A Face of Lyme Disease

A Face of Lyme Disease - Under the Monkey Bars blog

I was so exhausted the other day. I felt like a zombie. All I wanted to do was crawl into my cozy bed and read, but there was dinner to make, dishes to wash, and laundry to finish.

I could barely put one foot in front of the other. The minute Don walked in the door, I disappeared upstairs. I’d been dying to try this charcoal mask my friend Gia sent me from Beauty Counter and it was calling my name.

After I put the mask on, I saw the face of Lyme looking back at me through the mirror. My skin was the exact shade of our bathroom walls. I could have disappeared. My face hardened to the point that I couldn’t speak. In that moment, I became my chronic illness: invisible and silent, blending into the world.

I often get asked what it’s like to have Lyme disease. Before I was diagnosed, I truly had no idea. I thought that if someone got bit by a tick, they would take antibiotics and be cured. Unless you catch Lyme right away, it’s not like that at all. It’s really hard to describe what it feels like, but gray comes pretty close.

Every day I fight to participate in my own life. Besides the annoyance of taking medicine every day, there’s the rollercoaster of aches and pains, the tilt-a-whirl of nausea, and the marathon of exhaustion. There’s too many ups and downs to keep track. The worst part is never knowing what each day will bring and the fear and anxiety it creates.

Some days I feel like I’m lost. People describe it as brain fog. I walk around feeling uncertain of what to do next as the clock ticks on. I can’t remember things. I don’t feel like I’m in charge. It’s an awful feeling and unfortunately it comes and goes at least twice a week, some days worse than others.

I still have mono but the symptoms are lessening. I’m past the extreme heaviness, but feel like a zombie sometimes — especially after a busy day.

I’m thankful for the healthy food choices I make because I know it’s helping my body heal. The doctor who developed the herbal protocol I’m taking, Dr. Cowden, recommends a diet free of gluten, dairy, corn, soy, and sugar. I was mostly eating this way before my Lyme diagnosis a year ago. I’m more mindful of what I put in my body now more than ever. I really can feel the difference.

I’m so ready to be healthy every day. To wake up in a good mood, ready to greet the day. To feel good all day every day for a whole week. To go for a long walk, drink a glass of wine, and not worry about overdoing it. Enough already, Lyme. 

Life isn’t always unicorns and rainbows, but I much prefer when it is.

I still have Lyme…with a side of Mono

I Still Have Lyme - Under the Monkey Bars blog

Lyme sucks. That’s been my motto lately. Here I am 10 months after diagnosis and I still have Lyme disease…now with a side of mono. 

It’s been a while since I wrote a post about Lyme. Frankly, I don’t like to give it any more time than it takes up already. From the moment I wake up until I turn my bedside light off at night, it’s lyme lyme lyme. Daily aches and pains combined with exhaustion is really starting to wear me down.

When Don got injured in early March, I stopped taking my antibiotics so that I could take care of him. I knew I couldn’t handle another antibiotic at the time so I started the Cowden herbal protocol shortly after that. I’m on day 53 today.

I feel much better on the herbal drops, even though I have to remember to take them 4 times a day. It’s insane how much of the daily discomfort I’d been experiencing was just being on antibiotics for an extended period. I’m so thankful I no longer have the joint pain and difficulty walking that I did back in January and February on the antibiotic Tindamax. Over the past several months, I’ve learned that different kinds of medicine brings out different symptoms. It’s really interesting but no fun at the time.

I’m still having herx reactions on the Cowden. Lately, my left eye has been twitching a lot with severe pain in the sockets of my eyes and right ear. I have neck pain, back pain, fogginess, excessive sweating, a hung over feeling most mornings (without drinking!), and I’m mixing up words or having trouble finding the right word. That’s it. Honestly, it sounds like a lot but it’s way more manageable than before. Probably because I’ve killed off some of the Lyme bacteria at this point.

A few weeks ago, I found out that the mononucleosis or Epstein Barre Virus I had in 1999 has resurfaced as a result of my weakened immune system. It’s crazy that mono can actually do that. I’m not contagious: just really, really tired. Like I can’t get out of bed in the morning tired — and I’m usually a pop out of bed and greet the day without caffeine kind of girl. It’s such a drag.

Please don’t take this as complaining. And don’t be sorry for me. It is what it is. I can’t change the fact that I have Lyme disease, but I will tell my story in hopes that it will help others get diagnosed faster.

Many thanks to those of you who have reached out to share your Lyme stories. And I’m so happy I was able to help those of you who were suffering without a diagnosis. I love hearing from you so please continue to drop me a note in the comments or email me directly. I started this blog to share information to help us live healthier lives — without even realizing I had Lyme at the time. I truly believe that helping people is what I’m meant to be doing right now. 

The ticks are really bad this spring. Please check yourself and your family for ticks daily. There are sooooo many Lyme symptoms so refer to this list and look out for friends and family who have random things popping up. Thanks so much for reading this post and supporting Under the Monkey Bars!

The Dr. Su Series: Opening Lyme’s Door

Opening Lyme's Door - Under the Monkey Bars Blog

By guest blogger Dr. Mark Su

Christine has courageously shared her journey and struggles with Lyme disease. In response, I was moved to share my reciprocal journey and struggles in becoming a physician who evaluates and treats Lyme disease, which I believe sheds some light on the challenges that patients face in being diagnosed or treated for Lyme.

I vaguely remember a couple of patients during my residency years at Tufts University in Boston where Lyme disease was a topic of consideration for their symptoms. It simply wasn’t something we either encountered or considered, for a variety of possible reasons. We were taught the textbook information on Lyme disease, but that was the extent of it.

When I started working in Boston’s North Shore in 2003, my awareness of this illness first took root. Sure, I saw folks with the classic presentation of fever, headache, neck stiffness, muscle aches, and a large red rash or sometimes a “bullseye” not uncommonly following a known tick bite. At the time, I treated them accordingly as I was taught with 2-3 weeks of doxycycline. But I also met patients who reported persistent symptoms that would come and go to various degrees over time, even great lengths of time. These patients commonly had a strong overlap in symptoms with others who carried a diagnosis of fibromyalgia or chronic fatigue syndrome. Often times, we wondered together whether they were being recurrently infected by repeated tick bites? At other times, we would pursue testing for other diagnoses, almost universally to no avail.

Over time, I met more and more patients who would report receiving symptom benefit for their chronic symptoms whenever they were on antibiotics for other reasons; or that they historically had received antibiotics periodically for these “flares” from another physician (or even physician friends, off the record), though an explanation for why the medications seemed to work eluded the prescriber. Listening closely to their stories and recognizing them to be legitimate symptoms, I concluded that they deserved to be treated with antibiotics, even if I couldn’t fully make sense of it. It wasn’t what I was trained to do. It wasn’t the standard of care. But it was the humane thing to do. And to me, the right thing to do.

I continued to see patients who generally fit this type of profile over the years. Symptoms would somewhat vary, but the number of these similar experiences mounted, and they were generally similar stories. In some cases, I was able to create some model of rationale for myself and a given patient, but for the large part, I still couldn’t fully explain this phenomena. I wanted to learn more about persistent Lyme disease and the reported varying presentations of even more acute Lyme disease, but I simply didn’t have the time. Nor did I feel I had the energy or mental space to tackle something that I suspected could cause a rather significant deviation in my professional practice patterns and routines. I was very open minded, but I was also scared of what might be behind that door. And the ramifications of what I’d discover – because I knew that if I uncovered something worth pursuing, for the sake of helping patients, I would feel obligated to do the right thing, the humane thing, and search for the truth, as challenging as it might be.

In the latter years at my previously employed position, we as a practice diagnosed and treated folks with Lyme disease more aggressively than most traditional practices. It wasn’t until I started my own practice here in Newburyport in mid 2014, with primary intentions unrelated to Lyme disease (little did I know), that, upon establishing the regular pattern of using the premier specialty lab for Lyme testing, my eyes were truly opened wide more than I could have expected.

I uncovered enough patients with previously undiagnosed Lyme disease that I owed it to myself to seek more education, so I finally went to a specialized conference with ILADS, the International Lyme and Associated Diseases Society. It was there that I was confronted, in a massive way, with the evidence-based literature that not only substantiated bits and pieces of information I had gleaned from various colleagues over the years in one fell swoop of structured presentation. It was also there that a light went on inside of me – my passion was lit. I realized I had a whole new knowledge base and set of tools to help patients who commonly are left to fend for themselves. These patients typically lack diagnosis or treatment options, finding themselves referred to a multitude of other practitioners in hopes of a diagnosis, trying anything to feel better, and to validate their health experiences often with little to no benefit. Since then, after continually diagnosing and treating patients with this frustrating and sometimes debilitating condition, I have continued to ask myself, with what I believe to be a healthy self-analysis or perhaps even self-doubt, “Is this really real? Do this many people really have persistent Lyme disease?” Yes Mark, they do.

Patients often voice frustration to me about the confusion they experience as a result of the conflicting voices within the medical community about this condition. I really do feel for them. As much joy and fulfillment as I may have to validate a patient’s experiences, that they aren’t “crazy” or “just stressed” or “just getting old,” but that indeed they have Lyme disease and that indeed there is hope for treatment and a better quality of life. I do not take any pleasure in contradicting any previous conclusions they experienced from others in the medical community. Because I was there once before. And I know the struggles I faced to remove those blinders, even as an open-minded practicing physician who had my suspicions. When facing potential scrutiny and criticism from opposing voices, and even more so, a disruption in professional routines and comfort zones in the context of an already stressful and undesirable work-life balance, it’s simply easier to maintain the status quo and to just keep moving on. But wow, am I so overjoyed that I opened that door. It’s been more than worth it to help these patients, and there’s a whole new chapter to be written in this journey.

—————
Mark Su, MD is a graduate of Cornell University and Indiana University School of Medicine. He was later the Academic Chief Resident at Tufts University in Boston and received the national Mead-Johnson Award for outstanding scholastic performance in a Family Medicine residency. He has practiced medicine in the north shore of Massachusetts since 2003, opening Personal Care Physicians in 2014. Mark is passionate about basketball, loves his wife, is religious about fitness, is a dutiful father, and is enamored with photography. With four children and his wife in healthcare research, he often feels like he’s barely able to hang on to his own Monkey Bars! Mark defines himself as a patient advocate, a truth seeker standing for justice, and God-honoring.

Lyme Update

Lyme Update - Under the Monkey Bars Blog

I was diagnosed with Lyme disease back in July. Had I known that there were symptoms for Lyme beyond joint pain, I might have caught it sooner. Dr. Su, my primary care doctor and guest blogger here at Under the Monkey Bars, estimates that I’ve been infected with this terrible chronic disease for about 3 years.

I never found a tick. I didn’t see a bullseye. Without gluten or dairy in my diet, I only had joint pain a few times over those years but always thought it was from exercise.

What I did have were symptoms that cycled through my body sometimes monthly or even every couple of weeks. They would last for two or three days and then disappear. When they came back, I’d usually forget that I had them before. Typical Mom with a full plate, right? Don started calling these symptoms the “ailment of the day.” It was a funny joke for a while…until we realized it was a disease.

Currently, my symptoms include pain at the base of my neck, congestion, ear pain, nausea, headaches, soreness in my feet, burning sensations in my back, hip pain, dizziness, night sweats, facial twitching, blurry vision, mixing up words, difficulty thinking or foggy brain, severe fatigue, lower abdominal pain, and dental pain. Not once did I mention these symptoms to Dr. Su over the past few years.

Instead, I went to my podiatrist for the foot pain. My chiropractor helped ease my back pain. The eye doctor couldn’t figure out what was going on with my eyes. Maybe I needed glasses? But with 20/20 vision? I told my gynocologist about the lower abdominal pain and night sweats. My blood work was normal but I had appendix surgery to alleviate the lower abdominal pain. My appendix was perfectly normal and I still have the abdominal pain. It was Lyme disease the whole time.

In the four months since my diagnosis, I’ve helped several friends through the testing and diagnosis process. It’s amazing how many people are walking around infected with Lyme. Many people get false negative test results because reliable diagnostic tests are not widely available. The FDA approved Lyme test from the early 1990’s only measures 3 markers of the disease and frequently yields negative results for people who are suffering from Lyme disease. Not all providers are able to order the iGeneX test, which takes 3 weeks for results but is worth the wait. iGeneX tests for 15 markers of the disease, making this private test much more accurate. 

I’m on a 6-month regimen of Ceftin, Azithromycin, and herbal supplements (parsley oil and glutathione) to treat the Lyme disease. Most people don’t realize that when you start the antibiotics, you feel worse before you feel better — for about 4 months. I have more frequent symptoms now than I did before I got diagnosed. It’s called herxing or a herx reaction, which occurs when dead bacteria release toxins into the blood and tissues faster than the body can handle it. Regular Lyme symptoms are amplified while your body tries to get rid of the new toxins.

I’ve figured out a few tricks to help my body work through the symptoms. I’m resting more than ever. I take gentle yoga classes twice a week to help with the joint pain. I see my chiropractor religiously every other week to manage the neck and back pain. I keep a weekly appointment for nerve stimulation treatments from a Myokinesthetics specialist. I take multi-strain probiotics every day at lunch time between antibiotic pills. I drink a cup each of black and green tea daily, as well as tons of water with lemon to help my liver flush out the toxins. Eating clean definitely makes my body heal faster. I follow a gluten and dairy free diet that’s heavy on leafy greens. I still have Lyme symptoms but I feel a lot better when I can take the time to help my body release the toxins.

Everyone’s body is different. Lyme disease is like a chameleon, constantly changing so that you can’t catch it. Sometimes people call Lyme disease an invisible illness. Most people who have the disease look fine, because the majority of the symptoms are internal. I’ve learned that I can turn it off and on sometimes, much like an actress. If I ignore my symptoms and have a fun night out, I’m recovering at home for two days after. When you have Lyme disease, you wake up most days feeling like you have a horrible cold plus a hangover and sore from a work out that you didn’t have energy to do.

The road ahead is still long for me, but I know that if I take care of myself, by body will heal. Lyme disease can happen to anyone. Chances are at least one of your friends is infected with Lyme and doesn’t even know it. Familiarize yourself with the symptoms so that you can help others get a faster diagnosis — and be able to diagnose yourself.

Know someone with Lyme? Don’t ask them how they are feeling. Try asking, “How are your symptoms today?” Be flexible when they cancel plans, because some days we just can’t pretend we’re okay. Some days I’m not okay at all. But life goes on, and I’m super thankful for the incredible friends and family who have helped me through this difficult time.

Be informed and be healthy, and always remember to check for ticks!

I Have Lyme Disease

I Have Lyme Disease - Under the Monkey Bars

This is it. My most revealing post so far. I feel naked already. I have Lyme disease. There, I said it.

Please don’t say you’re sorry, because no one is more sorry than I am. I’m writing this post because Lyme disease is so controversial that most of us don’t even know the symptoms or how different the treatment plans can be. I didn’t, and I wish I had known.

I pulled a tick off my back a few years ago after working in the yard. I didn’t get a bullseye. I didn’t get flu symptoms. Maybe it it was that tick or another one that I never found — most people don’t see the tick that infects them. I’ve thought long and hard about when I got it, but it really doesn’t matter. Either way, I have Lyme disease.

I would still be walking around not knowing I have this bacteria growing inside me if it hadn’t been for a few chats with a friend, who recently got diagnosed with Lyme herself. She started telling me some of the symptoms, most seemingly ordinary. Headaches, ear pain, back pain, jaw pain, congestion, difficulty concentrating, foot pain, and so many other symptoms. She had stopped telling people how she was feeling because she felt like she was complaining all the time, and that they would think she’s crazy.

And then she mentioned that her husband said she had a new symptom every day. I said, “You mean like the ailment of the day?” And she said, “YES!” I sat down and took a deep breath. Because for the past few years when Don gets home from work, he asks me, “What’s the ailment of the day?” The girls laugh, but every day there seems to be something that’s bothering me. And it somehow became the norm.

One day I’d have an ear ache, and then it would go away. I’d feel like I was getting a cold, and I’d miraculously fight it. I’d think, “I’m so healthy that I beat that cold!” I started going to the chiropractor more often for pains in my neck and back, and more recently my hip.

Sometimes my legs would hurt when I finished climbing the stairs to our bedroom on the 3rd floor of our old Victorian. I’d blame it on the barre class I went to that day or the day before. I knew that joint pain was a Lyme symptom but didn’t realize I was having joint pain at the time.

Some days I’d feel so tired that I could cry. But everybody’s tired, right? I started using those words as a mantra in my head, “Everybody’s tired.” And I’d keep going, crossing items off my To-Do list and taking care of my family.

It always seemed that the symptoms were worst around that time of the month. So I blamed my P, as I call it. For almost three weeks out of the month, I could blame hormones. A few times I had night sweats, which I only mentioned to my gynecologist, not my primary doctor. My blood work came back normal so my gynecologist said not to worry about the night sweats.

I’m so focused on the kids and running the house that I rarely keep track of myself. Not once did I think it was odd that I keep getting weird aches and pains…because they always went away in a day or two. They never lasted long enough for me to even tell my primary care doctor. In fact, at my annual physical in May, I told Dr. Su that I felt great. It never occurred to me that something was wrong, very wrong.

That’s the thing with Lyme disease. It’s so good at disguising itself. Which is why it’s so hard to diagnose. Many people get false negative results because reliable diagnostic tests are not widely available. The FDA approved Lyme test from the early 1990’s only measures 3 markers of the disease and frequently yields negative results for people who are suffering from Lyme disease. Dr. Su ordered me the iGeneX test, which takes 2-3 weeks for results but is worth the wait. iGeneX tests for 15 markers of the disease, making the test much more accurate. It also tests for co-infections, which is another controversial area of Lyme. And yes, I’ve got one of those too: Bartonella.

When Dr. Su examined me the day we went over my results (7/8/15), he said he would have diagnosed me with Fibromyalgia if we didn’t know it was Lyme disease. I’m on two antibiotics, which I’m thrilled to say that I’m not reacting to!! I have 4 drug allergies so I was super stressed about taking anything; it’s been years since I took antibiotics. My treatment plan is taking these two antibiotics for at least six months, while continually evaluating symptoms as they arise.

After going over all of my symptoms and thinking back to how long it’s been, we’re estimating I’ve had Lyme disease for three years. My symptoms have worsened over time, but that’s not the case for everyone. Dr. Su says I have a better outlook of healing because of my healthy lifestyle. Our goal is three months of symptom remission. He may try cycling the meds and possibly some supplements like glutathione once I’ve been on the antibiotics for a while.

Right now, I’m getting ready for the herxheimer reactions, known as herx or herxing. These reactions are the result of massive die-off of pathogens by the antibiotics. The dead or dying microbes release toxins into the body, and symptoms result until the body is able to process and eliminate these toxins, or detox. Sometimes herx symptoms are worse than usual Lyme symptoms and often feel like the flu. Fun times ahead!

I wake up each morning not knowing how I’m going to feel. Every day, every hour is different. I’m really thankful to have planned a low key summer with the monkeys. I’m trying to trust in my body. Trust it can and will heal itself. Taking life one day at a time.

If you think you have Lyme disease or know someone who may have the disease, seek out a specialist who sees Lyme cases frequently. Lyme is a complex disease that is difficult to diagnose. Educate yourself and learn the right questions to ask. Know the symptoms so that you can catch it before you have chronic Lyme. Trust me, you don’t want to mess with Lyme. If you live in a tick infested state like Massachusetts, do tick checks every night. You might even consider having your yard sprayed by a professional.

Be smart and be healthy, friends. And don’t forget to check for ticks (couldn’t resist linking to the song)!