My Lyme Struggle | The Beginning…

Lyme Times, this is a great resource for those wanting to learn more.

This will be the first in a series on Lyme disease providing research, knowledge & various ‘hard lessons’ I’ve learned while uncovering the truth about this debilitating illness.  I would like to share what I have discovered with those who might be searching for answers & can’t seem to find the help they so rightly deserve.  I have stuffed myself full of knowledge about the development & progression of Lyme disease, officially discovered in 1977, but still there remains a great amount of controversy surrounding diagnosis of Lyme patients.  Many doctors remain argumentative over the very existence of chronic Lyme!  Long term antibiotic treatment continues to remain controversial & I’ve learned some things the hard way, from diagnosing to treating, & yet I am beginning to realize my battle has just begun.

The last year has provided me with some of the most difficult challenges I’ve ever faced.   I have quickly become quite the expert in a subject that I hadn’t though about since grade school: Lyme disease.  I remember attending a lecture at 4H camp regarding ticks & the dangers associated with the multiple diseases they carried.  It was a late summer afternoon during a week of 4H camp but we were silly little kids eager to get on with our summer.  I admit it momentarily freaked me out, but it was quickly forgotten by the next summer when my brother & I, once again, built forts in the woods surrounding our home in Southeast Georgia.

Most of you who follow my blog know that my husband has been incredibly ill for the last 10 months & has progressively gotten worse.  He was first hospitalized with an acute case of Pancreatitis in November of 2008 & over the last year his list of symptoms have grown & worsened as the months pass.  I’ve stood by & watched as he doubles over in extreme pain, fighting boughts of nausea, fevers spiked with chills, uncontrollable tremors; he is wasting away in front of my eyes & none of the 10 doctors we’ve seen have had any answers.  I’ve looked on in desperation as he’s dropped over 70 pounds & now looks like a haggard version of his former self.  Test after test, doctors come back puzzled & remark ‘He looks completely healthy on paper.’  I also had a doctor tell us that nothing was wrong with his Pancreas while my husband was lying in the hospital suffering an attack.  But I know the truth: my husband is dying & these doctors aren’t going to be able help me.  We’ve been in a downward spiral & no one has any answers.

We were rejected by the Mayo clinic, they reviewed our case & didn’t think they could contribute anything further.  We’ve gone through procedure after procedure, visiting with GI doctors, pain management specialists, infectious disease doctors… we even saw a surgeon to see if he thought removing the gall bladder was a viable option.  We drove to St. Louis to consult with an infectious disease doctor with Barnes Jewish because it is such a reputable hospital.  No one mentioned or even tested for Lyme disease.   I was doing my own research but I was overwhelmed by everything going on around me.  I began to feel hopeless watching my husband suffer on a daily basis.  He was certain that this mystery illness would kill him.  I argued with him but in the back of my mind wondered if he might be right.

I remember long nights searching the Internet, wallowing in misery because I couldn’t find a solution.  Despite his ‘healthy paper’ trail, I knew something was seriously wrong.  I’ve watched this man suffer from a shattered, dislocated elbow only taking Advil for pain.  But these episodes of pain are much different, it seemed cyclic to me- he was always worse first thing upon waking.  I also noticed that he seemed to ‘spike’ every 4-6 weeks with an extremely painful episode happening around week 4/5.  He began having trouble sleeping, staying up for days at a time.  His thought process began to change, he had trouble with things that once came easily to him & he began forgetting things (a rarity for my hubby!).   I can’t begin to express how devastating & worrisome some nights have been.

Diagraham of Various Ticks

It was easy to assume new side effects were simply due to the arsenal of medications he’d been taking but I began to dig deeper.  I mildly began expressing my concerns through Facebook when a friend mentioned that Lyme disease is on the rise in our area.  Her husband had contracted the disease (albeit with VERY different symptoms) & she gave me a few web sites to peruse.  I thought it was worth a read & consideration, especially since I wasn’t getting answers anywhere else.  A red flag was raised as I read about the cyclic nature of this disease, symptoms are worse in the morning, symptoms migrate, trouble thinking & concentrating, irritability, fatigue & because this disease is caused by a spirochete- it is a master at replicating any disease.

It’s possible he’s been infected with Lyme for many, many years and a compromised immune system (he broke both of his arms in 2007) allowed the Lyme to invade various systems more easily.  There are three stages to Lyme disease; unfortunately due to late diagnosis, I believe my husband is in Stage II or III which can prove difficult to erradicate.  But I am searching for solutions & I am not giving up hope.  In my next post, I will discuss how I diagnosed him (yes, little ole me figured it out) & my desperate search to find a Lyme Literate Doctor who could help me navigate these troublesome waters.

We live in an endemic area which means that 50% of the ticks carry Lyme disease!!

Quick Facts: Take this information Seriously, it may save your life!!

Lyme is transmitted by an infected tick.

The disease has been found in all 50 states & on every continent except Antarctica.

LD is the fastest growing undiagnosed illness in our country.

It typically takes between 24-48 hours for an attached Tick to transmit the disease.

Lyme Disease is easy to treat when first contracted.  If you’ve been bitten, see the doctor immediately & SAVE the tick!! (it’s easier to test the tick than the person)

50% of Lyme disease cases begin with a rash surrounding the site of the bite; however this does not occur in all patients!

Lyme often DOES NOT reveal itself with early testing procedures.

Be vigilant, cautious & take this advice seriously.  No one should have to go through what we’ve gone through if it can be prevented.

Symptoms can appear quickly or develop over time. Since Lyme is a multisystem disease, the list of symptoms is long, and it is common to see symptoms affecting multiple systems. Early in the illness Lyme disease can be confused with the flu, but as the disease progresses it can lead to cardiac, musculoskeletal, neurological, and/or other system involvement. Patients with chronic Lyme disease often experience severe headaches, fatigue, pain, insomnia, and memory problems. Chronic Lyme disease can render people completely disabled. For a comprehensive list of symptoms, please visit here {Lyme Association of Kansas City}.

Some Resources:

Advanced Topics in Lyme Disease : Resource guide for diagnosing & treating Lyme disease {Read this from cover to cover, great information!}

California Lyme Disease Association : They publish great journal {Lyme Times} on a variety of subjects surrounding Lyme.  This has been a great resource for me!

Lyme Research Database

American Lyme Disease Foundation

Lyme Disease Foundation