| Author | Post |
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keithw
Member
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Posted: Wed May 20th, 2009 23:27 |
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I can't get any meaningful info on Retinitis pigmentosa and MP.
Perhaps if some of our stage 2 or 3 MPers read this they may help?
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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Barney
Moderator
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Posted: Thu May 21st, 2009 00:21 |
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Keith,
If you want to know if anything is mentioned on any of the the 3 MP sites, go up to right hand corner of this page and put the words in Google and click on Search all MP sites, (which I did for you and it came up with nothing) that is because there is nothing even in Phase 2/3.
So if you will go to Medline Plus (it is the Nat'l Library of Medicine and NIH), that will tell you about it.
It says that it from damage and that you don't go completely blind from it.
So, I would say the same thing Trevor told you....it is damage and he did not know if MP would help or not, but you are welcome to try.
Hope this helps your friend.
HANG IN THERE, WE WILL MAKE IT!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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keithw
Member
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Posted: Thu May 21st, 2009 01:15 |
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Thank's Barney,
I did the google search and wiki too,
Suggestive but not conclusive.
I will pass it on and leave it up to him
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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keithw
Member
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Posted: Fri May 22nd, 2009 00:45 |
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Missed a pill last night.
A bit sore today, shoulder and chest pain!
Since starting the Olmetec I have noticed the knee pain has reduced considerably and I can walk for longer.
Still a lot of numbness above the knees, but I can live with that.
I have gone cold turkey on the "sweet annie", and I think the Olmetec has replaced it without ill effect.
One more week and I can start reducing the pred again.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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marion villa
Member
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Posted: Fri May 22nd, 2009 04:26 |
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| uuuuuuuhhhh!!!!
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RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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keithw
Member
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Posted: Fri May 22nd, 2009 06:33 |
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Just the girl to ask,
I was reading "foods to avoid" and calamari is conspicuously absent.
Deepfried with a hint of Jalapeno is an old favorite of ours,
Any advice?
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
|
keithw
Member
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Posted: Fri May 22nd, 2009 22:21 |
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Bad night again last night.
Late taking the olmetec due to restlessness and leg pain but back on track now.
It seams the nights of worst muscle pain coincide with the movie and chocolate nights, and so I checked the posts but it doesn't mention pain.
The chocolate is Cadburies Old Jamaica rum and raisin.
Anyone else had this?
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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marion villa
Member
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Posted: Sat May 23rd, 2009 04:32 |
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sorry, no calamari!!! no seafood at all.
regards
marion
____________________
RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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keithw
Member
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Posted: Sat May 23rd, 2009 06:04 |
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Hmm,
Well, that's clear enough.
Now the good news.
Saw the immunologist this morning, He was very pleased with my overall condition, and especially my blood results which was the best in 10 years, normal normal not lupus normal.
He has read the MP doctors info and I gave him the ER and Diet sheets, and told him to watch the video's.
He said if I am in as good condition in six weeks He will spread the word.
Since he is a Professor, and runs a large area from a major hospital I think this will make a big difference to doctors who are reluctant to look at MP
Next week I see my Neurologist, and I will drag him on board too!
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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Barney
Moderator
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Posted: Sat May 23rd, 2009 06:22 |
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Keith,
Thanks for all the hard work with the docs and so glad you are helping to get them on board.
Thanks!!!
HANG IN THERE, WE WILL MAKE IT!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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keithw
Member
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Posted: Sun May 24th, 2009 00:42 |
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Thank's Barney,
I just wish I could have started the program sooner.
I don't mind introducing new treatments to my doctors, but I shouldn't have to.
Medical information is available to doctors via the net same as us, news groups report it and it disappears into hyperspace if a patient doesn't spot it.
We have to do the research ourselves, then print all relevant info and shove it at the local GP who is too busy to read it.
It's met with skepticism and professional snobbery, no wonder so many people go doctor shopping.
Ah well, at least in Australia the drugs are cheap, Just found out Zith is available as a liquid, 40mg /100ml.
But that's next year.
Enough whinging for today.
Keith.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
|
keithw
Member
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Posted: Sun May 24th, 2009 01:22 |
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By the way, I was impressed by Dr Marshall producing a chart showing all the major illnesses and which gene affected them.
Is this chart available? I cant find it on Google and I would like to show it to my Neuro next week.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
|
Barney
Moderator
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Posted: Sun May 24th, 2009 03:22 |
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Hang in there Keith, MP will be worldwide accepted in the near future.
I will try to find that chart and give you a link.
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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marion villa
Member
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Posted: Mon May 25th, 2009 00:25 |
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keith:
good!!!
your doctor is a jewel, lucky you!
____________________
RA,SLE,skin problems fatigue and pain. noirs,well covered if going out, PHASE 3MP| My Story| ABC of MP| Bacteriality|
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keithw
Member
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Posted: Mon May 25th, 2009 02:11 |
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You will hate this!
Rod (the GP) Just handed me his entire stock of Olmetec samples.
We might have a convert there.
Tomorrow the Neuro, hope I can find that chart in time but if not I will still sort him out!
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
|
Barney
Moderator
|
Posted: Mon May 25th, 2009 02:49 |
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Keith,
Is this the chart:
here
Plus this is the whole site that goes w/the chart...if you want to print it out:
http://AutoimmunityResearch.org/transcripts/WCG2008_Keynote_Transcript.pdf
Let me know if this is it.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
Last edited on Mon May 25th, 2009 03:02 by Barney
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
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keithw
Member
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Posted: Mon May 25th, 2009 04:25 |
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Got it,
found the info in the Vimeo Prague presentation,
I L Goh. slide 7.
A bit indistinct but it will do.
Thanks everyone.
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
|
keithw
Member
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Posted: Mon May 25th, 2009 08:23 |
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Dropping to 9mm pred today, I saw a weaning of steroids forum but I can't get in.
Does it still work? and is there a quick link?
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
|
Barney
Moderator
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Posted: Mon May 25th, 2009 12:24 |
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Keith,
See if this works............
Essential Information About the MP (Required Reading) > Weaning From Steroid Medications
HANG IN THERE, WE WILL MAKE IT!!!!BARNEY
____________________
Sarcoidosis diabetes asthma| loss r/kidney| hysterectomy osteoporosis| Start MP 1/1/05| My Story| ABC of MP| Bacteriality|
|
keithw
Member
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Posted: Tue May 26th, 2009 02:30 |
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Nope, perhaps if I stick a benicar in the USB port...
____________________
S.L.E. CNS Vasculitis. Avascular necrosis both knees, Osteoarthritis both shoulders.
.25D=20 10 oct 09. phase 3 starting 20 | 25D=18 (Mar10)
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