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.

You Tube Video

You may have noticed that I've posted several videos (to the right) from You Tube. These are videos that I've found that I think offer a good brief synopsis of the whole Lyme picture. The main three I've selected are consecutive news reports about Lyme done by a news anchor that suffered with it for several years before discovering what was going on. If you have a few minutes, I think they're pretty interesting. Just a note, sometimes random stuff comes up, but the main one I wanted to share was the three part news story. 

I'm going to try to offer more content about Lyme education for awhile, and less about me...hopefully this is helpful. :)

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

Antibiotic Update

Ok, I've been taking antibiotics now for 12 days, so here's a quick update. To begin with, I was taking one dose of doxycyclene in the morning. I was pretty sick, with more fatigue and muscle aches than usual, and even the same abdominal pain that I was having last fall. The abdominal pain lasted for 3 or 4 days, but the fatigue and muscle aches were pretty consistent for the first seven days. On the eighth day, I added in a second evening dose of the doxycyclene, so now I'm taking it twice a day. That was last Thursday, March 12th. I noticed an almost immediate (literally the next morning) burst of energy. When I say "burst" I really do mean it. All weekend I felt like I had almost endless amounts of energy, especially in comparison to how I've felt over the last 5 or 6 months. My joint pain, muscle aches and weakness have continued, but it sure is great to have the energy to get up and do things that I need to do.

This Thursday I will add Biaxin twice a day into my routine, and then I will add twice daily Plaquenil into the mix seven days after that. When I've completed this initial "ease-in" period, I'll be taking doxy, Biaxin & Plaquenil twice daily all at the same time, in addition to about 40 other pills (mostly supplements like probiotics, etc.) hourly throughout the day. I'm excited for the continued energy, and at the same time a little nervous about possible side effects. I'm learning to take one day at a time and appreciate the days when I feel good. The last few days have been great for helping me to see that there's light at the end of the tunnel, and that I really can feel good again. I can't even hardly stand to wait!!

Can I Complain?

So today I ventured out of my house for the first time since I got back from my trip to Dr. Seattle, except a really quick trip to the pharmacy to fill my prescriptions. Right now, I am still dealing with pretty bad fatigue, muscle aches and painful joints, (especially my hands & knees.) As a result, I have two speeds right now: slow and slower. 

Since I was almost out of groceries, this afternoon I decided to make a trip to Costco, list in hand, in an effort to be as quick as possible. Why Costco you ask? Not exactly a quick stop, ever. Yes, but they have a large selection of Gluten-free and organic stuff, along with great produce, and all for pretty great prices. Anyway, so I decided to brave the huge warehouse grocery store around 2pm, trying to avoid the crazy crowds. 

So there I am, gimpy little me, trying to push a huge cart around. This is the worst part of grocery shopping for me right now. It just makes me really, really tired. Anyway, at Costco I usually do a loop around the store, grabbing things from my list. After I was about half way around, with several items in my cart, all of a sudden the wheels on the cart totally locked up, and I was struggling to push the cart. Let me be clear here: I had already been struggling to push the cart around, now it was all I could do to get it to budge. I tried to figure out what the problem was, but I couldn't see anything...so, already really slow behind a shopping cart, I became even slower.

I was exhausted, too tired to go back and find a new cart, but exerting too much energy trying to push a cart that wasn't cooperating. It was also obvious that I was ticking off fellow shoppers with my snail-like speed. It's a horrible feeling when you are literally not able to do something, and instead of trying to be helpful, other people get mad at you. I was on the verge of tears, and ready to leave without my groceries, when miraculously whatever had caused the wheels to lock up immediately went away. I dunno. So I hurried, (as fast as I could) to get the last few items and get out of there. 

As I was trying to push the cart out to my car, there were two more incidents of people being rude because I was being slow. I really hope that these people had good reasons for their obvious and seemingly disproportionate frustration, like a family member in the ICU, or perhaps a wife in labor? I know I'm slow, and it's frustrating to me. But can't people be a little bit patient? 

After my humiliating shopping trip, I've recommitted myself to being nice to people. I know I don't necessarily look sick. I'm sure this adds to people's frustration with my slow and slower speeds...but you just really don't know what's going on with anyone. I'm realizing that I have the opportunity right now to learn all kinds of lessons about patience, compassion and understanding. I'm trying to remember them, and hopefully in the future I will remember that when I'm in a hurry at the grocery store. 

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.