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ElizaH
Member
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Posted: Mon Aug 14th, 2006 07:36 |
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Dear Matt
HAPPY BIRTHDAY
It was great to hear how well and strong you sounded when we spoke yesterday. I look forward to copying you.
Love from ElizaH
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Fatigue/nausea/skin late98 Uveitis+Glaucoma, dx Sarc dx 3/99, breathing probs 5/05: NOIRS 3/05: oxygen 24/7 5/06: 15Mar05 1,25D=80.76, 25D=13.2: Votum 40mg q6h 24/11/05 Phase1 12/05-4/06 Modif Ph 2 13/4/06
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Frans
Member in Phase 2
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Posted: Mon Aug 14th, 2006 07:54 |
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| HAPPY BIRTHDAY MATT !!
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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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BARNEY
Moderator
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Posted: Mon Aug 14th, 2006 14:06 |
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HAPPY BIRTHDAY MATT!!!!!!!!! 
(Just got my computer back on line, hope you have a wonderful birthday celebration....you deserve it).
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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wrotek
Member in Phase 3
| Joined: | Fri Dec 31st, 2004 |
| Location: | Wroclaw, Poland |
| Posts: | 1163 |
| Status: |
Offline
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Posted: Mon Aug 14th, 2006 18:51 |
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Lyme reflux chronic pain fatigue depression 125D36 Ph1Sep05 Ph2Oct06 Ph3Apr07 homebound in low lux NoIRs 25D<7 Oct06
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robyno
Member in Phase 3
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Posted: Tue Aug 15th, 2006 01:50 |
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Hi this is Matt. Thanks for all the happy birthday wishes. how are you all doing? I'm doing a bit better than I thought I would. Keep on keeping on   A big thanks to Doctor Marshall, Aussie Barb, and Barney. THANKS FOR EVERYTHING.
Matt
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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: Tue Aug 15th, 2006 14:01 |
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Matt........is that really you? Oh, Matt, that is fabulous. I am so happy for you and for the hope that your family must feel.
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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Grace
Member in Phase 3
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 396 |
| Status: |
Offline
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Posted: Wed Aug 16th, 2006 08:00 |
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Matt,
So great to hear from YOU.!!!!!!!!!
Happy Birthday!!!!!!!!!!!
Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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robyno
Member in Phase 3
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Posted: Fri Aug 25th, 2006 06:46 |
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Thanks everyone for your birthday wishes. Matt had a great party last Sunday night. He invited 5 friends over for a BBQ - he arranged everything, including the menu (which his Mum and Dad cooked!), and told the rest of us to make ourselves scarce. There were lots of laughs coming from the family room and he managed to last for an hour and a half before we took his friends home. He was a very tired boy afterwards!
It's interesting that Matt and his friends have grown up quite a bit without us noticing! Matt has definitely lost a few inches in height as a few of his friends who were always about the same size are now a few inches taller. Never mind, he will catch up with all that weight training and food he is eating now (Dawn - we must have a talk about food again and I'll tell you Matt's favourite things to eat to see if Michael might be tempted.......).
The other thing that Matt is excited about is the invisible zinc cream that Joyce has discovered (thanks Joyce!). We have some now so Matt thinks he will try it out on the weekend when he stops herxing - will report how he goes in the zinc cream thread.
Matt's tutor has been a great success and Matt is starting to do more school work on the days he is not herxing. So all in all things are definitely looking up.
Regards, Robyn
PS Apologies for not posting sooner - it is very difficult to get on the computer of a night at our place right now (we definitely need another one for the boys!)
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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 Sep 3rd, 2006 06:15 |
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Matt seems to be improving steadily since starting Phase 2. Every time he stops herxing we can see that he is a bit less fatigued than the time before and his headache is much better than it was. This week he even cut out his nightly paracetamol tablet so he is down to two a day. It will be interesting to see if he asks for panadol tonight, on a herx day.
Matt has also started playing table tennis after dark each evening, something that he hasn't done for the past couple of years.
Right now he is struggling with swollen gums that we are a bit worried about. He also has a rash on his neck that we can't account for. They are probably both just herxes, like everything else......
Other than that all is 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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BARNEY
Moderator
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Posted: Sun Sep 3rd, 2006 06:32 |
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Robyn (& Matt),
So good to hear that you are doing so well Matt and Robyn it's great to see that you catch on to things so easily....I wish everyone considered everything a herx like you do.
We are going to make it Matt. I actually was able to take Granny shopping yesterday, pick up her pills, go to her house for a 2 1/2 hr nap and back out again to finish our shopping at the other grocery about 5pm and I was not sick, achey....just a little tired. Also, went to bed early since the electric was out due to a storm....what else is there to do without electric....but get the much needed rest we need with MP.
HANG IN THERE, WE WILL MAKE IT!!! BARNEY
____________________
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: Sat Sep 16th, 2006 12:04 |
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Apologies to all our friends for being so long in posting on this thread ........... sometimes weekends just aren't long enough!
Our big news is that Matt is going to school for an afternoon next Wed for the first time in a year (yes, it has been a year since Matt started MP!)!!! He is definitely ready and very excited at the prospect. We'll see how it goes - there are only two weeks before the end-of-term break so if he can go a few times before end of term we'll have some idea how much he might be able to manage for the final term of the school year. The way he is steadily improving on Phase 2 gives us a lot of hope that he will be able to catch up quite a bit in what is left of Year 8. We'll just have to see.
Matt said that a year ago he would listen to about 11 hours of audio books in a day (ie in bed) and now it's down to about 4 hrs - the rest of the time he is doing homework, working with his tutor, exercising, watching TV (he can manage almost an hour now), messing around on the computer (~ 25 min at a time), playing table tennis after dark, drawing, eating, listening to his MP3 player.......I'm sure I have missed a few things. He even gets out and about occasionally now, using the invisible zinc cream to cover his face, neck and hands. Tomorrow he'll come with us to watch David play footy and sit with his friends and generally be one of the boys again.
So the news is all good around here.
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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jrfoutin
Research Team
| Joined: | Tue Aug 9th, 2005 |
| Location: | Oregon USA |
| Posts: | 3924 |
| Status: |
Offline
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Posted: Sat Sep 16th, 2006 12:39 |
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| That is so fantastic! Congratulations!
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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, 10/08 25D6.9
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robyno
Member in Phase 3
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Posted: Sun Sep 24th, 2006 07:39 |
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Matt survived his afternoon at school and will go again next Wed. He was so excited beforehand he was shaking! Apparently he did a lot of walking around checking the place out and seeing what was where, so next week it should be a bit easier as he will stay in one place and get on with his work. He just loved being a normal kid for a while, and nobody gave him a hard time about the glasses.
Last night was another first in that Matt went to the video shop to hire some DVDs. He can watch about an hour and a half now so he can just about see a movie in one or two sittings. Great progress! His ambition is to be able to go to the movies with his sister, Claudia, when she comes to visit in a few weeks time. Next week we hope to head down to our beach-house for the first time in a year - won't that be something!
Matt's improvement is steady and continuing and life is pretty good (and getting better all the time).
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 Sep 24th, 2006 23:39 |
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Matt & Robyn,
It is so good to hear that Matt enjoyed and endured a bit of time of school. I know that made his day because I know how it makes me feel when I accomplish anything I have not been able to do.
As a mother, I also know how your heart must be leaping for joy, Robyn, as you watch Matt recovering on MP.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
____________________
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 Oct 1st, 2006 05:39 |
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Matt has had another good week. He went to school again on Wed afternoon and handled it well, though he needed a sleep when he got home. He spent ~40 min on the computer at school researching a science assignment and was very pleased with himself. It is so nice to see him enjoying a TV show these days and being able to use the computer a bit now.
Late this afternoon we are off to our beach house for the first time in a year so we'll be off the air for the next 10 days or so. We have been to the dive shop for wet suit, "booties" (matt just hates that name!), gloves and the most fantastic hat I've come across - it is wide brim all around, waterproof, has a covering for the ears and it does up under the chin so his glasses will be nice and secure (the brand is "Ocean Earth"). Add in a little bit of invisible zinc and Matt is also set for a romp in the surf. He's more than a little bit excited!
Has anyone come across any suitable swimming goggles? In the summer it would be great to be able to take him to our local pool after dark, but the lights at these places are very bright & I don't think he would be able to handle it.
Matt is also managing about an hour of exercise (not continuous!) on non-herx days now, and this week that has included 60 sit-ups in a row, without stopping! It wasn't so long ago that he couldn't even lie flat! I wish I could do that........
Now we just have to get thru the almost 3 hr car drive with lots of stops and an audio book in the CD drive.
Will have lots to report when we get back home. Until then.....
Regards, Robyn
OCEAN EARTH << click
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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 Oct 1st, 2006 05:52 |
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WOW MATT........YOU GO!!!!!!!!!!
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
ps I am able to do a lot more also Matt....isn't it just toooo good to be true?
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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 Oct 15th, 2006 11:09 |
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We had a wonderful 9-day holiday at our beach-house. Matt handled the car trip really well - we stopped 3 times each way but not for as long as I remember a year ago. We went out for dinner twice (Matt just loves the wood-fired pizzas at our favourite Tarthra restaurant) and Matt giggled his way through most of our outings. As a family it is wonderful to have our trips down the coast re-instated. It is very relaxing for all of us and John and I get to spend time working in the garden and getting lots of exercise.
The wet suit, gloves, booties and hat (Barb found the EXACT hat above - it's a beauty!) worked a treat and Matt went swimming twice once his herx days had finished. David nearly froze to death swimming along side him but they didn't stay in the water for very long. The invisible zinc cream seemed to work very well as per usual and didn't wash off easily in the water (Matt had to really work at it in the shower afterwards to get it off).
It is interesting that Matt can go outside now at dusk, about 10 min before it gets really dark. He doesn't even wear his glasses then - he just looks all around and comments how beautiful the world is. I really think this illness has changed him forever - there's no way he'll take anytrhing for granted again!
Next week he has two days of school and two days of tutoring all lined up. It will be a big week. He is still doing lots of exercise, even on his herx days.
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 Oct 22nd, 2006 06:00 |
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What a busy week Matt has had! His herxing had disappeared by Monday morning so he had his two afternoons at school and his two sessions with his tutor in between. On Friday afternoon he actually joined a couple of his classes - everyone made him feel welcome and he had lots of fun. He'll start doing that more and more from here.
And last night Matt even went to the movies with one of his mates!! It wasn't a long movie and Matt said that he closed his eyes for about 10 min in the middle, but he made it and had a great time! He checked out that the popcorn didn't have any margarine on it so he was able to enjoy a bucket of popcorn as well (while John, David and I sat at home watching the clock!). Just something else to enjoy now.............
It will be a quieter week this week as Matt will be herxing Mon-Wed, but he'll get to school by the end of the week and who knows what the weekend will bring!
Regards, Robyn
____________________
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 Oct 29th, 2006 10:48 |
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Matt had a much quieter week. His flare in symptoms made him very tired and he didn't exert himself too much Mon-Wed. He is able to watch TV now and play the playstation so his list of things to do when he is tired has increased considerably. He still loves his audio books but doesn't have to spend so much time in his room. He'll also manage some exercise but doesn't push himself quite so hard.
Matt loved his afternoon at school on Friday and will go again tomorrow afternoon. He seems full of beans once his symptoms settle down though an outing to the shops for a couple of hours this afternoon wiped him out for a while. The good thing is that now he only takes and hour or two to recover once he gets home so we notice his improvements all the time. He is very cross with the onset of daylight saving - it puts an end to his games of table tennis with his brother before dinner and he is a bit too tired after dinner. We are scratching our heads to figure out where to put the table inside.....
That's our news for this week,
Regards, Robyn
PS A message for Melinda (ElizaH's niece) - we got the swim goggles that you suggested this afternoon and will try them out at the local pool one night once summer comes - thanks for that!
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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 Oct 29th, 2006 14:28 |
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Matt/Robyn,
I am not quite sure who is the most knowledgable...Matt or Robyn.
I am so proud of you both for doing MP so great and for Matt knowing when he has to quit and rest. So happy for him to attend school again and the fact that you were all able to go to your holiday home again.
Robyn, please convey my thanks to John and David as they are so patient with the MP patient (Matt) and have to take a back seat a lot to this miserable disease and for the extra love they show their son/brother.
All of you, take good care of you.
HANG IN THERE, WE WILL MAKE IT!!!! GRANDMA BARNEY
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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