My story is not unlike many with this disease. That is probably the saddest part of the story. For those of us who did not see the tick that bit us or develop the bull’s eye rash, the road to a correct diagnosis is long, winding and with many intersections.
Looking back, I believe I was infected with Lyme Disease during the summer of 2000. I remember gardening at our beach house in Maine and being bit by what I believed to be a bee. My neck swelled where bitten but I did not develop a bull’s eye rash. Later I came down with what seemed like a bad case of the flu. Not being one to complain, I weathered that time with lots of tea and good books.
Slowly over the next four years my body started to fall apart. Headaches, severe neck pain, insomnia, joint pain, TMJ, burning mouth syndrome, lower back pain that debilitated me from most normal functioning, profuse sweating, fevers, eye pain with vision problems, tremors, difficulty walking, forgetfulness, even to the point when I couldn’t remember my route home from running errands. I couldn’t concentrate. Whatever I read would be forgotten soon afterwards. I struggled with finding the correct words or said the wrong ones. I even forgot my children’s names.
What I did know was I had a very compassionate doctor who had known me for some time and believed me when I said this was ‘not all in my head’. She heard every symptom repeatedly and tried her best to diagnose, test and treat. My thyroid gland was not working well so I started thyroid Rx replacement. My adrenal glands went haywire so I was taking Rx adrenal support. I couldn’t sleep. I could go 2 weeks awake 24/7, so I started taking Rx sleep medication. When the pain became intolerable and over the counter drugs did not bring relief I tried massage therapy, hypnosis, acupuncture, micro current treatments and Rx medication.
The lower back pain had me unable to stand straight and made it impossible to bend over. Housework and gardening stopped. What I couldn’t hire someone else to do did not get done.
I was diagnosed with Fibromyalgia at a time when most people still thought it was a mental illness. I read everything I could find and tried many different supplements. Some were helpful for short periods of time.
An x ray was taken of my lower back and then the second, third, fourth and fifth opinions were sought. I needed back surgery and wanted to be sure I had no other options and chose the best surgeon. It took me many months to commit to surgery and the long recovery. I had been repeatedly told that with my history of pain, recovery would be difficult. It was. Six months post surgery I was starting to feel better, bending, lifting and even some gardening was possible.
But, all of the other symptoms were raging. My lower back felt better, but the rest of me felt much worse.
One of the leading doctors treating and studying Fibromyalgia was speaking at a conference in Kansas in June2006. My husband and I decided to attend. Just prior to the conference I was tested for Lyme disease and heavy metal poisoning. I tested positive for Lyme, mercury and lead poisoning
I went to the conference with my test results. One doctor spoke about Lyme and other tick diseases, another spoke on toxic metal poisoning and the main doctor spoke on Fibromyalgia. They all mentioned that there was some correlation between these three illnesses along with degenerative disc disease. WOW! We sat there in shock. I showed my lab test results to the doctors’ during breaks and they said I was one of the many they have seen with all diagnoses.
I said the saddest part of the story is my not knowing I was infected. The next saddest part is the controversy surrounding treatment. The bacteria that causes Lyme disease is a spirochete. That means it is a worm like bacteria that burrows into tissue, bones, organs, muscle, blood, everywhere. It morphs itself into several forms and even will lie dormant, to strike with abandon when least expected. Bacteria’s are killed with antibiotics.
When diagnosed early the treatment is most often successful with a six week course of antibiotics. There are some doctors who believe that six weeks is excessive. If not treated aggressively and quickly, the disease will take up residence through -out the body and become quite possibly, impossible to cure.
I started my journey visiting specialists. I saw an otolaryngologist, a neurologist, a breast surgeon, dentists for consults to remove amalgam fillings (which I had removed at great expense), the partner of the doctor who discovered and named Lyme disease and another Lyme specialist. I had a week long appointment to be seen at the Mayo Clinic, which I canceled because of feeling too poorly to travel and fear of wasting more time and money with no treatment.
After six months with a Lyme specialist I returned to my primary care doctor. He had been treating patients with Lyme and other tick borne diseases, but generally they were not as ill as I was. After one year of more antibiotics, 5 months of which were self given through a PIC line, I was referred to another Lyme specialist, only this time I would be traveling more than 400 miles to be seen.
I have been with the last doctor now since February 2008. There have been weeks of misery and weeks when I was functioning as high as 80% of what I believe to be my best. We believe I have successfully killed off Babesia, but what else is hanging on is running havoc within me. I am at a point where any cyst killing antibiotics cause such extreme symptom flares I am unable to continue taking them. I have taken Bicillin injections for more than a year and am taking a break from that now, as well. (27 gauge needle with drug the consistency of Elmer’s glue injected in hip twice a week is no walk in the park.) I take many prescriptions and supplements every day. I take medication or supplements before each meal, with each meal, as needed and at bedtime. Organizing a week’s worth of medications can take me nearly an hour. Lab work is monthly and eye exams are twice a year. Phone consults most months and office visits about 4 times per year are now routine. The financial cost is astronomical; many thousands a year, even with insurance coverage for some lab work and prescriptions. For some unknown my latest toxic metal testing showed a huge increase in mercury. I am careful what I eat, mostly organic and take chelating medication every 3 days.
Until this spring I believed I would beat this illness. Now I am learning to live with it. I hear of people newly diagnosed almost every week. Their stories are often similar to mine, though some have their entire families infected. People are struggling to be heard and treated. The costs are bankrupting many. Loss of income and divorce is common. Insurance companies often don’t want to cover long term treatment. The Centers for Disease Control and the Infectious Diseases Society are at odds with the doctor’s on the front lines treating patients and conducting research. Lyme disease is everywhere. Every state in this country and every country in the world is seeing this epidemic. Testing is inaccurate and at times up to 50 % incorrect. What disease would that be acceptable to you? Cancer or HIV? Would you want a result of ‘maybe’ you have it? How would you feel if you couldn’t find a knowledgeable doctor near you willing to take the risk of being reprimanded or worse, for treating you? Could you afford seeing a doctor like I do, who doesn’t accept insurance coverage, to protect him from lawsuits and allowing himself to treat the patients that travel from all over the country, even the world to be seen? Why do we have a vaccine for our dogs and veterinarians pick up the symptoms in animals? My pet’s vet has diagnosed the owners of animals with Lyme!
This disease is not going away. It increases at alarming rates every year. Soon you or someone you love will be diagnosed. Become informed. Dress and protect yourself when outdoors. Remove any ticks safely and store in a plastic bag. Have the tick tested. Demand 6 weeks of antibiotics immediately after a suspected bite- do no wait to test positive. Then it is too late to easily treat and kill these spirochete bacteria.
- Eileen Murray (as stated in fall of 2010)