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ElizaH
Member
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Posted: Mon Oct 30th, 2006 05:30 |
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Dear Matt and Robyn
You are good news these days. I'll pass your thanks on. Melinda is most interested in your progress. I think daylight 'saving' is a total blot too. More like 'darkness robbery'. Let's go neutral and call it 'summer time'.
Keep up the good work.
love ElizaH
Last edited on Mon Oct 30th, 2006 05:32 by 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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robyno
Member in Phase 3
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Posted: Sun Nov 5th, 2006 05:05 |
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Wed-Fri this week Matt's immune symptoms kicked in so he had another quiet week. He fell off the deck on Tuesday night while horsing around with David - he landed on his feet but it was a bit of a jolt to his poor head as the deck is a metre or so off the ground. He was still feeling the effects the next morning so it is no wonder that he hasn't tried to do any running yet. I'm still amazed that he can do so many exercises but sit-ups and stretches don't seem to jolt his head and he can handle it. He occasionally gets a bit dizzy if he over-does the exercises but he won't be talked out of them. I guess we have to trust his instincts.
I forgot to say a few weeks ago that we measured his height and he had grown 4 cm since the end of July. His weight is still about 40 kg though, so it's like he is being stretched! I think the exercises are his attempt to put on a bit of muscle....
Last night was another first - we went for a walk around the block all together! We took the shortest block but Matt managed really well and every block we walk is up hill on the way back. Those exercises are paying off! I'm sure we will be doing a lot of walks in the dark as the summer progresses.
Matt has three afternoons of school planned for this week - it seems like one week in three his symptoms are not flaring on weekdays so he is determined to make the most of them and get to school as much as possible. He is working pretty well on his assignments at home and is enjoying being able to do them, especially on the computer. He has started giving his brother advice on how to make his powerpoint presentations more interesting - eg wouldn't he like Matt to make his words go up in flames or wouldn't he like to fire a cannon in the top righthand corner? He's beginning to sound more like the Mattie of old.......!
Enough from us for this week,
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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Aussie Barb
Member in Phase 3
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
| Status: |
Offline
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Posted: Sun Nov 5th, 2006 17:04 |
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Robyn
Thank you.. so good to see Matts progress each week as you post..
This FAQ may be helpful: Are there any Guidelines on Exercise & the Marshall Protocol?
all best, Barb ...
go get 'em.. 
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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robyno
Member in Phase 3
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Posted: Sun Nov 19th, 2006 08:47 |
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Thanks Barb. It was great to be able to talk to Trevor with Matt about his progress and meds last week. Trevor suggested that Matt shouldn't do quite so much exercising all at the one time, particularly exercises like sit-ups, which are pretty strenuous. Matt took it on board and is doing a bit less, but he enjoys his exercises so much that I doubt that he will cut back very much. He is keeping quite an eye on his muscles (lack thereof!) and is determined to build them up. We'll keep nagging......
Trevor also told Matt that if Dr agrees he can chew half a Benicar tablet when he feels giddy or nauseated or his immunopathology is particulary tough. Matt is still taking only 20 mg Benicar q6h so he has plenty of scope to take more than he is taking. We'll see how he goes and try to get him to have extra with his next cycle.
Matt is still enjoying his afternoons at school when his immunopathology allows. Last Friday when I asked him how it went he replied that he had had so much fun. He made a clay elephant in his art class and had a ball. Matt's school is more concerned with him joining his classes and interacting with his friends than giving him loads of catch-up work, which is extremely sensible and definitely the right thing to do. His tutor is catching him up with maths and the rest will come with time.
Matt is now watching TV and using the computer whenever he feels like it - gone is the timing of every minute with his eyes on a screen. It is not an issue any more. He can also lie down for short periods of time, something we have just noticed. He also goes to bed later now, which means that the fatigue is gradually lifting.
So Matt's progress is steady.
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 Dec 3rd, 2006 09:43 |
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Apologies for not posting sooner - Christmas shopping has been eating into the weekends of late and I seem to be constantly running.
Matt continues to improve with every antibiotic cycle. He is very busy these days, something he said a while back that he was looking forward to being once again when he was through his illness. So I guess his wish has been granted a bit sooner that he expected. He has a couple of assignments to hand in this week and a whole lot of Christmas bon-bons to make (he has been planning these for some time - he thinks he can do much better than the ones you buy in the shops, so it will be interesting to see how they turn out). He is very disappointed that school is finishing soon, quite a turn-around from the way he used to feel about this time in the school year. Somehow I don't think he will ever complain about having to go to school again..................
School or no school, we are going to have a great summer this year, even if it just means going to the movies or watching a movie at home as a family. It's been quite some time since we have been able to do things like that. And of course we can go to the beach now that Matt has his wet suit and invisible zinc cream. So roll on the holidays!
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 Dec 3rd, 2006 19:03 |
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Robyn...it is so great to hear how good Matt is doing and all he is accomplishing.
I bet this is going to be the best Christmas at your house ever.
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: Wed Dec 13th, 2006 09:55 |
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I think you are right, Barney!
School has finished for the year and Matt again managed to get all his English assignments handed in and his exam completed. We'll pick up his marks in the morning. He did a few other assignments and tasks for some other subjects and still does his maths with a tutor at home, so he will keep doing that through the long holidays. Hopefully he'll have a few outings with his friends as well.
John and I had our lab Christmas party here on the weekend and Matt managed to keep up with everybody and join in the party. He was very tired afterwards (me too!) but didn't miss a beat. He really has come a long way since last Christmas. He is also making Christmas bon-bons for the extended family and they are turning out beautifully. On Saturday he helped John and David decorate our Christmas tree, whereas last year all he could manage was to supervise (though he is very good at that!). He won't be left out of anything this year, that's for sure.
Until next time, 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 Dec 24th, 2006 09:14 |
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This is just a short post to wish everyone a very merry Christmas. We are just so lucky - Matt went to Mass with us tonight for the first time in three years and it was just wonderful having him with us. We are not looking back now. He is joining in everything and is so excited about Christmas he is ready to burst.
So many thanks once again to Trevor, Barb, Meg, Belinda, all the other moderators and all our fellow MPers - we have our boy back and have made lots of friends. Life is good.
I know there are a lot of MPers doing it tough this Christmas and we are thinking of you. Life will get better for you, too - just hang in there.
Love to all, Robyn, John, David and 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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robyno
Member in Phase 3
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Posted: Mon Jan 1st, 2007 03:10 |
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Happy New Year everyone!
We have had a wonderful Christmas. Matt got a new LCD TV with built-in DVD player for his room, which is a step up from the audio books that he used to get because listening to those was about all he could manage to do for so long. He was in the thick of everything and really enjoyed having family visit from Melbourne.
On Saturday night the four of us went to the movies together for the first time in over two years. We saw "Happy Feet" and Matt nudged me halfway through and said how glad he was that he didn't eat fish any more (you will have to see the movie to understand that one!). We had a great time and really appreciated being able to do things like that together again.
Matt's headache is improving greatly and he can barely feel it anymore when he is going to sleep of a night. That is big progress so we are expecting the headaches to be the next big symptom to disappear..................it will be interesting to see how long that takes from here. Matt's light sensitivity has also improved (eg with his invisible zinc cream on his hands and face, he can manage to go outside for short periods now with his 10% glasses rather than the 2%) and he is staying up for longer at night.
That's our news for now.
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: Mon Jan 15th, 2007 09:03 |
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Matt had a real treat last night - after dark (~8.30 pm) he went over to a friend's place for a swim in their backyard pool. He didn't have to worry about glasses so he was able to dive under the water freely. Matt loves swimming and that is the first real swim he has had in over 2 years. Last year he would have been in bed long before dark and he wouldn't have had the energy to stay in the pool for an hour like he did last night. He was all smiles when I picked him up. Matt said that it made a difference being able to lie down now - it wasn't that long ago that he couldn't lay down at all. He seems to be ticking off symptoms at a great rate.....last week he was able to jog just a little without it hurting his head too much.
We are off to the Coast for a couple of weeks this Wednesday so I won't be able to post while we are away. Then it will be time to get ready for the start of the school year, so it will be interesting to see what that brings.
Until next time, 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 Feb 3rd, 2007 04:44 |
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We had a great couple of weeks holiday at the Coast. We have managed to convince Matt that the invisible zinc cream won't come off when he swims (he really has to scrub with shower gel to get it off in the shower) so he let David hold his glasses and hat a few times while he dived under the water, eyes shut tight. He had a ball. The only time he had a sleep during the day was after his swim or other outings, and that was only for an hour or so. We had some long walks along the beach as well. He can also run a bit now and only needs his 10% glasses when he is outside in the sun. He just keeps getting better and better.
School starts next week so we will see what he can manage this term. We will visit his teacher on Monday and sort out the best way to get him started.
Till next week, 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 11th, 2007 04:11 |
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Matt has had a huge week, with school starting back last Tuesday. At the end of last year the most school that Matt had managed was three half days - ie Mon, Wed and Fri at lunch time, in a non-IPR week. Well, he went to school at recess on Tuesday, at lunch time on Wed, at recess on Thurs and at lunch time on Friday!! So it was 4 days in a row and on 2 of those days he was at school mid-morning. Luckily he didn't start his IPR till Friday afternoon so the week was pretty much IPR-free. Not all weeks will be like that and he will have to pace himself, but he is off to a great start.
Matt gave us a bit of a fright on his first day back at school. When he got home he passed right out on the family room floor and scared the crap out of his brother (David uses colourful language at times!). It was a hot day and he had been pretty pumped up to be back at school, and he told us later that he had joined in on a basketball game at lunch time, just for a little while (!!). So we managed to convince him to take it easy at lunch time and use a bit more invisible zinc cream so that he doesn't have to wear a long-sleeved T-shirt under his school shirt, and he did much better for the rest of the week. He has been very cheerful all weekend, though he hasn't wanted to go out anywhere. He would prefer to pace himself fo the next week at school.
So the school year is off to a great start, and it will only get better from here as Matt keeps improving. He has a long way still to go, but has come a long way already.
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 18th, 2007 04:12 |
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Matt has had another great week at school. He is keeping up with three subjects out of nine (ie English, Maths and History) and will increase his workload as his fatigue and headache lessen over the coming months. So far he hasn't missed a beat and is loving it. No way will he ever complain about homework and assignments again!
One thing that worries us a bit is that he has missed so much school that he doesn't really know where his interests and/or talents lie yet. For example, he hasn't been exposed to much science yet so we hope he can pick that up in the next term or so. At the moment he thinks science is for nerds like his Mum and Dad but I'd hate him to give up on it before he has even begun! I guess it is the same for lots of things and he still has plenty of time to work out what he likes doing. He'll get there in the end.
Matt is now down to only one paracetamol tablet per day, from three at the height of his symptoms. His headache is so much better - can't wait for the day when he wakes up and says, "Guess what - it's gone!!" We won't see him for dust then!
Till next week, 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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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Feb 18th, 2007 04:18 |
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Hi Matt, Good to hear things are going OK 
Robyn, remember that "any sufficiently advanced science is indistinguishable from magic." You and John are soooo far advanced in your careers that poor Matt must have trouble figuring out beginning, middle and end. He has plenty of time to figure out which way is up, and which is down. Right now I suspect that it takes all his energies just settling back into school, and making new friends
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robyno
Member in Phase 3
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Posted: Sun Feb 18th, 2007 23:02 |
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You're right, Trevor - I am just being a "worry-wart"! Thanks to you and the MP Team Matt has a whole life ahead of him to do just what he wants.
Thanks, 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 4th, 2007 03:44 |
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Matt has had a good couple of weeks at school. He seems to go to school regardless of his IPR and is taking things in his stride. He joined in a lunch-time cricket game one day this week- he had a few bats and one of his friends ran between the wickets for him and he said it was lots of fun. He has started to run himself a bit now so it won't be too long before he is doing his own running between wickets! His teachers say that he is looking better and better each day.
On Friday night we had another family over for dinner and Matt stayed up until well after his normal bedtime. He joined in all the fun and his illness was hardly discussed or noticed. I saw it as a real turning point for Matt and the rest of the family, to be just about normal again (at least when the sun went down!).
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: Tue Mar 20th, 2007 10:10 |
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Highlights over the past couple of weeks have been some great games of cricket at school and having a friend over on the weekend. He kept up with his friend very well, playing table tennis and kicking the footy and watching movies. Just like a normal kid! Another big highlight was that a good friend set up the TV in his room to receive pay TV - boy, was Matt pleased about that! Now when we can't find the remote we know to look in his bed!
Matt went up to the next level maths class a couple of weeks ago and is struggling to catch up on all the new work. His tutor is putting in some extra time with him so he'll get there eventually. I am glad he is only doing three subjects as keeping up with all the homework and assignments is tough. When he goes to school he needs to rest when he comes home so it doesn't leave much time for homework except for weekends and the odd day at home. We try to keep him from worrying too much about it and to go easy on himself. Getting better is the number one priority.
Until next time, 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 Apr 1st, 2007 10:52 |
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Matt's maths problems evaporated somewhat when we realised that he and his tutor were working from the wrong syllabus and he was trying to catch up on maths that his class won't be doing until next semester! He is very relieved, to say the least!
Matt seems to be cruising. He commented last week that he doesn't have many dizzy spells any more, but then had a few at school the next day! But he still maintains that he has noticed an improvement in that regard. Yesterday he complained of nausea during his maths tutorial and I realised that that was unusual as well. Matt has battled nausea throughout his illness and I hadn't realised that he had stopped complaining until yesterday. He doesn't have bouts of nausea every day anymore so yesterday was out of the ordinary and noticeable. It didn't last long and he hasn't complained of nausea since.
Yesterday was a big day in other respects as well - it was the start of the footy season here. David played his first game for the season and at three quarter time I realised that I didn't have to call Matt at home to give him the score and tell him how his brother was playing. He was right there at the game with us. In fact, he and his mate Johnny were the official score keepers and had the important job of posting the score for all to see. In between quarters the pair of them were out on the ground kicking the footy to each other - gee, last season he hardly went to a game! And then we went out to dinner in the evening and it wasn't a problem. Matt sure is enjoying having his life back!
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 19th, 2007 07:40 |
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Matt continues to go from strength to strength. He had his first real cold since his illness began - it lasted a week or so but he is over it now. He needs much less rest during the day than he used to and he's not turning in for the night until ~10.30 pm. One night last week he stayed up even later finishing off an English assignment and it wasn't a problem, though he slept late the following day. But it was a good effort.
Next week we are off to the Coast for the second week of the school holidays. Driving the ~3 hr to get there is no longer a problem for Matt and he is looking forward to it. We all are.
At our Dr's visit this week Matt measured in at 159 cm (he's growing a cm a month at the moment) and 40.6 kg ie he is a skinny kid who can't seem to put on weight. His appetite is good (he's starting to make himself toast about an hour after dinner in the evening) so it will start to happen soon. He says that he's in no hurry to "grow up" as he's not done with being a kid yet. That's understandable.
I'll report on our week at the beach when we get back.
Take care all, 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 Apr 30th, 2007 13:44 |
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SUCH WONDERFUL NEWS ROBYN/MATT. KEEP UP THE GOOD WORK MATT.
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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