alagash98
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| Gender: | Female |
| State: | New Hampshire |
| Online Status | OFFLINE |
| Member Since | 06/10/2008 07:19:32 |
| Last Online | 11/06/2008 12:11:31 |
| Rank | Member |
| A little about me: | My 13 year old daughter has a headache that started 12 months ago. She has it 24/7 with no relief. They diagnosed it as Chronic Daily Headache which I never really agreed with. She has had a CT of head/sinus and recently and MRI and MRV. She does have stomache ulcers too and taking Nexium. Her Ped. Neuros has tried Amytriptaline, Topamax,Depakote and Neurontin. Nothing works. Her Gastro Specialist tried Celexa and Ciproheptadine, didn't work. She just had her sleep study, and has obstructive sleep apnea with nothing really causing it. Finally she is diagnosed with Lyme Disease through Low CD57(28), Positive Igenex IGM(but negative CDC because they won't count band 31 which she hads 3 pluses on) and Positive Urine Blot Assay through Igenex. She had 2 negative Elisa's and a negative WB(bad test with 8 day old blood) through the local lab. We've seen two Pediatric Neuros, Gastro Specialist, Optomotrist, Dentist and Orthodontist(TMJ),Rhumatologist, Chiropractor, Cranial Sacral Therapist, physical therapist, counsoler and the ER at a great "brain" hospital and two different PCP's. We have been told it was all in her head, and she needed serious counsoling. It has been a year of frustration. We have fought the school, and I had to pull her out this year to home school her. Taking that stress off her has helped her and myself. With the sleep problems, she is awake a lot during the night so it was hard to get up at 6:30 and go to school, just to fight with the teachers/guidance/students who did not understand. Now that we know, we are going to make a youtube video to spread the word and become as big of advocates as we can. I just ordered the movie "under our skin" and I'm going to start inviting families and friends over to see it. I'm also reading and learning all that I can so I will be able to help others. Becky |
My Lime Green Ribbon:
"For my daughter with Lyme, and everyone who has suffered with it!"
"For my daughter with Lyme, and everyone who has suffered with it!"
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My Hugs
 | I am so sorry you both are having to deal with such an incredible fight right now. Your daughter should be enjoying this time in her life, and you should be planning fun parties with her. If there is anything I can do, please let me know. Jen :) |
 | Keep up the good fight. You will find the answer, I have faith in you. |
| I love you! |
 | I pray for your rest and health! |
| Welcome to the group! Feel free to explore and if you have any questions let me know. |
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My Diary
| Diary Description: | |||
| Diary Statistics: | Total entries: 0 | Total comments: 0 | Total combined hits: 0 |
My Forum Posts
| Recent Forum Posts | |||
|---|---|---|---|
| Date | Subject | Category | Hits |
| 20 October 2008 | Flu Shot with Lyme??Good or Bad? | General & Support | 272 |
| 14 October 2008 | Finally,Positive Lyme Dot-Blot Assay-Urine Test | General & Support | 107 |
| 10 October 2008 | teen support group? | General & Support | 37 |
| 10 October 2008 | Question about Western Blot Test | General & Support | 178 |
| 29 September 2008 | SS Disability? Should I file? | General & Support | 202 |
| 29 September 2008 | SS Disability? Should I file? | General & Support | 202 |
| 27 September 2008 | It took two years,Disability I won,, | General & Support | 100 |
| 27 September 2008 | Igenex Question | General & Support | 206 |
| 26 September 2008 | Weight gain? | General & Support | 197 |
| 20 September 2008 | lymedisease | General & Support | 40 |
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