VIRGINIA BEACH, Va. (WVEC) -- The following is a personal account of how Lyme Disease has affected Ozlem Jones and her family in Virginia Beach.
Ozlem is using her pain and turning it into a positive to educate others about the disease.
She's one of six mothers across the country who started the #lymediseasechallenge on social media -- a campaign that spread like wildfire, raising awareness around the world.
They say not many of us know about Lyme Disease, even in the medical community.
Here is the letter Mrs. Jones sent to 13News Now and Making Your Mark:
My name is Ozlem Jones. I am a 34 year old mother, wife and business woman. I did not know what Lyme disease was up until January of 2013. Although it turns out I've had it for 9 years. I was bit by a tick during a trip to Tennessee.Both my husband and I remember the specific moment I was bit. At the time I had no idea a tiny tick can carry so many illnesses. During our one week stay there, I've had many symptoms. I felt fatigued, sore and nauseated, however I didn't get a bull's eye rash. Since I was not aware that ticks carried tick borne illnesses, I thought maybe I was pregnant. When the test result came back negative. I thought maybe it was the weather change that effected me. If I only knew, what I know now.
Over the years I accumulated what seemed to be unrelated problems. If you look at me from out side, you would not guess how much pain I am in everyday. Chronic pain became part of my life. I experienced severe headaches, insomnia or excessive sleep, chronic fatigue, wide spread pain, low comprehension levels, confusion, double vision, tremors, skin crawling, difficulty thinking/concentrating, disorientation, forgetfulness, difficulty writing meaningful sentences or spelling words correctly, heavy nausea,heart palpation, tingling/numbness in the legs and hands, pelvic and abdominal pain, chronic UTIs and many more symptoms. I was too young to have the amount of the pain I had. The amount of inflammation I experience wasn't normal. My knees and ankles felt like they are burning in acid all the time. The pain form the headaches was unbearable. A neurologist claims I had migraines, but unlike migraines this pain was constant. it never went away. I was always exhausted. I was either not sleeping days at a time or I could not stay awake. I would sleep 18-20 hours a day, even then I felt too tired. The fatigue caused me to constantly lay down. I was a busy mom with a hectic schedule, however the moment I stepped in the house I had to lay down. Once i lay down, I wasn't able to get back on my feet. I had severe neck, shoulder and back problem. I had difficulty grasping things. My hands were too weak.
I had been to many doctors for many different reasons and I was diagnose with many different illnesses; including fibromyalgia, depression, interstitial cystitis, diverticulitis, diverticulosis, migraines, allergies and so on. One of my doctors actually told me that I had to accept the current life quality I had. After my tick bite I had two more pregnancies. My pregnancies were very, very, very difficult. I was in extreme pain that I couldn't walk, sit or even turn one side to another when laying down. Unfortunately doctors kept brushing it off as regular pregnancy aches and pain. I was put on heavy uncle relaxers to bare with the pain. I had many unexplained symptoms and almost miscarried both pregnancies.
Based on a recommendation from a friend, I've made a visit to a health professional that specialized in Interstitial Cystitis (IC). This visit changed my life all around. When the doctor listened to my history, she immediately suspected I had Lyme disease. That was the first time I heard of such disease. After extensive testing I found out, I have Lyme, Bartonella, Protozoal, HHV-6, issues with my neurotransmitters. After 9 long years of accumulating unexplained symptoms, I was finally diagnosed. My initial treatment immediately caused me to become bedridden. I could not even sip water on my own. I was completely dependent on care. My husband was in Afghanistan and I was alone with my 3 children. Shortly after my diagnoses, all 3 of my children received the same diagnosis, my family experienced a colossal lifestyle change. Two of my children got the Lyme disease congenitally. It could have been prevented, if I was aware of my illness. We are still unsure how my oldest son contracted Lyme, since we don't recall a time he was bit. He also never any bulls eye rash.
There was a huge learning curve for my family as we entered the world of chronic illness. I decided to share the knowledge I gained with fellow lyme patients by creating a blog, ExtraLymey.com. The challenges I faced changed my perspective on life. I currently use that new perspective to mentor fellow Lyme sufferers to help them through both emotional and physical struggles. Ever since my diagnosis I have been working very hard to raise awareness. Prevention is the most critical step, since diagnoses is very difficult. Proper diagnosis can take years and by then the illness becomes chronic. That is why I became one of the organizers of an international grassroots campaign called Lyme Disease Challenge. I work with 4 amazing women from different locations in US. We are all battling Lyme Disease, so do our children. We are advocates and we have a vision for a better, healthier world. We are striving for a world where testing is accurate, treatment is accessible, research is funded and doctors recognize Lyme Disease as the epidemic health crisis it truly is.
If you would like to participate in Lyme Disease Challenge follow three easy steps and donate $10 to ILADEF (International Lyme and Associated Diseases Society's 501(c)(3) non-profit education fund). If you prefer not take a bite, you can donate $100 instead.
1. TAKE A BITE: Bite a lime and TAKE A PHOTO OR A SHORT VIDEO of the act – the more sourpuss your face, the better (and funnier!).
2. SHARE A FACT: State ONE BRIEF FACT ABOUT LYME DISEASE, such as the facts provided below. You can say them in your video, write them on your photo, or include them in your post. Help us spread the true facts about Lyme Disease!
3. PASS IT ON: Keep the campaign going — CHALLENGE THREE OTHER PEOPLE – your friends, family, whomever! – to take a bite! Mention them in your video or if you do a photo tag them in your post.
Then! Very Important!
Post it all to your favorite social media outlets. In your posts tag your video or photo with #LymeDiseaseChallenge so we can find you!
The Facts
- Children are at the highest risk of contracting Lyme Disease and are more vulnerable to central nervous system infections.
- Transmission of Lyme Disease and other infections can take place in a matter of minutes, particularly if the tick is not removed properly.
- Lyme Disease has been called "The Great Imitator" and can be mistaken for ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer's, Parkinson's, autism, and other illnesses.
- Research suggests that Lyme Disease and other infections can be spread from mother to baby during pregnancy.
- Studies show that standard laboratory tests recommended by the CDC to diagnose Lyme Disease miss approximately half of actual cases, leading to misdiagnosis and an infection that is more difficult to treat.
- Over 63% of patients treated for Lyme Disease continue to suffer symptoms that can be debilitating.
- The CDC estimates that there are 300,000 new cases of Lyme Disease each year in the United States. Some experts believe the actual number of new cases could be as high as 1-2 million new cases per year in the US alone.
- Lyme Disease has been reported in every state except Hawaii and has been found on every continent except Antarctica.
- Lyme Disease has 6 times more new cases each year than HIV/AIDS, yet it receives less than 1% of the funding.
- Fewer than 50% of patients with Lyme Disease recall a tick bite or any rash.
- There are no tests available to prove that the bacteria that causes Lyme Disease has been eradicated or that the patient is cured after treatment.
- Ticks can carry many different types of bacterial, viral and parasitic infections – some life-threatening – which can further complicate tick-borne disease diagnosis, treatment and recovery.
