My Story

A long time ago I could not answer why GOD chose me to endure this path, but NOW I finally know..I feel in my heart and my soul that I am to help spread awareness to others. I have been told I have a gift when speaking and helping others. I now know that is what I am to do, to go out and tell my story of my experience with Lyme Disease to teach them. To get those to the right doctor and get the correct treatment they need before its too late.

♥Much love to all of you who have and are suffering this complex and disabling disease. My heart goes out to each and everyone of you. May GOD BLESS you with the strength & guidance to find what treatment and path you choose to release your pain and frustration. Don’t forget you are never alone in this journey♥

 

My name is Ali, and I have struggled with Lyme Disease for a very long time. I saw many, many doctors approx. 15 or so since age 11, I’m 31 now. I was diagnosed withmany things before leading up to my clinical diagnoses with Lyme. My main diagnoses from Doctors for a very long time was Chronic Migraines. Followed by that were many other things, IBS, Seizure’s, POTS Syndrome, Depression, Fibromyalgia, TMJ, Sinusitis, Tendinitis, the list goes on. As a child before getting ill I had a love for dance, people, and school. Lots of friends, very outgoing, and an extremely talkative child. That all changed then when the pain hit me like a rock in late summer while on vacation with family I got a severe migraine, nausea and dizziness. My mother’s first thought was a bad migraine due to the long history of them in our family. I spent 3-4 days in bed on vacation sick. By the time we got home I was complaining of a sore throat as well and had a low-grade fever. Almost 10 days went by and no change, my mother began to wonder that this was a bad flu. She called the doctor, I got checked out and was told it was something viral and to just wait it out. I did and before long I felt back to myself…or so I thought. By my mid year of 7th grade I had the severe headaches, stomach aches, anxiety, and a sense of restlessness and even fatigue at times. I began having extreme problems concentrating and understanding the curriculum. My grades were slipping too, I went from a honor roll student 3 yrs in a row to barely passing. Everyday It was getting harder and symptoms more severe. Some weeks were better than others, it just seemed strange. By 8th grade I began having the Migraines Chronically, not break at all and my depression was becoming more severe. After realizing the school nurse had become my best friend my Parents realized the best decision was to pull me out of school and get me home tutor. Soon after leaving school and still trying to figure out what was going on, my neurologist decided to admit me to the Germantown Hospital ’Migraine Center’ for observation and testing. I was there about 10 days, scared and very lonely at times. They ran litterly every test in the book, at age 12 I felt so alone that no one understood what was going on, there was never an answer. They put me on all types of medications, and my parents spoke with many specialists. I was told I was the youngest patient to be ever be admitted to that floor. They had me go to support group, though there was not much cooperation on my part I might add.  I will never forget that week, I felt so scared and confused and I hated being far from home. I missed my friends, family and school. Like any normal 12 yr old I had hoped these doctors would fix me and I’d be back to school enjoying my school activities, one of my favorites being a cheerleader! I was released from the Hospital and sent home with a bunch of scripts for medications, told to get bed rest, see a counselor to deal with all this. To try a form of meditation called biofeedback and find a physical activity that might help not only keep my strength up but raise my serotonin leval to help combat the migraines.

One Doctor, I’ll never forget, whom I had been seeing for about a year or so to treat my migraines. Pulled my Mom into her office when I was about 14, and as I sat in the waiting room told her she felt she was TOO involved in my life, encourging my illness, making me more depressed. In so many words summing it up that my Mom had the classic ‘Munchkins Housing’ Syndrome. To me, that was crazy!! My Mom and Dad were taking me anywhere, and everywhere to find out what was wrong with me and try to get me the treatment I needed to get better. Money had never been an issue in my family even when they didn’t have it, they just wanted me to have the life that most kids did at my age. 

Most of my time at this point was spent on the couch everyday, tired, in pain. Extremely weak and very lethargic at times. I was constantly sick with the flu, ear infections, strep, many sinus infections too.  My immune system was totally shot. I was on so many medications though it made it even harder to focus on my sessions with my tutor. I felt very alone, and angry with just about everyone in my life. I was loosing a lot of my school friends, just felt like no one understood. My doctor and parents at the time felt that any form of exercise would be good for me, mentally and physically as long as I could handle it. Laying on the couch everyday feeling sad and getting weaker surely wasn’t helping. Although, any kind of physical activity seemed nearly impossible to me to do I decided to try to go back to dancing again. Since age six I had always had a passion for dance and took many dance classes before becoming ill. It was an outlet, a hobby like most kids that I looked forward to every day after school. There were some weeks I would feel stronger and better than others, so my mom would take me to ballet lessons. My Dance Teachers were very supportive and looked out for me during class and did anything to help. Sometimes I would get to class and think I was alright, then half-way through class I felt too sick and would call my mom to pick me up. On those days I felt good enough to go to the dance studio, I was myself again, free from all the sadness and pain. For me dancing had always been thereputic for me. I’m not saying I didn’t pay for it later, there were days after a class or too where I’d pay for it in bed. Some how though, it always seemed worth it.

Around that same time I noticed a symptom that I had felt when I would take dance or even just walking upstairs to my room. I had complained about it before to my mom and doctor but just put mostly put it off as fatigue. At this point I told my mom it was worsening and described it as hurting to breathe, sharp chest pains. It was weird, my heart would race really fast even though I’d just be sitting there watching T.V. I’d feel so tired from it too.  My mom took me to my doctor, my primary physician he told my mom it just may be from being on so much medication at such a young age and the stress I had been going through being out of school and such. He said he’d wanted me to try a low dose of a  beta-blocker and see if that  helps. It covered up the situation, but didn’t exactly cure it. 

By 10th grade I started loosing a lot of weight very quickly. I never really had an appetite, I would pick at my food mostly due to the nausea. Sometimes I would just simply forget to eat. My stomach pain which they classified as IBS got increasingly worse. Then started to notice my knee and ankle pain I had had for quite sometime had become worse. My knees would swell up like baseballs and burn really bad. My ankles became so week I would sprain them so easily just by landing on my foot funny. None of my braces were relieving the pain and keeping up with ballet become so hard and extremely frustrating and sad for me. My parents decided to take me to an Orthopedic Doctor. I was told it could be ’Growing Pains’, maybe a bit of tendinitis from dancing, what they call dancer’s knee. He did an x-ray and saw nothing. Told me to take any over the counter inflammation pill and keep wearing my brace. I tried to keep my strength up just walking around the house and my mind off of the pain. I still took dance classes, but most of the time I ended up sitting on the side watching the girls dance from the pain. I went from being what my teacher called one of the Best Dancers to not being able to keep up with them at all.

Despite the hesitation from my Parents come every September I would try to back to school again with my friends. I was determined to get my life back even if it meant dealing with a migraine every day. My parents for the most part were concerned due to the idea of the let down of not making it through a whole year and having to go back to home tutoring. Plus I was taking much emotional abuse from classmates and lack of understanding from teachers and staff.  I would always go back each year and keep my head up and hope for the best. Some how my parents knew my body better than I did because I always ended up back home to tutoring. The longest I think I ever lasted was 3 months of school, and most of that time was spent in the nurses office. It was very frustrating, I just wanted to be a Normal  Teenager!!

Then in 1994 soon after we moved into our brand new house, not even a week of living there,I had a Grand-Mal Seizure. It happened shortly after I went downstairs to get my medicine for the night. That’s all I really remember, opening up the fridge to get a drink…then next thing I know I’m in a hospital bed a big bump on my head.  I was told by my Neurologist the next day after extensive testing that some people have a specific triggers that can set one off a seizure. It can be due to any form of stress amongst many other things. My stress, so they thought, was my wisdom teeth surgery I had just had in the Hospital, it possibly could of been just the stress of moving into a new house. They immediately told me I was not allowed to drive and were going to put me on an Anti-Seizure medication for two years. I was not a happy camper becuase at that time Ihad just received my drivers permit.

Soon after my Parents became even more worried, they insisted to Doctors that all these symptoms had to be coming from one thing, but of course they didn’t listen. I soon went from being 110 lbs to 139 lbs in only three months following my Grand-Mal Seizure. The doctors said it was from the seizure medicine, but that much weight in that amount of time seemed almost impossible. My parents started looking for more answers. Then as usual more things started happening. I was getting chronic Kidney infections. Ovarian Cysts popping up a lot that would have me in the ER almost on a monthly basis. My Menstrual Cycle became indescribably painful as well. My Gynocologist tried Birth Control to help minimize the pain from my Menstrual Cycle and the cysts, but that only exasperated my migraines.

For my family it became quite normal for me be visiting our local ER on a regular basis, and traveling all over the US to find out what was wrong with me, my body was litterly falling apart.  I did Graduate however, but not with my actual Class1996, nor my friends..I wasn’t able to walk with them to receive my degree, I was crushed. I was told I did not have enough credits with one of my class to graduate, yet they didn’t notify me and my Tutor of this until several weeks before Graduation. My school to say the least was not supportive. They fought my parents with attending school dances, even my senior prom. Told my parents to there face that technically I was not part of the High School because I wasn’t taking classes there, yet I probably worked my butt off even ten times more due to the fact that I was sick during mostof my lessons with my tutor. There was however one special teacher out of the many unsupportive staff who was upset because couldn’t remain taking my foreign language class. He told my parents was extremely gifted in German and would be willing to tutor me for free since the school was not willing to pay him.  It was people like him and my tutor of five years that made it a whole lot easier to endure, what I felt like discrimination for being ill. They both taught me strength and perseverance and to never give up on myself!

I wish I could tell you my story got better as time went on, but by age 21 I started feeling my pain spreading throughout my whole body, like an achy flu feeling on a daily basis. My pain would migrate from one body part to the next, every day would be different. I thought it may have been caused by a fall down the stairs I took at home recently. I was always extremely clumsy, constant bruises on my body. I had noticed my tolerance to heat & cold had started getting worse. I would feel and look extremely flushed at times. I started having severe and vivid nightmares and profuse sweating when sleeping, so bad my bed would be soaked and my hair drenched. I tried sleeping with a towel, but than I would just soak that too, nothing helped. My mom and I even took me to see Endocrinologist too wondering if I had a thyroid problem, tests were all negative…as usual.  

By this point in my life I had every test in the book over and over again, and everything was always came up negative.  I saw so many doctors, so many specialists. I was starting to give up and feeling suicidal. I felt my life was passing me by and I had had to give up so many things. At this point my doctors suggested counseling, to me that’s the treatment they suggest when they don’t know what else to do with you.

I Never did go away to college..I tried Community College, but couldn’t concentrate or even stay awake in class long enough to learn anything. I was so used to daily pain that if my parents asked me if I had pain, I actually had to think about it. It became ‘NORMAL’, scary as it may sound. I just accepted things.. this is my life, I might as well try to live with it as best as I can and look at the positive of things, it could always be worse.

In my mid 20’s I started looking into Alternative Medicine. I did some Acupuncture, Yoga, Water Aerobics, lots of physical therapy. The Acupuncture which I did for almost six years off and on definitely helped my kidney problems, my liver, and a lot of the fatigue I felt. The negative to it is I would feel some relief of body pain for a couple days or so, but then it would hit me hard again and I would be bed-ridden. It wasn’t until I started seeing an Internal Medicine Doctor who had a practice, a team of physicians who specialized in Alternative Treatments without the typical take a pill and go home, so to speak. Soon after seeing him and getting evaluated by a team of many doctors,  he had diagnosed me withFibromyalgia. I was 24 at the time of his diagnoses but he still had suspected something else was wrong. He was very concerned with the swelling of my joints, low-grade  fevers & sweating I was having. He tried everything over the course of the next 2 years. I had everything from weekly physical therapy, a nutritionist counselor working with me, acupuncture, chiropractic. It was a wondeful facility and a very refreshing experience for me. After my treatment he was still not completely satisfied, nor I. At this point he had tested me for everything else, Lupus, Rheumatoid Arthritis, etc. Though the one thing that NO ONE had ever tested me for was Lyme Disease.

The first test he did for me for Lyme came back abnormal, showing some Lyme bands on my Western Blot. The second came back Negative. He was not completely convinced that I did not have it since Western Blots can be inconclusive at times. He then referred me to another Doctor who was licensed in Internal Medicine and Rheumatoidlogy, but Specialized in Lyme Disease. Apparently he said if I had Lyme, she’d be the one to diagnose it. It was one of her passions in her practice due to her daughter and son both have had the disease.

I Wasn’t sure if I believed I could have it..I never had seen a tick nor rash. I was definitely never a woodsy girl, princess all the way! My family and i had definitely traveled a lot in areas that I might have come across ticks, but it seriously never crossed my or my parents mind. Its kind of funny too because I saw an Infectious Disease Doctor not long before him and he never even mentioned testing me for that. In fact he suggested, what I always hear depression…the typical diagnoses for a women with pain. The fact that my one test came back abnormal had my Mom and I very curious and anxious to see this doctor in NJ.

Well, I saw my Lyme Doctor, ‘My Angel’ I call her, for the first time 4 Years ago while Engaged to my Husband. By this time I was 27 yrs old. It wasn’t exactly the greatest of timings, planning my Wedding was enough of a stresser, but happy to finally know what was exactly wrong with me all these years. For awhile my blood work was coming up inconclusive. I had my urine tested, western blot, among and MRI, etc. I was having what they call abnormal blood work, False-Positives. I was feeling frustrated and still wondering if this doctor was for real. I mean, I had so many doctors giving me other diagnoses throughout my life, it was only natural to feel this way. Funny thing my well, Fiance at the time and my mother after speaking with her after my first couple appointments were convinced this is what I’ve had all along. 

Finally after 60 days of oral antibiotics not only did most of my symptoms start to disappear but my blood tests, and urine testing, was finally coming up accurate for Positive Results of Lyme and other Co-Infections. I was diagnosed with Late Stages of Lyme Disease, ‘Chronic’ which is the worst stage you can be in. At this stage it is already in all of your organs and the tissues of your body. I also was told I have (Co-Infections) Bartenella and Babesosis and Lyme Induced Fibromyalgia.

Originally, my Doctor wanted to put me on IV, but with planning the wedding and all I was so happy for the first time in my life and I figured at this point I’m in late stage whats a month or so to wait a little more. I didn’t want to endure having the treatment at that time hearing from others and her as well that it was not quite pleasant. I wanted to enjoy this time in my life with my Husband to be and my Family. She understood and said we’d start with Oral Antibiotics first and see how I am after my Wedding and see if she felt the need to start me on IV. Well, for the next 3 years she kept me on low doses of Antibiotics, inflammation pills, etc.  I definitely got sicker before better, which is normal weird as that may sound, its called Herxing. Its when the siphrocites (the icky spiral looking worms from the virus) start dying off in your body. It creates symptoms that at times can be unbearable. You get a good two weeks then a bad couple weeks, then so on.  At times I did get tired and a bit drained from the treatment but the main thing was I was becoming pain free. The positive to my treatment was that I was able to dance at my own Wedding and enjoy my planning it with my family. I even felt so good at my Wedding that went to the after party at a local bar with my friends to celebrate. I could hardly believe how great I felt, it was like a dream come true, I’ll never forget that wonderful weekend. I felt at that time I had everything I ever wanted.  My Husband and Friends told me at the beginning of our Engagement that if they’d have to wheel me around in a wheelchair on the dance floor or to the bar at my wedding, they would do it!

Feeling as good as I was something I never thought would of been possible after all this time. Don’t get me wrong I still had so mild symptoms from day to day, but for the first time in my life I was able to hold down a job, three part-time jobs in the year of 2006 and 2007!! I was able to take care of my house with my Husband, and be a wife like I always dreamed of. I was told by my LMD I was definitely going into somewhat of a remission. My blood work was looking great, my strength was ten times better. I even got asked by wonderful friend of mine to speak and telling my story at his school to his fellow Temple University Pharmaceutical Students and Professor. It was the most rewarding experience, and I have vowed to do more. To get the word out about this terrible disease. My last speaking event, a lot smaller than the last was this past March for a local Community Organization. It was completely surreal and this time I didn’t feel nervous, just really excited. It was amazing I had two Women come to me and tell they had both suffered Lyme disease. One lady who was quietly sitting there listening to me cried in the middle of my story. Its not my intention to scare people nor to make people cry, but to spread the word and make them try to understand that my case of Lyme is actually mild. There are so many others out there far worse than what I’ve been through. People need to be aware and do tick checks on themselves and children, it could be life saving!

*The best job I’ve had so far is  my Home Business with a Company called Market America. Now I help others feel better like the products did for myself. In fact my LLMD was so impressed by my results with the Vitamins that she refers other patients to my Website. It feels wonderful to know I can help others and make a difference in the Health Industry:-)

NOW…MY ROADBLOCK:
After 2 years of feeling human again, I started feeling sick this past December of ‘07…I had to officially quit my two jobs, as a dog walker and sales rep for Hallmark. (At least I am still able to have my home job.)  I was becoming completely disabled once again. I Found out I was Re-Bitten by a nasty tick, crazy I know but its very possible to happen again once your bit the first time. Has something to do with the scent your sweat glands give off in your body. My doctor ran a Brain-Spect and it showed signs of (Neurologic Lyme) Hypo Metabolic Activity in the right Basal Ganglia of my Brain. In other words I had signs of Inflammation called ’Encheplitis’ and some’Hypoperfusion’ showed as well. Which is very common in patients with Lyme. On the Positive, I can now file for Disability with these results from the Brain Spect, otherwise they’d just fight me on being covered. They don’t consider Lyme Chronic (hence ‘Insurance Companies’,CDC & the IDSA) I currently started IV treatment along with my Oral Antibiotics through a Hep-Lock at the end of April. I do my treatment everyday with the help of my mom. Its become a full-time job! My Mom and I then drive to NJ every Tuesday to get a new one Hep-Lock put in and blood work done. Its been a little over a month now, its quite draining for the both of us but were looking at this as a meaning to an end. IV antibiotic Therapy is the best because it can fight the siphrocites faster throughout your body. It hits the tissues and organs faster and deeper. I’ll be getting my pic-line in hopefully soon, we have been waiting for my Health Insurance to approve it. That way I can do my treatments here in PA and not have to travel to NJ. So hears to hoping!

Now…..its now a Waiting Game.

WHAT I’VE LEARNED:
I do not to take life for granted, I cherish every good day that I have. Obstacles that you or I may encounter in life will only make you stronger. My Family…well there are no words to how thankful I am to them, they all at one time have been a caretaker to me, a friend, or just a shoulder to cry on. My Mom is truly my GUARDIAN ANGEL and BEST FRIEND through it all, she never gave up on me! My Husband he is my ROCK.  I believe my Husband was brought to me from GOD above to help me smile again; to not only see the joys in life, but to see the beauty in me I could not see for myself; and to NEVER LET ME GIVE UP; to show me I am NOT my illness, my illness is just a part of my life;That I have a wonderful life ahead of me and a wonderful future with him as a family!