I wanted to speak to the topic of credibility with this blog. I have been bombarded for 15 years by wellmeaning relatives and friends with every herbal, new age, shamanistic, health hut therapy that has shown "promising" evidence of a cure for MSi. It has been a massive pain in the butt to say the least. I have examined some of the theories with somewhat of an open mind and discovered money and greed was the prime motivation for most of these approaches. I have always remained skeptical because I have had my own theories all along on why I was ill and none of this rang true.
Until my husband landed on the CPni connection via David Wheldoni's website. He found this whilst searching through much of the "sponsored" websites that are just an excuse to link to a product or treatment that is a glorified snakeoil and an excuse for bilking money from desperate ailing souls. He knew, and now I know, that this was something very different. After two weeks of reading, studying, discussing and researching, this rings true for the first time for me.
What I wanted to communicate is that we have discovered something that has for the first time given us hope. But even in sharper contrast to the other theories is the credibility that is given by the lack of financial motivation. I am amazed at the calibre of support, the wisdom and the commitment of the people that are managing and giving their time generously to this protocol including the administrators and supporters of this site. I see no links to "snake oils", no sponsorers to foot the bill and that lends more credibility in my mind than the protocol already offers in it's facts and sensibility.
So a very loud THANK YOU to David Wheldon and Sarah for starters, as I see nothing but concern and generosity of spirit and a desire to spread the message of health and wellness and it was through their crusade we discovered this treatment option. Thanks to the committee of volunteers that administer this site with nothing more than donations members provide. Then an equally resounding thanks to all the committed individuals, too numerous to mention that spend time supporting and encouraging and giving such wonderful advice and facts regarding this process. I am fairly new with this and have just gotten the thumbs up from my GP to start any antibioticsi that I want for as long as I want and he has taken the material about David Wheldon's protocol to study as that is the route that I wish to follow. I know that this CPn help site will be of paramount importance for support and knowledge and have already learned so much from you all. Keep up the amazing work all of you who give of themselves here. There are people who depend on you and find you incredibly credible.
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SPMSii< Supplementsii & NACi, Doxyii 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagylii 1500 mg x 3 days once per month
Sorry, double post. (Not
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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
TodyBear, You have put this
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
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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
Todybear- Thanks for this.
Todybear- Thanks for this. I think this issue of credibility through lack of financial gain needs recognition, especially in the cases of Dr. Stratton and Dr. Wheldon.
Dr. Stratton's Vanderbilt patents were specifically done to put this treatment and all of the careful research behind it into the public domain where anyone could have access to it. There is clearly no profit in it for him or Vanderbilt (one can't even benefit from stock prices with generic medications!), and the amount of clinical detail is so great that it is "giving away the store" in any case. Had he not done this it might have been that David Wheldoni would not have found his work and carried it the next step.
Similarly, Dr. Wheldon not only has developed and maintained a website on his methods that is a model of lucid, clear presentation of the case for Cpni in MSi, but is also an absolutely clear set of treatment guidelines accessible to everyone. Again, as you note, with no profit motive present. Both David and Sarah have offered their guidance to many people without charge of any kind. It is this last, and the lack of any commercial interest whatsoever that maintains the credibility of David's presentation.
On www.cpnhelp.org I committed us to no commercial advertisements, even those that might support the existence of the site without member funding. Time and again the membership here has reaffirmed that the lack of any commercial flavor has made cpnhelp a trusted place. It's now permanent policy! We are careful to block any posts that have a flavor of commercial promotion for anyone.
Beyond that, I want to compliment the culture we have created here that is enourmously helpful and generous, willingness to repeatedly clarify the basics for new people who are overwhelmed by the amount of information as well as by their illness as an example. It is also a culture that has a place for entertaining the complexity of the science involved, for those of us into that sort of thing.
It is also a culture open to discussing views that challenge our own sacred cows. We support spirited discussions of issues as well as knowing when we are over the line of our basic mission. We also have maintained what, to my mind, is the correct attitude when communicating this approach: that we don't know everything, that we have found it has worked but that doesn't mean everyone will, that new information will modify or even replace what we are doing now, and that we don't know everything. This leaves us free to present our own experience and our own argument for this approach, and leaves the questioner free to make up their own mind.
I know this is the "culture" here because members correct each other, and sometimes even themselves, when a thread crosses the line in any way. All without my intervention (big sigh of relief). No censorship needed or wanted here. My compliments to all of us.
CAPi for Cpn 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Todybear, thank you for
Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 50 pulses NC USA
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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 53 pulses LDNi Rifampin 8/08 again NC USA
Thank you for this,
Thank you for this, Todybear. I agree with MacK and Rica--very eloquently put. And with Jim, in his gratitude and appreciation of Ret. Colonel, Dr. Charles Strattoni for patenting his life’s work. Making it available for all, worldwide. Providing it for doctors in countries, other than the US, such as Dr. Wheldon, to collaborate and expand upon. Yes, you are correct in your appreciation and acknowledgement that these doctors, Sarah, Jim, and many generous others, are voluntarily contributors. Not salespersons of any kind. And, that they are to be thanked for all that they do. I echo your sentiments. –Minai
RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA
Tody, I'm pleased you find
Tody, I'm pleased you find us supportive and approachable. There are times these days, when we have so many new member when I wonder whether we will be able to maintain this level of support. We have managed so far and with the help of people like you we will continue to manage. We do what we do because like you, we are grateful to the people who have given us hope and support and the only way we can pay back is by helping others.
Someone, I think it was Zdenicka, who said we were very disciplined. I suppose we are in certain respects, thanks to Jim's careful, diplomatic tugs on the rein from time to time, but on the whole we like a laugh like the rest of the world and sometimes we can be downright disruptive, especially Jim.
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Thanks Todybear, Jim &
Thanks Todybear, Jim
& everyone, great comments. I was reminded this past week, having visited an MSi site that is HIGHLY sensored; even if you comment on what you are doing for yourself!
We are blessed. Occasionally, we need a little reprimand or reminder, but all in all, we are very disciplined, caring & loving group. I see others who started after me who are also now able to help out with some support too.
Sooo many questions, lol, soo many brain befoggledy!
Great work Team MAD CAPpers
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#14 1000 mg X 5 days 9-19-08Thank you TB, this was
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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Tody, thank you so much for
Tody, thank you so much for this articulate and well rounded endorsement of our community. Your post echoes the feelings I formed when I arrived here. Right at this moment, I am in the process of putting the idea of a CAPi treatment to someone with MSi. I now have this to show them and hopefully it will be just the thing to do the trick.
Thanks
Robert - MS for 16yrs. CAP since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli 4th pulse.
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Robert - MSi for 16yrs. CAPi since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli 9th pulse.