It's June! Who hooooooo!

Nothing makes me happier than June.  Well, July and August are pretty good too, but there's just something about June that allows me to finally exhale and begin the process of relaxation.  OK, so I can't really relax for another couple of weeks, after my report cards are submitted, but there is this out-of-the-ordinary calmness in me knowing that my job is winding down for the year.

Here is a picture of what was on the agenda today.

It's planting season, and these beauties will soon be making their way into pots to adorn our abode. I'm also looking forward to planting and using more herbs this year - chives, dill, parsley, basil, rosemary, thyme, and mint.

It was a rough winter, not only in terms of the horrible bitter cold we endured, but also with my health. I'm therefore quite glad to bid it farewell.  I dealt with a Lyme relapse in January, got back on antibiotics in March, and have been trying to get some symptoms under control.  I'm so happy to report that I think I've finally turned the corner!  I actually feel half-decent!  I'm certainly not 100%, but I don't know if I'll ever achieve that again.  Today I feel about 80-90%.  It might be different tomorrow.  Each morning is like a box of chocolates that way.....to quote Forrest Gump.  "You never know what you're gonna get."

For a few weeks I've been battling terrible tiredness.  I wouldn't call it fatigue, just tiredness.  I suspect that it is medication induced.  I'm currently taking minocycline and the pharmacist said it can be sedating.  Perhaps in a few months I'll be able to reduce the dosage and I'll perk up a bit.

Of course I still have so many questions:  How long should I stay on the antibiotics?  Will I ever get off them?  Will I always relapse?  Will I ever lose this weight I've gained since my illness started?  Will I ever feel "not tired"?  Will I be able to handle my job next year?  Will this crazy Lyme situation ever get sorted out in the Canadian medical system?

There are too many unanswerable questions, so the only alternative to driving oneself crazy is to wake up in the morning and appreciate each day for what it is.  Live one day at a time.  Practice gratitude. Thank God for the blessings in your life and even the hard times, for it is in those hard times that He teaches us so much and develops our character.

I hope, despite how you feel, that you can find one (or 10!) things to be thankful for today.  I wish you all a beautiful summer.

Blessed Be Your Name

by

Robin Mark

It's my blog and I'll cry if I want to!

I feel the need to vent, and so I think I will. 

This has been such a week of emotions!  Fear, discouragement, frustration, worry. 

I don't mean to cause additional stress to anyone out there who is suffering from Lyme disease.  Honestly, my main purpose in creating this blog was to provide information and ENCOURAGEMENT to those who stumble upon it.  I hope I have helped many of you to find the help you needed, and to have hope that your situation will improve.

Nevertheless, this has been a very difficult week for me.  I find my self smack dab in the middle of a Lyme relapse.  Sigh!  For at least a year and a half, I had been functioning at about 85-95% of my normal self, and that was great!  It was so amazing to think that I had beat this illness, or at least pummelled it into submission/remission.

Until......

I went off the antibiotics in early January.  I felt fine for the first month of drug-free living, but then that insidious symptom returned one night, out of the blue.  The brain vibration and electrical body sensation when I'm about to drift off to sleep. 

Honestly.......WHAT IS WITH THAT??????????????  Why can't a neurologist tell me what that is?  Why doesn't an MRI show something?  Why did my sleep study report a normal sleep pattern?

Lyme is like that.  We look so normal on the outside, and the tests we have done report that we're normal on the inside.  Meanwhile, the borrelia is drilling deep into our tissues and brains and wreaking havoc on all of our organ systems.

Several symptoms have returned:
the head vibrations / electrical sensations
a vibrating feeling in my body
head pressure
digestion problems
a profound fatigue
And a lovely new symptom that occurred for the first time yesterday - vertigo!  It only happened for 2 minutes while I was teaching a class, but I felt like I couldn't get my balance....like I was walking sideways!  Maybe it wasn't Lyme-related at all; I had just hopped down from a table I had been sitting on.  Perhaps something jarred in my inner ear, who knows. 

The fatigue has made it quite hard to get through my days in the past two weeks, and the tears are flowing pretty easily.  I'm thankful that I've been able to speak to my Lyme doctor over the phone and get back on antibiotics.  I suppose I should also be thankful that I am able to get sleep with the help of sleep medication.  I sure have a love-hate relationship with Big Pharma.

I know that for the next few months, I'll need to really focus on helping my body to heal by eating a very clean diet devoid of sugars and starches.....as hard as that is for me.  I need to avoid stress and get adequate sleep.  I need to rest when my body tells me so.  I need to exercise.  I need to pray and spend time with Jesus, who promises to be my help in times of trouble.

And I need to wait.....and wait.....and wait.....until things settle down in my body again.  I know it will happen because it has before.

I hope you will not be discouraged by what you have read; that was not my intention.  I just wanted to be honest with you about my Lyme journey.

Many blessings to you all.  I hope that in a few months, I'll be able to report back to you with good news.

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.

Goodbye biofilms - I hope!

I'm starting on a new herbal regimen in addition to my antibiotics - Banderol and Samento.  I received them in the mail today....finally....after waiting 2 1/2 weeks for them.  I'm both happy AND nervous to embark on this treatment, which will last for 4 months. 

First off, here they are.  Ta da!  They look so lovely and innocent, don't they?  But I hear they pack quite a punch.

This herbal treatment is going to hopefully help me get rid of any Lyme germs that are preserving themselves under biofilms.  Biofilms are a slime coating that exist on some Lyme bacteria, and which antibiotics are unable to penetrate.  Lyme is stealthy.  It finds ways to hide and protect itself, only to come out of hiding at some later date and send the host (aka ME) into relapse.  Banderol and Samento break down biofilms, and are able to kill all three forms of the Borrelia bacteria - the spirochete, L form, and cyst form. 

The downside of Banderol and Samento is that people often report herxheimer reactions (also called die-off reactions).  As the bacteria die off, toxins are released too quickly for the body to dispose of, and symptoms can flare up or you can feel flu-like for a period of time.  I know what herxheimer reactions feel like.  My worst herx occurred 3 days after I started antibiotic treatment in 2011.  I felt awful for 6 days, and then it subsided.  They came regularly during my treatment for about a year, and then finally I was free of them.

Dr. Marty Ross, an LLMD who has a practice in Seattle, Washington, has provided a lot of very good information about Banderol and Samento, and has seen a lot of success with this treatment in his practice.  Check out his website, Treat Lyme and Associated Diseases, if you want to know more about this herbal regimen.

Wish me luck.  I'll let you know how it goes.

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.



 

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.

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!

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.