Sick and Tired of Being Sick and Tired

I’m sure you’ve heard the phrase before!  My mother used to say it all the time.  It’s the perfect phrase to explain how I feel most days.  On one hand, I am thankful that God has blessed me to see another day, on the other hand, I’m immediately greeted with a number of symptoms that can change just as quickly as the day.

You see, with Chronic Lyme Disease, every day is a new challenge.  You’re always beyond tired. At least I am. That’s one of the major symptoms I have to fight hard against each day. No matter how much sleep I get, I always feel as though I’ve been awake for several days straight and that pretty much sucks!  Sorry, but I’m just being honest.  It can be quite frustrating to know that you have zero control over how you feel.  Yes, medication helps, (God knows I take lots of it) but for the most part, the medication is working on other symptoms, however, the exhaustion still lingers.  On any given morning not only am I extremely tired, my feet are swollen, I have a major headache and sensitive to sound and light, and that’s just for starters.  In a single month, I can navigate between over 100 different symptoms and no two days are the same.  Sounds like a party right?

I’ve learned over time that the medication I take will make me sick, but that’s how I know it’s working and doing its job to fight the Lyme and the co-infections that live in my body. So basically, it’s par for the course.  When I notice the medication is no longer making me sick, that’s a true indicator that the bacteria has become immune and that new medication needs to be explored.  My LLD will typically change up my meds every 3 months just so the bacteria doesn’t get too comfortable and learn how to “hide” from the medicine and continue to do harm.  The Lyme bacteria is pretty smart!

I’m still learning to deal with feeling both sick and tired. I’m hanging in there and confident that one day soon this too shall pass.

XO,

WC

 

 

 

 

 

 

 

 

 

 

 

A Marathon, Not A Sprint

It’s a few days after the Thanksgiving holiday and I have a lot to be thankful for!  Two years into my treatment plan and I’m seeing some progress.  During my last visit to my LLD, I received even more prescriptions, which left me a little down.  I was hoping that this visit, I would be allowed to decrease the amount of medication that I consume each day.  Even though that didn’t happen,  I realize that it could be a lot worse.  I could still be so sick that I can’t get out of bed or do anything for myself.  That’s progress, right?

On days where I feel myself feeling defeated or when I’m struggling to do even the simplest of things, I’m reminded that this process is a marathon, not a sprint.  I tend to want to see things done quickly so I can get on to the next thing, however, God has something else in store for me  during this season in my life.  I am learning to be patient, which has often been something that I’ve struggled with.   As I sit here typing this post, I’m feeling quite sluggish, I have a low-grade migraine and I have ringing in my ears.  Most people would not be able to function under these circumstances, but I have gotten used to it and God has given me grace to endure for he knows just how much I can bear. He gives me just what I need to run this race, and for that, I’m grateful.  My mother used to tell me all the time, “to whom much is given, much is required”.  I know that God has blessed me with much and he is using this illness to provide me with a platform to give him the glory and I intend to do just that!

‘Til next time,

WC

I’m Back!

Hello everyone!

Wow, it’s been a while since I’ve written anything.  Many things have happened in the two years since I’ve posted to my blog.  Where do I start?

Since, my last post, I have continued to see the same amazing LLD, Dr. Jonathan Forrester in Pineville, Louisiana (near Alexandria).  My treatment plan has changed a bit to focus on the ever-changing symptoms that I encounter.  I have also been diagnosed with two co-infections of Chronic Lyme Disease; Bartonella and Babesia.  Short-term memory loss has been a huge issue for me.  At times, I have trouble remembering what I did or said the previous day, which can be quite scary.  I take lots of notes to help me stay on track and rely heavily on my calendar to make sure I don’t miss any appointments for myself or events for any of my children.

In addition to the short-term memory loss, I continue to struggle with extreme exhaustion.  With the Lyme Disease, I suffer from bouts of insomnia which makes it hard on me during the day.  Even on the days where I feel like I’ve gotten a good amount of sleep, I’m still quite tired as a result of the disease.  Anxiety has also started to rear it’s ugly head in certain situations.  I start to become anxious over the smallest of things, that wouldn’t matter to most people.  The one thing that has really helped me get through it all is my faith in God.  I’ve always read my bible, but I find myself reading it more and more looking for hope in God’s promises to us.  I’ve also begun following Christian leaders, Joel and Victoria Osteen,  Joyce Meyer and of course my Pastors, Eric and Andrea Moore of Summit Worship Center in the Austin, TX area- who offer words of inspiration and remind me that God is in control.  My prayer life has also increased over the past few months and I continue to push through and navigate my life that now includes daily medication (I’m up to over 15 pills per day) and countless symptoms that come and go and seem to have a mind of their own.

My doctor told me during a recent visit that he would like me to add low-impact exercise to my treatment plan.  I have very little strength in my hands and my muscles are weak.  In fact, my hands are so weak, I have a hard time opening a small bag of potato chips, which would not have been an issue for me years ago.  I have little to zero muscle tone in my arms and legs too.  I’ve purchased a gym membership, though I’ve not gone much.  I get so tired and weak after a short time on the treadmill or the elliptical machine.

I’m staying positive and now only go see my LLD once per quarter instead of once per month.  This is a good thing since he recently announced to his Lyme patients that he would no longer be able to accept insurance.  My faith is strong and I continue to stay positive.  God is faithful.  He who began a work in me is faithful to complete it!

Til next time, be blessed!

Windy

 

 

Herxing and Insomnia

Well I have been on my current treatment plan for a few days now and things seem to be going ok.  At first it seems like nothing is happening at all, but that would change a few short days later.  By day 4 I began to have what I now know as Herx Reaction.  This is a term that basically means that you feel worse while you are getting better.  All of my symptoms seemed to getting worse and new one surfaced.  I was super exhausted, my legs felt like they were on fire, I had the worst migraines ever and I could not focus at all.  I honestly did not expect this, I mean isn’t medicine supposed to make me feel better?  What I later learned is that this is part of the process of getting better.  As the antibiotics are killing the Lyme in my body, the dead bacteria is creating toxins and causing inflammation.  At times I had a hard time breathing-“air hunger” and that can be quite frightening.  The Herx Reaction occurs in cycles, usually about every 4 weeks.  The other 3 weeks I am still feeling ill, just not as bad as week 4 which at times can seem unbearable.  It is during week this week that I have the most pain, the worst brain fog and tremors, the hardest time walking and talking and my voice comes and goes.  I also have problems with eye inflammation, involuntary muscle and limb movement.

Each day I wake up not knowing what symptoms I will be facing.  This makes if very difficult to plan out my activities ahead of time.  My sweet family just goes along with the flow of things and doesn’t really put pressure on me to do anything.  Most days I have just a couple of hours that I have energy to do things like pick up around the house or cook, so I try to save all my energy for that “one” thing after which I would crash.

The nights seem to be the worst for me, it’s around this time that I have developed insomnia.  I am up at all hours of the night, not feeling well but not being able to fall asleep.  My doctor prescribed Ambien for me, but I have heard so many horror stories that I refuse to take it.  I pray to God to help me to pass out so I can get just a little rest, if only for a few hours.  There are some nights that I am up until about 3am and I wake up at 7am and keep on going until the next day.  I try not to complain as I remember, this too shall pass!

Until next time!

Thank you for reading,

WJC

Help Is On The Way

As you likely imagine, by this point I am feeling very disappointed and hopeless.  Not knowing if I would ever find out what’s wrong with me is very disturbing to say the least.  At night while my family sleeps, I pray to God to guide me in the right direction to get the answers I sought.  He did just that!

In a previous post I mentioned that I met someone who also had Chronic Lyme Disease.  I reached out to her to gain more information about her treatment and the doctor she that was treating her.  After many hours of discussion and research, my husband and I decided it was worth a shot.  You see the doctor that I would begin seeing is located in Louisiana!  6 hours away from where I live in the Austin, Texas area.  The costs of travel and the unknown costs for copays, labs and potential medicine was worth me getting the answers I needed and longed for.  You may be asking why I need to drive all the way to Louisiana.  What I am learning is that in Texas there are not many doctors who are Lyme literate (more to come on that) and I have heard of people with Chronic Lyme Disease traveling as far as Chicago and California to seek treatment.  I know, it sounds crazy but it’s true.

So off we go to Louisiana.  As you can imagine I am feeling a wide range of emotions at this point.  Excited about getting some answers to scared of what I might find out to anger that I had to drive all this way because my own doctor brushed me off.  My wonderful husband is doing a great job at keeping me calm and focused.  He’s great at that…that’s one of the reasons I love him so.

We arrive.  We walk in an there are several patients in the waiting room.  My husband checks me in while I get situated in the lobby.  I am comforted by the many scriptures posted around the office.  God knew I needed to see that.  When I finally get called back to see the doctor, I provided him with all my medical records and he asked me a series of questions and such.  He did an exam, drew blood for lab work and some x-rays of my head.  Based on what he saw in my file, my symptoms and his examination he determined that there was a strong likelihood that I did in fact have Lyme Disease as well as a Co-Infection of Lyme Disease called Bartonella.  To be completely certain of a positive result, he wanted to wait to get the blood tests back.  

At this point, you may be wondering just what kind of symptoms I am having so I thought I’d share some with you (this is not all my any means):

Hand tremors, Brain Fog, Short Term Memory Loss, Unable to Focus or concentrate, pain, tingling and numbness in my feet/legs/arms, shooting pain in legs, insomnia, loss of balance, involuntary muscle movement, involuntary movement of limbs, weakness in hands/legs/arms, dizziness, abdominal pain, vertigo, extreme exhaustion (all the time), low-grade fever, loss of voice, eye infection, tenderness in the crown of my head, swelling and tender joints (fibromyalgia),blurred vision and back pain.  In total, I have a combination of 140+ symptoms.  Not all at the same time and not every day.  Each day is different, so I never know how I am going to feel when I wake up each day.

Finally after about 4 weeks, I go back to Louisiana for my second visit and got my test results.  I tested positive for “Chronic” Lyme Disease and during this appointment he also determined that I have Fibromyalgia and of course the Co-Infection Bartonella.  He started me on a treatment plan which consisted of a combination of various antibiotics and other medicine that would get me started.  He could mot make a determination how long this treatment would last though it has been said that for every year a person with Lyme Disease goes misdiagnosed, you need about 4-6 months worth of treatment.  I have been misdiagnosed since 2003…

On the way home and I am feeling relieved that I finally got some answers.  I am happy and a little nervous about what lies ahead, but with God on my side I know that I am up for the challenge!

Thanks for reading,

WJC

 

Where It All Began

So my story is quite complex in that I have been quite ill for many many years and could never figure out why or what was going on.  Over the past decade and more I have been seen by as many as 10 different medical physicians for a variety of symptoms, and  you can’t imagine the amount of money that comes along with all the copays and medication. Everything came to a head last fall when my health took a turn for the worse and I pressed doctors for answers and got copies of my personal medical records.  Here we go:

Upon reviewing my records my story dates back to April 1, 2003.  I woke up one day and noticed a circular rash on my right arm just below my shoulder and I had several smaller rashes on my torso.

Lyme Rash
Lyme Rash

 In addition to that, I noticed later that day that I was really tired to the point of exhaustion.  A few days later I noticed a tremor in my right hand, difficulty concentrating and had a hard time speaking and formulating sentences.  This obviously alarmed me so I called and made an appointment with a doctor who specialized in Internal Medicine.  She examined me and made note of all my symptoms and dismissed it as Rosacia and Non-Essential Tremor and stress.  A few months later I began having severe migraine headaches that would last weeks at a time.  This would continue for a few years.  Then in 2007 the tremors became worse along with the migraine headaches.  I went to my primary care physician who treated me for migraine headaches and suggested that I speak with a counselor for anxiety as he felt that’s the reason for my tremors.  Keep in mind I told him that I was not stressed or anxious, but he assured me that it must be the case, so taking his advice I made an appointment.  After a few sessions, the counselor did not see a need for me to continue.  I could have told her that!!

My symptoms continued for a few more years and I continued to get the same answer that it was just stress or in my head.  I was given all kinds of medicine to treat and prevent migraine headaches that only worked for a short period of time.  As you can imagine it became quite exhausting and frustrating.  I was taking care to 2 small children and they needed me. I was in and out of the Emergency Room and doctor’s offices over the next few years trying to get some relief. I would pray to God for answers…they would eventually come, but it would take a few more years.

Fast forward to 2011.  I was on my way home from work and all of a sudden I just felt as if I was going to pass out.  My hands were both trembling out of control and I could not focus or think and had a very hard time speaking.  I became quite frightened and called my husband on the phone who told me to meet him at the hospital.  Upon arrival I was seen by a neurologist, given an MRI, CT Scan and EKG.  You see at this time, my heart rate was up, I was lethargic and not my self at all.  I was admitted and told to make an appointment with a neurologist who would further evaluate me.  The day of the appointment I was told that I had a Chemical Imbalance as well as Anemia and again an Unexplained/Non-Essential Tremor and was given several scripts of medicine and sent home.  The medicine would “work” for a while and I thought finally I was going to get well.  Not so!  My symptoms would return as well as some new ones.  In 2012 I began to forget things and experience anxiety and I would easily become irritated over the smallest things.  My tremors were at an all time high, it became hard for me to hold items with any weight to it.    I thought just maybe the doctor might be right-that I was under stress from my job and didn’t realize it; and now that I no longer held that position maybe my symptoms would go away.  Not so.  The exhaustion increased, but I continued to push myself.  

It’s now 2013 and by this time I am just beside myself.  I think it was July or August that I started having issues with my legs.  It felt like my legs were on fire!  I thought I had slept wrong or something and dismissed it.  Over the next month or so the pain got worse, to the point that it kept me up at night.  My legs would go numb at will without warning.  The pain would go from the bottom of my feet up to the thigh.  This went on for a few more weeks until I went to visit my neurologist yet again.  He performed all kinds of test and suggested that I had Restless Leg Syndrome or MS.  Here comes more medicine.  A few months later I started having pain in my abdomen near my liver.  Blood tests had shown that I had an increased Ammonia Levels and I needed to see a GI doctor.  Here we go again…So the GI doctor ran some additional test and made the decision for me to have a Liver Biopsy due the fact that the high Ammonia Levels usually indicates issues with Liver function and with my family history of Liver Disease (mom passed away in 1994) he thought I should have this done, so I did.  The results were inconclusive.  The doctor was stumped and said he didn’t know what else to do for me and my liver appeared to be functioning normally.  Are you kidding me?  Here I go back to the Neurologist and he has no answers for me either other than to continue to monitor my ammonia levels for the next few months.  I would be in and out of the hospital lab having my blood drawn; I had every blood test known to the medical world.  My ammonia levels would continue to go up and down without a “real” reason.  Here’s where my story gets interesting.

I met a young lady who heard of what I had been going through (as she had been dealing with similar situation herself) and suggested that I might have Lyme Disease.  You see for many years, she too had been in and out of the hospital and several doctors offices trying to find answers and had eventually been diagnosed with Chronic Lyme Disease.  She sent me all kinds of literature and I started researching the illness on my own.  Most of what I read resonated with me and what I was going through.  I took a chance and called my neurologist and asked to be tested.  He said he didn’t think it was needed but did the test anyway.  The results were negative…or so I thought!  It was during this time that I saw a documentary on Lyme Disease called “Under Our Skin” .  It documents the stories of several different people who are dealing with Lyme Disease and the “controversy” surrounding it.  I will explain later.  Long story short there is a more detailed test that must be performed if a person has had Lyme Disease for more than 1 year and most doctors don’t want to deal with it (again I will explain later) or they don’t have the knowledge needed.  I called my Neurologist up and asked to be tested for “Chronic Lyme Disease” and was totally shocked by his response.  Here’s what he said (via his nurse): “Chronic Lyme Disease is a very controversial subject and I don’t want to test you for it.  If I do and you come back positive, I will have to treat you (since I am his patient) and I don’t want to deal with that.  I think you should see an Infectious Disease doctor who can maybe help you”.  I was beyond upset. Don’t these doctors take an oath to do what they can to help all patients????  I guess that went out the window…

Help would eventually come…

Stay tuned!

WJC

Photo Credit:

Logical Images, Inc.

What Is Lyme Disease?

For my very first post, I thought it fitting to share what the heck Lyme Disease is in the first place.  If you’re like me, you’ve most likely heard the very short version of what it is or maybe you’re unfamiliar altogether.  So here is goes;  below is how Lyme Disease is defined via Wikipedia:

“Lyme disease (Lyme borreliosis) is an infectious disease caused by at least three species of bacteria belonging to the genus Borrelia.[1][2][3] Borrelia burgdorferi sensu stricto[4] is the main cause of Lyme disease in North America, whereas Borrelia afzelii and Borrelia garinii cause most European cases. The disease is named after the towns of Lyme and Old Lyme, Connecticut, US, where a number of cases were identified in 1975. Although it was known that Lyme disease was a tick-borne disease as far back as 1978, the cause of the disease remained a mystery until 1981, when B. burgdorferi was identified by Willy Burgdorfer.
Lyme disease is the most common tick-borne disease in the Northern Hemisphere.[5] Borrelia is transmitted to humans by the bite of infected ticks belonging to a few species of the genus Ixodes (“hard ticks”).[6] Early symptoms may include fever, headache, and fatigue. A rash occurs in 70–80% of infected persons at the site of the tick bite after a delay of 3–30 days (average is about 7 days), and may or may not appear as the well-publicized bull’s-eye (erythema migrans). The rash is only rarely painful or itchy, although it may be warm to the touch. Approximately 20–30% of infected persons do not experience a rash.[7][8] Left untreated, later symptoms may involve the joints, heart, and central nervous system. In most cases, the infection and its symptoms are eliminated by antibiotics, especially if the illness is treated early.[9][10] Delayed or inadequate treatment can lead to more serious symptoms, which can be disabling and difficult to treat.[11] The term “chronic Lyme disease” is controversial and not recognized in the medical literature,[12] and most medical authorities advise against long-term antibiotic treatment for “chronic Lyme disease”.[13][14][15]”

 

I know that’s a long definition, but it paints a very adequate picture of what I am currently dealing with.  I hope that you pay close attention to the last sentence pertaining to “Chronic Lyme Disease”, this will become more clear as in future posts…very interesting I promise.

 

Thank you for reading,

WJC