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Alyssa – Rhinebeck, NY -     I have sat down and started typing this many times but usually end up deleting after the first few sentences. I have a hard time opening up and sharing my story…so, please, be kind if I make a few mistakes. I am 35 and I have Lyme.

I always have known something was a bit off. Through my twenties I struggled with many emotional difficulties..meaning my emotions were a bit all over the place. I figured I was just young and had always been told I was over-emotional and too sensitive. I drank too much at times because I couldn’t keep my head clear…I did things that never settled well with me-seemed out of character-but I couldn’t remember who I was exactly. I slowly was losing touch with me. In my late twenties the migraines began. These blinding, pulsating migraines…so I started taking pills to help with the pain. The allergy problems started to creep in….so they gave me more pills for that. There was a bad bought of knee pain…so I was sent to the orthopedist. They couldn’t find anything so gave me some steroids and suggested exploratory surgery. I declined…..it finally went away. My knees would grind when I walked up the stairs, I would get tired after putting in too many work hours. I figured I was getting older…I just was slowing down…at 29.

At 31, things started happening fast. There were days I would cry…for no reason what-so-ever. I called the doctor and asked if my tear ducts could be broken….she laughed and said I was suffering from depression. After repeated attempts to explain I was not depressed, that something was wrong, she handed me a script for an anti-depressent. I didn’t take that. I went on a date and thought to myself, “I am all tingly and dizzy….I must really like this guy”. We went out a few more times….One night after a drink I was walking down the path and my legs crumpled beneath me. I shrugged it off thinking maybe I had just tripped on something. The allergies were getting worse. The doctor visits more frequent. I was coming apart at the seams and my doctor wouldn’t listen. My mother knew something was wrong.

Then the petite seizures started. I didn’t fall to the floor and shake….no….that would have been recognizable. I would get this strange sensation through my body and the world would start going gray. My hands would tremble and I wouldn’t be able to speak. I could hear people calling my name but I couldn’t respond. I would come out of it and gasp for air and heave giant sobs begging my mother to help me. She went with me to the doctors….again…are you depressed? Pregnant perhaps? Mom stepped in and they refered me to a neurologist. In the mean time….I was losing my strength. I needed my mother to help me walk to the car, my right leg was dragging, my hands were curled in fists that I couldn’t open. My vision was declining daily, I was hunched and unable to sit up, I had sharp electrical pains shooting down my legs. The simplest tasks of washing my hair or pouring a drink were unmanageable. I had difficulty chewing and swallowing my food-to the point that sometimes I would have to take the food back out of my mouth so I wouldn’t choke. My body was shutting down.
My neurologist order an
MRI and a spinal tap-ASAP! Someone finally was taking this seriously. He recoginzed that my slurred speech , gray skin tone, and extreme muscle weakness was a problem. I slowly and painfully got through the test. The nerves along my spine had swelled out around my spinal column…making my Spinal Tap dangerous and painful. He called within 2 hours of the Tap…I needed to come back to his office right away. The MRI was in too. The MRI showed multiple white spots on my brain and my Cerebral Spinal Fluid had a very high white cell count. The next day my life was changed forever….I was diagnosed with Late Stage Central Nervous System Lyme with Brain Infection (Meningits/Encephalytis). I was relieved to have an answer and my doctor was afraid for my life. There was nothing humorous when I said I feel my body dying….it was.

I was then referred to an Infectious Disease doctor…I was told he was very good, “Head of the hospital”. H e saw me right away, took one look at me and replied “There is no way Lyme can make you this sick. We need to test for HIV and various other diseases.” The blood was drawn, my IV was started, round the clock care was decided upon. Keep me home and comfortable with my family. The blood tests came back….and wouldn’t you know. Clean as a whistle. The good doctor shrugged, said one month of IV antibiotics will cure me and that I would just be sick for a few years. There was nothing they could do.

We found my LLMD days later. I spent 2 ½ years being treated for Lyme, Bartonella, Babesia, and Ehrichliosis. It has been a long, torturous journey….and I do believe that hell lives right here on earth with us.

Today, I have been antibiotic free for 6 months. I still get sick. I still have some funky days. I have my life though….and I have found new friends to replace the ones that walked away from me. I have my family, my sense of humor…I can walk, talk and work from home. I still have to pace myself but I am working on that. I go to Physical Therapy for full body reconditioning…and I am getting stronger. I talk to a therapist who gently guides me away from my fear of death and illness. Who helps me understand that I will not be forever broken…that I will get to live and maybe even love again. I am learning to forgive myself and my body.

Special Thanks to my dream team: Mom, Wynn, Dr. Bock, my IV nurses, my massage therapist, Toni, Dr. Ng, my girl Cindy….and a bunch of others who helped make a miracle happen!

Chris – Mamaroneck, NY  -     Nearly 2 years ago I was on spring break having the time of my life. Was partying quite hard as most college young adults do. I remember very vividly when my first symptoms started to manifest. It was the last night of our stay and we had just started out on our adventure towards debauchery. We finally had made it to the club. One of my buddy's was lagging behind so I told the rest of the people I was with to go ahead, that I would catch up with them while waited for my friend. After some time, I was informed that he wouldn't be joining us so I went ahead with my plans. I attempted to recover the group of friends that had gone ahead without me. Mind you the club was tremendous in size and could fit an excess of over 10 thousand people. Well while frantically looking for my friends I became suddenly extremely lightheaded, light/noise sensitive and thought I was going to collapse at any moment. I was now even more panic stricken and needed to find my friends. I tried to elicit all the energy left in my mind and body to find my friends. Finally I had located one of my friends and implored him to leave with me. This way if I was going to faint in this strange environment, I at least wouldn’t be alone. We then left the club and decided it was best to stop at a cafe to get me water. Maybe I was just extremely dehydrated? Well much to my dismay this didn't help in the slightest degree. We finally made it back to the hotel, which seemed like an eternity to get to. At least this was a refuge and a safe haven from the all impurities outside. I tried to sleep before we had to catch a flight back home in the morning but I had no such luck. Then the notorious preamble to lyme started. Suddenly I had flu like symptoms where I was freezing yet sweating profusely all at the same time.

Morning came as I stumbled my cinderblocks I now had for legs through the airport while trying to maintain mental vigor and not fall. I finally made it back to my college and went right to the doctors. They tested me and nothing serious came back. They gave me some antibiotics and sent me on my way. For the next week I had a really arduous bout with insomnia and felt as though I was emitting out a gallon of sweat from my body each night. My sheets were completely drenched. I managed to muster up enough energy to get to class but was totally in cloud 9 and disconnected. A week went by and the night sweats started to subside but I still couldn't sleep and was extremely fatigued. I was reiterating to my mother what I had been experiencing. She had talked to a doctor who insisted that I go for walks in order to get vital energy from the sun. After a few weeks this started to work and the lightheaded sensations sleep deprivation and fatigue started to diminish. I finally thought I had weathered the storm whatever it had been.

I guess I spoke to soon and was fine for 3 months, never felt any residual effects from that incident. I had taken a job down in Maryland where I was very over worked; working 6 sometimes 7 days a week with a minimum of 75 hours a week. It was rigorous and my body was starting to send indications that I was starting to get worn down. I didn't want to listen at first being bull headed as I am and tried to get acclimated to this lifestyle the best I could. After a while I realized I just couldn't endure anymore. So I quit and tried to live a mundane life for the next 2 weeks. I decided that I needed to move back to NY to be closer to my family. The last night before I returned home to NY I started to become real lightheaded again and that night my bed was drenched in sweat yet again. I thought, great here we go again!

I finally made it home and didn't have any more night sweats but I was beyond lightheaded on a daily basis now. Didn't know what the hell was going on to say the least. I simply just tried to ignore these signs and thought it was sinus pressure induced or something. Well this went on for about a month and the worst part was I had just started a really promising job. It was a chef at a highly distinguished catering company. From there sh*t hit the fan and took a turn for the worst. It was Halloween 2008 and I was working over one of the big tilt skillets at work, when I suddenly lost my legs and had to sit down for a minute. I managed to regain composure and make it to the bathroom, trying to be inconspicuous the whole time. I had too much pride to let anyone know what has going on. I tried putting water on my face, taking deep breaths and drinking lots of water. I had managed to convince myself that I would get through this. So I continued doing my job while leaning my body up against every table or object I could; in order to keep stable. Somehow by the grace of God I made it through the day without suspicion from anyone. I drove home that night and almost went right off the road. The light from oncoming traffic was too agonizing and I couldn't stay in my lane. The sensible thing to do should have been to pull over and call someone to get me, but at the point I was compelled just to make it home as soon as possible. I finally made it home and hugged my mom harder than I ever had before. I told her what had just transpired then proceeded to break down in tears. My courage was totally reduced to pieces and I had no clue what was going on. Now if things couldn't get any worse I felt all the symptoms daily now coupled with massive head pressure and migraines. People started to become aware that things were not right. I became sluggish and normal tasks looked very problematic for me. Luckily the catering season was about to come to an end for a yearly 2 month winter hiatus. I managed to escape the season relatively unharmed other than a thumb cut. My insurance finally had kicked in and now I could devote the proper time to find a prognosis while on break..or so I thought!

A month into the break all my symptoms seemed to exacerbate and I could barely walk. I went through the whole convoluted process of seeing doctor after doctor, specialist after specialist who each had their own words of wisdom and take on the matter. I convinced one of them to treat me for lyme even though my test had come back negative. I took the 3 weeks of doxy and it did nothing but make things worse. I even tried acupuncture to see if any of this was stress induced. Big no no for us with lyme!!..Your veins are highly sensitive to have a myriad of needles stuck in you.

Anyhow, last January on my 23rd birthday I checked into the hospital suggested by my neurologist to run a battery of tests on me. I had
MRI's, CAT scans, Spinal tap, HIV, AIDS test and saw an infectious disease specialist. Everything came back stellar except for an elevated white blood cell count. They released me from the hospital told me I had migraine issues and prescribed me meds for them. They suggested I see a balance specialist next. So there I went where I had a balance test done. It came back with slight damage in my left ear but was at the marginal level to have any impact. The specialists said I had a vestibular problem and would need balance therapy. So I went along with it and went for balance therapy 3 times a week. Each time I went my vertigo would just increase gradually and the therapist was very perplexed that I hadn't shown any improvements. I decided to go seek a second opinion at the Eye and Ear Infirmary in NYC; one of the best. I took another vestibular test and various others. This time nothing came back at all. I went to the head of the department who was well renowned for making “miracles” happen with his patients. He treated me for a solid 4 months and once again no substantial gains. He, a very confident man now was also baffled and told me he was deeply sorry that he could do nothing for me.

Now I was near the end of rope, didn't know where to turn to and deteriorating rapidly. I had now completely abandoned the life I once loved and cherished so dearly. I couldn't move out of bed and trying to maintain simple dialog with someone now seemed next to impossible. I began to take on a very tumultuous demeanor and found my emotional threshold was on a very short line. This is when all the neurological factors began to come into play. The brain fog, poor concentration, poor memory, shaking, light sensitivity, anxiety, head tremor, blurred vision, heart palpitations, dyslexic indications and total problems with sensory integration.

Mid September 2009 is where I finally stumbled upon the serendipity I had been looking for. A friend of the family got wind of someone who has been in remission from Lyme disease for nearly 8 years. She was informed about what my symptoms entailed and urgently told me that I should go see her LLMD that her case sounded and awful lot like mine. So I booked my first appointment with an LLMD in Mount kisco, NY. I went into the office wrote down my symptoms and took blood. The doctor immediately put me on Amoxicillin and was convinced I had lyme. My blood work returned and I received an equivocal negative result once again. The doctor this time was not discouraged by this and stated that this frequently happens to about 50% of patients due to inaccurate tests and such. He said it’s often referred to as a false negative. The only concrete evidence was that my white blood cell count was elevated substantially and he calls these lyme marker indicators. So as of now he is basing my case on the literature and not the tenuous tests and knowledge that surrounds this dreadful disease.

The oral prescriptions I was on for 2 months did virtually nothing for me so now I am on the big dog "Rocephin IV" coupled with Zithromax. The first 2 months I was starting to make some head way. Suppressions in fatigue, dizziness, migraines, heart palps, brain fog, concentration, blurred vision and so on. Then I started to herx real badly around week 10. Now all these symptoms returned full fledged if not worsened and now new symptoms began to emerge. Now companioned with the already horrendous symptoms, I started to feel excruciating pains throughout my body and became intermittently numb throughout the course of the day. The doctor says this is a telltale sign of good things to come and I trust him implicitly. He has done wonders for many and I confide in him immensely. This is now my 14th week of treatment and am still in the abyss of a herx.

I am now 9 months in on this merciless battle and have just switched LLMD’s and am now on a very compressive protocol. I re-took my lab work and this time sent it through Igenex Labs. I finally after nearly 2 years of searching for some peace of mind received a strong positive Western Blot Lyme test which is CDC positive through the State of NY. My blood work also showed that I have secondary infections which are accompanied by a tick bite as well. I am positive for Epstein Bar Virus, Mycoplasma and HHV-6. I also have low levels of exposure to Q-Fever but my doctor believes the levels are so low that it isn’t something to be concerned with just yet. I am still tentative as to where and when I had contracted Lyme Disease. There are 4 different scenarios that could have been the case. The longest would go back about 6 years and the least amount of time being 2 years. It is also very common for the disease to stay in a quiescent stage for a long time. This could explain why it took so long for my symptoms to manifest in the first place.

So yes my plight continues as I desperately try to make sense of this all. However I have seen some progress made. I was bed bound for months and could barely pull myself together to get to the bathroom nor hold myself up long enough to take a shower. These days I am still facing a good amount of ailments that still make me incapacitated and home bound. But now I am able to do small tasks as long as they are limited and can never be sequential. Living a life with a chronic illness really puts things into perspective for you. It makes you appreciate the things you once took for granted and of course your health being of paramount importance. The compulsory confinement is not something easy to come to terms with for anyone, none the less being a young adult. I never in a million years would have conceived a simple task like walking your dog to your front yard would be so grueling, or holding a conversation with your best friends who you have known for years would be something you would dread doing, or simply running an errand into a store would be something I no longer could bear because my brain does not have the capacity to deal with environmental stimuli. This disease is one of the most misunderstood and distorted diseases and is becoming a pandemic. It really strips you have your identity and personal sense of self. The journey back to health is a long haul, costly, filled with affliction, adversity and is one of the toughest uphill battles one will probably ever encounter.

I know this is going to be a massive hurdle and is going to be a trial by fire in all essence of the phrase. But I have to have credence I will see the dawn of a new day and regain control of my life. The sense of solidarity in the lyme community has lifted my spirits when I am in total despair. So as a testament to myself, family, and supporters I will put forth a valiant effort and make sure when I see this through that those who are still suffering or have just started their journey towards health find the courage and support they so long for. Although difficult to deal with all the slander, scrutiny, and lack of credibility surrounding this disease we all have a purpose here. And that is we will set the stage as we are the pioneers for this disease. Because of our integral part, there subsequently will be a voice for those in the future and hopefully a diagnosis before it becomes incorrigible. Stay strong everyone and carry on!