and leave very little to show for it. I don’t know the answer to this. Maybe there are more, but I can only tell my story– the story of someone trying to crawl her way to the top of the highest mountain. If I close my eyes, I imagine myself reaching the long-awaited summit. I hold out hope that I will finish this climb. I am steadfast in my determination.
In two years, my cell phone alarm has rung approximately 5,840 times alerting me to take my medications. I don’t think I have ever missed a pill. It’s habitual now. Can you be a professional pill-taker? If so, I am one. It’s absolutely second nature. I eat, sleep ( as able) and take my pills– 730 days in a row and counting.
In two years, I have taken around 1,095 detox baths, 1,095 sauna sessions, and 730 coffee enemas. No, you’re eyes aren’t blurry. You read that correctly. Coffee enemas. The funny thing is that I only drank one cup of coffee in my entire life. I really hate the taste.
But, I am willing to try almost anything if it will help. The baths, sauna sessions, and enemas give my body’s natural detoxification processes a boost at removing the toxins accumulated from killing multiple infections and ingesting several medications. It’s a necessary, but inelegant part of recovery.
Some of my medications are harsh on the gut, liver, kidneys and other organs. Blood draws are a regular part of my life to make sure we are not causing more harm than good. As patients, we joke that getting well and managing our symptoms equals a full-time job. I guess it’s not really a joke since it’s actually true. Restoring my health is the most effortful task I have ever faced.
I hear rumors that I am well. Someone mentioned it to “this” person, “this” person then told ”that” person, and finally, “that” person told me that I am doing great. I am flattered people think I am doing so well, but the reality is much less glamorous.
More Than 43,000 Pills Later…
I am not cured, healed or even “well” yet. Despite two years of aggressive treatment, I still struggle every day. To quantify a good day, I function at around 40% of my normal. That means roughly 60% of my day requires me to rest. However, most days are not 40% kind of days yet. This is still better than where I was a year ago. For that, I am happy.
While my pain has decreased, my memory is better and my sleep has improved, crippling exhaustion is the invisible symptom that troubles me the most. This is not the type of exhaustion that comes after working a long day. No, “sick exhaustion” is in a category all to its own. My energy drains and my body becomes too depleted to get out of bed some days. It’s tired from this relentless, intrusive fight. Infections still run amok underneath the surface. Maybe it’s due to the facial yoga exercises I’ve been doing, my new silk, exfoliating mitten or a super healthy diet, but my illness rarely shows on my face. I continue to have ups and downs, moments where it seems like remission is in reach, and periods of going backwards. This cyclical symptomatology is the very real nature of living life with a chronic illness. Thankfully, the setbacks are less severe than they used to be.
Treatment will continue to be aggressive for an undetermined amount of time. I sometimes get asked if I am angry about having to go through this. Most of the time, I am not. I passed the point of feeling like my body betrayed me and grateful that I have a body that refuses to give up. Another person– a different body– may have quit a long time ago. There have been moments of immense joy and self-discovery in the last two years. I live for those moments.
Here’s to another 43,800 pills, unexpected moments of joy and healing milestones. Although this journey is sometimes overwhelming, I will continue to pursue my healing with faith and persistence.
Thank you all so much for allowing me to share my story with you these past two years. To my husband, family, friends, and even strangers, your encouragement sustains me along this weary road.
As you might have realized from my blog, I love Pilates! “Draw your abdominals toward your spine.” “Wrap your shoulder blades down your back.” I hear those cues in my head when I am practicing.
I like the way Pilates makes me feel. I feel energized instead of worn out. I feel lengthened instead of compressed. It boosts my mood and helps me feel like I am getting stronger throughout my lengthy, no-end-in-sight-any-time-soon, Lyme treatment.
I recently shared my experiences with Mackay Rippey from Lyme Ninja Radio during a podcast. We covered a lot of subjects, from treatment to herxing, acupuncture to Pilates and pretty much everything in between (even coffee enemas— oh my). Below is the link to our interview. Please take a listen and as always, feel free to leave me a comment.
First, thank you so much for your nice words and comments the past few months regarding my post, A Life On Pause, through Facebook, emails, my blog and elsewhere. Tens-of-thousands of people around the world read it! I am speechless. That is the greatest compliment I have ever received. The article is even scheduled to be printed in the upcoming issue of The Lyme Times, a quarterly journal through LymeDisease.org.
I have been hesitant and excited to write this update. Hesitant because, well, there’s the fear of relapse in the back of my mind, and excited because I finally made a dent in this disease. Lyme is a sucker punch of an illness and has delivered enough low, unexpected blows to me to last a lifetime.
I’ve been treating Lyme Disease and a host of overlapping conditions for nearly two years now. My condition fluctuates between bad and worse days. This pattern has been consistent. My treatment has been intense, occasionally hurling me backward before I can move forward again. Quitting is not an option, though I sometimes fantasize about throwing all my pills in the trash. It’s not easy to take upwards of 60 pills, herbs, tinctures and supplements each day.
This is my life. When the alarm sounds, it’s time to take my medications. I have taken medications in a Chipotle bathroom, the back of a taxi, dressing rooms, the hair salon, the grocery aisle at Target, in the middle of a church worship service, even, on a Ferris Wheel (once).
This is my present, strange reality. And there are still years of treatment ahead.
However, I made a promise to myself early on in my treatment that I would never measure my progress by how anyone else was doing. I would choose the treatments that felt right for me. I do not chase after treatments in the hopes of finding a faster fix to my circumstance. I don’t have the financial means nor the energy to do so. I accept that recovery, remission and a better quality of life take time and effort. It’s more work than I could ever have imagined.
But my story begins to take a favorable twist. Those who see me, talk with me or follow me on social media know there has been a subtle shift occurring in my symptoms. I have better days. At times, even a good day:
I felt the wind whip through my hair and the sunshine on my face as I sat by the lake. I shared delicious dinners with long-time friends. I tasted my first Stanley’s donut. I walked through my neighborhood park and breathed in the fresh air. I had a wonderful 4th of July with my mother and Tom and only required a few days to recover. I took the dogs to the park. I danced to an old workout video. I hung upside down from some monkey bars. I even napped! Yes, insomnia that tortured me for years is truly improving. There is such happiness in these small victories for me.
When I look back on the last year and ten months, I feel proud. I am proud of my attitude through this journey, proud I persevere along the path of recovery and proud of the life I am rebuilding bit by bit. This has been my greatest challenge, but I now know things do get better.
I encountered a discouraging bump in the road last week. In addition to Lyme Disease, I have an inflammatory bladder condition called Interstitial Cystitis (IC).
Marked with bladder pain, urinary frequency and urgency, I have had this condition since 2005. It was fairly well-controlled for about 4 years. I even thought the most difficult days of dealing with IC were behind me. Unfortunately, this flare-up shows my bladder has more healing to do.
As I struggle to understand why I am once again experiencing such severe bladder symptoms, I decided to take a specialized urine test from a lab called Pathogenius. The lab performs testing at two different levels using a culture and DNA detection. My nurse practitioner only recently began working with this lab. Whether or not a patient improves using treatments designed around this testing method, remains to be seen.
My level one culture came back negative. However, the DNA portion of the test detected abnormally high levels of a bacteria I was unfamiliar with called Prevotella Bivia. This bacteria is not a tick-borne infection like the others I am battling. In fact, some amount of this bacteria appears to be present in healthy individuals and poses no trouble to them.
Perhaps my immune system, already suppressed by multiply systemic infections, could not keep this bacteria in check and my bladder became symptomatic again.
That’s my best guess.
After reviewing the results, my nurse practitioner presented me with two treatment options:
Option A is to instill medication directly into my bladder via self-catheterization. A two-week course of medication and supplies arrives at my house from a compounding pharmacy. It’s not covered by insurance, so my out-of-pocket cost would be somewhere between $200-$500. A second, two-week round of the instillations is usually required. For a one months supply, the total cost is between $400-$1,000. This is in addition to the $1,000+ per month my husband and I currently pay out-of-pocket for my treatment.
The pros of this treatment are:
1) It delivers medication directly into the bladder so the antibiotics do not have to bypass the GI tract where it can disrupt normal gut flora or interact with the other medications I am taking.
2) It’s an innovative new approach to treating interstitial cystitis.
The cons are:
1) It’s expensive to do and I question whether it’s sustainable for the average person over a long period of time. Several courses of treatment could be required to achieve maximum benefit.
2) Repeatedly doing bladder instillations carries the risk of contracting a urinary tract infection, which is then treated with another oral antibiotic.
3) This treatment is so new that it is not yet known what the rate of success is.
A pit in my stomach formed as I did the math. With our current situation, I felt Option A would not be feasible for me. It’s just too costly.
As FOMO set in (Fear Of Missing Out on a treatment that might be THE treatment to finally cure me), I reluctantly asked for an option B.
This option is to add yet another antibiotic to my already rigorous treatment. In this case, it would be the broad spectrum antibiotic, Clindamycin.
The pros of this treatment are:
1) It’s cheap. In fact, I would pay nothing with my insurance.
2) In addition to treating the Prevotella Bivia in the bladder, it also targets the Lyme bacteria in the nervous system.
The cons are:
1) Since this antibiotic kills bacteria from such a broad spectrum and I am already on an aggressive antibiotic protocol, it could increase my risk of developing candida overgrowth or worse, a potentially life threatening GI infection called C-Diff.
2) I need to take this antibiotic three times per day, making it difficult to schedule it around all my other medications.
3) It’s also hard on the digestive tract.
4) Because this antibiotic has penetration into the nervous system for the Lyme bacteria, there is a high likelihood of experiencing an increase in my neurological symptoms as the new antibiotic kills those bacteria.
Truthfully, I really didn’t like either of the options. Neither annihilating my gut nor going in debt seem like great solutions. In the end, I chose the only affordable route for me. I added the fourth oral antibiotic to my treatment for the next 10 days. Following completion of this antibiotic, I will re-test with Pathogenius to see if there are additional infections.
During this course of treatment, I have significantly upped my intake of probiotics and digestive enzymes to help protect my gut and decrease the risk of C-Diff and Candida overgrowth. As predicted, I am noticing an increase in my neurological symptoms and worsening insomnia has been the most difficult symptom to endure. Luckily, I am already on day 6 of my 10 day plan.
I am hoping this new treatment will shed light on potential causes of Interstitial Cystitis in some people and yield improvements in my symptoms.
I will post an update after I have completed this course of treatment.