I never wanted to be a detective

One of the worst parts of Lyme is how it is all such trial and error, and there is so much "unknown" with this illness.  And it's unpredictable.  Even though I'm feeling pretty good on my meds these days, there are days when I'm "off", or when a weird symptom appears.  Last night, I got a bad case of diarrhea after dinner - 3 episodes over an hour or so. 

I tried to analyse the situation:

Is this from the Zithromax?  It can cause diarrhea, but usually I'm fine on it.
Or maybe it's a side-effect of the Banderol and Samento.  I've never taken them before now, so I have no idea what side-effects they will produce in me.
A herx!  Yes, it could just be a herx!  But I've never had diarrhea from a herx before.  Hmmm.
Maybe this is because I started eating well today, and my body is reacting to the lack of carbs and screaming out for sugar!
Or do you think it's yeast?  Yikes.  I really don't want to deal with candida right now.
Could this just be an intestinal virus?  (Hmmm....Not likely....I think I can tell the difference.)
Or worse yet......could this be c. difficile?  Ohhhhhh nooooooo!  You could get really, really sick with that.  Great!

And which is the correct answer?  I have no idea.

But I do know that I hate being my own detective.  What I really want and need is to have my local health care system taking care of me, answering my questions, and doing the detective work.

I guess all I can do is wait it out and see.  I don't think I'll even bother notifying my LLMD.  I know what he'll say anyway - stop all meds until it clears up.  So, that's what I'm going to do for now.

I'll let you know how it goes.

lymeSAVERS

I'd like to introduce you to Kevin Sherriff, a Canadian teacher who is battling Lyme disease.  He lives in Whitby, Ontario.  He has written about his struggle with Lyme on his fantastic blog, The Lyme Chronicles.  I feel a bit of a connection to Kevin because I, too, am a teacher in Ontario, and I was diagnosed with Lyme disease by the same Lyme doctor that Kevin goes to.  I know, understand, and have lived his struggles.  Small world. 

Now that Kevin's health has improved somewhat, he has decided to give back to others by creating a non-profit charitable foundation called lymeSAVERS whose mission it is to alleviate the financial burden of Lyme disease for Canadians needing treatment.  Individuals would be helped by means of a bursary, which would allow them to seek treatment that is not offered in Canada.

If you are considering which organizations you might like to support by way of a financial donation, I thought I'd let you know about lymeSAVERS.

The first fundraising event organized by lymeSAVERS is a 5k Run/Walk/Stroll in Whitby on May 11, 2013.  Read the details here.  The evening before the walk, lymeSAVERS will host Dr. Ernie Murakami for an information session on Lyme disease.  Click here for time and location.

Dr. Murakami is a very knowledgeable Lyme-literate medical doctor who has helped many Canadians.  I had the pleasure of attending a seminar by Dr. Murakami last year.  Check out his website, Dr. E. Murakami Centre for Lyme. 

Thanks, Kevin, for doing such a great job helping other Lyme sufferers!  This is precisely the kind of thing that we need to do to bring some sort of meaning and positive outcome out of our suffering. 

I hope and pray that this horrendous Lyme situation in Canada will change one day, that the medical system will be properly informed and trained, that diagnosis will be quick, and treatment paid for by our public health insurance plan.

Until then, we need to continue to lobby, educate, and help.  That is my intention in creating this blog, and Kevin's intention in creating lymeSAVERS.

How is remission achieved?

I had an appointment with my LLMD two days ago and we made a little family trip out of it.  It's a 3 hour drive from our house in Canada to my doctor's office in the U.S., provided there is no delay at the border.  We left ample time to stop for lunch on the way at my favourite restaurant, Pizzeria Uno.  (Good bye carb-free diet.  The wild mushroom and cheddar pizza is hard to resist.)  After the appointment, we checked into our home away from home, The Hampton Inn and Suites, and had a disappointing evening and terrible sleep!  Neither was the fault of the hotel.  I had been looking forward to curling up and watching the World Figure Skating Championships but it could NOT be found on American TV!!!  Honestly!  There was basketball and hockey, but NO figure skating.  I was totally baffled by this.  Is figure skating not as popular in the U.S. as Canada?  As for the sleep, well...suffice it to say that hubby and I are not accustomed to squeezing into a queen sized bed!  And our kids are not accustomed to sharing a bed either.  Little sleep was had by all.  Outlet shopping cheered me up a bit the following day.  (Note to self:  Next time, leave hubby and the boys somewhere while you shop in peace.)

Onto more important things......the doctor's appointment. 

So here I am in mid-March feeling pretty good on my Zithromax, Banderol and Samento.  So far so good.  The symptoms that crept back in early January have abated.  I'm tapering off the sleep medication (again), and looking forward to some good months in the spring.

Which begs the question:  How do I get into remission and STAY in remission?

When Lyme disease strikes and you're really, really ill, all you can think about is how to feel better.  Hopefully, that is eventually achieved.  But when you're there, at the end of your treatment, the next step is to figure out how to remain in remission.  Some people get there, others do not.  It's quite a mystery for even the LLMDs.

Doctors say that if you had Lyme disease for more than 1 year prior to starting treatment, it is highly unlikely that the infection will ever be completely eradicated from your body.  Remission is the most you can hope for. 

My LLMD said that I was a borderline case, so it's hard to say.  I had symptoms for 5 months prior to treatment, but the bacteria was in my system for much longer than that.  How do I know?  Well, the symptoms came on in January of 2011 - not exactly tick biting season.  I had been hiking through brush at a provincial park the previous summer, and had been devoured by black flies several summers earlier up at a cottage.  The bacteria was clearly dormant in my body for a time before producing the symptoms in January.

So, can I ever eradicate the bacteria?  I don't know.  Neither does my LLMD.

The fact that I relapsed in January of 2013, after 18 months on antibiotics followed by 7 weeks off them, leads me to believe that the bacteria was not fully treated.

Dr. Marty Ross of Treat Lyme and Associated Diseases, whom I contacted to ask a question about relapse, said that I should deal with biofilms for the next 4 months, so that is the plan.  I'll continue the Zithromax, Banderol and Samento until the end of June, and then decide if I want to try going off everything cold turkey or if I want to take a preventative dose of Banderol and Samento every day.  I guess we'll see.   

My own LLMD (not Dr. Ross) said that he has patients who have been on antibiotics for 20 years!  He said that I may need to pulse the antibiotics periodically if symptoms come on.....perhaps for a couple of months at a time.  I asked him about the so-called "super bugs", which can be a concern for those on antibiotics, and he said that he's never seen that in his practice.

So, the future is unclear.  I hate that.  I'm a planner, and I just don't like not knowing how my health is going to hold up as I move into the future.

A fellow Canadian Lyme sufferer, Christa Vanderham (whose incredible story you can view here), posted this yesterday:

"Don't fret.
For this leads to wrong-doing...
Rather, wait on the Lord instead."
-Psalm 37

Thanks for the reminder, Christa.  I needed that.

Low carb high fat. What?????

Sometimes I really have a love-hate relationship with food.  I love my sweets and carbs, but hate how they make me look and feel.  It's the food paradox.  We need food to fuel our bodies and keep us alive, but the very thing that sustains us can cause illness, obesity, and even death.  What it boils down to is knowing which foods bring health, and which foods cause illness.

This seems so simple, doesn't it?  Well of course we know which foods are BAD for us!  But do we really know the whole story?  Sure, the Mars Bar is bad. The Starbucks Java Chip Frappuccino (my favourite) is bad.  No argument there.  But did you ever consider that all of the whole grain breads, rice, and pasta that you consume could be a major culprit in your health woes and weight problems?

I've been researching a new approach to food:  low carb, high fat!  It sounds so wrong, doesn't it?  But the research and clinical evidence is in.......people lose weight and become healthier when they limit or better yet completely eliminate carbohydrates (in the form of grains), and increase good fats in their diet, e.g., olive oil, coconut oil, and yes....butter!

I know......it's the opposite of what we have been taught by all of the "experts".  I wonder, though, how these experts would explain the obesity epidemic in North America.  We're watching our fat intake and eating our 12 servings of grains a day recommended by the Canada Food Guide.  So what is causing these health problems?

If you want to explore this topic, I urge you to check out The Diet Doctor.  This is an excellent website created by Dr. Andreas Eenfeldt of Sweden.  The videos on his website are well worth exploring.  Watch his lecture called The Food Revolution (below).  It's a 1 hour lecture on the low carb high fat diet - how it works and why it works, not just for weight loss, but for optimal health for everyone.

 

 

The most difficult part of eating this way is knowing how to replace the grains and sugars in your diet.  Well, I suppose the sugars don't really need replacing.  But something has to take the place of the grains.  Dr. Eenfeldt explains the diet in detail here.  (And by "diet", I don't mean a weight loss plan per se.  I mean a way of eating for optimal health.  The weight loss is just an added bonus!)  This concept isn't new to me.  There is a similar program in North America called Maximized Living which I am acquainted with.  But before now, I really wasn't ready to radically shift my eating habits.  I still don't know if I'm 100% ready, mentally, but I know I need to do something to reverse the weight gain I've experienced since starting my treatment for Lyme disease.

 

If nothing changes, then nothing changes.  So I'm going to give this a shot.  In recent weeks, I've been collecting grain-free recipes to use.  Thank goodness for Pinterest!

 

If you are recovering from Lyme disease, you may want to consider a diet such as this.  The elimination of carbohydrates and sugar helps with inflammation in the body, and improves immune function.

 

I realize it may be hard to think about changing the way you eat if you are struggling to overcome your illness.  I was there, too.  Two years ago, I had neither the strength nor the ability to make such a change in my life.  But perhaps consider just a few small changes or shifts that might be manageable - give up the sugar, cut back on your grains, increase your good fats (olive oil, coconut oil, and butter), and eat plenty of protein and vegetables.

 

I already know I'm going to have some challenges!  As I write this, I'm hungry!  Clearly, I've not eaten enough fat and protein today, because one shouldn't be hungry on this plan.  And perhaps the steamed rice that came with my stir-fry at the food court wasn't the best option.  (But honestly, it was the "least bad" food I could find in the food court!) 

 

So tomorrow is a new day.  Baby steps.