Quote From: wkndrzI don't really know how long I've been ill, but at this point I believe it has been since sometime in my childhood. Since I had gradually worsening symptoms, and had them for so long I didn't know that the way I felt was different from anyone else.
I had doctors rolling their eyes at me because they couldn't believe I would have sinus infections for six weeks at least twice a year. They didn't understand how I could be ill and not recover in the "normal time." I was even hospitalized for depression. I came out worse than when I went in, and I now know the problem was not depression at all, it was the fatigue from Lyme , plus a lot of stressors that combined to push me over the edge and just need a break from my life to get some rest.
Finally, by the time I turned 50 my problems had escalated to a point I could no longer ignore them. I was in constant pain, my muscles wouldn't relax, I was so tired I would put my head down on a table while I was teaching to get some rest.
I could no longer project my voice, so my students couldn't hear me, and finally I couldn't even stand or sit without becoming overwhelmingly fatigued, and having a strong urge to lie down. There was only one chair in the entire building which was comfortable for me to sit in, so I had to take it with me, where I went.
I had severe cognitive problems, becoming unable to understand how to teach math lessons I had taught in the past. Not being able to read more than a few lines of print at a time, making it quite difficult to read and analyze my students' written assignments.
I left the job I loved and after about three more months of continually worsening symptoms I was finally diagnosed with Chronic Fatigue Syndrome, Fibromyalgia, and Neurally Mediated Hypotension. I was on short term, then long term disability. After over 18 months of rejections I was finally approved for Social Security Disability.
I kept reading on message boards about people with former diagnoses like mine who had since been diagnosed with Chronic Lyme Disease. The first time I approached my doctor he poo-pooed the idea.
A year later he finally did the correct test, but he was not yet knowledgeable enough to read it correctly and pick up on the fact that I was positive, despite what the test told him., In the past six months he has educated himself on Lyme Disease and when he tested me again he made the clinical diagnosis of Lyme, based on my test results and my symptoms.
I have read a lot in the past two months about Lyme. One thing I have learned is that it is called one of the "Great Imitators." That means that the symptoms are similar too many other syndromes and illnesses. Besides those I have others include MS, Lupus, Meniere's, and other "autoimmune illnesses."
The key to getting better is long-term antibiotics, or using an alternative source of antibacterial supplements. The CDC's recommended course of antibiotics will not cure anyone who has long-term Lyme. What is needed is long-term care from a knowledgeable health care provider.
I've also learned that some of the best in the country are being persecuted for thinking outside the box and offering their patients care that actually helps them improve. It's a fight with insurance companies over the right to have long-term antibiotics and many of these few LLMDs (Lyme Literate MD) do not take health insurance.
Is it worth the hassles? You bet it is! I now have hope that I may improve at some point. That is huge compared to my former prognosis.
So, how did I get through all these years of declining health, losing my 24 year marriage, becoming unable to work? First of all, I had tremendous support from two friends who have chronic illnesses. We were in almost daily contact for quite a while. In fact I still am in touch regularly with a friend out of state.
They taught me that I needed to keep a positive outlook. I need to find what I was still able to do and focus on that, rather than what I could no longer do. It took some practice, but I have completely turned my attitude around.
My faith also grew incredibly stronger during this period. I learned to go to God with all my problems an dhow to turn them over the Him, leaving me with a much lighter load and less stress. I don' always know how things will happen, but I do believe that ways to improve my situation will open themselves to me so I an take advantage e of them. You can call it coincidence, a window opening when a door was closed, or answered prayer. I prefer the latter.
Now I moderate an online self-help course for people with chronic illness, I have started volunteering at a nearby elementary school. I can only manage one hour a week, but I really enjoy my time there and it's exciting to be thinking of new ways to help the students I tutor understand what they really need to know.
Even when I thought I was not going to be able to improve I found that by surrounding myself with positive people and learning to live within my limitations, while looking for new opportunities that would fit in with my lifestyle were tremendously helpful in adjusting to my new lifestyle.
There is a cure for chronic Lyme. Please see www.marshallprotocol.com and www.AutoimmunityResearch.org.
LeAnne
