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Lyme disease help?

Latent Stage Lyme Disease help?

  • I'm Melanie I am 25 years old. I am currently going to school for Dental Hygiene, and have an Associates in Liberal Studies along with a Bachelor's in Journalism. When I was 17 years old I was in the woods near a pond in northern Maine tanning on the ground when something bit me in my right thigh. I immediately swiped it off as it hurt and to this day don't know what bit me. Later that day I had an 8 inch diameter perfectly round raised circle that was sunburn red and warm to the touch. I don't think it ever turned into a bullseye though from my memory of it. We went to the ER and I was given an antibiotic. From that time on I became a very different person to the girl I had been previous to the bite. I became severely depressed and anxious. Most of my senior year was spent skipping school to sleep, going to the doctors for pains and fears and symptoms they never really paid any attention to besides the chronic tachycardia which was diagnosed after several halter monitors ekgs and a trip to a cardiologist. We still don't know why I have it and why it cropped up but I have it to this day, and it outgrows my beta blocker every few years, and a stronger dose is needed to keep my heart rate from soaring. I am on an anti-depressant and still have severe breakthrough anxiety and depression with the meds. I was always a very nervous girl right from childhood, but it skyrocketed after that summer and has never come back down. I medicate it and have learned to live with it and be used to it, but like I said it never subsided really. Since my senior year I have lived a relatively normal life I went to school, graduated, worked, but all this I have done in a way very different from those around me. I still sleep a ton, I'm always tired, but have severe insomnia, I'm depressed have anxiety, and though I'm outgoing I don't care to be around people or leave the house. I need hours and hours a day where I can lay in bed undisturbed and just rest and relax or I panic and become very depressed. I gained a hundred pounds in the two years following my bite in 2002 and went from an active cheerleader with lots of friends and a busy social calendar to a girl just trying to play the part and get by as well as she could with what felt like a whole new body and personality. I was tested for Lyme Disease in that first year which came back negative. However, I'm starting to wonder if I'm one of the many who had a false negative. I have absolutely no insurance, and have been denied for MaineCare (Maine's Free insurance) for disability from anxiety/depression/heart issues and am working very part time while I go to school. I don't know what I can do or where to go to be sure that I'm tested in every way I need to be to see if I do have Latent Stage Lyme Disease. If I could get the diagnosis I believe I'd be able to get MaineCare and be on my way to an Infectious Disease Doctor who would be able to treat me the way I'd need to be treated to get this under control. If you have advice or any information feel free to message me or answer here. I hope I can figure this out soon!

  • Answer:

    Here's a link to a news article about the recently formed organization MaineLyme http://www.pressherald.com/news/Group-starts-spreading-word-about-Lyme-disease-in-Maine.html Perhaps they can help you with resources in your area. Here's some general thoughts. Yes, Lyme disease can cause all of the symptoms you describe. Yes, the standard lab tests for Lyme are highly unreliable--often say you don't have it, when you actually do. No, you don't want to go to an Infectious Diseases doctor. For long and involved reasons, they are highly unlikely to give you the treatment you need. (Sad but true.) You must educate yourself about the disease, so you can get better. Here's some starting places: http://www.lymedisease.org http://www.ilads.org http://www.canlyme.com http://www.lymeinfo.net http://www.lymediseaseassociation.org http://www.lymenet.org http://www.lymedoctor.com http://www.touchedbylyme.org http://www.facebook.com/lymedisease.org

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My mother has had chronic Lyme Disease for the past 2 years. It took forever for her to get a diagnoses for it. She visited 21 doctors in total who all either misdiagnosed her, told her the pain is all in her head, or told her she was simply depressed (well, obviously she was depressed because she was in pain every day with doctors who couldn't diagnose and treat her properly). Well, a retired nurse finally listened to my mother's symptoms and said "That's Lyme Disease." My mother then looked up the symptoms for Lyme Disease and discovered the nurse was correct. She had practically every symptom of Lyme Disease there was. Also, my mother used to hike a lot in the Delaware Water Gap, so that explains where the tick could have possibly come from. It took her awhile longer after finding out it was Lyme Disease to find a Lyme literate doctor who has done miracles in the past. He has gotten children out of wheel chairs with Lyme Disease, he has gotten those who were termed "mentally ill" better again when he started treated them for Lyme Disease, he has gotten people to get the strength back to walk up the stairs again after treating them as well. He does an excellent job, but it is VERY expensive. He doesn't take insurance for it either because those who take insurance usually end up getting shut down later on because the insurance companies complain about them taking too much money from them (sickening isn't it? How money means more to insurance than peoples life and well being). So what my mother has to do is submit the bills to the insurance herself, but even so she still pays a heavy amount out of pocket for her treatment. In fact, both my parents have Lyme disease (my mother has it a lot worse though than my dad). Together they pay between $600-$800 for their treatment OUT OF POCKET! The insurance pays the rest, but it is still a killer on my parents money. So you really just need to search for a Lyme Literate doctor to treat you. One that does not take insurance because my mother did go to another Lyme Literate doctor before her current doctor, only to have him get shut down by the government as a result of him taking insurance and costing insurance companies too much money. And if you ever need anymore information you can feel free to message me. My parents and I know so much about this disease and the controversy. So just send me an email if you really need it. EDIT: Oh, and my mother's treatment has been going on for quite some time now. It's because it is chronic, so the treatment may take awhile. It varies with all patients. Some may only need 6 months, while others may need 5 years, and others the rest of their life.

I am not from Maine but have heard 'black' flies up there carry lyme and coinfections

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