My Long Road to a Diagnosis

February 14th, 2013 – A day I will remember for the rest of my life.  It was the day I found out I have Lyme disease.  It was bittersweet, and I remember sobbing, but I think they were tears of joy…more than anything, I was so happy to finally have some answers.

I received my positive test results for Lyme Disease right after returning from 6 days at a world class hospital.  No, it was not this hospital, nor any doctor I saw (ever), that helped me find my diagnosis.  While I was at this facility, I saw numerous doctors and neurologists, and had dozens of medical tests done- sometimes in testing for 10 hours a day.  It was mentally and physically exhausting, to say the least.  At the end of my time there, I was notified that all of my test results came back normal, and then sent for a psychological evaluation (although they did tons of testing, the doctors were treating me like I was a psych patient from day one).

At the end of my psych eval, the psychologist asked me why they would send someone like me to see her.  I had no history of any psychological problems or mental illness, and from the time she spent assessing me, she concluded there was no reason to believe I had any real psychological issues- other than some anxiety, which was brought on by all of the frightening symptoms I was experiencing.

I met with my main neurologist again before leaving this hospital, and he insisted that anxiety could still be the cause of these symptoms.  The only other explanation I got was that my symptoms were either in my head, or due to sleep deprivation, fibromyalgia, or some combination of those things…unless I was just making everything up for attention.

I left this hospital feeling completely defeated, yet again.  I had seen so many doctors over the course of my illness and had countless medical tests done, and still had no answers.  Not only that, but I felt ridiculed by some of these doctors.  I didn’t even want to tell them about all of my symptoms because I knew they wouldn’t believe me.  Part of me was starting to believe I was crazy…but deep down, I knew there was something very wrong with me.  There were many times I felt like I was going to die.  I could not possibly be imagining such horrible pain and suffering.  I knew there had to be an explanation, and a good one, too.

I have been lucky enough to work very closely with a family that is all too familiar with Lyme Disease.  It is only because of them that I found out what is really wrong with me, and for all of their help, I will be forever grateful.  I owe my life to them.  Without them, I would likely have spent many more years suffering and continuing to deteriorate, as well as hundreds of thousands of dollars in medical bills seeing doctors who didn’t even believe I was really sick ( I do owe thousands of dollars in bills that my insurance company is refusing to pay, but I am one of the lucky Lymies).  Maybe some doctors did believe me, and I think they had good intentions but were either unfamiliar with the disease…or too afraid to treat it.  Treating a Lyme patient can be a liability.  Some doctors have had their medical licenses revoked and have been slapped with multi-million dollar lawsuits for treating Lyme the way it sometimes needs to be treated, with long-term antibiotics.  Often, the ones filing complaints against these doctors are the insurance companies- for costing them too much money.

I should mention that I was tested for Lyme 3 times prior to finding my diagnosis, but any doctor will admit that the regular blood test they use to check for Lyme often does not detect the presence of the disease- it is a horribly inaccurate test.  So why the hell do they continue to use this test?  I’m not going to get into that now, but there is huge controversy surrounding this issue and the disease itself.  I highly recommend watching the documentary, ‘Under Our Skin‘.

Anyhow, Lyme disease has a tendency to mimic many other diseases (such as Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Multiple Sclerosis, ALS, etc.) and as a result,  is often misdiagnosed or undiagnosed.  My symptoms were initially mimicking MS, but began to change over time.  I had been to so many specialists and countless other doctors.  Each time, I was told my labs came back normal and there was nothing wrong me.  The rheumatologist I saw told me I needed to see a  therapist for these symptoms I was experiencing- he even made air quotes when he said ‘symptoms’.  What an arrogant prick.  I wish I could give him a piece of my mind.  It’s a doctor like that who should have his medical license revoked, not one who is actually doing what needs to be done to save lives.

Like I said earlier, I’m happy that at least now I know what is wrong with me, and that I’m not crazy.  I can also start to fight this monster…you can’t fight something if you don’t know what you’re fighting.  I’m currently facing the dilemma of how to treat this disease.  The Lyme has now spread through my entire body.  It is in all of my tissues, organs, eyes, brain, etc.  Unfortunately, Late Stage Lyme disease is a huge challenge to treat.  There is also much controversy about proper treatment.  I did finally find a good LLMD (Lyme Literate Medical Doctor) who really seems to understand all of this mess, and if anyone can help me, I think she can.

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