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.

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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.

Kelly’s Breast Cancer Story

Meet my cousin Kelly Carroll, today’s guest blogger who shares her incredible story of how she survived breast cancer. Kelly is a stay at home wife and mom with a blended family that keeps her on her toes. Active in the local Charlotte, NC community, Kelly runs an outreach program for foster children called Mosaic-Style with Love. She has learned that each day is a blessing to cherish, and laughter is the best recipe for healing!  

Kelly's Breast Cancer Story - Under the Monkey Bars Blog

In September of 2009 at 38 years of age, I found a lump in my left breast. Several days later I was sent to the hospital for a mammogram. Within minutes, a radiologist said with tears in her eyes, “You have cancer and it’s bad!” She went on to tell me that I had 5 large tumors that had spread out of the breast to my lymph nodes. Her words were “you need to move quickly with treatment as this is life threatening.”  

The whirlwind began as the diagnosis was confirmed to be stage 3 breast cancer. I received my first chemo treatment within a few weeks of my diagnosis. I became violently ill within hours of receiving the 4 hour long drip of rat poison, which is basically what chemo is. It kills both bad and good cells throughout your body. A mediport was placed in my upper right chest beneath my skin for the medicine to go immediately into my main artery. The vomiting was so violent it caused my mediport to literally flip upside down under my skin. That night I thought I was going to die and I asked God: “If you know I am not going to beat cancer, please take me now as the suffering and pain is beyond comprehension.” That was only the beginning!

By the time I reached my 5th out of 10th chemo treatment (I had been hospitalized after each treatment), my skin was a grayish color and paper thin. It would rip if I just gently bumped it on something. My fingernails were gray/black and green with a few nails ready to fall off. My whites of my eyes were yellow. My throat was raw and it felt like razors all the way down when I just swallowed water. I was weak and my bones ached like the worst flu times 10 and finished off by what I would imagine felt like a semi truck running over your body. My brain cells would not fire and I could not retain names and simple words to complete a sentence. Every single piece of hair on my body was gone as the chemo kills ALL cells. There were days that I laid without the ability to move, no matter how bad I wanted to. I am a determined person and always on the go with a high pain tolerance.  

At my 5th chemo treatment, my oncologist told me they may lose me when the chemo drip went into my veins, as my body was not reacting well to the drugs. She told my family that my eyes may roll back in my head and I may stop breathing. A crash cart was pulled up next to my hospital bed and they were there waiting and ready to revive me if this happened. I am so thankful they did not have to use the crash cart that day, but the days that followed were the worst of them all. This chemo treatment was several days before Christmas and I was determined to be home with my children and my husband, not in the hospital. 

I fought my body for as long as I could until it started to shut down on Christmas Eve, when I was admitted to the hospital for 7 days. During that time, others have told me they didn’t know if I would leave that hospital. They truly believed that was possibly the time they would say their goodbyes to me. I recall a female doctor sitting at my bedside one evening when we were alone and she asked, “Do you believe in God?” She too thought these were my final days here on earth. But God had another plan and I praise him each and everyday for his goodness and his healing!  

I was released from the hospital and told by my oncologist that she could not give me another ounce of chemo or she would kill me with it. She said I also needed radiation, but my body would not respond well and it could kill me. She went on to say “all we can do now is perform a mastectomy, remove your lymph nodes and hope for the best.” I endured that painful surgery, only to find out they messed up and left more cancer cells behind. Several days later, I received a call that I needed to go back into surgery ASAP. I was still full of cancer cells and they didn’t get it all. It was then I decided to try something different from anything I knew previously: combine conventional medicine with holistic medicine.  

I went to Sanoviv Medical Institute in Baja, Mexico for integrative treatments for whole body health. Sanoviv was founded by a world famous virologist, Dr. Myron Wentz. After 4 extensive days of medical testing at the institute, a group of doctors created a treatment plan for me in a non-toxic environment. This included detoxing my body of all the harmful toxins that had built up from the chemo, as well as all of the harmful foods that I was eating. They began to teach me about clean eating. Everyday began with a pH balance strip which the doctors used each day to regulate my food intake so that I would be alkaline. Sanoviv treats cancer patients with a concept that cancer cells thrive in an acidic environment and find it difficult to survive in an alkaline environment. Cancer cells make your body even more acidic as they produce lactic acid.

Sanoviv started me on a USANA vitamin regimen. I would take about 20-25 all natural pills in the morning, in the afternoon, and again in the evening. My nutritionist provided green juices to include cancer fighting dark green leafy vegetables in my diet each and everyday. Wheatgrass shots were given to me several times a day. This is nature’s finest medicine. Two ounces of wheatgrass juice has the nutritional equivalent of five pounds of the best raw, organic vegetables. It is also a powerful detoxifier, especially of the liver and blood.  

Each day at Sanoviv, they taught me about food products my body was ingesting that are toxic. For example: beef produced in the U.S. is heavily contaminated with natural and synthetic sex hormones, which are associated with an increased risk of reproductive and childhood cancers. For other types of foods, they taught  me that if it contains more than 5 ingredients, don’t eat it! I also received high-dose vitamin C by intravenous IV infusion. Vitamin C has been shown to slow growth and spread of certain types of cancer. 

Every other day I went into a hyperbaric oxygen therapy chamber. This increases blood oxygen levels and is proven to work with a number of illnesses, and will overcome one of the main influences of cancer. Cancer exists in a low-oxygen environment and plentiful oxygen can kill it off. It has the potential to be a simple alternative cancer treatment. I also received another treatment where the doctors took about a billion of my T-cells (a type of white blood cell that fights viruses and tumors) and at the lab they inserted them with new genes that would program the cells to attack my cancer. The altered cells were given to me by stomach injections every other day.  

I witnessed miracles at Sanoviv during my 30 day stay at the hospital. I watched other patients with debilitating illnesses be cured before my eyes! I am a true believer of a holistic lifestyle. When I was 39 years old, near death, it revived me in 30 days and made me feel and look like I was 18 years old again! I still have an oncologist here in the U.S. who orders bone scans yearly to watch for my cancer to return, but I decline all of the pharmaceutical medications they say are required for my survival. I just celebrated 5 years in remission this past May of 2015.  

Each and everyday I thank God for my healing. It is my goal to live each day with true purpose!  

The Dr. Su Series: Vitamin D

The Dr. Su Series: Vitamin D - Under the Monkey Bars

By guest blogger Dr. Mark Su

As our summer draws to a close (commence the tears and sobbing), you might be wondering whether vitamin D is an ill-timed topic to discuss. Surprisingly, it’s not. Vitamin D is actually a year round challenge for most of us.

Vitamins by definition are beneficial and necessary components in our body’s every day cellular functions. Uniquely, we can make vitamin D via sunlight exposure; the sun’s rays activate enzymes in our skin to generate it for our bodies. But the amount of vitamin D generated is rarely sufficient. We tend to highly overvalue the benefit of the sun exposure we receive from the summertime, much less from seasonal time spent outdoors gardening, walking, or doing other activities. 

Dr. Michael Holick of Boston University is a premier global expert on vitamin D. I once heard him say that it’s not simply a matter of the quantity of time we spend in the sun. Dr. Holick suspects that given the United States’ location on the earth, that the direction of the sun rays may play a role in further inhibiting us from effectively having enough sun exposure to generate sufficient vitamin D. Add in genetic factors and other known or unknown biochemical processes in the manipulation of vitamin D in our body, and the end result is simply that sun exposure alone is inadequate.

The benefits of vitamin D are many-fold. Conventional medicine has historically supported its benefits for bone health, in that vitamin D enables nutritional calcium absorption. Over time, I’ve seen the conventional medical community progressively embrace other touted benefits, including an enhanced immune system, heart health protection, effects on muscles, reducing one’s risk for illnesses (like diabetes, rheumatoid arthritis, and multiple sclerosis), and even certain forms of cancer. No doubt, much research still needs to be done, but given the extremely minimal downsides of taking vitamin D compared to the significant upsides, I advocate to my patients that a vitamin D deficiency is a no-brainer to address.

The “normal” reference range for vitamin D is a level greater than 32. Those who I consider more “in the know” all agree we should aim for a level of at least 50. For individuals with a stronger cancer family health profile, we would recommend perhaps even 70. My professional observation is that in the New England area the typical individual has a level of about 25. 

What does it take to get up to the preferred level of 50? A prescription level of 50,000 IU of vitamin D ingested twice a week for at least 12 weeks, sometimes more. I usually recheck a level after those 12 weeks. If you don’t have access to prescription dosing, I would usually suggest 10,000 IU of vitamin D daily, which would require at least 15 weeks to reach that same end goal. Once the optimal level is achieved, a maintenance dosing is required to keep that level in the proper range-usually that requires 2000 IU per day, sometimes more.

While toxicity is academically possible, it is quite uncommon to rare. Nonetheless, I suggest medical supervision for vitamin D level testing; most doctors are willing to do so for their patients. There are testing kits available through trusted online companies as well, including a partnering lab with the Vitamin D Council non-profit organization. 

Vitamin K2 is a newer finding that becomes an even more important subject with the awareness of vitamin D, and optimizing the latter in our bodies. We’ll talk more about that another time in the Dr. Su Series. Until then, thanks for reading and be sure to get your vitamin D levels checked!

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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.

The Dr. Su Series

DrSuSeries
Hi – my name is Mark Su.  I’m a family medicine physician in Newburyport, Massachusetts, where I reside with my family. Christine has invited me as a periodic guest blogger, which I am certainly privileged and honored to be part of Under the Monkey Bars! 

As a physician, I am passionate about educating and empowering my patients first and foremost, but also anyone who has the interest and motivation to take charge of their health. Regularly, I have patients and friends say to me, “I’m sure you hate it when people read stuff on the internet…” to which I always respond, “No, actually, I don’t mind it at all!”  Why? Because although the internet can be a two-edged sword with both beneficial information and misinformation, I am a believer that over time, we are becoming more savvy at interpreting the information we glean from web surfing. We are recognizing what content is more valid or accurate, and what content is suspect or just plain false. Quite frankly, I’ve found my patients to be far more commonly on-target than misinformed from their internet reading to date, and I only expect that ratio to further improve. 

This is a huge reason why I am happy to participate in this blog. I know Christine well enough to support and validate her as a productive contributor to the world of the internet, with her real-world experiences as a wife, mother, and caretaker of her family, not to mention herself. Truth be told, Christine has a great deal to offer other families and individuals who have or will struggle with similar health matters as she has experienced. There’s no need to re-invent the wheel. Christine has put in a lot of time and effort in doing the legwork, and now you stand to gain!

One of my father’s most common sayings to me when growing up was, “Mark, we all have to learn to adapt and be flexible.”  And indeed, the world of health and medicine is changing.  As someone who is comfortable with the “art” of medicine (the “grey” between the black and white, if you will), I am stimulated by that changing dynamic. I’m a believer that most, if not all, reasonably professional physicians can guide and treat patients with the principles of mainstream medicine. I believe I am called to go above and beyond that. I can bring value to patients, or to this blog, by presenting educational material that is perhaps:
   – more “cutting edge” (i.e. functional medicine or genetic medicine oriented)
   – more of a mix with alternative or lifestyle medicine (i.e. focus on the importance of nutrition, fitness, detox/cleanse practices)
   – or exploring the deeper layers of what ultimately drive our healthcare decision-making processes: our life priorities and philosophies, our self identities, our perspectives on life and death, our fears, our loves.

The world as we know it is constantly changing. The internet stands at the forefront of this principle. The medical community only stands to lose by fighting this. On the contrary, I’ve jumped in, embraced this evolution, and stand arms locked with those like Christine who can help others from a real-world, daily grind position of knowledge and experience, to empower our communities both local and distant. 

This information was written without instruction or content request by Christine, and solely offered with my own volition. I look forward to adding further value to Under the Monkey Bars, educating and empowering you in the healthcare arena, while being continually stimulated by her and others’ life journeys. 

 

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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.