Monday, February 27, 2012

A rude awakening

I wasn’t sleeping well.  I woke up a few times in the night, but when I woke up with my hands raised up close to my neck and my neck taking over and thrashing my head back and forth, I was less than calm.    

Up until then, the only twitches I had were slight neck twitches – little ticks, really, just quick little ones brought on seemingly by stress.  And only a few a week.  But this was something right from Under Our Skin – the scenes where Mandy has some rather visually disturbing, intense neurological twitching. 

I have to say that it is the weirdest feeling to have your body move when you don’t want it to.  Kind of akin to a leg cramp when you’re swimming (less painful, but more movement - but that same kind of involuntary reaction), it’s that same feeling where you can’t help but watch as your body just moves on its own and sort of ‘takes over.’  Back and forth, back and forth, back and forth my head went, moving involuntarily and violently, without my consent.

Somehow, by some miracle, I fell right asleep again right after it stopped – luckily after only about 5 seconds.  When I awoke again, it was morning and I woke with a start, immediately remembering the involuntary thrashing that woke me in the night.  And I was pretty freaked out.  In fact, when I called my LLND to let her know, I was adamant that I was fa-reaked out.  Anxious thoughts started racing – am I going to have a seizure?  Am I going to have meningitis?  My lower back hurts, yea, what if I have meningitis?

It was a very trying time.  I just laid there and stared at my night stand while my mind just went on thinking and thinking.  But then I started to try hard to put more effort into reassuring thoughts.  I let my doctor know, if she’s concerned, she’ll call and tell me what to do.  I have been more stressed out lately, so that’s probably a big factor, yea, that was probably it.  And then I realized, I’m thinking up a storm.  Wait a minute – just breathe.  Don’t think.  Just lay here.  And b r e a t h e.  That helped quite a bit after just a few breaths.

I heard back from the doctor’s office and was able to get an appointment without much of a wait.  My doctor assured me that I was OK and it was caused by one of my coinfections (I can’t remember which one – either Bartonella or Babesia).  And we also discovered that I for sure have chronic Epstein Barr Virus, too – something about my tongue and throat indicated I’ve for sure got it.  I’m just a little package of diseases, aren’t I?  Ha ha ha.  We did a Meyer’s cocktail (a multivitamin injection!) and that was pretty cool.  I could taste it, smell it, and got a little flushed.  It was GREAT!  Also added some Cat’s Claw tincture to my arsenal as the anti-viral for the Epstein Barr. 

All in all, everything is great.  It was a wonderful lesson in keeping calm.  After all – the skill of keeping yourself calm must be used, like any other skill.  Use it or lose it!

It definitely was an eye-opener and a blatant reminder that something's temporarily got a hold of my body (as if I could forget).   

I am also profoundly lucky that I don’t encounter this neurological twitching stuff very often.  Many Lymies have seizures – many times a day.  I just can’t help but be completely amazed at just. How. Lucky. I. Am.  

Saturday, February 25, 2012

Shortcuts, glorious shortcuts

In my last post, I talk all about your body’s need for nutrients – and how most food is actually food products, completely devoid of nutrients.  It’s so silly – why are we stuffing our faces with useless fuel?  I can’t imagine stuffing our cars with gas-less liquid and then expecting them to run well.  *Sigh* Ay yay yay.  (If you want to check out that last post to see what I'm talking about, here it is:

I talked about eating a more alkaline diet to help with pain when you have Lyme Disease and how veggies and fish is just the ticket.  But, and I know firsthand, that cooking isn’t always easy when you’re sick.  Even going grocery-shopping is a huge drain, and sometimes the only thing you can do that day.  So cooking on top of everything else you’re doing or trying to do can be very difficult, especially when it’s a whole new way of doing it.  But at the same time, you’ve got to prepare something to eat, so as much as you can, prepare something good, that will actually reduce pain.  My doctor actually wrote on my wellness plan, that on my good days, I need to plan for ‘Veggie Success’ – use that good day to plan ahead what good greens I can eat on my bad days.  (Then I laughed and said that ‘Veggie Success’ sounds like it should be a band name).

On days when it is impossible to cook and eat good veggies, there are two great shortcuts I know of to get the nutrients your body needs to heal (and do all the other stuff it does).

1)   Juice.  Juicing can be a laborious process, but remember that you only have to do it once every few days, not multiple times per day like with cooking.  (*Juice is at its optimal nutrient level if you drink it right away, and that’s something to do later, but for now, since you’re sick, juicing a lot at once and saving it for a few days is A-ok).  This might be a better option to execute on a good day, but still, remember you only have to do it every few days, then you’ll have it available to drink on your bad days.  (What a perfect way to plan ahead for Veggie Success!)  This is a great shortcut way to get all those nutrients out of the veggies without having to cook and eat them.  And when you juice, you juice A LOT of stuff, more than you could eat.  The recipe from my LLND is: something red, orange, and yellow (example: tomatoes, strawberries, bell peppers, oranges, carrots, golden delicious apples) + something green (example: kale, swiss chard, celery, broccoli, spinach, red lettuce, parsley).  I picked up an older model Jack LaLane juicer from craigslist (for $50!) and away I went.  Just rinse and stick in the juicer.  My husband even loves the stuff – you get to a point where the juice smells great and you crave it.  I guess the body knows where the goods are - and does what it can to get you get them and put them in you. 

2)   Greens powder supplement.  The other shortcut I know of is taking greens powders.  This is the simplest, easiest thing to do.  All you do is open the canister, scoop, and stir into your water.  The only catch is that it can be pricey.  There are about a million greens power supplements out there and many are just terrible quality.  Some good brands that you can trust are New Chapter, MegaGreens, or Barlean’s.  I found an excellent one that is organic AND gluten-free (that was the toughy – not many of the greens powders out there are gluten-free, a dietary trick very helpful for reducing pain and getting rid of Lyme).  The one I use is called GreensFirst – and the taste is pretty good, it’s got almost a spearminty taste to it.  Greens powders give you nutrients, make you more alkaline and reduce pain, and are very easy.  And I think, well worth the investment. 

So if you must, take a shortcut!  But get those nutrients.  Do whatever you can to help your body kick that Lyme out – and providing the basic building blocks of what your body needs to function is an excellent foundation.  So go out and get those nutrients, any way you can.

Thursday, February 23, 2012

Food, glorious food

The next few posts are going to be about food.  Food for Lymies and non-Lymies alike.  Let me tell you why what you eat is so, so, SO much more important than you may think. 

First, did you know that the average American eats more than 60 TONS of food in their lifetime?  That’s A LOT of food!  Think of how healthy you would be if you ate 60 tons of spinach, or how unhealthy you would be if you ate 60 tons of french fries.  Yipes!

Consider that the function of food might be more than just to keep you from being hungry.  Food is what your body needs to give you energy – and you need it 3 or more times per day!  You know this if you haven’t eaten in a while – of course you’re hungry, but you’re probably also tired and ornery.  Your body needs nutrients to pump that blood around, make use of the oxygen you breathe, and give you the mental energy to get stuff done (as well as support everything your body does to kick Lyme's butt).  

There’s a reason that those skinny, North Face gear-wearing, running, biking, healthy people we all hate are happy – they’re healthy – because they eat right!  (And running and biking helps, too)

Probably more important than what you DO eat is what you DON’T eat.  We all know it’s not healthy to eat fast food (if you don’t know this, watch Super Size Me – this will give you a little information you don’t have).  And unfortunately, because of the way our country subsidizes corn, most of the food you will find in the supermarket isn’t food at all, but instead food products, completely devoid of the nutrition that your body is supposed to be getting from food.  This cheap corn is in everything.  Truly, check the ingredients of any of the food that’s in your cupboard – you will find corn starch, high fructose corn syrup, corn oil, hydrolyzed corn protein, or maltodextrin in nearly everything.  Not nearly as healthy as a head of broccoli.  For more on this whole thing, watch King Corn, available on Netflix.  Michael Pollan’s In Defense of Food is another great resource, it’s a book and I think also a movie.

The bottom line is - what you shove into your face matters.  You can feed yourself food products that don't really have the nutrients your body needs (so of course your body won't function very well - it's not getting the fuel it needs), OR you can feed yourself real food - full of nutrients your body needs (so your body has what it needs to work really well).  

Eat nutrient-dense foods like organic (wow – there’s a whole other post topic right there) veggies and fruits and good proteins like fish.  Another way to get these nutrients the shortcut, kinda cheating way, is to juice or take a greens powder supplement.  More on that to come.
To read more, see my post on these glorious shortcuts here:

Now, to a great way to relieve pain for Lymies: eating an alkaline diet.  In my experience, food has been the #1 pain reliever for Lyme.  Truly!  The point of an alkaline diet is to reduce acidity in the body, which will also reduce pain.  Pain is a type of inflammation and it’s much easier for your body (particularly joints and stomach) to be inflamed when your body’s environment is full of acid.  So, to reduce the acidity in your body’s environment, eating the right foods is key.

My LLND told me to eat basically just veggies and fish.  She also explained which alkaline foods are better to eat than others in a great way – by looking at the whole picture.  She drew me a little chart, and here it is:

Alkaline ----------------------------------------------------------------------------Acidic
Veggies/starchy veggies/fruits/oils        grains/nuts/legumes/meat/dairy

(So veggies will be more alkaline than starchy veggies, and starchy veggies will be more alkaline than fruits…and so on and so forth).

Many people want to figure out just which particular vegetable will be ‘the most alkaline vegetable’ and just eat that one – because, let’s face it – we Americans are so extreme, we never do just a little bit of anything consistently, if we’re going to do something, we want to ‘go hardcore.’ 
But looking at the chart above, really, any vegetable is going to be a good alkaline choice – better than say a cup of whole grain rice even.  So no nitpicking, just stick with any veggies and any fish.  I know fish is a meat and is on the acidic side, but you CANNOT skip the protein.  You just can’t, or you’ll send your blood sugar haywire and cause so many more problems.  And fish is the best protein to eat, full of good oils that our brains and joints need.  
For more on fish, read on:
I should also mention that most alkaline diets are more like 80% alkaline foods and 20% acidic, so don't fret too much if you love a more acidic food item.  Maybe just don't eat it all the time.  :0)  

After just a half a day switching to eating alkaline foods, I noticed a big change in my pain – a drastic reduction in pain, more than any other synthetic or natural pain-killer I tried.  And when I eat something that's more acidic, I can feel an increase in pain after just a couple hours.  

So give it a try – steam some broccoli and bake some fish, it’s much easier than you think.  Another tip to make your body more alkaline is to drink your water with a little bit of 100% juice in it (just enough to tint it and give it a little bit of flavor) - this makes your water alkaline!  (But watch out - don't add too much ~ it should not taste sweet ~ otherwise you'll make your water more acidic).  Happy eating!

‘Let thy food be thy medicine and thy medicine be thy food.’  ~ Hippocrates

Monday, February 20, 2012

Don't Quit

This post is about not quitting - don't quit having hope, don't quit putting up the effort to get through the day, don't quit the effort to dwell on the positive.   Notice I said don't quit the effort.  

This whole chronic illness thing is just nuts.  I mean, they should really teach a class on how to do this.  The facts of this whole sick situation are bleak, no doubt about it ~ giving up your job, your school, your social life, giving up doing things you love, to lay around and feel like crap, it's not a pretty picture.  And while being chronically ill zaps your energy and some days are worse than others, don't forget that that also means that some days are better  than others.  

The biggest challenge is learning to live a happy life when a lot of the happy things in your life have 'gone on hiatus.'  Watch funny movies, eat something delicious, dwell on good memories, and give yourself many a pat on the back.  And give the supportive people around you a good pat on the back.  Nothing satisfies as much as thankfulness or telling someone just how thankful you are for them and what they do for you.  

My dad found this poem that I just love.  Thanks, dad!!

Don't Quit

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don't you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow--
You may succeed with another blow.

Success is failure turned inside out--
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit--
It's when things seem worst that you must not quit.

- Author unknown

Friday, February 10, 2012

Water, water everywhere, so let's all have a drink

That's the saying, right?  Ha ha ha.  While most people recognize that they need to drink water (equal to half your body weight in ounces per day), this very simple concept is often received with a very blase attitude.  'Yea, yea, yea, drink water, blah, blah, blah.'  

Let me tell you why it is so much more important than you ever imagined.  First of all, even healthy (non-Lymies...even marathon runners!) people need to drink water - and probably a lot more of it.  75% of Americans are chronically dehydrated.  To read more on this, read 'Your Body's Many Cries For Water' - it's a good one, and here is a link:

In the Naturopathic Medical office where I've worked for 5 years, I have seen very healthy people (yes, marathon runners!) develop health issues linked to something as simple as chronic dehydration.  One case was a pretty healthy woman who had fibromyalgia that was uncontrolled, even with prescription drugs.  Turns out, she just needed to drink more water.  !  It sounds fantastical, I know, but it's the truth. All she needed to do was drink water more frequently throughout the day.

Biologically and chemically, it makes sense.  When I think about this, I always have flashbacks to chemistry class.  (Ugh, dreaded chemistry most despised subject in school)  There are so many chemical reactions that take place to convert fuel into energy and almost all (if not all - I'm no good at chemistry) require H2O - it's the one compound that's required to make all those chemical processes happen.  And without it, you guessed it, those chemical reactions aren't going to take place as efficiently.

Now, getting back to us Lymies.  As my ND explained to me, the borrelia bacteria wants to thrive in your body and in order to do that, it requires a more dehydrated environment.  So, one of the things it does is get into the messages your brain sends you about how thirsty you are and switches it.  It flips the switch so that you don't feel as thirsty, even though your body needs that water.  So even though you don't feel thirsty, it is vitally essential for you to drink more water.  Not only for all the normal functions of your body, it is also critical especially to flush out the dead bacteria.  Sure, supplements will help your body carry out the dead bacteria, but the real thing that's doing the flushing is the flow of water through your body.  

I know water is boring and you don't feel like drinking it, but you still gotta.  Don't rely on your thirst level to gauge how much/when to drink water.  Here are some tips I do to get more water:

Drink a big glass right away when I wake up - make it part of the routine.  Get up, pee, brush teeth, drink water.  (One glass more is one glass more!)

Add an Emergen-C packet to a glass of water 1x/day - the vitamin C, electrolytes, and minerals help your body absorb more water and stay more hydrated.

Adding a little 100% juice gives it a little flavor - this also makes your water alkaline (helping reduce inflammation and pain in the body).  I add just enough to tint the water - but not too much (it should not taste sweet), otherwise it becomes more acidic, fostering inflammation and pain in the body (this is another great tip from my ND - she really knows her stuff!).

Set a timer - truly!  I set the baking timer for an hour and when it goes off - that means it's time to get out of bed or get off the couch and go drink a glass of water!

Besides drinking water, I want to talk a little bit about hydrotherapy.  Hydrotherapy is an awesome tool in Naturopathic Medicine.  And I don't mean colon hydrotherapy here - which is what most people think.  (Although I have gotten colon therapy in my life, before I got Lyme Disease - and I lost 10 pounds in an hour!!!)

Epsom salt baths are GREAT, and a great form of hydrotherapy.  The heat is really the best thing.  Did you know that hot, hot (as HOT as you can stand) water increases your body temperature?  Yes, you did.  But did you also know that when your body temperature is increased, it decreases the activity of the borrelia bacteria AND increases activity of your natural killer cells?!  I'm not aware of any prescription drug that can do THAT.  

Did you also know that fever is actually a good thing?  Of course, there is a limit, a very high fever could be of concern and there are probably contraindications (reasons NOT to induce a fever), but generally speaking is a good thing.  When your body heats up, it is your body's natural response to fight infection.  And since Lyme Disease is a bacterial infection, increasing your internal temperature could be a great thing.  To learn more about the science of hydrotherapy, here's a link!

Find yourself an LLND who can give you the all-clear to incorporate some hydrotherapy into your healing plan.  

And here's a neat little quote I'd like to end on.  Since I like to end that way.  :0)

'The past is history, the future is a mystery, but today is a gift - that's why they call it the present.'  ~ Kung Fu Panda

 Find something, anything to be grateful for.  Today, I am going to be grateful that I am not lost at sea, surrounded by sharks right now.  I am SO glad I'm not lost at sea.  ;)

Tuesday, February 7, 2012

The Nitty Gritty (My Lyme Protocol)

From the start, I knew I wanted to do natural treatment for Lyme.  Philosophically, I just believe (and it makes sense to me) in using Natural Medicine.  The whole idea that 'nature' does the healing is, in my mind right on the money.  {Think about a broken arm that gets a cast on it.  That cast isn't doing anything magical - all it's doing is keeping your arm from moving.  What actually does the healing is your body, not the cast, or the pain pills, or anything else.  Our bodies want to be healed and healthy.  They just need some help sometimes.}  I just don't agree with the Allopathic/Western Medicine model of: wait until you need surgery or drugs, then get surgery or drugs.  

Also, historically, I've never felt better than when I started on the Natural Medicine route.  

I usually don't take prescription drugs (and try to avoid over the counter drugs as well), but the fact that my neurological symptoms came on so fast and so strong scared me quite a bit.  I was alarmed and did not want to take any chances with something so serious as Lyme.  I wholeheartedly wanted to use antibiotics.

Here is a helpful article I when it comes to considering whether or not to use antibiotics in the treatment of Lyme.

I want everyone to know that I personally believe it is very important to seek medical care (my personal preference is naturopathic medical care from a licensed naturopathic physician) for Lyme Disease, or any kind of health complaint.  So what I list below is my own individual plan for my individual body.  It's important to note that every Lyme patient is different, so every Lyme plan will be different.  I used to just research supplements that sounded good and just start taking them, without any medical advice.  I didn't get harmed too much, but just as some supplements can be really helpful, some can be really harmful (or just a waste of money since many supplement company's standards are low - bottom of the barrel low).  Please go see your doctor if you feel something is 'off.'  There is no better investment you can make than an investment in your health.

I also want to share a wonderful article about Naturopathic Approaches To Lyme, written by an LLND.  Even if you are a Lyme 'pro,' there will be something here you didn't know before: 

Here's My Lyme Protocol
Drink lots and lots and lots of water.  I can't stress how important this is.  Lyme dehydrates you and goes after your thirst - it makes you feel not thirsty, because it wants to be in a more dehydrated environment.  I know it sounds so trite, but water is the way to keep your body detoxing.  Also - remember chemistry class?  H2O is needed for all those processes that convert fuel into energy.  Adding just a little bit of 100% juice will also make your water more alkaline, which will help with pain (but don't add too much - it should not taste sweet - or your water will become more acidic), plus gives it a little tint of flavor.  For more on this, go to:

*  Eat mostly vegetables and fish.  This sounds like Michael Pollan's mantra: 'Eat Food.  Not too much.  Mostly plants.'  (For a great read on food and how nutritious or lacking in nutrition it can be, go here:  This is a great way to make your body more alkaline (which will reduce pain - and has been the #1 thing that has reduced pain for me).  The worst thing to eat is: meat, dairy, eggs, sugar, and grains (I know fish is a meat and I just said meat is the worst, but you still MUST have protein, or you'll turn into a crazy person.  And fish is what I've been told is the best protein).  I couldn't find a good enough place to link to alkalinity, but just ask me if you have questions.  For more on this, read on:  And for more on fish (and concerns about mercury in fish), read on:

*Juicing.  Juicing is the best way to get nutrients, hands down.  Plus, you get so many more since it's way easier to get all those veggies in you via juice rather than eating all of them.  I juice something red, orange, and yellow + greens.  So something like strawberries and carrots with lots of spinach, kale, broccoli, parsley and cucumbers.  Certainly organic is the best - both in terms of higher nutrition and for the environment.  Plus I'm uncomfortable eating spinach that's been sprayed with Raid routinely for the entire time it was grown.  I get help from my husband juicing a few mason jars-full every few days and drink 4 oz 2x/day.

*Greens powder.  Even more greens for even more nutrients.  I do 1 Tsp/day of a product called Greens First - it's organic and gluten-free, and tastes relatively good.

*Phytogesic balm.  I goop it on the front my neck (if you tilt your head up, you'll feel 2 valleys on either side of your adam's apple from your clavicle up to your jaw - that's where I goop it on) and my hairline on the back of my neck.  This helps with opening the venous circulation from my brain and helps with 'Lyme Brain.'  I use Wise Woman Herbals brand Phytogesic Sports Balm, applying it 1x/day at bedtime.  

*Essential oil home spray.  I have a mold problem in my house and getting it eradicated isn't really an option right now.  Since mold is a neurotoxin (and so is Lyme), I have a recipe for disaster.  For now, in addition to a couple of dehumidifiers going in the basement and a hepa filter running 24/7 in the bedroom, I make this spray.  I use a 4 oz. glass sprayer bottle and fill it with filtered water and 20 drops total of antimicrobial essential oils (like Thyme, Rosemary, Sage, or Tea Tree) and spray at least a few times a day.  If I forget, I can really tell - my nose gets runny and I sneeze like crazy.  I also try to eat as much garlic as possible, to help with the mold exposure. 

*Lumbrokinase.  This is an enzyme derived from earth worms (ewww) and it acts as a biofilm-breaker-upper.  The Lyme bacteria are very skilled at hiding in this protective force field called biofilm - and when they're hiding, they can't really be touched by antibiotics or any thing else. Jerks.  I take 1 capsule 1x/day.

*Cryptolepis.  This is an herb in the form of a tincture (an herb that has been soaked in alcohol to extract all it's helpful medicinal qualities, then the herb is removed and what's left is the healing alkaloids in alcohol).  It has a good history as an anti-malarial and is another tool I'm using to eradicate the Lyme bacteria as well as the Babesia and Bartonella coinfections I have.  This one is VERY powerful and I consider it as a 'poison' class herb and it really needs to be used with respect.   I do 2 drops 2x/day.  

*Viressence.  This is another tincture combo that is an anti-viral.  I might also have chronic Epstein Barr Virus, so that's what this is for.  2 dropperfulls 2x/day.

*Lipohealth.  This is a powder and I can't quite remember why I take it.  I think it has something to do with either breaking the biofilm or maybe binding the bacteria or something.  But I remember it's good to take.  :)  1/2 scoop 2x/day.

*Artemesinin.  This one is another anti-malarial that's targeting the Babesia infection I have.  It tastes terrible, even the capsule tastes terrible.  1 cap per day, 4 days on, 3 days off.

*Spleen glandular.  My poor spleen has been in pain recently, and needs some help.  It isn't able to keep up with processing everything.  This one is temporary until my spleen gets back on its feet, then I'll discontinue it probably.

*Bentonite Green Clay.  This is essential for binding the dead bacteria so that it can be detoxed/flushed out properly.  1 tsp in water, 1x/day.  

*Gall Bladder Tincture.  Another herbal tincture formula to help my gall bladder move and squirt out the stuff to help me digest food.  It's been sluggish and even more since the Lyme. It tastes so bitter and yucky.  But that's ok.  :)  15 drops on my tongue 2x/day in the afternoon.

*Ultra Flora DF.  This is a great probiotic and way essential.  The antibiotics kill ALL the bacteria - the bad AND the good.  So I need to replenish the good.  1 capsule 2x/day, 4 hours away from antibiotics.

*Lyme and Coinfection Nosode.  A homeopathic that helps teach my body how to deal with the bacteria.  Think of it like a vaccine - it teaches your body how to deal with the disease, except with a homeopathic you're not actually getting injected with a little bit of the disease, like you are with vaccines.  7 drops under tongue 4x/day, 10 minutes away from anything by mouth.  I'm currently on a 2 week break from this one so we can see what my 'normal' state is.

*Minocycline and Ceftin.  These are my current prescription antibiotics, but we'll switch up soon to Omnicef with 'pulses' of Cipro because I have hit a plateau.  1 of each, 2x/day.

*As needed for pain: Rhus Tox LM1 (a homeopathic preparation in liquid form), Epsom salt baths (which also help with detoxification and the heat is so nice - the heat actually increases activity of your natural killer cells and decreases activity of the Lyme bacteria - Win/Win), and Advil.

Wowie, that was quite the extensive list, and it typically changes a little bit every 3-4 weeks.  There are 2 things that help me get all this in at the correct dosage and correct time: 1) my awesome husband who keeps track and calls me or brings me what I need and 2) the Pill Reminder function on my cell phone.  It is a Lifesaver!

If you ever have questions, I'll do my best to answer them.  You can leave a comment or shoot me an email at

Friday, February 3, 2012

The Boogeyman

Let's talk a little bit about fear.  Fear of the dark.  Fear of sharks.  Fear of spiders.  Whatever you're afraid of.   Are you thinking about it?  Now imagine that it is always with you - you're always in a dark room, you are always lost at sea, you are always covered in spiders.  This is what it's like when you have an infection that isn't going away.  

When I first considered that I might have Lyme, and in the very long month I waited for the test results to come in, I was scared shitless.  I learned what I could about it, watched documentaries and really did my research.  (Because after all, 'knowledge is power,' right?)  The scariest thing for me was when I was watching 'Under Our Skin,' a very informative documentary about Lyme Disease, and it gives a little lesson on the Lyme infection itself.  It talks about the borrelia burgdorferi spirochete (a mouthfull which basically is the name of the bacteria itself indicating that it has a spiral shape, like a corkscrew) and how it gets into your body usually via a tick bite and how it gets into your blood, into your heart, and into your brain.  !  It gets in your brain?!  That was the 'holy crap' that really stuck with me - how do you wrap the idea around your head that you have an infection in your brain?  I mean, that really sounds like a science fiction movie or something, doesn't it?  Or it sounds made-up. 'I'm sorry mam, but you seem to have a brain infection.'  It's just not a common thing that's talked about.  

I really was forlorn for a long while and cried and cried when I my doctor told me the test was positive.  I was so scared at the possibility of having Lyme Disease and now I knew I had it.  And it was in my brain, evident by all the neurological problems that escalated quickly - the strange smells, the hearing problems, the bumping into stuff because my depth perception was off.  Remember in my story when I got the cat scan and when I was in there had the really strong smell?  That's because I had a bacterial infection in my brain.  And I still have it.

I operated out of fear at first, scrambling to take as many drugs as I needed to, eating all the right stuff, taking all the right supplements - because, come on, things were serious here, we're talking neurological stuff.  And that whole antibiotic thing was really ironic since I am normally of the mind that prescription drugs should be used as a very last resort since they are so powerful and I don't 100% trust drug companies in general to be testing things appropriately, or to have my health as their main interest, instead of the bottom line.  In fact, I think the antibiotics I'm taking now are the 2nd time I've used prescription drugs for anything in my entire adult life, after a short course of an anti-parasitic drug when I got crypto and h. pylori.  (That sounds like the name of some strange foreign kid's show, doesn't it?  The Tales of Crypto and H. Pylori) Ha ha ha!

So.  How do you deal with a fear that you can't escape?  You can't turn the lights on, you can't just stay out of the ocean, and you can't get away.  My infected brain, blood, and organs are with me all the time.  Well, the biggest way to overcome my proverbial Boogeyman was to take as much action as I could.  This meant: investing as many resources as possible into finding doctors, treatments, and making all the changes I could to save my life.  So many Lymies really struggle with this.  I mean, imagine: you can't work anymore, just when you need to spend a whole lot of money on getting better; and you need to make lots of changes like diet and keeping all your pills and supplements in order just when you don't have the energy or brain-power to do so!  It really is some kind of weird punchline.  But, this is when you really need to dig deep.  This is a serious fight and fights are never easy.  That's why they're called fights.  For me, taking all this action and being empowered to take charge of my life and my health feeds me a lot.  There is no one to blame, there isn't a way to run away and hide under some coats and hope that everything turns out fine.  My health isn't anybody else's responsibility but my own. This is my body.  This is my life.  This is my responsibility to do the very best I can - and it means staring that stupid Boogeyman right in the face and saying 'I will win.  Not you.  Because I am bigger and stronger.  You're just a bunch of stupid bugs. And I am bigger and stronger than bugs.'

Having Lyme can be devastating and heart-wrenching and scary, to be sure.  But you also have to take heart.  No problem is unsolvable.  No challenge is too great.  People can be so much stronger and more courageous than you ever would have imagined.  You included.  

Wednesday, February 1, 2012

Choices, choices, choices

One of the biggest lessons that's been right in my face with this whole Lyme thing is that you have the power to choose how to respond - to whatever it is that happens to you.  That sounds so simple, but it really isn't!  You can look at the facts of the situation: lots of pain, feeling yucky all the time, dropped out of school, leave of absence from work...sounds awfully depressing, doesn't it?  And it is, but instead of letting go and sulking about it, I finally realized that I had the ability to catch myself and stop. The key really is looking on the bright side.  When I felt myself starting to think more about how it stinks, I have to make the effort to say to myself, 'Yea, ok, it stinks - but at least _____.'  And holy smokes, does that help!  And, of course sometimes it's harder to do than you would think.

Wow, there is so much to be grateful about.  First, I feel like my history with seeking Naturopathic Medicine really saved my life, I really do.  It taught me to pay attention to my body, which I hadn't really done before.  I developed this skill of being aware of what's going on in my body which allowed me to 'catch' things before they became a big problem.  It's a lot like when you feel a cold coming on - catching it early and then taking action like taking vitamin C and taking it easy will make your cold much shorter - or maybe you'll even avoid it altogether.  I think that, had I not learned to 'listen' to my body, I would not have gone to the doctor when my joint pain happened. 

 I first sought care in I think 2005 when my sweet husband-to-be helped me realize that my fatigue was so bad that it was interfering with my life.  I used to sleep a bare minimum of 10  hours per night, usually 12-14, sometimes 16 hours per night; drag myself out of bed and have enough energy to go to work, then come home and go to bed.  I got sick really easily and frequently (1-2 times per month).  I had always been tired, but I didn't realize just how much I wasn't able to do until Matthew somehow showed me.  It turned out that food was the culprit.  Food.  What?! My test for food sensitivities came back pretty positive for lots of food like: dairy, gluten, eggs, turkey, peanuts, cane sugar, and more.  I had 'Leaky Gut Syndrome' (no, not Leaky Butt Syndrome) and this was a big surprise because I never had any stomach/digestive issues.  Turns out there were tiny little holes in my intestines so undigested food was getting into my bloodstream and my body thought it was a virus and attacked; so my immune system was so overworked.  My poor immune system.  :)  Two weeks of avoiding my reactive foods and it was an astonishing difference - I slept the normal 8 hours per night and had energy to do things.  Imagine getting 5 more hours added to every day - and the energy to use that time!  It was a miracle and I was totally sold on Natural Medicine. 

I am also so incredibly lucky that my Lyme Disease was discovered very quickly - after 1-2 months.  On average, Lymies see 10 doctors and spend $5,000 out of pocket before they are diagnosed with Lyme.  And it just sounds crazy, doesn't it?  You would think that doctors would know how to take care of your health in every possible scenario, but because Lyme is such a smart bug, it is very difficult to diagnose - it's often called 'The Great Imitator' since its symptoms are so diverse and change frequently.  That's a big reason that Lymies look 'crazy' - you know, they start off wincing because of terrible headaches, then have to quick cover their ears because the hypersensitivity to sound kicks in, then can't stand for very long.  But THEN, they won't have problems with those same things the next day.  Most Lyme Disease patients aren't treated with complete respect from their doctors and a big reason at the heart of that is the different opinions that doctors have about Lyme Disease.  One camp has a tagline that Lyme is 'hard to get and easy to treat' with a short course of antibiotics.  Since, in reality, that short course doesn't work in many cases (remember my mantra, Lyme is one smart bug), there is another camp that acknowledges that Lyme is complex.  And since it's a bacterial infection that gets into your blood and all your organs - your brain, your heart, your lungs, and in my own personal experience - with 10 weeks of antibiotics and still feeling sick (and not from the antibiotics because I'm being supported from all the 'collateral damage' antibiotics can cause), I know to which camp I belong.   I am so lucky to have an amazingly supportive medical team that has been on my side from day one.

The timing has been really fortunate, too.  I can't imagine being this sick and having kids to take care of.  Thanks God we waited to have kids.  And with lots of other things going on in my life, I am so grateful I got Lyme Disease in the fall, instead of over the summer when our family dealt with some very significant losses. 

These are the things I have to make a conscious effort to remind myself about whenever I get down in the dumps.  And I know everyone has something they can be grateful for when they get down in the dumps.  And it's hard not to indulge feeling depressed, and it's a fine balance of acknowledging your feelings and not letting them overwhelm you - you bet.  It is so much easier just to complain and dwell on how sucky things are, and it's okay to do that sometimes - but that should be considered a luxury, not day to day perspective. We'll see how well I do with that.  Ha ha ha

So that's what I think.

Soon enough, I'll post my treatment plan and how it's going.  But for now, I'll tell you one of the things that has helped me the most: FOOD!  I still have to avoid a lot of my food sensitivities, but eating a more alkaline diet has really cut down on my pain level tremendously.  This means eating mostly vegetables and fish.  And little to no dairy, eggs, or meat.  Grains and oils aren't great either.  Doing this creates an environment in my body that is more anti-inflammatory, thus, reduces pain.  

I liked ending on a quote last time.  So here's another one.   :0)

"Be thankful for what you have. Be it small or big, beautiful or ugly, bad or good, came in or still to come. Say "thank you" to the Lord in advance when asking for a favor. He will answer you in three ways: yes, no, and wait...and sometimes, your prayer will be granted right away." — Remy Danglacruz