I live in upstate New York. I was a healthy 47 year old female in 2007. At work one day I started having Bells Palsy and the room was spinning. I was taken to the local ER where the nightmare began. It was not a stroke. The neurologist became puzzled about my other 57 strange symptoms I started to have for months later. I was poked and scanned over and over again for almost 2 years with MRI, CAT scans, X-rays , blood test after blood test and so on. I was hospitalized 6 times in 12 months, taken to the ER in an ambulance over and over again. I was admitted into 4 different well-known hospitals including one in New York City which is supposed to be one of the best. I was examined by 2 teams of neurologists and 14 specialists in many different fields. Two of those where infectious disease specialists in two different counties. I changed primary care doctors 3 times in one year. I was told I had MS, Lupus, Fibromyalgia, a Migraine Syndrome, Transversmyalitis, CFS, PTSS, and I was even told it was just Menopause! (Not to mention a few others I can't even pronounce.) I was bedridden for a year. I lost my job... became disabled... fought for disability insurance and came close to losing my home.
I had 6 Lyme tests done. I was told by the doctors they were negative! Well...they were negative by the CDC guidelines which are outdated and inaccurate. After much suffering I went to a LLMD ( Lyme Literate Medical Doctor) He retested me which showed that I indeed had Lyme. I also retrieved my tests from the hospital that I had been in last. It showed I had a positive test result yet the infectious disease doctor who gave me the test said it was negative because I didn't show all 5 reactive bands out of 10 according to the CDC. I had 3 bands on the test.....that is still positive! If there were NO Lyme bacteria in my blood it would be zero bands... right? No... not right! This is a disease that can hide from these tests because they are not made to target just Lyme. I also underwent 3 spinal taps during my testing days in the hospitals that did not show Lyme. But Lyme will only show up in the spinal fluid 30% of the time.Yet all of what I displayed with my symptoms pointed to Lyme Disease.
A clinical diagnosis by my infectious disease doctor at that time would have been a great help. Diagnosing the disease in the early stages is vital for recovery. My LLMD put me on oral antibiotics for 6 months. I still did not get better. Then we tried I.V. Rocephin for 6 months... not better. Then we switched to Tygacil twice a a day for the next 12 months. I started to regain my health slowly. I was able to talk, walk, and actually think again.
The bacteria had entered my brain that was breaking me down to being like a zombie. I could not have a normal conversation without slurred speech or the ability to think clear enough to preform simple tasks. Brain fog, memory loss, ear problems, Bells Palsy, vertigo, Parkinson-like shaking, muscle tremors, stiff neck and pain, pain, pain!
I went above and beyond the regular therapy for Lyme by doing herbs, acupuncture, HBO ( hyperbaric Oxygen) treatments, vitamins, minerals and other alternative solutions to eradicate the disease within me. The standard 28-day I.V. therapy provided by the CDC and the IDSA guidelines would have never been enough to help me get through it. The amount of pain and suffering I endured was unbelievable! (Not to mention the expense people ended up paying out of their pocket to get better.) The problem with this disease is that the insurance companies DO NOT want to cover the antibiotics needed. The doctors who are knowledgeable about Lyme Disease are very often put under the microscope by the insurance company. Many of the doctors who can help people are threatened by the insurance companies to have their license pulled for treating with long term antibiotics. Yet it is standard practice to treat acne problems with the same drug for an extended period of time.
There are too many people needlessly suffering all over the world from this # 1 vector borne disease right now. It will only get worse if we let it go untreated. Children are at high risk playing in the yard. The elderly are at risk sitting on the porch. Everyone who owns a pet is at risk. Everyone is at risk. That might sound a little crazy but it is true. Most people think you need to be a hiker, camper, or a woodsman to get bitten. The fact of the matter is....it's a bug! It has no boundaries and does not discriminate age, color, or religion! Bugs travel everywhere! Don't let your doctor tell you it can't be Lyme Disease if you are sick but they don't know what's wrong with you. Don't take medications for an autoimmune disease that you may NOT have like MS or Lupus. Do your own research if you are sick. Find answers to questions about your illness. Do not take an vague answer for a diagnosis. I thank God every day that I did not accept what I was told. I did what I had to do to get to where I am today. I still have some residual health issues left over from not being treated properly from the start. People who have Lyme often continue to suffer from Fibromyalgia and CFS.
Even now I continue to struggle some days but at least I am not still bedridden and I can try to help others get educated so they do not have to get to where I've been with Lyme. Most people do not even know they have Lyme. They are told that they are experiencing some other disease or that are given antidepressants or pain killers and not even tested for Lyme or other co infections that may accompany Lyme Disease.
and read for yourself. They are the International Lyme and Associated Diseases Society. They have done a tremendous amount of research. They are in tune with what's happening with Lyme yet they are not openly accepted by the medical world. The controversy is endangering all of us. The more you read about Lyme... the more you will hear the stories told by other people who went through the same ordeal as I did. The names are different but the story is the same.
Please join the campaign from ILADS to help other people hear our voices
16 WEST BIRCHWOOD DR.
SAUGERTIES, NY 12477-2104