Let's talk headaches...

Once my headaches started, and the typical Migraine medications weren’t really helping, my primary care Doctor referred me to a Neurologist.  In September of 2015, I woke up the morning of my first Neurologist appointment, and said to my husband, I had a dream that the Neurologist looked into my left eye and said, “something is messed up with your eye.”  We both laughed about the dream and I got ready for my appointment.  I drove an hour and a half to see my first Neurologist.  He did a thorough assessment, asked me a lifetime of questions, had me walk across the room, bend down and touch my toes, etc.  He then went to do an eye exam, and as he was looking into my left eye, I said to him “Do you want to hear about my weird dream?”  I told him about it, and he looked at me and said, “There is something wrong with your eye.”  I was shocked.  When I asked what, he would only say, “it just doesn’t look the way I think it should, so I’m going to order a brain MRI.”  He also ordered a 48 hour EEG, to rule out nocturnal (nighttime) seizures (this test later came out negative for seizures).

As soon as I left the office, and had the order for my MRI in my hand, I immediately looked down at the diagnoses he put down on the order.  Being a Nurse, I knew he had to put something down to justify me having the test to the insurance company.  It was the first time I saw the word, “Papilledema.”  Since I had never heard that term before, I grabbed my phone and looked it up.  I was so scared the moment I saw what the answer to my question was:  “Papilledema is the swelling of the optic nerve as it enters the back of the eye due to raised intracranial pressure that could be caused by a brain tumor, pseudo tumor cerebri (also known as Idiopathic Intracranial Hypertension), or intracerebral hemorrhage.”   Now was the beginning of the waiting game.  I was never good at waiting games. 

The next day I had some strange things going on with my eye sight;  some blurriness, some pressure.  I called my Doctor and I was told to go to the Emergency Room.  Once there, they immediately ordered my MRI, and explained that I did in fact have elevated intracranial pressure and I needed a spinal tap to remove some of the fluid that was building up in my brain.  It was this intracranial pressure that was putting pressure up against my eyes.  You can lose your eye sight if the pressure is not controlled.  So, I had my first spinal tap, and it was confirmed that I had too much spinal fluid, and they removed the excess.  The ER Doctor explained that he wasn't sure why I had this issue going on, considering most people that have pressure without the presence of a tumor, are typically obese woman that are in their childbearing years.  I was neither of the two.  It was a mystery.  

I started to live on the Internet, searching for every symptom I could think of, searching for what had taken over my life.  I came to the conclusion over and over again:  I had Lyme disease.  I knew I lived in an area where we were crawling with ticks.  After all, my Pomeranian even had been stricken with the bacteria.  The only time I could recall being bitten was when I was in 7th grade.  I remember finding an engorged tick in my head, hidden underneath my barrette.  But that was decades ago.  Could I have contracted Lyme then?   

I was put on several different medications to try to lower the pressure in my brain over the next year.  One medication, Diamox, I had a reaction to, and another, Lasix, sending me to the ER with heart palpitations,  nearly causing me to pass out from dehydration.  Eventually I was given Topamax which I tolerate well, and it controls the pressure to make the discomfort at least tolerable.  I had seen 2 more Neurologists, a Neurosurgeon that recommended I have a shunt placed, had an MRV, an MRA, 3 more MRI’s, which all showed the same diagnosis:  Intracranial pressure with no known cause.  I also had a few lesions that showed up.  The radiologist that read the scan, wrote “insignificant lesions.”  They were insignificant to him because they weren’t on his brain!  I was still going to work every day, pretending my head didn’t feel like it was placed in a vice.  I worried and wondered what was wrong with my brain.

I made an appointment with my Primary Care Doctor to talk about having a Lyme test.  I think she was a bit hesitant to agree, considering she had just done several blood tests that she felt “would have shown some elevated inflammatory markers.”  But she did end up ordering the Lyme test.   The test came back “negative for Lyme.”  I was not giving up. 

My symptoms continued to intensify, I barely made it through my work week.  By Friday, my head pain was unbearable.  I was having severe panic attacks. I made an appointment with my Neurologist to talk about my Lyme theory.  We had a lengthy discussion, he asked me if I was having “night sweats” and I reported that I was having them almost nightly.  He agreed to order another “type of Lyme test that may be more accurate.”  He explained to my husband and I that it was a possibility that I did have Lyme, and he felt strongly enough that he was referring me to a Lyme specialist even if the test was negative.  A few days later I got the call that my test was “negative” again.  I was discouraged but ready to have a consultation with the specialist.  

The only Lyme literate Doctor is three hours away, and was booked up for three months.  I took their first available appointment.  My MRI’s had been sent over to him, and after reviewing them, he was concerned enough to have his secretary call me and move my appointment to that coming Friday.  At my appointment, he explained that I not only had Lyme, but I had a co-infection called Babesiosis which is a malaria-like bacteria that attacks the red blood cells.  He explained I’ve probably “had this for decades” (he could diagnosis this from the amount of brain inflammation I had on my MRI),  and he’s only seen “eight other cases” like mine in the 35 years he’s been practicing.  He also confirmed my Lyme tests were not accurate.  He also explained that 60% of all tests are not accurate.  That was very disheartening to hear.  The only accurate testing that I have read about is through IGeneX.  You can read about their lab here:  http://www.igenex.com/about-igenex/our-story/

I had been trying to advocate for myself for so long, but even though I had a medical background, I still could not convince the medical community around me that I had Lyme disease.  I want to encourage anyone out there that has that inner intuition, gut feeling, or any notion that you may have Lyme disease, to not give up advocating for yourself.  Keep on asking for the correct testing.  Make sure that you’re heard.  This is your life..

Thank you for following along with my story today.  For those that are ill, I hope you are all getting the answers you need to get on the road to recovery.  Please feel free to leave a comment or ask question. 

Hugs, Lisa xoxo