So let me begin with how I have come to where I am at now, with chronic Lyme disease. Also, please do not take my posts as medical advice, and I will try to explain everything the best I can. This is my personal experience with Lyme.
First, you don’t always get a bull’s eye rash! Or you might have a rash somewhere on your body that you don’t notice it. I didn’t think that Lyme was a problem in this area in NH and never worried about Lyme carrying ticks.
Many have asked me if I remember getting bit. I have had ticks attached to me many, many times. When I was little and would come back inside from playing, my Mom and Dad would pull ticks off myself and my brother, sometimes as many as a dozen at a time. Sometimes one or two would have attached itself to me. It was normal. No big deal.
I actually have had some neurological signs of illness from the time I was a small child. From what I was told when I was about 4, during a checkup, the doctor could not get a reflex out of my right knee, no matter how hard he tried. I have also been randomly passing out from the time I was 11 or so, from what my mother has told me. There was always some sort of a reason, such as it was hot out, or I was hungry or dehydrated. Then I began passing out more when I was a mid-teen, which was contributed to an eating disorder. But either way, this symptom of passing out has remained in my life and seemed to have no rhyme or reason for occurring.
Now looking back, I remember about the time of symptoms really noticeably started. My dog, Dozer, whom later died from complications of lyme disease (pancreatitis), slept on the the bed with me and the tics came off of him from that frontline neck ointment and I woke up with 5 tics on my face and hairline. Gross I know. But I picked them off and flushed them down the toilet. Maybe that same time my dog was infected I was too. I will never really know for sure.
Back in late 2007 to early 2008, is when I really began to really not feel right. I was having muscle aches all over, extreme fatigue, gastrointestinal issues, and randomly passing out on a consistent basis. At this point there wasn’t any excuses for passing out anymore. I would even pass out doing absolutely nothing.
I started to develop a rash all over my chest, and no one seemed to figure out what it was. It was raised, blotchy and red. It did not itch, but seemed to get worse in the sun. Throughout the years this has spread from the chest to my neck and all over my back.
I finally got my butt to the doctors after some procrastination. I did, in fact, get tested with an ELISA Lyme test back in 2008. This test is very inaccurate! If you are young and start having aches and pains, find yourself a Lyme literate doctor immediately. This was my first non-literate Lyme doctor experience. If you are reading this, you probably know all the politics and difficulty to find a doctor that is knowledgeable about Lyme. Later in my story I will explain more about that, in detail.
Demand a WESTERN BLOT. This test is much more accurate in testing Lyme, although there can be false negatives and a good doctor will treat based on clinical diagnosis.
My MD did not know what was wrong with me. He gave me an array of blood tests. He thought I may have had the autoimmune disease, Lupus, because of the rash I had and the pain I was in. He also thought that because I was having the digestive issues, I might have Crohn’s disease.
I was sent to have a colonoscopy to see if they could figure out what was going on. The Dr. said that he did not find anything unusual and attributed my symptoms to IBS. There were no revelations in my blood work. It showed I was slightly anemic, but nothing to be alarmed about.
My MD then told me I had fibromyalgia and Chronic Fatigue Syndrome. I accepted what he said, although it never felt perfectly right. Also, now knowing more about things, doctors usually give this type “diagnoses” when they cannot find the real problem. These are just fancy terms that describe your symptoms.
About a week later, this same MD called and wanted to see if I wanted to try an anti-depressant or anti-anxiety medication to ease these “syndromes”. He essentially told me that because my mother was crazy, that I was too. Nice phone call! I told him I’d think about it but slammed the phone down and have not seen him since. I was not depressed! Anyone that knows me knows that. I am not a depressed person at all. I am normally a glass half-full kinda gal. Eat a dick, MD, you don’t know shit!
For further background on the “mother is crazy” part of my last statement, my mother has dissociative identity disorder, DID for short. Many people know it as multiple personality disorder. It is characterized by having two or more distinct identities. This is not to be confused with bipolar disorder, and is also not genetic.
People that have this disorder were abused as children, or they’ve dealt with some other sort of trauma, and this is their mind’s way of coping with it. A person dissociates so they do not have to be ‘present’ during the abuse, so they don’t remember or feel the pain anymore. They are not crazy. It’s just how they coped then and how they continue to cope throughout life.
It was extremely difficult growing up in this situation. Over the years my Mom has made a lot of progress but there are still some difficult times. My Dad is the strongest person I know because he has always been by her side. That’s all I am going to say about this background as I feel they deserve some sort of privacy.
However, anyone who knows me knows some of the things I’ve had to deal with and it hasn’t, by any means, been a “normal” childhood. Definitely could have been a lot worse, but definitely not “normal.” But… what is “normal” nowadays anyways, right? I guess it was normal for me.
I had learned to accept my fibromyalgia and CFS diagnosis. Nothing really changed for a few years, still passing out, still muscle aches, and still extreme exhaustion. I was so weak with exhaustion in the morning that I would literally collapse to the floor. I had learned to set my alarm extra early and lay in bed until my legs were strong enough to stand.
I noticed some improvements from 2011 to 2012. I decided to try changing my diet. I cut gluten and it was amazing how much more energy I had. I started to walk daily and work out a few days a week on top of my workload. I noticed pounds coming off; I went from around 165 to 125ish. I looked good and felt better than I had in years. From what I know now, a common “inflammatory food” among Lymies is gluten, and cutting this eased my symptoms for quite a long time.
In April 2012, I started to have severe menstrual cramps, particularly on my right side and some umm… abnormal bleeding, you could say. I slightly thought I was going to bleed to death…it was really bad…so, I went and saw my gynecologist, whom I had not been to in a long, long time. But hey, I am young, and it’s not like I sleep around. Procrastination. Once again.
The rash, that I had mentioned, she knew what it was immediately. The lady parts doctor. Of all people! Ha! She said it was tinea versicolor, a yeast infection of the skin. She told me to wash my body with head and shoulders shampoo and use an anti-fungal cream. The rash that I had for over 4 years nearly disappeared within a week.
She sent me to go get a pelvic ultrasound as well as a transvaginal ultrasound. About a week later, I got a phone call that I had a 2.5 cm cyst on my right ovary, which I guess isn’t considered overly large. (no pun intended) Scary to hear but she assured me it was not as unusual as one would think and prescribed me progesterone to try to get it to shrink. It seemed to work for a few months, as the pain subsided and things were a little more regular.
At the end of August of 2012, I knew something was really wrong.