Friday, December 10, 2010

My Lyme Disease is Not The IDSA Lyme Disease- Infectiously Optimistic

I am writing in response to the recently published article in The Chicago Tribune, Chronic Lyme Disease: A Dubious Diagnosis.

adj\ˈdü-bē-əs\: Questionable or suspect as to true nature or quality.

My diagnosis of Late Stage Lyme Disease is a lot of things, but I've never considered "dubious" to be one of them.

When I first came across Patricia Callahan's article about Lyme Disease in The Chicago Tribune, I got hung up by the provoking title and bold subheading. In fact, the title was so provoking that it brought me back to a time when I did receive a slew of dubious diagnoses, ones that had "little good evidence of existing", before I was properly diagnosed with the late stage of an infectious disease.

It was the summer of 2007. I was 17 years old, and I was laying in a hospital bed. At 5'7 I weighed 87 pounds, my pale skin had a yellow tinge, and I had become critically feeble and weak. The beeping heart rate monitor beside my bed revealed a heart rate of 44 beats per minute, and the blood pressure cuff wrapped around my bone-thin arm revealed an alarmingly low "73/43". Doctors would come and go out of my room, reporting that my liver enzymes had reached sky high levels, I was urinating more water than I was consuming, and that my digestive system was malfunctioning at such a significant level that the tests measuring its functionality were ruling "incomplete". Yet when my parents and I looked to the doctors with imploring eyes, pleading for an answer to why my body might be caught in a downward spiral, the responses that we received were dubious.

Despite the horrific condition of my body, I walked away from that hospital stay leaving a group of doctors scratching their heads behind me, with nothing but an "IBS" stamp on my chart. I'm almost certain that there isn't a diagnosis that is more dubious and disputable than that of "IBS". It didn't explain but one or two of my symptoms, and didn't provide us with insight or a solution. It seemed illogical that a mere diagnosis of "IBS" could explain why my liver was under dire distress, why my intestines had stopped contracting and absorbing, or why my vital signs failed to stay stable. Yet, this was all that the hospital's medical team could provide me with. "IBS" stands for Irritable Bowel Syndrome, and is a condition that has little concrete evidence of having a true existence. There is no way to test for Irritable Bowel Syndrome, and it does not have a solid list of characteristic symptoms, or notable physical manifestations. It's a vague label that doctors give patients when they think they've ruled the "standard" things out, and can't rule anything else in. Yet, in Western conventional medicine, this dubious diagnosis is treated as a legitimate condition with arguably dangerous methods of treatment.

I had every digestive related drug thrown at me, and each had its own set of frightening side effects. One in particular was a well known, widely used drug called "Zelnorm". There is now a lawsuit filed against the drug, and it has been pulled off of the market after numerous instances of heart attack, stroke and death. My conventional medical physicians prescribed Zelnorm for an indefinite length of time, for an incomplete, questionable diagnosis, due to their reluctance to find the underlying cause of my symptoms. Zelnorm acted as a dubious, dangerous bandaid. 

Thus, I find it to be illogical when doctors are heavily criticized and ostracized for treating those afflicted with Chronic Lyme Disease with long term antibiotics or alternative therapies when far more desputable things are transpiring in conventional Western Medicine. I find logic in using antimicrobial herbs or antibiotics on a patient with a proven chronic infection, rather than to using a dangerous drug for an unclear reason on a patient with an unproven label like "IBS".

I was put through the infamous wringer that nearly every Lyme patient goes through with their mainstream medical doctors. I eventually received a handful of other disputable, vague diagnoses, one of the many being Chronic Fatigue Syndrome, and was offered more dangerous drugs for unclear purposes. I was offered IBS and CFS "protocols" that included SSRIs, antidepressants and chemical cocktails that are often seen on commercials on television, accompanied by the laundry list of side effects and ramifications of use. I declined, and decided to go off to college, since nothing was clearly wrong with me, right?

Wrong. Halfway into my first semester in college, my symptoms had progressed at a debilitating rate. Yet, I kept pushing myself because I had no clear answers as to why my body was malfunctioning as it was. I figured if I had showed up on the doorstep of my HMO medical facility numerous times with symptoms, and they told me nothing concerning was wrong with me, then I was fine. In reality though, I was a far cry from fine. I woke up one morning in college completely unable to move. For close to 45 minutes, I was paralized with pain. When I was finally able to rise from bed, I found that my heart rate was sky high, my breathing was erratic and labored, and my spleen had swelled to such a size that it was pushing my ribcage out from my abdomen. That's when I knew that I was really sick, and I had to seek alternative help.

By the grace of God, I ended up in the hands of a private practitioner who was educated on not only lyme disease, but other causes for debilitating chronic illness. Through him, I finally found my concerete answers. Not only did I test positive for Lyme Disease, but in testing I also showed that I had a severely suppressed immune system, one that can be held responsible for collecting the many chronic infections that I battle today. Yes, one of those infections is Late Stage Lyme Disease. Finally, I was not offered any questionable protocols and was not diagnosed with vague conditions. Based on physical evidence, I was properly diagnosed.

I do not believe that "it is all lyme disease".

I do not believe that every symptom that I've ever experienced over the past 5 years is attributed to the lyme disease bacteria, and contrary to reporter Patricia Callahan's belief, neither do my doctors. I did not choose to seek out the help of my current doctors because they treat lyme disease, nor do they just treat lyme disease. I chose to seek the help of my current medical team because they treat "the whole person". They see the big picture, and delve deeper into my issues to find the root of the problems, instead of merely putting a band-aid over my symptoms. The evidence behind the diagnoses that they have made does not just consist of a positive blood test for borreliosis, but also consists of low immune markers, autoimmune markers, adrenal hormone deficiencies, insulin depletion, positives on parasite and viral panels, and more. My doctors are not "snake oil salesmen". My doctors are physicians, detectives, and beacons of hope.

As is true for most lyme patients, my symptoms are anything but "common".

I am undeniably, horrifically ill. My medical issues are far from "common". Yet, when I go to the hospital or end up in the office of my nearby HMO medical facility, they tell me that they can't help me. They often label me with a common ailment, just to suffice my plea for help. This is why the assertions in the Chicago Tribune's article have such destructive potential. Asserting that my symptoms are "common", implying that they are "average", and concluding that my lyme-literate doctors are inappropriately treating me as they work to save my life, not only discredits my determined doctors but also strips me of validation, support, and what's left of my dignity. It leaves struggling patients like myself to battle for their lives alone.

When was the last time you had to dial 911? I had to last month, twice. When was the last time your heart rate exceeded 150 beats per minute? How about seizures, ever had one? When I ended up in the hospital last week with these obviously uncommon occurrences, the E.R. doctor took note of the list of my secondary conditions, shook his head and shrugged. As I lay there, with oxygen tubes shoved up my nose and heart monitors strapped to my chest, he said "there really isn't anything we can do for you. I don't really have an answer." They gave me fluids, kept me until I was semi-stable, and I went home. It wasn't until a few days later, when I paid a visit to my lyme literate physician, that I was able to receive some answers, some relief, and some help. The solution wasn't anything controversial, dangerous, or dubious. My doctor just took the time to figure out what was going on with my body and provided me with a logical solution, along with a side of compassion.

So, I ask Patricia Callahan, and the few other reporters who have responded in support of her article, to please take a step back and look at the "big picture". Instead of focusing on the minute details of a medical controversy, dive deeper and collect the real, raw stories from the people who are neck deep in this fight. Assess all angles, and please open your eyes to the truths that patients like myself hold. Please also understand the ramifications of writing articles like the one you just wrote. We are very sick individuals, and essentially, we're fighting for our lives. We are both physically and financially depleted. Our doctors are people too, and they're fighting along side of us to save us, despite the attacks that the media employs. Please don't muddy the waters and make their jobs any harder than they already are, because as you do, precious lives are wasting away. If you could even find it in your hearts to offer support, the Late Stage Lyme community would be eternally grateful.

Here are just a few of the many other lyme patients who have spoken out, and who have attested that "Their Lyme Disease is Not The IDSA Lyme Disease":
Alix’s letter-
Andrew’s letter-
Ashley's letter-
Kim’s letter-
Molly’s letter-

Brooke's letter-
Kim T.'s letter-
Heather's letter-


  1. Great story, Candice - thanks for sharing! As always, brilliantly written! I'm working on mine & will have it posted later today or tomorrow.

  2. Candice, this is so eloquently written. It's honest, and it speaks from the heart. In short - it's an awesome response. So powerful! Thank you.

  3. Beautiful, Candice. You speak your truth so powerfully. Thank you.

  4. Candice,

    Thanks for sharing this. So eloquently written and poignant: "Asserting that my symptoms are "common", implying that they are "average", and concluding that my lyme-literate doctors are inappropriately treating me as they work to save my life, not only discredits my determined doctors but also strips me of validation, support, and what's left of my dignity. It leaves struggling patients like myself to battle for their lives alone."

  5. I can't believe I never commented! I think your post turned out fantastic, as usual.

  6. Candice,
    I"m so happy to read your Lyme story, yet so sad that someone so young is not out and about working in the career of her dreams but instead still finding herself occasionally needing the conventional medical system which invalidates all your symptoms. It's beyond abusive. Thank goodness for your Lyme doc who has the grace, presence and know-how to make you feel understood and eventually feel better.

  7. You are a brilliant writer.

    Thank you for speaking for us all.

  8. I am so thankful to have met you and be added to your team of supporters! You are truly the epitomy of strength and courage! And, a hero for writing this! I am sure you will never know how many lives you have touched with this ONE article =) The operative word I saw in here was "HMO". Yep, I said it...i fear that the mainstream "modern medicine" doctors see those little 3 Letters and figure well "were not gonna get payed or reimbursed to find the real cause, if we treat the SYMPTOMS and keep her coming back thn maybe WE will get something out of it." I cant tell you how many times I have received this treatement. Its disgusting, sad, and I am so happy you had the courage to write about needs to be exposed! You are such an inspriation to me and im sure so many others! We will fight this all together <3

  9. What a good article you wrote. This is so incredible. I wish I was able to write to you more. Keep up the good work girl!

  10. Hi! I just found out about your Chronic Badass shirt via Shades of Awareness's blog and I LOVE your shirt! I was wondering if maybe you could make different variations of the shirt (fibromyalgia, etc) I would absolutely LOVE to purchase your shirt, but I can't since I don't have Lyme Disease.

    Plus I'm sure many others would love to buy your shirts since many fellow chronic illness babes love to buy clothing with cute/awesome messages.


  11. I know you have used Byron White Formulas. Do you know about his public teleconferences? He is having another one on April 24th at 5:30 pm. You can't beat free info on how to help ourselves!