My LONG Lyme diseas story

Ok I have "chronic" lyme disease this means my Lyme disease went undiagnoised for over 7 months and even after treatment I have several symtoms left. My very first symptom with Lyme disease that I remember was my left thumb twitching non stop for about 30 days straight, twithcing in my calves and my right toe feeling like it was pushing down. Now to back up for a minute at this time I was 26 I had just had my second baby 6 months prior, I found out I had gallstones and was pregnant the same day and I went 4 months living on beef broth, gadurade and chemo therapy strength nausea meds until they could remove my gallbladder during my pregnancy with a lower chance of lossing my daughter. Two weeks to the day after Allies birth I became sick all over agian with a severe uterine infection which required a d&c and LARGE doses of IV abx. I also develped a staph infection in the hospital which had to be addressed. 4 days after getting out of the hospital we had to be in VA from NC for my husbands job interview two days into the trip I became sick and back into the hospital which with stomach pain, nausea, severe hot flashes(which lasted 5 months) to find out after being scoped I had severe gastritis which I was told was from all the vomiting before taking out my gallbladder and the abx I was given for the uterine infection(and I was give two strong IV abx while in the hospital while trying to find what the problem was this time). Then a few weeks later after making the final move to VA I developed chronic bacteria vaginitis which I had never heard of in my life. They had me on large doses of flaygl and suppository abx and I wasnt getting better, after a few weeks on flaygl I became suicidal I called the pharmisist and asked if this was a side effect I was assured it was not. I asked my mother to take me to the E.R so i could get some help I was scared at this point and figured maybe I was suffering post partum. After talking to a counseler I ended up coming home, which is really hard to talk them out of keeping you when you come in talking about hurting youself but my mother assured them she would take me to see someone the next day. I came home at my wits end at what was happeing to me. My doctor who I trusted kept telling me to take the flaygl and it would eventually clear up. It wasnt!!!! 6 weeks in and NO IMPROVMENT, it hurt to walk I was so raw I was bleeding I was still have extreme hot flashes to the point I couldnt think I was still having thoughts of hurting myself. I had quit smoking when I got pregnant with Allie but at this point I walked out back grabed my mothers marlboro mediums and lit up and while I smoked I prayed and screamed and cryed. Here I had this beautiful new baby that I was too sick most of the time to take care of and Jake who was 3 who I was trying as hard as I could to participate but it was really hard. One night I got on google and googled side effects flaygl forum and BAM! there is was all these people saying flaygl made them suicidal. I stoped taking it that night and with in a week that feeling was gone. But I was still left with the BV and no answer from my doctors back to google and I found a woman who wrote in a forum about rockwell nutrtion and there BV protocol. I clicked and read it over...probiotic what the heck is that and it explained BV in a way that I understood plus I was desperate at this point. At that point and reading that all the abx has killed all the good bacteria and the bad had taken over and I needed to put the good bacteria back. Well it worked within 3 days on the protocol I had relief and with in 3 months it was completly gone and has never come back. This was my first saving grace with natural treatment. I was back to feeling ok outside in my VA yard playing in the grass with my kids trying to enjoy every minute of feeling better. Seeing the deer come right through my yard unknowing what they brought with them. I never had a tick attached but one night getting in the shower I saw this bite on my right thigh and asked my husband what the hell bit me but im not sure if it was a bullseye I didnt pay much attention. I never had flu symptoms that I recall it all started with a twitch. I went to several doctors including a neurologist, he never did any tests just said stress. I agreed to the stress part but I still felt it was something more and soon after this about a month later I started having minor heart palpitations, back to the doctor ran ekg and eco and there were some minor finding I was put on topril which I only took for 3 days due to the extreme fatigue I had to stop, I had been excepted into the sonogram program at Winchester Medical and was so excited. I chucked up everything to stress and planned on having a great year, the day before I was to start school I went to bed on the couch and woke up vibrating, my heart was pounding so fast and I hadnt had caffiene since I was 16. I was scared and back to the E.R. My heart rate was over 200 by the time I got there they gave me some meds and sent me home and said it was stress! Welllll from that day on my heart rate was normal sitting the second I would put my feet on the ground and just to stand my heart rate would go to 160 and as I would walk it would go up to around 200 with in 5-10 seconds and wouldnt come down if I was up not to mention I was completly out of breath. and scared out of my mind. My family doctor agian called it stress and put me on atentolol but the cardiologist in Winchester couldnt get me in for 6 MONTHS!!! I couldnt believe this my mother and husband decided I should go to Clevland heart clinic and I had an apt in 3 days. They did a few tests and said I either had POTS or IST but would need a tilt talbe to determine. So i started reading about these both were automic nervous system dysfunction and both completly debilitating. I was a mess at this point looking at my children imagining how would i even take them trick or treating if I couldnt even make them a meal without being out of breath. I about lost hope but I knew in my heart these new symptoms were from something I read about IST and POTS and the answers I was finding did not offer me comfort. The most extreme being heart ablation and sometimes the need for a pacemaker but I had come to live with this idea if it would improve my current situation. The doctor that couldnt get me in for 6 months who had treated both of my grandparents before they passed and knew our family agreed to do the tilt table before seeing me and let me tell you this was the wierdest medical procedure I have ever experienced. they put you on a table and tilt you to 70 degrees and monitor your heart rate and blood pressure and for some reason at this angle your brain and mouth/body dont communicate and I was like that for 45 minutes. I would think something but it wouldnt come out of my mouth correctly it was so strange and your straped to the table incase you pass out. I did not! I was diagnoised with IST (innapropriate sinus tachycardia) told to take my atenolol and have follow ups for EKGs and ecocardiagrams. NO! Im not going to live like this Im not ok with this answer. The atenolol didnt make a difference in my heart rate and the palpitations were constant and the worse part of the IST. I was on a forum, the only one at the time I think and everyones story was so sad there werent any stories of anyone getting better just ablations and pace makers and illness. I did make some friends on there that atleast I had other people know what I was going through and I found comfort in this. I ended up finding a doctor through this forum a pediactric cardiologist who also saw adults with IST/POTS from fairfax that came to Winchester on Fridays and he was positive and upbeat and listened and was open to my research without judgment. I owe alot to him if nothing else but being different then all the other docotors I had seen. I started to look at my history in trying to find out what was causing my heart and twitching issues I had mono as a kid, I grew up on a military base and was given every vaccination ever to come through there. I was given accutane for acne as a teenager plus years and years of antibiotics. And most of my life as far back as I could remember I never had any energy, I was always tierd and always had this thought in my head what is wrong with me. I started researching chronic illness trying to find my symptoms to match with something that was treatable. One night I came across this article and a line in this article has saved me time and time agian. "The more chronicly ill people I see, the bigger my organic garden gets." ORGANIC? what? food could be a part in this. Well I read somemore and starting the next day if it wasnt organic it didnt go in my mouth. All my chips were on the table. Well with in a month my heart condtition was 90% improved, I came down to 25 mg of atenolol and my doctor was impressed. He also said if this improved with diet then it is secondary to soemthing else and not true IST. I couldnt have been happier to hear that and now I had to set out to find out the cause. With my new found "health" persay I did take my kids trick or treating and walked every day I still wore my heart monitor watch, I wasnt ready to give it up yet and the beeping of my heart rate being under 100 was great comfort although im sure annoying to everyone else. I started going to the gym and doing hard core cardio (bad idea!) I was so egar to get over this and move on and felt so greatful to have this gone and I did too much and new symptoms came on very quickly and once they started it was a downward spiral. Ringing in my ears, body jerking, headaches, floaters in my eyes,body pain to the point it hurt to get up, most severe pain in my thighs, really bad memory loss to the point where id walk into a room and forget what I was doing there, fatigue, pain in my lymph nodes in my chest, wierd rashes, nausea, and other wierd symptoms like raynauds for two weeks and then gone but every day it was different and scary and it would come and then go I never knew what was coming. I went to the doctor a new one who was supposed to be good. I explained my symptoms and he said it sounded like MS but they would run some tests and I needed and MRI. They did tons of blood work and I read about MS, and Lupus and RA trying to prepare myself for the outcome and the worst. My MRI was 3 days before christmas. I went back in and he said Mrs. Wagoner you are a healthy 26 year old woman you either have fibromyalgia or this is in your head and you need to seek psychological help. You want to talk about being pissed off and relieved at the same time! I went home and googled and googled and there it was LYME DISEASE, I had come across it several times never reading it becuase Lyme disease was something a dog got not humans. I cried as I read symptom after symptom including the IST and I was like ok great how do I treat this son of a bitch then I learned the word LLMD and when trying to find one found out they dont take insurance. $$$$ Money out of pocket and alot of it. I found a doctor they took tons of tests but said yes this sounds like Lyme and started me on doxy right away. When the blood work came back it showed I had borellia, bartonella, rockey mountain spoted fever, elichea,riskettia , mycoplasma, activ ebv and hhv-6 and hypercoloulation(most done through IGENEX). With in 30 days I met my friend the HERX, which is die off of the bacteria when you are killing and they release toxins into your body. I was not prepared for this, there were times I had so many things going on I thought there is no way im going to wake up tomorrow but I always did. I started seeking out natural treatment, that saying that lead me to organic food which helped my heart condition and the experience i had with the probiotics had let me know there was another way. The docotor I was seeing wanted me on all these perscription meds, antivirals, coumadin (for hypercologulation) and the side effects looked horrible and I declined I did three months of doxy with other natural supplements. Went off doxy went on a cruise for my dad to get married stayed on all natural and some homeopathic and dramatically improved. I starting seeing a naturalpathic md and the only think i was taking perscription was the occasionaly valum. I was still herxing but I had gotten used to it if thats possible and finally came to a point where the herxing was so minor I didnt notice it. Natural treatment was NOT cheap by any means but it was getting me better. My husband took a pay cut due to the economy and we ended up filing bankruptcy after a year of my medical issues and everything being out of pocket. My husband also has lyme disease but he had minor body pain not neurological like mine was. We ended up moving to Culpeper the town he worked in and let our house go. We couldnt maintain our $1585 mortgage anymore and we had to choose what would work best for our family, I feel even though hard we made the right decision. After moving here last march we decided to go vegetarian which the desire and plan to go raw food when we felt ready. I truley believe this will take me the rest of the way to healing my body from this illness. I am now on most days anywhere from 75-99% although I feel Ive always ran well below my full potential most of my life lyme disease just keeps it interesting. these are the symptoms I have left from lyme disease....twitching here and there in my hands and feet, occasional fatigue, occasional rash, pain in my thighs, alot of lyme node pain in my chest and behind my legs and still sometimes get a new wierd symptom, like ive developed cystits which is now under control aswell as a recent blood clot in my leg. As bad as these sound they are nothing compared to the hell of having full blown Lyme disease and atleast I am now fuctional, as fuctional as I can be. I get up everyday with a positive attitude, love in my heart and I do the best that I can do everyday and thats all anyone can ask for.