There are a few t.v. shows which have information on Lyme. A documentary recently came out called Under Our Skin. It teaches everything people should know about Lyme like the infection itself, what it's like to live with it, and the politics surrounding "The Great Imitator." It is being shown in different places across the country, and it can be bought online at www.underourskin.com
Here is my story of my life with Lyme Disease. It all started about seven years ago with some pain in my back and neck. I was hurting, but I wasn't very limited as to the things that I could do. I don't even remember if I went to a doctor about it. I just lived like that.
About 2 years later, I began getting recurring strep throat about once a month for 10 months in a row. That was unexplained, too. But this time I went to an Ear, Nose, Throat specialist and got put on an allergy medecine which cleared it up.
That same year I was ice skating and I fell backwards and hit my head on the ice and blacked out. I went to the Emergency Room and they told me that I had a mild concussion. I believe that this could have been what triggered my illness to get worse.
Over the past 3 years I have been gradually getting more and more symptoms and in general feel sick. I went to many, many doctors before my diagnosis, including an Ear, Nose, Throat specialist, orthopedic surgeon, physical therapy, cardiologist, neurologist, vestibular rehab, urologist, an infectious disease specialist, and many pediatricians.
None of my doctors were able to, or wanted to find out what is wrong with me. Since they couldn't figure it out, they gave up on trying to help me. Most of the doctors told me that my illness was 'all in my head'.
A few doctors even told me to go to a psycologist. Since the doctors didn't believe me, my parents didn't, either. I am going to be a doctor when I'm older and I am constantly watching health shows.
My parents think I'm getting Hypocondrioa from them and that I was just trying to 'find a disease' for attention. I did a lot more research to try to figure this out myself since the doctors weren't helping me.
I was reflecting back to some of the tests that I had gotten when I remembered that I had been tested for Lyme Disease a lot. I researched the disease so much and I read about it and have even talked to people who have the disease and I was convinced that I have it. I absolutely, positively KNEW that this is what is wrong with me. I just knew it.
I was right. After two long years of begging my mom to take me to a LLMD, she took me. That alone made me feel so relieved. My mom refused to take me to a LLMD, so I often wondered if I was going to die before I got a diagnosis.
The first time I went to the LLMD was in June 2006 and three weeks later, I found out that my bloodtest came back positive. The moment the doctor said that the test was positive I felt so incredibly relieved.
I immediately looked at my mom to see how she reacted to it. I don't think it really sunk in for her until a few minutes later when she was driving home. She looked like she was trying to not cry.
Because there she was, telling me that I didn't have Lyme and making me feel like I was looking for attention when I did have it all along. She apologized.
I think that if I had not been so determined to get diagnosed, then I could still be very sick and not have a diagnosis. Hope is really what has been keeping me going.
Now I am on a mission to spread hope and inspire other people to never take 'I don't know' for an answer. You have to keep searching for the answers that you need until you are satisfied. Well, thanks for reading this. I hope this has opened your eyes-- even a little bit about the confusion of Lyme disease.
Hi! I'm Victoria. By making this, I'm hoping that it will increase awareness and hope to "The Great Immitator" called Lyme Disease. Some goals that I have for making this page is to offer support and hope to those who need it. Feel free to post your story of what you are going through or your success stories. I know that it is easy to feel alone with this disease. We don't look sick, so people overestimate how we feel. Our familiy and friends often abandon us when we need them the most. You are not alone. I promise. You can always talk or vent to me. Remember: there is always hope... and Lyme Disease will not win the battle. You will win. :)
To start off, here is some important information regarding Lyme Disease:
Lyme Disease is a seriously complex infectious disease characterized by a skin rash, joint inflammation, and flu-like symptoms, caused by the bacterium Borrelia burgdorferi transmitted by the bite of an infected insect (not just ticks), although symptoms vary and most people never get a rash. It also can be transmitted congenitally, sexually, and through bodily fluids.
The ELISA, or titer, and the Western Blot are the only tests to check for Lyme but can be useless because they are known to give false negetive results. So, the only real way to know if you have Lyme Disease or any other tick-bourne illness, is to see a LLMD (Lyme Literate Medical Doctor). When a person has Lyme, it is very important to see a knowledgable doctor. Most doctors do not understand Lyme.
Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
There are over 100 different symptoms of Lyme Disease, so the ones that I listed are only a few of the many symptoms.
Besides Lyme disease, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, Babesia and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It is very important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
It is very normal to feel as though you are going through this alone. It saddens me because you are NOT alone but since people treat you like you're making it up, you don't always like to tell people sometimes because it's like you just don't want to hear another person in your life tell you that nothing is wrong with you, even though you desperately want and need the support. It's a horrible feeling to have when you know that there is something wrong with you and feel as though nobody understands. It's amazing the things people take for granted. I would love to have all of my non-believers go through a week in my shoes. Maybe then they will understand better what I'm going through a little more. Trust me you are not alone in this, I promise you. You have to maintain strength to keep having hope, even when it feels like there isn't any. There is always hope. Always. Without hope then what kind of life will you be living? Would you feel happy? Would you feel satisfied? Hope is so important. It's taken me awhile before I was able to be in that mindset, but I feel mentally better. I believe that I can and will beat this disease and that it will not ruin my life. I won't let it. You are always more than welcome to vent to me. I would love to help you in whatever ways I can.
I'm truly honored to have you as a new friend. I look forward to getting to know you and to our friendship. Please stay in touch!
Take Care & God Bless, Sharon† *Proud Army Wife & Military Supporter *Bulldog Mom To Winston, Gracie & JJ *"Carolinas PI" and Animal & Child Protection Advocate *NC & SC State Director For Association Of Christian Investigators *NC, SC & GA State Director of Ms. Christian US Pageants “Celebrating the beauty inside and out of virtuous women!” *Owner/Founder of Bulldog Co Network
Please pray for JJ. Details on my blog and at wingrace.com. Thank you! &
hi, thanks for adding me as friend! I was 3 years ago, Lyme borreliosis detected. Here in Germany, the medical care was the illness are very poor. There are few doctors are familiar with the treatment. In addition, many ignore the Coinfektionen. But I will fight to those who do not fight has already lost. The disease has my social life here very much restricted or ruined. So my concern is how thousands of Germans, however, despite increased arragment here does not deal in health policy matters. So according to the motto which I do not see is also not there. Bettina
Thanks for the add. Lyme Disease left me in a wrecked world but I am marching on! I lost my hearing and my eye sight is poor due to Lyme. I have constant pain and swelling and tingling and numbness in my neck at the spine and sometimes my arms. My joints mostly shoulders and knees are weak and inflamed. migraine, ect. the list goes on. I'm fighting fatique majorly right now. Being only 26 I feel like an elderly lady most days! People and friends have a hard time understanding why I'm always feeling like this. I've learned you must learn to become your own advocate!! Go online and do your research everyone! It might be your saving grace!!!
Hi! I'm Victoria. By making this, I'm hoping that it will increase awareness and hope to "The Great Immitator" called Lyme Disease. Some goals that I have for making this page is to offer support and hope to those who need it. Feel free to post your story of what you are going through or your success stories. I know that it is easy to feel alone with this disease. We don't look sick, so people overestimate how we feel. Our familiy and friends often abandon us when we need them the most. You are not alone. I promise. You can always talk or vent to me. Remember: there is always hope... and Lyme Disease will not win the battle. You will win. :)
To start off, here is some important information regarding Lyme Disease:
Lyme Disease is a seriously complex infectious disease characterized by a skin rash, joint inflammation, and flu-like symptoms, caused by the bacterium Borrelia burgdorferi transmitted by the bite of an infected insect (not just ticks), although symptoms vary and most people never get a rash. It also can be transmitted congenitally, sexually, and through bodily fluids.
The ELISA, or titer, and the Western Blot are the only tests to check for Lyme but can be useless because they are known to give false negetive results. So, the only real way to know if you have Lyme Disease or any other tick-bourne illness, is to see a LLMD (Lyme Literate Medical Doctor). When a person has Lyme, it is very important to see a knowledgable doctor. Most doctors do not understand Lyme.
Below is a Lyme symptom list. You can have any combination of symptoms.
