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Meg Mangin R.N.
Research Team (on leave)
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Posted: Wed Jan 2nd, 2008 20:02 |
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Thanks for the kind words. It's wonderful to read about Lymeabean's improvement. You make a very good point about the maturity and wisdom she will have gained after overcoming this struggle. It's always nice to put a positive spin on adversity.
Please verify that she is taking Benicar at six hour intervals....thanks.
The second and third phase guidelines are available to study participants upon request at completion of phase one. Please see How do I know if I'm ready for phase two? for information on how to request the questionnaire.
Keep up the good work..........
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Nothing contained in this site is or should be considered, or used as a substitute for, medical advice, diagnosis or treatment by your physician.
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twyf
Member in Phase 2
| Joined: | Tue Sep 19th, 2006 |
| Location: | USA |
| Posts: | 42 |
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Offline
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Posted: Fri Jan 25th, 2008 22:40 |
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MP meds: 40mg Benicar 4 times daily (per 6 hrs), Minocycline 100 mg every third day
Will start phase 2 on 6 February
Non-MP med use this week:
3 mg melatonin nightly, tylenol pm as needed for insomnia, advil maybe twice weekly
Light exposure this week: 2 hrs in car, 1 hr in flourescent store lighting
Symptoms: had tingling in left thumb for a few hours, some swelling of fingers and joints, nothing severe
We have nothing but good news to report at this time.
Lymabean had what appeared to be a viral infection, which in the past normally resulted in swollen tonsils, tonsillar stones and much pain and fever over an extended time. However, it lasted only a few days and the symptoms were more "cold like" than "strep like." The pain was bearable and nothing like it was last year without the MP. She is doing much better now.
This week she walked with me almost nightly, and one time she jogged (until her knee started to hurt...). She is also taking up roller blading again. Last night SHE WAS SKATING BACKWARDS AND DOING CIRCLES!!!
Yes, I am shouting, but only because I am so happy. Just this November she was in her wheel chair/using a walker because of poor balance issues, in December was still using the walker, and now she is using neither.
All of the words that she couldn't pronounce all come out clearly now and correct, and now she wonders why we says words like Moffy and Daffy and Voctor and Dweeze and Hoopy. (Mommy, Daddy, doctor, Louise and Huey). She could also never say the word toothbrush--it always came out "toothpaste." Her brain was severly challenged by the bacteria, and now they are losing, and she is getting all of her faculties back.
Her physical therapist was thrilled to see her walking the other day. (She hasn't been to therapy since she started the protocol).
Thank you all for helping to get our daughter back!
Will post again after the Dr's visit.
Dad
Noted
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strep 2002-3, lyme 2003-4, recurring symptoms 2006, anti-gliadin positive| 10/06 D avoid, dark room| 10/06 NoIR| 9/06 25D-24 1.25-42, Benicar 40mg Q6H Mino start 8/7/07| Ph2 Feb08|
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twyf
Member in Phase 2
| Joined: | Tue Sep 19th, 2006 |
| Location: | USA |
| Posts: | 42 |
| Status: |
Offline
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Posted: Wed Jun 11th, 2008 00:03 |
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Lymabean is almost done with phase 2. Her progress is amazing. It has enabled us to try to start to catch up in the other areas of our life.
Her doctor wants her to start public school again. And get her driver's permit. And start working in the summertime. She is progressing so fast that her parents are behind in trying to get caught up in all of the areas that we are behind in.
She has very little sensitivity to sunlight now, and does not suffer ill effects when she forgets her glasses. She has been able to advance her body clock to wake up consistently at 9AM, and will move it down throughout the summer until she's up in time to get ready to start school in the fall. Her physical symptoms are few.
She has regained her athletic abilities, and is thrilled to be able to play volleyball, ride bikes and skate. Running still hurts her knees, but that will soon be better, too. Her stamina and endurance have markedly increased, and she is back at grade level in schooling.
She is tracking her dosing for her own medicines.
To put this in perspective, in November 2007 she couldn't walk without a walker because her balance was so bad. She couldn't keep upright in the car because there was no feedback from her body to her brain. Her speech was garbled and slurred. Her cognitive skills were severely impaired.
We have found out as a family how much that has impacted our lives as we all try to catch up to responsibilities put on the back burner.
We are all thrilled and amazed at her progress, and are excited that she will be able to build friendships in school, as she has been out of public school since 2003, and we have moved since then.
People who saw her at her worst can not believe the changes.
A great thanks again to all who have gone before.
Lymabean's dad
June 26th:
Comments: I start working on Saturday, and am looking forward to going to public school this fall. I feel great and am starting to be able to do things that a normal teen can do. Yesterday I played soccer and volleyball. YAY! I will be posting weekly, and am looking forward to starting phase 3.
July 2008:
I started working a week ago, and it's going great.
At first I wasn't so sure how my body would react to not only a little more sun exposure, but also to the additional strain that it would put on my body. But I am adjusting well and am having no complications except my feet swelling a little bit. I am now almost done in Phase 2 and everything is going well. I am so glad that we have finally found something that is actually working, and that I am getting better!
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strep 2002-3, lyme 2003-4, recurring symptoms 2006, anti-gliadin positive| 10/06 D avoid, dark room| 10/06 NoIR| 9/06 25D-24 1.25-42, Benicar 40mg Q6H Mino start 8/7/07| Ph2 Feb08|
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