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May 2017

Healing Lyme Disease My Story Self-Love

Lyme Crimes

May 16, 2017

 …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/ read more