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 who have it 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 am 33 now. I was diagnosed with many 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,Vertigo, Dysautonomia, 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, tremors, anxiety, heart palpitations, 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 a 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 a 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 literally 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 favorite things was 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 level 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, encouraging 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 found a way. 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, 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, I couldn’t be the teenager I wanted so badly to be.

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 in a fetal position 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 therapeutic for me. I’m not saying I didn’t pay for it later, there were days after a class or two where I’d pay for it in bed or wear knee and ankle braces just to get me through. 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 had been a problem way back when I first got sick, just a bit of irregular palpitations when I did a physical activity. I never had said too much to my parents about it, not thinking it was a big deal. Now it 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. Still had the palpitations.

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, I even ended up in the ER a couple times. Then I 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 and fear 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 with Fibromyalgia. 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 too, my Fiancé (now husband) at the time and mom both agreed too after speaking with her at my first couple appointments that 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 bacteria) start dying off in your body creating toxins to be released. 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 my pain was getting better. 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!

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. I was becoming completely disabled once again. The doctor felt I may have been 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, could no longer avoid doing it anymore, 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 and husband. Its become a full-time job! My Mom and I then drive to NJ every Tuesday to get a new 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 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 more than a Mom but a FRIEND through it all, she has NEVER given up on me! My Dad, who is always there for a BIG HUG when I need one and who has worked his butt off every day so that I can get the best treatment possible. My Sister, not just a sister but a friend, she has always been there when I needed to vent, acted more like an older sister than a big sister always trying to PROTECT me from anything that would bring me sadness, and for sharing so many memories good and bad as sisters. My Husband, he is my ROCK, my best friend, making me laugh everyday. 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!

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62 Responses

  1. Hi Ali,
    My name is Rebecca. I am the girl you saw on the news last night. I have lyme disease. And I have POTS just like you. If you could please e-mail me, that would be wonderful. I have seizures also. I didnt catch it in the early stages. I have been severley sick. Please e-mail me. Thanks. Rebecca Or leave your e–mail

  2. Ali, i adore your courage and strength, by overcoming such great obstacles in your life.

    You have made a fantabulous website and i enjoyed my time here. You have a little something for everyone….tons of info and insight.

    As one of the admin/owners of The Lyme Cryme website, i am PROUD to stand with you and fight this battle….For TOGETHER WE WILL WIN!

    Please feel free to drop me a email, i would love to chat with you…

    Hugs*
    Dottie

  3. Your blog is amazing and informative.
    You know we’re holding hands as we navigate through this nightmarish Lyme battlefield.

    I love you lots!
    Janet

  4. Hi,

    I would like to thank you for the awareness you create by this blog.
    Best wishes

    RK

  5. Thank you for your example. I feel i have Lyme quite bad and want to know how to find a doctor who will treat it. My number is 267-638-8453. I am going through quite a few obsticles. I can call you back then so there’s no charge to you. Please advise if you can.Debbie

  6. Hi Ali,
    I feel very sorry for you… My best friend has cancer and I know how it feels for her…
    😦 I’m very very sorry

  7. Hi Ali,

    Please email me, I would really like to talk to you, I am having the same problem, except in Sept (I am 26 right now), an ER said I had Lyme finally then it came up negative, I also had Rocky Mountain Spotted come up in my blood tests, drastic weight loss, deficiencies in all of these things in my blood, and its getting so frustrating, I have been diagnosed with so much stuff starting a little over ten years ago, I go numb, slurred speech, I would like to speak with you more, I need to find a dr willing to “go to the distance” so to speak to fight this. They have misdiagnosed so much… If my email isnt published on here I will check back and see can you put your email if not. Thank you!

  8. Dear Ali,
    thank you for taking the time to share your story. Many folks will see themselves in it. Thankfully I received treatment by the best LLMD in the country on TBD Co-infections. if they go untreated, you can have all the IV you want (I never did any) and will never get better. Bartonella(s) and babesia – several forms are by far more deadly and harder to treat. I would offer you visit the site I listed and read some of the posted articles for free. Until you successfully treat those co-infections, you will continue I suspect to have relapse.

    here’s the good news.. am older than you… was bit at least 2x that I know of, went on to get married and have two successful pregnancies and children. They are alive and healthy – but unfortunately both got lyme living in none other than PA! Thankfully they too are functional having received adequate testing and treatment — after seeing DOZENS of doctors in PA who didn’t know what the heck they were doing and ignored what I now know to have been a positive WB on one child. I would still love to have a good sit down with THAT doctor who was so ignorant in Chester County, PA.

    Keep at it. If you quit you lose. It is worth the fight.
    Barbie

  9. I think it’s good that you see it in a positive light and that you’re reason for this is to spread awareness. I feel like that as well.

    Thanks for sharing your story. Feel better.

  10. Ali, et al,

    I like your mission and it seems very similar to mine. I have been ill for about 20 years and crippled with Lyme for the past 9 years. My story is listed under BLOG MASTER on
    http://WWW.LYMEHANDBOOK.COM

    Many of my fellow drippers (i.e., antibiotics) are now seeing a Russian doctor located near Danbury, CT and having great results. We all have been completely off drugs for most of last year with nothing but positive results. Boy does it feel good!

    The treatment is based on getting your blood circulating properly and healing your immune system. It may seem like voodoo, which is exactly what I thought. But, a friend dragged my ass to her and I have been grateful ever since.

    Being that there are so many chronic Lyme patients in this area, and she has had almost 100% success, she is very popular with those from Boston to the Carolinas.

    Compared to normal medical costs, she is quite inexpensive and there are no drugs involved.

    If anyone is interested, drop me a message.

    Best to all,
    Rob

    • Rob, need to know who the doctor is in Danbury CT. I’m very close to that location and having a tough time with my daughter who has lyme’s. She’s getting intravenous but she’s hit a wall….she’s hit a plateau so to speak. Can you help me? Thanks!

      • Marj,
        I highly recommend Maggie (203-266-4707 , Woodbury, CT). You can mention my name if need be.

        She was a Soviet doctor for over 20 years and treats dozen of Lyme patients now without any drugs.

        I know dozens of her patients, and they ALL have improved significantly. Including myself.

        Some were close to death. They owe her their life.

        All the best,
        Rob
        http://www.lymehandbook.com

      • Marj,
        LLDs relatively close to Danbury:

        Dr Phillips – Wilton, Ct
        Dr. Horowitz – Hyde Park, NY
        Dr. Loewenburg – Katonah, NY
        Dr. Cameron – Mt Kisco, NY

        Good luck,
        Rob

    • I am interested in the name of the Russian Doctor near Danbury, CT and what the protocol entails.

      Eric

      • Eric,

        Maggie earned her medical degree in Moscow and Tbilisi. She practiced in Georgia for over twenty years. When she cane to the States because of the war, she could not practice medicine here without an Ameran medical license. She does have a license to perform medical massages and provide intense herbal blood cleansing/detox teas. The combination has helped dozens of chronic Lyme patients in the area.

        I was in the fetal position when I began treatment. I am not 100% yet, but I am getting there. Others were much worse than I and are now near perfect thanks to Maggie.

        I suggest calling her (203) 266-4707. You won’t be sorry.

        All the best,
        Rob

    • Hi Rob!

      I am very interested to Hear more about this doctor. I am all about less medications. I have chronic lyme and am in a flare. Very frustrating and debilitating. Lmk when u can.

      Thanks jenny

    • Could you please forward the doctors name address contact either via email or phone or both. My daughter is 37 and has been suffering Lyme since 15. Thanks Paula

      • P,
        You can give Maggie a call at 203-266-4707. She is generally very busy with other Lyme patients, so if she doesn’t answer immediately, try again later.
        Rob

  11. Ali
    Like everyone else, thank you for sharing your story. I find it helpful to just hear that I am not alone. When I read the various posts, I feel like I am a newbie and have no right to post my story yet, but I am hoping if I share my feelings with others who understand, it may provide me with some relief. I am stage 2 lyme and on the IV drip bag for 2 weeks. I did the doxy and got no results except a worsening of symptoms. I have had evey text book symptom and luckily the positive test, which provided me the opportunity to get the medical treatment I need. I am reading a lot about this disease and I am concerned that “whatever symtoms I am left wtih after the antibiotics, is what I will have to live with…” as spoken to me by my infectious disease doc as well as on many sites I have visited. I am a mom of 3 young kids, I work 1 1/2 jobs and up until 2 weeks ago was training for a marathon. I CANNOT live my life like this for much longer. The fatigue and malaise are difficult ,with what was once a very active lifestyle. The joint pain is bearable but certainly nothing I want to endure for the rest of my life. The most concerning to me is the cognitive effects: foggy, forgetful and mood.
    I guess I am hoping that others at my stage of lyme disease have finished treatment and just feel like themselves again, because really that is all I want; to be me again

  12. Thank you Vicki for sharing your story! Hopefully you received my email. Best wishes to you with treatment!

  13. It’s so hard to explain to someone how Lyme disease feels. I got diagnosed my sr. year of college. I was in such advanced stages; my whole life was put on hold. I try to explain to people exactly what it is, and what it can do to the human body. But all I get in response is “Ugh so you got bit by a tick”? I just want to say LISTEN HERE MOTHER FUCKER. . . Do you know what it’s like to cry yourself to sleep every night because you’re in so much pain? What it’s like to try and go to the bathroom and have your legs give out when your half way there, just to army crawl and pull yourself up to the toilette? This topic is so frustrating, no MD. Will ever truly understand. I would know everyone in my family is one.

  14. Hi Ali
    can you please tell me what NJ Angel Dr you see.

    • Hi Kelly, I actually no longer see my llmd in NJ. I see a naturopathic LLMD in PA. The drive to NJ was too much for me when I was on IV treatment. I can give you the name of my current doctor but she has an eight month waiting list as we speak.

      • Hi. Can you share the name Of the pa ND?? I’m in Philly and I’m looking for someone. Thx!

      • Are you looking for a Neurologist or a Lyme Doctor? I’m assuming Neurologist since you said ND.

  15. I emailed you Kelly:)

  16. We are all hero’s in our struggles with Lyme Disease. It’s great that you could find a positive message through it all. I have chronic lyme disease and have been in treatment for 7 years. I am about 70% better and through it all, have drawn very close to my creator. That is my positive and I want to help bring awareness and encouragement to others who suffer with this illness. I have a “my journey” page on my new website http://www.lymediseasecureplease.com

    Check it out when you have time and energy and let me know what you think. I would appreciate it very much!

    Jennifer Mortensen

    • Jennifer, I love your site!! Great information for many! Did you consider doing a twitter page as well? I have found that very helpful for creating awareness. I love your attitude towards this illness and I wish you a lot of luck with your treatment!! Healing prayers to you!

      Ali

  17. Hi Ali! Thanks for checking out my site, I really appreciate it! Can you tell me more about a “twitter page”? I’m pretty new at all of this and stumbling my way through 😉 Nice to meet you!

    • Sure Jennifer! It’s pretty easy and straightforward, you sign up for a free account at http://www.twitter.com Name it whatever you like as a profile name, you write a brief description of who u are or just about anything, can put your blog link as well up. You can change your settings for privacy too, where if people want to follow your tweets they need your approval or like myself I make mine open to the public and even linked my account to my blog. You can post anything you want on twitter, article links, just an status update, and you can tag it by subject too or how your feeling. Then if someone does a search for that tag your tweet would pop up. For ex. say I just want to say how Im feeling, such as: Having a bad Lyme day today #frustrated #Lyme

      If someone searches for Lyme or frustrated my tweet would pop up, am I making any sense?? Let me know if you need more info. I can send you some helpful links on Twitter. If you have an IPhone or IPad they have twitter apps, let me know because I’ve researched them all and found my favorites:)

  18. Awesome Ali! Thank you so much for the helpful advice 😉 Sounds pretty simple, if my lyme brain will cooperate!!!

  19. I admire your strength after all you have been through and are still going through. I also have Lyme but not nearly as long as you have and I can tell you it is a miserable disease but I’m determined to beat it. Stay strong and thank you for sharing your story!

    Xo
    Brandi

    • Thank you so much Brandi, you are too sweet. I’m sorry to hear your in this same battle. It really has not been an easy road, but I’ve realized in the last year it has been all worth it. God works in mysterious ways and soon, in less than three weeks we will be having our first child via Surrogate:) It has been a long road and I know it won’t be easy as a Mom with Lyme, but I’m hoping with my family and husband by my side and with the treatment I’ve been getting from my LLMD I’ll be able to enjoy this time in my life. Many blessings and good health to you~Alison

  20. Hi there, i admire your strength and determination, please keep blogging! I know you have many resources helping you in your fight. I randomly found your blog when i was searching on migraines. I wanted to pass along someone I am using for mig. , who is currently working on Lyme treatments with a few others (I don’t know all the details) I believe she has had lyme herself, and she has a private practice and what i love is she is available to anyone using SKYPE (love technology!) She is located on the west coast. Her name is jenifer shapiro and her website is http://www.theempowermentcentre.com Just thought i would pass this along.

    • ..and her lyme site is this: http://www.curinglyme.com/

      • Rex thank you! I apprecaite that:) Jennifers name sounds very familiar. I will check it out. My migraines are much better since IV treatment. Unfortunetely its a genetic thing with me as well. My Mom, her brothers, Dad and Grandmother all had migraines. My moms were chronic and have been since she was 21. My Lyme Doctor is convinced my headaches may have not been as bad had I not had the lyme now too.

        Well thanks again for the info!!

  21. Wow great blog… thanks so much… Im glad I ran across your website. I have lyme too… I was diagnosed 3 months after I gave birth to my son. It was in remission but the preganancy brought it out… my mom has it too… I probably have had it since I was a baby. I did IV antibiotics too WOW tough tough tough… herxing stinks!!! I remember sitting there in a chair with my 5 month old baby boy puling on my IV and nobody would help me with my IV visits everyone thought I was crazy it is such a sad sad disease. But Im greatful for it because it has given me a greater empathy for sickness…and as odd as it seems I thank God for it as Ive learned a lot about life. Again thank you so much for your blog it really helped me to feel like Im not alone in all this. BTW Ive been doing epsom salt baths everyday (appx. 4-6 cups worth), daily prayer, and dry sauna AND I am happy to say that I am 98% cured– no nausea, headaches, fatigue, etc… only tolerable back and shoulder pain. Ive researched and researched it seems like infra red and epsom salt baths really help I know with me they changed my life– I can work 40 hrs/ week, take care of my now 2 year old son, and have fun AND not be tired!!! Blessings with you– Lyme stinks and I wish that people truely believed in chronic lyme… I know I do and this is coming from someone who thought that “sick people” were hypochondriates (sp?)– boy did I learn my lesson– until you have walked in another mans shoes I would never recommend judgeing them lol 😉 lots of love to you and prayers…

    • Emily its so nice to meet you! Sorry its under these circumstances:( It sounds like you’ve been through a lot yourself. That had to be so hard going through something like that with a newborn, I can not imagine. Yes the epsom salt baths and FIR Sauna, they are great! I do them now as well and they really help. I’m a lot better with the sauna then I am the baths since our home is a old in-law apartment where my grandparents used to live we currently dont have a bath. When i want to do one I have to go to my Mom’s, which really sucks but oh well. I really do feel the sauna helps my pain a great deal. Yes I too wish peole understood how seriousness this disease can be, people take their lives for granted when they walk in a park or even their own backyard. They should be taking precautions and most dont. Yeah Ive been there..being called a Hypochondriac, had a boyfriend years ago tell me that..so frustrating. Lots of prayers to you and your kids as well!! I hope you are still feeling better and that your children are ok. Was it passed to them during your pregnancy? You should have them tested if not. Just as a precaution. Well take care and thank you for checking out my blog! Many blessings to you and your family!

  22. Can I just say what a relief to find someone who actually knows what theyre talking about on the internet. You definitely know how to bring an issue to light and make it important. More people need to read this and understand this side of the story. I cant believe youre not more popular because you definitely have the gift.

  23. Please help spread the word! http://igg.me/p/161885?a=825896

  24. To anyone, I have lymes and it looks as I have had it for some years and didnt know. It has attack my brain and body system. This bug my have even cost me my marrage, because of out bursts and memory loss amung many other things it has done to me. My wife lover and best friend could not take it any more and sent me packing. I’m under treatment now and need a support group to help, I’m alone on this trip to get better but need help. I have melt downs that just show up and dont know why. I was living in Wisconsin with my wife & daughter and now I am back in the Ridley area and in need of a support group to help me get thru this recovery…. anyone know of a place close by Ridley Park PA.19078, dont want to drive to far of fear of getting lost as I have done so already… “Help”

    Thank You, Stephen

    • I am so sorry your wife left you. It is hard to get through alone. you need a support group!. I dont know of one in your area but the best forum is http://www.healingwell.com. you can choose to speak with people who have lyme disease. it is the most helpful site i have found in 16 years i have had lyme disease. also you may find comfort reading my story or the greiving process at my site.
      google me at helpinglyme.com. Also check your state for a Lyme Disease association. Most states have them. Stay strong Stephen, it does get better but not without the fight of your life. Good luck
      email me if you need to talk help@helpinglyme.com

  25. Thank You so very much, I have sent my wife some readings on Lyme Disease and she is reading them. Not sure what will happen but I’m not giving up the fight and I’m not giving up on my wife. I hope and pray that when this is all gone from me and I’m better she will tell me to come home. I pray and wait for that day to come it just cant come fast enough for me, I miss my Rock (Wife) so very much…

  26. Here is another chronic Lyme story and this one is inspirational. Short 3 minute video worth watching. Kamea came in a wheelchair and left running in 42 days.

    Please share or comment on the video if you like it:)

  27. Tremendous things here. I’m very happy to peer your article. Thank you a lot and I am looking forward to contact you. Will you please drop me a e-mail?

  28. Hey Ali,
    I am interested in the name of the PA doc that you see, and your opinions on them. I have been diagnosed with dysautonomia, fibro, CFS, etc., and recently was informed that Lyme is likely the culprit. I was hastily put on oral antibiotics, but since I already have heart/nervous system complications, I really want to get to a competent LLMD who treats aggressively and comprehensively. I’d really appreciate the doctor advice.

    Thanks,
    Ali S.

    • Hi Ali, so sorry I’m just getting this! Wow you sound a lot like how I was with Lyme. So sorry to hear your going through the same thing. I will email you her details by tomorrow if you still have interest in a PA Llmd. Mine does have about an 8 month waiting list at this point but I can tell you she is worth the wait.

      Alison

  29. Hi, the practitioner I know of can be contacted via curinglyme . com
    She is not an MD… but has worked at major hospitals on east and west coasts and specifically with lyme. Holistic approach. (note that I personally don’t have lyme , but have consulted for other med issues) Best of luck!!!

  30. I’m desperate for answers, my daughter has been from doctor to doctor with no answers, she woke up about two months ago with extreme head pain , neck pain, she’s so dizzy she can walk straight . we have done a ct mri and a spinal tap and all come back normal, after reading blogs I feel she has lyme, is there a way to find a doctor in Maine

    • Hi Kim, I’m so sorry to hear of what’s been going on with your daughter. I know how frustrating it can be. I will send you an email by tomorrow, Im sorry I had just received this notification of your comment I apologize. I may be able to find out for you through some contacts of mine. I’ll explain then.

      Alison

  31. Hey Ali,

    Can you also give me the name of the ND that you go to in PA. My email is statecc@aol.com

  32. Thanks for sharing your story. It’s crazy how so many of our stories are the same: the endless doctors visits, years and year of it… Hopefully you’re on the road to healing now.

  33. Hello,

    please post on your website book.

    The.Luciferian.Doctrine (i.e. The.Most.Important.Knowledge.You.would.Ever.Read.Implement.and.Live.up.to.Forever)

    It includes in #3.1/ #3,95B recipe that has been confirmed to annihilate Lyme disease in 100% (including official website information).
    / started to use it on myself and I’ve achieved astounding results with Lyme eradication, being basically 100% symptom-free.

    Thankse1

  34. hi Ali!
    This is abby:) don’t know if you remember me, but i met you and your incredible parents in the waiting room of Dr.Corson’s office a couple years ago. We talked a few times on the phone after that- i just remember how absolutely beautiful you and your entire family was- i’ll never forget it; you just emanated so much light, and courage, and this utterly unconditional empathy that was so striking- it was something i’d never felt from another person, either before or since meeting you guys, and i’ll always feel grateful for the day i got to meet you all.
    Anyhoo, just wanted to say that, and also a big congrats on your insanely popular and remarkably informative blog! It’s truly an inspiring accomplishment ali:) it gives me hope that maybe (one day…sooner rather than later) i could create something positive, or maybe something beautiful, from whatever precious scraps this illness has left-behind; maybe i could start to see the beauty in the broken-bits, and transform them to create something new and sparkling and whole again. Like you’ve done! (Yeah…please feel free to ignore that wincingly melodramatic and incoherent final thought.)
    Hope you and the fam are doing well ali, and again, congratulations!
    Abby allen:)
    P.s. Again, my apologies for that last sentence.

    • Oh my gosh Abby!! Of course I remember you! Always have wondered how’ve you been! We’re still friends on Facebook too you know😉 Thank you for saying that about my family!! I’m very blessed to have them in my corner! I always thought you were the sweetest too! I hope you are doing better and seeing progress. I was doing great until after my daughter had her 1st Birthday then relapsed. I’m now starting to see some progress and still seeing Dr. C, luckily when I relapsed I never have went back to how bad I was neurologically then. Sadly my daughter now has it too since birth😔 Which is crazy since we had a Surrogate carry her! Please call me anytime if you still have my number. Would love to catch up!! xo

  35. Hi Alison,
    Thank you so much for sharing you story and providing such great information. I have struggled since 2001, when I got sick that summer in Massachusetts. I lived in California and now Alabama, where this disease was unheard of and I was treated so terribly by doctors who told me that THERE WAS NOTHING WRONG WITH ME. I traveled to Massachusetts recently where my family is located. I am shocked at the number of people I have come into contact with who are somehow affected by Lyme. Every story I hear/read could be my own. I’ve found my people! I went to a family doc and he tested for all the things. Nothing except possible Celiacs. We had a very frank discussion and he said it very well could be Lyme but he did not have the knowledge or experience to diagnose and/or treat me. Now I need an LLMD desperately. I’ve read your symptom list, oh it’s so familiar. How can I find a good doctor and get treated? My brain fog is so bad I can’t think anymore. I’m having mobility issues as well (amongst many other symptoms, too many to list). I don’t know where to start. I need to get better or die has been my mantra.
    Thank you again for your story and information!!!

  36. Hi-I’m really sooey aboyt everything you have had to endure-we are only part way. My daughter started out with mild traumatic head trauma along with a number of other problems, unril she was diagnosed with Anaplasmic Lyme lately. Seems it has been in her system for a year or so. Been bedbound for 5 years, totally missed high school-still trying to finush 2 years late. We have an appt wirh Ms. Meshki at the end if rhe month. Is there anything we can do to prepare my daughter or do anything that would help before we see her? If yoy can’t help, I totally understand….Lisa Klick

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