Thanks, still here but still in bed and crying. yes I was diagnosed with Lyme but not until after suffering 4 yrs with it. I was in and out of the hospital with mystery ailments, twice to see a physical therapist for weeks until insurance ran out, numerous dr's, tests and finally when I started blacking out I really freaked. I went for the first time to a neurologist and he said FM wish I was unfamilair with. I insisted on an EEG for my head because the headaches are so bad. Already have had CT's, MRI's x-rays head to toe and blood tests for many things. They thought I could have RSD but no one ever tested me if there is a test. It all started with me waking up one day and I had svere pain in my right side (torso), right hand, shoulder and neck. I couldn't
open my hand, it was like stuck closed or lift my arm. This lasted for about
four months but my hand problem was close to a year. No one could figure it out so I just lived with it. No one said maybe Lyme and I didn't think of it and when I did, my Dr said no it ca't me that so I let it go. about
four months prior to that incident, I woke up one day with a round red rash sorta thing on my toe and it got worse over a weeks time but I was leaving for vacation and just thought it was a spider bite and no big deal. It got very painful and a kid accidentally stepped on it one day, so it was a mess. After going in the salt water and wearig
open toe shoes it started to heal. I believe this was the tick bite. It looked exactly like the tick rash but I didn't know at the time. This happened in NJ where I know a lot of people get bit by ticks.
Over tme the pain in my arm turned into a pulling, tingling, needles feel in both arms and hands. My right shoulder and neck was severe pain all the time. No one could help me or figure it out and with work, I didn't have time to go to Dr's all the time. I lived a lone and bills to pay. Then I moved to SC with my boyfriend and things got worse, a lot worse. Finding a Dr here that is any good or cares is like finding a needle in a hay stack. My job changed and so did my insurance and not for the better. My symptoms became worse, especially the headaches. After about 1.5 yrs when I started blacking out, went to the nuerologist he said FM and that was it. He to this day keeps insisting FM is the cause of everything. Since, I have been to two different primary Dr's, two Rheumotologists, infecous disease Dr, hospital numerous time in severe pain, physical therapy again and of course the nuerologist. To much to say here what happened at each but they mostly all stink and don't care. None of them know anything about Lyme inclusing the infectouse disease Dr that totally dissmissed me. I only found out my test was positive because I freaked out one day in my primary Dr's office and said, give me a blood tests for everything and anything we both can think of. he didn't even say Lyme, I said add Lyme so he did. I knew it on my heart I had this and no one would listen. Of course it came back positive and he called me immediatly and said come in to get the antibiotics (doxy) for 30 days. This is after four yrs of getting bit and going through hell. I was and am so mad these dr's didn't listen. After 30 days I did feel a little better but it only lasted a few months, came back even worse. In the meantime kept blacking out, pain spreading, in bed, depressed etc...so started to see a therapist becaus I just wanted to die. She helps but after awhile you get sick of hearing yourself carry on about all this. Sure you all can relate. In the meantime at home, boyfriend tries to help but works out of state and I'm alone a lot. When he is here we have no fun, it's all about him catching up here and me being sick. I'm 46 and my shower is set up for someone 100. I can;t shower when he isn't here sometimes because I'm too scared I'll slip. My headaches are the worse, I go days with no TV, in bed isolated crying, taking meds and hoping someone would come in and kill me. I'm driving him crazy with paranoying, saying I want to die, complaining about pain etc...my mother is far, in PA and is so upset she can't help me. I have no one else but feel extreme guilt all the time that others have it worse and I should shut up. I feel guilt over everything, all the time. I cry so much my nose bleeds and I throw up. My memory is so bad I cant even give my phone number or if I do get out to a store I get lost even if it's only down the street. Sorry, I know this is all stuff most of you went through or are going through.
I talked to my Dr and he gave me a second round of doxy but it did nothing. I researched, read about Lyme and bought Under Our Skin. There are no Lyme Dr's near me that I can find. I considered going to one but I don't have the funds and it seems most don't take insurance. I called one and it was like $600 the first visit and then each visit after goes down but that doesn;t include, meds, tests, follow ups, travel expenses. I'm already a healthy eater and have been way before this all happened. I haven't eaten meat in 16 years, rarely eat fried food. In NJ there were a lot of organic store, health food stores near me to buy all kinds of things but where I moved to they have nothing. I still eat pretty healthy, in fact better than anyone I know so I think I'm good with that. I know exercise is helpful but can't move most of the time. Just typing this, I will be in worse pain because of it. I used to work for Whole Foods and know somewhat about homeopathic remedies and honestly everyone I've ever tried didn't work for me. I don't mean to sould negative but one thing I've learned is there is no one answer for everyone but I think someone else said that too. I try so hard to fix this and have been for a long time, it's getting worse. Finally, I asked my primary if he would be willing to put me on antibiotics for a longer time even though he goes by the CDC guidelines of the 30 day only. Thought he would say no but he said yes to six months of doxy but pill form only. He said he wouldn't do an IV and honestly that scares me to death anyway. I also have huge phobias that came out since all of this, that's another long story but needles totally feak me out. I sound like such a baby and here some the guily feelings. : ( everything I say, I feel like it sounds like a complainer or I'm just being a baby :( everyone tells me, why dont you do this or that but I have been. none of this stuff is free, I can;t drive half the time and the drs are 45 min.s away plus $50 to talk for two min., this feels so hopeless. One time I sat in the parking lot for 15 mins after an appointment crying hysterical because I couldn't drive home and all I could think is, I want to die and how can I do it w/o pain. my dogs are the only thing saving me. : ( ok, trying to calm down, very upset saying all of this. so tired of it repeating this story, I'm sorry. thanks again to everyone that posted, I will have to come back and reread, look into what I can...someone mentioend a daily journal. I used to write everything because I was getting mixed up withh all my meds forgetting what I took etc...plus I wanted to be able to tell drs how I was feeling each day. I can't hold a pen anymore for ore than a sentence so I started a blog, just for myself if anyne cares to read. I miss a lot of days but it's almost up to date. http://maryannmazz.wordpress.com/
Post Edited (Rapture55) : 10/18/2010 8:45:51 AM (GMT-6)