Day 15: What You Need to Know

Pacific Coast ticks. Photo source: goingslo, Flickr, Creative Commons.

Pacific Coast ticks. Photo source: goingslo, Flickr, Creative Commons.

1. When hiking, try to stick to trails and avoid walking through low bushes and long grass. Avoid tick-infested areas, such as leaf litter under trees. Don’t sit on stumps or fallen logs.
 
2. Try to wear long pants, long sleeves, a hat and gloves. Tuck your pants into your socks.
 
3. Always do a body check after coming in from the outdoors.
 
4. Throw your clothes in the dryer as soon as you come into the house.
 
5. Shower immediately after throwing your clothes in the dryer.
 
6. When finished, do a second tick check.
 
7. If bitten, remove a tick as soon as possible with sharp-tipped tweezers. Gently grasp the tick near its head or mouth. Don’t squeeze or crush the tick, but pull carefully and steadily. Once you’ve removed the entire tick, apply antiseptic to the bite area.
 
removing tick
 
8. Save the tick, seal it in a plastic bag with moist cotton and send it out to Igenex to be tested.
 
9. Do your best to tick-proof your yard. Keep grass short. Clear brush and leaves where ticks live. Use an edger to create a barren zone around your yard. If you must have a woodpile, keep it in a sunny area.
 
10. Flulike symptoms in the summer are typically not the flu. If you are experiencing them, get to the doctor immediately to make sure it is not Lyme disease.
 
11. If you suspect you have Lyme disease, ask your to diagnose you clinically and not to rely on the presence or absence of a bulls-eye rash or positive Elisa and Western Blot tests. These tests are too insensitive to be the deciding factor and thus a negative test does not ensure one does not have Lyme disease.
 
12. If he/she does a test, ask him to do a Western Blot test from the California-based company called Igenex rather than the typical mardx marblot Western Blot.
 
 
Read the following article to see what bug sprays Consumer Reports recommends. The Best Bug Sprays

Day 3: Did You Know?

tickmouth2

The mouth parts of the tick are essential to its survival and quite dangerous for humans. The outside portions of a tick’s mouth contain two moveable palps. It uses these palps to feel across the skin so that it can find the perfect spot. It then punctures the skin using a pair of telescoping shafts equipped with a bundle of fingers armed with hooklike barbs called chelicerae. This bundle of fingers can bend at the joint. Then, like arms bending at the elbows, the bundle bends backward in a series of breaststroke motions. The chelicerae open the skin for insertion of a harpoon-like structure with serrated edges — the hypostome.

Once the hypostome, along with the chelicerae, are inserted, the tick is ready to feed. Since the hypostome has projections that hook backward, the hypostome anchors the tick to the host. This is why the tick can be so hard to remove and why a tiny bit of flesh often exits the host along with the tick when it is removed.

Video showing how a tick penetrates its host

Huffington Post

Spreen, K. (2014-05-06). Compendium of Tick-Borne Disease: A Thousand Pearls (Kindle Locations 869-871). Pocopson Publishing, LLC. Kindle Edition.

Day 2: Did You Know?

tickonbladeofgrass

Ticks find someone or something to feed on through a process called questing. Ticks lay in leaf litter, crawl up the stems of grass or perch on the edge of a plant with their front legs extended. Here they wait until they are stimulated by certain chemicals like CO2 that are exhaled from their prey. They also respond to the heat and movement of the passerby.

Some animals, like deer and humans, apparently, release pheromones that attract the tick. When a warm, exhaling, potential host brushes by, the tick grabs on and settles onto the host. The tick snags the host’s fur, hair, clothing, or skin with its barbed front legs.

Compendium of Tick-Borne Disease

Day 1: Did You Know?

ticklifecycle
 
I thought I would kick off National Lyme Awareness Month by explaining the lifecycle of a tick. Once you understand this, you will understand why May is such an important month in the world of Lyme disease.

Ticks have four stages to their life cycle: egg, larvae, nymph, and adult. Adult female deer ticks lay eggs on the ground in the Spring.

In the summer, the eggs hatch into larvae. Deer tick larvae have six legs and can be as small as the period at the end of this sentence. The larvae find their first host – typically a bird or rodent – and live off its blood for several days. They then detach and fall back onto the ground.

In the ground, the well-fed larvae now molt into the next stage and are called nymphs. Nymphs have eight legs and are about the size of a poppy seed. They lay dormant for several months over the winter and become active again in the Spring as the weather warms up.

The nymph now finds its second host – a rodent, pet, or human – and feeds again. If the tick is carrying infectious agents ingested from its first feeding, it can now transmit these organisms to its next host. If it wasn’t previously infected, the tick can become so now, if it feeds on the right infected animal.

Once well fed, the nymph detaches and falls back to the ground. Here it molts and changes into an adult. Throughout the fall, both adult male and female ticks now find their third host – a rodent, deer, pet, or human – and feed on blood and mate.

Once well fed, both males and females fall back to the ground. The male now dies and the female lives through the winter and lays eggs in the spring, completing the cycle.

 

Compendium of Tick-Borne Disease

Lyme 101: Proper Tick Removal

If you find a tick on your body, it is extremely important to not only remove it as soon as possible but also to do it properly. Here is a good video to best understand removal technique. Please note that tweezers that have sharp points need to be used rather than ones that have blunt points.

Lyme 101: Precautions and Prevention

The best way to avoid long-term consequences of Lyme and tick-borne illnesses is to prevent tick bites altogether. Use the following tips to minimize your exposure to disease-carrying ticks:

    1. Avoid tick-infested areas when possible. Stay in the center of trails, avoiding contact with overhanging grass and brush, while walking in the woods. Trails are less attractive areas for ticks to live than dense underbrush.
    2. Wear light colored clothing, long sleeves and pants, and tuck pants into socks. Wear a hat and tie back long hair to make it harder for ticks to attach to your scalp.
    3. When walking or working in the woods for an extended period, use duct tape wrapped inside out around the ankles to trap ticks attempting to crawl up your legs.
    4. Wear EPA-approved repellants appropriate for adult skin or children. Follow the manufacturer’s instructions for application carefully; some repellants are designed for application to clothes and equipment only.
    5. When coming in from outside activities where ticks may exist, put clothes in the dryer set on high heat for at least an hour. Ticks cannot survive the dry heat. They can survive exposure to hot water, so skip the washing machine and expose the clothing to the high heat of the dryer first.
    6. After spending time outdoors where you might have been exposed to ticks, make sure you get undressed in a dry bathtub so you can spot ticks that fall off clothing. Do a thorough tick check upon returning inside and for several days following exposure.
    7. Immediately shower using a washcloth to knock off any unattached ticks and DO A ROUTINE TICK CHECK on yourself and children.
    8. Check dark, moist areas, hair and scalp, behind ears and knees, elbows, underarms, skin folds and the groin area.
    9. Check bedding for several days following exposure for ticks that drop off.

      Though it may take time to institute tick checks into your family routine, over time it can become as simple as daily tooth brushing.

REMEMBER

    1. Daily full-body tick checks of all family members are your first and most important prevention against Lyme and tick-borne diseases.
    2. If you are diligent about checking for ticks, there is no need to limit or abandon your usual outdoor activities.
    3. Other possible tick-borne co-infections found in our area include bartonella, babesiosis, Rocky Mountain Spotted Fever, ehrlichiosis, and tularemia.
    4. Young children have a higher incidence of Lyme disease than adults due to more outdoor activities.
    5. If you have ever had Lyme disease, you are not immune and may contract the disease again upon re-exposure.

Taken from the website of: National Capital Lyme Disease Association

Lyme 101: All About Ticks

tickthumb_l_d2

What are Ticks?

Ticks are tiny crawling bugs in the spider family that feed by sucking blood from animals. If the animal is carrying Lyme disease spirochetes, the tick sucks them up as it feeds and they multiply in the tick’s gut. The tick may then transfer them into the next animal it feeds on.

Where Do Ticks Live?

Ticks prefer humid environments. Adult ticks climb up grasses and bushes on the edges of trails to wait for an animal to pass by. In hot, dry weather they are less active. Immature ticks are often found in leaf litter under oak trees. Nymphs may climb up onto downed logs.

What is the Tick Life Cycle?

Ticks have three life stages: larva, nymph and adult. To see a diagram of the tick life cycle go to: TBDA. In each stage, ticks feed by sucking blood from animals. Then they drop off, enter a dormant period, and molt to become the next stage.

Most Lyme disease is transmitted by nymphal ticks, which are smaller than a poppy seed in size and easily escape detection. Their bite is painless. The human is at greatest risk in the late Spring/early Summer when the nymph ticks are most plentiful.

What do Ticks Feed On?

Adult ticks feed and mate primarily on deer. You may also find adult ticks on your dogs, horses, and other domesticated animals.

Nymphs feed primarily on smaller animals, including squirrels, mice, lizards, rabbits, robins, starlings. Migratory birds play an important role in distributing ticks throughout the country.

What Kind of Ticks are There?

American Dog Tick–Dermacentor variabilis
The American Dog Tick can transmit Rocky Mountain Spotted fever, Tularemia, Ehrlichia, and Tick Paralysis.

Soft Ticks–Ornithodoros

Soft ticks do not have the hard shell and are shaped like a large raisin. Soft ticks carry Tick Relapsing Fever.

Western Black Legged Tick–Ixodes Pacificus

The Western Black Legged Tick is prevalent on west coast. It transmits Babesia, Lyme disease, Bartonella and Ehrlichia.

Deer Tick–Ixodes Scapularis

The Deer Tick is prevalent on East Coast and transmits Lyme disease, Ehrlichia, Babesia, and Bartonella

Brown Dog Tick–Rhipicephalus Sanguineus

The Brown Dog tick carries Q Fever.

Rocky Mountain Wood Tick–Dermacentor Andersoni

The Rocky Mountain Wood Tick transmits Tularemia, Tick paralysis, Rocky Mountain Spotted Fever, Q Fever, and Colorado Tick Fever.

Lone Star Tick–Amblyomma Americanum

The Lone Star Tick is prevalent in the South West and can transmit Rocky Mountain Spotted Fever, Tularemia, and Ehrlichia, Q Fever and Tick Paralysis as well as Borrelia lonestari, which causes a Lyme disease like illness

Pacific Coast Tick–Dermacentor Occidentalis

The Pacific Coast Tick is prevalent in the West and South West. It can transmit Colorado Tick Fever virus, the Rickettsia of Q Fever and Spotted fever as well as the bacterium that causes Tularemia. Known to cause tick paralysis in cattle, horses and deer. Bite wounds are commonly mistaken for wounds caused by the biting of this tick.

What Kind of Bacteria do they Carry?

One tick bite may transmit over a dozen tick-borne diseases including Lyme disease. The species of bacteria among the tick-borne pathogens are diverse. This complicates diagnosis because current antibody tests are species-specific. 15 tick-borne bacterial pathogens have been identified worldwide, including 3 species of Ehrlichia, and 4 or 5 of B. burgdorferi. Scientists have not identified all of the pathogens that ticks may carry. According to ILADS, there are 5 subspecies of Lyme, over 100 strains in the US and 300 strains worldwide.

Taken from the website of Lyme Disease Organization.

My Lyme Story: Diagnosis

P1010120I was diagnosed with Lyme and multiple tick-borne infections in the Fall of 2010 after a long and circuitous journey. I’d spent seven years trying to get to the bottom of my symptoms and finding a doctor who could help me.

I’m still in the thick of treatment; in fact, I’m just about to embark on an eight-month journey of IV antibiotics — not an easy feat. However, my doctor has advised me that this is the only way to get the Lyme out of my central nervous system (CNS). I admit, I am fearful at times. However, with the encouragement of my God, doctor, family and friends, I remain hopeful I will beat this disease once and for all. My fondest hope is that this blog will help others feel more hopeful and secure as they wade through the oftentimes confusing and political world of Lyme disease!

Some people may already be aware of Lyme Disease. What they most likely do not know is that a tick is almost always infected with more than just Lyme; it is often infected with accompanying co-infections. Worse, it inhabits pretty much every part of your body. Thus, Lyme literate physicians (LLMDs) call this disease Multi-Systemic Tick-borne Disease (MSTD), rather than Lyme.

As I mentioned, the Lyme bugs can carry many co-infection organisms such as Babesia, Bartonella, Erlichiosis, Rocky Mountain Spotted Fever and others. They pick them up in their infancy stage when they bite into their first prey — a mouse or other small rodent, bird, or animal. Thus when treating, it is crucial to have a skilled physician who not only knows how to treat Lyme but also knows how to find and treat all the accompanying co-infections. As Dr. Horowitz, a well-known Lyme specialist, puts it, “If you go to a doctor with five nails in your foot, and the doctor pulls out two nails, and you still have foot pain, it doesn’t mean the treatment was ineffective; it means you didn’t pull out all the nails.“

I am not sure when I first contracted Lyme. What I do know is that I was bitten many times as a kid and adolescent because my family camped several times a year. It was pretty standard that we would pull several ticks out of our heads and legs. From the time I was a young child, I struggled with a monthly recurring flu that even landed me in the hospital a few times. Still, I was mostly fine until August 1994 when, at the age of 27, I suffered a terrible flu characterized by fainting spells, dizziness, and shortness of breath. Having a nurse’s mentality, I tried to ignore it. But I as I quickly grew sicker and sicker,  tuning out these debilitating symptoms became impossible.

Karen Franks at Avon Lea FarmsI went to the ER before ending up in cardiac ICU for about ten days, where my heart was beating at 200 beats per minute (BPMs). I was weak and faint, and every time I moved, my heart rate would elevate again.  The doctors could not figure out what was wrong with me. They eventually decided I had contracted a virus that attacked my heart and subsequently prescribed heart medication. After a month they tried to wean me off, but the rapid hear beats immediately returned. This pattern repeated until finally after about a year, I was able to stop the medication without any re-occurrence or damage to my heart.  While it was incredibly frightening, God protected me. Once over, I didn’t give the experience a second thought.

At the time I didn’t know that Lyme typically starts as a flu, and if not treated soon enough, travels either to the heart, the brain, or the soft tissue. Was it possible I’d contracted Lyme but the doctors didn’t know enough about it to investigate? I cannot say for certain since I was never tested.

While my symptoms disappeared after that harrowing year, Idid experience cyclical flu symptoms. Again, remaining true to my nature I just kept moving forward. I refused to let those sick periods impact my lifestyle. I worked long hours at jobs I loved and spent my free time leading international mission projects, hosting bible studies, traveling, volunteering at church and other organizations, or hanging out with family and friends. They were very good years.

Then on April 10, 2003, while working as a pharmaceutical rep, I fell while visiting one of my neurologists at Riddle Hospital.  I tried to get back up to work but my head was spinning and my vision was impaired. At the ER, I was told I had sustained a concussion.  At the recommendation of another neurologist-client, I went home to rest with little stimulation. Watching TV, using my laptop, or going on the internet were strictly off-limits.  Due to the post-concussive fatigue, visual problems, and vertigo I was having, it was hard for me to leave my house. I did a lot of gardening during this time because I needed to feel productive. I was not used to having so much time on my hands and, quite frankly, I hated it. Now I sometimes wonder if I could have gotten bitten or re-bitten as a result of my actions. I just really won’t ever know.

Cycle 7 protocol

Cycle 7 protocol

The difficulty with Lyme is that when the ticks are in the nymph stage, they are the size of a poppy-seed and can be mistaken for dirt. You would think that when the tick lands on you and embeds its fangs into your skin, you would feel it. But being very smart critters, they anesthetize the area with a numbing agent so you don’t feel a thing. In addition, they emit a type of blood thinner to easily draw your blood into their body. As they do this, they also emit saliva which contains the Lyme and other infections.

Did I experience a re-occurrence from an earlier bite that was never treated or was it actually my immune system that failed as a result of a fall, allowing the existent Lyme to overrun my body? Again, I just don’t know. Sadly this is the case for most chronic Lyme sufferers, hence the reason their affliction becomes chronic. (Chronic means either the infection is not detected during the acute time period, or the symptoms persist beyond this acute stage. This gives the Lyme infection more time to replicate and spread. As a result, it takes longer to treat and becomes more complicated to eradicate.)

Still feeling ill, I went along with my neurologist’s treatment but instead of improving as expected, I got weaker, felt more exhausted and developed new symptoms. My fatigue became acute and unbearable — to the point that just getting out of bed in the morning was a huge accomplishment! I also experienced chills and shivers, especially in the middle of the night and in the morning. The only way I could ease them was to immerse myself in a hot tub. Immediately following, I would head straight back bed because I kept thinking if I just lie down for five more minutes, I’ll feel a little better. Having to get up to make something to eat was exhausting so I went without food for many days. Unsurprisingly, my weight plummeted to 85 pounds. I sought out several different brain specialists for answers, all of whom wanted to put me on stimulants. Since I was hyper-sensitive to medicine, I had strong reactions.

Having now spent six years with traditional doctors who were unable to help me, I researched on the internet and found a fatigue specialist in the fall of 2009.  After almost a year of trying a few unsuccessful protocols, the specialist asked if I had ever been tested for Lyme disease. Since this was the first time a doctor had suggested it, I agreed to the test. On August 17, 2010, the doctor drew my blood and sent it to off to the lab. Although I’d

There's Always something to smileout ab

There’s always something to smile about.

willingly agreed to the test, I was certain I did not have Lyme disease. You see, in my limited knowledge of Lyme, I was convinced that one had to exhibit the “typical” symptoms of a red bull’s eye rash and severe joint pain. It took a month to get the results but — surprise! — the test came back positive. From there, a few more months passed before the doctors decided on a course of treatment.  Finally in January 2011, they prescribed the antibiotic Ceftin.  I agreed, though still unsure of my opinions about Lyme disease.

Thus began my journey of researching and reading everything I could find on the subject. This is also when I discovered that joint pain is only found in some patients.  In addition, only 40-50% of Lyme patients find a migrans rash and, most of the time, the rash is only there in the initial stage when it begins to reproduce and move within the skin. Next, Lyme disseminates from the skin into the blood, lymphatic system, brain, heart, or joints. This is why Lyme symptoms are so diverse. It’s also why Lyme symptoms can change from week- to- week or month- to- month. No wonder it’s so difficult for doctors to test for, let alone diagnose!

While Lyme is still in the skin, antibodies are not going to show up. Even when it has moved into the tissues, heart, and brain, antibodies will still not show up. That’s why there is only a small window of time for the test to register positive. In addition, when Lyme has been in the body a while it tricks the immune system to stop fighting it.  No antibodies are produced, and since the Western Blot is an antibody test, the test comes back negative. Patients get sicker but their tests are negative. Welcome to the confusing world of Lyme disease!

After about a week on the antibiotic my symptoms began increasing while my health continued to deteriorate. Some time later, I discovered that this was due to a herxheimer reaction, which in layman’s terms means there were too many dead Lyme toxins in my body. Given that I’d probably had it for a while, there were a heck of a lot of angry Lyme bacteria being stirred up, fighting against treatment. This doctor was unaware that in addition to killing the Lyme, one also needs to supplement with de-toxifiers to pull it out of the body.  I stopped and took a break through the summer, but inside I felt awful.

I was so lethargic that simply getting off the sofa was an ordeal. My head felt like it was swelling and throbbing 24/7. I kept saying, “It feels like I have an infection in my brain.” It was hard for me to have clothes against my skin due to strange sensations.  The bottoms of my feet were painful, with unsettling tingling sensations. My neck felt stiff. My shoulders ached. My ears were ringing. My body would feel frigid, and I would shiver inside for no reason. I would also wake up in the middle of the night drenched and unable to fall back asleep. My days typically started at 3 a.m. because my body would not fall back asleep once I was awakened by the shivering.

lyme_disease_hidden_epidemic_poster-p228833588305763989t5wm_4001In August of 2011, my dear friend, mentor, and fellow church member Dianne Balch observed my noticeable weight loss and grew concerned about the state of my health. She and her husband asked me to move in with them so they could take me to some doctors who could hopefully get to the bottom of things. Just when I thought my fatigue could not possibly get any worse, it became even more difficult to get up out of bed and take a shower. When I did manage to shower, I had to rest on the ledge (thank goodness there was one!). As soon as I finished, I’d have to lie right down on the bed. Since the thought of blow-drying my hair was overwhelming, I opted for a basic ponytail most days. My balance became a major problem because my head felt like a heavy bowling ball. Whenever I moved it, my balance would be adversely affected. Every so often I noticed I could not swallow. This was not due to a problem in my throat, but rather because my brain was not making the connection.

That fall Dianne and I went to see a few different Lyme literate neurologists. A few of these doctors did other tests and confirmed that Lyme was contributing to my symptoms. That November, I started treatment with a local Lyme specialist. I had to get a PICC line because his main treatment protocol was IV Rocephin. Alas, I got sicker, not better. As I learned more about Lyme, I realized he did not have knowledge on treating co-infections or detoxing the body. Thus, he did not know how to “pull out all the nails.” After a few months of treatment, I wound up in the hospital.

On January 10, 2012, I went to another local Lyme specialist who was known for treating both Lyme and its co-infections. What I hadn’t realized prior to the appointment is that this doctor had recently switched to an herbal protocol, believing in a more natural, holistic approach. After a year on the herbal treatment without much change, I decided it was time to get a second opinion from a national expert.

Karen Smiling2I chose Dr. Joseph Jemsek, my current Lyme doctor, because he is the top infectious disease doctor for Lyme, and one of the few who is trained by the International Lyme and Associated Disease Society (ILADS).  He is known for restoring the sickest and most complicated patients back to health. His office is in Washington, D.C., and people fly in from all over to see him. I had spent so much money and time with local doctors (too many to list), that it was time consult with someone whose life was devoted to getting Lyme patients well.

Unfortunately, there is much conflict over the treatment of Lyme. Guidelines put into place by the Centers for Disease Control (CDC) state that eradicating Lyme requires no more than two weeks to a month. Any symptoms after that are considered post-Lyme syndrome and do not need to be treated.

ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. It believes that treatment must be more open-ended in that the patient is treated until they are well or until symptoms subside.  The goal of ILADS is to provide informational exchange among physicians who treat Lyme and other tick-borne diseases, and to advocate for physicians engaged in such treatment.

The CDC method works well for most that get on treatment right away but does not work for those who aren’t as fortunate to know they were recently bitten.  In spite of ILADS’ ongoing efforts, any well-known Lyme doctor who treats longer for this disease is often scrutinized by insurance companies and can wind up in court to defend his treatment protocol. As a result, many ILADS-oriented doctors in this field leave, or, if they are courageous enough to stay, find themselves with huge legal and medical malpractice bills. In addition, the length of a visit is much longer since their patients are so complicated.

In return, the high cost of treatment for chronic Lyme disease falls on the lap of the patient rather than their insurance company. To make matters worse, there is very little funding for Lyme disease research. Unfortunately, most of these patients are too sick to work yet cannot qualify for disability because they do not have enough work credits. In addition, the parameters for being considered for Lyme disease are extremely stringent. Since many of these patients do not look sick, they are labeled as hypochondriacs and thus left isolated and hopeless. This must change. Lyme patients deserve the opportunity to get well regardless of their financial situation.

My first appointment with Dr. Jemsek took place on March 14, 2013. He and his Physician Assistant read over my lab work, along with the reports about my concussion and Lyme disease protocol. Dr. Jemsek said, “I am sorry you have been through the ringer here. I believe Lyme disease is contributing to your symptoms, and I want to help you get well. I believe you can have improvement with treatment but I do not believe herbals are strong enough to do it. They cause inflammation when they disturb the bacteria. Your symptoms worsen but they are not strong enough to eradicate it.”  I have known patients who have gotten well from herbals so I know it is possible.  But in Dr. Jemsek’s mind, this disease requires a multi-faceted approach with both antibiotics and herbals. I believe him, and am grateful to have a doctor with such expertise.

On May 6 I returned to Dr. Jemsek’s office for my follow-up appointment, where we discussed the best approach for me. Read about my treatment plan here.