Overcoming Insomnia

Insomnia has to be one of the most brutal symptoms of Lyme disease, and so many of us suffer from it.  Prior to 2011, when my Lyme disease appeared, I never EVER had a problem sleeping.  But it has been a struggle for 6 long years now.

Some Lyme sufferers can't sleep, while others sleep too much!  How bizarre is that?  All I can say to that is that Lyme messes with our brain chemistry - hormones, neurotransmitters, cortisol, etc. - and creates a problematic situation that is not easily resolved.  In addition, we might end up with thyroid or mitochondrial issues that can worsen our fatigue.

I encourage you to work with your doctor, naturopath, and LLMD to do whatever it takes to get you sleeping.  Sleep is crucial to healing.  I have had some success with the use of melatonin, 5-HTP, and zopiclone, but there are many more options out there.  Gabapentin was disastrous for me and it took me a very long time to wean off of it due to severe withdrawal symptoms.  Every person is an individual and what works for one may not work for another.  Experiment with various supplements, and if necessary, prescription medication.  But I highly recommend that you do this under the guidance of an experienced medical professional who can help you with dosing and drug interactions.

Here are a few resources to help you in your quest for a decent night's sleep:

1. ProHealth, "Five Supplements I Use to Cope With Insomnia"

2. Connie Strasheim, Beyond a Glass of Milk and a Hot Bath  (Kindle edition)

3. Dr. Marty Ross, Sleep in Lyme Disease  (Dr. Marty Ross' articles require a subscription to his online Lyme book, but it is well worth the money!  He provides an enormous amount of invaluable information on his website.)

Sleep, glorious sleep!

Oh my, this fall is passing by so quickly!  Time doesn't usually do that for me; it's usually slooooow, but not this year!  Soon it will be time for winter boots and Christmas preparations.

So how have I been doing?  On the Lyme front, VERY well!  My typical Lyme symptoms are still under control, and I've been able to wean completely off sleep medication.  For that I am so, so grateful.  I've been sleeping wonderfully (i.e., falling asleep easily and sleeping straight through with minimal wake-ups in the night) which is something I was deprived of when I was in the grip of the illness.  That said, I'm not sleeping LONG ENOUGH - totally my own fault for going to bed too late.

For all of the Lymies out there, here is one of the most important pieces of advice......GET ADEQUATE SLEEP!!!  It's important for your healing.  It's also important to help keep the Lyme in remission because our body repairs itself at night and adequate rest improves the immune system among other things.  Wow, I sure notice a difference in my life when I'm not sleeping enough.  I drag myself around all day, feel so lethargic after work, have no motivation or energy for exercise, and crave sugar to give me a boost.  Bad on all fronts. 

If you have Lyme and are suffering from insomnia, I urge you to speak to your LLMD about temporary solutions.  I absolutely hated the idea of being on sleep medication, but realized it was necessary.  I was so afraid of becoming addicted to it.  The sleep medication I used, zopiclone, is not "technically" addictive.  However, your body can develop a tolerance to it and require more and more.  When I decided to try getting off zopiclone, I weaned off very slowly over many months, cutting my pill in half, then in quarters.  Then, I got a lower dosage pill and cut that one into quarters.  By the time I stopped taking it, the tiny bit I had been taking really wasn't doing anything for me anyway, so it was pretty easy to just quit at that point.

On that note, let me wish you all the best in your quest for good sleep. 

 

Eat, sleep, move!

There's not a lot of new things to share right now.  Life is moving along!  Actually, I'm feeling pretty good, now that I stop and think about it.  This would likely be due to:

1) Eating better (with the goal to lose weight)
2) Getting enough sleep
3) Starting an exercise program
4) Re-starting antibiotics at the beginning of January

I sure had developed some BAD habits in the fall, and now I'm trying to break them.  I think I've FINALLY gotten it through my head that I need a multi-pronged approach to keeping this Lyme in check.  Honestly, if you think you can just stop the antibiotics when you feel well, but slip into your old habits of eating refined sugar and Cheetos, and staying up until 1:00 a.m., then you are likely to have a rude awakening......like I did.

Exercise has been good, but I'm sore!  I'm trying to pace myself, and listen to my body so that I give it ample time to recover from a workout before going to the gym again.  I aim to work out 3 times per week.  I have to keep reminding myself of ALL of the benefits of exercise, besides weight loss.  It boosts the immune system, helps with lymph drainage, gets those antibiotics pumping through the body better, improves sleep, and boosts the mood.  I'm also so amazed and grateful every time I work out, when I think back to how terribly weak I was in early 2011.  As I've stated before, when I was really ill with Lyme, washing and drying my hair was exhausting!  Now, I can do the treadmill for 30 minutes followed by 20 minutes of strength training.  Quite the miracle!

In the food department, my naturopath says that it takes 21 days to break the sugar habit.  OK, I'm on Day 4, and I've already blown it.  But I'm learning that healthy eating is not just a day to day goal, but sometimes an hour to hour goal.  If I blow it one hour, I need to get right back on that wagon and carry on.  Sugar is SO bad for Lyme disease.  It suppresses the immune system, which is the exact opposite to what you're hoping to do.  It also feeds yeast, and the last thing you need in addition to your Lyme is a systemic yeast infection.  I'm trying to use stevia and xylitol in place of sugar.  I can't say that I'm thrilled with stevia in my coffee, but I'll put up with it, or maybe learn to drink it with cream only.  I've also got some recipes for treats made with xylitol, so when I allow myself to indulge, at least I won't be feeding the yeast in my intestines.

I recently purchased the book Wheat Belly Cookbook.  If you haven't read Wheat Belly, I really encourage you to.  And if you feel like jumping on board (and frankly, I don't know how anyone wouldn't want to after reading that) then the Wheat Belly Cookbook is a fantastic companion to the original.  Dr. William Davis, a cardiologist, explains why the genetically modified wheat we grow today is so bad for our bodies, how it elevates the blood sugar, and produces fat storage from the resulting insulin spike.  And in addition to that, inflammation occurs all over the body and manifests itself in various ways, depending on the person.  All I can say is....it is a very, very convicting book!  And it will scare the living daylights out of you if you LOVE your pastas and breads!

I have decided to greatly reduce my grain consumption, and to try to eliminate wheat, although I don't think I'm going to go to the extent of reading every label on every canned good I buy.  If it is an obvious source of wheat, then I'll eliminate it, e.g., bread, crackers, pasta.  The key is to find suitable and tasty substitutes for those things.  Instead of wheat crackers, I've bought brown rice crackers or Mary's Crackers (which Costco sells big boxes of).  Instead of wheat pasta, I found pasta at Costco made from amaranth + quinoa + brown rice.  As my "starch" at diner, I'll eat 1/2 cup of brown rice or barley or quinoa, and sometimes a 1/2 potato, though sweet potato would be better.  The bread is the hard part!  I will occasionally allow myself some sprouted grain bread such as Ezekiel or Silver Hills, though Dr. Davis would say that this is like putting "lipstick on a pig"!  They're still wheat.

I have no idea how a cardiologist has the time to come up with so many lovely looking recipes!  But honestly, if you really do want to embark on a wheat-free diet, or if you need to be gluten-free, Dr. Davis has many recipes for making "bread-like" creations that should satisfy you.  They involve the use of almond flour for the most part:  muffins, biscuits, pizza dough, etc.  I haven't tried any of them yet.  For one thing, I would only be able to eat them at home, as my workplace is "nut free" due to allergies. 

I'd still be interested in knowing what Dr. Davis would think of the spelt flour that I wrote about recently.  It's not made from the same type of wheat we regularly consume, so perhaps it would not have the same effect on the blood sugar.(?)

I'll leave you with an amazing fact from Dr. Davis' book:  Two slices of whole wheat bread have a higher glycemic index than a Snickers Bar!  No....that doesn't mean we should run out and grab a Snickers bar guilt-free, but perhaps we need to re-think our morning toast.

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.

My quest for health

The approaching "end of treatment" date is sobering.  For the past few months, I've viewed the antibiotics as my safety net.  Sure, for the first year and a bit, those drugs were sustaining me, and then healing me.  But since I've been feeling well, they haven't had a significant purpose other than to insure that the bacteria have been beaten down sufficiently.  Soon, this safety net will be removed. 

ILADS doctors like to treat 2 months beyond the end of symptoms, and I'm currently weaning off the antibiotics.  I've gone from 2 doses of Zithromax daily, to one dose daily.  I'm having a phone consult with my LLMD next week, and we'll see what he'll do next.

Soon, my body will be on its own, needing to keep any remaining Borrelia burgdorferi at bay using only its beautifully designed immune system.  That means I need to support my immune system in the best way I can.  Sadly, I haven't been doing so well in that department, but it must begin to take on a greater importance in my life.

To that end, I joined a fitness club, something I haven't done in about 15 years!  I've certainly exercised in the past 15 years, especially when trying to lose my post-pregnancy weight, but it's been a very long time since I've had a club membership.  I decided it was time because I was having difficulty getting motivated to exercise.  Despite the fact that I have a treadmill at home, dozens of workout DVDs, and weights, I constantly found excuses to avoid exercise.  And exercise is what I need right now, not only to lose the 30 lbs I gained while I was sick, but to support my immune system.

So far, I've been doing the treadmill and the weight machines at the club.  I think I need to build up my strength a bit before venturing into a group aerobics class.  I'm dying to try Zumba, but I'd likely drop dead from exhaustion!  Perhaps I can ease into that class, doing a half class at first and working my way up.  If anyone has tried Zumba, I'd love to hear your thoughts.

I've also discovered the sauna!  I have a new appreciation for the Finnish and their natural approach to health.  I've been sitting in the sauna at the club for 15 min., just feeling all those toxins rising to the surface.  It's been great.

In addition to regular exercise, I've made a pledge to myself to work on other areas I've been neglecting:  eating well and sleeping an adequate amount each night.  I've definitely improved in the eating department.  I hauled out my old Weight Watchers information, and I've been watching my calories more closely.  I lost 2.5 lbs last week.  Who hoo!  As for the sleep, that is the hardest area for me.  I'm such a night hawk and thoroughly enjoy the quiet house at those late hours, so I've been cheating myself of a good night's sleep and dragging myself through the day.  That's certainly not good for the immune system.  I'm really going to work on that goal now.

For those of you reading this who might be very ill from Lyme disease, or who might be in the middle of treatment, know that it IS possible to feel well again, and to be able to make goals like this in the future.  When I was sick, these types of things were the farthest from my mind.  I was in survival mode.  And that's OK.  You can only do what your body will allow you to do.  But do have faith that your treatment will make you well again.  It really can happen.  It happened to me.

You are in my prayers.