Another year down!

Wow, I let the summer go by without "celebrating" my Lyme anniversary.  How could I forget about that?  I started treatment on June 1, 2011.  It is now September 6, 2014.  According to my Lyme ticker on the left, I have been in treatment for 3 years, 3 months, and 5 days. 

I'm not really in active treatment right now.  Based on my symptoms, I really do feel that I'm in remission.  However, I do still take 100 mg of minocycline daily for "insurance".  I don't want to relapse AGAIN!  Even in remission, I've never felt 100%.  I hover around 85-90% most of the time in recent months.  But I'll take it!!!  I still get tired (could be from the minocycline), and I am stiff, sore, and achy (could be from some other meds I'm on), but once I get moving I'm OK.

So it was back to school for me a week ago, not as a student but as a teacher.  I've felt good enough to increase my workload a bit this year, so hopefully I won't have any regrets about that as the year progresses.  I do have to be more vigilant about doing everything I can to maintain my health:  eat well, sleep enough, and get exercise. 

Sadly, here is my report card for these this summer:

	Grade	Comment
Eating well	C	Just too much summer indulging, eating out while on vacation, ice cream treats for the kids (and therefore me), visits to Starbucks, and the list goes on!
Sleeping enough	A	Well what can I say, it was my summer holidays.  Bonus marks here!
Exercise	D	Did I mention that I hate exercise?

I think I've fallen into these bad habits because I'm quite thrilled to be a NORMAL person these days, and not a SICK person, you know?  But I do realize that moderation is the key, and I can still have my cake and eat it too if I plan more wisely and don't overindulge, as well as take the time to bake "legal" treats for myself that are low in sugar and carbs.  It can be done!

If you're trying to get well from Lyme, please DO NOT follow my awful example.  Give your body a fighting chance! 

Today is a new start!  I'm planning to follow a low-carb detox diet for the next 10 days to get myself prepped for losing weight in the coming months, and I'm planning to do some form of exercise every other day.  Perhaps I'll give you my next report card on January 1!

Here are some snapshots of things we enjoyed this summer.

Visited beautiful Niagara Falls

 

Spent an afternoon in picturesque Niagara-on-the-Lake

Visited our Parliament Buildings in Ottawa

 

 

Got lost in Gatineau Park looking for Prime Minister W. L. Mackenzie King's summer cottage

 

Pretended to be a teacher in a one-room school house at the

Canadian Museum of History in Ottawa

 

 

 

Completely blew my diet with a bowl of poutine in Québec!

If you're reading this and don't know what poutine is, it is French fries with cheese curds smothered in gravy - a Québécois creation that can now be found on menus outside of Québec.

 

 

 

Said goodbye to a truly beautiful, historical city. 

So proud to be Canadian!

 

 

Update on my biofilm treatment

Hello to my fellow Lyme sufferers......uh, let me rephrase that......my fellow Lyme survivors!  Ya, that's much better.  (You know, the glass half-full thing, rather than half-empty.) 

I thought I'd bring you up to date on this latest phase of my treatment.  As you may remember, I relapsed in January after being off antibiotics for 7 weeks.  So here I am, back ON the antibiotics, but I've added some biofilm busters - the herbals Banderol and Samento.

I've been working my way up to the full dose of these.  It sure takes a long time when you start with 5 drops and only add 1 drop every 2 days until you finally get to 20.  I'm almost there.....today I did 19 drops of each (2 times).

So how has it been?

Well to be honest, I haven't felt this crummy in a long time!  I'm very tired on this regimen.  I seem to get a lot of headaches, and once in a while, that Lyme brain fog rolls in.  The other night, I had a hard time sleeping.  I woke up every two hours with a splitting headache.  When I tried to nap the following day, I got those brain vibrations/tremors as I was drifting off to sleep, and it kept waking me up.  Strange, I know.  But many of you will understand what I'm talking about.  So many Lyme patients talk about body vibrations.  It feels like you're sticking your finger in an electrical outlet!

So what does this all tell me?  Well, maybe I'm herxing.  Or maybe I have yeast overgrowth which is triggering cytokine production, causing symptoms similar to Lyme.  It's hard to say.  I've made an appointment with my naturopath so that I can tackle the yeast problem if that's what she thinks I have.

If I'm herxing, then that's great!  The dormant Lyme is coming out of hiding, and biofilms are being broken down, and more of the bacteria are being killed off.  And that's the whole point of being on the Banderol and Samento.  So I'm not going to complain.  I just hope that things settle down after doing a few months of this treatment.  I'm even considering staying on a preventative dose of Banderol and Samento when I'm done, just to police the remaining critters.

If there is anyone out there who may be reading this who has actually achieved remission, I'd love to hear from you!  How long have you been in remission?  What are you doing to build up your immune system?  Are you taking any special supplements?

Before I sign off, I'd like to refer you to a wonderful blog entry I read this week from the blog Infectiously Optimistic.  To find the goodness in chronic illness is such a blessing.  I thank the author for her uplifting perspective.

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.