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twyf
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Posted: Wed Aug 8th, 2007 00:02 |
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twyf's questions
7 AUGUST 2007
Lymeabean has started her Minocycline today! She took it this morning at 1000. She is still taking the Benicar at 0400, 1000, 1400, 1800, 2200.
She slept until her 1000 medicines. I woke her up to take those and she went back to sleep 1130. She then ate lunch and hung around and needed a nap from about 1300 to 1430. She has ben up since and it is now 2200. Her symptoms today have been fatique, dizziness, some joint swelling (5/10) and pain (4/10), headache (3/10), light sensitivity (2/10). She claims she just feels a little worse than she did before she started the Minocycline. She was even able to help out with Dad today!
I understand/prepared for tomorrow to be a "herx" day. We have nothing planned but to rest and play with her puppy.
She will go on Friday to see her doctor for a check up.
Will let you know how tomorrow goes!!!
Mom
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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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Aussie Barb
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Posted: Wed Aug 8th, 2007 04:17 |
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Thank you Mom
Welcome to the mino forum. All sounding good.
see Calcium requirements for children re query..
Please list your MP meds doses and schedules in an index format at the beginning of your message each time you post. It is helpful to Staff for assessing your situation and replying, and for other Members for reading and understanding .. and for your own reference at any time. thank you...
Let us know if you have any questions.. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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twyf
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Posted: Thu Aug 9th, 2007 15:40 |
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Aussie Barb, Would you please tell me how to put the medications in index format. I've searched other's postings and it seems to be in the signature line. If that is correct, I do not know how to add/change things to the signature line. Can you show me a link that gives the info about that? Thanks- Lymeabean's Mom
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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
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Posted: Thu Aug 9th, 2007 15:46 |
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I found out how to change the signature. Please let me know if this is how the board likes it. If not, I'll be glad to change it to the correct way! Thanks!!!
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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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Aussie Barb
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Posted: Thu Aug 9th, 2007 15:46 |
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Thank you Mom
Here is the link re signature line. Yours has been edited - just needs date etc. Thank you.
Meds index: you may like to look how others in this forum do it.
It is good for us to know the meds dose /schedule and how long, or for how many doses you have been at that dose level. and any changes made. eg extra Benicar used etc.
Thanks, all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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twyf
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Posted: Thu Aug 9th, 2007 15:53 |
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Lymeabean took her second dose of Minocycline today. The second day started out rough. She had a horrible headache- but only when standing. She was very fatiqued and extremely irritable. She was very dizzy and we made her lay down for most of the day. She has still had joint pain and swelling. By evening, she seemed more like her old self. She still had her symptoms, but they were tolerable enough to interact with the family and even felt well enough to take her puppy outside for a little walk after dark. I gave her her second dose this morning and she still seems to be grumpy and has been spending lots of time in her room being quiet/sleeping where it's dark.
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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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Aussie Barb
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Posted: Thu Aug 9th, 2007 16:02 |
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Thank you Mom
You may wish to try extending the the schedule for the mino past the 48H mark to assess if it is helpful to LB.
Some find:
extending to Q72H - or 3 day dosing achieves more tolerable symptoms.
or some find 3 day dosing may increase immune response.
Dont let symptoms go to intolerable, take your dose at a shorter time if necessary to hold your symptoms at tolerable.
a reminder also, to use the extra Benicar to minimise any symptoms.
Let us know if you have any questions.. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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twyf
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Posted: Sat Aug 11th, 2007 14:28 |
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I took Lymeabean to the doctor yesterday. I relayed to him the answers to our posted questions from our last visit. He was secure with the answers and only had one more for me to post today. He asked for a specific medication and dose that would work for headaches. Lymeabean is 15 1/2 and weighs 101 pounds. When I printed the pain management sheet, I only saw valium. He said that was for anxiety or muscle spasms and wouldn't help a headache. If you could relay a medication that would help the headaches, I will forward it to his e-mail address and he said he would call it in the the local pharmacy.
Her symptoms are about the same (headaches, joint pain, fatique, headaches), but not as intense since she is still able to be involved in family activites and "hang out' with her siblings. Right now she is in the other room laughing and playing with them.
Thanks!
Lymeabean's Mom
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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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Aussie Barb
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Posted: Sat Aug 11th, 2007 14:38 |
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Mom
As well as following the essential aspects of avoiding light and D,
Natural light > protect skin and eyes..
Artificial light > protect eyes / not skin..
Our first suggestion to minimise symptoms, is to adjust the Benicar dosing.
If your Dr agrees: to minimise symptoms - you can take extra half tablet (20mg) Benicar any time during cycle, or adjust dosage to 40mg Q4H. see also BenicarQuiklink many Members report chewing or sublingual gives faster absorption/relief.. When and why should I vary my Benicar schedule?
and then, to find the appropriate mino dosing /schedule suitable to you.
Any pain medication your doctor has determined is safe for you to take is not contraindicated on the MP.. We do not recommend the routine use of aspirin.
Thank you, all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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twyf
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Posted: Wed Aug 29th, 2007 15:52 |
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29 August 2007
Benicar 40mg 0400, 1000, 1400, 1800, 2200 daily
Minocycline 25 mg every third day
We had to move the mino to the third day because there wasn't enough recovery time, and it has worked well for her.
Lymabean has pretty much had this pattern; 1.5 good days after taking mino, then 1.5 days immunopathology. Main symptoms remain fatigue, headache, dizziness and joint pain, which are not worse than before she started the MP. But her good times seem to be much better than she was before the MP--her voice is pitched normally, her pronunciation of words is much better, her dizziness recedes. We can see definite progress.
Her ability to do math has come back. Last year at this time she couldn't add 2 and 3 and come up with five.
Her ability to read is slowly coming back, also. She fought her way through "Where the Red Fern Grows," which is miraculous compared to a year ago.
She basically hasn't left the house due to the light, and that has helped a lot also. She will start home school co-op on Mondays.
Mom has had her hands full taking care of her and also her husband with his IV antibiotics and external fixator pin care, getting school started for the whole family, restarting homeschool with Lymeabean, which is why we haven't posted lately.
Dad is finally able to sit long enough to type this.
He is sure proud of Lymeabean's mental strength and committment to see this through, and is reassured that the protocol works as advertised.
Thanks to all the positive folks on this board who have encouraged us and have pioneered the way. It is awesome to have hope when the mainstream medical community said that there was none at all....
When do we know when to switch her to 50mg mino? We are in no hurry, we just want her to be as comfortable as possible. We understand that this is a marathon, not a sprint.
Thanks again,
Lymeabean'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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jrfoutin
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Posted: Wed Aug 29th, 2007 16:21 |
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Lymabean & Dad,
Glad to see there is some good progress going on. Lymabean should be happy to see some changes going on too, and even though we all have to do immunopathologic responses (ouch), it does keep us going to have the good days be better than we had experienced for a very long time.
I'm still noticing light must be respected so hearing Lymabean is staying in and homeschooling is good news. I hope this good trend continues.
IV antibiotics sounds like Dad is thinking about the MP too maybe? I sure hope you all can get well. Good reading:
Best to you all, and keep up the good work!--Janet.
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2
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twyf
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Posted: Wed Sep 12th, 2007 16:41 |
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September 12, 2007
Benicar 40mg 0400, 1000, 1400, 1800, 2200
Minocycline 25mg every other day
She was stable and improving greatly on the mino every third day. We moved to every other day, and she seems to have a harder time than before. Is it wise just keep her on the every third day or wait and see if she stabilizes on the every other day?
On the good side--she is doing well with her schoolwork--at grade level in Algebra and English. A year ago she couldn't add two plus two or read the word "the." We are so thankful. Her books on tape and cd are coming. Most of her progress came from dietary change and light avoidance, as we didn't get a dr on board for almost a year.
The dizziness continues, but it is not nearly as bad as a year ago, when she was fainting into her food.
I think that she would be ready to go to the 50 mg every third day if she were still on the third day regimen. Need advice as to what to do and when to up the dose.
Dad will have surgery on his femur again this Friday. If the bone has healed enough, then they will remove his external fixator! Lymeabean has become an expert at doing the pin-care cleaning with q-tips and peroxide!
We see slow, but steady, progress, and are so thankful. There have been times when her childlike voice (symptom of the Th1) has been replaced by her 15 yr old voice, that we haven't heard for a long time.
We also appreciate the safety of this treatment plan versus all of the alternatives. I just got off of IV abx when they started to cause asthma and hives, and she had similar reactions when she had her IV years ago. This is so much gentler, too.
Thanks for all of the support, am awaiting a response re the two or three day dosing of the mino.
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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Aussie Barb
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Posted: Wed Sep 12th, 2007 19:11 |
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Thank you Mom
Tolerable is always the guiding line. Phase One is the training ground for getting the feel of your immune response, your symptoms - and for gaining personal experience in managing all aspects of MP. ie eg including adjusting your meds, avoiding light and D and etc..
Noting length of time you have been on the mino 25mg dose level, and then having explored the 2 day and 3 dosing schedule, and noting "she seems to have a harder time than before" is indicative of time to make a change.
all best to all the Family. Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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twyf
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Posted: Fri Oct 5th, 2007 16:57 |
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Dad here:
Took Lymabean to the doctor yesterday to get her meds refilled.
She is taking 40 mg Benicar every 6 hours now, and has been on mino 50mg every third day.
Her doctor's comment was, "This isn't the same kid that was in here two months ago."
And he is so right.
Her headach and joint pain is diminished greatly, her brain fog is less, memory better, and balance is somewhat better. Her childlike voice is now mostly a thing of the past. Her handwriting, which was horrible, is now back to the beautiful script that she's had in the past.
When we started the MP for her two months ago, she was struggling to do grade level algebra. Now she is doing eight subjects and doing them well. She now has textbooks on cd for the blind and dyslexic, and that helps as she can read along with the text and listen at the same time.
To give you an idea of how this ride has been for her academically--in the eighth grade she tested at a twelfth grade level or higher in reading and math. A few months later her health declined rapidly, and she couldn't do simple addition or read simple words without extreme difficulty. We learned of the MP shortly after that, and took the measures that we could--light avoidance and dietary changes, and her math ability came slowly back, with her reading ability coming back even slower. But they did come back.
Now that she is on Phase One, the difference is astounding. It's just sometimes hard for us to remember how bad things were because the changes are so slow.
Her bad days are much, much better than her good days used to be.
We will be advancing her to 75 mg mino next dose, and will see how things go. It took her a long time to stabilize on the benicar alone, and then when we added the mino, it was like a truck hit her, but now we can't discern the days when she takes the mino. It used to be extremely obvious when she took mino, but now it's only noticeable to her.
Slow and steady seems to work really good for her. We are all in this for the long haul, and her doctor, great man that he is, prescibed the benicar for the whole year!
We also stopped by and saw her physical and occupational therapists, and they really noticed the difference and were really, really happy. They have been wonderful friends to her and were really enouraged at her progress. When she gets stronger, we'll take her back and let them help get her hardened athletic body back!
Many thanks to the wonderful people on this board and also to Dr. Marshall for figuring this out, and to all the incredible folks who were pioneers with this protocol. This surely isn't the easiest thing to go through, but the struggles are surely rewarded greatly.
My family has been encouraged by you all in different ways, and we are extremely thankful and grateful.
For Lymeabean,
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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LH1953
Member in Phase 3
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Posted: Tue Oct 9th, 2007 03:06 |
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Wonderful! Just remember not to forget just how sick she was. As we start our recovery, we get excited and have the tendency to start pushing ourselves a bit too hard. As you once told me, it is a marathon, not a sprint.
Please be careful when considering physical therapy, as this can be very difficult for a body that is fighting enough just to do the MP. All in good time.
EXERCISE:
Are there any Guidelines on Exercise & the Marshall Protocol?
range of motion exercises
GUIDELINES FOR EXERCISE
You will continue to see progress with the MP. Just remember for every 5 steps forward she will also take 3 back. What I mean is that as she progresses on the MP, when she is stable on the existing dose, that is her 5 steps forward. Then when it is time to get to the next level, that is where the 3 steps back comes into play.
As you know, I feel the MP has saved my life and given me a second chance. I am so HAPPY that she too is on her road to recovery.
Take Care with lots of love , huges and kisses, Lori
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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Meg Mangin R.N.
Research Team
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Posted: Tue Oct 9th, 2007 06:49 |
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Thank you for sharing the wonderful news of Lymabean's progress.....please give her our best regards...... Her experience illustrates nicely the wisdom of not speeding beyond a comfortable pace on this journey to wellness.
To maximize safety, protocol efficacy and chance of success, we expect members (even those who think they are doing well independently) to post in their progress report at least weekly so Staff can catch any problems early and have details of past responses to be better able to assist you if you need help.
In order to provide an accurate response, it is essential that Staff has enough information about your current situation. Every time you post, please briefly list pertinent details in an index format at the beginning of your message, noting:
MP meds:
(doses, schedules, changes, length of time at current dose and schedule)
Non-MP meds:
Light:
(amount of exposure, NoIRs)
Symptoms:
(List those that are significant and indicate if tolerable or intolerable)
We look forward to seeing lots more progress.........
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twyf
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Posted: Thu Oct 25th, 2007 22:42 |
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Dad again....
Lymabean is now two weeks into the 75 mg mino.
Benicar 40 mg every six hours
Minocycline 75 mg every third day (started just after last posting)
Symptoms remain the same (fatigue on abx days, brain fog, some joint swelling, headaches).
On the plus side, she was able to take five or six steps into her sister's arms without having anything to balance on and did just fine. Just couldn't quite figure out how to stop.... Kept on running over big sister!
School has been more of a struggle now that the mino has been increased because of both mental and physical fatigue.
Her bad days are still so much better than her good days used to be.
I post as often as work and health issues allow me to....
We are still so pleased with her progress.
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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Meg Mangin R.N.
Research Team
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Posted: Fri Oct 26th, 2007 02:31 |
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Thanks for checking in.......we are very pleased to learn about Lymeabean's progress.
During Phase One you will learn to identify the immune response symptoms and manage all aspects of the MP....avoiding light and vitamin D, getting adequate rest, pacing activities, eating well, etc are all important. You will gain experience adjusting MP meds and using the personal tool kit to maintain tolerable immune system reactions. This skill will carry Lymeabean smoothly through the protocol; when you have learned to manage on a day-to-day basis, you will be equipped to handle a crisis if it occurs. Carry on.....
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twyf
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Posted: Fri Oct 26th, 2007 19:47 |
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Thanks so much for the response.
We haven't had any crises yet so we are all thrilled.
Today she was able to balance standing for over 30 seconds. It is really amazing considering where she was.
She just got a 98% on her algebra test, which is a huge improvement over her not being able to do simple addition twelve months ago!
We are so thankful...
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
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Posted: Tue Jan 1st, 2008 01:51 |
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Benicar 40mg four times a day
Mino 100 mg started 6 December every third day
Progress report for Lymabean:
She saw her doctor this month and he tested her walking ability as always. This time, she was able to walk nearly unassisted when he realized that she needed to look ahead instead of at her feet. It seems that her vestibular response has been all messed up for nearly a year, and to walk she had to have visual input.
Her dr tested and moved her feet with her eyes closed and for the first time, she was able to receive the signal from her feet to her brain and determine where her feet were.
Her progress has been astounding (except to us, who miss the changes because they are so slow...). Her voice has lost it's childlikeness, (the dr says it dropped two octaves), her pain level is much lower, she's been waking up earlier, school is easier, she is much more sharp mentally, her speech defects are fading, she fights more with her little brother.
She is now able to carry conversations again, and is getting caught up. Her writing is back to her normal beautiful penmanship, and she no longer misspells.
It won't be too long before her dr will allow her to get her drivers permit. She still has some issues when she has lots of light exposure, but nothing of real significance.
Still a night-owl.
Her body hurts because she is learning how to walk correctly again. I can surely empathize with that. Her strength and endurance are slowly coming back.
Apologies for not writing more often--our family has a lot of catching up to do from her illness and my broken femur. There has never been a time since she started the protocol where we were really concerned about her health, fortunately. She had some hard days in the beginning, but they were better than many of the other things that we have experienced together with her health.
I know that soon she will need to start phase 2, and we will be happy to get her to fill out the questionaire. Two months ago, she couldn't have....
As the year ends, we have so much to be thankful for!
Tonight she is teaching her Granny how to crochet.
I would like to thank Dr Marshall for figuring it out to begin with, and those brave and (probably desperate) pioneers who helped to make it easier for those who followed. And thanks to the moderators who give of their time and energy, and to the folks who have encouraged us to continue to work to find a dr and not give up until then.
It is awesome to know that soon she will be caught up again to her peers, but will have the maturity and wisdom that can only come when you have fought and overcome something of this magnitude.
Happy New Years to you all!
Lymabean's dad
I know there is a long ways to go, but if the progress continues, there is nothing left but to be thankful.
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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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