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Dr Trevor Marshall
Research Team
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Posted: Sun Oct 23rd, 2005 22:37 |
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Robyn,
Does Matt listen to Jim Dale's Harry Potter narration or the British narration? There is a difference, we prefer Jim Dale's in my family. Characterizations are far more precise, IMO.
Say 'hi' to Matt for me.
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robyno
Member in Phase 3
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Posted: Sun Oct 23rd, 2005 23:26 |
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Hi Trevor
I think you and Matt are about to have your first disagreement - he prefers the English version! I'll let the two of you sort that one out when he is well enough to log on to the computer!
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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Dr Trevor Marshall
Research Team
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Posted: Mon Oct 24th, 2005 01:26 |
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Please tell Matt I have all 6 of the Jim Dale audiobooks on my MP3 player. And my daughter is coming down from Berkeley on 18th so we can attend the opening of the "Goblet of Fire" film together
..Trevor..
ps: Matt can contact me using "Trevor@hogwarts-alumni.co.uk"
Now isn't that scary??(LOL)
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robyno
Member in Phase 3
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Posted: Wed Oct 26th, 2005 01:05 |
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Matt laughed and shook his head when I told him about your neat email address, Trevor - I am not sure what that means! We are all big Harry Potter fans and envy you seeing the new movie soon. We will wait until Matt can look at a screen again before we see it - I don't think we could bear to go without him. It has been over a year now since Matt was able to watch TV or see a movie. He listens to The Simpsons every night because he has seen all the episodes so many times he knows what is happening without having to see it! It will be so wonderful when he can watch TV again - I never thought I would be saying that at any stage in his life, but there you are.
Matt had his 3rd dose of 50 mg mino after lunch today. His herxing wasn't quite as bad after the 2nd dose as it was after the first 50 mg dose, but we gave him 4 hr Benicar yesterday and he said that helped. We will do that in future after the first couple of increased doses, just to help him along. This morning he felt a bit better again, so the herxing is tapering off.
So he continues to do well.
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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Dr Trevor Marshall
Research Team
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Posted: Wed Oct 26th, 2005 03:03 |
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Robyn,
I remember what it was like not to be able to handle the stress of movies or films. Matt will get through it, but it takes a year or two. And there will be all those wonderful (but scary) films about Hogwarts for him to explore.
..Trevor..
ps: I sent him an email from Hogwarts to your address
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robyno
Member in Phase 3
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Posted: Sat Oct 29th, 2005 07:53 |
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Thanks for the messages, Trevor - Matt will be able to answer you himself one day. It's interesting that you used to find movies and TV too stressful to watch. I asked Matt exactly what happens when he tries to watch a screen and he says it "just hurts". He is referring there to his headache - that was his first symptom and the one that predominates for him. So when he tells us how bad he is herxing, he answers in relation to how bad his head feels. We can judge many of his other symptoms ourselves. So I wonder if your response to TV / films when you were ill is similar to Matt's, just manifest a bit differently? I guess that would be difficult to answer.
Matt will have his 5th dose of 50 mg mino tomorrow. Overall he has handled the 50 mg mino a bit more easily than the 25 mg. The herxing headache is tapering off, but we notice that he sleeps more and seems to sleep a bit better. His dizziness when he gets out of bed has increased over the last few days, but it is not too much of a problem. The intensity of his tic has tapered off over the last couple of days. All in all, he is doing pretty well.
We got the results of his last vit D test on Friday. The blood was taken on 7 Oct 05, 3 weeks and 3 days after Matt had been on Benicar, and the day before he started the mino. Before I say what the numbers are, I should say that our message about keeping the serum frozen before testing must have at last sunk in because the pathologist made Matt wait until the courier was about to arrive before taking the blood, and then put a "must keep frozen" sticker on the sample. That was great, but I couldn't help but wonder whay they had not done that the previous two times........OK, the 1,25-vit D = 27 pg/ml (it was 30 on 12 Sept, the day before Matt started on Benicar), and the 25 vitD = 23.6 ng/ml (it was 21 on 12 Sept). So, I think there must be serious doubt about the previous readings as I think that the 1,25 vit D reading should have gone down by more than that after more than 3 weeks on Benicar. Would be interested to hear what the experts think......
I am tempted to get another blood test done at another lab, if Matt is up to a trip to the pathologist. I will see how he feels about a quick trip out this week.
Well, that is about it for now,
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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Dr Trevor Marshall
Research Team
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Posted: Sat Oct 29th, 2005 08:15 |
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Robyn,
The Angiotensin blockade usually cuts the 1,25-D dramatically. But there is little benefit in doing more testing, I think. Just focus on getting Matt better. Testing his 25-D every couple of months, to make sure it drops below the teens, is a good idea, though. But the 1,25-D will be all over the place now, with a 4-6 hour half-life.
I used to find that television sets flickered really badly, and thought that the flicker was giving me headaches. This is particularly so for 50Hz PAL (Australian/European) TV sets.
Then I found that wearing the dark NoIR(equivalent) cut out the flicker, and, since recovering, I haven't seen any screen flickering for several years, even with today's clear glasses.. So you might look into that factor.
But one's ability to handle stress is also reduced by the disease. The (diseased) body just can't handle stress, even the stress of a fictional TV show. Is it because one or more of the pathogens flourish in an epinephrine-rich environment (eg M.Leprae)? Just don't know yet...
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robyno
Member in Phase 3
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Posted: Thu Nov 3rd, 2005 21:37 |
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I won't worry about another vit D test for a couple of months then - it will avoid having to take Matt out, which is good.
Matt has noticed the flickering in the TV that you mentioned, Trevor. I told him what you said about the very dark glasses so he tried it again, but no luck, unfortunately. Matt seems particularly sensitive to moving pictures / words / letters, which is probably why he can't read or write or watch a screen even with his darkest glasses on. He hates driving in the car as well and has to sit in the front so he can avoid watching the scenery pass by out of the side windows. Even then he climbs up a wall if he can't get out and walk around every 20-30 min or so. It is all very interesting. I can't help but smile when I think of the paediatric neurologist who suggested that we take 3 months off to drive around Australia to take Matt's mind off his very strange symptoms - wouldn't that be a fun trip!!
Matt had his 7th dose of 50 mg mino yesterday. He only herxed after the first couple of 50 mg doses so we planned to up the dose to 75 mg tomorrow (ie two weeks after the last increase in dose). He thinks he might be coming down with a cold - his Dad has a bad one at the moment and Matt has a bit of a tickle in his throat this morning. Should we go ahead as planned with the increased dose tomorrow, or should we wait and see if a cold develops? Would it make any difference?
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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Dr Trevor Marshall
Research Team
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Posted: Thu Nov 3rd, 2005 23:23 |
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Robyn,
The MP will make no difference to the course of a cold. If anything, it will allow the immune system a better chance to fight the virus. On the other hand, flu-like symptoms are a very common manifestation of herx. They come and go more quickly than a viral cold does.
I am keen to help Doc get Matt to phase 2, as it seems you have the herx all figured out, so it would be good to continue ramping as he is able. My guess is that the 'modified phase 2' is going to have a profound effect on Matt's psyche, and hopefully move him beyond these neurological manifestations more quickly.
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robyno
Member in Phase 3
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Posted: Thu Nov 3rd, 2005 23:51 |
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Trevor - that would be soooooo wonderful! I just had a chat to Aussie Barb and she advised us to send for the Phase 2 questionnaire just as soon as Matt goes up to 100 mg mino, which should be in two weeks time if all goes as well as it has until now. We have an appointment with our doctor on 29 Nov, so that should work in well with getting prescriptions and reading up on what Phase 2 is all about. A "modified Phase 2" sounds intriguing........
We just can't wait to see these unnerving symptoms disappear. Matt can hardly remember not having a headache, and John and I still freak every time his tic gets louder or stronger. It will be wonderful to see them disappear and Matt get 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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Dr Trevor Marshall
Research Team
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Posted: Fri Nov 4th, 2005 03:02 |
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| Er, well, yes, well, er um, I don't know how to say this, but the herx will probably make them a little worse before they get a little better, so please don't get too excited just yet
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robyno
Member in Phase 3
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Posted: Sat Nov 5th, 2005 23:20 |
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It doesn't take much to get us excited around here, Trevor - every time Matt ramps up his mino dose he does it to loud applause! But don't worry, all feet are firmly planted on the ground and we know we are in for the long haul.
Matt took his first dose of 75 mg yesterday after lunch and started complaining that his head was getting worse by late afternoon. He said it's not as bad as it was after the 50 or 25 mg doses, so each ramp-up he seems to be tolerating better than the last. He is very tired and his voice is quite hoarse. His tic seems about the same, though. We have him on 4 hr Benicar today to help him through the worst of the herx. And ,of course, Harry Potter is doing his bit as well!
So, Matt continues along OK........
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 Nov 13th, 2005 02:28 |
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It has been "steady as she goes" for Matt this past week. His cold didn't eventuate into anything too awful and was gone in a few days. Matt had his 5th dose of 75 mg mino after lunch today. He didn't herx much after the 4th dose so we are not expecting much of a reaction to this one.
We gave Matt 4hr Benicar the day after each of his first three 75 mg doses this time as he says that Benicar beats paracetamol for a headache any day. However, his dizziness increased noticeably after the third increase in Benicar so it will be interesting to see what he decides next time. We are very guided what Matt thinks these days - he is getting a real feel for his meds and his illness.
Yesterday was a big day for Matt. Our doctor has had him on a gluten-free diet for the last 3 months, and yesterday his 3 month wait for a piece of wholemeal toast was up! Boy, I have never seen anyone enjoy a piece of toast as much as Matt did yesterday at breakfast time! With his nausea it is very hard to tempt him to eat much at all, but he had a piece of toast for breakfast and lunch (you can see how little he is eating at the moment) and then two for afternoon tea! He has a couple of pieces of fruit during the day, and a small helping of meat and veg for dinner, and that is about it. Our doctor is keeping an eye on his weight and we are sure he is getting taller (we will measure him at his next doctor's appointment), but I will be very glad when he gets his appetite back again (though he has never been a big eater).
I have read the posts on foods to avoid and the warnings about folate additives to white bread. Do any of the Aussies know if the same is true in Australia? We are not missing white bread as we have always eaten wholemeal bread, but we are curious as to how much of a problem folate additives are here. The labels on all the wholemeal breads I checked yesterday list both wholemeal flour and soya flour as ingredients, but didn't give the percentage of either (and I have had no luck trying to find out via the internet, though I am not very patient). Might this be a problem? I am in the process of trying to find out from the local bakery what they put in their wholemeal bread. What do all the Aussie MPers advise?
One thing Matt's gluten-free diet did was to make me very familiar with the health food section of the supermarket. All the ingredient lists on the health foods are necessarily very complete and the rice / corn flours that have folate added are very clearly labelled and easy to avoid. Will keep buying many of those products (eg corn and rice pasta, which we all like), but unfortunately the gluten-free bread is revolting (Matt's words, though the rest of us are inclined to agree with him!).
That's our news for now. We are all looking forward to the 100 mg dose of mino next Saturday, then the move to Phase 2 some time after that.
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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Dr Trevor Marshall
Research Team
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Posted: Sun Nov 13th, 2005 12:25 |
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Robyn,
Minimize the soy content in his bread. Some have said it upsets them. Trying for a rye or wheat blend is best, I think. If folate is added it will be on the ingredients, although you might check the flour. The last time I looked, Australia was not supplementing flour.
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robyno
Member in Phase 3
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Posted: Thu Nov 17th, 2005 23:14 |
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I contacted the Bread Research Institute in Sydney to check out the issue of folate in our flour and they have assured me that it is NOT added to flour routinely, so that is still the case, Trevor. Where it is added it would be clearly marked in the list of ingredients. I also rang Helga's (the Aussies will know all about Helga's) to ask how much soya flour they add to their wholemeal and light rye breads and was told 0.5%. So they don't add much, but our local bakery doesn't add any so I think we'll go with that. Matt is still savouring the luxury of a piece of toast.....
Matt will have his first dose of 100 mg tomorrow. He tolerated the 7x 75 mg doses very well, though he still herxed very mildly after his 6th dose, but not his 7th. Previously he had stopped herxing after the 3rd or 4th doses. While his headache is no better than it was before he started Benicar, and his tic is a bit stronger, and his other neurological symptoms don't seem to have changed, we have noticed two very small moves in the "improvement" direction that I will mention even though they are very slight. For the past 6-7 months (I can't remember exactly when we first noticed), when emptying Matt's waste paper basket, we have noticed a small amount of blood on his tissues (sorry if this is too much detail!!). We had assumed that it was just another part of his illness. Well, a few weeks ago it stopped, which would make it sometime after he started his 50 mg mino doses. OK, it might be insignificant, but it's something. The second thing to note is that Matt said a few days ago that he didn't think his hair felt quite as sensitive. He still won't let me near him with a comb or a pair of scissors, but he says it definitely feels a bit better. So that's something, too.
That's all I have to report for now.
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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jillian
Member in Phase 2
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Posted: Fri Nov 18th, 2005 11:25 |
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Robyn,
How exciting to notice some changes for Matt. No good change is a small change in my book, its HUGE. Not only is something not progressing, it's getting better. Without the MP, we've all been getting worse.
Please give my personal greetings to Matt. I've been watching his progress. I can't imagine how tough it is for him. I too was sick as a child (sarc), although not like he is.
Also, I can't tell you what a warm spot you 'MP' parents have in my heart.
'til later,
Jillian from North Dakota
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PrimryDX-PulmoSarc79,FMS,CFIDS,etc,disabled93. AvoidD/Noirs Aug02. Oct02: 1,25D=42 NTfrzen; Apr05:25D=10. P1 Oct05-Feb06; ModP2C Feb-Nov06; P2 Nov14-Dec06; ModP2BSS Jan-Mar07; ModP2CBSS Mar07-. Noirs & total light control in house.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19258 |
| Status: |
Online
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Posted: Fri Nov 18th, 2005 14:41 |
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Robyn Matt John,
Thank you for your report.. good to see your progress
Here are some Hair posts 
Here are the FAQs How do I know if I'm ready for phase two?
Where can I find phase two and three?
all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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robyno
Member in Phase 3
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Posted: Mon Nov 21st, 2005 01:35 |
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Thanks for your encouragement, Jillian and Barb. We are thrilled with how well Matt seems to be doing. His herx (ie headache) after the first dose of 100 mg mino was tolerable but we gave him 4 hr Benicar to help him through it the following day (yesterday). By yesterday evening it had started to wane, and this morning he said he was ready for his second dose of 100 mg mino after lunch. His tic is still quite strong (John and I can't wait to see that symptom disappear, it is so unnerving!) but he is cheerful enough.
Matt was pleased to meet another MPer (almost) yesterday when ElizaH came over for lunch - there are very few MPers in Canberra so it's important that they stick together!
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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supersarcboy
Guest
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Posted: Mon Nov 21st, 2005 02:19 |
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Dear Robyn,
Just wanted to say hello and let Matt and you all know how much we are all pulling for him. We sure admire him. So glad to hear he can keep his spirits up, what courage he has! Hopefully, my son Michael should be trudging along after Matt.
Warmest Regards,
Dawn, Michael's Mom
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robyno
Member in Phase 3
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Posted: Mon Nov 21st, 2005 02:30 |
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Hi Dawn (and Michael)
Lovely to hear from you! Matt and I have been following Michael's progress as well, and Matt was pretty upset to hear that Michael needed an oxygen tank to help him through the day. "Golly, he must fell worse than I do!" was the reaction, and he thought he felt bad enough! I am sure that as the boys heal and start to feel well enough they will have a lot of stories to swap.
Good luck with the mino pulsing - we will be watching Michael's progress eagerly and hoping that he rockets along just as Matt has done so far (touch wood!). I don't like to think about where we would be without the MP!
Take care, and give our warm regards to Michael,
Robyn (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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