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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19240 |
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Posted: Sun Sep 4th, 2005 11:42 |
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Edit: Matt starts Benicar 13 Sept 05 see below>>
Robyn, John, Matt,
Thank you for posting.. I will post some Links to Information here for you & for you to give to your Dr.
THE MARSHALL PROTOCOL is at the top left of your screen on each page and has the full sitemap to keep all the Information sources in easy reach at all times.
Your Dr is welcome to join the PRIVATE SECTION FOR MEDICAL PROFESSIONALS and to call Dr Marshall.
re Blood tests: Which diagnostic tests do I need?
What do my lab tests mean?
How often should I test D levels? What are the target numbers?
re Diet: FOODS TO AVOID Vitamin D, folic acid, refined sugars, excess carbohydrates
If you do not see the food you are questioning in this list, it does not contain Vitamin D. If you need further reassurance, you can do a google search and/or contact the manufacturer.
FOOD TIPS Helpful hints & testimonials
THE IMPORTANCE OF AVOIDING VITAMIN D & FOLIC ACID and refined sugar, excess carbohydrates
Insulin Resistant Diet Modified Carb, Low Glycemic Index
see also Side Topic Discussion Related to the Marshall Protocol
Acceptable food choices Common foods allowed
re Supplements: Why do I have to stop taking supplements?
I thought all over-the-counter supplements were safe. Which ones should I be concerned about?
Should I take vitamins?
Why are so many doctors ordering Vitamin D supplementation?
re Vitamin D: Hypervitaminosis-D Symptoms High 1,25-D
Vitamin D Tutorial Calciferol and Calcitriol
re any meds: see this link and the link within Should I stop taking any of my medications?
There are Testimonials here: TESTIMONIALS to the Need for Avoiding Light Member's personal experiences
THE IMPORTANCE OF AVOIDING INGESTED VITAMIN D Food tips & explanations & Testimonials
MARSHALL PROTOCOL SUCCESS STORIES
re Symptoms: Dr Marshall says: " .... the biggest issue, IMO, is trying to micromanage the healing process. If you are typical of the folks who come looking to the MP for relief, then you have a body which is very ill. It is systemically ill, there will be no part of it that has totally escaped damage. That's the problem with micromanaging - when you get too much data it becomes not easy to analyse what is happening. Healing takes place on a yearly scale, and testing should follow it in the same timeframe, IMO."
The First and Constant Guide to the Marshall Protocol is the Phase One Doc.. Please check all precautions / instructions.. some have it printed to check with regularly. and it is important to follow it exactly as written for Safety and Efficacy of the treatment.. The aim is to achieve tolerable herxing by adjustment of meds dosing and schedule while diligently avoiding Light and vitamin D..
The BENICAR Information Post at the top of the Benicar Forum and reading some of the Progress Reports in the Benicar Forum may be helpful to you also. I can see you reading this to Matt.. and of course Dr Marshall has given you the beginning Benicar Information for Matt, for your Dr.
When you can, please fill your signature line < see this link for further details to include Thank You ..
Please let us know if we can help you in any way. all best, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Margo
Member Advocate
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Posted: Sun Sep 4th, 2005 12:17 |
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Robyn,
I would be very worried about anything with even "minimal vitamin D" as it is likely to be way too much for someone with a Th1 disease. It is hard for someone who has not seen how helpful avoiding vitamin D foods and supplements to appreciate how even a little bit can be too much.
Some people who were prescribed supplements containing vitamin D which they took for several years have found that it also takes a very long time (years even) for their blood levels of the vitamin D metabolites to decrease.
I'm so glad for you all that you have the prescription for the Benicar. My daughter began using Benicar as part of the Marshall Protocol when she was 12 years old. (She is now 14, and has had significant improvements on the MP.) She adjusted to it very easily, and found it made a big difference. For example, her headaches immediately improved. It's good to realize that while some people do have trouble adjusting to Benicar, not everyone has that problem.
Margo
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Parent of teen-aged sarcoidosis/uveitis patient on the MP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19240 |
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Posted: Sun Sep 4th, 2005 12:41 |
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Robyn, John, Matt,
There is additional Information here: CHILDREN & MP Information and Links
see also Topic: School- questions
and What precautions do I need to take when I am going out or when travelling away?
In case you are needing the mino sooner and so you do not have to wait or go out for a Dr appointment.. it may be a good idea to have the Mino script as well, and a tablet splitter, and have an arrangement with your Dr re calling him when the time comes.
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: Sun Sep 4th, 2005 20:25 |
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Thanks Trevor - that couldn't be clearer! I will forward your response to our doctor and urge him to talk to you (I think he was intending to get in touch with you early this week anyway).
As of now we will take Matt off all the supplements except vitamin C.
Thanks again, 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 Sep 13th, 2005 22:33 |
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We have some great news - the Benicar arrived this week and, after a quick doctor's appointment yesterday, Matt started taking his Benicar (20 mg every 6 hr, as he weighs 40 kg, which is about half the weight of an average adult) at 6.00 pm yesterday!!
So far he has only had 3 doses, so there is not much to report except that he still has the smile on his face that appeared when his Benicar showed up in the post!!
I am now off to the Progress Reports / Updates forum to register Matt's progress. There are a lot of excited people at our place right 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: Tue Sep 13th, 2005 22:56 |
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Benicar Start date: 13 Sept at 6.00 pm
Dose: 20 mg q6h (Matt weighs in at about 40 kg, about half an average adult).
We are trying the 6.00 pm, 11.00pm, 7.00am, 12.00 noon dose times so that Matt (and his Mum and Dad) can have a longer sleep at night. Matt's doctor (Dr T) would like to take things slowly and see how he goes for 3 weeks before starting him on mino.
I asked Matt how he was feeling this morning and he said "absolutely, positively stuffed", but that is not unusual. He hasn't complained of nausea yet today (we are about 15 min away from his noon dose) so it will be interesting to see how he goes with lunch. His appetite is very poor (we don't have to worry too much about a low-carb diet just yet as he is low-everything) because he feels nauseated much of the time.
One thing we have noticed over the last couple of weeks as we have made the house darker and darker (I now understand the reference to cave dwellers that I have read about on MP.com!) is that Matt has become more and more light sensitive. When He first got his Noirs a few weeks ago he couldn't imagine ever wearing the 2%, but I noticed that he even left the 2% glasses on in the doctor's rooms yesterday. We have been using the keto cream for the last week when we have to go out, but we intend keeping Matt inside as much as possible from here. No more school for the rest of the year - we will do as much as we can with him at home.
Will report again soon,
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
Member in Phase 3
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Posted: Wed Sep 14th, 2005 19:17 |
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Dear Robyn, John and Matt,
Please be sure that Matt drinks lots of water, that will help the Benicar work better and keep him from getting dehydrated.
HANG IN THERE MATT, I KNOW YOU WILL MAKE IT!!!!!!!!!!!!! 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: Thu Sep 15th, 2005 21:10 |
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Thanks Barney - I passed your message on to Matt and he is drinking lots of water. I think you could ask him to jump at the moment and he would ask how far!
So, we are at Day 4, Benicar only, 20 mg q6h.
Yesterday there were definite signs that Matt might be starting to get some relief from his symptoms with Benicar alone. His periods of nausea seemed to be less frequent and not last for quite as long. He also told me that, while he didn't want to get my hopes up (so naturally they started flying around the ceiling!), he thought that his background headache might be just a little better - I also noticed that he didn't constantly ask when it was time for his next paracetamol as he usually does, so that must mean something. He also seemed a little less tired than normal. A couple of times he said that he felt dizzy, but it hasn't been a problem so far.
Having said that, he woke up this morning feeling nauseated, which is unusual, but it passed and breakfast was only delayed by a half hour or so. He is still quite cheerful and his Dad, who has been away for a couple of days for work, says that he thinks that Matt is doing a bit better. We will just take it one day at a 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
Member in Phase 3
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Posted: Fri Sep 16th, 2005 02:21 |
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Matt,
You are so sweet, thank you. We are all cheering for you and so very happy that you have started Benicar and are doing so well so far.
HANG IN THERE, YOU WILL MAKE IT!!!! 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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anne p
inactive member
| Joined: | Tue Jul 20th, 2004 |
| Location: | NSW, Australia |
| Posts: | 348 |
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Posted: Fri Sep 16th, 2005 06:18 |
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Good to see you have begun Matt. I do hope the Benicar makes a difference. It has improved my headaches and muscle pain enormously and I hope it does the same for you.
Hope all goes well and it doesn't take long to stabilise on the Benicar.
Best wishes
Anne
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Sx24years CFS/Lyme/ spinalstenosis abx long term Labs 25D,22-1,25D,23.46(unreliable)MP 7/01/05 PH.1.24/01/05,PH2.5/03/05 stopped MP Sept20 resumed phase1 Jan4/06/ somac40mgday Neurontin 600mg 3xday duatrol3xday imigran50mgprn panadeineforte prn
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robyno
Member in Phase 3
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Posted: Mon Sep 19th, 2005 21:16 |
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Thanks for your messages, Barney and Anne. I read them to Matt and he was very pleased – he will get back to you himself when he can look at a screen and read again.
Well, Matt has been on Benicar (20mg Q6H) now for almost 7 full days. He seems to be tolerating it very well. Matt thinks his headache has improved a little bit, though he says his head becomes "agitated" if he tries to get up too quickly. I imagine that is just the dizziness people report when they start Benicar. He also says his ears are sometimes blocked and he has never complained of that before. He is still very, very tired, though occasionally that even lifts a little bit (but not nearly as often as he would like!). We have not noticed any change in his Tourette-like tic, nor in his hour or so of blurred/double vision that happens not long after he wakes up in the morning. He still feels nauseated for much of the day. One thing we have noticed, however, is that his voice is more normal now, and not hoarse like it has been for the past 3-4 months. And he is amazingly light sensitive.
Our Dr intends waiting for a full 3 weeks before putting Matt on mino - I guess it doesn't hurt to be very cautious, particularly with a child. The only test he has requested is another vit D metabolite test to be done before he starts antibiotics (he had a test the day before he started Benicar, but we haven’t seen the results yet). Are there any other tests that we should let our Dr know about before Matt starts the mino?
I am curious to find out about members’ experiences with the ketocarazole cream. Matt gets very tired of not being allowed to go outside until it gets dark, so a couple of times this past week we have dressed him up like a bank robber (hood, hat, glasses, gloves) and he has spread the keto cream on his face and neck, and we have had a quick trip to the library or HiFi shop. Are we wrong to feel that Matt is not getting light exposure? We haven’t really noticed much change in Matt’s symptoms after this “exposure”, but it is really too difficult to tell as he is adjusting to the Benicar anyway and we have only taken him out a couple of times. So it would be nice to hear from some experienced keto cream users whether the cream actually works as well as it sounds that it should (there are probably lots of posts addressing this exact issue that I haven’t found yet, so apologies if that is the case).
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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Sydney Chris
Member in Phase 3
| Joined: | Fri Feb 18th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 439 |
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Posted: Mon Sep 19th, 2005 22:22 |
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hi Robyn,
The agitaged feeling Matt describes may well be hypertension (low blood pressure).. I have had this from day 1 on Votum, its never settled, but it's not too bad.. my doc advises that for most people it apparently resolves over a few weeks or so.
I've also had the ear thing.. a new symptom for me.. getting wax build up... to releve this I use Hoppi (I think this is the correct spelling) Ear Wax Candles (ava at Health Food shops) every week or so.
Look forward to hearing the advice re Keto cream.
All the best
Chris
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Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
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Meg Mangin R.N.
Research Team
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Posted: Mon Sep 19th, 2005 23:08 |
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Robyn,
I'm glad to hear that Matt is adjusting to the Benicar blockade without severe symptoms. Please tell him we are proud of him.
The PHASE ONE GUIDELINE lists some basic labwork to assess for a baseline. Matt's doctor will be aware if there is a need to run other tests for organ function such as kidney or liver. It will be interesting to assess his 1,25-D after three weeks on Benicar.
I can sympthasize with Matt feeling homebound. Time goes more slowly for a child and this is a major lifestyle change. It sounds like you have coped with this appropriately by limiting his excursions and covering up well. His increased photosensitivity is evidence of his need to diligently avoid sun/lights.
We have anecdotal testimonials to Ketoconazole cream's effectiveness scattered on both websites. We will combine them into one post as we find them and put it in the Avoiding Sun/lights thread. It is advisable to remember that K-cream is a minor part of adapting to avoiding sunlight and covering up is far more effective.
Matt's complaints of an agitated feeling in his head when arising quickly is due to his disease, not low blood pressure. This will resolve gradually as his inflammation resolves.
Best,
Meg
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robyno
Member in Phase 3
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Posted: Mon Sep 19th, 2005 23:38 |
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Thanks Meg - I will look forward to reading the keto cream posts. Will take my copy of the Phase 1 protocol next time we see our Dr and ask if he wants any more tests. He has done so many tests over the last couple of months that there might not be anything left to do!
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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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
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Posted: Tue Sep 20th, 2005 00:26 |
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Robyn
there are some Members who use Keto Cream and go to work. Here is where we are posting the Testimonials..
Barb ....
____________________
Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Sydney Chris
Member in Phase 3
| Joined: | Fri Feb 18th, 2005 |
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Posted: Tue Sep 20th, 2005 01:17 |
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Barb,
Can you advise when the K cream should be applied... the 'tinyurl' states it has the effect of limiting metabolisation POST exposure to the sun.
ie: If I'm driving to work should I put it on at home in the morning (pre sun exposure in the car) OR after the drive (40 mins each way) when I get there ? Also, do you know how often should it be reapplied ?
w' thanks.. Chris
____________________
Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
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Meg Mangin R.N.
Research Team
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Posted: Tue Sep 20th, 2005 01:51 |
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Chris,
How does ketoconazole cream work? states:
It is suggested to apply a thin layer of K-cream once daily to exposed surfaces such as face and neck just before sunlight exposure.
Best,
Meg
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Sydney Chris
Member in Phase 3
| Joined: | Fri Feb 18th, 2005 |
| Location: | Sydney, Australia |
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Posted: Tue Sep 20th, 2005 01:55 |
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thanks Meg.. was looking at a different url ( the research report)... Chris
____________________
Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
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robyno
Member in Phase 3
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Posted: Tue Sep 27th, 2005 23:28 |
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It has now been 15 full days since Matt has been on Benicar (20 mg Q6H). He is still coping well with it - the main thing we notice is that he is chatty at mealtimes again (he used to contribute about 90% of mealtime conversation, and that is starting to return!) and his voice returns to normal more often than not. His headache has improved, but not disappeared, and sometimes his tic is less frequent. But he is still very, very tired.
We have just received the results of the vit D tests that Matt had the day before he started the Benicar: 1,25D=30 pg/ml, 25D=21 ng/ml. So, his 1,25D has gone up from 22 to 30 since June, and his 25D has gone down from 27 to 21. But all seem to be within what the lab describes as the "normal range". It must be significant that the 1,25D numbers are going up. We will have Matt tested again next week.
Our Dr wants to start Matt on mino at the end of next week, presumably at 25 mg every other day from what I have read on the site. We are all a bit nervous, but will take it as it comes.....
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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BARNEY
Member in Phase 3
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Posted: Wed Sep 28th, 2005 00:34 |
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Robyn, John & MATT,
It is so good to hear that Matt is again a very important part of the conversation, that his voice is improving and that his headaches are lessening.
I am not surprised by the fact that Matt is very very tired. I was so very very tired during Phase 1, but started to gain some strength as I entered into Phase 2. It seemed like all I did in Phase 1 was rest and I discovered that rest is very important on MP.
HEY MATT, HANG IN THERE, WE ARE GOING TO MAKE IT!!!! BARNEY
____________________
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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