thisisms

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

thisisms

Postby bromley » Sun Feb 12, 2006 11:20 am

Dear all,

'This is MS is an unbiased, unaffiliated site dedicated to eradicating Multiple Sclerosis. We offer an open-minded approach to *all* potentially viable treatments, ranging from the FDA-approved disease-modifying drugs such as Copaxone to alternative treatments such as Low Dose Naltrexone'.

The great strength of this site is that it is not associated with any ms drugs companies or any particular therapies. Anyone visiting the site can look into a range of therapies e.g. Campath, LDN etc etc.

A few of the 2000+ users of this site have reported good success with abx on the theory (not proven) that CPn might be the cause of MS or cause in some cases. I suspect that there are others who have tried the abx regime and seen little benefit, but those individuals tend not to report.

What concerns me now is that anyone joining the site is straightaway told to visit another website - CPn Help - by the few reporting good results on abx.

Thisisms is not a mouthpiece for any one regime (until that regime is shown to be the cure). The abx regimes has not been trialled and to date I have seen no evidence from those that have reported such good results that their neuros also agree with the reported dramatic results.

There is a real risk that some may take the abx route and not licenced therapies, which although not great in terms of efficacy have been properly trialled.

Let those joining this site find out for themselves about the different therapies available / in the pipeline rather than using this site as a way of re-directing individuals to a website covering just one regime.

I would love CPn to be the cause of MS and the abx regime to be the answer. But the reported good results of a few do not constitute scientific evidence yet the voice of these few is drowning out other possible therapies which may have benefits.
Last edited by bromley on Mon Feb 13, 2006 4:23 am, edited 1 time in total.
User avatar
bromley
Family Elder
 
Posts: 1889
Joined: Fri Sep 10, 2004 3:00 pm

Advertisement

Postby sojourner » Sun Feb 12, 2006 1:43 pm

Ian,

I must respectfully disagree with your assessment of Thisisms becoming a mouthpiece of any one regime. I found this site in 2004 after my husband's diagnosis, and I cherish the knowledge (all of it) that I gained from it.

It helped me understand what supplements might be helpful, what we could expect from progression, the ins and outs of Avonex, Tysabri (which my husband had three infusions of ) and the abx regimen. I also learned a bit about LDN and statins.

People looking for info would still find out all of this today. You're correct, there is more info on this site about abx then ever before, but that is simply born from the fact that there are many more people attempting this therapy. Like it or not, this is where the abx (unproven, anecdotal as it is) regimen seeded itself and it continues to grow.

Now, I have noted that cpn people (sounds a little strange!) do not hound regulars here on the forum who are not interested in abx, but I can assure you that when one believes in something so profound as a possible cessation of this wretched disease it will be shared. For heaven's sake, just with the improvement (yes, I mean improvement) that I have seen in my husband over the last month and a half, I want to shout from the mountain top.

If a new individual (a progressive one contemplating chemo, especially) comes here, I will promise you that I will point them in that direction--no apologies. This is not cult- like--this is real life with a lot at stake!

And Ian, if you stumble across something that stops your MS in its tracks ---please, please share it. Many would be grateful

Finally, here's an informed opinion from a totally uninterested party--one who is very respected in the Lyme community---Dr. Steven Phillips the president of the International Lyme and Associated Diseases Society. At a conference in May 2005 in Farmington, Connecticut he stated that there should be large scale treatment of MS with antibiotics.

Here's the whole link:
http://www.personalconsult.com/articles ... event.html

My point is that if one actually looks into this idea of MS being caused by a bacteria there are others besides Sarah and David and Vanderbilt and those at CPn Help who believe this. Just look!

I respect you, Ian. You know you remind me of my husband (same age, same month and year of diagnosis, we both have kids) so I do not want to offend, however, I feel you were unfair in your posting. You have been around the abx wheel and don't want to do it--so be it, but afford other people the opportunity to at least check it out. And allow those who believe they are improving to share this wonderful news.

Sorry if I said too much--emotional, I am today! Lexy
User avatar
sojourner
Family Member
 
Posts: 87
Joined: Mon Dec 12, 2005 4:00 pm

I too must respectfully disagree.

Postby LifeOnTheFence » Sun Feb 12, 2006 3:45 pm

I am very grateful to this site for all I have learned. I have been lurking here since my diagnosis almost a year ago and it took me a long time to even look in the Abx section.

Prior to that, I learned a great deal from the posters, including you, Bromley. I want to say I followed many of your links and read the research. There is a great deal of intelligence here. I also learned a lot about supplements and have added a few to my own regimen, gradually.

Eventually, I began looking into Abx and then registered. The posters were very kind to me. They sent me to the website in response to my needs and made me feel welcome here.

I remain on my Rebif and continue to respectfully regard other points of view while I believe for myself, I am on my way out of this wretched disease.


I am grateful to you all.
Karen
Age 50


Sinus Symptoms dizziness/MRI shows multiple lesions 2002,
"Wait and See."
Dx 3/05
Rebif 4/05
David Wheldon Protocol 1/06
User avatar
LifeOnTheFence
Getting to Know You...
 
Posts: 13
Joined: Mon Jan 02, 2006 4:00 pm
Location: Philadelphia area

Re: thisisms

Postby NHE » Tue Feb 14, 2006 1:43 am

Thank you Bromley, that was said very eloquently. 8)

NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3144
Joined: Sat Nov 20, 2004 4:00 pm

Re: thisisms

Postby HarryZ » Tue Feb 14, 2006 5:21 pm

Ian,

I've been around several MS Forums for the past 5-6 years and I don't think that I can agree with your assessment of any readers here being pushed in the wrong direction when it comes to abx treatment.

Ever so often, on ALL of the MS forums, certain topics come up and cause a huge stir of comments and opinions. I would think that most readers can determine for themselves whether to pursue information they read here or totally ignore it.

I will say that ThisIsMs is the best site that I visit when it comes to trying to explain the scientific and factual details about this disease and current therapies. Of course we are going to get disagreements and a few nasty comments directed by some but as a whole, none of the other sites match the scientific content that ThisIsMs does.

Just my opinion and two cents worth.

Harry
User avatar
HarryZ
Family Elder
 
Posts: 2320
Joined: Tue May 25, 2004 3:00 pm
Location: London, ON, Canada

thisisms: abx

Postby Shayk » Tue Feb 14, 2006 6:54 pm

Ian

I'll echo NHE, you said it eloquently. 8) I agree with you.

I am very grateful for people such as yourself and a few others who contribute and post on topics other than abx. MS remains a disease with no known cause and no known cure IMO. Thank goodness Dignan lets us know about other alternatives in the pipeline. :)

Sharon
User avatar
Shayk
Family Elder
 
Posts: 768
Joined: Fri Feb 06, 2004 4:00 pm

Postby Arron » Wed Feb 15, 2006 7:54 pm

MS remains a disease with no known cause and no known cure IMO.


Precisely. And ThisIsMS continues to be a site that encourages PATIENT KNOWLEDGE above all else, which leads to patient empowerment.

I believe Ian's concern is that new members to our community may not perform the appropriate due diligence on *all* the various therapies available to them (from the NCRABs to clinical trials to antibiotics to LDN and so on), *if* they are immediately referred to other websites which have much more concentrated foci than we do.

Now I'm sure you know that many sites do not even allow external links; but I on the other hand encourage them. This is MS is not here to win a popularity contest among websites-- we're here to (try to!) help improve the lives of the community via hope through knowledge. Knowing where to find relevant, deep information on various topics, particularly those non-profit sites where some of our most vaunted members are enjoying success, is critical.

As such, in a general community like this, in the end the rule to live by would be to simply be cautious not to evolve to the point where This is MS becomes a recruitment board for one specific treatment or another (until there is a definitive cure). If that were to happen, it would ultimately threaten the vitality of our continued forward progress in unearthing the clearly multi-faceted intricacies of this condition. As you all know, this is a very difficult war and we need all hands!

Everyone here has the best intentions in mind, period. That is not in doubt. This thread, however, brings up the point that it is useful to remind all of our new members that to our (unfortunately limited) understanding, MS may very well be multiple illnesses under one heading, and what works for one may not work for another-- until we know conclusively otherwise.

Therefore education about ALL treatment modalities is *critical*-- even if an effective treatment for a particular subsegment is found, there will almost undoubtedly be others that will need our help, and we veterans will be in the best position to help them. At the same time, if someone is having success with their treatment, by all means we need to hear your story as it is invaluable-- a critical tool to the very evaluation of the multitudes of therapies that we hold so dear.

Fight on, with my continued appreciation and awe at all of you.

-a
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
User avatar
Arron
Volunteer Moderator
 
Posts: 892
Joined: Sun Feb 01, 2004 4:00 pm
Location: California, USA


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users