Lyme Disease Then & Now...an Update on Me

The question I get most often in emails and various communications from those that follow this blog is, "How are you doing now?" Many people write me inquiring about a specific doctor, clinic or protocol I have personally followed for treatment, wondering if it CURED me. A lot of people mention in their communications that they are researching these different options, but don't want to waste their time/money/energy on something if it doesn't work.

Each of these messages evokes very mixed emotions in me. First, it feels a little overwhelming that anyone would base any portion of such a serious and personal decision on my experience. Second, I feel sorry for people who are so desperately in search of answers but seem to be asking the wrong questions - I've been there myself. Third, I feel badly that so many people actually think they can be CURED. There is so much that I want to say about each of these thoughts, that I'm going to try to break it down here.

To start out with, I want to scream from the rooftops that LYME DISEASE AFFECTS EACH OF US DIFFERENTLY!! No two cases are alike. Even if you and I both have Lyme disease, there are so many factors that determine what will or won't work for us. Our immune systems, genetics, co-infections, the time that we've gone undiagnosed, even factors that are far more difficult to measure such as spirituality, family support and a belief that you can get better, will affect how any treatment works or doesn't work for you. This is something that anyone battling Lyme disease needs to understand and internalize. One of the reasons that we're dealing with the mess that we're dealing with here in the Lyme lands, is that this illness looks different on almost everyone.

YES. There are commonalities. Similar symptoms in the short term & long term of the illness. But if you got 50 patients, all suffering from Lyme, in one room and started comparing symptoms, they would all be different. YES. Headaches, muscle weakness, pain, fatigue, short term memory loss, joint pain and neurological symptoms would probably dominate the conversation...but then you would start discussing stomach problems, abdominal pain, mastoiditis, hearing problems, vision problems, skin problems, blood issues, hormonal imbalances, foot pain. I could keep listing, but most people reading this are well versed in the fact that Lyme can attack any body system, and can masquerade as almost any illness or disease out there. Because the disease (or infection) affects each of us so uniquely, there will not be any one "all-inclusive" answer for each of us individually. It's one of the major reasons its so difficult to get an accurate and timely diagnosis, and it's one of the major difficulties in finding the right treatment modality.

I started this blog in January 2009 when I had so many questions, and precious few answers. I seemed to sense however, that I was at the beginning of a very long journey and I wanted to document it. I'm glad that I did, as it has provided me with perspective and a record of where I've come from. That has helped me on more than one occasion of feeling very discouraged with this seemingly un-ending path and all of its hills, pot holes and setbacks. The blog has taken on a life of its own as more and more people have read about my experiences. It makes me happy to be able to share what I have learned for myself, in my journey with Lyme. I'm glad that perhaps I can offer an additional piece in someone else's search for help and hope. But I cannot offer answers for anybody else. All I can do is hope to point people in a few directions that perhaps they have not looked into. Each of us has to thoroughly research our options and weigh them against our own personal experience and situation. I think we all know this already, but I think it bears repeating.

Today, almost twelve years after contracting Lyme disease, and a few months more than six years into actively treating it, I think I'm in remission. I AM NOT, AND HAVE NEVER CLAIMED TO BE, CURED. At present, there is NO CURE for Lyme disease...unless you've been lucky enough to have a doctor prescribe 21 days of doxycycline when you showed up at his office with a bullseye rash. Since you're reading this blog, that's probably not the case for you. It wasn't the case for me. So for those of us that have been sick for years, I hate to say it, but it's just the truth, to the best of my knowledge, there's currently NO CURE for chronic Lyme disease. Not for me, not for you, not for anyone. There are effective treatments. There are effective ways to manage it. Some people do extremely well on various treatments that have worked for their own particular brand of Lyme.  Others, in spite of their best efforts, continuously struggle. Theoretically, even if you're lucky enough to be a-symptomatic, there is always a chance of it coming back, because of the nature of the bacteria and its ability to adapt and hide in the body's deep tissues. The goal is to get things into remission...so the immune system is in control once again. This means that if at any point, the immune system loses control, (read: you get the flu, too little sleep or too much stress) you have the potential of dealing with a flare of symptoms, or a full-blown relapse.

Over the last six years, we have spent four years actively treating this illness. Treatment has included combination antibiotic therapy, nutritional supplements, injections and intravenous infusions including hydrogen peroxide, hydrachloric acid and massive dose vitamin C. Each of the treatments that we have done has helped with abating my Lyme disease symptoms. Each has involved discomfort and side-effects of some sort, including the well-know herxheimer reaction. None have been covered by insurance, and each is extremely costly. I would not change anything that my husband and I have done on our path to try to manage my illness. I am thrilled with the progress we have made. But I am not CURED. As I stated above, I think I AM in remission.

I recognize that I will never be the person I was before Lyme disease, and I can't expect my body to function the way it did before Lyme disease. Translation: I have to take extra-special care of myself. This is a really hard thing for a MOMMY to remember, let alone do. But I try to focus on drinking plenty of water, getting as much rest as possible, and taking quality nutritional supplements every single day. I personally believe that spirituality, meditation and prayer help immensely in the healing process, and I try to include these important elements in my daily life. Additionally, I utilize other alternative healing modalities such as a personalized hypno-therapy session (recorded as I worked with Dr. H at West Clinic) targeting immune function (don't knock it 'til ya try it) that I have on CD and try to listen to at night as I go to sleep. I have been doing this for over a year now. I also use the "cupping" method with DoTerra Lemongrass essential oil on a daily basis to help improve memory and reduce brain fog. I realize I may have lost a few of you with these last couple sentences...but having dealt with so many "closed minds" in the world of Lyme disease, we have become fairly open minded in what we're willing to try. And to me, the proof is in the pudding. I don't care if it can't be scientifically quantified or explained. If I try something and it seems to help me feel better, I'm open to utilizing that option. Why would you not? Even if it is placebo...and I'm inclined to believe that most of this stuff is NOT placebo. If it were possible to "think" myself well, I dang well would have done it a long time ago...I don't know anyone who would love to be my old, healthy self again more than me! Honestly, I really don't care what anyone else thinks anyway. All I'm worried about is how I feel and how I can function with the best quality of life possible.

For our purposes here today, I'd like to explain my personal "definition" of remission. You might define it differently, so here's how I define it: I still deal with (on an almost daily basis) fatigue, muscle aches & joint pain of varying degrees, although substantially less than before treatment! I still have problems with my short term memory, although these are much improved unless I am overly tired, stressed or otherwise sick. I still often don't feel like I have enough energy to get out of the house, and there are days where I feel like I just need to stay in bed. Because I live in reality, and I have two young children and a very busy husband working on a DVM, I rarely GET to stay in bed - but I have days where I wish I could. In spite of this, I also have a very good quality of life.

For the most part, I can do the things that I want to do on a daily basis without much thought for how we should be compensating for Lyme disease. Occasionally I do have "flares" of my classic Lyme disease symptoms, and when that happens I have started to take it as my body telling me its struggling, and it's time to be kind to myself. We manage flares by doubling and tripling up on my nutritional stuff, (I use a fabulous supplement that I am able to double and triple up on -- don't do that without making sure that its safe!) trying to get as much rest as possible, drinking lots of water and trying to purposely think positive thoughts! So far, we have done really well. I haven't had a treatment since late April of last year - so it's been an entire year that I've been off treatment, and I'm feeling consistently better on a daily basis than I have in years. Literally. But having said all of this, my husband and I are fully aware, and have planned for, my future need for additional and continuing  treatment in the event of another major relapse. For now, I am very pleased with where I'm at, and I feel lucky to be here.

Yolanda Foster Speaks Out About Lyme Disease

Yolanda Foster, wife of Grammy-award winning songwriter and producer David Foster, and cast member of Bravo TV's Real Housewives of Beverly Hills was honored on April 9th with a Star Light Award from the Lyme Research Alliance at their annual Time for Lyme Gala, raising money for Lyme Disease research. Foster was honored with the award because she has spoken openly about her struggles with Lyme, her diagnosis and strenuous treatment regimen. You can read more about the awards gala here.

In her acceptance speech at the gala, Yolanda recounted her experience with Lyme in her usual and refreshing frankness, stating that Lyme Disease led "to some of the darkest days of my life."

You can also watch as Yolanda briefly discusses her journey with Lyme Disease with host Andy Cohen on Bravo TV's Watch What Happens Live. Yolanda has been very public about her fight with Lyme since December 2012. You can read more about her and other celebrities in a previous post, Celebrities Get Lyme Disease, Too.

ELISA & Western Blot Tests for Dummies

Testing is such a difficult aspect of getting a proper diagnosis for Lyme Disease. I was diagnosed (and properly tested) by an LLMD over four years ago and still haven't fully figured out the tests, how they work and what exactly the problems are. Obviously I understand everything well enough to be able to logically explain the problems with other non-medical types, but if you ask me specific questions, well, I probably wouldn't have specific answers. So I'm on a mission to better understand these tests.

I am a member of an online Lyme support group, and recently discovered a post that another member did to help people to understand the ELISA & Western Blot tests a bit better. I was very grateful for this information, and delighted to find in the comments that it was ok to spread the information around. So, I'm sharing it here!

"An ELISA test is a much weaker test than a Western Blot. ELISA looks at a single antigen (bacterial protein) to say if a patient has Lyme or not. In October 2010 a University of Medicine and Dentistry of New Jersey (UMDNJ) published a study saying that there are 13 strains of Borrelia (Lyme) Here is the story in Discover Magazine.  The current ELISA tests are based on just one strain, B-31. The ELISA test uses a single antigen from this strain as an attachment point for a patient's antibodies. Clearly this recent discovery of many more strains could mean that the single antigen of the ELISA test is not shared by all the strains. This might explain why the ELISA test often misses cases of Lyme. Some companies even use a synthetic version of the antigen.

ELISA is usually done because it is a cheaper test at about $75, while a Western Blot can run around $200 to check for early & late antibodies (IgM (~$100) and IgG (~$100))."

"The Western Blot test runs a patients sample through a gel with the use of an electric current. The patients antibodies are complexed (bound) to broken up bacterial parts in the sample. The electric current drags these bound pairs through the gel. The different weighted pairs end up in different places in the gel with the lighter pieces moving the farthest. These different places are represented as bands in the gel. The bands create a pattern and there are patterns that indicate if antibodies have been bounded to Lyme bacterial parts. This can indicate if Lyme is present. The advantage of the Western Blot over the ELISA test is that far more indicators are examined than the single antigen in ELISA. Perhaps the 13 strains will differ in a couple of particular antigens, but when you start looking at many antibody complexes it will become more difficult to miss Lyme's presence.

Think about comparing cars, with different models representing different strains. If you check for only one thing like GPS navigation to define the vehicle as a car, you will miss a lot of models that aren't equipped with that feature. This one feature test for determining if a thing is a car would be like using the single feature ELISA test. But suppose you start comparing a bunch of features like GPS navigation, steering wheel, 4 doors, fuel injection, foglights, and Air conditioning as defining a thing as a car. With a greater selection of features you will properly identify more things as cars. This is like using the Western Blot test which is looking at a broader scope in identifying Lyme's presence through antibody activity."

The band information I got from a number of websites. The International Lyme and Associated Diseases Society (ILADS) may use only a subset of those bands. However the idea of the band usage to identify Lyme's presence is the same. This is one of the webpages:    http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

 

The entire original post, along with comments, can be found here: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=108294;p=0 The comments are very good, and include good dialog, if you're interested.

Protect Yourself from Lyme with Repellent!

I LOVE being outside. In fact, being in the mountains, and hiking on trails winding through thick forests reminds me of what Heaven must be like. The sounds, the smells, the wildlife and the solitude. It truly is my happy place. I can't think of much better than exploring the wonderful forests of the Pacific Northwest. That was, at least, until I contracted Lyme Disease. Now, while I still love being outdoors, I'll admit that I have a bit of anxiety being in those beautiful forests, no matter where they are. I also feel that anxiety when I'm forced to walk through tall grasses, brush, weeds or dead leaves anywhere. That's because all of those things are favorite tick habitat, and in the last four years, I've learned a lot about, and become much more aware of, TICKS.

When I first met with my LLMD (Lyme Literate Medical Doctor) she told me that I should never go camping again. Huh? Lyme Disease has been terrible, and it's something that everyone should take seriously, understand and use precautions against. But I refuse to live my life in fear, and even though these things put you at much higher risk of Tick Borne Diseases, transmitted via tick bites, I will continue to participate in the things I love. But there are many things you can do to protect yourself, and I will be very careful about it.

The easiest thing you can do to avoid ticks is to use insect repellent with Deet. Repel Sportsman Max happens to be my favorite, (pictured below.) YES, I know that DEET can have it's own concerns, when used too frequently. But I'll gladly take my chances with those, than with a bout with Lyme Disease, that is, if I wasn't already battling it. :)

Insect repellant should be applied to any exposed areas of skin, or to thin clothing. I like to apply it to my first layer of clothing, paying special attention to your feet/ankles, hands/wrists/exposed arms, neck and hairline. I even apply it on my hair, and spray it on my hands so that I can rub it on my face. Depending on where you're at, you may not have to be so thorough, but if you're in the deep woods, you do need to be thorough! In addition to this, you can also purchase repellant that is designed to be applied to your clothing, gear and equipment as an additional deterrent for ticks, mosquitos, biting flies, spiders, etc. This repellent contains a chemical called permethrin, which is a stronger repellent than what should be applied to the skin. We use a gear spray that's also by Repel, (pictured below) and these two sprays can be purchased in the camping section of your local WalMart or other sporting goods store. Using repellent on gear such as tarps, tents, sleeping bags & packs will also help to insure that you don't bring home any unwelcome hitch-hikers when you return from your outdoors adventures. The spray should be applied and allowed to dry prior to packing for your trip. It goes without saying that this should be done in your yard or a well-ventilated garage.

There are many other things that you can do to protect yourself and your family. They include frequent tick checks during and after outdoor activities; wearing light-colored long sleeves & long pants; staying on trails, and away from underbrush, leaf litter or fallen logs; and upon returning home, throwing your clothes into the dryer for 15 minutes. Ticks are extremely heat sensitive, and this is enough to kill any that might be clinging to your clothing. A shower will also help you to find/identify/get rid of any ticks that might be hiding in hard-to-see places.

 

For more information, visit an older post, An Ounce of Prevention. You can also visit LymeDisease.org for additional information and tips on preventing Lyme Disease.

Babesia duncani

When I was first diagnosed and learning about Lyme Disease and all of it's co-infections four years ago, I had hardly any luck in doing an internet search for information on Babesia duncani, a less commonly seen strain of Babesia. I found a lot of articles full of technical medical jargon, but I was looking for something that the lay person could understand. Eventually, with the demands of long-term treatment, I gave up and haven't really thought much of Babesia duncani in the last four years.

Babesia is a protozoan infection of the red blood cells. It is a malaria-like infection, and in fact is so similar to malaria that it is hard to distinguish between the two under a microscope without proper training. The symptoms, appearance and actions under the microscope of Babesia duncani are very similar to those of Babesia Microti. Upon infection of a host, these little invaders cause lysis or rupture of the host's red blood cells. As the infection takes hold, the little parasites reproduce as quickly as possible and as red blood cell depletion increases, they actually begin to deprive their host of oxygen -- which causes extreme, debilitating fatigue among other possible symptoms.

The following list is from an article by Dr. James Schaller, Exciting News About Babesia:

Babesia Signs and Symptoms
"Babesiosis can cause many different signs and symptoms. Here are the most common that should raise suspicion:

	High fever to persistent low fever
	Slowed thinking
	Listlessness
	Decreased appetite
	Chills Sweats Headache Fatigue Muscle aches
	Joint aches/Pain Depression Anxiety/Panic
	Nausea Vomiting Cough
	Shortness of breath
	Air hunger or unsatisfying deep breaths
	Dark urine
	Enlarged liver (under your right rib cage)
	Enlarged spleen (under your left rib cage)
	Yellow hue on eyes, hands and skin (Jaundice)
	Enlarged lymph nodes (also in Lyme or Bartonella)
	Significant memory change
	Profound psychiatric illnesses
	Struggle organizing
	Daytime sleep urgency despite nighttime sleep
	Waves of generalized itching
	Balance problems with dizziness
	Severe chest wall pains
	Random stabbing pains
	Weight loss or gain Sensitivity to light
	Sleep in excess of 8-1/2 hours per day
	You have received blood from another person

Since Babesia lives within red blood cells, it can cause slugging of the red blood cells and make them slightly deformed. Injury and death can result from slugging blood vessels, lungs and kidneys."

With my recent relapse, I've found myself back in the mode of trying to learn everything I can about the many facets of this illness. Last week, as my husband and I were trying to research various physicians, clinics and treatment protocols, we dug out my file folder of test results from four years ago. My LLMD was extremely thorough in doing my labs, and I have copies of everything we did. As I was looking over them, I noticed for the first time, that there is a brief description given about each result, including information about the infection and how the test works.

Here is the information, word for word, provided by IGeneX Labs on my printed test results: "Babesia duncani, formerly WA-1, is a Babesia-like piroplasma associated with cases of Babesiosis in the Pacific Northwest. The first case of Babesiosis acquired by B duncani was in South-Central Washington State (Quick et al 1993, Ann Intern Med, 119:284).

When I read this, I about fell off my chair. I grew up in Portland, Oregon, where I learned from a young age to appreciate the beauty of the Pacific Northwest through fishing, hiking, camping, spelunking and backpacking. I absolutely loved being outdoors, we spent untold time in the woods, and I spent plenty of time out in nature in the State of Washington, too.

The reason that I was so floored by this information was because I was bitten by a tick in New England, during a late-summer 6-weeks-long trip. I had gotten a large, solid, red rash a few days after returning home, (I was told by the doctor that it looked like a spider bite or allergic reaction and he was not concerned about it,) and I can easily track all of my major symptoms and decline in physical health from that point. I had never considered that I could ever have contracted any sort of tick borne infection in the Pacific Northwest, I don't ever recall having a tick bite, and yet, there it was on my test results.

So that's when I began to really try to think of different things that had happened in my life prior to 2003. Strange rashes, possible tick exposure, really bad "flus" or other illnesses. To my surprise, as I specifically tried to recall these things, I remembered several times, when I was much less informed about TICK BORNE DISEASES (TBD,) where I had not only had tick exposure, but also strange rashes. Once, after backpacking in a beautiful place in South-Central Washington State called Siouxon Falls, near Amboy, Washington, we pulled three huge, ugly and fully engorged ticks off our dog, that had accompanied us on the excursion. A week or two later, (I'm not sure exactly how long it was since this happened in 1998) I got a strange, multi-lesion rash that was first diagnosed as chicken pox, then shingles...even though I had had the chicken pox as a little child and both doctors stated that it didn't really look like traditional CP or shingles. I also had similar rashes three times over a one year period while I was living in Coeur d'Alene, Idaho (just a stone's throw from the Washington State line) in 2002. Each time I would have a significant case of fever & chills, with the rashes appearing the following day.

In addition to Lyme Disease, there are MANY tick borne diseases that can cause significant problems all on their own. These include: Babesiosis, Erlichiosis, Anaplasmosis, Rocky Mountain Spotted Fever, Relapsing Fever, Tularemia, Bartonella, Q Fever, Tick Paralysis, Tick Borne Encephalitis and Colorado Tick Fever, among others. Each is transmitted by a tick bite, but many times, multiple infections are transmitted in one tick bite.

Together in any combination, these illnesses make the diagnosis and treatment of any single infection much more difficult. It is important to be extremely vigilant in photographing and reporting ANY rash or lesion to your doctor. I never took pictures of any of my rashes, and now I really wish I had. Make sure that you also record the date of the rash, any symptoms in the days leading up to or coinciding with the rash appearing, and any travel, outdoors excursions, yard work or known tick exposure (this is extremely important, and the doctor may not ask!) along with any other pertinent information.

Also check out: Babesia & Lyme Disease, a post from earlier this month.

New Study: Lyme Bacteria Doesn't Need Iron

This is actually information that a friend shared with me on facebook, and it was so interesting, that I had to share it here! So, a little disclaimer: I did NOT write this, and I am not taking credit for it.

The links provided at the bottom talk more in depth about the specific studies. Basically, this new research has shown that Borrelia Burgdoferi (the Lyme Disease bacteria) is now the ONLY KNOWN LIVING ORGANISM to exist without iron, a metal that all other life needs to make proteins and enzymes. This could potentially be a huge breakthrough and just goes to show how advanced and complex this pathogen is. The study was published on March 22, 2013 in the Journal of Biological Chemistry.

Credit: CDC/ Claudia Molins photo: Janice Haney Carr.

"All known organisms need iron to survive. All except one - Borrelia burgdorferi, the bacteria that causes Lyme disease, has evolved to use manganese instead.

 

For almost all organisms, iron is essential in processes like making new enzymes and other proteins. Perhaps the most obvious example is its role in haemoglobin, the oxygen-transporting protein found in the red blood cells of almost all vertebrates. Researchers knew that the bacteria B. burgdorferi did not need iron, but have now discovered that it requires high levels of manganese instead.

The bacteria's use of manganese rather than iron helps explain how it can evade the immune system. One of the immune system's responses against invaders is to lower the amount of iron in the blood. This starves the pathogen of the iron it needs (as well as making us feel terrible) and works against almost every pathogen. But if the invader doesn't need iron, like B. burgdorferi, this attack is quite ineffective.

Antibiotics are currently the only treatment for Lyme disease. Penicillin is generally effective if Lyme disease is caught early, but it works by attacking a bacterium's cell walls - something certain forms of Borrelia don't have. The team behind the study hope knowledge of manganese's role will aid the manufacture of new treatments.

"We'd like to find targets inside pathogenic cell that could thwart their growth," Valerie Culotta (John Hopkins University Bloomberg School of Public Health and involved in the study). "The best targets are enzymes that the pathogens have, but people do not, so they would kill the pathogens but not harm people."

The bacteria's manganese mechanism could be a promising target, and the team's next plan is to map the bacteria's metal-containing proteins and find out how it extracts manganese from its environment. 

For more information, visit:
http://www.livescience.com/28120-lyme-disease-manganese.html

http://phys.org/news/2013-03-scientists-reveal-quirky-feature-lyme.html

The History of Lyme

While we tend to think of Lyme as a relatively new disease, it has actually been written about in European medical journals since 1883, when it was first described by a German physician. The characteristic "bulls-eye" rash, (which is probably the most widely-known symptom of Lyme Disease) was first documented by a Swedish physician, Arvid Afzelius, in 1909. And in 1921, the first medical reports linking swelling and joint pain with what is now known as Lyme Disease were published, at the same time speculating that ticks may be responsible for transmitting the illness. Evidence was found throughout the 20's and 30's drawing connections between the disease and joint, neurological, heart and psychiatric problems.

In the United States, Lyme appeared on the medical map with the first cases originating in the mid-1970's in a small town in New England called Lyme, Connecticut. At first, there were 39 children and 12 adults from this area that were diagnosed with what was then called "Lyme arthritis," a mysterious swelling & joint pain in the knees, generally accompanied by headaches. When a local Mother, Polly Murray, noticed that many children in the neighborhood seemed to be having the same symptoms as those going on in her home, she contacted the local health department. And thus we have the formal recorded beginnings of Lyme Disease in the United States.

In 1978, a researcher from Yale University, Dr. Allen Steere, suspected that the symptoms these patients were having were somehow related to tick bites. In 1982, while investigating an outbreak of Rocky Mountain Spotted Fever, Dr. Willy Burgdorfer discovered the actual bacteria, a spirochete that would be given his name, (Borellia Burgdorferi) that causes Lyme Disease. His research was able to prove that it wasn't the bite itself that was causing the symptoms, rather the presence of the Bb bacteria that was transmitted to humans when tick bites occurred. His important research was also able to link many of the infections that we now know as co-infections to tick bites as well.

GlaxoSmithKline came out with the first approved Lyme vaccine, LYMErix in the late 1990's. Although after much controversy, including lawsuits brought by claimants who had never had Lyme symptoms until after having the vaccine, it was pulled from the market. GSK cited poor sales as the reason for pulling the vaccine. After immunization many formerly healthy individuals developed what was referred to as "autoimmune" arthritis, and mysteriously also developed other symptoms of Lyme Disease. There is currently no Lyme vaccination available and I would recommend a great deal of caution if one is approved in the future. On a personal note, given the nature of spirochetes, I would be totally against ever allowing anyone to inject me or a family member with anything referred to as a Lyme vaccine!

The Infectious Disease Society of America came out with it's current Treatment Guidelines for Lyme Disease in 2006. The guidelines have added to the controversy by making it more difficult for doctors to diagnose and treat Lyme patients. The guidelines basically state that Lyme Disease can be treated effectively with 2-4 weeks of antibiotics, but that anything beyond 28 days provides no additional benefit to the patient, and in fact can be detrimental. The International Lyme and Associated Disease Society have come out with their own Treatment Guidelines for Lyme Disease which have taken into consideration the world-wide body of literature provided by physicians that are successfully treating patients with Lyme Disease, using combination antibiotic therapy, or long-term antibiotic therapy. The divide over Lyme Disease in the medical community continues to grow. Patients are caught in the middle, and are the big losers at the present moment, since many have to search for months, sometimes years, and in many cases travel out-of-state to find a doctor willing to treat them.

In 2008, Open Eye Pictures released it's Lyme Disease documentary, Under Our Skin, hugely successful at film festivals around the country. Since then, public and private showings have been raising awareness. Many Lyme patients and advocates have taken to the internet in an effort to spread awareness and aid in prevention as well. As the debate rages on, the history of Lyme Disease is still being written. There is still so much to be learned, so much that we desperately need to know about this debilitating illness. For more information on the great Lyme debate, check out Why the Lyme Controversy? a post from earlier this month that includes videos and other articles discussing the controversy.

Why the Lyme Controversy?

There could be an entire blog devoted entirely just to this subject, but I'm going to be lazy and give you my take on it, then just link to some of the best explanations of it that we've found over the last five years. So here goes: It's a very complex discussion, but what it all boils down to is that the medical community is divided over whether or not, once a person has been infected with Lyme Disease, and then treated with 2 to 4 weeks of antibiotics, it can still exist in the body as an active infection. Some doctors are absolutely adamant that it can't; some are absolutely adamant that it can. So the 64-BILLION-Dollar question is: Does Chronic Lyme Disease exist? Obviously, as someone that's been dealing with it for the past 10 years, YES. I believe it does exist.

But it's not as simple as that little question. What started with this basic debate, has grown into an all-out war, where the doctors that are actually successfully treating patients for Chronic Lyme Disease are being ostracized, picked-on, and punished, and in some cases, such as the case of Dr. Joseph Jemsek of North Carolina, they are not only losing their licenses but also their livelihood. Dr. Jemsek lost his license to practice and was then sued by BCBS for 100 Million Dollars, following which he had to declare bankruptcy. You can read his closing remarks to the NC Medical Board, just before they pulled his license for treating Chronic Lyme Disease, here. His story is detailed in the Lyme Documentary Under Our Skin. It all sounds absolutely crazy, but it really is happening. The important thing to remember in all this maelstrom of arguing, egos and money, is that there are patients involved. REAL PEOPLE with REAL PAIN, and very REAL ILLNESS that are being overlooked, ignored and downright discriminated against.

I was diagnosed with Lyme Disease in January of 2009, and I have positive blood tests to prove it. I spent six weeks in New England in 2003 and got home to a large red rash (non-bullseye) that appeared three days after returning from Boston. After five and a half years of mysterious symptoms and continuously declining health, I finally found a doctor who would help me. After undergoing almost two years of combination antibiotic therapy, I began to feel that I was getting my health back. Even though you would think I have a believable case of what is called late disseminated Lyme Disease, living in Utah has made it next to impossible to find an LLMD, or any doctor somewhat knowledgeable about Lyme. Doctors don't believe that Lyme exists in Utah, and apparently must also believe that if you are currently living in Utah that means you've never been anywhere else. If it didn't have such huge implications for my life, it would almost be hilariously funny. Almost.

When I became pregnant we had concerns about my lingering bouts with severe fatigue (my most debilitating symptom thus far) and also the possibilities and implications of Lyme Disease for our baby. My husband and I just wanted to find a doctor that could be at least sympathetic to what we were dealing with. But upon trying to look for an OB-GYN that was at least aware of Lyme Disease (we weren't looking for someone to treat Lyme Disease, we just wanted a doctor that was aware of it) we were informed by a family friend who is also a Nurse Practitioner, NOT to tell anyone that I had Lyme Disease or nobody would take me on as a patient. Um, excuse me....WHAT?!?

This is the REALITY that those of us with Lyme Disease, no matter where we're at on our journey with it, are faced with everyday. How can I have an illness that I live with every day, that affects my life, my family, my ability SO much, and have to HIDE it from my medical doctor in order to have the privilege of being seen as a patient? How can this situation happen in this country, where we are supposed to have the BEST -- albeit flawed and expensive -- but the BEST medical care in the world? This is one of the reasons that dealing with Lyme Disease is so difficult and so isolating. In addition to your serious physical ailments, you've also got to worry about trying to find a doctor who will treat you. In order to get treatment four years ago, I traveled from Salt Lake City, Utah to Seattle, Washington every 8 weeks to see an LLMD, a Lyme Literate Medical Doctor.

It's very difficult to begin to explain the nitty-gritty nuts and bolts of the situation, but we've found a few articles that do a pretty good job. Here are a couple of them:
http://www.columbia-lyme.org/patients/controversies.html
http://www.jemsekspecialty.com/twostandards.php

I also found this series of news stories from Lynchburg, VA on it, and thought the reporter did a good job of laying it out in a pretty clear, concise way. Again, it's not a subject that can be completely and effectively communicated in one sit down conversation, but this does a good job of scratching the surface. Each of the clips is only a couple minutes long:

The Lyme Controversy Part I:

 

The Lyme Controversy Part II:

 

The Lyme Controversy Part III:

 

Here's a clip showing the Lyme controversy playing out between a study published in the New England Journal of Medicine, and a study by Columbia University published in the medical journal Neurology, showing opposite outcomes:

 

For a more in-depth (but again, brief) look at the controversy you can also watch the Lyme Documentary "Under Our Skin" in it's entirety for free at http://www.hulu.com/watch/268761.

Poppy-Seed-Sized Disease Spreaders

This picture is really small, but hopefully an effective illustration of what you'll be looking for when you're checking for ticks. Hard to imagine that an insect this size is responsible for making me (and so many other people) so sick.

What Kind of Outcome are We Hoping For?

A lot of people have asked me about what I have to expect in terms of treatment and recovery from Lyme. The answer is that I don't really know. Lyme disease affects each person differently, which is one of the reasons that it's so difficult to diagnose and treat. Still, there are similarities and we can point to generalities in trying to chart a course for treatment and recovery. I've blogged before about the course of treatment I've opted for, which is sometimes called combination antibiotic therapy or long-term antibiotic therapy. It's controversial, and according to the CDC it hasn't been proven to make a significant difference. But the doctors that do it (visit the International Lyme and Associated Diseases Society to find out more about the reasoning behind it) report that it works to improve and treat about 80% of patients at various stages of LD. Among the doctors that do it, (referred to as LLMD's or Lyme-literate medical doctors) and the patients that have received it successfully, (and there are lots of them,) everyone is in agreement that the treatment is measured in years, and not in weeks or months. This is hard to wrap your head around, since with modern medicine, we have become accustomed to taking "miracle" pills or procedures that usually make us feel better in a few days or weeks. Treating LD is a marathon and not a sprint.

The reality for me is that when I began this journey with my initial diagnoses in January 2009, the doctor's best estimate at the length of my treatment was between eighteen months to two years. Now over a year into treatment, we are probably looking at another year or two of antibiotic therapy, and continued immune support for the rest of my life. I've had a couple major set backs, but for the most part, my treatment has been going really well. There is no cure for Lyme disease, but it is possible to get it under control. It basically goes into a remission of sorts, or dormant, with the possibility of recurrence under the right conditions (like when your immune system is down because of illness, stress or other factors) -- kind of like chickenpox and shingles. This is the reason that I'll work the rest of my life to actively support my immune system.

For the forseeable future, I'll continue to do exactly what I've been doing. Then after a few more months of improvement, we'll gradually start to cut back on the antibiotics I'm taking, slowly weening me off the high doses I'm currently on. Over time, I'll be able to stop the antibiotics all together, which will be wonderful! Basically, each of these steps will be determined by how I am currently doing, and how many different symptoms I'm dealing with at each appointment. The decision to begin cutting back on the antibiotics will be made when I am either symptom-free or mostly symptom free. Some of the symptoms may be permanent damage from the effects of the infection and the inflammation it causes, rather than being caused by the active infection itself. Obviously, we are hoping to get rid of all of my symptoms, but only time will tell.

I know that antibiotic therapy is controversial, but I feel like it's saved my life, literally. Each day is a challenge, and this is definitely the most difficult thing I've ever done in my life, but it's worth it! I've had a paradigm shift over the past two months as I've begun to love taking my antibiotics. No longer an annoyance, I realize that they are helping me to get my life back, and I look forward to taking them...giving my body and my immune system the boost it needs right now, until it's strong enough to be able to fight on it's own. I'm grateful for the physicians who have been open minded enough to listen to their patients, and to take a risk in the hope of relieving suffering and improving quality of life. I know that this treatment has done both of those things for me, and I am anxious to continue it!

Right now, Bryan and I are taking each day at a time, working on challenges as they come up, and enjoying and making the most of my good days, (which are happening more and more often!) Bryan has a degree in Biology with a minor in Public Health, so he had to take some classes on infectious disease during his studies. He says LD is the craziest disease he's ever heard of. I have to agree with him. There are so many random symptoms and issues that come up at the strangest times. We aren't really too concerned with most of these things, since we now understand what's going on with my body and why. For a long time, we've had to deal with many more questions than answers. I think that we're finally to the point where we're beginning to turn that around. It feels great!

The Lyme Disease Map Project

I thought this was really interesting. It gives individuals the opportunity of posting their story and also where/how they contracted LD by placing a pin in the map. To view the project or add your story, go visit the Lyme Disease Map Project.

Scary Stuff

This was the most current map I could find on the CDC website. It's from 2003. Infection rates have increased by 50% in some states, just from 2007 to 2008.

Cure Unknown: Inside the Lyme Epidemic

This is a book that I found on Amazon.com when I was searching for anything I could get my hands on about Lyme. I would highly recommend it for anyone associated with Lyme disease whether directly or indirectly. It is written in a style that makes it feel as though you are reading a good novel, but it's packed with helpful information about the disease and the controversy surrounding it.

Pamela Weintraub is a Lyme survivor herself, and also helped her husband and her two boys battle this difficult disease. Her background as a science writer adds to the intensity and straight-forward presentation. You can purchase it new or used on amazon.com starting at about $10. If you're looking for a good read that will help you understand or empathize with Lyme disease, this is a GREAT book!

The Latest

I had another doctor's appointment in Seattle on Monday. It went well, but it was discouraging in some ways. I had been feeling really well (more energy, less aches, no numbness in my arm & leg) for almost 5 weeks. Three weeks ago I finished my initial prescription of Mepron, and after three weeks off the medication, many of my symptoms have returned. It was wonderful to have a reprieve and feel better for awhile, but it is really discouraging to have things coming back.

My doctor was very encouraged that I had responded so well to that particular cocktail of antibiotics and other medications. Because she believes we are on the right track, I'm going to be doubling all of my meds, in addition to starting on a blood thinner. The latest research on Lyme shows that 80% of patients that develop chronic Lyme have a coagulation problem that prevents the medications from being fully absorbed. The blood thinners help counteract this. Last time I was in Seattle I had blood work done that confirmed this condition and so hopefully the blood thinners will make a difference as well.

It's great news that we have found the right cocktail, but doubling my doses combined with boosting absorption with blood thinners means that I will probably be a lot sicker for awhile. I was really discouraged by this, but I just have to remember that it's part of the process. I've read a lot of stories of people that respond well to medications after a month or two, but then as soon as they go off of them, the symptoms come back. This is the reasoning behind long-term antibiotic therapy.

I've read testimonial after testimonial of people that had been told by their doctor that after a month or two of treatment, they would just have to live with their remaining symptoms and ailments. In desperation, each of these people sought out the physicians who believed in long-term antibiotic therapy, and after a year or two of treatment (sometimes more) most of these people have made full recoveries. It's controversial, but the idea is that the symptoms are caused by an ongoing, chronic and active infection...and that once you finally eradicate the infection, the symptoms go away.

I'm about five months into treating the infection. While I'm very grateful to know what's going on, and to feel like I'm on the right track in terms of treatment, I have to repeatedly remind myself that it's a long process. I guess I'm a little impatient. I'm trying hard to be positive, and to focus on the good things in my life. When I feel good, I've been trying to make the most of it, which sometimes causes me to try to make up for lost time and I end up over-doing it. There's a balance and I'm trying to find it.

An Ounce of Prevention or a Pound of Cure

Lyme disease has been reported in all 50 states, and is most common in areas with woods, mice, deer and humans all residing in close proximity. While it can be a very serious disease, it's relatively easy to protect yourself and your family from being infected in the first place. 

1) Check for ticks

After working in the yard, hiking, hunting, fishing, camping, playing at the park or engaging in other outdoor activities, always do a "tick-check" when you're done. This includes both looking for ticks, but also running your hands up and down in both directions over your arms, legs & trunk. Have someone help you check your back, neck & scalp. Ticks are tiny, (the size of a poppy seed or smaller) and can look like a tiny, raised freckle, so make sure you look closely. How does this help? Experts believe that ticks have to be attached to you for at least 24 hours before they are able to infect you with the Lyme bacteria, so doing a tick check several times a day while engaged in outdoor activities is the best way to ensure that you won't be infected. 

2) Go long, or stay home.

While it's not always plausible, experts recommend wearing long pants and long sleeved shirts when hiking, camping, hunting or fishing to keep the ticks out. Further, they recommend tucking your pants into your socks, or using rubber bands to close off open pant legs. At the size of a poppy seed, you don't want to give these critters even one inch to make themselves at home...giving up the outdoor fashion statement is a lot better than giving up your good health...possibly for the rest of your life.

3) Use bug spray with DEET.

DEET can cause problems in too great quantities, so be careful with this one. I know a guy that became deathly ill on an African Safari, and after several months of tests back here in the US, they discovered it was DEET poisoning. This should not be an issue for the occasional family camping trip or the annual hunting trip. Personally, I would rather take my chances with the DEET poisoning, than deal with Lyme disease. Just as DEET products help guard against West Nile Virus by repelling Mosquitos, so too it repels ticks. Use it. You can buy it at WalMart.

4) Stay away from tick hotels.

Avoid tall grasses, (including sea grass) underbrush, weeds or other types of vegetation that are overgrown. When hiking in the woods, avoid brushing up against branches, grass or underbrush hanging in the trail, as this stuff is a favorite tick hang out. Don't kick, play in, or under any circumstance, roll in fall leaves. Make sure your kids understand this as well. Ticks love dead leaves and they are very opportunistic. When hiking, camping, hunting or fishing, DO NOT SIT AGAINST OR ON TREES OR TREE STUMPS. You may as well roll out a welcome mat. Ticks live in the bark of trees, and by doing these things, you are literally walking up to their front door.

5) Watch for rashes.

If, after any amount of time outdoors, you develop any sort of a strange rash, you should go to your doctor. Most people believe that Lyme disease causes a "bulls-eye" rash, but this is true in only about 30% of cases. Far more people develop solid, raised, red rashes, round or oblong shaped, that don't itch or burn. Most of them are large, with a circumference of more that 4". If there is any question about a rash, you should go to your doctor. Keep in mind that most doctors will not recognize a rash as being Lyme related unless it is a bulls-eye, so you have to be insistent that a test be done. Request to have a Western Blot done, which is far more accurate than the commonly used ELISA test. Since most people will not have enough antibodies at this stage to get a positive result, most Lyme specialists will do the antibiotics as a precautionary measure.

Since the rash is the skin's reaction to the very start of the bacterial infection, if you are treated with the standard two weeks of doxycyclene while the rash is still present, your chances of never developing full blown Lyme are very, very good. By the way, I went to a doctor in September 2003 for my rash, and was told it was an allergic reaction to something. Had I known about Lyme back then, and insisted on a test, I could have avoided years worth of illness, as well as the time and expense of trying to get better.

6) Be aware of the symptoms.

There are many people with Lyme disease that have no recollection of having been bit by a tick, or ever having had a rash. These people are usually the ones that take the longest to be diagnosed, thus giving the bacteria a free ticket to move about the body at will, wreaking havoc by doing two different things. First, the bacteria themselves release neurotoxins as part of their normal function. In late stage Lyme, the effects of this build up of neurotoxins can be dramatic and devastating. Secondly, the bacteria drop pieces of their protein lining all over the body's tissue as they migrate to different areas. Some scientists believe that this is one of the reasons for the extensive inflammation attributed to late stage Lyme, as the immune system tries to seek and destroy these proteins, and ends up attacking it's own healthy tissue. 

The most common symptoms of early Lyme are joint pain & swelling, muscle aches, weakness, fatigue (varying from mild to severe), unexplained fevers, and sometimes confusion and short term memory loss. In late stages, Lyme is often misdiagnosed as Chronic Fatigue, Fibromyalgia, Lupus, MS, Parkinson's, ALS (Lou Gherig's Disease), and Alzheimer's. Obviously, by looking at that list, you can see how devastating this bacteria can be when allowed to take over. I have a list of my own specific symptoms in the post, "Lyme Symptoms."

I think I could have avoided getting Lyme in the first place, had I known about it at all, what to look for, and what to avoid. I had heard of Lyme, but had no clue about what it actually did, or what it would look like in real life. Hopefully, through my own experience, caused by lack of knowledge, I can help other people avoid coming down this same path.

Lyme Symptoms

Because Lyme is a bacterial infection caused by a spirochete, or spiral shaped bacteria, it is able to essentially drill through tissue, allowing it to spread virtually anywhere in the body. Because of this, Lyme can cause all kinds of different symptoms involving all the body systems. This can add to the confusion and delay in diagnosis, because most physicians aren't able to connect the dots of all these seemingly unrelated symptoms.

Most of these symptoms start out mild, and usually "wax and wane" meaning they come and go, sometimes completely resolving for a time, only to return with increased intensity sometimes months or years later. My symptoms followed this same pattern, usually in a 3-4 month cycle. Each time they came back, they got a little worse, with new ones added each time. Adding to the mystery, some would come and go frequently, but others would crop up for a month or two, then completely go away, and never return. For almost three months in early 2008, I got sick anytime I ate anything. There was no obvious reason for this, and after about 90 days, this peculiar symptom went away and I've never had it since. 

It really does make you second guess yourself and what you're feeling, and it's easier to understand why some doctors react skeptically when you're explaining all these bizarre symptoms.

Over the last five years some of my symptoms have included:

extreme, debilitating fatigue

muscle aches & weakness

headaches, sometimes lasting 4-6 weeks

unexplained low-grade fevers

night sweats

joint pain and swelling

stiff neck

dizzy spells

swollen glands

neck & right shoulder “locked up”

frequent sore throats

severe stabbing abdominal pain (I've had appendicitis, it's similar)

difficulty focusing

inability to complete sentences

heart palpitations

nausea

loss of appetite

stomach problems

short term memory loss

numbness and tingling in limbs (particularly my right arm & leg)

vertigo (this lasted for almost two months)

anxiety (especially in social situations, never before a problem for me) 

frequent infections & low immune function

general feeling of being unwell

Where Did I Get This?

When I first started looking at Lyme as a possibility, I had no idea when or where I would have picked it up, having no recollection of ever having had a tick bite or rash. But as I have researched more and more, I am pretty confident that I know exactly when I got it. 

First, a few facts:

Ticks that can transmit Lyme to humans are in the nymph stage of their two-year life cycle. At this stage, they are usually about the size of a poppy seed, but can be as small as the period at the end of this sentence. 

Ticks like to hang out on blades of grass, the bark of trees, and ends of branches, waiting to latch on to unsuspecting passers-by.

Most Lyme rashes are not the well-known "bull's eye" that everyone associates with Lyme. In fact, the majority of reported rashes are nothing like that. One of the rashes that can indicate Lyme is a large, solid, oval-shaped, raised rash at least 4-5" in diameter that doesn't itch or burn. 

Rashes generally appear 10-14 days after a tick bite.

New England, particularly parts of Connecticut, Maine, New York and Massachusetts are considered endemic for Lyme Disease. Cape Cod is one of these places. 

The initial symptoms of Lyme (after the rash and immediate flu-like symptoms that occur in the first couple of weeks following a bite) begin to occur within 6 months to one year of an infected tick bite. 

How This Applies to Me:

In the summer of 2003 I spent 6 weeks in Boston, MA with my mom. We were there for her to get treatment for cancer at Brigham & Women's Hospital. While we were there, at the end of August, we visited Cape Cod for the day. This included a trip to the beach where we enjoyed the picturesque views and took a lot of pictures, including a few in the sea grass. 

About two weeks later, on September 11, 2003, (I remember the exact date because it was September 11th) we were back in Coeur d'Alene, Idaho. As I undressed to shower that evening I noticed a large, red, raised rash on my hip. It was probably 6-7" in length and 4-5" high. It didn't itch or burn. I showed my mom, who encouraged me to see the doctor. When I did go to the doctor, the rash was dismissed as an allergic reaction of some kind, possibly to laundry soap. I remember seriously doubting that at the time, but not knowing of any other plausible explanation, I let it go. 

My first strange symptoms, (that I've had on and off for the last five years) began in January of 2004. Random low-grade fevers, usually at night, coupled with night sweats, frequent sore throats, and mild joint pain & swelling, all combined to cause me more than a little concern. When I went to the doctor about these and other symptoms including heart palpitations and thinning hair, (I know it's hard for some of you to believe, but my hair used to be much thicker) I felt completely dismissed. 

My mom had died in late December 2003, less than a month previous, and the doctors felt that I was having anxiety associated with what they described as the fear that I had cancer, too. At the time I remember thinking sarcastically that fevers could not be triggered by anxiety...but I didn't say that to the doctor. Initially, back in 2004, as my symptoms and doctors visits continued, I was put on a couple different anti-depressants. They didn't provide any relief from the symptoms, and I soon quit taking them. Over the last five years, as the symptoms have not only continued, but have gotten progressively worse, I have continued to feel dismissed by doctors. I think the timing of all of this probably made my journey to a diagnosis a lot more difficult, although most people with Lyme are routinely misdiagnosed for several years. 

When I went to my appointment on Monday to get my test results, the doctor told me that I had the East Coast Lyme profile, (infected ticks from different geographical areas carry different co-infections...other tick-bourne bacteria that can help to determine where a person became infected. East coast ticks carry Erlichia, west coast ticks carry Rocky Mountain Spotted Fever, etc.) She then quizzically looked at me and said, "But you've never lived on the East Coast." I then explained the six weeks I had spent in Boston, and her chin nearly hit the floor. After explaining the other details I listed above, we are both convinced that I got this in late August 2003. 

The good news is that I've only had this for five years. Sure, it's longer than what you would hope to have these bugs in your body, trying to take over. But it's not as long as what the doctor had originally thought, and that's great news. It means I have a very good chance that we'll be able to resolve and reverse all of the symptoms, perhaps within the next six months; AND that I have an excellent shot at making a full recovery, within possibly the next two years. I'm absolutely elated at the thought of getting my life back. 

A Clinical Diagnosis

Some of you may wonder why I've been on treatment since January, but I just got my blood work back this week. That's a really good question, and one which I have read a lot about, so I'll share a little bit about what I've read. 

For the most part, diagnosing Lyme is based on clinical data, (things the doctor can observe like symptoms & medical history) more so than blood tests. This is due to several different factors, but mainly because the tests for Lyme are not fully reliable. It's also further complicated by the fact that after you've had Lyme for an extended period of time, the immune system in certain individuals becomes so overwhelmed that it simply gives up, and quits producing antibodies. 

Blood Tests for Lyme

So, as I stated above, the tests for Lyme are not fully reliable for several reasons. First, they're not very accurate, ie., 30-50% of people that actually have Lyme will test negative for the Lyme antibodies due to problems with current testing methods. The only tests available right now test for presence of the Lyme antibody. Unfortunately, in people with weakened immune systems, (which applies to most people with Lyme) the immune system may not be producing enough antibodies in order for them to be picked up by the test, which is not very sensitive.

Additionally, as I also mentioned above, the body may no longer be producing antibodies after late disseminated or chronic Lyme disease has set in, causing the test to come back negative in an individual who may in fact not only be positive, but in all actuality also be extremely ill. 

Clinical Data

For these reasons and others, physicians who specialize in Lyme rely not only on the test results, but also on the clinical data. When I met with my doctor for the first time we spent two hours going over my medical history including current & past symptoms, past tests, past diagnosis & past treatments. We also covered my interests and outdoor hobbies, in order to determine the risk & possibility of past exposure to Lyme disease. 

If, based on your medical history, symptoms, and risk of exposure, the physician can establish a high probability that Lyme may be the culprit, they may choose to begin treatment, as my doctor did. With Lyme disease, time is of the essence, and any delay in treatment can lead to further dissemination and the appearance of additional, unnecessary symptoms. 

My physician opted to begin treatment immediately, by putting me on supplements that would help to start rebuilding my immune system, as well as anti-bacterial and anti-microbial medications that would help to prep my body for antibiotic therapy, which would begin once my blood tests had come back. The blood tests included a complete work up of my immune system markers, detailing my body's ability to fight infection. This also provides a lot of information about what the body has been fighting as well. 

It's interesting to look at the roughly 30 pages of test results, most of which I don't understand. There are a few actual photographs of my microscopic blood smears on slides, showing the actual bacteria that has been making me sick. It was extremely interesting, but a little creepy at the same time.