Share Six | Green: Lyme Disease

This month’s theme is green in honor of Lyme disease. I chose this theme because 1. it was only fitting as we have several family members with Lyme disease, and 2. May is Lyme disease awareness month.

Here’s a little intro to Lyme disease:

Lyme disease is a spirochete bacterium that is transmitted by ticks. It is the fastest growing infectious disease, and is 1-1/2 times more common than breast cancer and 6 times more common than HIV. If treated with antibiotic therapy soon after transmission, the probability of successful treatment is much higher. If it goes untreated, it can infiltrate a person’s body and wreak great havoc. Untreated Lyme disease is known to attack the heart and central nervous symptom. The numerous symptoms mimic other chronic illnesses such as ALS (Amyotrophic Lateral Sclerosis), MS (Multiple Sclerosis), ADHD (Attention Deficit Hyperactivity Disorder), Rheumatoid Arthritis Parkinson’s Disease, Lupus, Chronic Fatigue Syndrome, as well as many others. Because of this, many patients with Lyme get misdiagnosed and go years not being properly treated, therefore furthering the progression of Lyme disease. Awareness of this disease is imperative, as there are over 300,000 estimated new cases of Lyme disease each year in the United States alone (according to Johns Hopkins Medicine). It was once believed that you always got a bullseye rash if you contracted the disease from a tick bite, but we now know that is not the case. Not everyone presents with a bullseye rash. Without a bullseye rash (and even with one), many people don’t connect their symptoms to the tick bite. The more awareness we can bring, the better people can understand and know what to look for when searching for answers to their health problems that were unknowingly caused by a fateful tick bite. Please join us this month in spreading awareness.

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So here’s a little run down. My aunt has Lyme disease, my mom has Lyme disease, my son has Lyme disease and I have Lyme disease. While my mom remembers her fateful tick bite and bullseye rash, the rest of us don’t.  In fact, not everyone presents with a bullseye rash.  We may very well have though, as my son and I are magnets for bug bites and have had our fair share over the years.  Not to mention we have found numerous ticks on our dogs and belongings.

To give you a little history. My mom was bit years ago and was oblivious to the fact that she needed treatment. As the years went on, she developed what doctors thought was arthritis, fibromyalgia, and psoriatic arthritis (just to name a few).  She went on medicine to treat those things, but saw very little successful results. There were days when she could barely walk. Fast forward several years…my aunt gets tested and diagnosed after developing weird symptoms and making the connection that her dogs had similar symptoms and tested positive for Lyme.  My aunt reminded my mom about that tick bite so many years ago.  So my mom goes in and sure enough, she gets diagnosed with Lyme.  Guess what?? She went on long term antibiotics and all of her symptoms went away.  She had so much energy, she could walk again, and her psoriatic arthritis cleared completely up.  Unfortunately though, the doctor didn’t want her on antibiotics for too long, so she had to stop.  After ceasing treatment her symptoms came back.  She got a sinus infection and went on antibiotics for that.  Guess what, all of her arthritis, fibromyalgia and psoriatic arthritis symptoms went away AGAIN.  She felt like she had her life back.  It is amazing what this disease does and it’s amazing how simple treatment can be for some people…if they could just find a doctor that is willing to treat.

My pictures for this theme are of my son, but I’m only going to go into his story briefly, as this whole ordeal that he as endured over the course of several years has made him very sensitive. He doesn’t really like people knowing about all that he has gone through.

In a nut shell, a few years back he was constantly getting sick. He kept coming down with mycoplasma pneumonia. He started getting horrible migraines. He also said his brain felt like it was on fire.  He had one migraine that lasted for more than 4 days.  The doctors were getting ready to schedule a spinal tap for the following day.  Thankfully he woke up that following day and the migraine was gone.  He started having short term memory loss, as well as some sensory issues and debilitating OCD. We had no clue what was going on. The recurrent mycoplasma continued as well.  We stopped going to our homeschool functions and even went to church sparingly during the winter months because he caught every bug that was going around.  We took him to doctor after doctor trying to get answers.  Since I’m his teacher, I noticed all of the changes in his academic abilities. He lost some motor function, which was evident by his regression with his handwriting.  He started to not be able to remember his math facts anymore.  This went on for years.  Thankfully one day my aunt suggested we have him tested for Lyme.  So we did. We figured we didn’t have anything to lose.  A few weeks later we got a call from the county health department needing to document his case.  He had tested glaringly CDC positive for Lyme.  You know what the kicker is? I heard nothing from his pediatrician.  I called their office and asked if the doctor needed to see him so he could be treated and they said no.  So we were on our own.  I had to now research doctors who knew about Lyme and how to treat it.  Meanwhile I was dealing with my own achy joints, legs and fingers that would randomly go numb.  My legs would feel like they had dozens of bugs crawling on them at random times throughout the day as well.  I developed an irregular heartbeat. My thyroid went all crazy and I’ve developed severe fatigue.  I briefly got treatment along with my son, but our insurance plan is awful and things add up quickly.  So for now I’m putting my treatment on hold to focus on getting our son to a good place.  He recently had four weeks of IV antibiotics.  With our infectious disease doctor, IV antibiotics are standard treatment for Lyme that is attacking the nervous system. Being that our son was young, he started him off with oral antibiotics, but they weren’t cutting it. He has finished his round and now we wait.  We were told it can take 18 months before we see full recovery and know if the IV antibiotics worked.  So now we wait. Quite frankly though, I’m sick of waiting. I’m sick of this being strung out for all these years.  It’s so hard to watch your child be sick and go through what he has gone through.  I’m just ready to be past it all.

Thankfully we were able to do his daily infusions at home (especially since his doctor is almost 2-1/2 hours away).  So every day around 11, he’d get comfortable and we’d hook up his antibiotics.  They took about a half hour to infuse.

Here they are taking out his PICC line.  This was his reaction to how long it was.

I know I have not even remotely covered everything I should have, and even planned to cover.  Honestly, I’m not even sure if you all would even read it, or if you’ve even read what I did write. I know this post isn’t my best writing.  I’m extremely exhausted at the moment and can’t even think straight.  It’s been a long several weeks. No, it’s been a long several years.

Please learn from us.  Learn the symptoms of Lyme, learn how to prevent tick bites, learn about proper treatment (a 10 day course of antibiotics is not going to cut it).  We’ve been doing our best to spread the word and have even helped two people find the answer to their illness – Lyme.  We have a friend whose son suddenly started losing his hearing after a camping trip. I thought it could be a long shot, but asked them if he had been tested for Lyme.  He hadn’t.  She took him to get tested and sure enough, he tested glaringly CDC positive as well.  He’s been receiving treatment and has most of his hearing restored.  I’m telling you, this disease is ruthless.  The reason the symptoms are so different for people is because the bacteria is a spirochete with no cell wall and infiltrates wherever it feels like going.  For some people it’s the joints, for some it’s the heart and for others it’s the nervous system.  If you know someone who is dealing with any of these symptoms and isn’t getting answers, you may want to encourage them to get tested for Lyme.  I will say though, EVERY doctor has told us, if you’ve had Lyme for a decent amount of time, your immune system can become taxed and stop producing enough antibodies to yield a positive test result.  So just because you test negative, that doesn’t mean you don’t have it.  Try treatment, see if that helps. You might be amazed.

On another note related to Lyme disease…if you find a tick attached, don’t pour anything on it, or light a match to get it to back its head out.  Doing those things can agitate the tick and cause it to regurgitate whatever diseases it may be carrying, and those diseases will get regurgitated right into you.  The best way to remove a tick is with needle nosed tweezers.  Grab as close to your skin as possible and pull straight up firmly.  You want to be sure to get the head out. You also don’t want to squeeze the body of the tick as that will cause it to regurgitate as well.

Well, thank you so much for stopping by. I hope you have learned something about Lyme disease.  If you have any questions, please feel free to comment here. I’m more than happy to answer any questions you may have.

Head on over to Ceri Herd’s blog by clicking here.  I’m sure you’ll enjoy her images.  She is incredibly talented!!