Sometimes the Diagnosis is Half the Battle

It is universally agreed upon that the sooner a diagnosis can be made from the time of the initial infection with Lyme disease, the better the chance of recovery. Accurately diagnosing the disease is not always an easy task since it manifests itself in a variety of ways. Research done by the International Lyme and Associated Diseases Society (ILADS) indicates that only 50-60% of patients recall a tick bite. Deer ticks are tiny and not easy to spot even when they are attached to you, and their bites are painless. The only distinctive sign unique to Lyme disease, the Erythema Migrans (EM) rash, which looks like a bullseye, is reported in only 35-60% of patients. Joint swelling typically, occurs in only 20-30% of patients. ILADS also state that given the prevalent use of over-the-counter anti-inflammatory medications such as Ibuprofen, the joint inflammation is often masked. 

The Lyme disease bacterium is difficult to find in laboratory tests of body tissues or fluids, therefore most health care providers look for evidence of antibodies against B. burgdorferi in the blood to confirm the bacterium’s role as the cause of symptoms. Take a look at some facts from various websites about Lyme disease testing:

• In the first few weeks following infection, antibody tests are not reliable because your immune system has not produced enough antibodies to be detected.
• Antibiotics given early during infection also may prevent antibodies from reaching detectable levels, even though Lyme disease bacteria are causing your symptoms.
• It may take up to 2 months after becoming infected before antibodies can be detected in a blood test. Once formed, antibodies usually stay in your system for many years, even after successful treatment of the disease. Finding antibodies to the Lyme disease bacteria does not tell whether you were infected recently or sometime in the past.
•  We have no way of proving that Lyme disease has been fully treated. Antibody tests can remain positive for many months after the organisms have been eradicated. Clinical symptoms may persist because the bacteria live in the small blood vessels that supply nerves and other tissues. If those blood vessels are blocked by the inflammation, patients can continue to experience symptoms long after the last organism has died.
• "The commercial testing that's available is, in a word, terrible. It has coin toss sensitivity, which means if you flip a coin you get the same results as doing a commercial test," says Dr. Raphael Stricker, former ILADS president, who treats Lyme patients at his clinic in San Francisco.

The two most popular tests used to detect Lyme infections; Western Blot analysis and Enzyme-linked immunosorbent assay (ELISA) both test for antibodies and are notoriously inaccurate. They often fail to indicate Lyme when it is present in the body, with up to one third of cases of the infection being missed due to a high rate of “false negative” results. Patients can take a Lyme disease test one week and get a positive result, and take the same test two weeks later and result in a negative. The confusion is due to the nature of the Lyme bacteria, which is highly adaptive and bent on survival within a threatening environment. If a person does not have a diagnosed EM rash, there is a good possibility that the Lyme diagnosis could be missed. Consequently, those patients can become chronically ill with Lyme disease.

This muddled picture has one more layer; co-infections. In my last post I mentioned that there are more than a dozen tick borne diseases recognized in the United States. The standard Lyme disease tests only look for evidence of antibodies against B. burgdorferi. The tests for other tick borne illnesses must specifically be requested by a physician based upon the symptoms their patients are exhibiting. 

In my last two posts, I took a step back from my personal experience and laid out facts that anybody doing a search about Lyme disease, co-infections and testing could come across. As you can see, there is a lot of controversy surrounding Lyme disease and treatment. In an earlier post titled “A Clean Bill of Health” I was told I was healthy since my tests came back negative, even though I was 100% sure I had Lyme disease (again) and had text book symptoms. No further blood work was ordered and I couldn’t even get the physician to call me back for further discussion. I had to seek out a Lyme literate doctor (LLMD) in order to move forward and get treated. Talk about opening up another can of controversy. More on that next time! 

Lyme Disease at-a-Glance

There is no easy way to explain Lyme disease which is why I haven’t done it yet. 

What is Lyme Disease? 

Lyme disease (LD) is an infection caused by Borrelia burgdorferi, a type of bacterium called a spirochete (pronounced spy-ro-keet) that is carried by the black-legged tick (deer tick). The ticks pick up the bacteria when they bite mice or deer that are infected with LD. An infected tick can transmit the spirochete to the humans and animals it bites. Untreated, the bacterium travels through the bloodstream, establishes itself in various body tissues, and can cause a number of symptoms, some of which are severe. Lyme disease manifests itself as a multisystem inflammatory disease that affects the skin in its early, localized stage, and spreads to the joints and nervous system in its later, disseminated stages. 

Treatment: The key to a successful treatment is early detection.

·         Oral antibiotics are the standard treatment for early-stage Lyme disease. Depending on age and other factors a 14-21 day course of Doxycycline, Amoxicillin or Cefuroxime is usually recommended. Some studies suggest that 10-14 days of treatment are equally effective.

·         If the disease involves the central nervous system, the doctor may recommend treatment with an intravenous antibiotic for 14 to 28 days.

·         After treatment, a small number of people still experience some symptoms, such as muscle aches and fatigue. The cause of these continuing symptoms is unknown, and treating with more antibiotics doesn't help.

What is Chronic Lyme Disease? 

There’s a deep division in the medical community over whether there is such a thing as “chronic Lyme disease,” and there’s ongoing debate over how to help people who suffer from long-term effects of Lyme.

CDC website: Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2-4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme disease Syndrome" (PTLDS).The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection.

International Lyme and Associated Disease Society website: Chronic Lyme disease patients may face a long hard fight to wellness. People with chronic Lyme can have many debilitating symptoms, including severe fatigue, anxiety, headaches, and joint pain. Without proper treatment, chronic Lyme patients have a poorer quality of life than patients with diabetes or a heart condition. A significant number of people who contract Lyme disease are misdiagnosed during the early stages, leading to a chronic form of the disease which can prove even more difficult to diagnose and treat. Lyme disease is often referred to as the "great imitator" because it mimics other conditions, often causing patients to suffer a complicated maze of doctors in search of appropriate treatment.

NIH website: The term “chronic Lyme disease” (CLD) is very confusing, as it has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, in many occasions it has been used to describe symptoms in people who have no evidence of a current or past infection with B. burgdorferi. In other cases, “CLD” is used in patients who have non-specific symptoms (like fatigue and pain) after treatment for Lyme disease, but who have no evidence of active infection with B. burgdorferi. Physicians sometimes describe these patients as having post-Lyme disease syndrome (PLDS).

Treatment: The treatment for chronic Lyme disease is just as controversial as the diagnosis. It varies from patient-to-patient and I will go more in-depth about my treatment as this story continues to unfold. 

What are Co-infections?

Scientists recognize more than a dozen tickborne diseases in the United States. One tick may carry more than one disease and sometimes people get more than one co-infection from the bite of a single tick. Coinfection generally results in more severe illness, more symptoms, and a longer recovery.  Many Lyme patients are also infected with co-infections.

Treatment: The treatments vary since not all co-infections respond to the same antibiotics. In some cases co-infections are not diagnosed or treated.

This is just the tip of the iceberg in terms of what you may find while researching Lyme disease. If you are reading this and thinking that part of the picture is still missing, you are correct. I am saving the discussion about Lyme disease testing for the next post because it is just as convoluted as trying to define Lyme disease and deserves an equal amount of attention.

Ready.Set.Detox.

If success is measured by gastrointestinal distress then my "farewell to inflammatory food tour" was a major accomplishment. By the time the "Recipe for Repair" cookbook (mentioned in previous post) arrived in the mail, I was eager to read it and get started on my new diet.

Book Summary: In addition to the recipes, the book outlines how the Lyme inflammation diet can control inflammation by aiding in reduction of toxins in the body which help your enzymes stay in balance. Enzymes are a natural therapy for treating chronic inflammation; they help break down your food into absorbable components. We produce hundreds of different enzymes in our bodies with specific purposes and functions. It is essential that we ingest additional enzymes in our foods, but the best sources of enzymes are typically over processed or overcooked causing them to lose large amounts of their enzyme content. Chronic illness increases the body's requirements for enzymes. The combination of illness and an inadequate diet causes chronic inflammation. 

The diet is broken into four phases. There is a list of foods allowed in each phase which include beverages, fruits, nuts and seeds, vegetables, grains, protein, herbs and spices, fats and sweeteners. Phase one is a weeklong detox which eliminates the most common food contributors to chronic inflammation. Each phase that follows builds on the previous one introducing new items into each food group so you can see how your body reacts. The higher the phase, the more likely some of the foods will cause an inflammatory response in your body. Once you make it to Phase 4 you have a good idea of what you need to avoid to maintain a healthy diet with little to no symptoms of chronic inflammation. 

My Detox: On the last day of my food tour I ate a burrito for lunch, a hamburger for dinner, all the M&M's I could fit into my mouth and washed it all down with Pepsi. The next day I started Phase 1. In addition to adjusting to the medication I had recently started, my body was stressed out from my gluttonous activity. For four days as my body went through processed food, meat, gluten, dairy and caffeine withdrawal my brain fog got worse, I had a headache that made my eye sockets hurt and … well to be honest, I am not even sure I remember most of what happened during those first four days. I do know I made coconut milk, cooked a lot of food, made a lot of errors and finally got a firm grip on fractions while altering recipes. 

I started the great diet experiment in early December 2011 and am still going strong. I have yet to make it out of Phase 3 since a lot of the foods permitted in that phase are not agreeing with me in my current state. I hope that once the Lyme disease goes into remission that I will have an easier time with food. So far I’ve found that I have sensitivities to dairy, gluten, soy, red meat, and tomatoes. I am not going to lie, when dealing with fatigue and exhaustion from the Lyme disease, I get extra tired of having to cook and be so careful about what I eat. There have been a few notable occasions where I have fallen off the clean eating wagon and the results fully support everything my doctor, the cookbook and Google searches have taught me. 

Exhibit A: 

Oktoberfest celebrations are usually a great way to celebrate fall, beer and German food. On Saturday, October 6th I was thoroughly enjoying my Sober Oktoberfest experience in Shirlington, VA when I randomly decided to eat a pretzel that was bigger than my face.  

Result: I was glutenized. Within in an hour of eating the pretzel I had an intense headache. The headache didn't stop me from sitting down on my friends couch to watch a DVR'd episode of The Real Housewives of New Jersey, followed by a two hour nap on the couch. I woke up with the same headache, brain fog and no recollection of lying down. It took another half an hour for me to be able to sit up and focus. I eventually went home thinking I was going to have a hard time sleeping because of my mid-day nap and promptly fell asleep for 15 hours. I woke up with less brain fog, the same headache and extra achy joints. It took me about two days to feel "normal" again. These days “normal” is defined as having a clear mind and the usual amount of ache in my joints from the Lyme disease minus the food related flare ups.

If I had eaten one of the smaller sized pretzels they were selling at Oktoberfest, would the same thing have happened? Yes, but on a much smaller scale. If I eat bread I get tired and achy and wake up the next day with extra joint pain that usually disappears around mid-day. Like I mentioned above, gluten and I are not on good terms. No more gluten experiments for me! 

Quitting My Pack-A-Day Habit

Once upon a time in a life that now seems far, far away, I would tear into a king size package of peanut M&M’s and enjoy the sugary goodness on a daily basis. I loved eating peanut M&M’s. I am not ashamed to admit that people often bribed me with M&M's as I was always willing to eat them and do whatever they were suggesting; whether it was ethical or not.

What? Were you expecting me to address the positive Lyme test from 2009 that I found out about in 2011 after I had just tested negative for Lyme disease and was told I was healthy? Are you feeling a bit anxious thinking about all the times you have gone to the doctor for blood work and was told "no news is good news"? Are you wondering how peanut M&M's fit into this equation? The equation is complicated. There are a lot of moving parts. I don't know about you guys, but math was never my strong point. It always left me in a state of confusion.

Confusion. Johnny Depp once said "I pretty much try to stay in a constant state of confusion just because of the expression it leaves on my face". What does Johnny Depp have to do with Lyme disease? As far as I know, nothing. Confused? Good! This is what it's like to be a Lyme disease patient.

Upon returning to the doctor in December to review my blood work and adjust my medication a diet bombshell was dropped on me. Diet is a part of the complicated equation mentioned above and is sometimes completely overlooked during treatment. My doctor strongly recommended cutting out food and drink that cause inflammatory response when consumed since Lyme disease is inflammatory and certain foods add more fuel to the fire. I was told to stay away from red meat, dairy/butter, processed sugar, refined carbohydrates, coffee and alcohol.  Here is a snippet of my inner monologue as this list was being recited to me:

Oh gosh. I love hamburgers. My mom always told me I was going to turn into one because I ate so many. Oh geez dairy? Ice cream... What am I going to do over the summer when I can't eat ice cream every day? Burritos! Who the heck wants to eat a burrito without cheese? Oh maaaan... processed sugar. I love M&M's and Pepsi and cookies and cakes,and oh my... is bread a refined carbohydrate? Oh well, good thing I never drank coffee, I won't miss that. Goodbye whiskey. I hope we meet again soon. You are the nectar of the Gods. 

After I left the doctor I had a lot of information to process. The diet was only a small portion of what we had discussed but has since turned in to something much bigger. It wasn't until I was half way home that it dawned on me that I was going to have to start cooking, and I was going to need help because on average I spent zero percent of my time in the kitchen cooking. I was known for my nearly empty fridge that always had condiments and nail polish in it and my amazing ability to microwave frozen pizza. (Just in case you are wondering, I like to keep my nail polish in the fridge so it doesn't get sticky in the heat). After an extensive cooking related Internet search, I came across "Recipes for Repair - A Lyme Disease Cookbook" by Gail Piazza and Laura Piazza. As I waited for the cookbook to arrive in the mail I convinced my local friends to participate in a multi-day "farewell to inflammatory food tour", which took us through all four quadrants of Washington, DC and into parts of Virginia. It was a glorious affair and in hindsight a very dumb thing for me to do. Why do I say that? I will explain in great detail next time. For now, I would like to end where I began.

I have yet to replace the void that eliminating peanut M&M’s from my diet has left in my stomach. Like every great love affair that comes to an end, it is much better to move on then to dwell on what could have been. I am not going to lie, from time-to-time I think about peanut M&M's. Have I been peanut M&M free since December of 2011? Almost, but not quite. Sometimes when you feel like something is still missing in your life you may get the urge to pick up the phone and dial that ex-great love affair, only to immediately regret it because they aren't as great as you remember. Same thing applies to the peanut M&M's.