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.

An Official Diagnosis...FINALLY!

So on Monday I got the results back from all my blood work. Remember those 24 vials of blood they took in January? I'm not sure that I've ever been so nervous, apprehensive or anxious to go to a doctor's appointment.

Before I get into the results, I would just like to remind everyone that none of these bugs are contagious, unless I bite you and bleed on you...so since I'm not a vampire, don't be afraid to visit. :)

Both tests that were done for Lyme disease came back positive, which means I am a certifiable Centers for Disease Control (CDC) confirmed case. Congratulations me!!

I also tested positive for several co-infections. Co-infections are other bacteria that ticks carry in addition to Borrelia Burgdorferi (the Lyme bacteria.) My doctor said that most patients with Lyme have one or two co-infections. I ended up with several, including two different strains of Babesia, which is similar to Malaria.

These are the co-infections I tested positive for:

Babesia Microtii (infection of the red blood cells)

Babesia Duncani (infection of the red blood cells)

Erhlichia (infection of the white blood cells)

Hemobartonella

Chl. Pneumonia

Herpesvirus 6 (a respiratory infection similar to pneumonia)

I also tested positive for:

Epstein-Barr Virus

Human Parvovirus

HLA Haplotype (associated with Narcolepsy...hahaha)

So basically, the test results show that I'm a walking petrie dish filled with bacteria.

They also did a full screen of my immune markers, which helps to show how my immune system is doing with fighting all of this stuff. Understandably, the results showed that my poor little immune system is pretty overwhelmed, and a couple of the numbers rank me among HIV or chemotherapy patients in terms of my immune function.

Mostly, I'm just feeling relieved and validated that there is a reason I've been feeling so horrible for the last 5 years! My doctor said she is amazed that I have been able to be up and around at all given what my body's been dealing with. I'm actually relieved to finally have some solid answers about what's been happening to me and why. The better news is that there's treatment for it. I also feel very blessed to have stumbled onto all of this, but more about that later.

A Lot of Answers

In the last 24 hours I've gotten an overwhelming amount of information about all of this --by that I mean about Lyme disease and particularly about how it applies to me -- which has been a huge relief.

I have literally just gotten back from my trip to Oregon, where I stayed with my brother Grant, who has been kind enough to drive me up to see the doctor in Seattle, about two and a half hours north of Portland. 

I'm pretty worn out tonight, but hope to add a few more posts tomorrow updating all the information...I'm relieved and encouraged by what I found out. 

How is Lyme Disease Transmitted?

Lyme Disease is transmitted through tick bites. Yes, you heard me correctly. Ok, I'll be honest. I've had a hard time coming to terms with the fact that I have an illness caused by a tick bite. All seriousness aside, it's just...well, just so....redneck. But all joking aside, because of what they could possibly be carrying, ticks are serious business, and they deserve some serious respect. 

So, Lyme Disease is most commonly transmitted through the bite of a tick, usually a deer tick. These are not the same as ticks that are generally seen on dogs, which can often be much larger than deer ticks. Dogs, of course, can also host deer ticks...but if you've ever pulled a tick off a dog, usually they're much bigger than the kind of tick that a human would be able to miss.

About 10 years ago, our Golden Retriever, Buddy, picked up several ticks on an overnight backpacking trip to Siouxon Falls in Washington State. By the time we discovered the ticks four or five days after the trip, they were engorged with blood, and each of them was the size of a large honey bee. Obviously, if one of those were attached to you, it would be hard to miss. 

Deer ticks are very small insects, although I had no idea how small. Deer ticks can vary in size, but generally speaking, a full grown tick is around the size of a sesame seed. Unfortunately in the nymph stage, (the stage where a human bite is most likely to occur) they are as tiny as a poppy seed, or even the period at the end of this sentence. Like most people, I had no idea they could be so small. In addition, when they bite, they release an anesthetic of sorts, numbing the area of attachment. They also release an adhesive-like substance around their body, so that they are held in place as they feed. From what I've read, they usually look like a tiny raised freckle. 

Ticks are very sensitive to dryness, so in dry weather they burrow into tree bark or hide under leaf litter. They much prefer damp weather, and in climates with more moisture they like to hang out on the tips of branches or blades of grass along trails, like hitch hikers. As unsuspecting humans or animals brush up against foliage on these trails, the ticks can cling to clothing or fur, and then after exploring their new host for almost 24 hours, they find a comfortable place to attach themselves and begin feeding. They are miniature vampires, literally sucking the blood of their host, and if undetected they will remain on a host for up to 5 days. 

Understanding all of this, it's easy to see how it could be possible to miss a tick. I don't remember ever having been bitten, but I've spent enough time outdoors (both in the Pacific Northwest and New England) to easily have been exposed to ticks carrying Lyme.  

5 Days In...

For those of you that might be wondering about it, when I went to see the doctor and was diagnosed with late stage Lyme, she told me, "You've got a really long road ahead of you." Hence, the name of my blog. :)

Today is my fifth day of treatment, and I'm doing ok. I'm taking about 30 different things, at eight different times throughout the day. Surprisingly enough, I'm getting used to it, and it hasn't been as bad as I'd anticipated.

I've also been officially off sugar, dairy and gluten (which includes wheat, oats & barley)  for almost a full week. I'm amazed about this, because I'll be honest, when I first found out that I had to eliminate these things completely, I was really discouraged. I think it would be difficult for most people to eliminate one of the three completely from their daily diets...with all three it's like, what do I eat?? With the help of some resourceful friends, and a thorough search of WalMart and Costco, I've come up with some good options for now. Obviously I can have all the fruits and veggies I want. And the other stuff will become more familiar and easier with time.

I have noticed significant improvement in the swelling in my hands, and my joint pain has improved substantially, it's still there, but I don't have to hobble around the house right now. I've also got a lot more energy. I feel alert and awake, which is unusual for me in the past few months. The last two days I've been able to wake up without an alarm clock at 7am. That hasn't happened in several years!

Anyway, I'm not sure if these things have to do with the diet, supplements & medications I've begun, or if it's just part of the natural cycles that have been happening all along. For the last several months I've noticed that I will have 2 or 3 "good" days -- days where I have more energy and less pain than others -- and then I will have 4 or 5 "bad" days -- these are the days where it's hard to get out of bed. It doesn't really matter...I've enjoyed having the energy and the slight reprieve from the pain. Whoohoo!

I scheduled my next appointment yesterday also. I'll see the doctor again on Monday, March 2nd. That's when I'll start antibiotic therapy. I'm not really looking forward to that, since I haven't heard fun things about it. But at the same time I'm told the antibiotics are what really help, and after you've made it through the first few months, you feel significantly better.

What is Lyme Disease?

I think most people have heard OF Lyme Disease, and yet most of us have no idea ABOUT Lyme: what it is, what the symptoms are, and the chaos it can create in the body. I have spent the last six weeks reading everything I can about Lyme, and I'd like to share some of the most interesting things that I've found.

Lyme Disease or LD is primarily an infection caused by a bacteria, Borrelia burgdorferi or Bb. The bacteria is a spirochete (pronounced spy-row-keet) meaning it is spiral or corkscrew shaped. These nasty little critters are pictured below. 

 

Because the bacteria is shaped like a corkscrew, it is able to literally drill through tissue. This allows the infection to spread to almost every part of the body, infecting multiple organs and causing a wide range of symptoms. 

The most well-known symptom of Lyme is the characteristic "bulls eye" rash that may develop soon after a person is bitten. While the rash is well-known, not developing a rash is not a clear indication that you're not infected. Interestingly, research now shows that less than 50% of people who tested positive for LD ever recall developing a rash or even being bitten by a tick. 

Other symptoms of early Lyme include fever, fatigue, headache, and depression. Left untreated, late symptoms can involve the joints, heart, and central nervous system. Most of the literature I have read puts an emphasis on the commonality of ongoing, profound fatigue, foggy thinking and pain in the joints and muscles that is persistent over years of time. Because of the severity of the symptoms in late stage Lyme, many patients are often misdiagnosed as having MS, ALS, Parkinson's or Alzheimers.

The Treatment Plan

I started treatment on Monday, January 26th, with 30 different pills taken at eight different times throughout the day. Needless to say, I'm feeling a little overwhelmed. In addition to all the pills, I will have to eat gluten, sugar and dairy free in an effort to increase the efficacy of the treatments, help boost my body's own ability to heal itself, and minimize negative side effects of the medications I'll be taking. I'm supposed to do 2-3 days of light weight training each week. In the past, this has been simple and something I have enjoyed doing...however feeling the way I do now, it seems like a tall order. 

I will start antibiotic therapy when I go back to see the doctor in another 4 weeks.  I will be doing combination therapy of four different kinds of antibiotics, administered daily both orally or IV, they have to see what I need specifically. They won't know that until all my blood tests are done. The therapy can last for several months or longer, depending on how I respond. I will be on treatments, (antibiotics, medications and supplements) for 3 to 5 years in all likelihood.

The treatments are going to make me really sick (supposedly I'll feel like I want to die...that's funny, I thought I was already really sick...haha) for the first few months, but then I will start feeling better and should start to see improvement in energy and some of the other symptoms that I've been having. The doctors that are doing this have had great success with it and the treatment is about 90% successful with most symptoms resolving, so I feel like I'm doing the right thing for me. 

Getting a Diagnosis

On my friend's recommendation and my own research over a month's time, I decided to travel to Seattle to visit a doctor that specializes in Lyme and other related infections. After speaking to the doctor several times on the phone, I made the appointment and booked a plane ticket. I continued researching as much as I could about Lyme Disease, trying to sift through all the information and misinformation that's out there. 

Last week, I flew to Seattle to meet with the doctor. For two hours we went over my medical history in great detail. We also went over where I had lived, my outdoor activities, where I have traveled and other risk factors that might help determine my likelihood of having contracted Lyme. She also tested my reflexes and motor skills in addition to a traditional physical exam. The doctor said that based on all of the clinical data (things the doctor can observe), I was a classic case of what they call "Late Lyme" because they think I have had it for at least 10-15 years in order for it to be advanced enough to be causing so many symptoms that affect so many different body systems. In order to determine exactly where I'm at and how to proceed, they took 24 vials of blood to test all sorts of things from immune markers to the possibility of other infections or complications.

I was pretty shocked at first, but in reality I'm glad to know what's going on and I'm anxious to try to start addressing it. The treatment plan I've decided to follow is controversial, but I've done a lot of research and I feel it's the right thing for me. 

A Little Background on Me

If you've known me for a long time, you know that I've pretty much had medical problems since literally the day I was born. The last ten to fifteen years in particular have been difficult with lots of strange and crazy things happening with my body. Since 1995, I have had 9 surgeries, most of them unrelated and for the most part not serious. I've just always felt that Heavenly Father thinks I learn important things through being sick. It's been the story of my life. In 1995 I had a kidney removed, and since then it's seemed like my immune system just hasn't wanted to work right. I know that they're not directly related, but it's been since about then that I've had all kinds of strange things going on, and it seems like I've been constantly sick with colds, flus and other bugs. 

Over the last four to five years, however, I've been to multiple different doctors for a whole laundry list of symptoms. I've had recurring bouts (usually lasting about 6-8 weeks) with arthritis, fevers, chills, night sweats, muscle aches, extreme fatigue, nausea, vertigo, headaches, sore throats and other strange symptoms. I also have hardly any immune system to speak of, and I seem to get anything that's going around. 

In addition to all the different doctors, I've been in to the ER for severe abdominal pain several times a year for the past four years as well. The doctors always run lots of tests. Blood panels, ultra sounds, MRI's and CT scans. I've been tested for everything imaginable, and even sent up to the Huntsman Cancer Hospital to have my liver scanned using advanced equipment...that was a little scary. After all the tests, it always ends up with them sending me home with the same thing: a prescription of pain meds and no diagnosis. 

During this whole process, one of the most frustrating things for me has been the unwillingness of the doctors to look at my entire health history to try to figure out what is going on. I've been having most of these symptoms on a recurring basis for years, with each recurrence getting a little worse, and with new symptoms appearing. To me, it all seemed somehow related, and yet none of the doctors I saw, (NONE OF THEM), were interested in discussing what happened six months ago, let alone six years ago. 

Over the last four months in particular, my symptoms have seemed to be escalating.  In late September of last year I noticed that my arthritis was getting worse and the fatigue was coming back. By mid-October I was having severe abdominal pain again and was nauseated constantly to the point of being unable to keep food down. Since then I've been to six specialists, the whole time making no progress towards an explanation, while continuing to get worse and worse. I've gotten to the point where 3-4 days a week I am in bed the entire day because I literally don't have the strength to get up, and I am in constant pain. I have also started having fevers again, usually in the evening, usually 2-3 times a week.

In mid December, I was quickly getting to the end of my rope. After having seen all the different specialists, an additional round of tests including exploratory abdominal surgery and a complete GI work-up (this included a colonoscopy and endoscopy...yeah, that was fun) the doctors were still baffled. As my symptoms (all of them) continued to get worse, the doctors recommended regular lidocane shots in my abdomen to deaden the nerves that they thought were causing the pain. What....? What about my other symptoms? 

During all of this, a friend of mine that I literally hadn't talked to in at least 10 years contacted me on Facebook and asked about what was going on, since she had seen so many people commenting on my health. After a brief conversation about things, she suggested I look into Lyme disease as a possibility, and consider being tested for it. I'll admit that my first reaction was to brush the idea off. Everyone has opinions and suggestions, especially in a situation like this. I had heard of Lyme, but had no idea what it was or what it did.

However far-off I thought the suggestion was, I agreed to read some links to articles that she emailed me. As I read through the first article, I couldn't believe what I was reading. It seemed as though the article could have been written about ME. All the symptoms I was having, everything I had been tested for, all the things I've been "diagnosed" with over the last ten years were in that article. I continued to read the other information and felt even more strongly that in the very least I did need to be tested for Lyme.