There will be a webinar on progressive ms.
http://www.nationalmssociety.org/multimedia-library/webcasts--podcasts/index.aspx
We might join the discussion and steer it to cpni?
- Login or register to post comments
- Email this page
- Printer-friendly version
Having just seen several of their "educational videos", I'm not sure I would be a polite participant. It might be similar to when I went to one of their meetings, gestured to my cane and my walker ( with other people), and raised my arms and one leg and said "Look what I can do now since beginning antibioticsi!". They took away my microphone.
YES - we should participate! We will, unfortunately, be in the barn, but I can "view later" apparently.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Katman-
An identical scenario happened to a patient of mine attending a lecture by a Cambridge academic at an MSi centre. He mentioned the benefits he had from antibioticsi and was more or less told to shut up.
'So evidence that fits with our beliefs is quickly waved through the mental border control, while counter-evidence must submit to close interrogation and, even then, will probably not be admitted. As a result, people can end up holding their beliefs even more strongly after seeing the counter-evidence. . .
'Part of this attachment may be because there is a sense in which our important beliefs are an integral part of who we are. To bidi a belief adieu is to lose a cherished part of our identity. . .
[Cordelia Fine: The Vain Brain The Guardian 26th January 2006 Pp G 2 16 - 17 ]
We MUST not do as we are told! The more I hear of these truly disgusting people and their greed, the angrier I get. This (me) is one who should be dead or in a wheelchair with a feeding tube.
This is the reason I have a "hero list", which includes my husband Richard, soldiers, police and fire men and women, Ghandi, Yguner, Dr. Charles Strattoni, and you, among others. Please continue your wonderful work. I hope you all are rewarded someday - you deserve it.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
I did think that Calabresi was a decent chap until last year when he told someone to keep an eye on ampyra which might improve your motor skills slightly and might make you a bit less fatigued. I decided he was well named.
The Cambridge academic who David mentioned above has become a born again Christian and refused to talk to me on the British MSi society website.....................Sarah
A Journey through Light and Shadow
Why? Are you now not worthy of saving?
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
Presumably not. I wasn’t suitable for Campath thank goodness, so I must have been really wicked in previous life.....................Sarah
A Journey through Light and Shadow
DW, I think in some cases our adopted belief system is a reflection of who we aspire to be, rather than who we are. As a species, we are still governed by 'gang' culture and we see the fruits of this in all walks of life. We are inclined to disregard truth in an attempt to maintain our position in the heirarchical structure we have adopted as our own.
Isn't it time we 'grew up'? There are people of integrity out there - but not too many.
Wife (spmsi) pre abxi problems;
Balance, speech, tremors, swallowing, walking, 'cogfog', fatigue. LDNi 3mg 3 years, PEG tube 2 years.
Currently on 200mg Doxyi, Azithromycin, a bucketful of supplementsi and just starting third metroi pulse
Everyone, my husband goes to an MSSociety support group for caregivers. While none of the caregivers there have expressed an interest in our site (I'm not a poster child like Rica and Sarah), the doctor who runs it was extremely respectful of the protocol when my husband spoke about it. It is my husband's suggestion that we participate in the Webinar and enter the protocol into the discussion. We should be on the record and not fearful of internet abuse.
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
The trouble is that it starts at 7 in the evening, your time which is midnight our time. I am brain dead by then. I do know someone who isn’t, though. Nancy, are you taking part? ...................Sarah
A Journey through Light and Shadow
Yes, I guess so. And Sid. I wish Rica would. And Mac. And Norm. Etal.
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
Great idea to do it! But we are just heading to the barn to do the milking. PLEASE do it!! Please do a blog and tell us all about it.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.