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.

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.

Happy Fall!

With the coming Holiday season, I always love to sit back and count my blessings, and they are many. Life is wonderful, even with all it's challenges. This has been an interesting year with lots of learning experiences. First, as newlyweds, my husband and I have been working on starting to build our life together, and in September we celebrated our first anniversary. We have had a wonderful first year of marriage, and I feel like I have no bigger support or loyal partner in my fight against Lyme disease than I have in my wonderful husband. He has been my rock and is the biggest  blessing in my life. His patience and support through the ups and downs of treatment has been unwavering. His understanding of my physical, emotional and sometimes cognitive limitations has allowed me to be able to handle all of these things in a more positive way, although sometimes it has been extremely difficult. I'm sure it's been difficult for him, too, but he's never shown it. I am truly blessed.

The biggest news for me lately, is that we have recently decided to try a new approach to battling Lyme disease -- along with my current regimen -- and I'm not sure that I've felt this excited about possibilities the entire time I've been sick. I've researched this option and have personally talked to several people that are using it with wonderful results. Each one has had Lyme disease for varying stages of time, ranging from several months to almost 20 years. I have been very encouraged in discussing various symptoms, treatments and complications, all of which are very familiar to me, and in hearing of positive results and the one thing I feel like I haven't had much of since this strange odyssey began: HOPE. I want to see how it works for me, but will be sure to share my results and thoughts, including more information about this option in future posts.

The other thing I've tried to do this year, is to share with everyone I can the importance of being educated about Lyme disease. It's just way too important, and WAY too late once you've got it. Oh how I wish someone had informed me before that fateful visit to the East Coast in the late summer of 2003! All our extended family have gotten several email reminders from me on the importance of awareness. Sadly, I think most people really believe that it's rare, and only exists in certain parts of the country. So the warnings go for the most part unheeded. Lately I've heard several radio spots on the importance of protecting yourself from West Nile Virus, sponsored by the Health Department. If only people understood that Lyme is SO MUCH more prevalent, and far more dangerous to the average American than WNV.

Probably most of the people I talk to about Lyme think that I'm a little over-zealous. I can understand that. It's a complex disease with a very confusing history, controversial in the medical community and at best, difficult to treat. Still, I feel the need to share and in the interest of time, I've tried to come up with "talking points" to discuss with people whenever I hear of someone suffering with mysterious symptoms like joint pain or fatigue that have remained undiagnosed in spite of visits to lots of doctors. I know what it's like to suffer through that for years, and it's so unnecessary! I feel like I have an obligation to share with other people so that hopefully someone can avoid that type of situation.

I've had a hard time with keeping the blog up-to-date this year, but I will write more about my escapades in future posts. For now, I'm fighting the fight, and for the most part, feeling better. That's always something to be grateful for!

The Cat's Outta the Bag

Well, I officially outed myself on facebook. Until now I wasn't sure I wanted everybody to know that I have Lyme disease, since sometimes I feel like the "cootie girl." But when I get discouraged about everything that's going on, it helps me to think that perhaps I might help someone else avoid the same experience by sharing my experience with others. If you're reading this and you didn't know that I have Lyme, surprise! I contracted Lyme disease in 2003 while I spent six weeks with my mom in New England and got bit by a tick. Since then I have had mysterious symptoms, personality changes and debilitating illness which got continually worse until I finally got a diagnosis and started treatment in January 2009.

While Lyme is an extremely complex illness, it's highly preventable and very easy to treat in early stages. If you'd like to learn more about protecting yourself and your family, you can read through my post An Ounce of Prevention. I really hope in sharing this information I might be able to help someone avoid the suffering and frustration that this illness can cause. I started this blog with the idea that I wanted to keep a record of this journey for myself. But I'm hoping that in the process I can hopefully help others.

I've been on treatment for a year now, and sometimes I get really discouraged because I'm not better. When this happens, I have to remind myself that at the outset I was told that I would probably need to be on treatment for several years. It's a long process and I think that's why sometimes I feel overwhelmed. Tonight I was in such bad pain that I couldn't get comfortable. For the past three days I've had severe pain in my chest, along the joints that attach your ribs to your sternum. This morning I woke up with additional pain in the tiny joints in the bones across the top of my left foot, literally feeling as if I had broken my foot sometime during the night. I have also been really off balance this week, having to catch myself on counters, door jams or furniture to keep from falling. Coupled with the grinding fatigue which is an almost daily battle, sometimes it gets to be almost too much to bear.

I am so blessed to have Bryan, who is so patient and kind to me. Tonight he rubbed my foot with muscle rub, then ibuprofen cream, then helped me prop it up in bed so I could try to get comfortable. With the muscle rub on my chest too, I know I stink of menthol, but he says he doesn't mind. I found my rice packs and heated several up in the microwave, and they are helping a lot. One great thing is that I had tons of energy today, which was so NICE. I don't mean to come across as complaining. I recognize there are worse things, AND that I'm extremely lucky to finally have been diagnosed and getting treatment. I'm trying really hard to battle against discouragement and depression, and I'm lucky to have wonderful people in my life who help me do that. It has also helped to try to stay as busy as possible when I am able to. Life is an adventure with lots of challenges, and I think this is the biggest one I've ever faced.

This Week's Update

So, I think I'm getting worse. My fatigue has been so bad I get out of breath walking from my bedroom into my kitchen, and the weakness in my arms and legs makes them feel like they weigh 50 pounds each. I think I am feeling better about all of this than I was last week, for sure. Thank goodness that that's getting better. I am trying to remember what my doctor said about my getting worse before I get better...getting really sick means that the treatments are working! Woo Hoo!! I have another doctors appointment with my specialist in Seattle on Monday, so I may have another update at that point. 

My sister-in-law discovered a tick crawling on her two-year-old's jacket last week, during an outing only a few minutes from their house. Because they are aware of what has been going on with me, they understand the danger associated with ticks. Ticks can be found anywhere there are deer, particularly areas that get a decent amount of rainfall. For more information on how to avoid a tick bite and possible exposure to Lyme, read through my previous post, "An Ounce of Prevention." I am making it one of my personal missions to help other people avoid having to deal with what I'm going through right now. Please take a moment to read through 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.