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, January 28, 2013

Disappointment on the ice


I'm so frustrated by what Lyme disease has done to my poor body, even though I've practically recovered from the illness.  Yes, I'm dealing with a small relapse at the moment, but I'm not really talking about that.  I'm talking about the residual effect Lyme has had on my body.  I'm definitely not the same woman I used to be, health-wise.  I remember reading a couple of years ago a quote from someone who said, "Once you have Lyme, you never feel the same again."  That seems to be true, even if you've finished treatment and gone into remission.

First, there are my aching muscles and joints.  Not really a Lyme arthritis.  Just achiness.  When I get out of bed in the morning, I feel like an 80 year old!  My feet really hurt, and I hobble to the bathroom.

Second, there is the tiredness.  It comes and goes during the day.  Sometimes I think I feel 100%, and then 30 minutes later, I feel like I need to lay down and rest for a bit.  It's a weird kind of fatigue.  It's certainly NOT the crippling fatigue I had during the height of my illness, when I could barely wash and dry my hair.  But it's a "come and go" kind of thing.  I just never feel energized for an entire day.

Then, there's the weight gain.  Oh my!  I've never weighed so much in my life....not even when I was pregnant!  It's funny how some people lose weight like crazy with Lyme disease, and others gain.  I know that the meds I was on didn't help - sleep meds, an SSRI, in addition to my many antibiotics.  The SSRIs, which are an anti-depressant, are notorious for packing on the pounds. 

I guess I'm a little ticked off at how Lyme has messed things up in my life, even though I'm supposedly all better now.  Yesterday, for example, I decided to go to the skating rink for some exercise and to try out my new skates.  I decided to invest a little more in this pair of skates, as I had my last ones, so I went to a skating apparel store where they could heat up the skate and mould the boot to my foot.  I just wanted a decent pair with good support, especially with the foot issues I've been having.

Now, although I love skating, I'm not a really good skater or anything!  No spins or jumps here.  I took some lessons as an adult 20 years ago, and became a lot more comfortable on the ice, learning some basics like how to stop, cross over, skate backwards, etc.  Really, I just love the feel of the experience.  So off I went to the rink yesterday with my brand new skates, happier than a bird with a french fry!

Disaster!  (Thank you, Lyme.)

After about 10 minutes on the ice, my feet started to ACHE with a pain I'd never felt.  It wasn't from the skates; they are actually comfortable.  It was from whatever is wrong with my feet now.  The ache was so bad, I went over to the players box and sat down.....and almost wondered if I'd need to remove the skates and walk in my stocking feet across the ice to get off!  It was THAT bad!  Then, I did a little self-talk, and convinced myself to just get up and tough it out.  Do a few more laps!  Maybe your feet will get used to it.  The skates are new.  You're breaking them in.  Don't be such a wimp!  So back onto the ice I went for several more laps.  But my poor feet just kept on hurting.  I got off the ice after about 15 minutes total.  What a disappointment.

So, what do I do about this?  Go to my family doctor?  Get referred to a foot doctor?  Go to a physiotherapist?  What?!  In the end, will any of them really be able to help me?  They all know nothing about Lyme disease!

That's such a huge problem with Lyme.  We always have to come up with our own solutions and treatment options.  There's no one around, locally, to guide me through this.

I guess I'll be talking to my LLMD about my poor feet.  By the way, I have a phone consult with him on Thursday to discuss the future of my treatment with my relapse.  We'll see what he says; I'll let you know.

Friday, January 18, 2013

Spelt - a healthier flour

I'm beginning to wonder why I don't have a food blog, instead of a Lyme blog!  In my search to find healthy recipies for my family and me, I keep coming across some good dishes that I must share.  And you know that somehow I'll manage to tie it into Lyme disease.  Here goes...

My first LLMD insisted on a yeast-free sugar-free diet for her patients.  Eating this way helps to prevent yeast overgrowth which is so prevalent with antibiotic use.  The sugar-free part is to help to stop feeding the Lyme bacteria, which loves sugar.

In some cases, people might even have to go gluten-free to feel OK.  As many of you will know by now, Lyme disease can wreak havoc on the digestive system, so it's important not to introduce foods into the intestines that will aggravate the already-inflamed tissues.

Over the years, I have learned about spelt flour, which is a cousin to wheat flour.  It is apparently more easily digested than regular flour, and has more protein and nutrients.  Therefore, it might be wise to switch to this type of flour for your baking, if you have Lyme disease.  A word of caution:  It still has gluten, so those on a gluten-free diet may need to stay away from spelt, too. 

The gluten in spelt has some different properties than the gluten in regular flour, so a few changes need to be made to your recipe if you choose to substitute spelt for regular flour.  Firstly, use 1/4 less liquid in your recipe.  The spelt gluten cannot absorb as much liquid as regular gluten.  Secondly, don't overwork your dough!  If you do, you may end up with an end product that is too flat, too dense, or hard.  So be careful!  I encourage you to do a little research online about spelt.  There are many bakers out there with much more experience than me in dealing with spelt.  I mainly use it in muffins or quick breads (e.g. banana bread).  I've never tried it in cookies or regular bread.

Tonight I was serving up a homemade soup, and I wanted some "bready" thing to accompany it.  I opened my cookbook called Babycakes, and there was a recipe for spelt biscuits staring me in the face.  By the way, BabyCakes NYC is a bakery in New York City that caters to those who need gluten-free products.  If you MUST eat gluten-free, then you MUST get a hold of this cookbook!  There are recipes for all sorts of breads, cakes, cookies, you name it.  And they look wonderful. 

Now to tell you the truth, I bought the cookbook long ago, when I thought I might need to go gluten-free.  But I never ended up pursuing that, and honestly, I don't really think I have a gluten intolerance.  So this cookbook, beautiful as it is, was just collecting dust on my shelf.  Until tonight.

Now let me reiterate that these biscuits are NOT gluten-free.  Most of the recipes in the book ARE gluten-free, but not the biscuit section.  They are a healthier choice, however, not only because of the spelt flour, but because of the coconut oil used in them.  They taste really rich, even without slathering them with butter.  And I love the salt sprinkled on top to give them a bit of extra flavour.
My batch didn't rise as well as I thought they would, but they were still delicious with the soup.

Spelt Biscuits


2 cups white spelt flour, plus more for dusting
1 tbsp. baking powder
1 tsp. salt, plus more for sprinkling
1/3 cup coconut oil, plus more for brushing
3/4 cup hot water

1. Preheat oven to 375 degrees.  Line a baking sheet with parchment paper.
2. In a medium bowl, whisk together the flour, baking powder, and salt.  Pour the oil and hot water into the dry ingredients and mix with a rubber spatula until fully combined and a dough is formed.  If the batter is dry, add more hot water, 2 tablespoons at a time, until the dough is sticky.
3. Dust the counter with spelt flour.  Place the dough on the prepared surface and drag it through the flour.  Pat the dough gently until it is 1 inch thick.  Using a 3-inch round cookie cutter, cut out biscuits and arrange them on the prepared baking sheet, leaving 1 inch between the biscuits so they can spread.  Brush each with oil and sprinkle with salt.
4. Bake the biscuits on the center rack for 8 minutes, rotating the sheet 180 degrees after 4 minutes.  The finished biscuits will have a golden, flaky crust.
5. Let the biscuits stand on the sheet for 5 minutes before serving.  Cool completely and store in plastic wrap at room temperature for up to 2 days.

Source:  Babycakes, by Erin McKenna

Thursday, January 17, 2013

Comfort



 
This is the scene at my house today.  My son is home sick from school with a stomach virus, and it was a late, late night last night as I cleaned up vomit and tended to his needs. 

Despite the drudgery, that little voice calling out, "Mom" in the night was sweetness to my ears.  My boy needed me.  Children need their mothers.  How nice it feels to be needed, and to have that ability to ease someone's pain.  When we're not well, we all want comfort, someone to love us and tell us that everything is going to be OK.  I could do that for my son, and despite my lack of sleep, and the fact that I'm writing this with the gas tank on empty, I was happy to be there for my sick child.

Honestly though, I wish I was the child in this picture, being held tightly by someone who loves me and knows how to take care of me.  Thank goodness my husband is a hugger!  He comforts me whenever I need it, and has talked me down from many ledges, metaphorically speaking.  Bless him.

But I still have the need to hear those certain words, "It's going to be OK."  With Lyme, no one can really say those things to us, can they?  This illness is so uncertain.

As I've mentioned before in my blog, I was left with no option but to turn to my Heavenly Father for the comfort and reassurance I needed.  It's sad to say that "I was left with no option", but to be honest, I often (wrongly) look for human comfort before spiritual comfort.  And that is why I learned so much from Lyme, spiritually.  It taught me where my hope should be at all times.  God left me with no option but to turn to Him, and He did this to teach me.  And truly, I'm totally OK with that.  God gave me the direction and correction I needed.

When I was feeling much better, though, I started to slide away from Him.  Not completely, of course, but as "life" took over again, I was feeling pretty good and pretty confident.

And here I am now, in a relapse.  Not quite "back to square one", but still left wondering how this will all play out, and what my future is going to look like.

And I need God again.  And I know He will take me back, and love me, and comfort me, because that's the kind of Father he is.

Thank you, Heavenly Father, for putting up with my flaws.  I'm so sorry that I ignored You for so long, and that it took a life-threatening illness to wake me up.  But thank you for that!  You knew what I needed.  You took something awful and made something good out of it.  I don't want to keep sliding away from You every time I get well, so please hold me close, because my grip is not as strong as yours.  I thank you for your comfort, and for reminding me that it's going to be OK, whether I'm healed or not.  Thank you for being the loving Father you are, and for taking me back again and again.  Amen.

I want to recommend a couple of prayer books.  One is listed in my "Books" link and was just an invaluable resource for those times when I had so much to say to God, but couldn't find the words.


 Prayers of Hope for the Brokenhearted by...

And this one, entitled Jesus Today, was brought to my attention by a friend of mine.  It is a daily devotional by Sarah Young who suffers from.......Lyme disease!  She tells her story at the start of the book.  It's all too familiar.  Anyway, I decided to buy the book because I knew that the daily readings would be from a perspective I could relate to.  I'm hoping they will speak to my heart.

 
I do hope that you will find peace and comfort from the One who can provide beyond our comprehension.  Open up your Bible or a prayer book, and let God speak to your heart today.

Sunday, January 13, 2013

Happy in the kitchen

Before Lyme got a hold of me, the kitchen was one of my favourite places.  I do like to cook and have a terrible obsession with cookbooks!  Give me a new recipe to try, and a glass of wine to sip while cooking, and I was in heaven! 

Then along came Lyme.  I hardly stepped foot in the kitchen for many months when I got sick, and relied on family, friends, and our church to keep us fed.  My wonderful sisters-in-law basically moved in and took over my kitchen, each taking her turn.  And I was so grateful for it.  As I laid on the couch, I could hear the clanging of pots and pans, the opening and closing of cupboard doors, and the sizzling of good food.  I remember those days vividly because our family room is right beside our kitchen, and for a time, noise really bothered me.  This is one of the many symptoms of Lyme.  I remember having a hard time with all of those noises I just described, but was still so thankful that my kids were getting fed.

Well, I'm so happy to say that I'm back in the kitchen.  Somehow, the same "love" of cooking hasn't returned...yet.  I think I've been so preoccupied with other things in my life lately -  e.g. staying healthy, getting reaccustomed to working again, balancing my time - that cooking has become a bit of a chore these days, which is sad for me.  Maybe it's because I can no longer have my wine! LOL  Yes, I had to give it up because of all of the meds I was on, and in addition, alcohol and Lyme just don't mix.

Tonight I had the opportunity to make a wonderful French onion soup for my family, and you know what?  I was actually HAPPY in my kitchen.  I put on my music and had a fine time cooking and humming away.  So, I thought I'd share with you the wonderful recipe I used.  Honestly, it's the BEST French onion soup recipe I've made......soooooo delicious!  I hope you will enjoy making it.  And I hope that whatever pastime you enjoy will bring you some pleasure, even if you're not feeling the best.  Meaningful activity is so good for the mind and the soul.

Bon app├ętit!


French Onion Soup
 
1 pkg (60 g/2 oz) dried porcini mushrooms
1 cup boiling water
5 tbsp. butter
3 sweet onions, sliced (I used 3 medium-sized Vidalias)
¼ cup white wine (I used white cooking wine from Loblaws)
2 leeks, white parts only, cleaned and sliced (Note:  Leeks are sandy inside.  They require a good rinse in between the layers.)
2 shallots, chopped
2 cloves garlic, minced
2 tbsp. each chopped thyme, rosemary (I didn’t have any fresh, so I used about 2 tsp. dried Herbes de Provence)
3 tbsp. all-purpose flour
2 cups each chicken and beef broth (I used one can low-sodium chicken broth, and one can regular beef broth.  When the water is added, it came to 3 cups each.  So, I just increased the flour above to 4 tbsp.)
salt and black pepper (I skipped the salt)
4 slices crusty bread
4 slices fontina cheese (I used shredded Monterey Jack and Mozzarella)
chopped fresh chives (I skipped this, even though I actually have them on my deck!)

Preparation:

1. Cut dried mushrooms into pieces; place in heat-safe bowl.  Pour boiling water over mushrooms; set aside.

2. In saucepan over medium heat, melt 3 tbsp. butter.  Add onions and cook until well browned, stirring regularly, 15 min.  If onions begin to brown too fast, add water.  When onions are browned, add wine and stir to deglaze pan.  Add leeks, shallots, garlic, thyme, rosemary and 2 tbsp. butter.

3. Increase heat to medium-high and cook until leeks tender, 8 mins.  Add flour; stir to coat.  Pour in broths, stir and bring to boil.  Add steeped mushrooms, reduce heat to simmer for 10 mins.  Add salt, pepper.

4. Heat broiler.  (Paula’s addition:  Add some shredded cheese to the BOTTOM of each bowl; then you get a surprise when you dig down!)  Ladle soup into 4 oven-safe crocks.  Top each with slice of bread and cheese.  (I used a crusty French baguette, and my bowls are quite wide, so I put 2 bread slices on top of each bowl.)  Arrange crocks on a rimmed baking sheet, place under broiler and cook until cheese melts and begins to brown, 2 mins.  Serve with chives.

(Paula’s note:  If you can, be MESSY with the cheese so it will melt all down the side of the crock, and get browned and hardened on.  Yum, yum, yum!)

Source:  Metro News, Oct. 3, 2011

Friday, January 11, 2013

Update on the relapse

Here I go again.  Sigh......

Obviously I've had a lot on my mind this week, and my thoughts have been swirling around, trying to make sense of this stupid relapse, and trying to access all of the methods and techniques I used during the worst days of my illness to keep myself sane!

My symptoms seem to be confined to two or three:  head/body vibrations (buzzing feeling) when I try to fall asleep (causing insomnia), a rumbling tinnitus in my ear, and tiredness (which may or may not have to do with the fact that I'm back ON sleep medication.)

On the medical end of things, here's the scoop.  My LLMD responded to my e-mail in a very timely manner (bless him!), and he told me to re-start my azithromycin and diflucan (for yeast).  Thankfully, I had some of these meds leftover, and I was hanging onto them for just such an occasion. LOL  (Perhaps I should have thrown them out when my treatment ended in November, then I wouldn't be in this mess!  Not that I'm superstitious or anything.) 

I also sought a second opinion from another LLMD, Dr. Marty Ross, who has a fabulous website and Facebook page called Treat Lyme and Associated Diseases.  Dr. Ross will answer brief questions on his Facebook page (same name as his website).  He told me that my symptoms are likely the result of a relapse, and that when the germ is not effectively killed off, then 6-8 weeks after stopping the antimicrobials, symptoms will return.  (Yep, I was at the 7 week mark.)  He suggested that it could also be from yeast overgrowth, which would cause an increase in cytokines, and would trigger the same sorts of symptoms as the Lyme bacteria would. 

Dr. Ross suggested that my next round of treatment include "cyst busters" to deal with biofilms, for 4 months.  OK...been there done that with Flagyl.  That wasn't so good, as the Flagyl caused elevated liver enzymes and I had to discontinue it after 2.5 months.  This time, I'm going to discuss the herbals Banderol and Samento with my LLMD, as apparently these herbals deal quite effectively with all three forms of the Lyme bacteria.  You can read all about Banderol and Samento on the Treat Lyme and Associated Diseases website.

I hope and pray that my LLMD will agree with the "other opinion", so that I can have peace of mind about how to proceed.  I really do feel that I need to tackle this again aggressively.  I don't want to do a patch job, and end up in the same place 6 months from now.

So, that's the physical side of things.  Next post, I'm going to discuss the mental/emotional side of what I'm going through.

Thinking of you all.......all of my cyber friends and strangers out there......hoping this post finds you well, or at least improving in your health.

Many blessings!

Sunday, January 06, 2013

Relapse or just a bump in the road?

I must admit that I'm worried.  Here I am, on the tail end of my Christmas holidays, ready to return to work tomorrow, and I've got a little problem.  A couple of Lyme symptoms have returned.  As you may recall, I've been OFF antibiotics since November 21, 2012, 7 weeks now, and that was a day of great celebration.  I was DONE!!! 

Well, perhaps I'm not actually done.  I guess we'll see what my LLMD has to say.  I hope I'll be able to speak to him soon for a phone consult.

The two symptoms that have reared their ugly heads once again are the soft, low rumbling sound in my right ear, and the body vibrations that came on as I was drifting off to sleep last night.

As soon as I felt those all-too-familiar vibrations, I perked up and began to PANIC.  And then try to sleep when you're in THAT state!  My poor hubby had to listen to my anxieties at 2:00 a.m., but I'm so glad he was there.  Bless his heart; he was wonderful and comforting.  Out of desperation, I took 1/2 of an Imovane (zopiclone) at 3:00 a.m. to get some rest, and at least I squeeked out 6 hours.

My anxieties are numerous:
- I DON'T want to have sleep problems again just when I've nicely settled back into my job and family life!
- I DON'T want to have to start to use Imovane again when I've finally gotten OFF the stuff!
- I DON'T want to start having anxiety and panic attacks over this!
- I DON'T want to fill my body with antibiotics again!
- I DON'T want to have to deal with the naysayers in my life again who have pretty much stopped harrassing me since I finished up treatment in November!
- I DON'T want to have to deal with my family doctor again, and have to explain about this "relapse" and why I'm on antibiotics AGAIN, and have them think I'm absolutely CRAZY!
- I DON'T want to travel 3 hours to my LLMD anymore!
- I DON'T want the out-of-pocket expense anymore!

I'm just so D*O*N*E with ALL of that!!!!!!!!!!!!!!!!!!!!!

I suppose that's enough to cause any sane person to have some anxiety.

But I'm resolving to keep my cool about this.  I MUST....lest I fall into a dark pit.  (Been there done that, and it's no fun.)

Yes, all those above thoughts raced through my brain in the middle of the night, but it's morning now, and I am going to have a new perspective:

- God got me through this the first time, and He will again.  He provided the support we needed, when we needed it.  He opened and closed doors at the perfect time, we managed financially, and I was eventually well again.  I need to trust Him.......He is the Great Physician.
- I'm dealing with the symptoms EARLY this time, which will mean a much shorter stint on antibiotics.
- If I need to take Imovane for sleep, I WILL be able to get off that drug at the appropriate time.  I did it before, so I can do it again.
- I have helpful counsellors that I can call on to help me through this.

Sigh.

If you are the praying type, I'd sure appreciate your prayers.

Thanks for listening to my little rant today.  Blessings to you all.