Post by kelmo on Nov 5, 2007 10:19:44 GMT -8
Hi. I primarily started searching ways to help my daughter.
When my daughter turned 14, she started getting upset stomachs and migraines.
Close on the heals she started having mood swings, night terrors, OCD, anxiety.Due to depression on both sides of our family, we thought this was just the start of a life of adjustment for her.
Not long into her 15th year, she woke up one morning saying she felt sick and her legs hurt so bad she couldn't walk. I would let her stay home for a week and she would be back in school. She was still sick, but functioning. I still have guilt for the days I made her get up and get to school.
Then, she would be slammed down again with back pain so bad we took her to the ER thinking it was meningitis.
She functioned as best she could until a trauma with a high school teacher sent her spiraling. She was having trouble breathing and was in terrific pain.
We went from one specialist to another as each system of her body became affected...intestinal, new onset asthma, hormonal imbalance, weight gain of 80 pounds in 3-4 months, arthritis pain in all her joints, in addition to all the above.She was given vague diagnoses and many prescriptions.
When a Rheumatologist gave her the fibromyalgia label, I got good and mad. When her general practitioner said, "why don't you go back to your psychiatrist and get your medication adjusted, there's nothing wrong with you". I GOT HOPPING MAD.
Her illness became autoimmune and the only infection that showed positive was mycoplasma pneumonia. So, I took that to the internet. Fibromyalgia/mycoplasma search took me to www.immed.org Garth Nicolson found mycoplasma to be a common infection in Gulf War Vets.
After a few months on a website called The Road Back, I felt it was a good step to try long term antibiotic therapy. Doing something was better than watching my daughter waste away on a mattress on the living room floor.
I was referred to a doctor in my home state. On our first visit, he looked at her and described all her symptoms. We both cried. Someone who understood! I didn't need that file of labs and research on my lap, he knew what to do.
My daughter has been in treatment for bartonella and babesia for the past two years. It's been a loooong battle. Not every treatment fits every person. There are too many organisms and not enought tests.
There has been improvements and setbacks. She has lost 60 of the 80 pounds gained, so we attribute that to success of treatment. She has improved in cognitive function and is able to take several college classes, one of them ON CAMPUS!
She started with azithromyacin, then added Rifampin, Vitamin D, then tested positive for Babesia and exchanged Rifampin for Mepron. After five months of that torture, she is now on Minocycline. It's been a hard drug, but we have hope of it bringing her closer to remission.
She still deals with pain, and is taking medication for psyche issues. Other symptoms come and go, and we just use the wait and see approach.
In the last few months, it was revealed that perhaps the illness I had all during the '90s may also be a TBI. I have developed seizures of unknown origin, and have endured cyclic fatigue. I'm currently on zithromax. It's too soon to tell for me.
Would love to have my son and husband tested, but they don't want to fool with pills.
Would love to come here one day soon and say my daughter is in remission and has moved on with her life. She is now 19 and ready to live her dreams. Sometimes the waiting is hard.
That's the story.
When my daughter turned 14, she started getting upset stomachs and migraines.
Close on the heals she started having mood swings, night terrors, OCD, anxiety.Due to depression on both sides of our family, we thought this was just the start of a life of adjustment for her.
Not long into her 15th year, she woke up one morning saying she felt sick and her legs hurt so bad she couldn't walk. I would let her stay home for a week and she would be back in school. She was still sick, but functioning. I still have guilt for the days I made her get up and get to school.
Then, she would be slammed down again with back pain so bad we took her to the ER thinking it was meningitis.
She functioned as best she could until a trauma with a high school teacher sent her spiraling. She was having trouble breathing and was in terrific pain.
We went from one specialist to another as each system of her body became affected...intestinal, new onset asthma, hormonal imbalance, weight gain of 80 pounds in 3-4 months, arthritis pain in all her joints, in addition to all the above.She was given vague diagnoses and many prescriptions.
When a Rheumatologist gave her the fibromyalgia label, I got good and mad. When her general practitioner said, "why don't you go back to your psychiatrist and get your medication adjusted, there's nothing wrong with you". I GOT HOPPING MAD.
Her illness became autoimmune and the only infection that showed positive was mycoplasma pneumonia. So, I took that to the internet. Fibromyalgia/mycoplasma search took me to www.immed.org Garth Nicolson found mycoplasma to be a common infection in Gulf War Vets.
After a few months on a website called The Road Back, I felt it was a good step to try long term antibiotic therapy. Doing something was better than watching my daughter waste away on a mattress on the living room floor.
I was referred to a doctor in my home state. On our first visit, he looked at her and described all her symptoms. We both cried. Someone who understood! I didn't need that file of labs and research on my lap, he knew what to do.
My daughter has been in treatment for bartonella and babesia for the past two years. It's been a loooong battle. Not every treatment fits every person. There are too many organisms and not enought tests.
There has been improvements and setbacks. She has lost 60 of the 80 pounds gained, so we attribute that to success of treatment. She has improved in cognitive function and is able to take several college classes, one of them ON CAMPUS!
She started with azithromyacin, then added Rifampin, Vitamin D, then tested positive for Babesia and exchanged Rifampin for Mepron. After five months of that torture, she is now on Minocycline. It's been a hard drug, but we have hope of it bringing her closer to remission.
She still deals with pain, and is taking medication for psyche issues. Other symptoms come and go, and we just use the wait and see approach.
In the last few months, it was revealed that perhaps the illness I had all during the '90s may also be a TBI. I have developed seizures of unknown origin, and have endured cyclic fatigue. I'm currently on zithromax. It's too soon to tell for me.
Would love to have my son and husband tested, but they don't want to fool with pills.
Would love to come here one day soon and say my daughter is in remission and has moved on with her life. She is now 19 and ready to live her dreams. Sometimes the waiting is hard.
That's the story.
