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Dr Trevor Marshall
Research Team
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Posted: Wed Nov 22nd, 2006 22:37 |
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This was the sign at the door of the hotel when we arrived in Adelaide. I took it as a record of the instant that I felt the "Australian Autoimmunity Foundation" became 'real', with a 'marketing' as well as 'corporate' image
Thanks to Robert, Robyn, Barb, Vicki, Chris, Ralph, Moxie, Peter, Rosa, and all the others who made the launch so successful.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19123 |
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Posted: Thu Nov 30th, 2006 13:42 |
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Notice to Members: YOU are our source of MP Drs for the Drs List.
Please notify us if you have a Dr willing to Rx MP who can be added to the Drs List.
Please notify us if you have found Drs on the Drs List who are no longer available.
Thank you, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| Cut D/exp July04| NoIR Aug04 Comm Beni| Sept05 off Thyroxine| CLICK ABCofMP
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RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
| Location: | |
| Posts: | 101 |
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Posted: Sat Dec 2nd, 2006 18:40 |
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see NEXT post re NoIR glasses..
and further Information as it is accessed - later in this thread. please read on.. thank you..
Health Insurance Benefit for NoIR glasses
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CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19123 |
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Posted: Tue Feb 27th, 2007 15:55 |
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Australian Autoimmunity Foundation Inc Membership:
http://www.ausautoimmunity.org.au/ for Information and to download your application form.
If you have been thinking about joining Australian Autoimmunity Foundation Inc perhaps now is a good time. Please ask by email for an application form. info@ausautoimmunity.org.au
Checklist: basic links for MP
You may wish to make contact with others in your area by private message.
Also available from the Australian Autoimmunity Foundation
Copies of the DVD containing the presentation Dr Marshall gave to the University of Melbourne last November. You may wish to take a copy to your Dr next visit.
You may wish to invite your Dr to join the PRIVATE SECTION FOR HEALTH PROFESSIONALS
Letter of introduction for your MP supportive doctor
Letter to Patients Patient Education Packets: suitable for doctors to give to patients they are introducing to the Marshall Protocol.
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Benicar®: Available by script for Olmetec x 120 tablets (is 4 boxes x 30 tabs) x 6 repeats. is available as an Authority script if your Dr will phone for it for you. SEE Benicar for Aussies Olmetec® tablets are now available on the PBS. They are exactly the same as the Votum tablets, with C15 on the back.
Olmesartan medoxomil - which is sold as the branded Benicar® in the USA and as Votum in Germany is also available in capsules (capsules are not PBS) in Australia at Compoundia: see below.
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Australian Members please note: Most of your MP supplies are available from the Compoundia Pharmacy. details below.
*Olmesartan medoxomil - which is sold as the branded Benicar® in the USA and as Votum in Germany is also available in capsules (capsules are not PBS) in Australia at Compoundia. see also re Benicar PBS availability above.
*For medications you need to give them a few days notice. They will be able to compound the medications/antibiotics into smaller doses if you prefer not to have to divide them yourself.
*NoIR glasses in stock so you should be able to get them fairly quickly. Appropriate sunglasses are essential. A basic purchase would be 2 pairs of NoIR sunglasses -10% indoor and 2% outdoor with optional extra pair 40%.
See PROTECTING YOUR EYES
Health Insurance Benefit for NoIR glasses
* make Invisible Zinc Cream.
*Milk of Magnesia (for constipation) Compoundia are able to provide us with 500mg Capsules rather than 250mg of Magnesium Oxide. (ie take only 3 Capsules to produce the desired result within 24 hours.) The price is: for 50 Caps = $25.00, or 100 Caps = $35.00. (Exp December, 2008) Inge.
Here are their details: You can contact them by email and / or phone call.
Compoundia
Australian Compounding Pharmacy
16 St Mangos Lane
Docklands VIC 3008
email : bertfrigo@compoundia.com
Website http://www.compoundia.com
Phone 03 96702882
Fax 03 9670-9615
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Quercetin for Aussies may be helpful once established in MP. Not recommended in early stages.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| Cut D/exp July04| NoIR Aug04 Comm Beni| Sept05 off Thyroxine| CLICK ABCofMP
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RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
| Location: | |
| Posts: | 101 |
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Posted: Thu Mar 8th, 2007 20:07 |
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MELBOURNE PATIENT MEETING
Victorian MPers have the opportunity to meet up at the end of this month on the morning of Saturday March 31. We’ll be showing some video highlights from the MP Conference held last year in Los Angeles.
Time : 10.00 am to 11.30 am Saturday March 31
Phyliss Hore Room - rear of Kew LibraryCotham Road, Kew.
Wheelchair access and parking adjacent.
Open to Foundation members and anyone else interested in meeting other
MPers.
Robert Townsend
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CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
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Claudia
Member in Phase 3
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Posted: Thu Mar 15th, 2007 08:38 |
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More Junk Science in Australia! Did anyone watch Catalyst on TV tonight?
Apparently there's a study that has been going on for a long time -- at University of Queensland -- where they are trying to connect "Vitamin D" deficiency to Schizophrenia, because they reckon babies born during winter / overcast weather are slightly more likely to become schizophrenic later in life. Nobody seems to be asking whether it might reflect the time of year they were conceived! Or perhaps the sunlight a mother gets at various stages of gestation. Or, if perhaps schizophrenics might have all had their first vaccinations in the winter, when they might have had other immune challenges.... and on and on, with other questions left unasked. So many assumptions made.
The laboratory studies all use rats - which are noctournal animals. They deprive mother rats of sunlight (NO effect, obviously) and all food sources of "Vitamin D". Then they note that the baby rats had brain abnormalities similar to those observed in humans with schizophrenia. Well DUH... they made sure the pregnant rats were deficient but have they successfully proved that human mothers of schizophrenics were deficient? Well... not exactly!
Surveys of human maternal blood: "measured maternal 25-hydroxyvitamin D 3 levels in maternal sera taken during the third trimester and banked for over three decades." The babies born (now 30 years old) to mothers with low (serum) "vitamin D" were found to be more likely to have schizophrenia - BUT of course they have not studied the (hormone) 1,25D of the mothers. If we could investigate these mothers' blood further, I suspect their 1,25D would be high, indicating Th1 disease and high rate of conversion, resulting in the "deficient" serum D. It would follow that their babies could be infected with the mothers' pathogens, either in utero or later, in childhood, which is consistent with the noted familial aggregation of schizophrenia. That's not the only possible scenario, but one of the many NOT being investigated.
What about the baby rats, you may ask? Well, the only behavioural difference reported by the scientists, now several years into their research is: "increased spontaneous hyperlocomotion." Yes, I think that means they run around a lot.
I am very afraid that this and other poorly researched studies in Australia will lead to the government mandating "Vitamin D" supplementation in our dairy products too, as in America. We need to lobby against this - we must get the truth out! I found another atrocious document (paid for by the Australian government) claiming, among other things that "Breast milk is a poor source of Vitamin D even in mothers that are replete." Where is this leading....? .......................................
Please, fellow MP patients in Australia, join our [url= http://www.ausautoimmunity.org.au]Australian Autoimmunity Foundation, Inc[/url].! This is how we get the attention of the government. The more members we have the better. Please ask by email for an application form [info@ausautoimmunity.org.au]
March Newsletter of Australian Autoimmunity Foundation Inc - PDF file is available
and the NoIR glasses are available from there also.Last edited on Sat Apr 19th, 2008 02:09 by
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MP Phase1 23Mar_06; Phase2 July 10_06; Phase3 Nov 4_06. Dx Thyroiditis (Thyroxine); arthritis; glaucoma; CFS (1988-92);Kidney & bladder probs. Feb06 1,25D=43.3; Aug07 1,25D=27.5; Feb06 25D=44; Aug07 25D=28; Nov07 25D=36; Mar08 25D=16.4
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Sydney Chris
Member in Phase 3
| Joined: | Fri Feb 18th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 436 |
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Posted: Mon Apr 30th, 2007 02:24 |
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Call to Sydney MP members.
Hi All..
Meg Mangin RN will be touring our great city in May and would love to catch up for an informal dinner in the evening on 15 May.
Could all interested members please contact me via IM for further details..
With thanks
ChrisLast edited on Mon Apr 30th, 2007 02:25 by Sydney 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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robyno
Member in Phase 3
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Posted: Mon Apr 30th, 2007 21:44 |
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I’m afraid I have some sad news to report concerning Elizabeth (ElizaH), one of our Aussie MPers – she passed away last Thursday, 26 April 2007, in a nursing home not far from where she lived. Her son, Alex, was with her when she finally gave up her fight with sarcoidosis.
Elizabeth had a bout in hospital earlier this year with a collapsed lung. I had thought, as had Elizabeth, that her collapsed lung was the root cause of her recent very tough time and, with that behind her, she would begin to turn things around and start to see improvements in her health. But that wasn’t to be. On visiting Elizabeth when she returned home after her hospital stay I was shocked to find her very disoriented and unable to cope with her meds or being home on her own, despite the home help she had organised and that had worked so well in the past. Alex was attentive as always but he too had seen a marked deterioration in her mental state and was at his wits end trying to decide what to do for the best. In the end, he and Elizabeth’s MP doctor felt the need to call an ambulance once more and have her taken back to hospital. This time she was in not in a fit state to manage her meds and a break from the MP was necessary.
I am not sure of the reasons for Elizabeth’s mental deterioration. No UTI was apparent as far as I am aware. Maybe she had had a slight stroke? I am only guessing. I imagine that the bugs that were the cause of her sarcoidosis were having a field day, to put it into the vernacular. I would have loved to have seen her have another go at the MP but she didn’t get that chance.
Elizabeth had such high hopes for a return to health and I feel very sad that it did not work out that way for her. She was a very sick woman when she started MP, maybe just too sick.
Elizabeth lost her battle, but I know how important being part of the MP family was to her in her last couple of years. She was a fighter and gave it her best shot and I feel privileged to have known her. I will miss her. My sympathies go out to Alex, who looked after his Mum beautifully, and to Edgar, Pat, Melinda and the rest of her family. Elizabeth’s funeral is at Gungahlin Crematorium in Canberra next Thursday – John and I will be there, representing her MP family.
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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Ralph
Member in Phase 3
| Joined: | Wed Dec 8th, 2004 |
| Location: | Sydney, Australia |
| Posts: | 278 |
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Posted: Mon Apr 30th, 2007 22:02 |
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Hi All,
I am saddened to learn of Elizabeths passing.
Can I express my sincere condolences to Elizabeths family.
Ralph
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Lungsarc1/3/05fatigue,bod/ache,irr/heartbt/ no meds| Avoid D, Light/sun, Noirs, 24-7-06 25D=8/1 25D=39 4-9-06 25D=14 BeniCom 2/4/06 q6h Start Ph 3 12-2-07. going out more. Jan 07 25D 10.8,Oct-25D 8 1,25-23Dec07 25D-16.8 1,25-81 22 Jan08 D-12.4 1,25-
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Sydney Chris
Member in Phase 3
| Joined: | Fri Feb 18th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 436 |
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Offline
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Posted: Tue May 1st, 2007 05:10 |
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here here Ralph,
Robyn,
Please pass on our condolences also.
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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Vicki SA
Member in Phase 3
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Posted: Tue May 1st, 2007 08:35 |
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Sad News. I started the MP soon after ElizaH and so we had some contact along the way.
Pass on my condolences to her family.
Regards Vicki
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ME/CFS 2000, Splenectomy, 8/05 - 1,25D51,25D16.5, Ph1 12/05, Ph3 1/07, Zoton 40mg, 2008 - NoIRs, hat, cover with light r/t Work 3/7, NoIRs, hat, cover well, invis. zinc for outside, low lux home, Sept07 25D6.8, Mar08 14!
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PeterM
inactive member
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Posted: Mon May 7th, 2007 01:11 |
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For those, who want to get maximum benefit from private health cover, you can compare premiums and levels of cover here:
http://www.privatehealth.gov.au/dynamic/searchbyfeatures.aspx
There are huge differences in extra health cover regarding non-PBS drugs (like Olmesartan). With prices of $120 per 100 or $300 per 300 capsules from Compoundia Pharmacy and 8hrly usage it appears to me that
http://www.stlukes.com.au provides the best return with $50 per prescription and a max. of $600 per year at a premium of $31.70 per month. There is a 2 month waiting period.
Cheers
Peter
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CFS(2004) orthostat. intol, photo sensit, recurr vocal fold granuloma Mar07 D25=18 D1.25=50, 20Apr07 Ph1, 13June07 Ph2, 22Aug07 Ph3, Oct07 Transition lenses (NoIRs too dark), covering up outdoors D25=10
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Moxie
Member in Phase 3
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Posted: Mon May 7th, 2007 08:32 |
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In Queensland we have Credicare http://www.cua.com.au
They provide the same level of rebate. I think you can get Credicare cover in other States as well. I have been a member for many many years and about twice a year I do a price comparison and always stay put with this health fund...
Moxie
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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PeterM
inactive member
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Posted: Thu May 17th, 2007 19:08 |
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Some good news: Olmesartan prices have come down at Compoundia pharmacy.
See Benicar for Aussies..
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CFS(2004) orthostat. intol, photo sensit, recurr vocal fold granuloma Mar07 D25=18 D1.25=50, 20Apr07 Ph1, 13June07 Ph2, 22Aug07 Ph3, Oct07 Transition lenses (NoIRs too dark), covering up outdoors D25=10
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RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
| Location: | |
| Posts: | 101 |
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Posted: Thu May 17th, 2007 22:33 |
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MAY NEWSLETTER NOW AVAILABLE
The May Newsletter of the Australian Autoimmunity Foundation has been emailed out to members. If for some reason you have changed your email address in recent times please drop us an email at [info@ausautoimmunity.org.au]
so that we can amend our records
Robert Townsend Last edited on Sat Apr 19th, 2008 02:11 by
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CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
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RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
| Location: | |
| Posts: | 101 |
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Posted: Sat May 19th, 2007 20:54 |
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PROBLEMS WITH RECEIVING EMAILS FROM
For anyone who has had problems in receiving emails from the Australian Autoimmunity Foundation, whether for NoIR orders or for our newsletter, it might be worth setting up our email address as a "trusted" address in your address book.
Many of the larger email service providers such as Hotmail, Yahoo, Gmail ,and even Bigpond and Optusnet will routinely filter out from your inbox any email which is sent out in bulk to a large number of undisclosed recipients.
We hide the addresses to which the emails are sent to respect members privacy, so if your email service provider is filtering out our emails we do not become aware of the problem because the messages are not bounced back to us as undeliverable messages.
To make it easier for us to communicate with you it is probably a good idea to make sure that our email address is captured in your address book, and preferably set up so that our email address is considered as a trusted address. As I personally do not use any of these email services I cannot advise you individually as to how that can be done with your particular email provider.
Robert TownsendLast edited on Sat Apr 19th, 2008 02:12 by
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CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
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Grace
Advocate
| Joined: | Tue Sep 14th, 2004 |
| Location: | Australia |
| Posts: | 387 |
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Posted: Thu Jun 21st, 2007 00:28 |
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Regarding NoIRs,
I would like to hear from those who's private health fund, has refunded them for their NoIRs. My fund Medibank Private with super extra cover, will only refund from a registered optical seller eg if the frames and lenses were put together.
However if I can show that other funds are refunding I may put it to them,requesting that they match.
This is the third time I have tried with medibank private.They would not refund from overseas,nor the Blind society and now from AAF.
My motive is not only for myself but for future MPer's
Therefore I would like to hear from anyone who has got a refund .You can pm if you wish.Who knows I might swap funds!!!!
Thanks....Grace
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CFS, oct04 Ds=26/48, 4/07=7/24 MP PHI 2/05, PhII 6/05, PhIII 6/06, beni Q6H, Noirs rarely inside no nature light low watt, outside 40%10%, Hat, all covered, no gloves, paracetamol
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Claudia
Member in Phase 3
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Posted: Fri Jun 22nd, 2007 11:47 |
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I don't have private medical insurance, so this doesn't relate to my situation, but I do get my prescription glasses tinted here in Australia, by Carl Zeiss Vision Australia, which trades as "Sola". http://www.sola.com.au/
I can use their darkest brown ("claret") tint, which is in their catalog as Skylet Sport. So if you can use them, like for indoors, TV, computer work and so on, perhaps your insurance will pay.
Of course, if you don't use prescription glasses - lucky you!! 
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MP Phase1 23Mar_06; Phase2 July 10_06; Phase3 Nov 4_06. Dx Thyroiditis (Thyroxine); arthritis; glaucoma; CFS (1988-92);Kidney & bladder probs. Feb06 1,25D=43.3; Aug07 1,25D=27.5; Feb06 25D=44; Aug07 25D=28; Nov07 25D=36; Mar08 25D=16.4
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Moxie
Member in Phase 3
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Posted: Fri Jun 22nd, 2007 19:04 |
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Grace
There is someone in Oz who received a refund for his NOir's. I will have to look for the thread. I think his fund was Grand United which, from memory, has another name now.
Credicare in Queensland will only pay on lenses from optician.
Moxie
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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Sydney Chris
Member in Phase 3
| Joined: | Fri Feb 18th, 2005 |
| Location: | Sydney, Australia |
| Posts: | 436 |
| Status: |
Offline
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Posted: Sat Jun 23rd, 2007 00:40 |
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Hi Grace,
I received a refund from NRMA Health for glasses, with a supporting letter from my treating Dr stating they were for medical purposes and as such were PESCRIBED...! (ie perscription glasses)
Hope that helps..
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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