Also getting better on antibiotic regime

[Notdoneyet]

Mind if I chime in. This is, after all, my thread. Let's talk about me again!

I'd like to repeat what I wrote in a private message to Mackintosh:
I am happy to have reached this stage (intermittent treatment), but as the moniker suggests, I'm Notdoneyet. I have had some major improvements since my last exacerbation. May 8, 2004 and progression seems to have stopped. While I'm suggesting other people try antibiotic treatment, because of the risk-reward, I have no MRIs to compare, or other analytical evidence to suggest I'm cured. I'll be a lot more convinced if I can go five years without a relapse, (I've not gone more than three since dx in 1984), or I can run, even ten steps. That being said, I'm still in a really good frame of mind, the best in years and I'm starting to make some plans for the future. That is a big thing!

Colin

[SarahLonglands]

Hiya Mac,

(And Wiggy and Robbie,)

Its nice to know that I am real, having had a pretty rough week as well, due to the health of two friends. Two and a half years ago I felt as hopeless as you did last August. Three years ago nearly to the day I felt that there was nothing really wrong with me. I couldn't walk awfully well, my right hand kept giving out, but what the hell, this had happened before, it would soon clear up. We were sitting in a hotel room in Leiden watching Saddam Hussein's statue being brought to the ground by a load of happy Iraqis and all seemed well with the world. To me, at least. Six months later, of course, my hand was completely paralysed and I got the fateful diagnosis. Soon after that David started me on the antibiotics.

So let us all four wish everyone well, including the sceptics. Spring should really be the start of the new year, I think, and many more still to come.

Sarah

[Arron]

I've had a rough week being publicly taken to task and privately brutalized.

Lest anyone assume that this was me that has privately brutalized MacKintosh, it was not (I was the public one, though).

MacKintosh, that sounds pretty horrific, and I'm sorry that you were subject to it-- and you should let me know via private message if it was anyone at our site that attacked you. Brutalizing someone is far more serious than simple disagreement, which is as far as we allow "confrontations" to get here.

That being said, I feel it might be necessary, though tedious, to also state the following: If any readers have walked away from this thread with the skewed and entirely incorrect opinion that I'm now somehow against antibiotics, please step back and take a wider view. I created the antibiotics board itself as a response to Sarah's inspiring story, and I lost a lot of good members defending the early antibiotic movement's right to share their stories and opinions. I would do the same for any other promising treatment (and have).

We (of course!) will continue to cover antibiotics stories with equal weight to any of the NTCRABs or other alternative treatments. We are excited at the success of any member, however it comes, but we must be vigilant to to balance the impact those stories and attitudes might have on others until risk/reward data becomes more concrete. I hope people understand that this is the critical point-- and is particularly true when dealing with alternative therapies that are, by necessity, based largely on anecdotal evidence, and sometimes the early vapors of clinical success.

For our part, we will continue to do our best at exposing MS'ers to all the various options available to them, and sponsoring intelligent discussion that hopefully helps illuminate those choices. Certainly, I will need to use my judgment to tell me when those discussions require moderation in one way or another-- as I believe this one did. More than likely, the necessity of those decisions will be quite obvious to all.

I hope that this marks the end of the annoying part of my job as moderator (as I'm sure most of you do as well ;) ), and that we can return to spending 100% of our energies on moving the state of knowledge amongst our community upward and onward. The bottom line is that we believe one is practically never out of treatment options, and as long as that is true, then one is never bankrupt of hope.

With all my best wishes for good health to all,
-a

[bromley]

Arron,

Thanks for your thoughful response.

This issue with the abx fan club has been simmering away for some time.

I don't know what was said privately to Mackintosh, but I reserve words like 'brutalized' to the events that took place in the concentration camps.

Anecdote doesn't help with:

So let us all four wish everyone well, including the sceptics.

I like most on this site are sceptical about all current treatments until one is identified which addresses this disease in all its types and stages.

Arron and those behind the scenes do a tremendous job and it's a pity if their time is taken up with squabbles which usually involve CPn / abx followers. The squabbles result from unsubstantiated claims and an almost religious undertone. You have a site dedicated to CPn - why not let the rest of us discuss the other 150 treatments available / in trial and other issues relating to this disease?

Ian

[SarahLonglands]

Colin,

I would like to wish you all the best for the future as well! You are one of the first people to contact David and you have stuck with it. I'm going to send you a PM later , because I have just heard the doorbell go. We are expecting lunch guests, one of whom should now be in as bad a condition as I would have been.

Take care,

Sarah

[wiggy]

Colin,
Congratulations - great news!!!!!!!!!!!!

[Jimk]

Colin- this is very good to hear. You've been in it for the long haul, and I'm very glad you have seen such results. You've out-persisted a very persistent bug.

[Shayk]

Jim

I am both surprised and disappointed by your post. It could start yet another abx squabble that I personally don’t think is necessary or helpful.

I don't see how a "squabble" on any of them prevents discussion in others.

Some of my thoughts on this…

I am tired of the squabbles.

To the extent that the primary interest of ThisIsMS members is abx, and I think it is, with wholehearted support, at the acknowledged expense of other members, I become less interested and/or motivated in dedicating any time and/or energy to participate in other discussions. Instead of posting, I can spend time off line on advocacy issues re: MS.

I am tired, worn down, and worn out, of what I perceive to be the negative labels and lack of respect afforded anyone who decides not to try abx. “a fine excuse to point a finger,” and “skeptic” are but the latest.

ThisIsMS members have branded me as stupid and an idiot on the cpn site. Several abx posters have repeatedly bragged about their high IQs on ThisIsMS—not explicity stated, but by implication, anyone who doesn’t decide to try anti-biotics is I guess pretty stupid, or, by implication, people who take abx are far superior to anyone who doesn’t pursue that choice.

Equally offensive to me personally, and my personal reaction is one of feeling brutalized, are repeated assertions by several abx posters that anyone who might choose not to take abx is a) very happy to have MS and b) not interested in doing anything about it.

I for one am not particularly excited about participating in a message board where, as a member, I am repeatedly, explicitly or implicitly negatively regarded and labeled as a skeptical, stupid, idiot, happy to have been diagnosed with MS and with absolutely no interest in trying to better manage it. A skeptic I am, a stupid idiot, perhaps, but happy to have been diagnosed with MS and with absolutely no interest in trying to better manage it I am not. I experience those particular accusations, though not aimed at me directly, as emotionally cruel and abusive, very hurtful and stressful.

Sharon

Colin--this is your thread. Congratulations on completing the protocol and your recovery. I'm glad "you're not done yet". Keep going.

Sharon

[Notdoneyet]

While I appreciate the congratulatory sentiments of Wiggy, Jim and Sharon, I had no part in starting this current debate. It has completely taken over my thread and, I wonder if I can have it back. I'm not interested in stifling free speech, but holey moley Rocky! I used to direct people to this thread to read my antibiotic log, but I guess I won't any more! Aaron, do you think I should close it, or could someone please start a new thread to continue the discussion?

[SarahLonglands]

Please, everyone, this is Colin's thread and should remain so. Like Sharon I am tired of squabbles, but if people don't want to talk about antibiotics, it seems obvious to me that they should just stay out of the Antibiotics and Regimens forums. I started to post in the Regimens forum, later the Antibiotics forum was started by Arron because he perceived a need. If a thread is started in the General Interest section about, say, the infective cause of MS, then people using antibiotics can't be expected to keep out. I think the recent bout of over-enthusiasm is over, so please let's just get back on an even keel.

Colin, you will have mail later.

Sarah

[Arron]

Sarah, I don't think you meant this, but I have to note that the Regimins forum will remain open to all, not just antibiotics postings. Historically, the initial motivation for that particular forum was for people taking Low Dose Naltrexone, often coupled with multiple other adjunct therapeutics, to report their progress.

Sharon's concerns are very legitimate and extremely serious-- please keep them in mind as you post (this is for all, not just abx'ers). No one should feel privileged enough to insult the intelligence or intentions of another, directly or indirectly, just because they don't believe in a particular approach-- just as one does not in turn assail the logic behind trying the given therapy in the first place. I have a personal revulsion to people directly or indirectly accusing others of wanting to be sick or allowing themselves to get worse, and will not hesitate to step in if I'm alerted to such situations.

There is definitely a palpable sense of 'I know something you don't know,' coming from certain members-- and that's to be expected when one feels they have found a treatment that actually seems to work for them and views others as "crazy" for not giving it a shot-- but they are most definitely NOT crazy! For an obvious example, don't forget the not insignificant portion of people allergic to any given therapy. I'm getting weary of being a broken record, but there are likely many, many valid approaches to treating what is apparently a multi-faceted disease. At this stage of MS research, This is MS views no single treatment above others and is dedicated to representing all viewpoints.

Sharon, I do *not* believe that the primary interest of This is MS members is antibiotics, and certainly we are not attempting to sponsor this attitude if you perceive it. There are as of today 2600+ members, of which a small minority are trying this particular alternative, just as with the many other alternatives. They do tend to be vocal and thorough, which are good in terms of evaluating an alternative therapy, within the limits I've recently discussed recently ad nauseuem. I cannot control what This is MS members who happen also to be members of other MS support sites post elsewhere, but that behavior will be viewed as absolutely unacceptable on this site.

Colin, this is indeed your thread, and I will figure out a way to pull out these wonderful messages ;) in due time. It's not quite clear how to break it out, so in the meanwhile you may want to start a new thread with your latest postings.

[Jimk]

Sharon- You are right. It was not appropriate of me. Please accept my apology, also to others. I did not contribute to healthy discussion by my comment.
Your report of ways you have been treated concerned me, and I want to respond, but don't want to continue to highjack Notdoneyet's thread. I will post my response in the Antibiotics category, as it's probably then more "sequestered" and less interfering with other concerns. If I can edit my earlier post to remove the inappropriate sarcasm, I will do so. My apologies to all.

[SarahLonglands]

Arron, I should of course have said that if people don't want to talk about antibiotics, it seems obvious to me that they should just stay out of the Antibiotics forum and antibiotics threads in the Regimens forum. My mistake but I was tired and especially hungry. I am eight hours ahead of you, after all.

So now I am going to read for a little while and go to bed.

Sarah