My Lyme Disease is not the IDSA Lyme Disease

fight lyme.

I am writing this post in response to an article the Chicago Tribune posted yesterday entitled "Lyme Disease: A Dubious Diagnosis", by Patricia Callahan and Trine Tsouderos. I recommend you read the article first, to understand the perspective from which I write this post.  I know this post is long, but I have a lot to say about this topic. 

The Tribune's article, in my opinion, is biased, uninformed, and a blow to the Lyme Disease community. It undermines the real face of Lyme, and is a slap in the face all of us who have struggled to heal and overcome this disease.  Determined to share a real experience of the effect of Lyme, a group of Lyme Disease community bloggers and I are posting responses to this article. We want nothing more than for the medical and journalistic community to lift the veil of ignorance, confusion, and misinformation surround Lyme Disease.  

My issues with the article

First of all, I am proud to say that Dr. Bernard Raxlen, the psychiatrist featured prominently in the article, is my doctor. I do not appreciate the way that he is portrayed in this article. I have been under his care for 1 year, during which I have flown to New York twice and have had regular phone consultations with him and his staff. In the interim, I am under the care of Leslie Vilensky, a naturopath here in Minnesota that has trained with ILADS and works with many of Dr. Raxlen's patients. I will not deny that Raxlen's treatment protocol is rigorous. But the rigorous treatment gets results.  I trust him, I am seeing improvement, and I know friends and acquaintances that credit him with their improved health.

Lyme Disease is hard to test for, an issue that the article rarely discusses. The borrelia bacteria burrow into the tissue of the body, especially in chronic cases. Since blood tests - even the best ones - only test blood and cannot detect the presence of bacteria in tissue, how can they be expected to accurately measure the presence of infection? They can't! Lyme must be a clinical diagnosis, determined from a combination of tests, symptoms, and health history. Medical professions need proper training, and need to be able to create a full picture of what Lyme looks like. In the same way that diagnosis must be a full picture, determining treatment length must be gauged similarly. The most important thing is to truly be able to listen to and asses the symptoms the patient is feeling. Our medical system needs to put more credence in our personal experiences. No one is as capable of telling me how I feel better than me. Only I can tell my doctor the symptoms that Lyme has caused, and the ways I'm feeling better since starting treatment. Sharing these personal experiences is vital for anyone dealing with Lyme, because testing is simply too unreliable. Unfortunately, most doctors do not know how to properly assess Lyme symptoms, and do not catch it, leaving people to suffer for years with no diagnosis or incorrect diagnoses.

The article completely and totally missed this as an issue, instead focusing on what they say is a prevalence of Lyme Disease overdiagnosis. The author warns readers against being unnecessarily treated for Lyme, making it sound like it would be a commonplace problem. Absurd!

The general consensus of my doctor, my naturopath, Lyme advocates and experts, and other patients is that Lyme is wildly underdiagnosed. Even the Lyme-conservative CDC and NIH admits to the fact that more people have Lyme than are properly diagnosed by the medical community. The chance that you will go to a doctor's office with symptoms and be incorrectly diagnosed with Lyme is far less likely a doctor missing your Lyme Disease and diagnosing you with something else.  For example, my cousin suffered increasingly severe health problems for 15 years, seeing doctors all around the country.  Eventually, she was treated for Multiple Sclerosis for almost a year, reacting negatively to the medications, until she finally found a doctor who told her that she has Lyme, not MS. I wish the article would have spent more time focusing on the real injustice: the lack of proper Lyme diagnosis. 

Another issue that made my skin crawl was the article's portrayal of Lyme doctors - Dr. Raxlen included - as some kind of snake oil salesmen, pushing a wide variety of dangerous remedies on patients. While I do not doubt that such doctors exist in all fields of medicine, this portrayal is slanderous, inaccurate, and totally irresponsible. My experience with Dr. Raxlen has been nothing but exemplary. He has taken great care with selecting my medications, and I do not feel like he has been pushing pharmaceuticals on me like candy. In fact, he and his medical assistant encourage me to cut back, and it was me that told them I needed to stay on the full dose.

I wish this article would have allowed Lyme-literate and  ILADS-trained physicians the opportunity to share their experiences with Chronic Lyme.  These physicians often work on the fringes of the law. I do not deny that, nor do any of them. But what choice has our medical system left them? When they see patients in pain, desperately in need of treatment, are they supposed to turn the other cheek to save their own asses? Or abide by their Hippocratic oath and do what they feel is in the best interest of the patient? I don't know about you, but I rather have a doctor that is willing to stand up for the treatment they feel is right and one that will get results - even if that means it violates archaic and inappropriate laws.

One of the reasons that it is so incredibly challenging to find a doctor that will treat Chronic Lyme Disease is because doctors don't want to risk their license and reputation. When searching for a physician, I was told by three separate doctors that they no longer take Lyme patients because they can't deal with the controversy and the immense amount of workload necessary to properly treat Lyme, nor do they want to run the risk of persecution. Doctors that do treat properly often fly under the radar, their identity only being shared through word of mouth, private messaging on Lyme message boards, or ILADS doctor searches.  The fact that these brave doctors have been forced to meet such humiliating review of their practices indicates that the IDSA-recommended treatment for Lyme Disease needs serious re-evaluation. Research must be done, and the law must be changed, or this epidemic will continue to spin out of control and doctors will be made out to be criminals. 

Additionally, I feel that the treatment protocol of Lyme Disease doctors pales in comparison to the larger problem of over-prescribing pharmaceuticals and unnecessary treatments by the larger medical community. Children are prescribed ADD medications like candy, opioid pain medication abuse and addiction is a serious problem, and pharmaceutical companies market directly to patients on television promising simple solutions through pills. Surgeries and invasive, severe procedures are often suggested rather than integrative approaches that can address root of the issue. No one can honestly tell me that doctors treating Lyme patients with long-term antibiotics and prescribing other appropriate medications is the downfall of the prescription medical system.   

Additionally, the article references studies that are admittedly flawed and out-of-date. There are no sources listed, which is disappointing given the claims made in the article.

My Lyme Story

I am not a doctor or a researcher, but I am experienced with Lyme Disease.  Why? Because I have it. I live with it. I move through it, it moves through me. People I love have it. I've felt what it can do. My symptoms and story are unique, as is the story of every Lyme patient. Our varied experiences show that this disease is complex; it is not as simple as the article in the Chicago Tribune, most doctors, or conventional wisdom suggests.  

Instead of severe onset of acute symptoms that left me debilitated immediately, my illness progressed slowly, gradually working its way into every single system of my body. I experienced a wide range of symptoms, from neurological to endocrine to digestive to reproductive and everything in between. This slow onset of symptoms gave me space to make some excuse for how I felt - maybe I didn't sleep enough or was stressed out. Perhaps I was coming down with a cold, or drank too much the night before, or had a bad reaction to this or that. I could somehow justify it. Additionally, the slow onset allowed me time to get used to things and accomodate. I got used to almost everything. I used to think it was totally normal to have a constant sinus infection, horrible stomach pain, and shifting joint pain. Not until the symptoms made me incapable of functioning in 2008 did I realize that I had a really serious problem.

I have picked more ticks off myself than I care to count. As a child, I spent every summer in the Northwoods of Wisconsin. Ticks were commonplace, we'd find them partially embedded and pick them off like it was no big deal, making morbid games of smashing their bodies with hammers on the cabin steps. We walked outside barefoot, played in the woods, and lay in the flattened deer beds we would find in the brush, pretending to be fawns. I went to rustic summer camps, sleeping in tents and playing in tall grass. I was a healthy, active, high-energy, creative kid, full of ideas and projects.

After returning from summer camp when I was 8, something changed. I came down with what the doctors prescribed as mononucleosis, downing me for a couple months.  I started having severe neck and back pain, missing school. Next, severe knee pain and swelling developed, forcing me to quit the soccer team. My once mild seasonal allergies began to flare, and I suffered intense sinus infections and colds. My ears rang. My right tonsil became consistently inflamed (it has been swollen persistently ever since). I started developing sensitivites to fragrances and chemicals, which only became worse with age. 

In middle school, continuing knee pain forced me to begin physical therapy. That same year, at the age of 13, I threw out my back getting out of the shower. I developed depression and anxiety, above and beyond the expected teen anst. In high school, I developed severe acne, eczema, and had troubled digestion. I carried around a bottle of Maalox constantly, and suffered from cramps. In college I started noticing occasional dyslexic issues my freshman year, and continued to suffer with recurring bouts of depression and anxiety. I started developing food allergies, and frequently got rashes around my eyes, mouth, and neck. There were times I couldn't eat without severe stomach and intestinal pain, had frequent diarrhea, visiting the emergency room for abdominal discomfort (they found nothing). I developed an epic ear infection that lasted 1 month and left me with increased ringing in my ears and constant ear pain, and regularly had sinus infections that would last for months on end. While studying abroad, I became so ill I nearly passed out on a bus in Italy. That "cold" lasted for three months, and then I got the flu. 

All of this makes it sound like my childhood and college life was awful. It wasn't - it was quite the opposite, actually. I always excelled in classes, graduating magna cum laude in college and being inducted to Phi Beta Kappa. I had a loving relationship and a busy social life, despite my struggles with anxiety and depression. I participated in lots of college extracurriculars and had a great job with the art department. I learned to live with all of these symptoms. They weren't debilitating, I just kept on going, adapting, pushing through. 

After college, all these symptoms continued to amplify. I suffered such severe back pain in 2004 and 2005 that I was going to a chiropractor upwards of three times a week and was in constant pain. I thought that diet and exercise would help; I started eating meat again and began working out. I lost weight and my pain was better, and I managed to complete two triathlons, working through all those symptoms. 

In retrospect, I believe I was infected with Lyme as an 8 year old, growing up as the bacteria grew in me.

In 2006 I believe I was reinfected; I developed a large rash on my leg after a weekend at a cabin. I never saw a tick, but my crazy rash continued to grow and become incredibly painful. Concurrently, I felt flu-like and achy, feverish, achy. I saw three doctors, who prescribed me countless creams and discounted me other symptoms. The last doctor I saw told me I had developed a spontaneous cellulitis infection, she gave me steroids, and eventually, the rash went away.

Even though the rash was gone, other things began to happen.  My body pain increased, the depression reared its dark head. I started acting out in uncharacteristic ways, behaving irratically and losing site of the consequences of some of my actions. I became obsessive, going to the gym constantly and counting my calories and fat grams and journaling food. I was tired and fatiuged, and was uncharacteristically spacy and forgetful. I  felt angry toward my friends, experiencing jealousy and frustration over even small things. I started taking naps before going out at night. My digestive pain was unbearable, I frequently felt flu-like, and suffered terrible headaches. My vision went haywire and I saw floaters constantly. I had frequent diarrhea, which sometimes forced me to go to the bathroom 3-4 times per hour. I suffered chronic bacterial vaginitis. I had numbness in my feet and toes, and my heart started palpitating.  I noticed I was losing dexterity, and stopped playing accordion and viola because I was having a hard time getting my fingers to work the way they should. At times, it was even hard to write my name - as an artist, this was a marked, scary thing. My balance was bad, I became sensitive to light, and my chemical sensitivities shot through the roof. My food allergy reactions were worse, and I was constantly swelling and getting rashes.

My once-consistent menstrual cycle became irregular, and my period stopped entirely in March of 2008. In April of that year, I started losing weight rapidly, even though by that time, I had stopped going to gym entirely. My limbs felt heavy and I felt weak; going up stairs felt like I was climbing a mountain. Over the next 5 months, I lost about 60 pounds. I was literally starving; my body had stopped absorbing nutrients.

I couldn't function. I couldn't adapt. I was terrified.

I made countless trips to my GP, desperate for help. Because all my bloodwork, endoscopies, CT scans, and general exams were all relatively unremarkable, she told me I was healthy and that I needed to calm down and stop worrying so much. She told me I could take an anti-depressant if I wanted, and that I should drink less caffeine. She actually congratulated me on finally shedding the extra weight (did she not see my jutting collarbones?). She told me my chronic bacterial vaginitis was just the way my body was, and that I should wear more cotton underwear. She told me my diarrhea was because I used to run a lot and had a case of "runner's diarrhea".  She put me on a heartburn medication and told me that would clear up my digestive pain. I left her office feeling crushed, heartbroken, and absolutely helpless. 

Needless to say, I never went back to her office again. 

I started trying to take matters in to my own hands. I changed my diet - severely, suddenly, and obsessively. I started reading and researching, grasping for answers in every direction. There were days I was so tired and in pain I could hardly go to work, but I did, because I didn't know any other option. My limbs felt heavy, my brain wasn't functioning properly, and I felt like I was dead and completely empty inside. Even in the dead of summer, I was freezing cold.

One day I was driving home from the co-op, a head of romaine lettuce in my passenger seat to eat for dinner, feeling completely distracted and totally spaced out, and driving too fast. I rear-ended the car in front of me, going around 30 mph. While both the other driver and I were relatively uninjured physically, I was hysterical and felt like my life was in shambles.  My ex-girlfriend picked me up from the accident, and helped me realize that I needed support. That accident was the best thing that ever could have happened - it opened my eyes to how scary and painful my life had become. 

I started seeing a naturopath and an acupuncturist, and my life began to change.  They listened to me, believed everything I said I felt inside, and showed sincere care and dedication to helping me uncover what was going on. 

My care providers and I worked to heal my gut, deal with my Candida overgrowth, address my food allergies, and support my immune system. My digestion improved and I started gaining back weight. But I still suffered so many symptoms; my pain became searingly bad, and I felt like someone was blowing a balloon up inside my head. I became even spacier, leaving things everywhere, forgetting words, and performing badly at work. I actually started something on fire in the work kitchen, nearly setting off smoke detectors in a commerical photo studio full of photo equipment.

Clearly, something else going on. My cousin had been recently diagnosed with Lyme Disease after 15 years of mysterious health issues, and she started encouraging me to get tested.  I was so resistant to getting that test done; over and over I said, "I don't have Lyme!" to my family. But the more I read about Lyme, I saw a picture of myself.

When I approached my new GP about getting a Lyme Disease test, she flat out refused to test me. She told me my joint pain wasn't "bad enough", and she couldn't get over the fact that I never saw a tick, or that my rash years prior didn't look like a bullseye. My naturopath was more supportive, and she arranged to get me tested through IGenex.  On November 2, 2009 I got my test results: I have Lyme Disease. I started seeing a new naturopath and Dr. Bernard Raxlen, a well known LLMD. I started a whole new batch of pills, sometimes around 40 per day. I presently take maximum doses of three oral antibiotics (Zithromax, Omnicef, Minocin), as well a slew of other pharmaceutical and botanical medicines and nutritional supplements and probiotics.  Over the last year, I've had massive ups and downs.  At first, I felt awful. I experience bad Herxheimer reactions, acute anxiety attacks, night sweats, nightmares, non-stop chills, and fevers. I was dizzy and lightheaded and kept running in to stuff.

After 21 days on antibiotics, the length of treatment suggested by the IDSA, I wrote this blog post. One thing is certain: I was not "cured" after 21 days. I am still on antibiotics, and will be for an indefinite amount of time, as are many of the other brave individuals in the Lyme Disease community.

Slowly, my body has regulated. I have worked hard to support my lymphatic system and kept with my regimen. And slowly but surely, I am noticing improvements. My friends and loved ones have noted how much better I seem. My doctor and naturopath are pleased with my progress. Over a year after diagnosis, I feel like I am starting to get my life back.  

My journey isn't over. I tried reducing my dose a few months ago and was met with a flare up in symptoms that left me calling in sick to work and spending days in my rocking chair. Now on a full dose again, I have indefinitely postponed my plans to go to acupuncture school in Portland, and am focusing on completing my personal healing journey. I don't know how much longer I need to do this; my symptoms and test results will determine when the time is right. This unknown factor bothers me, I hate not knowing "when" I'll be "better". So I try to live in the now, and appreciate all the blessings I have.  I'm a Lyme warrior, and I will get through this. I feel fortunate everyday for whatever stroke of luck has allowed me to heal in the ways that I have. 

Where's the Proof?

There is no proof more powerful than personal experience.  I don't need numbers or test results to show me how things I have gotten better. You've read my story, and here's how things have improved since starting long-term treatment. 

  • My massive brain-fog has diminished, my memory has improved, and I no longer feel totally spaced out.
  • My depression and anxiety has improved.
  • I no longer feel a sense of de-personalization, and am more grounded, self-reflective, and self-aware.
  • My energy has improved, and I am able to work a full day, have a social life, and do hobbies without feeling completely and totally exhausted. I don't have to take breaks going up the stairs anymore. 
  • I'm able to complete my physical therapy exercises well and am slowly building back up strength. 
  • My blood sugar has stabilized and I no longer suffer severe hypoglycemia.
  • My heart palpitations have decreased and are almost completely gone. 
  • I no longer have tingling, numb toes and feet. I couldn't really feel my toes for about 1 1/2 years, and they bothered me for years before that. 
  • The severe pain on the bottoms of my feet has improved, and I don't experience it most days.
  • The constant searing, shifting joint pain has diminished to occassional pain. It's not gone, but it's better, and that's a victory.
  • The constant, pounding headache has lessened to a constant pressure. It's not gone, but it is better.
  • My hormone levels are finally regulating, and after 2 1/2 years of Lyme-induced amennorrhea, my menstrual cycle victoriously returned 3 months ago.  I have now had three healthy, regular cycles! 
  • I no longer see floaters constantly in my vision. They rarely happen now, only during a flare up, or when I've done too much with too little rest.
  • The constant ear ringing and tinitus I've had since childhood has dimished to occassional rings.
  • My temperature has become more regulated, and I am not freezing cold as often as I used to be.  This is the first winter in 3 years when I haven't been completely and totally miserable.
  • Despite taking massive amounts of antibiotics, my digestion has actually improved. 

Would I have reached this point without long-term antibiotics, botanical medicines, and Lyme-fighting homeopathics? I don't think so. Before I started treatment, I was doing everything "right" to be a "healthy" person. I ate an organic, whole foods diet, took a boatload of supplements and tinctures, had a wonderful support system, tried my best to incorporate gentle exercise and stretching, and received regular care from a chiropractor, a naturopath, and an acupuncturist to address a multitude of issues. Despite all this, I was still sick, still suffering increasingly severe symptoms, and wasn't getting a whole lot better. An average indivudal would have felt fucking fantastic with my lifestyle, and I felt miserable. It wasn't until I was diagnosed and started treatment with Dr. Raxlen and Dr. Vilensky that my health finally started turning the corner.

On that note, keep in mind that I do not make the cut for CDC. According to their ultra-conservative diagnosis guidelines, I do not have Lyme Disease and my test results are borderline negative.  Additionally, according to the "research" presented in the article, the symptoms I had belong to an illness that doesn't exist, and the treatment I've used with great success is "dangerous" and "unproven".

Stories from the Lyme Community

In an effort to tell the true story of Lyme, many of us in the blogging community are sharing our stores and voices.  Please see these blogger's posts, and read their stories. We all have had different journeys, but we all share in the same fight. 

I speak on behalf of many of us in the blogging community by saying that we feel the best way to discuss this issue is coming from a rational place, not one of outright rage and irrational communication.  I urge your to share your stories, leave comments on the Tribune's articles, or email the article authors directly (the email addresses are available at the end of the article). If you have written a response to this article, please leave a link in the comments section of this post.

In health, Kim

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