It has been a while since I've updated my Lyme blog - partially due to being really busy but also because I, like many of you, get overwhelmed with talking about Lyme sometimes. It's one of those diseases that you happily know little about until it effects you or someone you care about. When I was sick I used to be on the Internet researching Lyme religiously. It consumed me!
No doctors could give me a definitive diagnosis. The "diagnosis" varied from doctor to doctor and specialist to specialist. Over the 2 years it took me to finally take matters into my own hands and see a Lyme Literate Doctor(LLD), I had been diagnosed with Multiple Sclerosis, Fibromyalgia, possible ALS (Lou Gehrig's Disease), Lead Poisoning, a Brain Aneurysm and the one that really sent my mind twirling was "Its all in your head. Your only in your twenties. You must be looking for attention because there is nothing wrong with you. You must just be going through a stressful time".
That coming from a highly respected "Blood Specialist" who never even looked at the results of my lab work before meeting with me just about sent me over the edge! But in hindsight, he was the ignorance I needed to take a stand against the medical community and their cookie cutter ways. This disease is the total opposite of text book and for many doctors, if its not "text book" they either don't know it or care enough to research outside the box. So they pass you on to someone else.
I was no longer willing to let them send me from doctor to doctor with no answers. I remember telling this doctor that I was convinced I had Lyme Disease. I told him I had set up an appointment with a LLD, had blood work sent to IGenex in California and was expecting the results with a week. He looked at me and laughed his narcissistic laugh stating, "Lyme?? There are very few diagnosed cases of that in Maine. If you want to go see a Lyme Specialist, you're wasting your money". I remember leaving his office frustrated, raged, embarrassed, deflated and yet determined to prove him wrong. And within a week........I did!
Firstly, I sent him an article released by a leading area hospital which reported that 88% of all deer ticks tested in Maine that year were testing positive for Lyme Disease. It doesn't take a genius to realize that if that many ticks in this area are infected, the number of people also suffering must be off the charts. So him telling me "There are very few diagnosed cases of that in Maine" - the only thing he was right about is people in Maine are not getting diagnosed properly! They are sadly written off or mis-diagnosed and over time Lyme becomes so debilitating they meet the criteria for another disease and the source is never treated. I can't tell you how many people I have met over the past 5 years who's Lyme has progressed to such a late stage that they were no longer able to talk or walk, required a feeding tube or were so psychologically effected that people had written them off as mentally ill. Its important to note that Lyme can demonstrate in so many ways!! It can range from all physical symptoms with some brain fog, to loss of motor control to a variety of psychiatric symptoms. Everyones body is "attacked" differently which makes this disease "The Great Imitator".
Secondly, the next week my lab results came back from IGenex and sure enough not only did I have Lyme Disease, I also has the co-infection Babesiosis (Babesia). So of course I forwarded the results to the so called "Blood Guru" - and not surprisingly he never responded. I can only hope he actually took the time to look over these things and awaken to this new untalked about epidemic!
So to anyone out there reading this........and I must say its astonishing to be followed in 12+ countries now.......Advocate Advocate Advocate!!! Sometimes we have to take matters into our own hands and realize doctors and specialist DO NOT KNOW EVERYTHING!