2017 Highlights

Hello everyone!

I just thought I'd touch base as it's been a while.  2017 has been an interesting year in the Lyme world with more publicity for Lyme and some small, but positive steps with regard to advocacy.

Firstly, we saw the establishment of the G. Magnotta Lyme Disease Research Lab at the University of Guelph this year, with a $1.4 million grant from the government.  I had been waiting for this announcement for a couple of years.  The last I had heard, it was supposed to be in conjunction with the Humber River Hospital, but apparently that plan fell through.  I am glad to see this partnership established and look forward to hearing about their research. 

Secondly, we saw some baby steps towards progress in conversations between a particular Lyme advocacy group and the federal government.  Sue Faber and Jennifer Kravis call themselves LymeHope, and they had a very successful campaign to collect and deliver 2 700 letters from Lyme sufferers all over Canada to then Health Minister Jane Philpott.  Click on the LymeHope link to read more about their story and what is in store.  I was pleased to be one of the 2 700 people to tell my story to the Health Minister.  Thank you so much, Sue and Jennifer, for your tireless effort!

This year, we saw Lori Dennis, a psychotherapist from Toronto, promote her new book, Lyme Madness.  The book recounts her son's harrowing journey to heal from Lyme, but in addition, she does a fabulous job explaining the roadblocks we face in Canada with regard to our medical system.  All of your questions about the madness of this situation will be answered in her book.  Her book also includes dozens of accounts from Lyme sufferers in Canada.  I was so pleased to have my personal story included in her book.  This book is a fantastic read and I highly encourage everyone to get a copy!

I have spent some time updating a few things on my blog.  If you check out my Books tab above, I have added several new books to the list.  More is being written about Lyme every year it seems, and "famous" Lyme sufferers are coming out of the woodwork, with several publishing their Lyme stories.

I have also added an update to the My Lyme Story tab above.  If you scroll down to the end, there is some information about what's been going on with me the past couple of years.  Every day is a struggle, but through those struggles, I have come to better understand God's blessings in my life.

I'm praying for you all, and hoping for a better future for all of us Lyme sufferers in Canada.
 

Lyme News

Thank you to a reader of mine who brought this article to my attention.  Please have a read.  It is a much better depiction of the Lyme situation in Canada.

I am so pleased to learn that "a private member’s motion was passed with all-party consent in the legislature Nov. 27 calling for Ontario to develop an integrated strategy on Lyme disease, to be tabled within one year." (Article:  Lyme Warning No Surprise to Sufferers, www.yorkregion.com)

A similar proposal at the federal level, Bill C-442 introduced by Green Party Leader Elizabeth May, has a bit of a fight on its hands.  Although it has passed all three readings in the House of Commons, there is some opposition by a group of infectious disease doctors.  See this link for all of the information.

OK, so this is going to be an uphill battle, but how great that the Lyme issue is finally getting the attention of people who can actually help to provide real solutions.  I'm sure that in my lifetime, there will be major developments and people will no longer be left to suffer with this devastating illness.

Keep praying!

Olympian fought Lyme Disease and won!

Since we're in the thick of the Sochi Olympics, I wanted to bring your attention to a very brave and determined woman, Angeli Vanlaanan.  Angeli is a halfpipe freeskier who made the U.S. Olympic team after a 3 year battle to regain her health.

What an inspiration and message of hope this is for all Lyme sufferers everywhere.  Yes, it is possible to regain your health, your strength, your life. 

To watch Angeli's documentary about her illness, click here.

To visit Angeli's website, click here.

All the best to you, Angeli!  We are very proud of you!

 



A little advice for the holidays.....from someone who's been there

I want to take this opportunity to wish all of you a very Merry Christmas and many blessings in 2014! 

I know this may be a very difficult season for many of you who are sick with Lyme disease.  It's such a busy time of year.....shopping, baking, hosting, cooking, visiting.....and some of you are just not able to do it.  The fatigue of Lyme can be crushing.....I do remember!  So, let others do the work for you, and do what you can to find some enjoyment in the season, and in visiting with others.  It's good for the soul to be with others.

Perhaps friends could visit in short spurts over the holidays.  Maybe they could bring a meal that you can all share together.  When I was sick, one of my friends brought a lasagna meal, and we all ate together.  I sat at the table with a blanket around me because I was so cold, and I enjoyed the stories told.  I felt so horrible, physically, but the companionship was wonderful. 

Watch some Christmas movies as a family, and even though you are sick, try to cultivate that family togetherness that your children are craving at this time of year especially.....even if all you can do is lie on the couch.  Invite your little ones to snuggle up with you; after all, it's you they want, not things.

Try very hard to not worry about how all of this is affecting your young family.  Children are so resilient, and they adapt to new situations.  My kids have seen it all in their young lives.....believe me.....from Daddy in the hospital with no hair and 50 staples in his scalp, to Mommy and Daddy both being carted off in an ambulance while police babysat them until Grandma and Grandpa could arrive.....to Mommy being unable to cook, clean, or care for them in the usual ways.  (You can read our whole story here.)
 
With my husband and I both seriously ill at various times for 10 years, one might think that the children would be scarred for life.  This is not true.  If anything, it has made them empathetic and sensitive.  It has shown them the importance of service to others in difficult times, for we certainly had our share of help over the years.  It has shown them the meaning of family when their grandparents, aunts and uncles, and cousins came to help in our times of need.  It has shown them how God cares for us and carries us through the valleys of our lives.  Our kids have continued to thrive, do well in school, and be well-adjusted kids, all in all. 

Just continue to do what you can to show love to your children!  Snuggle, read them a book, watch a movie with them.  Even though you are not feeling well, just give them that reassurance that they are loved, and use this situation as a learning opportunity to prepare them for the inevitable valleys they will walk through in life.

I would like to finish off here by sharing a beautiful song with you by award-winning Christian artist Natalie Grant.  Oh my!  This song has touched my heart so much in the past few weeks and I hope it will touch yours.  It reminds us that as Christians, we have HOPE, and this hope endures even through dark times.  And this hope is not just an optimism, but it is the hope of knowing Christ, and knowing that He promises to be with us throughout our lives, in good times and bad.  He gives us the strength to endure.

I pray that you will know Christ and His hope this Christmas and throughout the rest of your life. 

Back in the driver's seat

Today I had a realization.....a good one!  I finally feel like I am back in control of my life, back in the driver's seat!  Lyme has moved over.  It's not sitting in the passenger seat, nor the back seat.  It's in the trunk!

Yes, it's still with me, but I only notice it once in a while.....like that jug of windshield washer fluid in the trunk that clunks now and then when you take a corner.  But I am driving the car with my hands firmly on that wheel.  And it feels so good to no longer be ruled by the borrelia burgdorferi.

Returning to my teaching job this September has been great, even therapeutic.  I'm busy, my mind is active, and I'm so happy to be teaching my lovely students.  I love thinking about my lesson plans, my units, and YES, even the marking.  I'm honestly so glad and grateful to be able to keep up with the demands of my job.

Exercise is becoming another good routine that I'm putting into place, and that I'm happy to be able to do.  (Wow, I can hardly believe I'm saying this.)  A lot of flab built up since I got sick in 2011!  Laying on the couch, unable to even walk around the block, and feeding yourself comfort foods will do that, right?  It's time for me to get my body back in shape, build up my stamina, and tone those muscles.   

Finally, I feel so good to be getting my eating under control, not just for weight loss, but for good health and a healthy immune system.  For over a week now, I've been counting the "points" of everything going into my mouth (à la Weight Watchers).  I've set a weight loss goal for next July, so we'll see how that goes.  So far so good!

OK, so Lyme may always be with me, but it isn't (and shouldn't be) the focal point of my life anymore.  It is time to move on from that horror show.  It may pop by for a little unexpected visit now and then, causing me some physical symptoms, but I won't be inviting it in to wreak havoc on my emotions.  I have better and more meaningful things to do with my time.

   Forgetting what lies behind

and reaching forward to what lies ahead,

I press on toward the goal for the prize

of the upward call of God in Christ Jesus.

Philippians 3:13, 14

Carry Me

I've heard the song "Carry Me" by Josh Wilson on the radio a few times this week, and today, it really struck a chord with me.  I know that if this song had been around two years ago when I was deathly ill with Lyme disease, it would have helped me immensely....just giving me that reassurance that God is there, that He cares, that He carries me when I can't hold myself up, and that others share in this journey of suffering and fear and deliverance.   

I've already talked about how Sara Groves, an amazingly talented Christian artist, helped to sustain me through my dark days.  I also gravitated to God's Word.  As I walked through that valley of the shadow of death, I would visualize myself laying down in the green pastures, and walking beside the still waters of Psalm 23.  When worldly medical professionals suggested meditation as a way to deal with my anxiety, I chose to meditate on God's Word exclusively.  Why would I need man-made things to meditate on when the Creator of the Universe had all of the answers I needed?!

I love how Josh Wilson juxtaposes his "sinking sand" with God's "solid ground".  (See Matthew 7:24-27.)  If you are ill with Lyme disease, or some other chronic illness, I encourage you to place your feet firmly on that solid ground that only God can provide.

Here is Josh Wilson's song to encourage your heart.  And click here to read about Josh's personal story behind the writing of "Carry Me".

Yolanda Foster.....inspiring

Well you learn something new every day!  I discovered this video today on one of the Lyme sites that I've "liked" on Facebook.  It's of Yolanda Foster giving a very emotional and inspiring speech at the Lyme Research Alliance Gala recently.

Perhaps you've heard.....Yolanda has Lyme disease.  I had never heard of her before as I have never watched the reality TV show she is involved in, The Real Housewives of Beverley Hills.  But I have just discovered who she is married to!  David Foster!  Yup.....our own Canadian music man. 

Yolanda's speech brought tears to my eyes.  (And I'm not typically a crier!)  But it really hit close to home.  As I listened to her experience, it brought back the memories of when I fell ill.  My story was so similar to hers......the fatigue, the brain fog, the clueless doctors. 

If you have Lyme disease, you will really empathize with Yolanda.  If you don't have Lyme, what I hope you will take away from her speech is the seriousness of this illness and the need to protect yourself from tick bites (and mosquitoes and black flies).

Lyme is everywhere.  It discriminates not.  No one is immune.

A very Merry Christmas to you!



Dearest friends in the Lyme world,

From the bottom of my heart, I wish you the happiest of holidays, a joyous Christmas, and healthy New Year! 

May 2013 be a year of good things for all of us....improved health, remission from Lyme disease, a better educated public, and a government ready to help those afflicted with this awful infection through the creation of a National Lyme Strategy in Canada.

As I look back on the past year, I have been so blessed by this "cyber world"!  I am grateful for those who have Lyme blogs who I have been able to connect with on a personal level, for those who have contacted me asking for help, and for anyone reading my blog who might find something helpful there.  Yes, I am grateful for all of you, because your empathy has helped me cope, and others among you (namely those who have e-mailed asking for help) have helped me find a greater purpose in my own struggles with this illness.  I am humbled to be able to help guide others out of the Lyme maze.

This morning, as I listened to Pastor James Macdonald's broadcast on his radio program called "Walk in the Word", he had a great message which left me with food for thought:

                                      "It's never too late.  Wait."

His message was about waiting on the Lord for what we need, and it got me thinking about how much waiting there is in Lyme recovery.  The progress is so awfully slow.  We must cling to hope and learn to wait and be patient.  But this is not an empty hope!  It is the expectation of good things to come out of our circumstances, whether we are fully healed on this Earth or not. 

Jesus will provide us with what we need to get through this rough time, to persevere, to endure.  Without this knowledge, I don't think I could have held on.  I kept thinking of that expression, "When you get to the end of your rope, tie a knot and hang on."  In those dark days of illness, I would picture myself hanging onto that knot!  Thanks to God, I did.  I waited, and waited, and waited, and over time, my treatment began to heal my body and mind.  I still think it is a miracle that I am perfectly well today (well....let's call it 95%) and able to live a normal life.

If you would like to listen to Pastor James Macdonald's audio broadcast in full, this came from his series entitled Jesus, the Promise:  Wait for Him - Part 3.  The audio broadcast can be purchased from his website here.

Once again, have a blessed Christmas as you wait on the One who can do all things, and who will provide in ways beyond comprehension, for those who put their trust in Him, and Him alone.

THE END

Today is the day of No Mores!!!!!  I just got off the phone with my Lyme-literate medical doctor.  After 18 months of treatment for Lyme disease, I'm now D*O*N*E!!!  Yep!  No more antibiotics!  No more medication side-effects!  No more drug claims to submit!  No more bumpy rides through Michigan on I-69 every 6 weeks!  No more visits to Frankenmuth!  No more visits to Birch Run! (Wait a minute, what am I saying? We'll probably squeeze in Frankenmuth and Birch Run now and then, just for old times' sake!)

Thank you, Dr. L, for saving my life!  But the glory goes ultimately to God, who guided my steps, led me out of this crazy maze, and walked with me the whole way.  My prayer is now for those who will come after me, who will face these similar struggles.  I will do whatever I can to help anyone who asks, and to fight for changes in the way Lyme disease is recognized and treated in this country.  No one should have to go through this when we have the knowledge and ability to prevent this kind of suffering.

If you, or someone you know suspects that they may have Lyme disease, it is important to be evaluated by a Lyme-literate medical doctor.  Remission is definitely within the realm of possibility, with the right treatment.  I am living proof of this!

All we need is hope

It is amazing to see what hope can do for our soul!  Lymies need hope and need to hear success stories to help them persevere through the rough times.  I think it's a fantastic idea that my friend and fellow Lyme blogger from Lymed out has decided to include a 'Success Stories' tab on her blog.  I was honoured to be the first one interviewed for this, and I hope to see dozens more send in their success stories.  We need to hear them, especially when there is so much negativity surrounding this illness, such as:

- Disbelief from our doctors
- Suspicion of U.S. Lyme labs
- Lack of support from family members who do not understand the issue and who have not walked in our shoes
- Fearmongering about long-term antibiotics
- Denial of insurance because your illness is not recognized

And the list goes on.

Be careful what you search for on the internet.  You will find a lot of negative things there.  Search for the stories with the happy endings, and believe that that could be YOU!

One of the first stories that gave me hope was the story of Michelle Backes who made a YouTube video about her struggle with and recovery from Lyme disease.  It really helped me to carry on and understand that there was a real possibility that I could recover!  You can watch it below.

Thank you, Michelle.

Part 1

Part 2

Naturopaths could be our saving grace

The archived CBC News article below outlines the expanding role of naturopaths in Ontario.  I learned today that effective March 2013, naturopaths here will be permitted to prescribe antibiotics to their patients.  This is welcome news for Lyme sufferers!  I believe that naturopaths will be much more likely to diagnose Lyme disease because they are not biased by the outdated IDSA guidelines.  I believe they understand the Lyme situation at a much deeper level, and are more open to learning about it.  They could be our saving grace!  I just hope that they will not be constrained by the IDSA guidelines and investigated for 'unorthodox' use of antibiotics for Lyme disease cases.  Then, we would be back to square one.

Update:  It was explained to me by an assistant of Dr. Murakami that naturopaths have their own college which is different from physicians; therefore, they are not bound by the IDSA guidelines.  The College of Naturopaths in B.C. has Dr. Murakami as their resource person for Lyme disease.  I guess our Ontario College of Naturopaths will have to find someone to train and lead our naturopaths.  Anyway, this was really good news.

After extensive lobbying efforts, naturopaths across Canada are getting governmental green lights for greater prescribing rights.

Last Updated: Monday, November 9, 2009 | 4:51 PM ET

Anna Sharratt CBC News

Need an antibiotic for that nasty lung infection? Your naturopath may soon be able to prescribe it.  That's because naturopathic doctors are among a group of medical professionals that are pushing for expanded prescribing rights — and they're recently seeing success.

Ontario just became the second province in Canada to get the green light for increased prescribing rights for naturopaths. British Columbia granted its naturopaths the right to prescribe a greater number of medications — as well as high-dose vitamins, amino acids, hormones, botanicals and herbs — in April 2009.

The announcement follows the granting of more powers to other health professionals, such as midwives and registered nurses.

On Oct. 20, the province's standing committee on social policy voted to amend Ontario's Naturopathy Act through Bill 179, allowing naturopaths in the province to prescribe, dispense compound or sell a drug listed in the regulations.

The bill is expected to be approved by the end of the year.

Drugs still require regulatory approval

The news is being welcomed by naturopaths across the country. "We see it as a very positive step," Shawn O'Reilly, executive director of the Canadian Association of Naturopathic Doctors in Toronto, told CBC News. "It will allow access to naturopathic doctors to prescribe drugs and supplements formerly off limits."

Though naturopathic doctors will still be restricted in the types of drugs they can prescribe, O'Reilly says they will be able to provide patients with medication they would otherwise have had to seek at walk-in clinics and emergency rooms. She says this decision will decrease ER wait times, and clear the way for speedier treatment for the acutely ill.

While the amendment increases the number of medications naturopaths can prescribe, it is far from being a carte blanche. Many drugs will still be off limits to NDs, such as psychotropic medications, including lithium, which affects the mind and emotions, and chemotherapy drugs. In B.C., these drugs currently can only be prescribed by physicians, said Christoph Kind, president of the British Columbia Naturopathic Association in Vancouver.

He says the list is still under review by the province's regulator, though he foresees acute-care drugs, such as antibiotics, to be included under the new prescribing rules.

Thank you, Sara Groves

Here is another song to calm your soul.  When I was really ill last year, I was looking for something to soothe me, and I grabbed one of my Sara Groves CDs off the shelf.  I put on the song, "It's Going To Be Alright".  Wow, did I ever feel God talking to me through that song!  I was suffering from horrendous insomnia from the Lyme disease and I felt like I was on the brink of death!  Sara sang right to my soul.  She said:

"It's going to be alright.  It's going to be alright.  I can tell by your eyes you're not getting any sleep, and you try to rise above it, but feel you're sinking in too deep.  Oh, I believe, I believe that it's going to be alright.  It's going to be alright.  I believe you'll outlive this pain in your heart, and you'll gain such a strength from what is tearing you apart.  Oh, I believe, I believe that it's going to be alright."

That was a message I needed to hear right at that moment.  And you know what?  It WAS alright!  I outlived that pain, and did gain strength from it.  (See Romans 8:28)

I had the opportunity to see Sara in person when she did a concert at my church in August.  What a genuine, open person with a heart of gold!

You're wonderful, Sara.  Thanks for helping me through a very dark time.

It's Going To Be Alright

by

Sara Groves



A story you will never forget

It is so worth it to take the time to watch such an amazing story of love, suffering, faith, and hope.  I continue to be in awe of this Canadian couple, following Christa on Facebook.  She continues to do remarkably well and has jumped back into life with both feet.  I am so glad their video is back up on YouTube to show the world the suffering imposed upon Lyme victims by the medical community who is so terribly ignorant of this illness.  Go grab a cup of tea or coffee, and settle in for an hour to share Christa and Justin's journey with them.

Our Story - Life & Lyme

Justin and Christa Vanderham

One week down.....

 

Well, it was back to work this week.  Back to my regular job as an elementary school teacher.  And I have loved every minute of it!

 

I had no idea, until I became ill with Lyme disease and was forced to take over a year off work, just how satisfying and therapeutic it is to work.  It's funny, because prior to my illness, I had been thinking about how wonderful retirement would be, and I secretly wished I would win a lottery or something and be able to quit this very busy and often stressful job and spend my days in leisurely activity or caring for my home.             

 

I did experience a few months of that 'freedom' towards the end of my sick leave, when I was stronger and felt better.  My kids are in school full-time, so I had a fair bit of time on my hands during the day.  But to be honest, it wasn't what I imagined it would be.  I really wasn't motivated to 'care for my home' like I thought I would.  Laundry piled up, and I constantly felt 'behind' in everything.  And that was very weird for me, who is usually extremely organized and on top of things.

 

One thing I learned about myself is that having an excess of time on my hands is actually a de-motivator.  Because I knew I had lots of time in my day, I felt I could put off various household chores until later.  My 'to do' list got quite long, and things just weren't getting crossed off.  Then, I started to get stressed out about that, as well as my lack of motivation!

 

The solution to this was.......going back to work and getting busier!  How ironic.  Returning to my job has forced me to be up and dressed at the same time each day, keep up with the laundry and household chores, and plan my time well.

 

I also realized just how much I missed the adult, social interaction of work.  I like my colleagues, and it was so nice this week to be in my old, familiar environment.  I've spent the past 13 years at this school, so it's my home away from home. 

 

I've also been so happy to meet my new students and have some fun with them this week as we get organized, get into our routines, and get to know one another.  So far, the classes I teach have been lovely.

 

This is not to say that there won't be stressors along the way this year.  Report card season comes to mind, when teachers work non-stop at home for a couple of weeks.  Behaviour issues with a few students are bound to crop up, too.  I'll have to find ways to de-stress.  I know how important it is to keep the stress under control so that one's immune system doesn't weaken and give the Lyme a chance to gain a foothold.

 

Adequate sleep, regular exercise, and healthy eating will need to become priorities in my life to keep this illness in remission.

 

So all in all, this has been a good week.....a great beginning to a new chapter in my life.

 

I'm grateful for my job.  Just one more lesson that Lyme has taught me.

 

Casting Crowns - "Praise You in This Storm"

Simply listen.  Nothing more needs to be said.

Light at the End of the Tunnel

This is how I felt today as I finished up my appointment with my LLMD.  Here I am, nearing the end of this long, dark tunnel called Lyme, ready to emerge into the beautiful light of day!  The end of treatment is nearing.  It's so close I can see it! 

I've been feeling exceptionally well for the past month, with just minor, tolerable symptoms here and there.  The fatigue has definitely improved, and I've been able to go about my day without too much difficulty.  I'm headed back to work as a teacher in one week!  That's exciting!

Here are some questions I asked my LLMD at this appointment, and these are the answers he gave me.

1. What if all of my symptoms don't ever go away completely?  How will we determine the right time to end treatment?
Answer:  It's sometimes hard to tell if certain remaining symptoms are caused by the Lyme or by the medications themselves.  As long as I continue to improve, we want to continue to push the treatment.  But if improvement stops, and I'm feeling quite well, then perhaps it's time to try to go off of the medications and see how I do.

2. When do you think I'll be done treatment?
Answer:  He thinks I should probably be able to go off all medications around the new year.  He doesn't like to stop antibiotics for teachers at the start of the school year (due to the stress of the situation.....and we all know that Lyme does not react well to stress.)

3. Can we begin to space out the appointments a bit more?
Answer:  Yes, we are at a point where we can go a couple of months, and perhaps even phone consults as long as I'm feeling well day to day.  (Wow....was I glad to hear that!  It sure would be a great cost saving to have just a phone consult.  No 3-hour drive to and from, no hotel expense, no restaurant meals.  Sign me up!)

4. What do you think of the new blood test - the Borrelia culture by Advanced Labs?
Answer:  The test is not perfected yet, and is expensive at $600.  It's not worth it.  (Nor does he feel that the CD57 is worth it, in his clinical experience.  The CD57 numbers just don't always correlate to how a patient feels physically.  He prefers to go by symptoms, and how you're feeling to determine end of treatment.)

5. When I finish up the antibiotics, could I go on herbal anti-microbials to help keep me in remission, such as Banderol and Samento?
Answer:  Yes, those herbals help some people in the remission stage; they're not as good during the intensive treatment though.  They can be purchased online and aren't too expensive.

6. Will we attack the cyst form of Borrelia again with Flagyl or grapefruit seed extract?
Answer:  Since my liver enzymes were elevated on the Flagyl last time, we won't use that one again.  I can do grapefruit seed extract, but we'll leave that for a while, since it can make some patients feel ill (....and I'm going back to work, so the timing isn't right.)  With some patients, he never prescribes Flagyl at all, and they do just fine.  (It depends on the person and their symptoms.)

Wow......it goes to show that there is no real recipe for treating Lyme disease.  It's an art.  LLMDs evaluate your symptoms carefully, and choose the antibiotics that they feel will best address your particular situation.  Sometimes it's trial and error.

I'm grateful for my LLMD, for his experience and guidance.  I'm grateful that I'm being cared for by someone who has treated over  3 000 Lyme patients!

Thank you so much, Dr. L, for caring for your patients, for going out on a limb for us, and for continuing to learn through your practice and conferences, in order to provide the best care for us.

You truly saved my life.  May God bless you!

Know where your help comes from

This past week, I've felt the Lord nudging me back in His direction.  When exactly did I start to stray, and begin to rely more on myself and earthly things or other people, rather than on Him?  I think that started to happen as I began to feel better, physically. 

When I was really ill last year, I literally threw myself at His feet, praying for the things I needed most to survive: 

• endurance
• sanity
• restored sleep

I leaned on God like I've never leaned on Him before.  I cried out to Him, through sobs of fear and anxiety.

And He carried me.

At the time, a friend of mine told me that in situations like this, God usually doesn't heal 'overnight', but over a period of time.  I knew this would probably be the case for me.  He was going to teach me trust and patience.

So I waited.  And I prayed.  And I waited.

In His timing, He answered my prayers, and granted me each of the things I had asked for.  My anxiety got under control.  Just last month, I was able to stop taking sleep medication, so my sleep has been restored.  And through His strength, I managed to endure the last year and a half and come out the other end with a renewed perspective on life and faith.

But new fears are creeping back in!  It's as though I hadn't learned anything in the last year!  And this reminds me of my frail humanity, my propensity to sin, and how easy it is to forget where my help ultimately comes from.

So what are my fears?  I am returning to my teaching job in September, just a few short weeks away.  Will I be able to handle it physically?  What if I'm too fatigued?  How will I keep the stress under control?

As I consider a potential 'end of treatment' in the next while, I find my thoughts turning to worry.  Will I relapse?  Many people do.  What will I do if that happens?  I won't have any more sick days to rely on, and getting long-term disability for something as controversial as Lyme disease would be an uphill battle.

So today, I got a reminder from the Lord, via another Lyme sufferer.  Thank you, Christa.  This video was on my Facebook news feed this morning.  I need to keep my eyes fixed on Jesus who WILL take care of me and guide me and give me peace in all of the circumstances of my life.

Kari Jobe

Steady My Heart

And I would like to add one more song by Joy Williams, whose lyrics also help to strengthen me and remind me that my Heavenly Father is my Rock and I need not be afraid.

Joy Williams

Unafraid



A story with a happy ending

One thing people love is stories, especially happy stories with happy endings.  They lift us up and give us hope.  And I'm not sure how many of us would be able to get up in the morning, and carry on, without some hope in our hearts.

Lyme disease CAN be managed!  Whether or not it can be truly 'beaten' remains to be seen and to be researched.  But it IS possible to recover and live a normal life again.  Sometimes, it takes years, but it CAN happen.

Do not give up hope!

Here is a great article that I read on LymeDisease.org.  So encouraging.  So uplifting.  I love how the 14 year old girl, and the 20 year old woman (both the same person!) are juxtaposed.  So well done.  So effective. 

TOUCHED BY LYME: 20-year-old’s advice to her 14-year-old self: “You gotta have hope” 1st May 2012

The young woman in the photograph is doing a cartwheel—something she couldn’t do six years ago, when she was wheelchair-bound from Lyme disease. At that time, her body was wracked with pain, 24-7. She had a cascade of other symptoms as well, which made it impossible to go to school, to carry on with normal daily activities, and often, even to get out of bed. Life seemed bleak indeed.

Yet, out of her pain and misery, Rachel created a gift that has just recently resurfaced. In March 2006, she spoke to a video camera about how she was feeling and her frustrations with doctors who refused to recognize that Lyme disease even exists in California. It is a visual record of a young teenager trying to make sense of her desperate situation. Her demeanor seems calm, but if you study it closely, you can see the fear and vulnerability trembling below the surface.

But here’s the twist. Last weekend, after she re-discovered her earlier footage, Rachel recorded her present, healthy, walking self, responding to the same questions her younger self had answered. She edited the old and new together, cutting back and forth between 2006 Rachel and 2012 Rachel.

Together, the two Rachels have valuable wisdom to impart. Take a look:

Rachel currently attends college in northern California.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.

Still on the roller coaster, but life is good

If you have come to my blog because you have been diagnosed with Lyme, I want to give you some encouragement.  Many blogs out there appear to focus on the negative, not because the writers are 'being' negative, but because Lyme is such an up and down illness.  It takes a long time to get well, so Lyme sufferers often feel unwell during their treatment.

I want you to understand that Lyme treatment is like being on a roller coaster.  You feel a bit better, then you feel ill again, then you feel OK for a bit, and this repeats itself over and over.

Once thing that contributes to not feeling well is the 'herxheimer reaction'.  This occurs when beginning antibiotic treatment, or changing antibiotics.  As the bacteria begin to die off, the body is overloaded with the dead spirochetes and is unable to dispose of them quickly enough.  Other articles I've read state that the dead bacteria give off neurotoxins.  You may feel flu-like, and your symptoms will feel worse.  But it DOES pass. 

When I started on doxycycline one year ago, I had a herxheimer reaction on my third day of treatment.  I felt flu-like, had the chills, and was tired.  It lasted for six days.  I have had many herxheimer reactions over the past year.  Lately, they seem to produce a terrible fatigue that lasts a couple of weeks.  I think I'm in the middle of one right now.  My doctor said to stop my antibiotics for a few days to help my body catch up with toxin disposal. 

There are many other things a person can do to help rid the body of toxins:  drink lots of water, squeeze the juice of a lemon into your water, take a bath with 2 cups of epsom salts.  Some people have an inability to get rid of toxins and have to take medications such as cholestyramine to help.

It's wonderful when a 'herx' passes, because then you usually feel better than you did before the herx.  That has been my experience, anyway. 

I started feeling very good around June 1, which is one year since starting antibiotics.  When I first saw my LLMD in June of 2011, I asked him how long it would take for me to heal, and he said about a year.  And what do you know......it was a year!  I was overjoyed in June, as I had more energy and was feeling so good, almost 'normal' on some days.  I started wondering when I might go off my meds!

But now, in July, I've had a bit of a backslide.  I started getting fatigued once again about a week ago.  Why would this be?  Am I having another herx?  Am I reacting to the full moon?  (Apparently, Lyme symptoms are worse then.)  I also found out that my thyroid levels have gone out of whack again, and I'm a bit hypothyroid.  That could certainly be contributing to the tiredness, too.  Hopefully, the thyroid problem will correct itself soon.  I discovered the root problem:  A pharmacist had ADVISED me that it was OK to take my Synthroid (thyroxine hormone) with my minocycline each morning.  Apparently, this is a no-no!  After double-checking with 2 other pharmacists and 2 doctors, I've been told not to mix the two.  The minocycline was likely preventing the full absorption of the Synthroid.  It's too bad I was ill-advised 4 months ago, and now will spend my summer 'tired'. 

I see my LLMD this week and have lots to discuss with him.  We might change up my meds.  Not sure.  I'll keep you updated.

But just so you know, and this is the encouraging part, I really AM feeling quite good, despite some lingering symptoms.  I am able to be a wife and mother, and do all of the things I need to do:  cook, clean, laundry, drive kids around, enjoy a movie with hubby, have company overnight.  I could not do ANY of those things a year and a half ago.  So, the antibiotic treatment has been worth it.  It has given me my life back. 

Things CAN improve......persevere and never give up hope!