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robyno
Member in Phase 3
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Posted: Sun Jan 29th, 2006 04:28 |
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Thanks for the cartoons, Chris and Barb. Matt will love them once he is on-line himself. Movies are definitely high on his list of things to do when he is better, along with reading, swimming, running (he said today that he is even looking forward to getting a stitch from running too much), footy, hanging out with friends........He says that everything will be 10 times as good as it was before - I don't think anyone will argue with him about that!
Matt is having a herx-free weekend before we increase his abx tomorrow. He is a bit grumpy today after having a poor sleep last night, but everyone is entitled to an off day, especially when you have a lot to put up with. But generally his spirits are high. Matt's brother, David, has only one more week of school holidays left, so that will be a crunch time for him - Matt has loved having him around so much.
Matt is still "practising" his reading every day and little by little he is able to read more without it hurting too much. It will take a while before he is reading novels again, but it will happen. I often wonder how many kids out there in Special Ed classes who are having reading problems actually have Th1 disease to varying degrees.............I am sure it would be significant. These kids would know how to read but don't because it just hurts. It really makes me want to scream, throw things, cry, etc etc etc. How can they get help when doctors and teachers on the whole just don't know about it?
I guess Matt is not the only one who is grumpy today - maybe I should go lie down as well!
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Sun Feb 5th, 2006 23:54 |
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Matt is moving along nicely. We will be getting a prescription from our Dr for another antibiotic next week so that should be interesting. Matt read two (small) paragraphs of one of his books yesterday - that's the most so far and he was very pleased with himself. Newspaper headlines are a piece of cake now so he doesn't even bother with those anymore.
Matt wore out his CD/MP3 player so we went for a short road trip yesterday to get him a new one. It is "seriously cool" - I also hope that it lasts longer than the last one. His room if definitely wired for sound these days!
David went back to school today and didn't get any sympathy from his brother when he dared complain about it! I know one little boy who would just love to be there........Not to worry - Matt is too busy getting well at the moment to worry too much about school.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Sun Feb 12th, 2006 09:16 |
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We see our Dr tomorrow to get our next antibiotic prescription, which is pretty exciting. It is very obvious now that Matt is doing much better with his energy levels and even his voice is only hoarse when he is herxing strongly. Matt's sister arrived from Adelaide today and was very impressed with how well he is doing, which gave us all a lift.
Matt has started reading ME a book now, instead of the other way around. He can read a page at a time without it hurting at all now and is looking forward to seeing how much that will improve over the course of the week. He still gets very down every now and again (he is just soooo sick of that headache) but not as often as he is entitled to! We have voted the headache #1 on the list of symptoms we will most like to see disappear!
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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oliviat
Health Professional
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Posted: Fri Feb 17th, 2006 16:00 |
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| How totally exciting that Matt is starting. My 15 year old nephew Michael has just satrted phase two. He said to tell Matt he is now on the way to recovery. It may be slow, but it is coming.
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Aunt to Michael. He was diagnosesed with Sarc of muscles at age of nine probally had it since he was four. 2/06 Hestarted phase two of MP.
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robyno
Member in Phase 3
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Posted: Mon Feb 20th, 2006 09:34 |
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Thanks Marie - Michael is very much in our thoughts. I am sure Matt will start emailing him as soon as he can tolerate a screen again. He often says he would love to talk to Michael.....maybe I should arrange with Dawn for Matt to call him on the weekend (he can handle phones!).
We have had a great couple of weeks, probably the best since Matt has been sick. He has just about finished his current combination of abx and is about to start on the next. He read over 6 pages of his book today before it started to hurt and is very much looking forward to our celebratory box of chocolates when he manages a whole chapter. He gets crapped off about being inside so much, but other that that he is still pretty cheerful. He calls his friends to catch up on the news from school and is enjoying some great novels on audio tapes. He will be a very well-read young man by the time he coes through the MP!
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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BARNEY
Moderator
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Posted: Mon Feb 20th, 2006 19:54 |
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Robyn/Matt,
It just thrills me to my very soul to hear how well Matt is doing and how much he is enjoying doing some of the things his illness did not allow.
Matt, I am with you, I want to go outside so bad, but if I go out after sundown it sort of takes care of that feeling for a few days till I can go out again. I had this (I guess you could call it a daydream) of flinging the doors open and going out without all of the MP garb and going any place I want to....I know that day is coming when I can really do it....so....until then Matt.......we will figure out things to do inside until the enemy (the sun) goes down.
Here's a toast........to the day the sun is not longer our enemy.
HANG IN THERE (ADOPTED) GRANDSON, YOU AND I BOTH ARE GOING TO MAKE IT ALONG WITH MICHAEL!!!!!!!!! LUV, 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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robyno
Member in Phase 3
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Posted: Mon Feb 27th, 2006 10:23 |
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Thanks Barney - I read your message out to Matt and he gave you a big grin.
Well, Matt earnt his box of chocolates almost a week ago and on the weekend he actually finished the book (>200 pages!!). His pb for reading in one sitting is 24 pages and he adds to that every day. So I think we are just about ready to give reading a big tick on our list of symptoms.
Matt is handling his next abx pretty well so far, touch wood. His tic does not seem to be herxing this time, but his fatigue certainly is. His periods of herxing aren't quite as long either and he says that his background headache (that horrible never-ending headache that started in June 2004) is not quite as bad. He is certainly progressing faster than we thought he would - I probably shouldn't say that as I don't want to jinx us, but ......
I was in bed most of the day yesterday with a migraine. I feel very humble when I think that that is how many MPers feel every day and here I was this morning waking up feeling OK again. I can't believe what you guys go through.
Best wishes, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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CJ
Member in Phase 3
| Joined: | Fri Apr 1st, 2005 |
| Location: | Byron, Michigan USA |
| Posts: | 255 |
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Offline
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Posted: Mon Feb 27th, 2006 12:57 |
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It is so Wonderful to read of Matt's progress!!! He has come so far.
You're doing GREAT Matt!
CJ
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Saroidosis/lungs, 25D7 (8/07) Spireva,Ibuprofen, NoIRs, lite exp r/t work
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robyno
Member in Phase 3
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Posted: Sun Mar 5th, 2006 09:46 |
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Matt has read three books now but still can't read as much as he would like in one go (pb stands at 34 pages) so he refuses to tick reading off his list of symptoms just yet. He tried the TV for a couple of minutes but it still hurts too much. But a couple of minutes is still a lot more than he has been able to tolerate in well over a year now. His iPod screen is his next big challenge - it will be great when he doesn't have to ask his brother to find things on it for him.
Matt was thrilled to be able to talk to Michael on the phone one day last week. They will be able to compare notes and grumble to each other about being inside. It will do them both good.
We have just ramped up one of Matt's abx so he is in for a couple of rough days. Otherwise, he is doing fine.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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BARNEY
Moderator
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Posted: Sun Mar 5th, 2006 15:39 |
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It thrills me to see that Matt and Michael are going to be able to talk to each other. Comparing notes for two mates/guys will be the 'icing on the cake'.
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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robyno
Member in Phase 3
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Posted: Sun Mar 12th, 2006 07:24 |
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Matt survived his abx ramp-up OK and will be ready to go again on Wednesday. He seems to have plateaued somewhat with his reading, though is in the middle of a new novel by one of his favourite authors (Gareth Nix). He gets a bit tired after about 15 pages or so and has to stop. His TV watching has staggered around the 5-6 min mark. I guess it will take off again once he starts killing more bugs in the right places.......it is curious that the improvements speed up and then slow down a bit.
Matt is off to the dentist tomorrow as one of his baby teeth is coming out in pieces, rather than as a whole tooth. Teeth fractures are apparently not uncommon for people with Th1 disease so that is another symptom to add to the list. His new teeth will be nice and strong now that he is on MP.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Sun Mar 19th, 2006 04:28 |
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The dentist saw no problems with Matt's teeth - apparently 10% of kids lose their teeth in pieces anyway so it is not a problem. The rest of the tooth has fallen out now so all is well.
Matt has started reading a novel for school this week. It is a bit baby-ish according to Matt (compared to what he has been listening to over the past year!) but OK. He then has to write an essay on it and hand it in for marking. He is very excited to be doing some school work again - even if I have to type it for him, he is determined to get it in. Matt also logged on to his email for a couple of minutes this week. He found typing a bit too hard but could at least look at the screen for a couple of minutes without too much trouble. So he is still progressing well.
Matt is anticipating a good week because he is over the worst of the herxing for the current lot of abx. He is very cheerful and enjoying being able to do more things.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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BARNEY
Moderator
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Posted: Sun Mar 19th, 2006 06:01 |
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Robyn/Matt,
HANG IN THERE, WE WILL MAKE IT!!!!! GRANDMA 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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robyno
Member in Phase 3
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Posted: Sun Mar 26th, 2006 04:51 |
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Thanks for the cartwheels, Barney - Matt can take a look at them now and he is very impressed.
Matt has had a good week with Grandma Bett staying with us for a couple of weeks. This week his big news is that the periods of blurred vision that he gets every morning as regular as clock-work are starting to improve. That is HUGE and something else to add to the list of improvements. His reading and TV watching are still about the same as they've been for the past couple of weeks but we are not pushing it. Everything will come together eventually, we just have to take it slowly......
Matt is looking forward to the end of daylight saving and the start of some cooler weather so that he can enjoy some fresh air before bed and not look such a doofus when he goes out in his balaclava, etc. He is expecting to feel well enough to see his footy team play a few games later in the year as well.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Thu Apr 6th, 2006 01:04 |
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Sorry it has been so long between posts. All is well here and Matt continues to improve. The weather in Canberra is unseasonably cold at the moment and Matt and I are shivering because our heating is not working and we are having trouble getting someone out to fix it. Never mind - it's only a small thing in the grand scheme.....
Matt is in the middle of his worst herx days after his abx ramp-up, but still pretty cheerful. His tic is definitely improving (by 60%, according to Matt, so the pains that produce the tic have really slowed down). He can now write pretty well and is working on his school assignment on his better days. TV is still stuck on 6 min (he is watching Carlton's big win last weekend in 6 min bursts!). He spends lots of time on the phone to his friends and a lot less time in his room. It is so lovely to see him getting his life back...
Cheers, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Jeannine
Board Staff
| Joined: | Sun Aug 28th, 2005 |
| Location: | USA |
| Posts: | 947 |
| Status: |
Offline
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Posted: Fri Apr 7th, 2006 05:19 |
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Hi Matt and Robyn,
I love reading your posts! It gives me so much hope! I am so glad your son is getting his life back.....I am rooting for you Matt! Go Matt Go ....Wish I had cart wheels like Barney....Go Matt Go!......
Jeannine
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CFS FM Lyme Morgellon's Depression/Anxiety 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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robyno
Member in Phase 3
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Posted: Fri Apr 14th, 2006 10:52 |
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Thanks for your good wishes, Jeannine!
We are having a good Easter break so far. A few of Matt's friends called in to see him today and he managed his visitors very well. We also upped his abx after lunch so the herx came on cue, at about 4.30 this afternoon. It will be a "good one" according to Matt, but not unbearable.
Matt started drawing this week so that is something else to add to the list. He is also sure that his "pulses" (ie tic) are still improving - about 75% better at this stage. It will be so nice to see the back of those.....
I have had a nice afternoon catching up on MP.com and printing off a lot of lovely articles on vitamin D metabolism, so I am heading to bed for a read. The Easter break has come just in time......
Happy Easter to everyone,
Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Mon Apr 24th, 2006 07:26 |
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Matt's progress is slow but steady. He sent me out to the letterbox for the junk mail this afternoon - it is so nice seeing him pouring over it working out what he is going to buy once he's better. One of those portable DVD players seems high on his list as he can list every store that sells them, how much they are going for and what features you get for your money. It wasn't so long ago that he couldn't even look at the catalogues!
We ramped up his abx again today so the herx will kick in at any moment. He gets a bit quiet when that happens and spends more time in bed, but after the first couple of doses he is more cheerful and lively again so it's not too bad. He has come a long way since starting MP, though we know he has a long way yet still to go.
We would all love to be at the LA conference and will be anxiously awaiting the DVDs. It's nice to think that some time in the not-too-distant future this family can make a trip like that again. I hope there will be more conferences!
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Sat May 6th, 2006 12:30 |
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Big news here this weekend - Matt's tic (ie his involuntary "pulses") are just about gone! A couple of weeks ago Matt measured the time interval between pulses at 15 min (not so long ago they were every 30 sec or so) and last Thursday he only counted about a dozen for the entire day. Today the count was about six - it won't be long before he goes a whole day without a pulse and then the celebrations will start! It has been very scarey watching Matt develop the quite violent myoclonus about 18 mo ago, and then have it develop into the head-holding scream, and then the very loud grunts, and now the soft grunts - it is hard to comprehend that they are almost gone now, but they are!! It is such a relief.
I read in Dawn and Michael's post that Michael is in good spirits and taking an interest in his appearance again. Matt is in amazingly good spirits as well - the boys know that they are getting better and it is wonderful to watch.
Matt has started another assignment (story-writing, which he loves) and is doing one of his last year's Maths assignments. He seems to be enjoying it. I was silly enough to tell his teacher that he found the last book on his reading list a bit little kiddish so she has sent him home Shakespeare's "Merchant of Venice"!! He is not impressed and is taking a ribbing from his brother. It might be a good idea to track down the audio version of the one!
That's our news for now - I will be sure to report when we can tick off those awful "pulses" just as soon as it happens.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Frans
Member in Phase 2
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Posted: Sat May 6th, 2006 15:23 |
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Robyn,
This is absolutely great news ! Congratulations !
Sincerely, Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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