Progress
0 %
Goal End Date is Jun 23, 09 154 days ago.
Current Weight (Lbs)
208
hope143 
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About Me
hope143
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About Me
I am the mom of three incredible boys and I have an amazing husband. Three years ago our wonderful, incredible life came to a major hurdle. Our oldest son was diagnosed with a severe case of Lyme Disease, which they suspected he'd had for over a year and he had been misdiagnosed with mono. This misdiagnosis became a BIG problem since the bacteria from Lyme ended up in my son's CSF and Brain. He was very very sick. Nothing worked! We tried the pic line, and many many antibiotics and alternative therapies and he continued to go downhill. He was completely homebound and dependent on us. Then in March 2008, he passed out in our kitchen. We took him right to our MD, who scheduled an MRI and to our complete shock, the dx came back with a 28mm ACM, syringomyelia, and spondylolesthesis. It was beyond fear! We were like deer in the headlights and we cried and mourned for our brilliant, witty, loving, sensitive, artistic, athletic boy because for the first time in our lives, we had no control over what was happening to our baby. And they told us he might become paraylized -- the herniation was 28mm and the compression was dangerous. They told us he was born with this and that is when I became very angry because I knew that he was not. He was perfect and healthy until contracting Lyme Disease. They had very few answers and when we settled into the realization that we needed to do much more than what was being presented to us, we made it our goal to find the answers for our son's illnesses and to be his voice and advocate. So . . . We search, we meditate, we ask for universal wisdom to guide us each and every day. And our boy has some good days that we hope will become more and more good days. And we are blessed with our other 2 who are incredible in their helpfulness and their desire to love and nurture their older brother. For us the search and challenge is on and we and my son's health and spirit will prevail.
I am the mom of three incredible boys and I have an amazing husband. Three years ago our wonderful, incredible life came to a major hurdle. Our oldest son was diagnosed with a severe case of Lyme Disease, which they suspected he'd had for over a year and he had been misdiagnosed with mono. This misdiagnosis became a BIG problem since the bacteria from Lyme ended up in my son's CSF and Brain. He was very very sick. Nothing worked! We tried the pic line, and many many antibiotics and alternative therapies
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Interests
My children, Art and graphic design, Photography Nutrition, Health, Fitness and Wellness, Meditation Reading, Researching chairi and Lymes disease, Writing and much more!
My children, Art and graphic design, Photography Nutrition, Health, Fitness and Wellness, Meditation
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Journal
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Hugbook
Ray of Sunshine
Thanks, hope143 for your reply to my discussion post. It is very frustrating and disheartening to see children who should be enjoying carefree lives...struggling with this horrible disease, or the after-effects of being ill and isolated from friends, etc. And, all from a tiny tick....
I do hope that things are looking up for your son and family.
Take care!
Hug
I know how tough it is dealing with medically challenged kids and then with Lyme....Oh my! My LLD -Opthalmologist is in Lancaster, PA. Is that near you? He knows his stuff.
Hug
Hi, Thanks for the invite. Your children are handsome. God Bless, Keep in touch.
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Support Groups
Close Arnold-Chiari Malformation
My 15 year old son Alex has been suffering with Lyme disease since he was 12. He was allergic to most of the Lyme meds. we used natural products to bring his bacteria count down. In March '08 he passed out and had an MRI which showed a 28mm Chiari and a syrinx between C2-C3. He suffers headaches, fatigue, major visual problems, pain, hot and cold spots, numbness and tingling for a long time. He had decompression surgery in April. Three weeks ago we found out that his surgery did not work.
Close Lyme Disease
My 15 yr old son was diagnosed with Lyme's three years ago and it's been an up hill battle. He was allergic to the standard antibiotics and went into anaphalaysis on the IV pic with Rosefin. Then in March of 2008, he had a drop down expisode and we took him for and MRI only to find that he had developed a severe 28 mm herniation in his cerebellum called Chiari Malformation.
Open Syringomyelia
hope143 hasn’t entered any details for this support group.
