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BARNEY
Moderator
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Posted: Sun May 7th, 2006 04:50 |
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Robyn/Matt,
My heart almost leaps out of my chest for you with all your improvement.
Am so very happy for you. Keep up the good work.
HANG IN THERE, WE WILL MAKE IT!!!! LUV, 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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Jimbbb
Member
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Posted: Sun May 7th, 2006 21:51 |
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Robyn/Matt,
I (we all) have long awaited the day when we see the post that starts:
"Hi, this is Matt ....."
... maybe sooner than we think, eh?
jim
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Interested (healthy) bystander with distant cousin who has Chronic Lyme.
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robyno
Member in Phase 3
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Posted: Sat May 13th, 2006 07:22 |
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Thanks Frans, Barney and Jim - yes, Matt is on a roll. His tic is now at 1-2 per day (yes, per DAY, not per minute as it has been!) and only then when he is doing something difficult like watching TV for a few minutes. So we have declared those null and void and ticked the "pulses" off his symptom list.
It is Mothers' Day here this weekend too, so tonight we are all going to the local Club for dinner as soon as it gets dark. It will be the first time in ~18 months that the family has been out for a meal. Grandma Bett (John's Mum) is visiting as well so it will be a very special Mothers' Day celebration - Matt is so excited that his only distinguishing feature will be his dark glasses, and lots of people wear dark glasses these days so no-one should give him a second glance (that horrid tic of his used to come in for some strange stares). We have rung our order in ahead of time so that we can be there and back inside an hour - Matt will be wiped out by the time he gets home, but he is determined to go. It will be a nice, normal thing to do.
The other good news is that Matt thinks his background headache is starting to improve now - the other HUGE symptom. So now we can start to track its demise along with the others! He is also more interested in doing some school work so we will ramp that up slowly from here.
The only thing left to say is "Thank God for the Marshall Protocol"!!! And Happy Mothers' Day to all!
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: Sat May 13th, 2006 07:56 |
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It is so good to hear that there is a big festivity going on for your family and that Matt is able to join you all in it.
HAPPY MOTHER'S DAY to Robyn and John's mum.
and....HAPPY OUTING DAY to 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 May 21st, 2006 05:24 |
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We have had a pretty good week. Matt's "pulse" count for last week has been just two for the entire week!
We all enjoyed our Mothers' Day outing last weekend and no-one gave Matt a second glance. We were home within an hour and Matt went straight to bed afterwards but he was fine the next day. We have also visited the Hi Fi shop the last two Friday nights. Matt likes checking out all the lastest electronic devices - junk mail in the flesh, I suppose! That is another normal thing he can do now even if it is for just 20 min or so.
Matt is also asking for some more school work so I am off to school this week to sort out some more work for him. He hasn't made much progress with his Shakespeare play so far but is enjoying keeping a journal (his writing is fine now) and doing a bit of story writing. He can last 15-20 min at tasks like that but that will improve. It's an awful lot better that where he was at a few months ago.
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 May 21st, 2006 06:12 |
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Robyn,
That is such wonderful news!!! Matt just keeps on improving, even tho it seems small...it is so big for him.
You are such a good Mom!!
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: Tue May 30th, 2006 00:37 |
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Sorry to be a bit slow this week with my posts. Matt is doing fine - he can even watch his 7 min of TV now without a "pulse" so they seem to have disappeared completely. We are off to our Dr this afternoon and Matt can't wait to see if he will notice the absence of his pulses. I hope for his sake he notices as Matt will give him a hard time if he doesn't!
The school has organised a stack of work for Matt to do. He took a big gulp when he saw it all but I tried to reassure him that it was there for when he felt like it and not before. We'll see how he goes. He is not up to terribly much yet, though he is enjoying writing stories for his English teacher. He is a budding Harlan Coben (Matt just loves his books and all the wise cracks his characters make!) so I hope his English teacher will forgive him his strange story lines and attempts at humorous one-liners! I suppose it is not surprising that he hasn't exactly taken to Shakespeare!
I think that is about all our news 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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robyno
Member in Phase 3
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Posted: Sun Jun 4th, 2006 05:40 |
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We have had a pretty good week. Matt is herxing at the moment as we upped his abx yesterday, but he is managing it well. Matt has enjoyed a visit from his cousin, Travis, from Melbourne this weekend. Travis hadn't seen him for ~18 months and was thrilled to see how much better he is looking now. We have had a lot of laughs this weekend.
We saw our Dr this week and he was very pleased with Matt's progress. Matt didn't give him much of a chance to notice the absence of his pulses before blurting out "they're gone"! I know one doctor in Canberra who is very impressed with the Marshall Protocol!! Having said that he pulsed in the car on the way home, but only once. I think that shows us just how difficult Matt still finds the car and there is no way we will be going anywhere while that is the case. We need to kill a few more bugs first.
Matt says hello to everyone.
Me too, 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: | 3930 |
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Offline
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Posted: Sun Jun 4th, 2006 06:02 |
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Wouldn't be the first time I had thought some symptom/Herx of mine was gone, and then came back so soon after I felt maybe I had been to quick to state it as such. But even still, it just seems like they finally do just go away and then they are really gone. They just had to do one or two last curtain calls before bowing out. These last blips on the radar don't hit with as much intensity or frequency either.
Glad to see such wonderful progress for your family. So wonderful!--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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robyno
Member in Phase 3
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Posted: Sun Jun 11th, 2006 10:19 |
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Thanks Janet. No pulses at all this week, even while riding in the car or watching TV for a few minutes, so with any luck they are gone for good now. His headache continues to improve slowly.
Matt and David kicked the footy in the back yard after dark tonight - was only for 5 min or so but it has been one of Matt's ambitions for a long time now and he has done it. The pair of them kick their soft footy about the house now as well, something I always used to growl at them for. But not any more - they can break what they like (within reason, of course!)! Won't be long before we are ringing the coach to tell him that Matt is about to make a come back!
We don't have much more to report. Another English assignment was typed up today and Matt expects to do his exam this week some time. He can tackle a few other subjects next semester. His Poppy (my Dad) is coming to visit for a couple of weeks on Friday so Matt will enjoy his company while the rest of us are at school and work.
That's about it 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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robyno
Member in Phase 3
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Posted: Sun Jun 18th, 2006 06:32 |
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No more pulses this week, either.............they don't even get a mention any more!
Matt thinks his headache is improving steadily now and even commented that the Panadol actually helps - I guess that means it wasn't making much difference until now. So that is great news.
Matt is over the worst of his herx days for the current abx combination/doses so I am expecting him to make some more in-roads on his school work this week. He can still only last 20 min or so at a time concentrating on anything and is a bit frustrated with himself that he has forgotten so much, but all he really needs is practice. We just have to be patient and as his fatigue and headache improve he will be able to do more. He gets a big kick out of finishing something and moving on to the next exercise or assignment.
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 Jun 26th, 2006 11:17 |
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We are almost through the current antibiotic combination and are looking forward to starting a new abx in a couple of weeks or so. Matt's herxing is not as strong as it was at the lower doses so it will be good to move on and try a new one.
David handed in Matt's English exam today so he is anxiously awaiting the results. He is looking forward to doing more subjects next semester. It was a wonderful achievement to get even one subject completed in the first semester this year - six months ago I would not have predicted that!
Matt looks forward to sitting on the deck each day when it gets dark to get some fresh air. One night last week I couldn't find him - he was at the back fence talking to the kids next door and their dog. I don't think the neighbours were getting much of a word in - it was lovely seeing him do kid things again. It's been a long time....
We have lots of family visiting at the moment so Matt has lots of company. David is on holidays as well, which he enjoys very much.
That's our news for this week. Sorry I am a bit late.
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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robyno
Member in Phase 3
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Posted: Sun Jul 2nd, 2006 07:59 |
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Mattie has had a great week with visits from his Poppy and aunt and then his sister flew in from Adelaide for a few days. He has had lots of laughs and everyone is thrilled with how well he is looking. My Dad in particular had an awful lot of trouble coping with his tic (didn't we all?) and was much relieved to see that it was gone and that Matt was looking so well.
Matt was also over the moon with the "A" he got for English (he got this beautiful letter from his English teacher, whom he has never met - the sort that a mother wants to keep forever!). It has given him a real boost and he is looking forward to seeing how many subjects he can get through next semester. To add to the excitment the school sent home the great long list of subjects for year 9 (starting Feb 07, so we think that Matt stands a very good chance of joining his classes by then - I know, we'll have to see how he goes, but it is very possible!!). Naturally, Matt wants to do the lot so we have had to explain that that is not possible as there are not that many hours in a school day (he is even arguing with us over that one!). So he has made list after list and studied the handbook (isn't it wonderful that he can actually read the handbook?? it wasn't that long ago that reading was not something he could even contemplate!) and we are no closer to deciding what he should do than we were before we got the list! Never mind, it will come together.
This whole subject-picking exercise has reminded me of something Matt has said quite a few times since starting MP and feeling himself getting well again - "Mum, when I'm better everything will be 10 times better than it was before". I am sure there are a few MPers out there who know exactly what he means.
On that note I will close for now. Can't wait for that next antibiotic combination, which will start in about 10 days 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 Jul 2nd, 2006 13:00 |
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CONGRATULATIONS MATT!!!
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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robyno
Member in Phase 3
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Posted: Mon Jul 10th, 2006 11:21 |
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We are still progressing nicely here. Matt's light sensitivity is starting to decrease a little - he has actually noticed how dark his room is now, though he still manages to read in light that I would have trouble finding the book. He is in great spirits and very much looking forward to his next antibiotic, which he will take for the first time on Thursday.
Matt only spends about half of his waking hours in bed now. Once his worst herx days are behind him he feels more like doing some school work. He has forgotten a lot of his maths but it is all gradually coming back to him. At least he now feels like doing some work and it is great to see him working at his desk. He will get there, little by little.
That's it for this week. Next week I will be able to report how he is coping with his new antibiotic - it is not worrying him at all. He knows that he has to herx to get better, and that's OK.
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 Jul 18th, 2006 03:58 |
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Today is Day 6 of Matt's new antibiotic combination (Phase 2, having just finished his modified Phase 2). The herx started towards the end of Day 2 and continued through to the middle of Day 5, when it started to wane. Matt woke up this morning saying that the herx was gone and that his headache felt like it had improved a bit ie was a bit better than it was before he started herxing. Great news!
The latest herx is a bit different from those he had become accustomed to - he was much more tired than usual and the herx lasted a lot longer. But it was bearable and he only seemed to need the extra Benicar on Day 3. We will see what the next cycle brings.
The other good news this week is that Matt's blurred/double vision that he has been waking up to each morning for the last 18 mo or so seems to have petered out. In the last week it stared coming later and not lasting for as long and we have even had a couple of days without it. The last time he couldn't see properly was last Sunday morning for about 15 min - with any luck, that will be the last of it.
I have been looking back over the records trying to map out when each of Matt's symptoms has dissappeared and working out what is left to go:
-3 weeks into Ph. 1 - nose bleeds stopped
-2 mo into MP (10 days into mod. Ph. 2) - was able to have a haircut
-5 mo into MP - was reading again
-6 mo into MP - was writing again
-and noticed that his tic was starting to become less frequent
-8 mo into MP - we declared his tic gone
-10 mo into MP (at the end of mod. Ph. 2) - blurred / double vision gone (touch wood!)
What strikes me in all that is just how quickly the improvements started coming and they just keep coming.
So what is left?
-The headache is still there, though I think it will be the last to go as it was the first to come. I imagine that it will peter out - even a few hours without it is something to really look forward to. It is definitely not as bad as it was when he started MP.
-Matt still has problems with watching TV and using the computer (the movement is what seems to bother him the most)
-and riding in a car (movement again)
-and he still sleeps sitting up.
-He is still tired
-and very light sensitive,
but the list of symptoms that we have ticked off is now longer than the one we have left, and all those have shown improvement anyway.
The MP is working beautifully.......
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 Jul 23rd, 2006 06:48 |
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The blurred vision has not returned, thankfully, so that seems to have gone for sure. Great news.
Matt has enjoyed 6 herx-free days. He has started exercising and even invited a very good school friend over for an hour this afternoon. John, David and I get the feeling that he has turned a corner.........we'll see what happens over the next antibiotic cycle.
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 Jul 30th, 2006 11:22 |
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Matt continues to enjoy Phase 2 - so far it is easier than the modified Phase 2 that he has just completed and he has about 6 herx-free days in a row. On those days we can see just how much he has improved.
Matt is exercising regularly with a set of weights we got in the sports shop on Friday night. Right now they are his prize possession and definitely cool. He keeps checking out his calf muscles and telling us how big they are getting now! He kicked the footy 18 times last night (those calf muscles are being put to good use!) and really enjoyed that. He also spent a short time on the computer, which is a start. His TV watching is up to ~20 min at a time. So it is all good.
Matt has started to nag about wanting to go back to school. We have said that as soon as he thinks he could last two hours at school then he can go for an afternoon - he just has to tell us when he is ready. He thought for a bit and said that maybe not just yet, but soon..... I hope he's right. We have a tutor lined up to come to our house just as soon as he could last an hour at his books - he's not quite there yet either, but it won't be long. At the moment he does ~30 min of work a couple of times a day on non-herx days, but that is improving all the time. He knows he still has a fair way to go. We just have to reassure him that it is all OK and not to worry too much - he'll catch up fast enough when he's well.
That's our news for this week.
Regards, Robyn
see Matt Baby file link
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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 Aug 6th, 2006 11:17 |
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We don't have much news this week. We have worked out that Matt has developed a "sneeze herx" so we think he must be cleaning out his sinuses. His light sensitivity is improving greatly, though it still has a long way to go. He is over his herx for his current abx cycle and is looking forward to doing more exercise and schoolwork over the next few days. Hopefully it won't be too much longer before we can get a tutor to work with him for an hour or so.
Matt has his birthday to look forward to in a week or so and is planning to have a few friends over to help him celebrate. It will be quite a contrast to his last birthday, just before he started on MP! We will take plenty of photos!
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 Aug 14th, 2006 03:41 |
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HAPPY 14th BIRTHDAY MATT!!
Today is a big day for Matt - he is now 14 and feeling so much better than he did on his last birthday, just before he started MP. He is herxing today but he's not letting that dampen his spirits. He's having some friends over next weekend to help him celebrate - to feel well enough to be planning a little party is a huge achievement!
On Thursday Matt will be having a tutor come to our house to take him through some school work, which is another milestone. His energy levels have definitely increased markedly over the last few weeks - he even helped me unpack the groceries from the car last Friday night while I stood there with my mouth open. I can't remember the last time he did that.
So it's all good news here.
Regards, Robyn  click here for Party
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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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