Getting Diagnosed

I Quit Drinking

Now I'm in my late thirties. My party days were long behind me. My kids were older, and i had quit my

bartending job. I had been working now for several years at a nursing home and at a home health care agency.  I got a part time job deejeaying on Friday and Saturday nights. I loved all my jobs. But I was exhausted. Trying to support my three kids, pay rent and all the bills and car payments and put food on the table and work three jobs was exhausting. My Lyme symptoms never had any repreives since the drinking had brought them out.

At this point in my life I was really sick. I didn't want to admit it even to  myself because I was trying so hard to be normal. And at this point, I honestly thought maybe I was a little crazy. I mean I had been to over a hundred doctors in three different states. Not one had found anything significantly wrong with me. Maybe it was just panic disorder.

At my job at the nursing home where my mom was administrator, I had been asked if I'd be interested in taking over when she decided to retire. I was so excited, I really loved this job a lot! I loved the residents there and the administrator got a free apartment with rent and all utilities paid. I felt a sigh of relief, like I would only have to work one job and have bills automatically paid for. I could finally relax with a 9-5 job and be the sick person that I was.

Getting Promotions

At the same time at my other job, I was offered an office job. I worked there for about a year and they

asked me if I'd be interested in taking a "field position." Which meant I'd be the county coordinator for my area! They were expanding to my area! I would no longer have to drive an hour to and from work and I could work right from home! I told them about my other job wanting me to train and they thought it was perfect and I could do both jobs from the office at the nursing home when the time came. In the meantime I started working from home. They downloaded all programs onto my computer and gave me a cell phone. My job was to meet new clients, evaluate them and set them up with caregivers that would be a good match for the client. I loved doing this. I loved helping people and training people and seeing people get the help they needed.

In the meantime while all this good stuff was happening around me. My symptoms were for some reason getting worse. I started getting the bad heartburn pain back. Nothing doctors gave me could help. Once they gave me Nexium through an IV. I got home and started breaking out in hives on my back. So my kids called 911 and I was rushed back to the ER. They loaded me up on Benadryl, which makes me feel terrible and called a taxi to take me home again. It was the start of no return. Now each time I got a new symptom, it would stick.

Mornings Were Brutal

Trying to get through each day was getting harder and harder. I was getting to the point where mornings

were brutal. Trying to wake up, I'd feel a buzzing crazy feeling running through my body. Almost like electricity. My vision was getting bad, like I couldn't make my eyes focus. I felt tired and just not normal. My face looked weird. It was starting to seem uneven like it was drooping on one side. My left eyelid drooped, espeically on my bad days.

This is when I started making mistakes at work.I started having memory issues. I deleted files on the computer that were really important. I was supposed to fill in for someone when they called in sick and I forgot to go. I threw my back out and once even fainted at work. Twice a resident, once at the home health care job and once at the nursing home, had to call 911 for me. I was their caregiver but they were calling 911 for me. It was so embarrassing. I knew I was getting worse.

One time I pulled up to a new client's house. I couldn't make myself get out of the car. I seriously sat there for several mintutes, in their driveway just asking myself why I couldn't make myself move. I finally got in the house and did the interview and left in a hurry. I didn't feel right.

The next day I went to another client's house. I was with my boss who wanted to go with me just to get out in the field. It was a tough case. We were all talking and filling out the contracts and the client asked me to hand her a pen. I couldn't move. I just sat there. Staring at the pen, asking myself, why I couldn't make myself move. It was like my brain wasn't connecting to my hand. I just sat there for the longest time confused. I finally picked up the pen, and handed it to her. The client whos house we were at was hiring us to take care of her husband with Parkinson's. As we stood there, he was trying to walk across the floor. He would "freeze" and have to start talking to his legs to move. Was this a coincidence or a sign? That is just what had happened to me. I couldnt' make my hand move. Is this what I had? Was this Parkinson's?

I had started seeing another doctor at the local HMO. I had been going to her for about a year and she did believe I was sick. I had had a fever for over  a year straight. A low grade fever between 99 and 100 always. I had been anemic in every blood test that she took. She was trying to figure it out. I'll call her Dr K.

So anyways, I was going to take care of another client at their home. I'll call her Rose. Normally I worked only in the office at this point or I'd go to client's houses to analyze new clients, but when someone called in, I would fill in. I was on my way to her house driving, when I got the oddest sensation. I felt like I couldn't feel my foot on the gas pedal. It felt numb but I also had the sensation that my foot was on sideways. A feeling I would later term, "dispositioning." It was like my foot was turned sideways and numb at the same time. I thought, now I'm really losing it.

So I finally got to Rose's house to help her. Again, she was another client with Parkinson's. As we were sitting there I noticed she too talked to her legs to get them to move. She explained to me that it is something Parkinson's patients do to try to get the brain signals to connect.

While we were sitting there talking about it, she was walking across the room with her walker. Her walker started moving to fast in front of her and I reached my hand out to stop it. My hand was numb. The walker hit my hand and I felt nothing. I got her situated the best I could and I went outside to call my doctor. I explained the feelings in my foot and in my hand and she told me to come in right away, she had an idea. She asked me if I had ever been tested for Lyme or Lupus. I told her I didn't know. I really didn't know anything about either disease.

So that day I went to her office and had my first blood tests for Lyme Disease in fifteen years of being sick. My first symptoms and endless doctor appointments starting around 1991 and now it was 2005. I didn't even think much about it because  I had had so many tests that never showed anything that I really didn't expect anything to come back positive.

A couple days later her nurse called, and said, "Congratulations, you have Lyme Disease." She was just as excited as I was that we had figured it out!  She said, "We are giving you a script for three weeks of Doxy but there is a small chance you won't get better."

Weird thing to say right? But that's what she said. Now I am scared of meds so I was nervous to try Doxy. But I drove like a bat out of hell to that pharmacy. I got home and started it ASAP. I wanted to be better. I remember sitting there with a fan in my face so I wouldn't hyperventilate from anxiety of starting a new med.

Shortly after starting doxy, I started getting really twitchy. I was still trying to work but my symptoms were getting too strong. One day at work I wore a trench coat trying to hide my twitching. I was standing in the office room organizing shelves, and all of a feeling I fell backwards. I have no explanation for why. It was a sensation like someone had pulled a carpet out from under me. Everyone ran in to see if I was ok. I just said yep, oops slipped sorry about scaring everyone. They left the room and it happened again.

Then on another day my boss was trying to talk to me and all I could see was little dots. His face was all pixelized like a blurry picture on your computer, and I had to look in back of him to even focus on what he was saying. he knew I was not ok. My boss told me to take some time off. He told me as much time as I needed to try to get better. They were very sweet and understanding.

I called my doctor and told her what was happening. I told her I'd be in the office that day because my sister was having surgery next door and I would like to talk to her to see if this twitching was normal. The nurses called back and said to take Benadryl. Benadryl? What was that going to help?

So anyways my symptoms not only did not improve but now I was getting more and more. I was barely able to move and pretty much just felt like I was living in a "coma." My kids had ot make my meals and I just didn't come out of the bedroom anymore. I called my doctor to make another appointment and the receptionist told me sorry the doctor just doesn't know that much about Lyme Disease and referred me to a neurologist.

While all this was happening I was moving into a different house. I was having a hard time and had been getting lost, even though the houses were only a couple blocks away from each other. More then once I pulled into the wrong driveway and my kids were like, "Mom, what are you doing?" My roomate told me I would cry all night in my sleep. I was hallucinating. I would wake up at night with spiders coming down on me or running across the wall.

I didn't have my internet hooked up yet at the new house, so I had not had a chance to google Lyme Disease. I called my brother's girlfriend and told her on the phone that I had Lyme Disease. She googled it for me. She started reading the symptoms and stages of Lyme to me over the phone. I was shocked. All these years I had obvious symptoms, as did my kids and not one doctor had diagnosed me with this, or for that matter ever thought to test me for this!

I had to stop driving due to getting lost and confused. My mom picked me up to take me to the neurologist. On the way there we stopped at Barnes and Nobles so I could start reading and learning about Lyme Disease. My first book was, "Coping with Lyme Disease," by Denise Lang. I had not read it yet, I had just purchased it on the way to the doctor and walked in carrying the book.

Right away the neurologist looked at me and said, "Why do you think you have Lyme Disease?" I was so shocked I was confused to why he seemed angry with me. I said, well, the doctor told me I have Lyme Disease so I believed her! Ha! That simple what is to believe in? So he looked right at me and said, well you don't have Lyme Disease. He then got on the phone, right outside our room and called the doctor and started to yell at her for diagnosing me with Lyme Disease! He questioned her to why she would diagnose me when my test said I was negative. I was soooo confused sitting there listenting to what was going on. Why was he so mad?

He then told her on the phone that I was just manifestsing symptoms because I had been reading about it. Hmm, I had the book in  my possesion for less then an hour but had symptoms for more then fifteen years at this point. This didn't make any sense.

He then told me that Dr K had diagnosed me because I had "some" postiive bands on the western blot. So she had called an infectious disease doctor and he told her for precautionary measures to treat me with three weeks of doxycyclene. I was really confused. Why tell me I had a disease that I really didn't? Why treat me for something if you don't think I really have it? Who was right? Did I have Lyme Disease or didn't I? And why were doctors getting mad at me?

He then referred me to the infectious disease doctor he had just talked to. He said he thought I might have either MS or Lupus and ordered blood tests and an MRI of my brain. He said if we ruled out MS and Lupus then he would "consider" Lyme. The infectious disease doctor was rude and informed me he did not believe in Chronic Lyme Disease. He said if Doxy didn't make me better in three weeks then it wasn't Lyme to begin with. He laughed and said, "You have weird symptoms, even for Lyme Disease." He did do another Lyme test. One that to this day, I have not been able to get a copy of. They just tell me the Elisa was positive but the western blot is negative. I had tried for years to get copies of that test without success.

At this point, I had seen over 100 doctors, in three different states over a course of 15 years. And this was only the start of more confusion. After the neurolist sent me to the infectous disease doctor, it began a game of different doctors just referring me to different specialists or psychiatrists. My first orginal doctor who had diagnosed me refused to see me anymore.

I felt so helpless and hopeless. I had little kids to take care of. I had to get back to work. I had to pay rent. 

Over the years these are some of the things that were said to me by different doctors.

An ER Doc when I went in because I was to weak to stand: 
"Go home and stop being a baby, and she handed me a bottle of Pedialyte."

A family practioner when I wanted second opinion on if I had Lyme or not."I am going on vacation to Mexico, you are too complicated for me. Here's a card to a psychiatrist." He then patted me on the head like I was a little kid and said, "Good luck kiddo."

My disabilty doctor that SSDI sent me to."There is no Lyme Disease in Wisconsin and there is no such thing as Chronic Lyme."

My neurologist
"I will consider Lyme if you don't have MS or Lupus."

An ER doc to my Mom
"Go buy her six bottles of Gatorade and don't let her lay down until she drinks them."

Infectious Disease Doctor after telling him my symptoms and that I was referred to him by my neurologist
"What do you want me to do?"

A second neurologist (this is 20 years into having Lyme Disease)
"Once you have a positive Lyme test you will always have one."
also
"And what do think you know about Lyme Disease?"

A third neurologist
"You have a positive Elisa but your Western Blot is not CDC positive, so you just have anxiety."

A Nurse in the ER
If you can't move your arm, then how did you get your bra on this morning?
(Later an EMG test showed nerve damage in my neck, arm and hand)


Here are my tests:

2005: Here is my first Lyme test. I have had several now and they are all basically the same. I always have a positive Elisa and a CDC negative Western Blot but do show Lyme specific bands.

On the Elisa I am positive.
On the IGG I am positive on bands 41 & 58 but two bands short for the CDC to say I am positive.
On the IGM I have band 23 positive but am one band short for the CDC to say I am positive.

Elisa= Positive
IGG bands 41 & 58 Positive

IGM= Band 23 Positive

2006: Doctors tell me I had a positive Elisa but again a negative western blot. After several attempts to get a copy of my test results, I gave up trying.

2013:
Again neurologist told me my Elisa was positive but my Western Blot was negative.