Lyme Crimes

 

 

 

 

 …if they only tasted this good

 

 

 

 

 

 

 

 

 

I have often wondered what I have done to deserve the hard knocks of this life at every turn.

Grappling with so many unanswered questions:

Why was I always exhausted (like beyond exhausted…bone tired) even though I exercised and ate cleanly?

Why did I suffer through insufferable insomnia(like sleeping only 1-2 hours/night and sometimes not at all), even though I have a good ‘nighttime routine’ and didn’t drink much caffeine?

Why did I always struggle with my weight even though all of bloodwork would come back…’FANTASTIC’??

Why would my periods-from-hell take me down for 10 days to 2 weeks, even though all of my OB/GYN appointments came out ‘normal’?

Where are these migraines coming from even though I have identified and eliminated most of my food intolerances and/or allergens?

Why would my throat, tongue, lips, eyes swell at random?

 

Of course, there was always the ADVICE.

 

Maybe you just need a schedule.  (Really???  Because I am one of the most organized people I know and my house and kids are always clean…within reason)

Maybe you don’t have enough faith.… (Ok, literally faith in God and hope are some of the only things keeping me going)

You just need a job.  (Well, that is nice.  I had these troubles when I was employed, too.  And would you be insinuating that stay-at-home moms don’t experience challenges??)

You need to be more positive.  (I am actually one of the most positivie people I know.  That must be why my friends come to me for advice and encouragement.  Cuz, I am such a fucking downer!)

My favorite….

You are strong.  You will get through it.  (Yes, this is true….Thank God.)

 

And I realize sometimes, people just don’t know what to say.  I have been there as well.  But we need to realize when someone is truly suffering, careless words have impact.  Sometimes, we just need a caring ear and some validation; rather than  ‘I know your life sucks, but I really don’t want to hear it because it is seriously bumming me out and I don’t want to be unhappy.’   Thank God I have a loving support structure of friends and family, I cannot imagine enduring these things alone!

 

Harsh.  I know.

 

But true.

 

At least for once in my life, I have the answer.  I was officially diagnosed with Lyme, Babesia and Candida after a nasty run-in with a very moldy home we were renting.  Basically, exposure to mold, especially black mold, is like gasoline on the Lyme fire.  The myriad of symptoms that I was experiencing and barely making due with, were rearing their ugly head in full force and totally kicking my ass.

After 2 urgent care visits, 1 emergency room visit and one visit to a Primary Care Physician, I was completely baffled as to what could be causing these very sudden and crippling manifestations.  I had a range of symptoms from:

• debilitating pain in my upper spine, neck and jaw

• neurological deficits such as blurred vision, dizziness, inablility to process thoughts, chronic forgetfulness, numbness and tingling in my extremities, and weakness and clumsiness in my legs

• all of my joints were on fire

• I couldn’t sleep

• I wasn’t digesting any of my food well without crazy amount of bloating

• I was nauseous all of the time

• I was so weak, I couldn’t even hold my head up

• I had zero sex drive…like in the negative

• I was so freaking cold I would shake uncontrollably, then so hot I couldn’t cool down

• I started to notice my personality changing, which was weird and foreign to me

Sounds like fun, doesn’t it???

And what made it all the more fun was the treatment I received from some of the docs that I saw.  After explaining that I am very fit and healthy prior to these symptoms (like I said, with tedious habits I was able to keep the Lyme at bay…somewhat).  I couldn’t for the life of me understand what was happening to me or why.

I have to say the visits to Urgent care were fantastic.  They delved in and took time trying to figure it out.  The ER visit was another thing…entirely.  At this visit, I was in so much pain I almost didn’t make it.  But, I mustered through, convinced something was very wrong.  After the doc consistently reminded me in her voice of aggravation, that this ‘was not emergent’ I could see she thought I was an attention seeker, a drug seeker.  How am suppose to know it isn’t an emergency??  It sure felt like one!  I know from my sister’s experience as an RN how frustrating this can be for providers.  But this woman didn’t care, she just wanted me out of there.

Interestingly enough, I pushed for a CT scan of my most painful area in the upper back and neck, where a significant amount of degeneration (arthritis) was found.  Strange for someone who works out all the time, eats a low inflammatory diet, is only 44 with no previous incidents of arthritis…wouldn’t you say?!?!

After some prodding from my very loving and supportive husband(we need more like him in the world folks!), he kept saying he thought it was Lyme Disease.  So, off to the PCP(primary care physician) for a look.  After we had a nice chat about some of his travels, I gave him the low-down on my sudden, on-set symptoms, I told him what my theory was.  First, he said that they don’t have Lyme Disease in Southern California.  WHAT?!?  (I just told him we travel back & forth between here and Minnesota)  Then,  he basically said, “I could send you here…and here…and there…and you will just end up at the psychiatrist”.  Holy shit.  After all that he said, we can do your bloodwork, but I can just prescribe these antibiotics for you now.  Well, let’s just say I hope his golfclub doesn’t fly too far up his pretentious ass when he is golfing.

This is what we have to deal with.

Wow….just wow.

The crimes of Lyme Disease are immense.  If discovered immediately, diagnosed effectively and quickly, it is easily remedied and cured within a couple weeks of antibiotic treatment.  However, most people do not find it quickly (those ticks are sneaky) and less than a 1/3 get the tell-tale bullseye rash, that we hear so much about.  A good Lyme-literate doc would know this.  And by the time the disease starts to rear its ugly head, it gets harder and harder to treat. This is why Lyme is called the great imitator, like its cousin, Syphilis.  Syphilis and Lyme are spirochete bacteria, corkscrew in shape…. And they are smart as hell.  Syphilis, one would agree, is nasty and no joke.  It can make you very sick, even kill you.  And it has only 22 genes compared to the 132 genes of Lyme!!  Meaning…Lyme can do whatever it wants and it does!

http://The B. burgdorferi genome contains at least 132 genes encoding putative lipoproteins, but only 22 such genes are present in T. pallidum) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC208952/

The issue of Lyme Disease and more importantly, chronic Lyme, is one big basket of crazy.  It is a political and social mess.  And while all the experts are willing to ‘duke it out’ as to whether or not ‘it even exists’; people are suffering with no answers or relief.   And, in some cases dying.   We are all complicated beings with our own journey through this life and our reactions to disease and illness are no different.  For some, they may sail through Lyme disease without so much of a hiccup.  Others, depending on length of infection, immune strength, other present co-infections, gene mutations (yea, that is real thing) etc., Lyme can be life-robbing, excruciatingly painful, islolating, complicated and difficult to treat.

Such is the case for many.  However, I am not here to get into the particulars of this debate.  I am only interested in telling my story.  Hoping it will strike a chord with someone out there, who has been confused and lost…as I was for so long.

Since I have been young, I have had some weird and unexplained health issues.  A very happy and independent child, I didn’t like cuddling because I had too much to do!  I wasn’t nervous or timid.  I was actually quite curious and completely (much to my mothers chagrin)…..

FEARLESS.

If you said, “No, Shannon I don’t think you should do that”.  It was the first thing I went off to do…just to see if I could.  I had to know!  Just had to know….what things did–how they reacted.  I gave some brief thought regarding my safety, but I had an uncanny trust in myself and I knew I would be ok.

I also did not like being tied down or trapped.  My poor mother would be exhausted and sometimes she would lock me in my room for protection, so I would hopefully take a nap, which I never did.  And somehow on two seperate occasions, I removed the doorknob with my bare hands and the other time removed the air return vent in the wall, thus climbing into the wall falling asleep.  Obviously, I was trying to escape.  I was only 18 months old.  I share this, exemplifying that I wasn’t a sickly child with a sickly temperament.  I was brazen, courageous and bold.

 There was the time that I  fell into a huge underground hornets nest.  And all the times I used to get massive amounts of full bodied hives that would make my face swell shut.  And then the migraines started.  Then the insomnia.  Then the fatigue.  And so on and so on.

Things really got bad after my second baby.  I loved being pregnant the first time.  My first pregnancy was dreamy.  I felt great.  I slept great. I still rode my bike, went rollerblading, swimming, working right up to the day.  The birth was tough, but we made it out ok and she still is today a delight, my treasure.  The second pregnancy was NOT THIS WAY.  I was very sick.  Very full of water.  Didn’t sleep well. I was a mess.  In January of 2002, she was taken by emergency C-section and was perfectly healthy. (https://northeastohiogastro.com/)  And to this day she is another shining light in my life.  But, I was not.  Whatever happened to me in that pregnancy did a number on me.  I think it was one of those times that messed me up.  Over the next several years, I would be diagnosed with many different mental illness, ending up in the hospital with bi-polar disorder as my official label.  I  went through ECT therapy and was sent home with many pills….Soooo many pills.

Those were dark days.  I remember going home thinking to myself that I would be rid of these pills one day.  A-L-L of the pills.  I knew deep down that I wasn’t bipolar, but I didn’t know what was wrong with me.  I just decided to make the best of it.  Little did I know at that time, that many Lymies are misdiagnosed with mental illnesses due to the nature of that corkscrew spirochete loving the brain!  Another Lyme Crime!

The stigma of mental illness sucks.

Here came more of the unsolicited, unwanted advice.

The whispers.

The judgements.

Then in 2008, I was fighting for my life.  I ended up in the ER from a gallbladder attack.  It was serious and needed to be removed immediately.  Oh had I known what I know now about the gallbladder and Lyme…another crime.  The surgery didn’t go so well and after what was probably the 3 most painful days of my life, it was discovered that a clip had slipped off one of the bile ducts and bile was spilling all over into my body poisoning me.  (Not the post-surgery indigestion like the surgeon hinted to….(oh, doctors…))  After they fixed the clip, my adventure continued and ended up in ER again when bloodwork revealed that my bilirubin was out of control.  I had a massive staph infection coupled with a yeast infection of the blood.  My organs started shutting down.  It didn’t look good.

I cannot imagine what it must have been like to be my husband sitting there all alone handling this.  He was terrifed, but never left my side.  In my fuzzy memory, I  remember a wonderful nurse in the early hours of morning,  recommend I read The Shack.  I never saw her again.  I read the book.

Needless to say, I made it.  I fought like hell for my life.  My temper and independent nature carrying me through.  But I know God was there, too.  He was dressed like a nurse, telling me to read a wonderful book about him.

After that, I knew things needed to change…and drastically.

I have always been an avid reader of all things nutrition and health.  That was afterall, my degree in college.  So for the next 5 years, I dove in deeper;  reading what was NOT popular at the time.  Fats (all natural fats & cholesterols) were good and GMOs were the devil…things of that nature.  I really made some huge advances in my health and those around me.  I managed to purge of all of those pills I promised myself to all those years ago and was feeling better than I ever had in a very long time.

 

Then, shit hit the fan again.  Yet another crime of Lyme.

 

And now we are back to the beginning of this story.  And now you know why I have been gone for so long!

I am determined to win.  I deserve perfect, beautiful and bountiful health.  We all do!  I am determined to help others with this crazy-ass, nasty-ass disease. Nutrition was my saving grace before.  And with massive help from the wisdom of God….I know I can do it again.  With some tweaking we can forge ahead together and once and for all

……beat this.

Eat the Whole Egg!!!