Lyme Disease Prevention: 5 Tips to Be Tick Smart

Lyme Disease is no longer a Northeast problem.  It’s a nationwide issue.  While the CDC reports that nearly 300,000 new cases of Lyme Disease are reported each year, I estimate that the number is far greater.  And while I do not advocate staying indoors and avoiding the great outdoors all together, I do recommend that you take a few common sense precautions before, during, and after you head out to enjoy the world around you:

1.     Dress Appropriately

I have watched far too many children and adults camp and hike in shorts, flip flops, and tank tops.  I am always left scratching my head.  Wearing appropriate clothing while enjoying outdoor activities is the easiest prevention tip to follow.

  • Wear a hat – Ticks love to hide in hard to find spots: behind the ears, armpits, groin areas, and in your head.  If you have a dark head of hair, finding a minuscule tick hiding in your mane could be next to impossible.  Wear a cap or camping hat to reduce the risk of ticks meandering about your head.
  • Wear pants – No one wants to wear pants in the summer; I totally get it.  However, your legs are the number one part of your body that should be covered while hiking or camping.  They will likely be the first parts of you to come into contact with ticks as you brush against trees, branches, tall grass, and bushes.  My kids wear lightweight, track style pants or lightweight camping pants.  The advancements in clothing are nothing short of amazing.  Lightweight, breathable, moisture-wicking, SPF certified clothing is readily available to provide both coverage and comfort.
  • Wear long socks – I hate long socks.   I’m the first to admit it.  But ankle socks or peds just won’t cut it while camping and hiking.
  • Tuck your pant legs into your socks – No, this is not terribly fashionable, but it is highly effective.  Case in point, we were hiking a few weeks ago.  When we arrived home we found several microscopic ticks attached to one of my son’s socks.  Had he not been wearing high socks or had not tucked his pants into his socks, those ticks would have likely found a comfy home on his ankle or leg and would have started chowing down.
  • Wear a shirt with sleeves – Even in the hottest conditions, we wear long sleeved shirts while hiking.  We’ve invested in a good quality, lightweight, moisture-wicking, breathable shirt for each of our children.  These shirts allow them to remain cool and covered.  At a minimum, you should wear short sleeved shirts.  Avoid tank tops .
  • Wear appropriate footwear – Flip flops and sandals just don’t cut it.  Opt for hiking boots.  Even putting the tick issue aside, hiking boots are designed for your safety, providing traction, grip, and support over varying terrain.

2.       Stay on the Trail

While hiking, choose to stay on the marked trails.  Often times these trails are maintained by park service personnel.  In addition, with regular foot traffic, these trails stay clear of thick brush, high grass, and overgrown bushes.  Cleared trails provide a bit of space between you and those favorite tick hangouts.  Once you meander off the trail and onto unblazed territories, you will likely be walking through unkempt areas where ticks love to call home.   Grab a trail map and stay on the trail.  Here are some examples of good and not-so-good trails:

Good
Better
Best
Beautiful but not so good.
Really, you’re thinking of hiking here?

 

3.      Use a Good Quality Tick Spray

I am pretty cautious about chemicals.  While DEET is an effective deep woods option, it is also highly toxic.  I’ve avoided the use of traditional bug and tick sprays all together.  A friend of mine recommended a cedar based spray.  We’ve used it for years and it has proven to be highly effective.  It is expensive but so is treating an undiagnosed tick bite.  We use TickShield Tactical by Owens Organics.  I receive NO compensation for this recommendation.  I simply use it, like it, and have found it to be effective.  I recommend spraying both skin and clothing.

 

4.       Strip, Shower, Check

This is our family’s tick check routine.  After a time of camping, hiking, or extended outdoor time,  we follow these three simple steps.

(A)  Immediately go to the laundry room.  Strip down to your underwear, and place all of your clothing into the washing machine.  Look for any obvious ticks on your body.

(B)  Take a shower.  Use a washcloth to scrub.  Wash your hair thoroughly.

(C)  Before getting fully dressed have someone do a tick check.  A secondary person needs to carefully look over the back, neck, legs, feet, toes, head, behind ears, armpits, and arms.   Ticks can be tiny…as small as a pinhead, a fleck of dirt, or a dot on a piece of paper.  Sometimes they can be larger and more obvious.  Look each and every time.  It only takes one missed tick check to miss a tick.

5.     Use Common Sense

Don’t think that it won’t happen to you.  Don’t think that a tick is no big deal.  Don’t think that some people are simply paranoid, crazy tick lunatics.  Don’t think that Lyme Disease is no big deal.  Remember, the people writing these types of posts, the people tucking their pants into their socks, the people being adament about staying on a trail, are often the people whose lives have been forever changed by a single tick bite.  Heed their warning and advice.  None of us want to see anyone of you incapacitated.  An undetected tick bite today can cause debilitation five or ten years down the road.

You can read more posts from Life in the Van regarding Lyme Disease here.  Work from the bottom of the page, upward.


An Inconvenient Meeting

As I mentioned in my last post, my son had found a tick embedded inside of his shoulder.  Try as I might I could not remove the tick.  I was on and off the phone with my husband discussing ways to remove the little pest.  My oldest son was scouring the internet in search of some solution.  We tried tweezers, squeezing, Vaseline, liquid soap; we even lit a match, blew it out, and touched the tick’s back with the hot end.  Nothing.  He was not going to budge.

I thought to myself, “This is absolutely crazy.  How difficult can this be? Why in the world can’t I remove this minuscule little creature?”

Even my husband scratched his head at my seeming inability to do this simple task.  “How are none of these things working,” he asked.

We were both at a loss, and my son was at his wit’s end, so off we were to the doctor.

Frankly and honestly, I really didn’t have time for this today.  We had to do school work…tests…things to do.  We already had had a topsy turvy kind of week.  This visit was not on my agenda today.  I must admit that my insides were a bit agitated by this monkey wrench.  But, this is life, and life has it’s little unexpected, unplanned, inconvenient, tick-in-the-arm kind of moments.

Soon after checking in at the office, my son was called back to see the doctor.  Within ten minutes of that, we were asked to take a seat in the back.  There is a large common area where people wait to have blood drawn, have IV treatments, or like us, wait to see the nurse.  The nurse was quite busy that day, and as we waited, one person after another filed into the common area.

A woman, likely around my age sat next to me.  I nodded and smiled as she sat down.  The nurse quickly popped her head into the room to see us.  She asked us to show her where the tick was and took down some information.  She apologized in advance for the wait.  So my son and I waited, and we waited some more.  Then the woman next to me spoke.  In a few short sentences, she told me her story.

“It’s a good thing you came here to have the doctor remove the tick.  I have Lyme Disease, and it’s caused real problems for years.  I didn’t know I had the disease.  I got pregnant and passed antibodies to my son.  Now, he’s sick.  He’s really struggling, especially in school.  We had him in public school, then moved him to a private school, but he just can’t seem to handle anything.  The school officials think he is faking his illness.  We are frustrated and have decided to pull him out of school to homeschool him.  I’m not sure I can do this.”

And in that moment I knew exactly why I could not seem to extricate the tick from my son’s shoulder.  I realized why a simple task had become impossible.  I realized that the Lord had a meeting arranged for me.  He cleared my schedule to make room for this very encounter.

See, that woman’s story is my story…almost exactly.  I’ve had a little experience with Lyme Disease myself, been pregnant during my illness, passed antibodies along to my kids while pregnant, have one son who is sick and struggling, and, to boot, I homeschool.   Coincidence?  Oh, no.  This was an orchestrated meeting.  No chance or alignment of the stars here.  This was the Lord placing me in specific place, on a certain day, at an exact time, to say a few simple words to someone who needed them.

And with that I turned to her and told her that I understood exactly what she was going through.  I knew of her personal struggles;  I knew of her son’s struggles.  I knew of her apprehension regarding school.  I then briefly told her my story.  She looked at me and said one word, “Really?”

“Yes, really,” I responded.

I introduced her to my son.  She spoke a bit more in depth about her son’s struggles.  She questioned her ability to homeschool.  She was unsure and scared.  We talked about curriculum and such.  She then looked at me and said, “Just tell me that I can do this.”

“Yes, you can do this,” was my simple reply.

And that’s why I was there, to speak words of encouragement to a mom whose shoes I have walked in.  I was put there to show her that she is not alone in her struggles, in her concerns.  My schedule was cleared so that I could have this encounter.

All at once and rather abruptly, both of us went our ways.  She was called into the doctor’s office, and the nurse came in to take care of my son.  We quickly exchanged names.  I asked her where she was from.  “Connecticut.”

Connecticut?  Really?   She had come from two hours away to have this doctor’s appointment in New Jersey?  She had navigated Connecticut, New York, and New Jersey morning traffic?  She arrived when I arrived?

There are no coincidences in life.  They are providential, planned meetings of the Lord to carry out whatever His will may be.

These verses from Proverbs say it best:

The heart of man plans his way, but the LORD establishes his steps.  Proverbs 16:9

Many are the plans in the mind of a man, but it is the purpose of the LORD that will stand.  Proverbs 19:21

The Lord is always at work.  He is not just sitting around casually in heaven as an observer.  He is in control of all things and orchestrates our coming and going.  Oh, how fast we can be to complain or moan or gripe when our best laid plans are disrupted.   How easy it is to become frustrated by life’s inconvenient moments.  We can get downright crazy when delays or setbacks come our way.  Yet, the Lord is in control of all of these things.  He is at work.  His plan is simply unfolding, and you may have the privilege of being part of it.

 

 

 

 

 

 

Letting Down Your Guard

Yesterday morning my 14 year old son came down stairs visibly flustered.  “There’s a tick stuck in me.”  I squinted and strained my eyes to try and decipher what I was actually looking at.  This was a speck, no bigger than a grain of sand or the tip of a pin;  it could easily be mistaken for an ordinary skin mole or a fleck of dirt.  After several minutes I concluded that this little dot was indeed a tick embedded in his shoulder.

Me.  My kids.  We have a history with ticks.

The ironic part of this episode was that just two days earlier I was speaking to a friend telling her that I felt so fortunate that I have never had to pull embedded ticks out of my children.  “The Lord must know that I would not be able to handle it;  He must know that I would get a little crazy.”  Well, fast forward to today.  One child, one embedded tick.  Oh, the irony.

Lyme Disease has just become part of our lives.  It’s what our family lives with.  We’ve become careful and always take precautions.  We have our little routine; we have a dress code when outdoors.  We still camp; we still hike; we still live.  We have our guard up, and in doing so, we have managed to remain tick free.  We’ve protected ourselves and remained vigilant.  But not this time.

I spent nearly an hour trying to gently remove that tick.  Try as I may I could not extricate that little bugger from my son’s shoulder.  Knowing when to stop, I called the doctor and asked them to make room on the schedule for us.  They did.  As we were driving to the office, my son confessed:

“Mom, I was rolling around in the grass yesterday.  I was in shorts and a tank top.  I didn’t change my clothes when I came in.  I didn’t shower.  I didn’t have you check me out.”

That was one of those situations as a parent where not much else needed to be said.  He knew he had dropped the ball on this one.  He had ignored everything that he knew he should do: dress appropriately, change immediately, shower, and get a tick check.

I know, I know.  You’re probably thinking:  “Relax, lady!  The kid was just rolling in the grass.”

Well, we live in tick-central.   Sometimes rolling in the grass is not so cut and dry.  Knowing this, we keep up our guard and are diligent with what we know we should do.  And, when we follow the “protocol”, we can not only have fun, and, yes, roll in the grass, but we can remain safe while doing it.

The problem occurs when we let our guard down, when we don’t do what we know we should.

It’s pretty easy to let our guard down in everyday life.  How simple it is to sidestep doing what we know we should.  We grow tired of the routine.  We feel bogged down.  We want to scream, “I just want to live without having to do this or that.” And then when something unfortunate happens, we want to kick ourselves because we dropped the ball.

Today’s little episode immediately took my mind to this verse:

Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. 1 Peter 5:8

Have you ever watched one of those nature shows where they track a hunting lion.  Hunting lions are rather patient.  They wait for just the right time to pounce.  They scope out their prey and observe.  They watch for that one split second when their guard is let down, and then they seize the moment, and go in for the kill.

That’s kind of what happens when we let our guard down.  It only takes a moment of weakness for things to go horribly wrong.  It takes a tiny little crack in the door for someone to gain a foothold and bring the whole door down.  Satan waits like that patient lion.  He waits for just the right opportunity to bring us down.  He waits for the moment of weakness.  He waits for us to let down our guard, and then he latches on.  That ultra, microscopic tick was the perfect picture of this.

As I walked outside with my husband this morning, I paused and stared.

“What are you looking at?”, he asked.

“The grass,”  I answered.  “Underneath that beautiful green blanket likely hides millions of ticks on our lawn, their lawn, that lawn…everyone’s lawn  There’s really no way to avoid them.  We’ve got to live with them and keep up our guard.”

While it’s too hot to require my kids to play outside in a full snowsuit, or wear a wet suit to romp around in the yard, or dress in a full coat of armor, I am reminded that there is one coat of armor I am told to dress in everyday.  It is to protect me and remind me to be prepared and be on guard.

Finally, be strong in the Lord and in his mighty power.  Put on the full armor of God, so that you can take your stand against the devil’s schemes.  For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.  Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand.  Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place,  and with your feet fitted with the readiness that comes from the gospel of peace.  In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one.  Take the helmet of salvation and the sword of the Spirit, which is the word of God.

And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.

Ephesians 6:10-18

So keep up your guard….and check your kids for ticks too!

Children and Lyme Disease – Part I

Last year I took some time to write about my experience with undiagnosed Lyme Disease.  I’ve decided to dedicate the next few blog posts to discussing Lyme Disease as it relates to children.   It’s one thing when we experience illness ourselves, but it can be downright heart-wrenching to watch a loved one battle illness, especially when that loved one is a child.

The story I want to share with you today is not meant to attack the medical community.  Its purpose is to simply make you aware of some of the misinformation, denial, and utter chaos that exists in the medical community with regards to Lyme Disease.  I will be careful not to exaggerate, but I will paint an accurate picture of my first hand experience with regards to my oldest son’s Lyme Disease.

It was a beautiful summer day, and my children were invited to a friend’s house to romp in the nearby river.  They thoroughly enjoyed their time and gave little mind to anything other than having fun.  The children came home, showered, and headed off to bed.  I had no cause for concern.

Within a few days, I noticed a red ring on my son’s calf.  There was no denying that it looked like the all too familiar bull’s eye rash that can accompany a recent tick bite.   However, upon closer examination, the bull’s eye looked exactly like ringworm.  I did a bit of researching online, comparing my son’s mark to numerous others.  It sure looked like ringworm.

We went to the pediatrician the next morning who agreed that my son had a textbook case of ringworm.  He was given an anti-fungal cream to apply and told that there was no need to return.  We followed the treatment plan, but within a few days, the look of my son’s leg had dramatically changed.  The site was now quite red and inflamed.  We returned to the doctor, who proceeded to change the medication.  The new medication proved ineffective, and my son’s leg continued to grow fiery red.  It began to swell and was now forming blisters in the center of the ring.  My son also was running a low grade fever and feeling sluggish.  It was then that I knew exactly what we were dealing with.

I returned to the pediatrician.  I then remarked how I no longer believed that this was ringworm.  I was convinced that this was a tick bit.  I knew it in my “momma gut”.

The doctor’s response?  “No, it’s not a tick bite.”  He was adamant.

A second pediatrician from the group was brought in.  Her response?  “No, this is not a tick bite.  It is just a severe case of ringworm.”

I replied, “But how do you know just by looking at it?  How about you run some tests?  How about we treat this with some precautionary antibiotics to be careful.”

The answer was, “No.”

No?  Just like that.  No further discussion needed.  No mind given to the concerns of this momma.

I am not a mother who has ever pushed for antibiotics for my children.  To the contrary, I have left them as our last resource when illness strikes.  For me to even suggest precautionary antibiotics was completely out of character for me, and my doctor knew it.  He told me that I was over reacting.  I told him that I didn’t think I was.  I was given a referral to a local dermatologist.  I left the office angry…very angry.

I reached out to the dermatologist’s office to make an appointment.  I was told that I would need to wait two weeks for an appointment.   This was not acceptable, but it was providential.  I explained that I needed my son to see someone within the next day.  I was given an appointment with a new, young doctor.  I wasn’t thrilled, but as I mentioned, the Lord orchestrated it.

Upon arriving at the office, the doctor took one look at my son’s now infected leg and was quite concerned.  She ran a test for ringworm…twice.  Both tests came back negative.   She was 100% positive that this was not a fungal infection.   I then explained to her that I was concerned that this was a tick bite.  She agreed.  However, my son’s leg was so red, inflammed, and blistery, she could not even see what was going on underneath it all.  She prescribed a strong antibiotic to clear the infection.  She told me to come back if there was no improvement or at the conclusion of the treatment.  I felt relieved that someone had taken me seriously.

Within a few days of beginning the treatment, my son’s leg cleared dramatically.  I was now able to see three small pricks in the center of the now obvious red, bull’s eye ring.  I called the dermatologist and told her what I could now see.  She told me to come in.  She too was convinced that this was a tick bite (or three).  She looked at me square in the face and told me that she was the mother of three small children.  If this was one of her children, she wouldn’t even bother to wait for a test to confirm Lyme; she would treat it immediately with antibiotics.

That was music to my ears!  And so, my son began his antibiotic course.

We were slated to return to our pediatrician for a follow up visit.  I told him about our visits and tests with the dermatologist and the subsequent administration of antibiotics for a suspected case of Lyme Disease.  His reaction shocked me.  He was furious.  Furious at the dermatologist.  Furious that my son was given antibiotics.  Furious that no test was run.  Furious that she thought that this was a case of Lyme Disease.

I was confused.  This was coming from a man who refused to test my son.  A man who refused to entertain the notion that maybe my son had been bitten by a tick.  A man who refused to look at my son’s collective symptoms:  low grade fever, sluggishness, and a bull’s eye rash.  This man refused to believe that this was a tick bit.  I assured him that I had the best interest of my son at heart and felt comfortable with the course of treatment.  I was flabbergasted and angered beyond measure.  I called my husband from the car and cried.

My son continued taking his medication.  His fever subsided and within short time the fatigue he was feeling completely disappeared.  However, something quite strange was taking place on his leg.  While the bull’s eye rash was dissipating, his skin at the site was blistering, oozing, and breaking.  I must admit, sometimes I allow my mind to wander to the worst case scenario too quickly.  I envisioned that my son had contracted some rare flesh eating bacteria that was eating away his leg.

To calm my fears and my son’s, we returned to the dermatologist.   She looked at his leg and had no cause for concern.

Yet another week elapsed with my son’s leg only growing worse.  In tears, my son told me for the first time he felt scared.  I knew we needed to find some help.  I called the dermatologist’s office and requested an appointment with the main doctor.  I was told that the first available appointment was not for another week.  I had them pencil our name in.  I then went to work on finding a way to get that appointment moved up.  I returned to the pediatrician’s office and showed him my son’s leg.  He agreed that it needed attention.  He made a phone call and informed me that my appointment at the dermatologist was moved up to tomorrow.

The lead dermatologist examined my son’s leg.  He then proceeded to take a biopsy of the area.  He informed me that he would call me personally once the results came back.  Within a few short days I received his call.

The doctor told me that the biopsy showed that there was foreign DNA found in the tissue sample.  He said that it was likely from bedbugs.

Take a moment to digest that.

You have got to be kidding me.  You can’t make this stuff up.  I told the doctor that it would not be an unlikely scenario to have foreign DNA from, let’s say, a tick, would it?  When ticks latch onto a host, they burrow into the skin.  When they are pulled, wiped, or swatted off, some of those parts can remain in and under the skin.  Also, when ticks feed on a host’s blood, they regurgitate the blood back into the host, however they add some of their own bacteria to the mix for the return trip.  After I explained all of this to the doctor.  I repeat, after I explained all of this to the doctor, then reminded him that my son had had a bull’s eye rash, fever, and fatigue, he still stood with his original assessment.  Bed bugs.

I went home, and like a stark raving lunatic, stripped my children’s room.  Sheets, blankets, curtains, pillows, clothes…you name it.  Then once the beds were clear, I investigated my son’s pillow and mattress carefully.  All was spotless.  My son shared a bunk bed with his younger brother at the time.  I examined his bed.  All was clear.  I then stopped and realized that there was no bed beg problem.  Right around the same time I received a call from my pediatrician.  He asked me if I had spoken to the dermatologist.  I told him that I had.  He proceeded to recount the dermatologist’s findings.  I then calmly, yet sarcastically, proceeded to ask several questions of my pediatrician:

“Is it possible that the bed bugs in question are so highly intelligent that they come out each night and congregate at the same spot on my son’s leg?”

“Is it possible that they find no other part of his body remotely appealing?”

“Is it possible that the bed bugs in question, who apparently reside in my son’s top bunk, never venture to the bottom bunk to bother my other son?”

“Is it possible that these bed bugs have isolated themselves completely from all other family members?”

“Does any of this seem plausible to you?”

He answered that it seemed unlikely.  I told him that it was IMPOSSIBLE!  I told him that the foreign DNA found in my son’s biopsy was not from bed bugs; it was from a tick.  I didn’t care what he said to the contrary.  I really didn’t want to hear it.  He had not been an advocate for my son; I had.

It would take nearly two and half months for my son’s leg to clear.  After much personal research I discovered that some individuals can have a severe reaction to a tick bite.  Blisters form as the body tries to rid itself of foreign matter.  It was my son’s situation in every way.

Thankfully, my son was treated relatively promptly after his initial tick bite.  Time is of the essence when dealing with Lyme Disease.  The longer you wait, the further the disease sinks into the body.  The further it sinks into the body, the harder it is to combat.

My son’s story is a good one.

There are still some doctors out there who discount Lyme Disease.  I experienced it first hand.  If you take nothing else away from my son’s story, please know that you must be an advocate for your children.  You must be persistent.  You must research.  You must be knowledgeable.  And, at times, you may need to be a bit fierce and put your foot down.

To close, after that episode with my son, I tested my children annually for Lyme Disease and continue to do so.  One year after the tick bite, he tested positive for antibodies.  His infection was not current, but one that was in the past.

 

 

 

Lessons from a Lymie!

Before we start today, let me toss out my little disclaimer:  The information found here is not a substitute for medical care.  You should always consult a qualified physician regarding any of your healthcare concerns.


Thank you for reading last week’s posts regarding my experience with Lyme Disease.   I can’t begin to tell you how good it was for my husband and me to read through them together.  There’s no doubt that we went through quite a lot, but we can see how the Lord was working during this time.  Sometimes it is hard to see that when you are in the midst of what seems to be a mess.

Today I hope to encourage you to be an advocate and fighter.  It doesn’t matter if you are struggling with Lyme Disease, cancer, or MS, you need to stand up for yourself and your loved ones.  You must educate yourself.  You must be a rock turner.   You must have a voice, and at times, a loud one.   Put fear aside.  Throw worry out the door, and stand up for yourself.

There is really no rhyme or reason to my post; it’s just a collection of thoughts.  Here goes:

1.   You Know Yourself Best

You know when you are not feeling like yourself.  You know when something is “off” or if you feel ill.  There is no one on the outside who can tell you how you are feeling on the inside.  That will only come from you.  Should a physician or two or three tell you there is nothing wrong, find someone new.  Find someone who will truly listen to you.  Find an advocate.  The list of doctors that I visited was rather long, but I finally did find one who helped.  It took some time.  Be persistent and do not give up!

2.  Early Detection + Early Treatment = Good Prognosis

With regards to Lyme Disease, early detection and prompt treatment are key.  This may be the area that frustrates me the most.  Time is of the essence.  If Lyme is treated early, most people’s symptoms resolve themselves, health is regained, and your Lyme story becomes a boring one (this is good).  The longer that Lyme is allowed to fester, the deeper it burrows into the body, the worse the symptoms get and the harder it becomes to eradicate.

The responsibility for prompt treatment is two-fold.  First, you must not ignore what your body is telling you.  Obviously, if you see a tick embedded in your skin or if a bull’s-eye rash is visible, get tested. and possibly treated.  Do not wait.  If there is no sign of a tick bite or any evidence of a rash, yet you are feeling flu-like, rundown, tired, achy, and just lousy, go to the doctor and get tested.  Demand a test.  We all feel discomfort for a reason; our bodies are telling us that something is wrong.  Do not ignore what your body is saying.

The other part of the equation falls on the medical community.  I warn you; there are physicians, not all, but some, who do not find Lyme to be a legitimate problem.  Here is my oldest son’s experience:

My son was at a friend’s house romping in the river.  A few days later we saw what appeared to be ringworm.  I took him to the pediatrician, and he agreed; it was ringworm.  We were given a topical treatment, however, within a few days the spot on his leg was growing and looking rather “angry”.  I took him back to the pediatrician who said that he still believed it to be ringworm.  He gave me a new medication.  Within a few days, the leg was worse and now my son was running a low-grade fever.  I returned to the doctor and told him that I thought it was a tick bit.  His response?  Nope.  It couldn’t be a tick bite.  He even brought in another pediatrician and her conclusion was the same.  I looked at them both and flat-out told them that I thought they were wrong (by the way, this will always earn you brownie points with a doctor, sarcasm added) and that it was indeed a tick bite.  They sent me to a dermatologist who took one look at my son’s leg and exclaimed that it looked like a tick bite. She ran a few tests for ringworm.  They were all negative.  She immediately wrote me a prescription for an antibiotic.  She explained to me that she was a mother as well, and this would be exactly what she would do for her children.  We followed up with the pediatrician who was livid that the dermatologist had put my son on antibiotics.  I remember looking at him rather dumbfounded.  We live in an endemic area; why was he refusing to even think that Lyme was a possibility?  I still don’t know the answer because we don’t go to that pediatrician anymore.

Some doctors are more educated than others about Lyme.  Search them out.

3.  Testing and Interpretation

Testing for Lyme Disease is highly unreliable.  Over the course of fourteen years, I must have had nearly fifteen tests for Lyme and its coinfections.  All but one, the last one, came back negative.  Standard lab tests yield false positives and false negatives.  There are several different labs that offer higher level, more accurate tests.  They tend to be expensive and are often not covered by insurance.  Ultimately, I found it necessary to seek out these alternative labs, but I did so only through the recommendation of a trusted medical physician.  I would not seek out these labs on your own because there are some out there that are simply looking for your money.

Most testing results are focused on what are called bands.  The CDC has set the standard for what is deemed a positive test result.  A certain number of positive bands are required.  Most doctors will use these parameters.  I’ve always had concern in this area.  If five of ten bands are needed for a positive result, what happens when someone has four bands?  In my mind, four bands shows me exposure, significant exposure.  Do we simply wait to see if the fifth band will pop up down the road?  I just think this is dangerous medicine because again, time is important.  There are other doctors who are not so concerned about the number of positive bands but instead which bands are positive.  Research has shown that specific bands (which are numbered) are telltale markers of a tick-borne infection.  I know that my doctor is more concerned about the specific positive bands.  She takes this information and matches it up with a patient’s symptoms to make a diagnosis.

4.  Treatment

In dealing with Lyme within our family, our first, preferred method of treatment was oral antibiotics.  For some whose Lyme was caught early, this course of action was sufficient and effective.  Again, this is why early detection and treatment is vital.  In my case, however, antibiotics alone were not effective.  I had had Lyme for so long, the chance of eradicating it completely was slim to none, not impossible, but certainly difficult.  Many opt to treat themselves with long-term oral or IV antibiotics.  For some this is effective.  Others prefer to treat themselves through homeopathy and herbal remedies.  There is a whole host of other treatment options.  Some are legitimate; some are not.  Some are safe, and some are not.  Here is where you will need to do your most research.  I would recommend not rushing into anything.  Not all treatments are effective for all people.

5.  Eat Well

Sugar feeds disease.  It becomes the fuel that allows it to thrive.  It weakens your immune system.  Clean out your diet.  Get rid of the sugar.  Get rid of the processed foods.  Stay away from artificial ingredients and chemicals.  Begin to nourish your body through whole foods like quality protein, fresh vegetables (organic if you are able), low glycemic fruits, and plenty of water.  Limit your carbohydrates.  Eat a rainbow of colors, especially nutrient dense leafy greens.  Eating well will only help you.  A poor diet is certain to weaken your body further.

6.  Prevention

There are some very basic things that you can do to lessen the likelihood of a tick bite:

  • When spending time in wooded areas, dress appropriately.  Wear pants.  Tuck the bottoms of your pants into your socks.  It’s not terribly fashion forward but so what!  Wear lightweight, long sleeves.  Wear a hat or cap and closed toe shoes.  You don’t have to wear full body armor, but do use common sense.  I cringe every time I am hiking and see people in the woods in shorts.  I’ll just come out and say it:  that’s just plain stupid!
  • If you are able, opt to stay on paths and avoid hiking in dense, wooded areas.
  • Shower immediately when returning from time in the woods or other high risk areas.
  • Put your dirty clothes in the wash immediately.
  • Have someone give you a tick check. Don’t forget to check your hair.
  • Always check your children for ticks.  Some ticks are as small as a poppy seed.  You must look carefully.
  • Some people use tick specific bug spray.
  • Don’t assume that it is too cold for ticks to be present.  The threat of a tick bite is present during all seasons.

7.  Share and Ask for Help

Here is the area where I made some of my biggest mistakes.  I kept my Lyme to myself.  For years I told no one.  I wanted to press on as if nothing was wrong.  I went to church, led up our co-op, and continued to live life as normal.  When I went out I would try to make everything appear normal.  I bet there are a few of you who know me, who had absolutely no clue what was going on with me.  How could you?  I never said anything.  Why did I do that?  It’s a simple one word answer.  Pride.  I have always been a self-sufficient person.  Asking for help is not a strength of mine.  Looking back I realize that help would have really been beneficial.

Also in not telling people, I didn’t have any prayer support.  Now that was really dumb on my part!  Why in the world wouldn’t I want that?  After my trouble in Williamsburg, I finally told one of the pastors at my church that I needed prayer.  I explained that I needed a respite and that I needed people to really pray for me.  Guess what?  They did, and I could tell.

Don’t keep your troubles to yourself.  There are people who are willing to help out, but they won’t know your needs until you tell them.  My name still remains in our prayer bulletin at church, along with a growing list of others dealing with Lyme.  There have been times that I have thought about having my name taken off the list because I am feeling markedly better.  That is a momentary thought; then I realize how silly it would be to do that.  I still need people to hold me up in prayer!

8.  Faith

I honestly have no idea how in the world my husband and I would have survived this experience had it not been for our faith in the Lord and our relationship with Him.  I can’t say that we completely understood the Lord’s purpose in it all, but we firmly believed that nothing befalls us unless the Lord has a purpose in it.

Some of you might ask, “What kind of God is that, that would allow you to go through what you did.  That’s not love; that’s cruelty.”  I would wholeheartedly disagree.  I have found that it is through the most difficult times in life, that the most growth happens.

I learned some very valuable lessons through my Lyme Disease that otherwise I may have never learned.  I not only learned, but saw the hand of the Lord direct us, answer prayer, and provide for us.  I realized how deep seeded my pride was.  I also saw what a gem my husband is.  I knew he was just the right guy for me, but that was really hammered home during this time.  There are some men who would have jumped ship.  He stood strong.  I always tell him that he has had to live out his marriage vows.  “For richer or for poorer”….well we’re living for “poorer”.  “In sickness and in health”….we’ve spent most of our nearly eighteen years of marriage in sickness (I just realized that).  “Til’ death do us part”…well, we came kind of close to the death part.

God is good in all situations.


This concludes my public service announcement regarding Lyme Disease!  In all seriousness, the discussion regarding Lyme should never end; there are just too many people sick for that to happen.  I would hope that funding for research would increase and that answers would be had.

I will continue to add Lyme specific posts from time to time.  Thanks for reading!

Lyme Disease Part IV: Finding Normal Again

Continued from my previous posts:  Lyme Disease I, Lyme Disease II, and Lyme Disease III.

Sickness and deterioration had become the new norm for me. It had been so many years since I had been normal that I plum forgot what normal actually felt like. But that would soon begin to slowly change.

There are people who show kindness, and then there are people who open up their heart to you and love flows abundantly. How fortunate I was to have a friend who not only opened up her heart to me but her home as well. We both embarked on a new journey to treat our Lyme Disease. I would make weekly visits to her home and spend roughly three hours completing a treatment and a “sweat session” in the sauna. I would tuck myself away in a spare bedroom, but I was still there, in their home. Some people may be able to put up with this for a few weeks or even a few months, but how about a year or two? Well, this dear friend and her family did just that. I’ve lost track of exactly how long I made my trips to their house, but I can estimate that it was close to two years. Now that is love in action. That is bearing one another’s burden. That is showing the love of Christ. I know you are reading this, friend. Thank you just doesn’t seem adequate!

Slowly, bit by bit, I was regaining strength and sanity. As I would sit through the therapy I would feel my body ache and groan and would watch my muscles shake. Something was certainly going on. There was a fight going on in there. Finally! I experienced significant die off in the first few months. This can be bitter sweet. Die off typically makes your symptoms worse temporarily as your body rids itself of the toxins. But in a way, I welcomed it. I knew that despite feeling terrible, good things were happening. Those spirochetes were dying!

During some of my visits I would chat with my friend about her experience out in Arizona. Although she was there for cancer treatment, the facility had discovered her Lyme Disease as well. They were doing amazing work making people well again. She encouraged me to think and pray about going out there for a consultation. They would be able to better assess my condition and run much more advanced lab work. I told my husband about it; he was all for it. However, we simply did not have the financial resources for such a trip. We had exhausted nearly all of our savings and the money we had set aside to buy a home; we were carrying some debt as a result of all the doctor visits, lab work, tests, and treatments. Lyme disease had ravaged our finances which, by the way, is a very familiar story with Lyme patients. To travel to Arizona we would need to fly and there was no way I was going to fly clear across the country by myself. I had a hard enough time trying to get out of Williamsburg in one piece! We prayed about it, but I will admit, I didn’t think it would ever happen. In hind sight, I didn’t trust the Lord. “Oh ye of little faith!”

A few weeks later we received a very interesting phone call from my brother-in-law. It went something like this:

“Dad (my father-in-law) has decided that he wants to take a family vacation.
He wants to go out to Arizona to see the Grand Canyon, and he wants to
take the entire family out…kids, spouses, and grandchildren included. He’ll
pay for everything: airline tickets, car rental, and a house rental for all
of us.”

Say what? Surely this was some cruel joke. See, my father-in-law has never, and I mean never, taken a vacation anywhere…in his entire life. Not only that, but he’s going to pay for fifteen of us to make this trip? This was insane! Nope, it was the Lord, and nothing is impossible for him. So we worked to plan our trip to Arizona. We booked our flight out a day before everyone else would arrive. We would fly into Phoenix, stay overnight, and have the consultation with the doctors the next day in Scottsdale. We would then drive up to Flagstaff to meet up with everyone. Our only expenses would be a hotel room for one night and $150 for the consultation. This totaled about $250.

I spoke to the doctors out in Scottsdale a few times before our visit. To save time they encouraged me to try and arrange for the required blood work here at home, then bring the results with me. This sounded easy, but the tests they were requesting were not from ordinary labs. These were specialized tests. As I prayed about what to do, I remembered the last doctor I saw. She was an integrative doctor meaning she treats ailments both traditionally and holistically. She hadn’t helped me with my Lyme, but I felt that I should see her again.

When I arrived for my appointment, I explained everything I had gone through yet again. I told her about the facility in Arizona and the tests they wanted to do. Then, something amazing happened. She put her hand on my shoulder and apologized. As she reviewed my records, she commented on how she had done nothing to help me during my previous visits. She told me that, at the time, she was simply uneducated about Lyme. Now, she knew that she could no longer ignore the flood of sick patients coming to her.  Their ailments were perplexing, yet all too common for her to just turn a blind eye to. She had resigned herself to study Lyme and help her patients. Wow! She agreed to arrange for all the tests that I needed. She would call the labs to request the needed kits and would get me the results.  Wow! Wow!

Within a few weeks all of my lab work was completed, and we were packed and ready to go. Before leaving we popped over to my neighbor’s house to tell her a few things. Before walking out, she handed me something. “Use this.” was all she said. I walked out the door, opened my hand, and counted $300. Wow! Wow! Wow! That money paid for our hotel room in Phoenix and my consultation with the doctor. “Oh ye of little faith.” That was me. I had had little faith in the Lord, but look how he had provided. Aside from food, we wouldn’t have to spend one single dollar of our own money for this trip. Is that amazing or what!?

We arrived in Phoenix and made our way over to Scottsdale the next morning. The doctor looked over my blood work and for the first time in nearly twelve years, my blood work was not normal. Lyme was confirmed as was CMV (Cytomegalovirus), and EBV (Epstein Barr). My numbers were pretty high. He discussed a few treatment options and educated me a bit more about Lyme.  He felt as though I was on the right path with my treatment, and encouraged me to stay with my current doctor.  From some of the information she had included with the results, he felt that she was educated and quite literate regarding Lyme Disease.  Then he said something very sobering, “Go home and get your kids tested.” My kids?

I had been pregnant with two of my three boys during this time. He recounted how several studies had shown that Lyme could be passed along in utero. My husband and I looked at each other. We assured him that we would take care of it immediately. And, we did. When tested, both boys showed the presence of antibodies. They had both been infected at some point. I can’t say whether it was a result of pregnancy or simply from being infected by a tick. I have to admit that this was a bit difficult to accept. At that point, both boys did not display symptoms and the infection was not active. In time, that would change, but we’ll leave that for a future post!

Recovery was slow and steady. I’d experience some bumps and minor setbacks along the way, but I continued to improve. I was once again finding normal. Normal is a nice place, and I’d like to stay here for a while! I still continue my weekly treatments but no longer at my friend’s house. Why? Well, the Lord also saw fit to provide the equipment I needed to treat myself at home.

Today, the majority of all of my symptoms are gone. Some of the effects still linger and may never fully go away, but they are minor compared to what I experienced in the past.  My brain is not as sharp as it used to be.  I still trip over names a bit and my short term memory falters occasionally (I’m also now in my 40’s, which doesn’t help).  Through testing my doctor discovered that my adrenal glands are shot from the years of constant physical sickness.  I have a tremendous amount of weight to lose, which has proven to be difficult.  I have become keenly aware and in tune with my body, and I know when something is flaring.  I try to jump on it right away and hit it hard.  I now have a doctor that is educated and advocates for me.

Am I cured? Completely healed?  Rid of all the spirochetes?  I can’t say.  But I can say that the Lord has seen fit for me to experience wellness again, and I praise Him for it.

Over the past few years I have read about and researched Lyme quite extensively.  It truly is a rather “smart” disease.  It’s symptoms mimic that of numerous other diseases and ailments.  The spirochetes have the capability to hide, protect, and change in order to thrive within the host’s body.   The current laboratory tests are weak and highly inaccurate to say the least.  More specialized tests are available, but they are wildly expensive, often not covered by insurance, and unknown to most “regular” doctors.  I believe that Lyme Disease and its coinfections are still a mystery to most.

In my final post, which will go live on Monday, I want to offer up some warnings and information about Lyme.  You yourself must be educated because not every doctor is.  I will also highlight some of the lessons that I have learned along the way,

Lyme Disease Part III: Rock Bottom

A continuation of my previous posts Lyme Disease Part I and Lyme Disease Part II.

With one year of care with my “alternative” practitioner under my belt,  good things were happening.  I had more energy, could breathe better, and was gaining back some of my lost cognitive skills.  My twice weekly appointments were reduced to weekly then monthly appointments.  It was a welcome relief.  Each round trip of two hours was a white knuckle experience on the highway.  I would pray my way there, and pray my way home.  Each visit would yield a goodie bag full of supplements and herbal remedies, and a bank account that was diminishing at an alarming rate.  My husband would remind me constantly that he would rather be broke and have me around, than be a single dad with a healthy bank account.  I can not begin to tell you what a blessing this man was and is to me!

Unfortunately within a few months my health took a backward turn.  All of my old symptoms returned and brought along some new friends to the party as well.  I was frustrated beyond belief.  I increased the frequency of my appointments, but at this point, it seemed as if everything I tried was fruitless.

I am thankful that we don’t have the ability to know what awaits us up the road.  Had I known what was about to occur over the next few months, I may have likely opted to dig a hole and hide in it.  In addition to all of the previously noted symptoms I was experiencing, I now was having issues with my heart.  I would experience episodes where my heart would race.  I’d sit there and take my pulse and cringe as I saw some really high numbers.  Then there were times when my blood pressure dropped and my heartbeat was faint; I would teeter on the edge of passing out.  I would lie in bed most nights listening to the sound of my heart reverberating in my ears.  I would be awakened by huge spasms and startled out of a sound sleep by a heart that was beating at twice its normal speed.

It had gotten to the point that I dreaded heading off to bed.  It had become the scariest part of the day.  I knew that I needed to try to sleep, but when I would lie in bed I became keenly aware of everything that was going wrong.  At least during the day I could attempt to keep myself occupied and force myself to think of other things.  But at night, there was nothing to distract me.  I could hear each attempt to take a full breath.  I could feel all the twitches and spasms.  I could see all the spots and flashes that filled my field of vision.  I could feel my pulse throbbing.  I would clutch my pillow and pray.  I would curl into a fetal position and cry.  And for the first time in all of my life, I contemplated my own mortality.  During the quietness of the nighttime hours, I thought about dying.  I would lie next to the man I loved and imagine my side of the bed empty.  I would envision my children growing up without a mom.  Reality was settling in; I was not sure how much more my body could withstand before I had a heart attack or stroke.

Not many people know this, but in the weeks to come I made preparations of sorts.  I began to compile a binder full of my family’s favorite recipes.  I typed out instructions and phone numbers.  I compiled account numbers in one place for my husband.  I increased my life insurance policy.  I made a gift pack for each of my boys.  It included a Lenox snowflake Christmas ornament, our favorite family book, and a few other odds and ends for them to remember me by.

The only thing that sustained me was my faith.  I knew that the Lord held my feeble life in His hands.  He brought me into this world and would take me out of this world in His time.  I honestly didn’t think it would be this early, but then again, not many anticipate an earlier than expected exit.  In my heart I knew that if He chose to take me, He would also care for my family.  I wasn’t scared of dying because I held onto the knowledge and promise of where my eternity was.  I was mostly broken-hearted thinking about my family.

With these thoughts in my head, I returned back to my primary care physician (my newer one).  She sent me to a cardiologist.  He wanted to put me on Beta-Blockers and Nitroglycerine, but I declined.  He sent me home with a heart monitor, only for the results of that test to come back normal.

I proceeded to talk to my alternative practitioner.  He gave me some new liquid remedies to try.  Thirty drops, twice per day were the instructions.  The next day we were slated to take a much needed vacation to Williamsburg.  A friend allowed us to use their timeshare, and with all that was going on, it seemed like a good idea.  Cue the foreshadowing.   We arrived and got settled.  The next day we went to the Jamestown settlement and The Yankee Candle Factory.  While at the candle factory, I began to have a very difficult time breathing.  I asked my husband if we could leave.  The drive to our condo was no more than 10 minutes, but within those 10 minutes I experienced near breathlessness.  With each attempt to breath, I became more and more anxious.  When we pulled into the driveway, I stepped foot out of the car and saw everything around me go black.  I hurried inside and gasped for breath.  I sat on the edge of the bed, my horrified children in the doorway as onlookers.  My husband called 911.  Off to the emergency room for me.

They stabilized me, ran bloodwork, ordered CAT scans, and took my history.  Someone had enough presence of mind to grab my goodie bag of supplements.  Everything I was taking was recorded.  My nervous system was such a mess that I could hardly sign my name.  Like every other story I’d heard from every doctor, I was told that nothing major wrong with me.  My potassium was low, and I had a minor urinary tract infection.  I was given a very strong antibiotic.  Before I left, the doctor held my goodie bag and warned me about supplements.  I didn’t have the energy to tell him all that I had been through, so I nodded.  I agreed to stop taking them.  We headed back to the condo, I took my second round of the antibiotic and fell soundly asleep.

When I awoke an interesting thing happened, I could barely move.  I know now what I didn’t know then; I was experiencing “herxing” or “die off”.  This occurs when the Lyme spirochetes are killed.  They release toxins and make you feel quite crummy.  Whatever antibiotic I had been given, it was working on the Lyme.  This was good news.

We returned home and I felt “with it” enough to really start researching.  The first item up for examination was this new remedy I had been taking.  Come to find out that the maximum dosage per day is three drops.  Three.  I was told to take thirty drops, twice per day.  You do the math.  It’s only by God’s grace that I am still around because the side affect for overdose is listed as cardiac arrest.

I completed my prescribed antibiotic and was feeling markedly better.  Not long after, a dear friend of mine discovered that she had Lyme Disease as well.  Doctors had discovered this while she was being treated for cancer out in Arizona.  She returned home with her doctors’ recommendations for treatment.  Part of that treatment was a noninvasive, non-medicinal treatment that had proven to be effective in zapping and killing the spirochetes.  I was very familiar with this protocol.  I knew it was effective, but we were just not financially able to afford the purchase of the required equipment.  She proceeded to tell me that she was all set up for treatment not only for herself but for me as well.  Such kindness would prove to be life changing and would finally be the turning point for me.

Next up:  The Sun Begins to Shine Again!

Lyme Disease Part II: The Depressed Hypochondriac

A continuation from my previous post: Lyme Disease Part I:The Slow Deterioration….

With my health slowly deteriorating over the span of seven years, I had visited my primary care physician more then a few times.  However, seeing his wife in clear distress, my husband requested that I return back to the doctor for yet another evaluation.  I did.  I recounted to the doctor the long list of ailments that had been plaguing me, adding a few new ones like intense stomach pain, often leading to me doubling over in pain in bed, acid reflux, and what I deemed a rather strange problem, sensitivity to light.  Being in the sunlight was pure torture.  I could hardly open my eyes fully.  It felt as if someone was standing a foot away from me shining a flashlight directly into my eyes.

The doctor made his notations, ran some blood work, and told me to come back for a follow up.  At my follow up visit the doctor explained to me that everything was normal.  For the first time I asked if Lyme Disease could be the culprit.  A clear “no” was the answer.  I had never had a bull’s eye rash, and at that time, such a rash would clearly point to Lyme, but without it, doctors were not open to the possibility that Lyme could be present without it.  Becoming slightly desperate for answers I pressed the doctor.  He mentioned that it could be a hormonal problem, but he honestly said he wasn’t sure what was going on.  He handed me a referral to a rheumatologist.   I made my appointment, provided my ever growing health history, and had a new series of testing done.  My follow up visit showed that all of my tests were normal.  There was nothing wrong with me.  He suggested that I return to my primary care doctor, advice that I promptly ignored.

By this time, my body was so tired and my head so foggy, I spent much of my time in bed or lying on the couch.  I had all that I could do to make meals and take care of the kids.  The fatigue was so great that I could no longer walk up the stairs upright.  I begin to literally crawl; I made sure to avoid going upstairs all together if I could.  Old symptoms continued to intensify, while new symptoms continued to emerge.  I would break out into cold sweats in the middle of the day.  My body would shake for no apparent reason.  My face would twitch nearly constantly.  My jaw would literally lock up while I was sleeping, causing me to jolt awake when my teeth would crash together. Noise, not a ruckus, would be too much for me to bear.  Just the sound of my kids talking at the dinner table was too much to handle.  Their laughter was so intense that I had to leave the room.  I couldn’t listen to special music at church because a high note would send me spinning. What in the world was happening to me?

At a well visit for one of my boys, I desperately told the pediatrician what I was going through.  I had an excellent rapport with him and had known him for years.  I trusted him and valued his opinion.  He promptly told me that I was likely depressed.  I asked him if he had ever seen me in a depressed way at any of our visits.  “No.”  I became a bit indignant and told him that I was sick, not depressed, and left.  For the first time, I remember going home from that visit and crying.  I felt as if I were losing control and resigned myself to return to the doctor one last time.

This doctor’s visit was different.  I was rather forceful.  There was no one advocating for me and soon I began to realize that I had better step up.  I demanded that the doctor do something.  He gave me a round of antibiotics, I believe to shut me up, and questioned whether I was depressed.    With tears in my eyes and my children sitting with me, I quietly told him that I was not depressed, I had no reason to be depressed, I was S-I-C-K, and frankly, I was beginning to feel like I was losing my mind.  He walked out without a word.  The nurse entered the room with the prescription in hand and saw me crying.  I’ll never
forget her exact words: “Honey, you’ve got three little boys; you’re just tired is all.  Lose some weight; get some rest and you’ll feel better.”  Like a knife to the heart.

I took the ten day course of antibiotics and a light bulb went off.  Each and every time I took an antibiotic, I felt better, albeit temporarily better, but better nonetheless.  There was something bacterial going on here because if there weren’t, I wouldn’t see any improvement.  For some reason Lyme Disease kept coming to mind.  I feebly began doing research.  I also sought out a new doctor.  I made an appointment with the new doctor.  It was refreshing to have a physician listen to me.  At the end of our time she told me that she believed there was something going on.  She ran a lot of blood work, we’re talking nearly twenty vials of blood.  I know you know what I am going to say next:  everything was normal.  All of it.  From my sugar, to my cholesterol, to my liver, no sign of Lyme disease…nothing.  She told me to come back if I needed to.

Within a few months I noticed that my new symptoms were now scary symptoms.  I could no longer breath normally.  I couldn’t take in a full breath.  I often stood in front of my refrigerator with my head in the open freezer compartment.  The cold air allowed me to breath more freely.  I was dizzy.  I had one episode in my kitchen where the room started to violently spin.  I would wake in the middle of the night shaking.  I’d come downstairs to avoid waking my husband up.  I would proceed to sit on the recliner, wrap myself up and shake uncontrollably.  Inevitably, my husband would come down and hold me.  I could barely talk.  We were both scared.

I returned back to the new doctor and told her about the new symptoms.  She was concerned.  She sent me to a pulmonologist, who told me that I needed to lose weight and exercise, a cardiologist who said that my heart was fine but a bit weak, his solution was to lose weight and exercise, and finally to a neurologist, who, after running an MRI, CAT scan, and a ECG, determined that I had a sinus infection.

With that, I had come to the end of my rope with traditional medicine.  It had been eight years, eight years of no answers and no help.  The only thing that sustained me was the Lord.  Even in the midst of very dark times, He would shine a light.  Now, we prayerfully considered how to proceed.

My brother-in-law who lives about 45 minutes away, told us of an alternative practitioner in his area.  He had been known to help people who could find no help.  I made an appointment.  At this point my husband didn’t even want me driving anymore.  He was right.  So, he took me.  I provided my health history and we spoke for a while.  He explained his method for accessing patients.  It was different all right.  But it wasn’t new age; it wasn’t invasive, and after prayer, I felt that this was the right direction.  After ten minutes the evaluation was complete.  The practitioner looked at me, gave me his disclaimer that he couldn’t diagnose or say for certain what was ailing me, and proceeded to say that it was likely Lyme Disease.  A flood of tears came flowing out.  Finally!  Finally!  Someone believed me.  I wasn’t depressed.  I wasn’t a hypochondriac.  I was sick, and according to him, very sick.  The majority of my major organs were compromised and my brain was a mess.  This was great news!  Strange, I know, but I can’t tell you how freeing it was for someone to acknowledge that I was sick and not crazy.  Now I knew something.  Now I could do something about it.

I began to meet with the practitioner twice per week.  We began by cleaning out my diet, which wasn’t bad to begin with.  We eliminated new found allergy foods and began a detox.  I took some awfully nasty herbal concoctions and a ton of supplements.  He told me that I wouldn’t see results for almost a year.  However, within a few months I was improving a bit.  There was some hope.  At around the nine month mark, I did feel markedly better.  I had been sick for so long that I had completely forgotten what normal felt like.  I wasn’t back to normal, but things were moving in the right direction, for now…

Up next:  Back with a Vengeance!

Lyme Disease Part I: The Slow Deterioration

If you read my last post regarding seasons, you may remember that I mentioned my utter dislike of ticks.  I’m not sure that anyone is particularly fond of ticks, but I have what may be categorized as a hatred for the little buggers.  If any of you have had the unfortunate experience to hike or camp with me, you know and have seen that the threat of a tick bite is something I think about….a lot….when outdoors.  While I have improved some over the past few years (really, I have), each time a family member or I step outside, whether it be in a field, a wooded area, a campground,  a blueberry patch, or my own backyard, my blood pressure rises a bit.  I will admit that this is something I am working on; I need to release this fear to the Lord because He is in control of all things…even tick bites, even Lyme Disease.

You may be wondering why I feel the way I do.  Well, I want to take the next few blog posts to explain that very thing to you.  These posts will serve as my own personal, public service announcement of sorts.  Lyme Disease changes lives.  It has truly changed mine, and, if in sharing my personal experiences, one person can be helped or made more aware, than it’s worth it! All of what I have to say is true and was experienced first hand by me. My story will be factual, and I will be quite careful to avoid exaggeration and hyperbole. I know that my story is not unique, for I have read the stories of countless other people, young and old, whose lives were turned upside down by Lyme Disease.

So, here goes; this is my story…

At the age of twenty four, I married my best friend. At the time, I was healthy, active, and full of life. My husband and I enjoyed hiking, swimming, snorkeling, scuba diving, bike riding, and just about anything that took us outdoors. Prior to that I had enjoyed working as an aerobics instructor; it helped me earn some much needed money for college and provided some great fun and exercise. I was strong and had great stamina. Although never thin, I was a healthy weight. In short: I was the picture of good health.

In 1999, my husband and I were ecstatic to find out that we would be expecting our first child in early 2000. I remember my pregnancy well. I never experienced a single bout of sickness; my weight gain was minimal, and I literally felt the best I had in many, many years. I even went into labor on my due date; our son was born the next day. He was healthy, and we were blessed! After my maternity leave, I finished out the remaining few weeks of the school year and tendered my resignation. I would now turn my attention to raising a family.

Being a stay at home mom was a big change for me. I had been fortunate to have worked full time almost immediately after my college graduation. I was used to the busyness. Being home was a blessing, but to be honest, I struggled a bit in the beginning. I loved my son, and I loved being a mom, but I was lonely. When my son was about three months old, I began feeling very tired and exhausted. I also was experiencing a foggy feeling in my head. I couldn’t attribute it to lack of sleep because my son slept soundly through the night after six weeks. I eventually went to my doctor who promptly ran some lab work, which included a test for Lyme Disease. The results were in and the only minor problem that was noted was a very small amount of blood in my urine. I was given a round of antibiotics to clear up what was likely a minor infection. Within two weeks I felt great.

Shortly after my visit with the doctor, I discovered that I was pregnant again. Joy would soon turn to sorrow after I experienced a miscarriage at around the eighth week of my pregnancy. Soon after the miscarriage, the Lord would bless us again with another pregnancy. This pregnancy would be much like the first, free of problems and full of health. Seventeen months after giving birth to my first son, my second son arrived. What a blessing.

With two children under eighteen months old, life was tiring and exhausting, yet oh so wonderful at the same time! But, yet again, I was stricken with severe bouts of fatigue and fogginess. I also began to experience aches and pains for no apparent reason. I found that simply putting my feet on the floor in the morning produced sharp, piercing pain in my feet and legs. Within a few hours the pain would diminish, but it returned with a vengeance each and every morning. My husband suggested that I return to the doctor, which I did. Again, lab work was run, including a test for Lyme Disease. All was normal with the exception of some blood again in my urine. Once again I was administered a round of antibiotics and told to return in a few weeks for a follow up. Within due time the antibiotics left me feeling like my old, energetic self.

During this time I was busy with the boys taking day trips, going to the park, playing in the yard, and the like. I was busy enjoying motherhood. I was blessed with a wonderful husband and two great children. Living on a single, blue-collar salary had its challenges, but the Lord provided for us each step of the way. The busyness of life allowed me to ignore the physical ailments that seemed to come back only stronger after each antibiotic treatment I had been given. In addition to the fatigue, fogginess, and aches and pains, I was now gaining weight and losing hair. After each shower I would clean away the clumps of long hair strands from drain and stare at the mass in disbelief. While my once thick head of curly, long hair was thinning, my waistline was expanding. Admittedly I was less active than I was before children. I was no longer teaching at the gym, but I did walk and was active. I also ate very well. I cooked all of our meals, refrained from junk, and ate wholesome, nutritious food. The noticeable weight gain didn’t make a lot of sense to me.

Late in 2004, I gave birth to my third son. This pregnancy was different than the others. I was exhausted beyond measure. I attributed this to being pregnant while caring for two young children. I figured it to be completely normal. However, within a few months after my son’s birth, I knew another doctor’s visit was in order. In addition to all the other issues (which were intensifying in strength), I now had an intense, constant pain below my lower left rib cage. My old doctor had left the practice, so I told my tale of woe to the new physician. He ran the normal lab work, including a Lyme test, yet again finding blood in my urine. This time, I was sent for an ultrasound, then a CAT scan, and finally for a visit with a urologist. The urologist performed lab work and a scope to check for a tumor in my bladder. All of the lab work and diagnostic tests came back normal. There was nothing wrong with me. It was simply determined that I was one of those people who just normally had a bit of blood in their urine. All righty then!

I continued to press on. My oldest son began first grade; he attended a Christian school at our church. I would drive to school in the morning and stand among the other moms in the hallway. It became commonplace for people to tell me how tired I looked. I had developed dark circles under my eyes. I was pale, and now, I was beginning to trip over my own words. I became so frustrated. I had trouble recalling names, common names of people I had known for years. My tongue felt tied up. I also began to have an intense ringing in my ears, and the pain that was once isolated to my feet, ran from my legs, to my hips, to my back and all the way up to my neck. I was only in my early thirties, but I felt like I was an old woman. My husband who couldn’t help but notice the changes in his once healthy wife, asked me to go back to the doctor. I really didn’t want to, but I did.

Next up: Depression, Testing, and a Ray of Hope!