Lyme Disease: I Am 30 Years Undiagnosed And Ask Why The Politics Of Medicine Let Me Suffer

08/23/2016 06:23 pm ET Updated Aug 27, 2016

I feel I have almost exhausted my life, and I have just crossed over into my 40s. I look young enough that millennials even flirt with me, but what is going on inside me is another story. After tremendously debilitating symptoms that have nearly derailed everything about me, I have resigned to learn, talk and utilize my talents about my experience and the current landscape of Lyme disease and other tick-borne infections.  

It’s a storm of crap any which way you look at it. The time is overdue for action on behalf of patients like me, estimated that 330,000 are infected per year in the U.S, with 20 percent or more becoming long-term illnesses.

Patients are being SCREWED, and after a lifetime of doctors and bills, I’ve only now found answers:

Since I was around 12, I’ve been sick. I started with habitual pain―especially a never-ending burning neck; stuck-to-the-floor exhaustion; light sensitivities where I would hide in the top of my closet with the doors closed (light caused stabbing headaches); depression; inability to exercise; arthritis and joint pain; frequent, sometimes monthly, stomach flus; and episodic, seemingly unrelated, illnesses that have increased in frequency as I have trudged through my adult life. These commenced a downward spiral a little over three years ago after a head-on car collision.  

I sit at home now utilizing respite time of a doctor suggested short term medical leave from work, and here, my path has become clear, at least clearer.  Now, I can only see my subsequent decline with the reflection time.  I can only “see” or understand my predicament with fleeting clarity in between the times where I can’t think at all.  Sometimes I have no memory, whether accessing the past or creating new ones.  The terms frustration and anger don’t begin to capture how I feel, just like people with tick-borne illnesses know the term fatigue fails in describing their perpetual, cellular exhaustion.

In early high school, I suspected that my physical pain was worse than others’ pain, knowing by how I was rendered useless so many times, especially during my menses when it finally came at nearly age 16.  I hardly was able to get up out of bed, regardless of the time of the month.  My doctor thought something was delaying my period, also adding into the mystery an emergency surgery I had at 15 from a ruptured, unknown-origin cyst in my left breast along with those hormonal delays.  

I did have good days, since Lyme symptoms are cyclical, each month, but I also know I deserve an academy award for pretending to be normal during others.  As my symptoms progressed, however, I cannot remember any good days in past five or so years.

I could go into an exhaustive progression of all of my symptoms, but I’ll leave you with a few more to give you an impressionist’s image, like when I was 18 (as well as 27, 31 & 35) going to the ER for heart palpitations and pain; or my habitual inability to sleep; or when I was 21 I noticed I no longer could differentiate hot and cold in my feet alongside their constant burning; or at 29 my hand tightened up into a ball for the first time that wouldn’t release for over a day; or even at 30 when I went to an eye doctor because I was worried I would injure someone while driving because of symptoms of what I now know are from optic neuritis; or my hundreds of bouts of violent regurgitation and diarrhea; or at 39 when my sciatica and weakness became so bad I was hospitalized for not being able to walk right; or my head and hand tremors that began within the last year; and the slow realization my brain function is glaringly inhibited at times.  

These are all typical symptoms of Lyme that doctors habitually misdiagnosed and not one of them recognized that it might be the spiral-shaped Lyme bacteria drilling into more and more of my body’s cells.  Again, not one doctor looked in the right direction and every single one told me these were psychosomatic.

This is just a small sample of my progressively increasing symptoms and journey through the medical establishment in my lifetime.  My life has been defined by pain, moving up, around, right and left throughout my body.  And when I say pain, the term doesn’t quite capture the extreme burning from the inside out, exponentially trumping the feelings of injury pain we all know so well.

I am absolutely not alone.  I am not here to get you to listen to every symptom―something I do wish my friends and family could swallow―but to ask you, the reader, a favor.  I ask each of you to understand that people are really, really sick and it’s time to call bullsh*t on the political environment around this disease.

The backdrop of Lyme disease is a sh*t show and the patients are being penalized.  Please try and understand us:  

People like me need your voice and action.  

This disease could affect anyone, and I promise, your activism shouldn’t hurt in the least.  I’ve come up with 3 steps for you to understand Lyme disease without going into all the stats that tend to make people tune out.

Step one asks you to grasp that us patients are truly sick and that the infection lives inside cells, especially in the Central Nervous System (that’s the brain too) and all other tissues.  The pain is unyielding and we are TRULY ill, not lazy or champions of psychosomatic complaints. People die from Lyme and coinfections every day and they may not look that different on the outside, just tired perhaps.

Step two is to know the longer you go untreated, the worse the prognosis.  What that prognosis is is hotly debated and there isn’t an easy treatment.  There is no magic pill.  Just like having strep throat is a completely different illness than if strep settles in the heart, “Lyme disease” can vary from a new, flu-like illness to a debilitating major disease once it establishes itself throughout the body.  Sometimes, like with strep or staff, the bacteria can kill very quickly if it attacks just the right spot.  Long-term Lyme infections yield majorly debilitated patients and we need you to see through the crap and understand this.

Step three is internalizing that there is a medical sh*t storm over how Lyme disease progresses and what causes symptoms lasting longer than the acute (new) phase.  The testing is horrid and doctors can’t even begin to know how to consistently diagnose it, much less treat it, unless they’re specially trained.  Add in insurance companies’ dictation of dogmatic diagnosis and treatment guidelines based on statements from the establishment―translating to a lack of coverage―and we have a large-scale patient failure.

It’s sickening to me, literally, because as the sides fight, patients like me lose.   

This is the largest medical black eye this country has ever seen, although reminiscent of the government’s lack of acknowledgment and research funding of HIV in the 80’s.  

The Layperson’s Backdrop of the Fight:

The establishment (IDSA & CDC) rides the concept that Lyme is hard to get and easy to treat, like a strep bacteria, and publically bombasts the other side for the use of long-term antibiotics.  It’s important to note that some bacterias ARE hard to treat, like tuberculosis, leprosy or advanced syphilis, requiring long-term antibiotics. This group in power often says there is nothing they can clinically do for the care of longer-term symptoms because patients absolutely do not have a long-term Lyme infection.  They cite their own studies and promote this dogmatic approach to minimal treatment, and disregard patients’ health complaints if they persist after the 10 or 30-day treatment of antibiotics.  

Their heels are in the sand and it’s time to make them get up and take a walk into the modern landscape of tick-borne infection science. 

The new and ever-growing, clinically-birthed perspective (ILADS) that persistent infections of Lyme DO exist are activists for patients and fight to heal them.  They also cite their own studies that now include a complex rubric of why patients are so ill, including proof Lyme persists in the body.  The blanketed use of long-term antibiotics has even been revised with their ongoing research, but that isn’t cited by the establishment.  The establishment ignores these studies and any voices from the other side painting them as quacks to keep people from listening to them.  The establishment is not only ignoring real science, which is extremely complex, they are fighting it.  

There was even an antitrust investigation against the establishment in 2006, and you can read about these ongoing medical wars elsewhere.  Like blind politicians hating everything on the other side, the establishment is walling itself up against any voice outside its own, and hurting patients as it does this.  

The parallels between climate change deniers and the Lyme establishment who all stick their fat fingers in their ears using simple formula science terms to refute complex studies is uncanny. 

The simple fact this argument is still going on after years and years of this crap is beyond a disservice to us; it values us patients’ lives as nothing.  It is beyond time to get over ourselves and work for the patients, restoring value through treatment.  Because right now, us patients are left to search, be ridiculed as nuts, pay for our own treatment and ultimately get sicker and sicker.  Patients wait while this war of semantics of “chronic infection,” “long-term antibiotics,” “Post Treatment Lyme Disease Syndrome,” etc. is argued.  Cut this sh*t out.  Damn it, we hurt. We are dying.  We are going broke.  There are hundreds of thousands of us.  Now is the time for you to step in and stop this fight.  

This is Where I Implore You; Yes, That’s You:

Be a voice on the side of science, which is a complex, hard-to-conceptualize matrix.  See what it and patients tell us about getting better and let the world know you care about your infected neighbors and they deserve this fight to be over.  A quick email to your local representative, the POTUS or public prayer at your church can start the awareness we need.  Brainstorm what your role can be.  This is a humanitarian necessity. Talk about it with your friends.  Talk about it over coffee or happy hour.  Talk about it as you pick your kids up or at lunch with your coworkers.  Make this conversation commonplace. 

Cut out this fight and go for science-based treatment―look at the newer school of scientists and clinicians who have dedicated their lives to helping people like me, not dogmatic approaches that brush me off as sensational and leave me to suffer through my symptoms.  Follow the lead of the Hippocratic Oath and help heal patients. 

The Time is NOW to Call Bullsh*t:

I can’t begin to express how sick I am of these “Lyme Wars.”  It’s hurt me exponentially.  It’s probably shortened my life and certainly diminished the quality of it.  I want some money thrown at this disease to stop this fight.  Look at the new research.  This takes the government and NGO’s spending money to finally study Lyme disease and other tick-borne infections appropriately.  

This cultural divide sits on the shoulders of patients who are left holding the blame and responsibility of this disease, both in not being treated under insurance and in the burden of paying for treatment outside their coverage.

We need you to speak up. 

Lyme is real.  Long-term infections debilitate and sometimes kill people.   The establishment is denying this.  Believe your neighbors and have empathy for their illness.  Understand it.  Speak up and demand this epidemic is studied and patients are treated.  

 

This has gone on far too long.  

 

 

 

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