Getting a Diagnosis....REALLY?

If it looks likes Lyme, acts like Lyme, walks, talks and smells like Lyme, and your blood says it's Lyme, then, of course it's Lyme, Right?

Well, one would think. One would think that only having one Lyme band would constitute a doctor to say, "Well, maybe not. It could be something else." What they don't know, (and sometimes DO but won't admit) that sometimes Lyme disease will show it's ugly symptoms without showing any indication in your lab report. Usually it becomes more evident in blood testing only after treatment has begun.

EVEN IF you are CDC positive in a blood test, many, well most doctors will tell you that "you do not have lyme disease"....I am not just speaking for myself when I say that even when you have that test and all the symptoms to go along with it, you will probably still see multiple doctors before you hear "you have lyme disease."

 This is for many reasons, such as lack of educating our doctors in even the best medical universities and many other complicated, political reasons which would be long enough to write a book. Anyway, those of us who suffer are caught up in the middle, and all we want is one thing....treatment and health.

I was new at this and was quite shocked that NO DOCTOR would admit that I had Lyme. I mean what was the big deal? Just give me the diagnosis and let's start treatment so I can get better in a few months and get on with my life! Right? Not so fast.

When People told me that I had to "pay out of pocket" to get treated for Lyme, I refused to believe that, and continued seeing doctors that took my insurance and kept getting turned away because "lyme disease did not happen in Florida" and "chronic lyme didn't exist."

When I finally gave in and paid $350 to see an LLMD (lyme literate medical doctor) I was angry that I had to pay "so much" BUT was so happy when that doctor told me that yes, in fact I did have lyme disease. I was thrilled to get a diagnosis, FINALLY, as I think most of us are, not because we are happy to be ill, but happy to have finally found someone to put a name on our condition so that we can start treatment. We happily go to the pharmacy, get out bottle of doxycycline, thinking that all will be well soon.

 I quickly found through my own research and from others with lyme that this disease was extremely complicated and caused other underlying diseases, co-infections. Also autoimmune disorders can occur along with harm and involvement to virtually all parts of the body, including the central nervous system. Although I liked my doctor, I found that he did not know enough about the complicated disease.

I will get into more aspects of this disease in later days and posts, but a person with lyme disease quickly learns that their entire life changes. Everything. You become a different person emotionally, physically, spiritually, financially, academically. Your medicine cabinet is now a pharmacy and your kitchen in now a health food store. Your house had medical equipment galore.

My first LLMD, a half hour drive, turned into a second LLMD, an 8 hour drive, and then (and currently) into a third LLMD, a 2 1/2 hour flight. Fast forward to 2012. I'm still fighting, I do not know where the end is, but I fight.

People who have had lyme disease for some time and read this will understand every word....those who have just discovered that lyme may be their problem may be scared when reading this. And it can be scary! But make no mistake, if you stay focused and keep your eye on the prize (health) you can and will beat this.

You fall, you get back up. You cry, you wipe your tears. Lyme beats you up, you beat it back!! You never give up, because there is hope, and for many people I know, including myself, you become a better, stronger, wiser person.

During the days of treatment, life is very challenging, as you will read in days to come.

Also, I wanted to point out (and I should have in the beginning) that many people with lyme suffer from neurological problems and it is hard to read or follow along, which is why I try to really break up my paragraphs. Also, for many it is hard to concentrate, find the right words or stay focused on a subject.

 I have this problem, so if I seem to "jump around" or not make the best sense, I apologize, but I want this to be real and I am not trying to win an award for the best grammar or the most well-versed blog. This is a blog from a person who suffers from Lyme, not to be confused with a best-selling author, and I'll even throw in an "lol" to finish that!

I welcome your comments, always!!! If you want to follow along with my posts via email, just click the link at top right of the page. Thanks for reading, and until my next post, be well, and remember that with anything in life, giving up is never an option!! ;)

And this is how it began.....

I created this blog because I want to be able to help people who get diagnosed with Lyme Disease, co-infections and all that comes with it. I remember how little I knew in the beginning and how lost I felt. This experience has changed my life and I have learned so much in every aspect of life.

 If the words I write in the upcoming days could help even ONE person, whether it be with diet, ways to cope with the disease or anything at all, I would be thrilled!! My first entry will be my story.

My name is Janet, I am a 42 year old Wife, Mom of four and Grandma of one. Up until the age of 36, I was healthy. When I say healthy, I mean healthy....never in my life had any health problems. I ate very healthy, lifted weights and did cardio 5-6 days a week. I was fit, strong, and full of energy. Life wasn't perfect, as it never is, but very close. Little did I realize what lie ahead....

In September of 2006, I began to get episodes of being lightheaded. They would come and go. Not too bad, but I would make myself a bowl of oatmeal and as I carried it from the kitchen counter to the kitchen table, I would drop it and watch it crash on the floor. This happened 3 or 4 times, I attributed this and being lightheaded to working out quite a lot and maybe needed extra nutrients.

 Then, I began falling down my short flight of 8 stairs, and I thought I was just being clumsy. Continued my daily life, until my fourth fall, when I had hurt my back pretty badly and had to go to the ER for an x-ray and take time to rest and heal. Within one week, I woke up with a gnawing pain in the center of my chest. Thought it was heartburn, took some antacid and went back to sleep. The pain got worse and worse, so bad that I thought I was having a heart attack.

 I went back to the ER, my heart was fine...but my stomach was not....I had 6 bleeding peptic ulcers and lost 2 pints of blood. The Doctors had NO explanation as to what caused these ulcers. A mystery. I was sent home with 3 prescriptions, and healed within a couple of months. What I thought was a freak incident was not at all....later I would come to realize that these were my first symptoms of Lyme.

I did heal. However, it was discovered in the hospital that my thyroid was not working properly so I was put on Synthroid. Also, my blood pressure had begun to run low, again I thought nothing of that.

 I felt pretty good again, until 2008 when my right shoulder tendons were "torn".....I went through a very painful surgery and 10 week recovery period, it took quite awhile to heal, almost a year, when my left shoulder began to hurt.....I refused surgery that time because I didn't want to go through the pain and rehab all over again.

Fast forward to July of 2010....I was driving home with my family from Michigan and my left hand began to get numb. I thought it must be from browsing on my smartphone. When we got home, it got numb and tingly again, as did my entire left arm, so back to the ER I went - fearing heart problems or stroke. A complete workup was done and all tests were fine, probably a pinched nerve they said. I went home.

In the days to come my symptoms got worse. Pains in my hands, feet, muscles all over, body twitching all over, chest pains, numbing/tingling in the extremities and face, sometimes I felt like my head was clogged, some foods were bothering me, (I'd never had allergies) and I found myself crying in bed.


Desperate and searching the Internet for answers since the Doctors had none, I found a Breast Implant Sickness support forum. I had implants, and all of these women had my symptoms, so I was so grateful to have found support!! I found a great Surgeon and quickly scheduled a date to have my implants removed, an expensive procedure that my insurance would not cover as they did not believe the implants were making me sick (although many women do get sick from their implants). I woke up from the surgery in tears of joy, celebrating the fact that the culprits of my ailments were gone and I was going to get better! I did not.....

My symptoms continued to decline. My surgeon told me that it would take time for everything in my body to settle down after the implant removal, still....I had an instinct there was something more. In the days to follow I saw several doctors and several tests were performed. My regular blood work readings were perfect. My tests were perfect. Only imperfections in my rheumatological blood work.

 I was diagnosed with nothing that could be certain, but I "probably" had: lupus, sjogrens, vasculitis, fibromyalgia, and possibly MS. I refused to believe any of this, and I refused the steroid drugs the Doctors wanted me to take.

I was given the name of a Naturopath that was near me, who did Electro Dermal Screening. I was skeptical, but desperate. I went to see her, again, out of pocket. She tested me and said, "Janet, your problem is not what the Doctors told you....your problem is Lyme disease."  Hmmm.

I searched and found some Lyme support groups on the Internet, had no idea what to do or what Lyme Disease was all about. I took the advice of a few "veterans" and went to my PCP and asked them to test me for Lyme. IgM Band 23 came back positive, that was it, that was all I needed. I had Lyme Disease. And so the journey started.