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Foundation Staff
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| Joined: | Sat Jul 10th, 2004 |
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| Posts: | 17283 |
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Posted: Wed Jan 2nd, 2008 23:02 |
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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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twyf
Member in Phase 3
| Joined: | Tue Sep 19th, 2006 |
| Location: | USA |
| Posts: | 44 |
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Posted: Sat Jan 26th, 2008 01:40 |
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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 3
| Joined: | Tue Sep 19th, 2006 |
| Location: | USA |
| Posts: | 44 |
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Posted: Wed Jun 11th, 2008 03:03 |
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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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twyf
Member in Phase 3
| Joined: | Tue Sep 19th, 2006 |
| Location: | USA |
| Posts: | 44 |
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Posted: Mon Jun 1st, 2009 01:27 |
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Lymabean's dad here:
Sorry for not posting regularly--I've been out of the country for a while. About Lymabean-
She is now a sophomore in high school. She will take a few classes this summer, and then graduate next year with her peers. Absolutely amazing considering that she missed years of schooling because she had lost her academic functioning.
There are still marks on the wall where she had to steady herself while walking (when she was even able to walk...). Now she is on a dance team at school.
Her two year anniversary is this July. She rates her recovery to be at 97%. Sometimes she still has difficulty finding a word or stuttering, and that is the only symptom left. Her pain, which was excruciating, is gone.
I don't necessarily understand all the ins and outs of the protocol, but I do know this--
If you are disciplined to change your diet, wear sunglasses and long clothing, take your medicines at the right time, have a positive attitude and a strong desire to put up with a long slow healing process, you have a great chance of healing with this protocol, no matter how debilitated you started out.
Two years ago my wife and I were trying to determine how we could take care of her for the rest of her life. Now, we are worrying about college choices and driver's training and balancing her work, school and dance. Who would have thunk it?
Again, thanks to all who have supported by phone, email, or simply by being pioneers in the treatment. I am so thankful to God for stumbling onto this website when I had reached the end of my rope and had almost given up hope for my daughter's healing.
If you are on the protocol, keep on keeping on!
Lymabean's dad
January 2010:
When my daughter was first sent to physical therapy, her therapist correctly was able to diagnose what was happening with her body/mind. She discerned that my daughter's cerebellum was degenerating. Because most sensory perceptions go through the cerebellum, and the bacteria were obviously causing it to misfunction, it caused dizziness, disorientation, losses of smell and memories were confused. Your description of living in a two dimensional world very aptly describes what was going on with my daughter. To navigate through her world, she had to look to see where her feet and hands were because she could not sense them through feel and normal feedback. Her depth perception was atrocious, as was her sense of balance.
Her speech was scrambled, her voice sounded ten years younger than her age, she lost many mental functions and was spiraling downhill. She was continually losing muscle tone throughout her body, to include her face. There were some psychological implications as well.
All the MDs pronounced her symptoms as all psychological, she was making it up, and was "regressive." Her therapist told me, that if she was truly regressing, then she would want baby food, would speak gibberish and would act as a juvenile. "If this kid is regressing, then why is she talking to me about philosophy and CS Lewis? There has to be a biological aspect to this also." The therapist's relationship with a doctor then turning into the prescriptions for benicar and the needed antibiotics.
Slow and steady. Bad days, worse days, then a few better days. After a few months or so the "bad days" were better than the "good days" had been. I will never forget the day that my daughter, who had been confined to a wheelchair with a seatbelt because she could not sit up or keep her balance, asked to put on roller skates. I went outside, and there she went, and then had to skate backwards! Just a miracle.
She slowly regained her mental function. She is still healing from the memories that are now coming back. Her body is probably about at 98% of where it used to be. She is going to school full time, working about twenty hours a week, and is involved with the school dance team after school. Prior to the MP, we were trying to figure out how we would take care of her for the rest of her life. Now we are rejoicing that she will be able to take care of us when we get old.
So be encouraged. Progress is slow, but it is real and progressive.
Keep in touch.
Lymabean's dad
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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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marion villa
Member in Phase 3
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Posted: Mon Jun 1st, 2009 01:44 |
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soooo glad to hear you!!!
all that you tell us is really beautiful
congratulations!!!!
sincerely and very happy for you
marion
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol , ,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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BARNEY
Moderator
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Posted: Mon Jun 1st, 2009 02:58 |
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Lymeabean/ and Family,
WOW, WOW, WOW.
YOU GO GIRL!!! WE HERE AT MP ARE VERY PROUD OF YOU!!!!
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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thelymelight
Guests visiting Phase 1/2/3
| Joined: | Fri Nov 4th, 2005 |
| Location: | Ontario Canada |
| Posts: | 222 |
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Posted: Mon Jun 1st, 2009 03:50 |
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Great to hear this wonderful news.
Your good news gives me hope to stick with the MP....I have been quite disabled by Lyme & Babesia for 19 yrs now... and have tried every other possible treatment with no recovery  ....so there is no where left to go, but here..
Thanks for the encouragement to all of us!!!!
I will keep on keeping on!!!.
Lisa
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Feb08~Olmesartan, Feb09~Ph1. Low lux-some areas of home. MEDS: Cipralex 10mg, Rivotril 1/2 of a 0.5 mg for sleep; iodine spray for thyroid, weaned Hydrocortisone
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Toni girl
Member in Phase 2
| Joined: | Wed Jun 6th, 2007 |
| Location: | Ocala, Florida USA |
| Posts: | 229 |
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Posted: Fri Jun 5th, 2009 16:46 |
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Thank you for sharing such wonderful news regarding Lymabean's progress! I can't tell you how encouraging this is to hear. I have lyme and am on the MP and my four children all have this disease with varying manifestations. Your reports regarding your daughter keep me hopeful for my own children.
Congratulations!
Toni
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Lyme CFS, Hashimoto's FM 125D46 MP 07/07 cytomel phenergan valium O2 mg ox 2/09 25D-4 NoIRs limited outings covered Modph1 09/07 Ph1 03/08
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JanEE
Member in Phase 3
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Posted: Fri Jun 5th, 2009 18:15 |
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I don't know how I missed this progress report. I'm just now reading it for the first time. It says to me that the younger you begin the protocol, the faster you will get well. I know she still has a way to go, but this is just fabulous news, and she has her whole, healthy, life ahead of her. SO exciting!
Best to your family,
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armour thyroid B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D-5-4/09
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Caitiegirl
Member in Phase 2
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Posted: Sat Jun 6th, 2009 15:48 |
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Congratulations Lymabean! You are an inspiration to all the other teens and young adults on the protocol. Being sick is a lousy way to spend high school. So happy to learn you have regained so much of your life and can graduate with your class. You're a brave young lady and obviously have wonderful parents who fought hard for your health.
Hope things continue to go well for you.
Mindy
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Caitlin(18) lyme, seizures, myoclonus, dystonia, digestive, chronic headache, mental fog: 10/23/07 25D 36 1,25D 58, 1/12/09/5.7, 1/18/08 25D 9.9 Cut sun/D 9/26/07 Benicar 10/25/07, NoIRs 10/29/07
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