Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Friday, May 24, 2013

Out of the Darkness and Into the Light - Lyme Disease and Mental Health

Here is a post I've been wanting to write for a while to encourage those of you who find themselves in the grip of depression or anxiety, brought on by Lyme disease.

Thankfully, discussing mental health is not as taboo as it once was, with high-profile individuals choosing to speak out about their struggles.  Clara Hughes, a Canadian six-time Olympic medalist, is the first one who comes to mind.  Clara has partnered with the Canadian Mental Health Association and Bell to bring awareness to depression, which hit her during her amateur career.  Perhaps you have seen her public announcements on TV in the past year.  I applaud her courage.

The nice thing about watching Clara on TV is to see that big smile on her face, and true joy and happiness in her heart.  It's a tangible reassurance that a person can emerge from depression and live a happy, fulfilling life. 

Let me tell you what depression and anxiety are NOT:

They are not feelings that can be controlled.
They are not feelings that you can "snap out of".
They are not necessarily caused by one's thought life.
Depression is not just "feeling down" about something.
Anxiety is not just "worrying" about something.

Now let me give you a definition of what they ARE:

Depression:  Depression is a medical illness that causes a persistent feeling of sadness and loss of interest.  Depression can cause physical symptoms, too.  More than just a bout of the blues, depression isn't a weakness, nor is it something that you can simply "snap out" of.  Depression is a chronic illness that usually requires long-term treatment, like diabetes or high blood pressure.  But don't get discouraged. Most people with depression feel better with medication, psychological counseling or other treatment.  (Source:  Mayo Clinic website)

Anxiety:  Generalized Anxiety Disorder, or GAD, is an anxiety disorder that affects about 5% of the population. People with GAD worry excessively and uncontrollably about daily life events and activities. They often experience uncomfortable physical symptoms, including fatigue and sore muscles, and they can also have trouble sleeping and concentrating.

Panic disorder is an anxiety disorder that affects about 3.5% of the population. People with panic disorder experience unexpected and repeated panic attacks. They become terrified that they may have more attacks and fear that something bad will happen because of the panic attack (such as going crazy, losing control, or dying).  (Anxiety BC website)
Researchers know that problems with brain chemistry can contribute to the development of anxiety disorders. Certain neurotransmitters (chemical messengers) in the brain involved in anxiety include serotonin, norepinephrine, and gamma-aminobutyric acid (GABA).  Researchers have also shown that changes in activity in certain areas of the brain are involved in anxiety.  Many anxiety disorders run in families and likely have a genetic cause.  (Source:  Canadian Mental Health Association website)

Honestly, if you have never personally experienced an anxiety disorder or clinical depression, it may be hard to relate.  We all have bouts of worry and the blues; that's just part of life.  But anxiety and depression as mental illnesses go far beyond that.  They take over your body; they take over your life.  They are truly debilitating.  And you just can't control it.

So what does all of this have to do with Lyme disease?  Well, anxiety and/or depression can be symptoms of Lyme.  Doctors who are members of ILADS (International Lyme and Associated Diseases Society) completely recognize neuropsychiatric Lyme.

And it happened to me.

My very first Lyme symptom was a strange vibration in my head which prevented me from falling asleep.  The next symptom was a horrendous anxiety.  These were followed by a host of other physical symptoms which I outlined in My Lyme Story.  Yes, of course I was "worried" about my first symptom, but the anxiety was NOT a result of that.  The anxiety was a stand-alone symptom, an uncontrollable symptom, and an unpredictable symptom.  It was not based on my thoughts.  It was a feeling of severe inexplicable fear that would wash over me, rising up from the pit of my stomach.  It reared its ugly head whenever and wherever it wanted.  I remember the most horrible feeling in my gut came on one time as I was shovelling the driveway!  Perhaps I was suffering more from "panic disorder", which is one form of anxiety.  Coupled with my many strange physical symptoms, I knew that something was terribly wrong with me. 

As much as I avoid taking unnecessary medication, I had no choice but to rely on benzodiazepines for a time (e.g., Xanax and Ativan).  I was thankful for them, as they kept things under control when that awful feeling came on every day.  But when I learned that I might develop a tolerance to them over time with regular use, I chose to switch to an SSRI (selective serotonin reuptake inhibitor) to control the anxiety while my Lyme disease was being treated.

Lyme disease causes inflammation in the body, and I believe that the infection caused some slight brain swelling or caused my neurotransmitters to misfire.  Regardless, the result was dreadful.  I recall searching for answers online, and listening to a lecture by Dr. Daniel Cameron, an LLMD and past president of ILADS, as he discussed neuropsychiatric Lyme.  He said that Lyme patients may need antidepressants as part of their treatment.  In some small way, that comforted me because at least I knew WHY I had developed the severe anxiety.

Slowly the SSRI began to take effect, and over time I was no longer controlled by the anxiety.  At the same time, I was on antibiotics for the Lyme, so they were working together to heal me.  I stayed on the SSRI for a year and a half and then tapered off.  I'm no longer in need of that medication.  I emerged from that dark cave into the light of day!  And like Clara Hughes, I can smile again and enjoy life.

I do have some tips/advice for those of you who may be starting psychotropic medication in conjunction with Lyme treatment:

1.  SSRIs can initially increase your anxiety.  Yup, it's true!  This is why my doctor suggested that I use a benzodiazepine along with the SSRI at the start.  After a few weeks, I was able to drop the benzodiazepine entirely.
2. Sometimes, an SSRI can cause suicidal feelings, in which case you must go to the nearest ER or contact your doctor immediately.  There are many different SSRIs on the market, and you may have to experiment to find the one that works well for you.
3. SSRIs do not have an immediate effect.  You can begin to see improvement after about 2 weeks, but it can take up to 3 months for the full effect to be achieved.
4. For some people, including myself, it can be hard to come off an SSRI because of withdrawal symptoms.  They should never, EVER, be stopped cold turkey.  You must taper off them over a course of a few weeks.  In my case, however, I had to taper off over a course of about 5 months, otherwise I would develop "electric shock sensations" in my head.  This is a fairly rare, but entirely possible withdrawal symptom, which is noted in the literature for SSRIs.  To taper, my doctor wrote a prescription to have the drug compounded into a liquid form, and then I could reduce the dosage gradually down to a miniscule amount.  This gave my body time to adjust to the reduction of medication. 
5. SSRIs can cause weight gain.  You might crave sweets and carbs while on this medication.  So be careful, or else you may find yourself needing to lose 30-40 lbs. by the time you're done.

I would like to add one final note about an unrelated drug, Lyrica.  Have you seen the commercials for that on TV?  Like most drugs, the benefits are advertised in the commercial, and then the LONG list of potential side-effects is listed.  Sometimes the list is so long with such serious side-effects that the commercial is laughable!  Lyrica is a pain medication prescribed to individuals who need particular nerve pain control.  Often, individuals with Fibromyalgia take this medication.  I understand that it greatly helps many people.  A neurologist I saw thought that it was worth a try to see if it calmed those vibrations in my head.  But all it gave me was a horrible depression with daily crying spells.  Let me tell you this....I have never been an easy crier, and I have never suffered from depression, so this was all new to me.  Lyrica made those tears flow like a tap.  No one really picked up on it for a while, but one of my doctors suggested that I go off Lyrica, and the depression and crying lifted immediately and have never returned.  All this to say....read up on the side-effects of all of the drugs you are taking, and keep track of any new symptoms.  Consult your doctor if anything unusual crops up.  It may not be the right drug for you. 

Please know that counselling and prayer were a huge part of my healing as well.  Books such as A Place of Healing - Wrestling with the Mysteries of Suffering, Pain, and God's Sovereignty by Joni Eareckson Tada and Prayers of Hope for the Brokenhearted by Jill Kelly, helped get me through those rough times.  Call out to God and let Him wrap His strong arms around you.  Check out my Peace and Hope tab if you're not sure where to start.

I want to leave you with this encouragement.  Anxiety and depression, whether caused by Lyme disease or not, can be controlled or even cured.  Talk to your doctor and seek counselling.  And above all, do not lose hope!

Sunday, May 12, 2013

What has Lyme done for you lately?

How has Lyme disease changed you?  Do you ever think about that?  Has it been for the better or the worse?  As for me.......

Lyme has made me acutely aware of my mortality.  I truly thought I was dying and may very well have if I had not found a Lyme-literate physician.

Lyme has brought me closer to God.  He is ultimately in control of my life and I am so OK with that.  He is my comfort and my hope.

Lyme has made me less carefree about life.  I'm not always sure how I will feel from day to day or sometimes hour to hour. 

Lyme has made me grateful.  I can still hold down a job, and be a wife and mother.  I have supportive friends and a loving family.  And my health has improved immensely in the past two years.  I have lots to be thankful for.

Lyme has made me more aware of my limitations.  Out for a walk last night, I noticed how I just don't feel the same as I used to.  My muscles and joints are sore.  I just feel old.

Lyme has hardened me.  I sometimes think I feel less emotion than I should.....maybe because Lyme disease was the most harrowing emotional experience I have ever gone through and I'm just drained.

Lyme has softened me.  I understand and empathize with others who have a chronic illness and I understand that the way they look doesn't always match how they feel.

Lyme has made me bolder.  Creating a blog, writing to my government representatives, doing a guest spot on a radio program.....these are things I wouldn't have done before. 

Lyme has made me frustrated.  The lack of knowledge in the medical community about this illness, the conflicts of interest, the in-fighting, the roadblocks, and the fact that I have to travel 3 hours away to see a doctor......these things are just so unbelievable. 

Lyme has made me into a helper, a resource for others.  And boy does that feel good!  I'm so humbled to be able to share my experience and help others who need information.  I'm just paying it forward!

All events in our lives, good and bad, shape our character in one way or another. 

Again I ask, how has Lyme changed you?

Check out this video to see the effect of Lyme on this woman's life.

The Evolution of an Angler

Monday, May 06, 2013

Under Our Skin

Here is the full-length version of Under Our Skin which I recently found on You Tube.  This is an award-winning documentary which explains the history and controversy surrounding Lyme disease.  It was a long time before I could bring myself to watch the film.  It's a horror story I was living, and it was just too frightening to see my pain reflected back to me in the film.  It's all true.  In honour of Lyme Disease Awareness Month, I thought I'd post it for those interested.  

Saturday, May 04, 2013

May is Lyme Disease Awareness Month

Are you doing anything special this month to highlight Lyme disease?  Are you looking for an event to attend?  Here are a few ideas:

For a list of events in your area, check out this link on the CanLyme website.

In other news, Jim Wilson, president of the Canadian Lyme Disease Foundation (CanLyme) had some great news posted on Facebook today.  Here is the post:

A message from Jim Wilson, President of CanLyme:

Good news is that CanLyme is now fully confident our full research program will be underway by 2015 (and certain projects will commence quite soon) thanks to the wonderful donors who have designated their substantial donations for this project and hard work and many volunteer hours by the CanLyme Board of Directors. We will be also working with pro
fessionals, at considerable cost, to make this happen within the Canadian medical system, despite some resistance.

As you can understand this is a first of it's kind in Canada and much work is involved in setting this up. It may have appeared to some that little was happening, but that was and is not the case. Many meetings have taken place in various provinces with those people we need to make things happen and many more are planned. Research protocol have been almost completed, and medical ethics approval will be the next major undertaking.

Designated funds are held for the distinct purpose the various donor's requested their funds be allotted for, meaning we cannot allocate the monies to our general operating fund, which is always in need of more money.

Many other volunteers are making things happen Canada wide, and for a full listing of what is happening for May Lyme Awareness events in your province please go to
http://canlyme.com/2013/05/03/events/ and you will see that a lot of events are underway. Please attend these events if possible and bring friends!!
Thank you to Jim Wilson and the board members of CanLyme who work hard to assist those in Canada with Lyme disease.  We are truly grateful for all you do, in the face of such opposition.  Change is happening and will continue to happen as we persevere in educating the public AND the medical community about this illness.