Lyme Disease: Stories From the Front Lines of an Epidemic – Mickie

IN HER OWN WORDS –

The day it all went wrong…..

 May 20, 2008, started off like any other day. My family and I had just moved into a new house two weeks earlier.  It was scorching hot and the only relief, however minuscule came after sundown. We had breakfast, dropped off my daughter at school and decided to go to IKEA to pick up a few things and seek shelter from the heat while we waited for my husband’s car to be serviced at a nearby garage. After two hours of shopping and lunch, we drove to the garage and collected my husband’s car. I wasn’t confident on how to find my way home so my husband told me to follow him.

The first fifteen to twenty minutes of the journey was normal. I had the radio on and the air on full blast as I weaved back and forth through the country lanes happily, not a care in the world. In the final few minutes of the country lanes, just before merging onto the A41 I drove under the lush overhanging trees, which caused the sun to flicker through the leaves like a million little camera flashes. This instantly compelled me to reach for my sunglasses to avoid further discomfort. Little did I know that my slight discomfort would turn into a full blown neurological meltdown a mere two minutes later.

My vision was blurry, my eyes were burning and my heart was racing. I was violently rocking side to side. Articulated Lorries passed me, blowing their horns. I was swerving into the other lane. Darkness engulfed me as if I was in a tunnel. Hot searing pain radiated through my skull, my face and eyes as if I had been the unwilling recipient of some medieval torture device. I thought this could have been a stroke, a seizure or even worse, an aneurysm. I was positive I was going to wreck and be annihilated on the A41, just ten minutes away from home. My life flashed before my eyes. Through the pain, sunlight and tunnel vision I could barely make out my husband’s car in front of me. He was oblivious to the near death experience that was contentiously jeopardizing my very existence. I blindly procured my mobile phone from my bag and dialed. Thankfully he answered. The rocking was so intense that I had to pull over to the side of the motorway. I explained what had happened and he returned to my aid. We sat and I cried for what seems like forever. There was no choice I had to get my car home, preferably in one piece. The hellish journey home took forever as I was driving at a snail’s pace.

what happened next ……

 When I arrived home I staggered into the house and called my GP who advised us to get to A&E, which we did.
The A&E visit was a cruel joke. I waited hours in agony only to be told that it could possibly be an intracranial berry aneurysm and sent home, with zero testing. Fear gripped me. For fourteen days I was too scared to move in case I detonated the time bomb that was sleeping within the depths of my brain. I took pain killers and slept up to twenty hours a day. That was my only escape, my only relief. As the months passed I wearily visited my GP, unable to walk unaided or sit for extended periods of time, in hopes that she would give me some reason for my newly found affliction. That hope would never arrive. The usual pleasantries that we once shared during my annual checkups were now replaced with hostility, irritation, and sarcasm. My once smiling GP had now taken on the role of a cantankerous old cow.

The pain subsided to a tolerable level after numerous anti-inflammatory drugs, antidepressants and pain killers. The photophobia and violent rocking were my constant companions. My diagnoses included a viral infection, then labyrinthitis, and finally anxiety. I was begrudgingly sent to a Neurologist and had an MRI after months of repeat visits and differences in opinion. My relationship with my GP had broken down beyond repair. I was labeled with anxiety and stress and told that nothing else could be done for me, that it was all in my head and that I would have to learn to live with it. I was at the end of my rope. No one believed me or cared other than my family. I avoided seeing her at all cost and when I was suffering unbearably I would go to A&E instead. The thought of another confrontation turned my stomach.

a chance meeting …….

As luck would have it, during one of my appointments I struck up a conversation with a lady that told me that her mother had endured the same experience and that she was under the care of a world famous Neuro-Otologist in Kent. She later sent me the details of a newspaper article written about him. In October 2008, determined to see this doctor, I wrote him a very long letter explaining my situation. My very supportive husband advised me not to get my hopes up too high, as I was dealing with an NHS doctor and they weren’t known to be very approachable unless of course, I had a referral, which had been rejected by my GP the day before.

the call …….

In November I was contacted by his secretary asking me if I would be willing to take part in a documentary about him in exchange for the private consultation fees being waived. I tearfully agreed to meet with him two weeks later. I counted down the days that I would finally get to meet this doctor. This man was my only hope. My once cheerful, positive attitude and faith in humanity had been obliterated at the hands of the NHS. He was my light at the end of the tunnel.

appointment day …….

The day of the appointment arrived. I nervously sat in the waiting room and chatted absentmindedly to the lady that was filming the documentary. Out of nowhere, he appeared, shaking my hand and smiling the entire time. We discussed my symptoms for over an hour whilst being filmed. At the end of the consultation, he slid his chair towards mine and took my hands in his and said in his very calming voice, “It’s not all in your head, you are not crazy, you have MAV (a migraine associated vertigo).” I burst into tears. Finally, someone believed that the excruciating pain, the twenty-four hour dizziness, photophobia and stroke-like symptoms were not a figment of my imagination. My medications were changed, I was given a list of foods to avoid and I left, feeling hope once again.

The medication took the edge off but I was still unable to drive, work or leave the house unattended. Simple tasks such as washing my hair, cooking, cleaning, and shopping had to be undertaken by my daughter and husband. I continued to see the doctor in Kent every four months to monitor my progress. I began vestibular rehabilitation therapy and continued with the diet. A year passed slowly and I was no better, even after combinations of a various migraine and anti-seizure medications, fifteen in total.

search for answers begins ……..

Out of desperation, in 2009 I turned to the internet for answers or ideas on how to expedite the healing process. I craved some resemblance of my old life, some form of normalcy. I read medical journals, bought every migraine book known to man and chatted with people all over the world that were plagued with this dreadful illness. I spent every waking moment, lying on the sofa with my laptop absorbing information. I attended every appointment with equipped with books, copies of articles and lists of questions to ask. He always encouraged me to be proactive with my health and healing. He was a breath of fresh air in comparison to my GP which I rarely saw after 2009 unless of course, I had to have testing done at the request of my neuro-otologist. My GP was infuriated that I bypassed her and self-referred to see him, this was often reflected in her snide remarks and refusal to adhere to his requests, at the expense of my health.

After years of testing, MAV diet, and different medications, he suggested that I have in depth hormonal testing as I had shown little improvement. This request fell on deaf ears, of course, and I was forced to pay privately and in December of 2012 I received my test results. As suspected my hormones had all flat lined and I also had Hashimoto’s disease.  (the day I asked my GP for hormone test she SCREAMED at me that she was NOT putting any further strain on NHS resources with this “voodoo medicine”. Since when are hormones “voodoo” ??
She needs to be fired!

new GP ……

February 2013 I changed GP’s and found another after she refused to refer me to an Endocrinologist. My new GP read all of my letters and test results and immediately referred me, stating that my previous care was preposterous. I was relieved that I was finally getting some answers, or so I thought. I FINALLY saw the Endocrinologist. He gave me T3 to try and told me to come back in September. He also told me that I needed to be on hormones and that he would write to my new GP. The T3 helped with the dizziness, but caused me to itch, so I stopped taking it, called the GP and explained the situation. I was PROMISED that I would be given BHRT (bio-identical hormones) to replace the depleted ones. Of course, that NEVER happened. I left that visit in tears. Let down once again.

taking matters into my own hands …….

In April 2013 I was diagnosed with chronic Lyme disease (after paying for a private test via Igenex labs in the USA), an illness that the NHS and the department of health refuse to acknowledge exist in chronic form or treat. Back to square one. NHS does NOT want to know!

I recall being bitten while back home in South Carolina in 2005. I, like most people, were misinformed about Lyme. I never had the rash or flu-like symptoms, so I filled it away in the archives of my mind.

Finally, after nearly five years of tiresome research (something that the so called professionals should have been doing), I finally know why I have been suffering needlessly and why my quality of life and the life of my family has been substandard for so long, why we have suffered emotionally, spiritually and financially.

I look back to 2008, it seems like ten thousand lifetimes ago. I assumed that I would be well in a year, at the most. That assumption could not have been further from reality. My fight for health, my fight for life, my fight with the NHS has just begun.

in-depth breakdown upon reflection from 2005 ……

Excerpt from my personal blog

2000
Dx: Hypothyroidism – Given 100mcg Levothyroxine

December 2005
Pleurisy, 2x – mega antibiotics….

June 2006
Anaphylaxis – Nearly died. Rushed to the hospital. After I was given shots and anti-histamines I was fine for an hour, then went into anaphylaxis again!! NHS failed to do any allergy testing that night!

August 2006
Saw a private allergist in London, dished out thousands, went through loads of testing, and still no known cause…?

September 2006
Started having choking sensations. Saw doctor after doctor. Told stress (of course) !!

December 2006
Saw a new doctor and had a camera shoved down my throat – dx: a hiatus hernia. Given Lansoprazole 30mg.

In August/September 2007 
I had 3 very bad ear infections in my left ear, within a 5 week period. I went to my GP and was given Gentisone drops to use 3 times a day for 7 days. Like I said this happened 3 times, so I ended up taking Gentisone for 21 days (3 times a day) During these ear infections, after using the Gentisone I started having “waves” of dizziness. They were very random and could last anywhere from a few minutes to a few hours. I was told by my GP that it was normal and to continue using them until I completed the course. After the ear infection finally cleared up, I still had random dizziness. I now know that Gentamicin is TOXIC to the ears! It is used to destroy the vestibular system in people with certain diseases in one ear so that the good ear can “take over” the balance. This is referred to as  Gentamicin Toxicity or Gentamicin Ototoxicity. GREAT !!

October 2007 
I drove 800 miles and during the trip, I felt as if the car was going to flip over. I kept having to stop and rest. After I arrived at my destination, I slept for about 12 hours and awoke refreshed and back to normal! (well apart from weird ‘female’ issues.)

December 2007
Severe liver pain, dark urine, menstrual issues, waves of dizziness. Dx: NAFLD (nonalcoholic fatty ;liver disease)

April 2008 
I took another 800-mile trip and about 50 miles away from my destination, the same thing happened again – dizziness and the sensation that my car was going to flip over! Luckily, I made it home and slept.
When I woke up I felt much better but still had random waves of dizziness…..

May 20, 2008 
My life changed forever! At the time I didn’t know what it was, no name or words to describe the feelings that I was experiencing, I just knew that it was VERY bad. It all started whilst driving home from shopping. It was a very hot day, and very sunny. I decided to drive through the country to avoid all of the major traffic. I now wonder if that triggered it! There were trees hanging over the one lane county road that I was on, which made the sunlight flicker.

Further dx: virus, labyrinthitis, anxiety (of course)

October 2008
I still had no idea what was wrong with me. After demanding an MRI, I was given one. I waited two weeks for the results to come back. That was the longest wait of my life. I was sure that I had a tumor or something very bad. The pain was unreal & I had started to have “stroke-like symptoms”. Thank God the MRI finally came back clear. Told about a ‘dizzy specialist’ in Kent – I wrote him!

November 2008 
I received a call from him (the neuro-otologist). He agreed to meet me at a private hospital in London and waive all fees if I would be willing to take part in a documentary that was being filmed about his work with balance disorders. In November 2008 after my first appointment, I was diagnosed with MAV (migraine associated vertigo). He changed my medication & agreed to see me via the NHS.

2009
Female issues… fibrocystic breasts (left only), liver pain during cycle, irregular cycles (longest 19 days – shortest 2 days)
Tried and tested 15 meds for ‘MAV’
Started taking milk thistle for NAFLD, had another liver scan and NAFLD GONE – doctors were scratching their heads. My liver is like NEW !!
Tried MAV diet, lost 60 pounds, STILL feel like crap – does not work for me!

In 2012 
I met Jeannie. She had actually PROVED what I had thought all alone (that it was hormone related) Since then, I have taken her VEDA story to my neuro-otologist and he agreed that after trying 11 different meds, that it MUST be hormonal. He wrote to my GP to refer me to see an Endo and GYN asap!

December 2012
Had a canary club complete hormone test. WOW!! see results below!! Dr. S was right & so was I !! Also had Dx: Hashimoto’s Disease   – NEVER saw that coming!!

January 2013
Still fighting with GP to get a GYN referral – Changed GP’s!

February 2013
Had the appointment with the new GP. He is really great!! I feel like a weight has been lifted! He actually listens!
In a nutshell, I am waiting for the appointment with the Endo. GP says that he will start me on BHRT as soon as I have all of the Endo testing done first (don’t want to mess around with the test results!) Excited now! 🙂

April 2013
Saw Endocrinologist – laughable to say the least! Stated me on T3.
Got my Igenex tests back – I have Lyme Disease!!

May 2013
Returned to GP. He acted like a complete ass!! No BHRT!! Lied too again 😦

May 28, 2013
Spoke to Dr. S (my neuro-otologist) on the phone. He is astounded at the lack of ‘action’ by my GP, Endo, etc. He is writing to my GP to ask that I be referred to an infectious disease doctor (for the Lyme), and also a GYN to start me on Bio-identical hormones. He said that the hormonal imbalances & adrenal issues are feeding the Lyme! I suspected this all along! I have been reading up on the Lyme/HPA axis connection, so makes sense to me!

Will update as the saga continues!!

 

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