My Chronic Lyme Story

I am a mom living with lyme disease. I love you tube video's that have been made on lyme disease. So I just wanted to make a website and put up some superbly done Lyme video's. Watch my favorate videos, learn about lyme disease, and help raise awareness. It may help you or a loved one someday. What your doctor doesn't know can hurt or even kill you. It took too many years for me as well as many others to get diagnosed. Five years for the Lyme disease and 7 for co-infections. I was left to deteriorate and told it was either a manifestation of my imagination or fibromyalgia. Then I was misdiagnosed with fibromyalgia. I was refused test for any other diseases or illness. I felt as if I was dying and believe I would be dead today had I not left my doctor and sought help elsewhere. A friend of my said I looked as if I had fish eyes. She could see that I was very sick. I was weak, in pain, and exhausted all the time. I had seen many specialist and been to visit many ER's and even disability doctor, yet , No one, Not one doctor would test me for anything or even treat my multiple symptoms. My friend refered me to her nurse and she ran test.By this point I was so very sick even my bones hurt. It was excruciating pain by this time. Every day was hell. I was one of the lucky ones as my test came back positive on Elisa and was confirmed positive with Western Blot. Many are not so lucky and it takes even longer to get diagnosed test are not reliable with many false negatives. I had my Brain, and Lungs, attacked by Lyme disease by the time I got diagnosed. Then after inadiquate treatment my Liver was also attacked by lyme and my own immune system. Ticks can pass on lyme if impropery removed as in my case. Ticks are so tini and can be eaily missed. They numb the area they bite with there saliva and hide on your body or head. I didn't know much about ticks or lyme disease. I had a tick attachment. I also believe it attacked my brain very quickly so I couldn't remember the tick attachment until I had gotten treatment for a sinus infection left to fester for over a year. I believe I had lyme menegitus. I recieve oral antibiotics for two months. I was still very sick and getting sicker, but the sever burning headack and vertigo (dizzy off balance feeling) got much better. I also had neck pain, and they found cyst in my L5 years later. Ticks can be as tini as the period at the end of this sentence. The one I had was I didn't know if it was a tick or a black head. I heard alcohol was good to remove tick. It does get the tick off, but is a Big mistake. The tick gets agitated and reguritates the contents of its stomake passing on lyme disease and any co-infections. Ticks are active in any weather above 30 degrees. It is less likely, but if you get a tick on you doctors are ignorant to this fact, so you are more likely not to catch it or be diagnosed with lyme if you get it in the colder months. I live in the city and believe I got tick attachment from my own back yard. We diffinately have ticks in our city. I took my child to a local park, and a women was warning me about ticks. They were in the park and she had taken several off of her dog. Yet, the Neorolgist I had seen asked me when I had been out in the woods as if there were no way I could have a tick on my from the city. Our doctors don't have a clue. Another fact is your pet will be diagnosed with lyme and treated by a vetranarian, before a person is diagnosed with when they have it by there MD. If it becomes a late stage chronic illness our doctors and specialist won't treat it long enough or correctly to get you better. Even the infectious disease specialist I saw had no Idea to test for co-infections. I was with child at the time and he did not know that it could be passed in utero. However, he refused to treat me while I was wih child, because he addmitted he did not know how to treat it. An infectious disease specialist is suppose to be the expert. Lyme disease is an infectous disease. Moreover, lyme is suppose to be treated in the first trimester of pregnancy in order not to pass it in utero. I had to wait to see LLMD and did not receive treatment until my third trimest. My child seems healthly but could have undeseminated Lyme disease. Pediatricans refuse to test for it. She may have Neorolgical lyme as she has selective mutism. But is other wise a healthy child. I was not diagnosed with the co-infection Elichtreosis or treated until two years after I had my daughter. My daughter has been test since I wrote this and her test was negative with Elisa she was refused Western blot which is more accurate. I still have to receive treatment to get well It is about 13 years since tick attachment. Who would have though one tini tick could do so much damage. I am not the mother I would like to be.I was energetic and still doing gymnastics and aerobics. I was planning to open my own daycare someday or get into acting. I was about 30 years old before tick bite but still felt as if I was 20. It was however not the first tick bite. I had been bit as a child and at about 19. I visited Cape Cod MA said to be the highest Lyme Disease rate in the world. I recall having a tick on myself at least twice but knew nothing about Lyme Disease much less the fact that it has killed and can be a chronic disabling disease. I Started getting migraine headaches and since I have gotten Lyme I have researched it for years. I still forget some of what I have read and learned. But I read that Lyme can be present and you can have only a few symtoms. Migraines and reoccurring sinus infections are quite common early stage symptoms, then you will go on to develope multiple disabling symptoms Identical to Fibromyalgia and many other autoimmune diseases that mirror Lyme like M.S. Lupus, ALS, Adhd, bi-polar, depression, alzheimers, allergies, asthma, ect Over 100 system. A bit different for everyone. It effects different organ systems. You can have different co-infections and each give differnet symptoms. Plus need to be treated properly and different to get well from Lyme. They use Qunine to treat one of them as it is like having Malaria. They also need to treat you with immunosurpressants if your immune system is involved as in my case. But our regular MD's don't know that Antibiotics are needed with Immune-surpressants or permanent damage result and the lyme can also take over an organ and shut it down resulting in death. Like most lyme patients I went to several MD's and specialist. I even went to Top Boston Clinics and Boston Reumotologists, Neorologist. Allergist. Ect. Diagnosis denied. I have had some continued treatment and some improvement. But I still need to see llmd and may never fully recover, and may be disabled fovever. But I won't stop fighting or raising awareness, because it happened to me and so many others. IT CAN AND WILL HAPPEN TO MANY MORE Until the truth is out and much more is done to help prevent it like AIDS so many years ago. It can even happen to YOU or someone U love.