Breaking the Surface...

My experience with vaccine injury began almost 13 years ago, but I wouldn’t be privy to that information until many years later.  In March of 2007, at 26 years old, I received the first round of Gardasil.  I had already been exposed to HPV and they told me it could help make it go away.  What followed was more than a decade of deteriorating health, that I still battle to this day… all because I didn’t know.  

I began to carry the weight of an all-encompassing fatigue that I just couldn’t shake, headaches that would last for days, and a cloud of depression that wouldn’t lift.  It was attributed to my thyroid.  My medication was increased and I was sent on my way.  

That May, I received the second round of Gardasil. Shortly after, I began to notice a strange tingling sensation in my fingertips.  I realized touching things didn’t quite have the same feeling it used to, though I couldn’t quite put my finger on why.  Of course, I never associated the two events… why would I?  Other than telling me to lay down for 15 minutes after receiving the shot because some people pass out, no one ever mentioned that there could be side effects I might experience.  The numbness and tingling were intermittent. I was still exhausted more often than not; and the headaches would come and go as well. 

Next were my toes. They started tingling too.  And they would get really, really cold. And the sensations started to change.  They’d get numb.  And I thought, gosh, I must have awful circulation.  I HAD been tired so much and my physical activity had slowed.  The last few years had been intense.  I must have just worn myself out.  After that? The achiness.  It started in my arms.  They felt SO heavy. Then? My shoulders and neck.  It worked its way all over my body.    Sometimes my arms would ache, sometimes my legs.  It was very random.  And I thought, I’m working too much.  I need to rest more.  And why would I think any different?  No one told me.  I didn’t know.

That September, I received the 3rd round of Gardasil.  The muscle aches intensified.  They felt like flu aches, but worse.  My joints began to ache.  The numbness and tingling in my hands and feet began to travel up my arms and legs.  But I never gave the injections I had gotten any thought.  Why would I? No one told me.  I didn’t know.  

Six weeks after the 3rd dose of aluminum filled Gardasil, I topped it off with a multi vial, mercury laden flu shot.  I’d never even had a flu shot before.  I don’t know what possessed me to get one that day.  My doctor said let’s do one while you’re here, and I said okay.  She never mentioned one single possible reaction.  That was the straw that broke the camel’s back… and I didn’t even know it. 

By January I was back in my physician’s office.  The numbness and tingling were increasingly worse.  My arms and hands would get so weak, I couldn’t pick things up.  Sometimes I couldn’t even hold a pen.  I started having searing pains in the fleshy part of my palm, under my thumbs; and the muscle and joint pain came and went.  Over the next few months she tried to control it with different thyroid medications and vitamin b12, but any relief I got was negligible.  

Nine months later, in October, she sent me to a neurologist for EMGs and Nerve Conduction Studies… both came back clean.  The brain MRI however, showed a lesion, though at the time I was told it wasn’t the cause of my symptoms.  Later on, another one was found.  In December, I was told I had carpal tunnel and now that was the cause of my pain and weakness in my hands and arms.

I didn’t receive any real answers: I didn’t get any relief. All I got was worse.  The joint pain and swelling was so bad, it was often hard to move.  I had bone pain, that would come and go.  It would emanate from what felt like the very center of my bones, with an intensity that would make me cry for help.  I had sporadic nerve pain that felt like I was getting electrical zaps all over my body.  My skin would burn, but I would be ice cold.  I could never get warm.  I had headaches that would form behind my right eyebrow with an intensity that made me writhe in pain.  I had cognitive function issues and zero short term memory.  My hip joints would stop working and sometimes, I would just fall down. And STILL, I had no idea.  Why would I?  No one told me.  I didn’t know.

Over the years I was shuffled back and forth between specialists: Neurologist; Neuro-Opthamologist; Rheumatologist; Pain Management doctor, and I was put through invasive test after test, all which came back normal.  I heard some ridiculous guesses as to what was happening to me, but one thing I NEVER heard was the word Vaccine.  I was eventually diagnosed with fibromyalgia and put on more medications than I could count.  None of them worked and eventually I stopped taking them.  All I was left with was narcotic pain management, which I would rely on when I could no longer bear the pain.  Sometimes it worked; but EVERY time it turned me into a useless pile of mush.  This is how I lived until I became pregnant with my daughter in 2013, at which point I stopped taking everything.  My pregnancy was rough, to say the least, but after my pregnancy, my flare ups lessened.  They got further apart and dare I say, even manageable… for almost 2 years.  No one had an explanation as to why, but I was certainly relieved. 

In the beginning of 2017, the flare ups returned with a vengeance.  By Thanksgiving that year I found myself bedridden for 3 days.  I was surprised, sad, and angry as all hell.  I started looking online and lo and behold, THIS time, almost a decade later, at the click of a button, TONS of information popped up.  Information that was wasn’t available the first time around. It didn’t take long before I found myself sitting there with my mouth on the floor.  I felt like I was reading MY OWN STORY!  All the way down to the specific words I had chosen to describe this pain I had no prior frame of reference for.  I learned about something called Autoimmune Syndrome Induced by Adjuvants, where the aluminum and other heavy metals build up in your body and basically poison you. That was when the first lightbulb went off.  My attacks had reappeared right after I had the first of many amalgam fillings improperly removed.  In fact, I had numerous amalgams removed throughout 2017. My attacks had reemerged with the first one and got worse with each subsequent one… and it was at this very moment, I now knew what no one had told me.  

I researched Gardasil; aluminum; and Autoimmune Syndrome Induced by Adjuvants.  I learned how Small Fiber Neuropathy was so commonly linked to this syndrome.  And I learned about the progression of connective tissue and other autoimmune diseases.  I discovered communities of girls in Colombia who were given Gardasil and suffered the SAME WAY I had.  Some even attempted suicide because they were told they were imagining their experience – don’t think I didn’t hear that a few times myself.  It ALL made sense now.  All the things no one bothered to tell me, I was finally unearthing for myself a decade later.  Talk about being late to the party.

The next day I called my old doctors and had them pull my medical records.  I already knew what I would find, but to actually see it all line up so perfectly was astounding.  Many of the details I recaptured for you here, I had long since chosen to forget, until I saw it on paper.  The timeline of how it all unfolded was so blatant I couldn’t comprehend a doctor not being able to figure this out.  I now know, not only do physicians learn little more about vaccines than how to administer them; but less than 10% of doctors can even identify what a vaccine reaction looks like.  Shortly after, I was finally graced with some answers.  A neurologist confirmed my suspicions of small fiber neuropathy.  A rheumatologist confirmed my suspicions of rheumatoid arthritis.  Unsurprisingly, there were also severely elevated markers for muscle deterioration which indicated some sort of mixed connective tissue or crossover disease.  

My faith in the medical system is gone.  I found my way to a functional neurologist who I have worked with to keep my symptoms under control.  It’s hard.  I walk a very fine line most days.  One wrong decision can throw me into a spiral that I have to then drag myself out of all over again.    

I’ll be honest, I’m still pretty angry about it; especially on days when I am incapacitated and in pain.  But more than that, I find I am grateful.  I am grateful because even with everything I went through, that I’m STILL going through, I know how amazingly lucky I am.  I know that given my genetic predispositions, my experience could have been infinitely worse.  And I am supremely grateful for everything I have learned along the way.  My education on this subject as a whole has given me the unwavering strength and confidence to stand in front of you this evening and say with completely certainty, that I will NEVER have to carry the crushing burden of one of those parents who says, “I wish I knew”.  And now… neither will you.  Choose wisely. -K.K.