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robyno
Member in Phase 3
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Posted: Sun May 13th, 2007 03:05 |
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We had a great week at the beach, thanks to invisible zinc cream and the MP! Lots of lovely walks along the beach, saw a seal with a fish in its mouth and also a pod of porpoises (think that's what you call them) having a fun time at Tathra Beach - there must have been about 80 of them!
School has started back and Matt has not yet increased his work-load, though we'll think of doing that next term I think. Matt is pleased that he can run now without his head hurting so it won't be long before he volunteers to be his footy team's official runner!
Yesterday Matt had a huge day. We dropped him off at his school in the morning so that he could watch his team play, but then afterwards he went to the movies with a couple of his mates, Benicar and mobile phone in his pocket, and didn't get home until just before dinner! He was so tired but very cheerful and said that he had had a wonderful day. And yesterday was his worst IPR day of his cycle - we are amazed at what he manages to do now.
That's our news for now. Next time I'll be able to report on our time with Meg - we are really looking forward to meeting her.
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 May 27th, 2007 03:58 |
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We had a great visit with Meg and her husband and some of the other Canberra MPers and their families. The MP family is certainly a great one to belong to! The kids (Matt and Grace's d1 and d2) were a delight to be around. They look so well now and have a great time and lots of laughs when they get together. David commented afterwards that it was strange in that it was both a happy and sad evening - sad that illness had brought us together but happy that the MP is having such a positive effect on all of us. Many thanks to Meg and T and the other MPers for making it a night to remember.
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 Jun 17th, 2007 06:57 |
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I get the feeling that Matt has made great strides in the last few months. In April, at the end of the first term of school, Matt was in no hurry to increase his work load of subjects. Now, at the end of June, we have been to see his teacher about DOUBLING the number of subjects that he is taking, and he just can't wait until next semester starts so that he can get stuck into them! He has also started guitar lessons of a Friday night, whether or not he has had a day at school before hand. The fatigue seems to be lifting quite markedly and he is not resting in bed during the day at all.
Another thing we have noticed is that he only using the 40% NOIR glasses now, no matter how sunny the day is. At lunch yesterday he announced that I could take the black plastic off the windows at the front of the house (these windows get the morning sun only). I didn't need to be told twice and had a lovely time in the afternoon removing all the plastic and dusting all the window sills and light fittings (there is a good side to covering up all the windows..................). Today he has decided that he might have been a bit hasty, but we'll see how it goes. The house is still quite dark, just not pitch black. If it bothers him too much we'll put some back.
I'm sure that I had something else to report but I can't remember what it might be - if it comes to me later I'll log back on. Matt's exams start this week so that will keep him busy for a while, then it is school holiday time again.
Till 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 Jul 14th, 2007 00:11 |
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1 year, 305 days since Benicar
We had our three-monthly doctor's appointment last night. Matt has grown 1.5 cm in the last 3 months and is now 160.5 cm. He has put on 1 kg and is now 41.7 kg. The lab forgot to check his 25-D levels (!!) Matt is spending a lot more time outside, albeit smothered in invisible zinc cream) so it is important to keep checking it.
We figure that, symptom-wise, Matt is about 80% recovered. He doesn't go to bed during the day at all now and packs a lot in. Even his head-ache is nor bothering him too much now. He can run now and even hopped on the trampoline for a few minutes yesterday (and felt a bit "weird" afterwards), something his poor head has not let him do for almost three years now. Driving doesn't worry him any more. He is about to double his subjects at school and go every day, albeit he won't be there for the first period. But he will be there for most of the day. His light sensitivity is showing great improvement - he can look at the computer screen for a half hour or so without any glasses at all. He never uses his 10% or 2% glasses now, even outside.
Really, there's not a lot he can't do now. His biggest problem right now is trying to figure out how he can convert a DVD into MP4 files so he can put his favourite movies on to his new iPod video!
We are off to our beach-house today for six days or so - will post in the other thread when we get back.
Best wishes to all, Robyn
PS Matt sends a 
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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
Member in Phase 3
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Posted: Sun Jul 15th, 2007 02:22 |
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Robyn/Matt,
What wonderful news!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
HANG IN THERE, WE WILL MAKE IT!!!!!!!!!!!!!! GRANDMA BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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robyno
Member in Phase 3
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Posted: Tue Aug 14th, 2007 08:30 |
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My golly, it has been a month since my last post! Sorry to have been so slow but life has picked up a few notches since Matt is about 80% recovered and it's hard to shift him from the computer of a night now that he has a few assignments to get in on time. He doesn't ask for extensions any more..........
Today is Matt's 15th birthday! It is hard to believe that he is now quite a young man. He has a party planned for next weekend with about six of his friends. They will go to a movie then come back home for a BBQ and to generally hang-out. Last year he had a few friends over for an hour, after which time he sent them home so that he could go to bed. Not this year!
We have all been very busy for the last month. We had a week at our beach house over the holidays and Matt was able to help in the garden like he used to do before he was sick. We had some lovely long walks along the beach as well. Then a couple of weekends ago we all flew down to Melbourne for the weekend to help my Dad celebrate his 90th birthday. We had a great time - even went to the MCG on the Saturday to see the Blues (Matt's and my team) play the Magpies (John and David's team) and really enjoyed ourselves. Matt screamed and barracked with the rest of the crowd and I had to pinch myself to make sure I wasn't dreaming. The Blues lost, unfortunately, but that didn't dampen our spirits. And Poppy had a lovely birthday.
Matt is now heavily into the second semester of school and really enjoying being able to do more subjects. Good to see him start some science at last, as well as multi-media. He goes to school every day, though for not quite a whole day. But mostly. He's almost back to normal. He and his mates play basketball every lunch time and he even runs during the game. It will be footy next, though I would rather he grew a bit more first.......
That's our news for now. Take care everyone,
Robyn
In a nutshell:
Matt started the MP when he was 13. Matt was so sick back then - it is hard even now to think about those times. Matt: starting questions.
Matt spent an awful lot of time during the day in bed. Listening to audio books was all he could manage. His head hurt constantly, he had this awful neurological tick that happened every few minutes, which also hurt his head, he couldn't bear to look at a screen, couldn't read or write, had periods when he couldn't see properly, and was very tired all the time and very light sensitive. I'm sure there were other symptoms as well, but they were the main ones. He didn't even like to get visits from his friends...........
Now, almost two years later, he has his life back. All that's left are a bit of a headache, a bit of fatigue and a bit of light sensitivity. We think he is about 80% better. He is back at school doing 6 out of 9 subjects and is loving every minute of it. He used to say that everything will be 10 times better when he isn't sick any more and that seems to be they way he is approaching life now. He is such a happy kid. And it has been wonderful for us to watch those symptoms slowly but surely disappear over time.
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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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P.Bear R.N.
Research Team
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Posted: Tue Aug 14th, 2007 16:44 |
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Happy birthday Matt! great news!
P.B.
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MCS, neuroborreliosis, fatigue, tinnitus, neck/facial/shoulder/lumbar pain, Bells palsy, Prostatitis, blurry vision, dizziness, 1,25D=48, MP2/05 MP3, cytomel, D25<5
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hrts4me
inactive member
| Joined: | Sun Oct 17th, 2004 |
| Location: | Texas USA |
| Posts: | 590 |
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Offline
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Posted: Wed Aug 15th, 2007 03:11 |
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Sounds like besides his first day of birth--this will be one of the best birthdays ever!
You go, Matt!!! Congratulations!
Hrts
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LYME COPD Arterioscl Seiz FM CFS Hypertens NASH HiChol/ 4.2cmKidneyMass&Stones HyperCaPhUria Angina Arryth SOB RadNeurop BiPolarI| 1/05 25D-14 1,25D-13 2/07 25-D14| Nitro Verapamil Hydrocodone Baclofen Dicyclomine promethazine clonazepam
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BARNEY
Member in Phase 3
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Posted: Sun Aug 19th, 2007 03:49 |
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Matt,
Hope you had a wonderful birthday this year!!!
I know this year (with the MP) had to be a sweet sweet time.
HAPPY BIRTHDAY!!!
I am very proud of you for how well you have kept with the MP and have improved.
HANG IN HERE, WE WILL MAKE IT!!! GRANDMA BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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robyno
Member in Phase 3
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Posted: Sun Sep 16th, 2007 16:00 |
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2 years, 5 days since Benicar
Golly - it's been a month since my last post. I don't know where the time goes. Matt is doing well. The improvements keep on coming. Matt usually goes outside for a half hour after dinner of a night so that he doesn't feel nauseated. He seemed to crave fresh air. Well, he stopped doing that a couple of weeks ago as he doesn't think of it anymore - the nausea appears to have stopped. He also rarely takes a paracetamol these days and doesn't reach for extra Benicar early in his cycle (on day 4 he always took 4 hr Benicar but doesn't seem to want it anymore). That B sure is good stuff! It's wonderful to go into his room first thing in the morning with his Benicar and see him lying down like a normal kid and not propped up on 5 pillows like he used to be.
So the only symptoms he has left are a bit of a headache, a bit of tiredness and a bit of light sensitivity. He now takes his glasses off outside for a minute or so if it is cloudy - it gives me the creeps but Matt tells me to stop worrying, that he is fine. But then he puts them back on.......but they are only the 40% glasses, he doesn't wear the darker ones at all anymore. And he rarely wears glasses inside anymore, even at the computer or to watch TV.
Matt had a wonderful birthday with his friends. Thanks to everyone for your birthday wishes. It was interesting to compare the photos I took this year with those I took last year, with the same group of friends. Last year Matt was so much shorter, but this year he had caught up quite a bit and didn't look like the odd man out.
Matt is coping well with school and keeping up with the work load. Life is so very good!
That's our news for now.
Best wishes 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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Joyful
Research Team
| Joined: | Sat Jun 9th, 2007 |
| Location: | West Coast, USA |
| Posts: | 531 |
| Status: |
Offline
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Posted: Mon Sep 17th, 2007 01:35 |
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When all the news is good news, then life is good!
Thank you for continuing to post updates for the encouragement it gives those of us who are just getting started (like me). 
Your comment...
It was interesting to compare the photos I took this year with those I took last year, with the same group of friends. Last year Matt was so much shorter, but this year he had caught up quite a bit and didn't look like the odd man out.
...really struck me as significant. That not only has the degeneration stopped and the healing occurred, but now growth is normalizing. Wow, the MP really is restoring it all, isn't it?
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Lyme Babs Bart - 125D50 Ph1Jul07 ModPh2Sep07 Ph2Feb08 Ph3Aug08 - cal/mag lysine hydroxyzine valium - rarely leave house NoIRs cover up low lux home - 25D17 Jul08
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robyno
Member in Phase 3
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Posted: Sun Oct 14th, 2007 10:33 |
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2 yr 33 days since starting MP.
Yes, the MP is restoring it all!
We have some big news to report this month - for the last couple of weeks Matt has noticed that his headache disappears completely for short periods during the day. He didn't say anything till last Thursday, when he announced that he went for a whole half hour or so without any noticeable headache. And this morning he woke up without it - and it didn't start for an hour or so after he got up. So at long last, those headaches that he has put up with for more than 3 years now are on their way out!! If they go the same way as his other symptoms then we would expect that, before long, the periods of headache-free time will increase daily until they are a thing of the past. We just can't wait!
After that all our other news is pretty insignificant. Matt has been on school holidays and has had a great time at the beach, helping us in the garden and bowling with his friends. He is starting to go for runs after dusk - he doesn't go far but is enjoying being able to run again. He is determined to join in training with his football team next season - that's still some months away so he will probably be up to it by then.
The only other thing to report is that we seem to have quite a large goanna living under our shed down at our beach-house - we were all quite excited to discover it and hope that it will still be there next time. We'll keep well out of its way, of course, but it was pretty neat to see it there. I hope they are good at scaring snakes away.......but that would be too much to hope!
Regards 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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BARNEY
Member in Phase 3
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Posted: Sun Oct 14th, 2007 13:50 |
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Oh Robyn and Matt,
It is so great to see you doing so well Matt....and Robyn, as a mother, I can just feel the joy with you. You have your son back.
I, too, Matt am doing well like you and I am sure you are just as thankful for all of TM's fine work to have found a cure for us.
HANG IN THERE, WE WILL MAKE IT!!!!!!!!!GRANDMA BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,04D's(53/25)05(52/
22),(32/10), Benicar (only) @3hrs + extra as needed. no abx since 9/15/07
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thaiboxer
Guest
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Posted: Mon Oct 22nd, 2007 15:58 |
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| NICE!!!!!!!!!
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Thai: CFS 7yrs Pneumonia Rickettsia FeverUO exercise intol, musc twitch fatigue/ Testost subling Jan: 1,25-D 65, 25-D 32/NOIR/Beni Comm Jan05 20mg 3hrs/2abx May05/Q Mar05/probiotics
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robyno
Member in Phase 3
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Posted: Sun Jan 6th, 2008 05:20 |
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Happy New Year to all!!
We have had a wonderful Christmas with our families in Melbourne (mine, just before Christmas) and Adelaide (John's, over Christmas). It's the first time in four years that we have been able to make the trip. Matt took it in his stride and had an absolute ball - driving in the car doesn't bother him at all now.
We think Matt is about 90% better now. His headache hasn't completely gone yet but on non-IPR days he is without a headache for most of the day. He is itching to go outside without his invisible zinc cream but we have convinced him to wait until the headache is completely gone and then try it for 20 min at a time, so that is the plan.
Matt has his life back. He goes out lots with his friends and doesn't miss out on anything much at all. He is planning a full year of school when it startes back in Feb. Matt will be in Year 10 and even has Advanced PE on his list of electives! I don't think there will be any stopping him now!
Warm regards to 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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robyno
Member in Phase 3
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Posted: Sun Jan 20th, 2008 06:30 |
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2 years, 141 days since starting Benicar
Palliative meds: can't remember the last time he needed any!
Light exposure: still using the invisible zinc cream on exposed skin on the days he goes out, which is most days; using only 40% Noirs out of doors now but if the weather is cloudy he takes them off.
Symptoms: Matt woke without a headache yesterday and is still without it, nearly 48 hrs later!! He only has constant headaches on IPR days ie days 3-5 of his cycle. This is the first time he has taken deme and the IPR is very tolerable and doesn't stop him from doing anything or make him reach for the paracetamol.
Comments: We had our Dr's appointment last week and Dr T is concerned about Matt's kidneys. His creatinine reading is up at 133 mol / L and his potassium level is 5.5 mmol / L. I have read the information in the FAQ about kidney function and will send the link to Dr T. Dr T has ordered another blood test for a month's time and I hope the reading will be on its way down. Not sure what Dr T will do if it is not.
Regards, Robyn
PS I forgot to add that Matt has grown 2.5 cm in the last 3 months (164.5 cm) & put on a couple of kilos (46.3 kg)
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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: Fri Apr 25th, 2008 06:16 |
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2 years 237 days since starting Benicar.
Palliative meds: rarely needs any (I think he had paracetamol twice in the last couple of months).
Light exposure: still MOSTLY using the invisible zinc cream on exposed skin on the days he goes out, which is most days - he is resisting wearing the zinc cream now and often goes out for an hour or so without any; using only 40% Noirs out of doors but we have to nag Matt to wear them at all these days- more often than not he goes out without them.
Symptoms: Matt doesn't have a headache at all these days, whether it is a day when he would normally have IPR or not. The only IPR we are now noticing is slight nausea.
Comments: The extra sun that Matt is getting these days does not seem to be affecting him adversely. He insists that he doesn't need to worry about the sun any more but we are urging him to be cautious and to go slowly with his sun exposure. I presume that he is starting to regulate his own vit D levels now........we still keep vit D out of his diet (he is so used to that now that he doesn't worry about it and it is not an issue for him). He is on school holidays at the moment and is enjoying himself with his friends. We have talked him out of trying to make the grade with his football team for now. The U16's are rather serious about their footy and I think it would be way too physical for him at this stage. But that's about all he is missing out on!
We see our doctor next week and hopefully Matt's creatinine levels we be even lower this time than the last. Matt is eating like a horse so it will be interesting to see how much he has grown. He looks way down on me these days........
Regards, Robyn
Last edited on Fri Apr 25th, 2008 06:17 by robyno
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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 Jun 9th, 2008 08:29 |
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2 years, 282 days since Benicar
Palliative meds: rarely needs any; trying to remind him to take a probiotic a few times per week, which he mostly remembers.
Light exposure: still MOSTLY using the invisible zinc cream on exposed skin on the days he goes out, which is most days - he is resisting wearing the zinc cream now and often goes out for an hour or so without any; not using Noirs at all now.
Symptoms: No headaches and nausea has not been an issue. Matt still gets occasional dizziness so he just takes it easy when that happens (which is usually at school when he is playing sport – but it doesn’t always happen with physical activity, just sometimes).
On 14 May Matt woke in the middle of the night with a tummy ache (just above the navel), which was so bad that he couldn’t sleep. An extra dose of Benicar seemed to settle him. I kept him home the next day but he seemed to be OK. Got him in to see Dr T the following morning and he concluded that it was not appendicitis (which I was concerned about) and probably IPR (a new one!). Dr T suggested that Matt drink more. I also thought he should take probiotics again (he hates them and I had stopped pushing them on him). No tummy aches since then, fortunately. No other IPR that I can see or that he complains about.
Comments: We got the results of his blood tests from 7 April – his creatinine is still falling and was 96 mol / L. Dr T was very pleased. His sodium and potassium are normal, his weight is now 49 kg and his height is 166 cm. His 25D was 28.8 ng / ml, the highest it has been in a long time. He is still avoiding vit D in his diet but is getting more sun. Not sure how much longer I can get him to put on invisible zinc cream for. At least it is winter here now and he still wears it to school. BP was 90/50.
Matt considers himself cured and doesn’t give his illness much thought any more. He is busy with school and his friends. He is in the process of picking his subjects for his last two years of high school and thinks he will do double English – all those months spent listening to audio books when he was too sick to do anything else have counted for something! He just loves to read and write.
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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Deb Grabetz
Member in Phase 2
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Posted: Mon Jun 9th, 2008 21:08 |
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robyno wrote:
Matt considers himself cured and doesn’t give his illness much thought any more. He is busy with school and his friends. He is in the process of picking his subjects for his last two years of high school and thinks he will do double English – all those months spent listening to audio books when he was too sick to do anything else have counted for something! He just loves to read and write.
Regards, Robyn
Robyn,
This must be thrilling to be able to post such an update! Best wishes...and it sounds like Matt's last two years of high school just might be his best! Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42, Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home, not working, 4/07D25/11 1/08D25-0 Weaned Pred with MP/ CranialSacral weekly
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