Lyme Disease 101

I. My Story

 

I was one of those annoying kids that rarely got sick.  I had lots of ear infections as a kid, and then kind of grew out of being sick.  I remember in college never catching colds or stomach flu that circulated the apartment.  With the rare exception of bronchitis my junior year, I pretty much NEVER was out due to illness. 

            Things changed a little as I married and started having kids in my early 20s.  Being pregnant, nursing or trying to get pregnant makes you more aware of the quality of your health, or lack thereof.  For about a decade I was thus embroiled.  But about a year after I had my youngest (my mid-30s), I started to notice that a few of the seemingly minor health issues that had joined me during childbearing weren’t going away.  In fact, they were getting worse, and inviting friends along for the ride.  The chronic anemia that I assumed came from frequent gestation accelerated (despite no more gestating) and eventually caused me to have to receive iron transfusions from a hematologist annually.  Illness, big & small became much more frequent and other things like achy joints, chronic sinus pain, persistent mid-grade fevers, drenching night sweats, brain-fog, insomnia, and the dreaded gut issues came to dominate my life over the next 5 years.  Where I used to get by okay on 8.5 hours sleep, I now needed almost 10.  I couldn’t keep up with my household work, much less plans for further education and employment.  Any extra time I had was generally spent catching up on the many nagging tasks.  I found little time to keep up with friends and even less time for hobbies that required more than sitting on the couch. 

            At first, I figured that most of the issues came from premature ovarian failure due to having one of my ovaries removed over a decade ago for endometriosis.  Diminishing hormones could definitely be the cause of many of my symptoms.  I also pursued the advice of many specialists: ENT for the inner ear disease (which was eventually diagnosed as Meniere’s), gastroenterologists for the GERD & IBS, OB/Gyns for the hormonal issues (including 4 year of infertility treatments that failed), the aforementioned hematologist for the chronic anemia, and an orthopedist for a number of different joint issues.  When I asked why this was happening, I was told over and over that there wasn’t any specific reason for all my diagnoses.  Things like Meniere’s disease, IBS, joint pain, and anemia just happen to some people.  (My hematologist recently told me that it was a bit of a "head scratcher").  Also I was approaching 40, so of course some of these things come naturally with age.  I just nodded my head and thought, if things can get this uncomfortable at 40, I am REALLY dreading 80! 

            During the fallout of my many, many failed fertility treatments, I was talking to a friend about hormone replacement.  I felt like 40 was just too young to be seeing such a drastic change in my monthly cycle and worried that it would leave me prematurely vulnerable to certain female cancers.  Quality of life was also a concern as I was soaking my bed nightly with those wicked night sweats, and feeling really dragged down despite having more time to sleep with my kids all in school full-time.  She eventually found and recommended a doctor who only prescribed bio-identical hormones, and seemed open to more natural supplements and approaches than your average American doctor.  The only catch was that it was a 6-month waiting period for the first appointment!

            My appointment day finally came and I met this doctor.  He seemed nice enough and very knowledgeable.  After going through an extensive medical history, he said he wanted to draw a number of vials of blood for lab work before we would meet again in 2 weeks.  He told me that he felt like many people who have multiple systemic issues tended to have one unifying link, usually of the infectious disease variety.  I thought that sounded good, but figured it would be a matter of some kind of auto-immune disorder.  For the past year, as my health tail-spinned, I had told Derek over and over again that I think I had something serious that was hijacking my body and causing my overall health to degrade, like an auto-immune disorder.

            Two weeks later we met.  He mentioned that my hormone panel wasn’t quite as out-of-whack as I had expected.  My progesterone was slightly low, as was my testosterone and thyroid, but my FSH/LH levels were just fine.  I was also grossly anemic, but had had an iron infusion done during those two weeks.  (Oops, I forgot to mention that I see a hematologist regularly.  How does that slip one’s mind I ask?!)  He was still in search of something that would tie together all of my random symptoms, and suggested I get a few more labs drawn that day: another HNK1 panel, another CBC (complete blood count) and a Western Blot Lyme test.  The HNK1 panel that was previously done is used to suss out Epstein-Barr (aka mononucleosis, aka kissing disease, aka tonsil-hockey), AIDS, or Lyme disease.  Since some of the first tests that he also ran were negative for both mono and AIDS, one serious contender was left: Borrelia burgdorferi, otherwise known as the Lyme bacterium.  In order to better draw out the source of the supposed infection, he asked that I take a South American herb called Cat’s Claw every day for 4 weeks.  Then I would return and have my labs drawn.

            A month later I gave up some blood, and less than a week later, I got a surprise call from his office asking that I come in as soon as possible to discuss the results and possible treatment.  To my great surprise, I found that I had Lyme disease.  And I didn’t just have a couple positive bands on the Western Blot test: I had all three bands positive on the IgM portion of the test.  That is considered “CDC positive”.  See, here is where the real tension in my diagnosis starts.  I thought it was hard having failing health.  What I didn’t realize is that just getting a Lyme diagnosis within the traditional Western medical community was difficult, but treating the disease was orders of magnitude more arduous.  As I visited with my doctor, he outlined the most current treatment plan in practice by other Lyme specialists in the medical community.  I would be “pulse dosing” three different antibiotics for over a year.  Amoxicillin twice a day MWF, Ceftin twice a day MWF, and the big gun, Flagyl twice a day only on Fridays.  I would cycle like this for three weeks, and then take a week off before starting the antibiotics again.  I must admit, all I felt was shock.  And no small amount of disbelief.  Was a little tick bite really the cause of my continuing poor health?  It seemed so insignificant, perhaps even slightly less glamorous than saying I had fibromyalgia or rheumatoid arthritis.  It also didn’t seem like something that would “tie-up” all of my symptoms into one pretty package.  How little I knew then!  But I was grateful to at least have a name to put on the cause of my discomfort.

II. Lyme Disease Fundamentals

 

            I was slow to comprehend the nature of the medical battle I found myself in.  There is a growing community of medical professionals who have rejected the simplistic CDC diagnosis, treatment and expected outcome of Lyme and other tick-borne diseases.  One of the biggest ones is ILADS (International Lyme & Associated Diseases Society).  They disagree with each other on the prevalence of infection, the rate of transmission, symptoms, and diagnosis among many other issues.  One thing they do seem to agree on is that the sooner antibiotics are started after transmission, the more likely the positive outcome.  And there’s the rub: most people don’t know they were lunch for a tick, nor do they get the distinctive bulls-eye rash (it could look like a spider bite or a bruise if they even get a rash at all).  And to make matters even more complicated, the borrelia bergdorferi bacteria is one smart little bugger.  Shaped like a corkscrew (thus named a spirochete), it can morph between at least three different forms within the body, allowing it to leave the blood stream and invade all different kinds of tissues within the body.  It’s great at outsmarting the immune system and has even been videoed swimming away from white blood cells (it’s twice as fast) and ultimately escaping by burrowing into tissue.  But by far its most useful adaptation is its ability to switch between (at least) three different forms: the spirochete (the aforementioned corkscrew shape), the L-form, and the cystic form.  The last one is the genius of the three iterations because of its ability to go into a state of suspended animation that makes it safe from antibiotics, the host’s immune system, and temperature & ph changes. This complexity is one of the reasons why Lyme disease is so very difficult to cure, much less treat.

            One other super important thing to note: Lyme disease can be a multi-systemic infection.  The bacterium can and will invade any and all parts of the human body given enough time.  Different tissues have different amounts of perfusion (the circulation of blood through the vascular bed of the tissue), which means some parts of the body are fantastic places for wily bacteria to hide.  Some examples include peripheral tissues (those located near the outside of the body, like skin & mucus membranes) and joints.  

III. Prescription Treatment

 

            Because of these factors, the most up-to-date treatment for Lyme Disease is the pulsing method of oral antibiotic administration.  This consists of using up to three different antibiotics at one time (to defeat the three different cell forms of borrellia bordorferi) in pulses.  The theory is that you eradicate the active forms of the bacterium, then back off and let those in a state of suspended animation (also known as persister cells) come out to play when they sense the antibiotics have been cleansed from the system.  Then you hit them again hard with the next cycle of antibiotics.  It’s been proven effective in test-tubes and has had great success anecdotally.  There are other good reasons to go with pulse-dosing: long-term antibiotics are terribly disruptive to the friendly bacteria within the gut (and lead to social embarrassment!), and damaging to the liver.  Pulse-dosing lowers that load on the body and gives it time to rest from the toxic effects of long-term antibiotic chemotherapy. 

            Here’s one other significant reason to pulse-dose: when someone is being treated for a chronic infection, they are likely to experience a Jarisch-Herxheimer reaction (known colloquially as a “herxing”).  This occurs when dead and injured bacteria start leaking endotoxins into the bloodstream and tissues faster than the body can remove them.  The immune systems ramps up and sudden onset of symptoms like fatigue, fever, joint pain, and headache can appear or worsen if already present.  Pulse-dosing allows breaks for the body to process these toxins and regain strength before hitting the antibiotics again.

IV. Alternative Treatments

Prescription medication isn’t the only tool in my arsenal though.  I’ve added a number of supplements and practices to my daily routine to help both fight the infection as well as reinforce my body’s own healing processes.  I take NAC, S. Bourlardii yeast, Grapefruit Seed Extract, Magnesium, DHEA, and SOOOOOOO many probiotics that I’m practically peeing yogurt.  I don’t know if it’s because of these supplements or the chronic constipation I’ve dealt with my whole life, but I’ve hardly had problems with the runs at all.

            The other two really big things I do are try to get as much sleep and rest as I feel I need, and continuing to exercise.  Mostly that means near daily runs with my dog, and nightly walks with the dog again (get a dog people!  It will MAKE you exercise.).  I feel very fortunate that I have so few expectations of me.  I doubt I could even work a part-time job right now, or care for a baby or young child.   (Shout-out to my sugar-daddy who has really had to pull double-duty as financial provider and main parental unit.  XOXO)  I consider it a successful day if I slept enough, got a run in, and did one or two things on my miles-long To Do list. 

 

V. Special Consideration: Women's Issues

 

            In the not-quite 2 months that I have been following this treatment plan, I have noticed that there is another factor that is barely examined in the medical community: the effect of a women’s menstrual cycle both on symptoms of late-stage Lyme disease as well as herxing.  There is no question there is an effect, and not in a good way.  In fact, I didn’t actually feel like I ever herxed until those few days leading up to my period.  I look forward to seeing what I think will be a change for the good after treatment as well.

Life As I Know It, aka, When Inner Ears Go Bad, aka, How to Get Away With Profanity At the Dinner Table....

Three weeks ago, my life as I knew it came to a sudden, screeching halt.  No, actually it came to a swirling, creeping halt.  It took me two weeks to accept what is now my current routine: no Zumba, no exercise at all (except slow walking), no dieting, no personality, no patience, no life.  It came in such a surprisingly quiet way, one that many people still question as being legitimate.  Let me start on Tuesday, March 3rd:

We had just gone to Jump On It for (my) first time in Lindon, one of those indoor trampoline parks that inevitably seem crazy germy, and just generally crazy.  I was pacing around the place taking pictures & videos and generally just trying to not look too dorky while still getting in steps for my FitBit...  :)  (As a side note, I don't jump on trampolines anymore.  Urinary incontinence from too many babies took care of that one for me.)  I had noticed some general dizziness a couple times that day, but so minor I paid it no attention.  I am used to that feeling from so many anemic periods in my life.  It took a turn for the worse as I walked around that evening and I realized how incredibly nauseated I also was.  I also realized that it wasn't really dizziness that I was feeling, but good ole' vertigo.  It became worse as we drove, and I finally had to pull over and let Derek drive the rest of the way home.  I get violently carsick if left too long in the passenger seat, so this was a major concession on my part.  It only got worse that evening, and nothing I could do would cause it to stop, or even abate.  Laying down for a long period of time did nothing to alleviate the vertigo and nausea, and eating didn't help.  I considered maybe that I had been overdoing things with the dieting and exercise (I walked nearly 12 miles that day before--an all time high when not hiking!).  But as things unfolded over the next 24 hours, no amount of food or rest helped.  I was on a sea cruise without a boat, nauseated without a bun in the oven, and sweating profusely off and on no matter the ambient temperature.  Dade didn't make it to preschool that day because I couldn't drive.  I finally saw my doctor that night in desperation.  I wondered if I had Meniere's disease.  She agreed that it seemed suspiciously like some sort of inner ear problem.  I had no fever, no pain, no other symptoms than those associated with some sort of vestibular problem (vertigo, nausea, sweats, wicked nystagmus, spots in front of eyes, concentration probs, etc).  She also gave me a lovely antihistamine that totally snowed me.  Needless to say, I stopped taking that faster than yesterday.

You know how it is with specialists: they are impossible to get into, and when you do get in the office, you usually end up seeing a nurse.  Eight days after the initial on-set of symptoms, I finally saw the otolaryngologist's PA.  He was nice and all, but after a hearing and pressure test (both of which I passed with flying colors), told me that I probably had viral labrynthitis and there was nothing he could do for me.  He said to give it several weeks and hopefully I would get better.  I walked away crying.  That was the best he could give me?  Upon doing my own research, I realized that the most likely explanation was vestibular neuritis, a related and oft confused issue where the nerve connecting the inner ear workings to the brain gets inflamed, but no hearing loss is present.

The worst part about all of this actually isn't the vertigo or nausea.  Sure I've gained back 3 of the pounds I've been working so hard to lose.  Ya I can't drive most of the time, even the one mile to my son's preschool.  Working on the computer, watching TV, reading, being anywhere with too much stimuli, and walking fast aren't great, but I'm working around them.  Even the persistent hot flashes are bearable (and I don't mean those hot flashes because baby, I have them too, and they are waaaay different) .  What I cannot stand is the personality changes.  I tried to describe this to some friends on Friday: it feels like someone stripped away all that is civilized and decent about me and removed (what little) filter I had on my mouth.  It's funny sometimes: I find myself swearing about the littlest things, and I shake with emotion talking about a silly story I read (not because I'm cold).  It's not funny when I am lashing out at my kids and husband and when I say things in public gatherings that may not be quite as tactful as they should be.  (Hey, even I have my limits, believe it or not! :)   I've always been an introvert, meaning I have to recharge alone, or sometimes alongside Derek (as in reading next to each other with the rare interruption--yes we are old farts).  But now I have to ration my time even just around my own family so carefully.  On a day like Sunday where I am at church for 3+ hours, plus any incidental meetings or family gatherings, I not only use up all my social capital, I go into debt.  And everyone around me gets to pay for it.  It's pretty hard to feel like a good mom at this point, or even a good human being.  Add onto all this the anxiety/depression disorder that (until now) was under really good control, well, it's not really a recipe for success.

Why am I unloading upon you?  Well, first of all, because it helps me to organize my messy mind and put some of these things in a little better perspective.  More importantly, I hope that this will benefit someone else who is suffering from this problem.  Most people don't understand how someone who looks and (mostly) acts perfectly fine can be in such distress.  I can only hope that this educates those of you who may not know how to treat someone else dealing with such a bizarre condition.  For myself, I have an appointment with a different ENT/otolaryngologist tomorrow--crossing my fingers that he can give me more information and maybe even some relief.  Ciao!

UPDATE: ENT agrees that it's most like vestibular neuritis, but I get to ride the vomit comet (or equilivalent thereof) next week to make sure it's not something else, like a broken brain (oh, wait I already know I have one of those)....

May=the abrupt slide into the paradise we call summer

Did I ever tell you about the cross country club we started in our local elementary school?  It's actually the second one I've started, based on one started by an amazing PE teacher in our Michigan elementary school.  (RIP, Dekeon)

Circa 2007, Adia & Sedona with Rick Dekeon

It's really low-key: the kids just run laps after warming up, and then get little plastic tokens for completing a lap card.  At the end of the year, we have a big race and give the kids popsicles.

I didn't expect a huge turnout since it was only our first year starting the club, but would you believe we had 150+ kids?  I can't wait to see how many kids we get next year!

The elementary kids also participated in the Marathon-In-A-Month in May.  They run the last couple miles together as a school.  Sedona kicked butt and was 1st girl, and 3rd overall.  Look past Derek handing me her inhaler and see the grin she's always wearing while she runs...

It was a hot day and the kids appreciated Dade squirting them with the water bottle.  Look at those red cheeks!

Ash mostly ambled along talking with her friends and enjoying the break from classwork.  :)

The end of the school year always means lots of exciting events, including the yearly PTA fundraiser: the Extravaganza.

 I still can't get over how deftly this little 4-year-old can climb a squishy inflatable wall...

The kids also got their faces painted, ate cotton candy, and daringly rode the (1mph) train.  Dade even had his hands in the air...

One of our beloved teachers was moving at the end of the school year, so we made sure to get a photo of him with Brynn.  Sedona had him as a teacher just two years before.

Dade graduated from his first year of preschool!  And I can't get over how cute their little caps were made from a styrofoam bowl and piece of construction paper.  Dade was happy to be sitting between his two best friends from preschool.  One is in kindergarten now, but the other was born just a few days apart from Dade and will start school with him next year.

Dade with his preschool teacher, Miss Julie, and her daughter.  We absolutely adored this cozy preschool--it was such a great introduction to the social and academic setting before starting BYU preschool.

To celebrate the end of the preschool year, they had a fun water party.  Dade cracked me up with his antics on the inflatable water slide.  He's a little crazy...

Sedona also had a graduation: from 6th grade (and elementary school).  She's the tiny, little girl in the back of the other kids.  It wasn't easy getting photos of her!

She won an award for academics: it was richly deserved as she studied hard to get the grades she was awarded.

The obligatory cousin photo: we just love living so close to our family!  These two were sad to leave elementary school, but excited to move up to junior high.

We had the chance to go see a bunch of well-known authors at the local library.  They were touring for the Spirit Animals book series.  The kids were super excited to go AND to stay up late...  :)

Even though it was a juvenile series (that I hadn't read), I was super excited to see the authors: Garth Nix, Brandon Mull, Maggie Stiefvater, and Sean Williams.  Some of my all time fave authors!  Our library must have some connections because they seem to get the big names without fail when they are touring.

May means the beginning of birthday season for us!  Brynn reached the double digits so we had a few small celebrations with family members.  (Big friend party to come the next month.)

We all devoured these yummy cupcakes that came in flavors like orange creme, and raspberry lemonade...

Brynn wanted the Anna & Elsa Polly Pocket (-like) dolls for her birthday.  They were not easy to procure!  I think everyone in the world is obsessed with Frozen.  I know my girls are...

...and they are all so into imaginative play too.  I remember my younger sister and I playing Barbies for hours and hours as kids, so it's no surprise to me that they are so into the Pollys.

Ash finished the art class she had been taking since January.  They had a small exhibition and we were all suitably impressed.

Ash has always had a creative streak, like her sisters, but we never realized just how talented she was until she started taking classes.

Of course, most days that creativity gets used up in Minecraft, but hey, beggars can't be choosers, and I'd rather have my kids playing Minecraft than shoot 'em up games.

These photos make me laugh.  We were trying to make dinner and discuss our plans for the evening and the whole while, these two were just crying and sad over silly things.

Nothing we did helped so I told them I was going to take a  picture of them crying and that made them cry even harder.  I see this as future blackmail when creating a wedding video...

Still have a weird, smelly dog hanging around the house.  He looks like he died when he's sleeping.

He's also still Dade's best bud.  If I could read Sol's mind in this pic, he would be saying, "Save me, please save me!"

Different picture, same caption.  At least Dade is smiling...

That's Dade's doggy stuffed under his harness and hanging on for dear life.  Sort of how Sol is hanging on for dear sanity...

Am I the only one that sees him as a Russian babushka?  Like in Fiddler On the Roof?

The caption on this pic would just be screaming, in dog language.  Please note, Dade took most of these pictures.

And a personal favorite: we take Sol over to visit his sister Zoe at Derek's sister's house, and what do they do but beg at the back door the entire time.  It's really pathetic.  But as soon as we let them in, they wrestle and fight like always.

May in central Utah is generally too cool for swimming, especially in the dry heat.  The kids inevitably play in the water for about 3 minutes and spend the next half hour in the sun trying to stop shivering.  It's rather sad...

Dade must not have gotten the memo that he's already had croup a zillion times this year and we ended up at the ER AGAIN!  He has a collection of hospital bracelets that rival his sisters' costume jewelry.

 At least we got to see gems like this when he was high on the Decadren.  Good stuff, that.

 We got rid of his small bike, tricycle and three-wheeled scooter and pulled out the big guns this spring.  He's cruising around like a maniac, but still in training wheels, so hopefully he won't die anytime soon.

 Nap time for the two sickies.  I love seeing my two guys snuggled up together so cute.

Sedona and some of the neighbor kids worked hard to draw this humongous flower on the driveway.  Took them an hour, give or take.  We'll see how long it lasts with the sprinklers and summer rain showers...

Derek got an early birthday present of a Fitbit.  He's been keeping track of his steps and calories and hoping to lose some weight.  When he sneaks a bit of dessert, I tell him his Fitbit is going to start shocking him like a cattle prod if he's not careful.

Found Adia a new bike.  We've had two stolen out of our garage in the past 3 years now.  It's disheartening that it would happen.  Hopefully we can hold onto this one a little longer.  Doesn't she look cute on a cruiser?

Look how amazing the grass is coming in in the back?  It makes my heart so happy to see the fruits of that hard work.  It also blows my mind how huge our yard is.  Seems bigger every year.  Or at least every week when I have to mow it.

We went to visit the grave sites of our two grandpa's in SLC over Memorial Day.  It was so nice to catch up with my grandma (who we took to the graveyard).  She showed us this amazing quilt that my cousin had made out of my grandpa's old flannel work shirts.

My grandpa had these same shirts year after year, and decade after decade, and they would get nearly threadbare, but he wouldn't let my grandma replace any of them.  Seeing this quilt revived so many memories of my grandpa putting around their house and their vacation trailer.

We also enjoyed seeing my grandpa's stone.  We brought a bunch of roses from my garden to add to the flowers already there.  It had just been put in a few days ago--lucky timing.

It was a hot, sunny day, but we enjoyed the benches scattered around the cemetery and found some shade.

After dropping my grandma off at home, we went to visit the cemetery Derek's grandpa was buried in.  That was special for Derek who hadn't been there since his passing 4 years ago.

We added more flowers to it and to the other family members we found there.  Good thing my grandma suggested we take a bunch of roses from her yard along with all the roses we brought from home.

I love Mother's Day.  I've loved it since Adia was born, and especially since my kids have been old enough to go up and sing with the Primary kids on Sunday.  I think I only stopped crying when they sang about 4 years ago.  Sad I know.  But my kids and family are my focus in life and I love the sweet gifts they come up with each year.

I told Dade that there is a rule that you have to give your mom a kiss on Mother's Day.  He didn't believe me.  I told him that they made me promise to give him lots of kisses before I became a mom or they wouldn't let me be a mom.  Thankfully, he's fallen for it.  So far.

 Ash put me on the cover of People magazine.  Isn't the resemblance between the two of us amazing?

Brynn gave me a plant in a pot she decorated.  I think the plant is already dead.  (I have a black thumb.)  But I bet I can find another victim to put in it...

Adia & Sedona saved up their money and found me this amazing avocado cuber at Williams Sonoma.  It was so thoughtful--Adia knows how much I adore avocados and what a pain they are to cut up.  I have the best kids and I love watching them get older and making good choices.