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.

Monday, August 27, 2012

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!

Friday, August 24, 2012

Best Ever Caesar Salad

OK, if we are going to try to get the chemicals and toxins out of our meals, one good place to start is with salad dressings.  Have you read those labels lately?  Here are a few of the yummy ingredients:

potassium sorbate (maintains quality)
calcium disodium EDTA (maintains flavour)
propylene glycol alginate
polysorbate 60
spice (beware of this.....it probably means some MSG)
colour

There are so many salad dressings out there that you can make yourself, quite easily!  But at the very least, if you don't have the time, look for all natural products.  In my city, we have a wonderful independently owned grocery store that has a wide variety of homemade salad dressings.....with NO chemicals!  It's convenient, but healthier than other bottled brands you find on your grocery store shelf.

But if you don't mind whipping up your own dressing, I have an AMAZING recipe for you for Caesar Salad dressing.  This is by far the BEST Caesar dressing I've had.  I'm addicted!  It is so flavourful, and has a bit of a bite due to all of the raw garlic.  It's not a creamy dressing, but I actually prefer it to the creamy variety.  So here it is.  I hope you and your family will enjoy it!

Caesar Salad

1 large head romaine lettuce - cut or tear into pieces
1/2 lb. bacon cooked and broken into small pieces
1 c. bread croutons
3/4 c. parmesan cheese - to your taste

Dressing

Combine in a jar:

6 tbsp. vegetable oil (I use grapeseed oil which is a much healthier alternative to other oils.)
1 tbsp. olive oil
2 tbsp. white vinegar
1 tbsp. lemon juice
1 tsp. salt
1 dash tabasco sauce
1 dash worcestershire sauce (Look for an organic brand with no MSG.)
1 tsp. chopped parsley (optional)
1 tsp. finely chopped garlic (I use three cloves.)
1 pinch each - sugar, pepper (white if you have it), dried mustard, and tarragon

Shake well to combine.  For the best flavour, make the night before or at least 2 hours ahead of time.

Tuesday, August 21, 2012

Eating well

It's important to eat well when you are suffering from a chronic illness.  Eliminating certain foods, like yeast and sugar, can help to minimize yeast overgrowth and inflammation in the body.  Not that I've been the perfect example to follow.  It really is hard to give up foods you love, because they are so comforting when you're feeling so awful.  I really do sympathize with you.

What you can do is try to find substitute recipes for the things you love.  Can you switch from sugar to xylitol or stevia?  If you need to avoid gluten, can you find a gluten-free bakery or make bread-like recipes with almond meal instead of flour?  The internet provides some great resources at our fingertips.  Here are a few blogs you can check out:

Good Food
Elana's Pantry
Healing Cuisine

It is most important to try to get toxic food out of our lives.  Easier said than done, I know!  The more we prepare our own food, rather than relying on pre-prepared, boxed, or processed foods, the easier it will be to avoid toxic chemicals, such as MSG. 

Here is a recipe for a taco filling using spices from your kitchen, rather than relying on the taco seasoning packets you can purchase at the grocery store.  They have a ton of sodium and MSG, and should be avoided.  You can use this taco filling for tacos, burritos, or in a taco salad like I did.

This was our dinner tonight!

Taco Salad


On a plate, layer the following:

chopped romaine lettuce
fresh diced tomatoes
shredded cheddar cheese
ground beef cooked with homemade taco seasoning (recipe to follow)
crushed nacho chips
sour cream
salsa (optional)

Ground Beef Taco Filling (Adapted from Maximized Living Nutrition Plans)

First, make the taco seasoning mix by combining the following ingredients in a small bowl or zip lock bag:
2 tbsp. chili powder
2 tbsp. flour
1/2 tsp. salt
2 tsp. cumin (I use 1 tsp.)
1/2 tsp. onion powder
1/2 tsp. garlic powder
2 tsp. oregano (I use dried basil instead)
1/2 tsp. cayenne pepper (I use 1/4 tsp.)

Add the taco seasoning mix to browned ground beef (1 - 1 1/2 lbs.) along with 1/2 - 3/4 cup water and cook until reduced to desired consistency.  If desired, you can add 1/2 cup salsa to the pan while heating.

Enjoy!

Sunday, August 19, 2012

Lyme treatment: clinical evidence vs. scientific data

I'm providing a link to an excellent article written by Mary Beth Pfeiffer of The Poughkeepsie Journal.  She summarizes the issue so well, and refers to the studies that physicians in both camps (ILADS vs. IDSA) use to prove their case.

Lyme Disease:  Antibiotics fuel debate

Sorry, I still have to side with ILADS and the clinical evidence camp!  How can I not?  I have been through it personally, and know that the long-term antibiotics have helped to improve my symptoms.  Study or no study......one CANNOT deny the clinical evidence of thousands and thousands of patients who have received long-term antibiotic treatment from Lyme-literate physicians.

To the IDSA - Please take your head out of the sand!  Set aside your biases for just a moment to consider what so many people are telling you.

To ILADS - We know that there is an abundance of clinical evidence, and we know that the antibiotics work.  But we need to push for scientific studies and more research.  Once this is all proven 'scientifically', the problem will be resolved.  Please continue to push for this.  This is the only way that both sides will be brought together.  I truly admire your efforts, your persistance despite opposition, and your intelligence.  Thank you so very much.

Saturday, August 18, 2012

Faces of Lyme

Thank you to these 4 women who participated in this short video interview by The Poughkeepsie Journal.  I believe that it is our stories that are causing politicians and the public to sit up and take notice of this illness.  And this is one of the reasons for my blog - to add my story to the thousands of other stories out there.

How can we continue to deny all of this clinical evidence for chronic Lyme disease?  Well, the answer is, we can't.  There are just too many people with the SAME story to ignore! 

As I listen to these women, I feel like it is 'me' talking.

Faces of Lyme - If the video does not appear when you click on the link, you will see a search bar on the website.  Just type in Faces of Lyme, and the video should appear in the group of recommended videos.  Click on it from there.
*I seem to be having trouble accessing the video a second time from my computer.  I think it may restrict multiple viewings because they want subscriptions.  Please let me know if you are not able to access the video.  I have had no trouble accessing it from Facebook.  Go to the California Lyme Disease Association on FB, and find the status update there.

Thursday, August 16, 2012

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



Monday, August 13, 2012

Managing Your Health Care

When you begin treatment for Lyme disease, you need to be an active participant.  You need to find a system to keep yourself and your information organized.  This may be very difficult to do, given the way that you feel and the mental fog that you have.  Perhaps you can find someone to help you with this.  It's very important.

When I became ill, and before I knew what was wrong with me, I had a small coil notebook that I wrote everything down in - phone calls I'd made, things I had found on the internet, doctors I had contacted, symptoms I had, etc.  I kept my loose papers in a file folder, things such as test results.  However, over time, I outgrew this method!  I had too many things to file, and I really needed a better system.

So off to Staples I went, and I bought a big binder and some dividers.


My dividers have the following headings, but you can tailor yours however you like:  History, Lab Work, Doctors' Reports, My Blog, Managing Lyme Disease, Dr. L., Miscellaneous.


The binder has filled up!  I may soon need a bigger one. 

Before you visit your LLMD for the first time, it will be very important for you to have all of your previous doctors' reports, test results, etc. available for him/her.  It is also recommended that you write out a history of your illness:  when did your symptoms start, what symptoms do you have, what doctors have you seen and when, etc.  Write it out like you were just telling the story to someone, then afterwards, you (or someone else) can summarize it in point form.

During your treatment, it will be very important for you to keep track of your symptoms, so that you can see the progress you are making, and so you can give your LLMD an accurate report when you see him/her each time.  It also helps you to figure out if you might be having any herxheimer reactions

Some people use a symptoms checklist, which is a great idea.  You can write out all of your symptoms in chart form, and rate them daily or weekly on a scale of 1 to 10.  You can find sample checklists by doing an internet search or checking out other Lyme blogs.

I chose to make jot notes on a calendar.  That was a better system for me.


Before my appointments with my LLMD, he asks me to write a paragraph about how I was feeling the past 6 weeks.  I can then just look back at my calendar and summarize what I had jotted down.  He also has me fill out a symptom checklist at his office each time.

Look at last month's jot notes:


That's right!  There are NONE!  That's because I'm feeling quite good.  I really don't have much to write about, except for tiredness and a few minor sporadic symptoms. 

I hope this information will be a help to you in learning to manage your health care. 

Monday, August 06, 2012

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.