No, no, no. Don't think you're argumentative at all. I think you are intrigued. No conflict with anyone, none at all. I'm happy to share.

But, if anyone would like to debate about it ........

Just wanted to say here that I did the ABX protocol for almost a year and it did absolutely nothing for me. I could not tell that I was even taking anything while on it. The drive for me to get to the physician who prescribed it was 14 hours each way, so I was serious about trying it and it failed to help me.

You among others have been told that it does not work for everyone and no one knows why. One guess might be that the ones it works for actually have the CPn while others that it doesn't work for don't.

During the lifetime of having this disease I have checked out everything I know to check out and there is nothing to this day that treats SPMS with the possible exception of LDN.

So your statement that trying new stuff can get old did not set well with me, especially since again, you do not have the disease and have not had to cope with all of the crap this disease throws our way for years.

Most of us here have tried all of the meds available to us and would try more if there was more to try. I am aware of most (probably all) treatments being discussed on the net as are most others here and we have to decide for ourselves which ones make sense and which ones don't.

gmi

That's cool that you tried it! Which ABX were you on?

That logically makes sense to me. Did you do any of the tests for before you started the protocol?

A lot of folks swear by it. I think it's great when folks find something that helps them feel better.

I cannot pretend that I have MS, that wouldn't be very genuine. I certainly do not intend to upset you or anyone here.

Exactly, it's all about self determination. Suppose someone here (for entirely unrelated reasons) started sleeping with their bed tilted on an angle. Suppose they found after 4 weeks that they were walking better. Wouldn't you think it would be a natural to get online and tell others? That's how I see it. Kim and I have a realy cool experience to share and we're not looking to force it on anyone, we just think there are others who don't know about it that might be helped by it. Ken

Thanks Becca. It really does look like a 2 part problem. I respect the desire for wanting to completely restored to a pre-MS state. I doubt we'll get one solution for the two part problem. But let me put the original question up again:

What would it take to say that someone is cured or being cured of MS?

Meaning, in an condition that presents so many variances which is compounded by a seemingly two-part (at least) process (myelin attacked and myelin's inability to regenerate) under what conditions would you personnally feel cured or more simply under what conditions would you personnally feel that you were in the process of being cured?

In some illnesses modern medicine goes about removing things, but not necessarily replacing them. Colon cancer comes to mind. Cutting out cancer might halt progression, but leave behind permanent damage. I don't know if cancer survivors consider themselves cured. Ken

What would it take to say that someone is cured or being cured of MS?

Quite honestly, I don't know. To be cured to me would mean that the disease (causes, symptoms, etc.) would be gone and not return or little chance of returning.

However, do I feel I am in the process of being "cured?" At this point, he!! yeah! I look back to where I was 4 years ago to where I am now and there is a big difference. There are some things that have not repaired, rewired, or whatever but I can walk now without falling or hanging on to things, have better coordination, and don't have to use my cane daily. For me that is impressive and I am happy about it. That 1st year was scary not only for me but my kids, DBF, and family. I did not have a long enough break from exacerbations (every 6 weeks give or take) for my body to even have a chance to heal (IMO). I finally got the chance once things calmed down. Copaxone??? Maybe???

Don't get me wrong, I have set backs and exacerbations but comparatively to that 1st year of serial flares, 1-2 flares a year is far better than 6 to 7 major ones a year. Of course, if you ask me this tomorrow I may give a completely different answer depending on how I feel when I wake up.

Realistically, I know I am not "cured." What ever the cause for the MS is still there. I'll have another exacerbation and/or flare of some symptom. It will never be gone and rears it's ugly head from time to time and I still have symptoms on a daily basis. It's still there.

A little bit OT but it amazes me the "positive" terms they use when talking about not only MS but other diseases as well. Cure is positive and something we all hope for but at this point, scientifically, not possible for us. A cure can be temporary making it a negative, which is where I think many of us with RRMS are - temporarily cured. MS is such a tease.

Progression is a positive term but NOT to us MSers. We don't want progression, we want regression - a return.

And then there is the infamous "Hug." What the heck is that positive about? Hugs are supposed to be nice and warm and fuzzy and make you overall feel good. It is NOT a hug and you will find me often referring to it as the MS Vise grip. This I deal with on a daily basis to varying degrees of pain and it just doesn't feel the same as a hug from a loved one.

A cure, to me, is that they can come up with a vaccine or something so that others don't end up getting it ... or at least that they can stop it in it's tracks.

Even with cancer, the best they can do is stop it ... and if they do, a person is "cured". Any damage that it caused in the process, like the loss of a breast or ovaries, would not be possible to regain.

I do not consider that we would necessarily need to regain function once it's lost, in order to be considered "cured".

Cherie

tkrik,
You and other's make an excellent point that you might be symptom free but continue to know that somewhere in the future "something might happen". It's always fantastic to have a regained ability and I suppose it's really about the endurance of what was returned.

Please correct me if I have misinterpreted, but are you suggesting that you can have exaserbations and feel that you are being cured simultaneously? This idea isn't clear to me.

You sound very positive and that is a huge plus for anyone with MS. Thank you for your reply,
Ken

I can't say that I am cured of MS as I know it will never really be gone. Whatever caused it, is still there and will pop up with fury at some random moment. I think what I was trying to say is that I feel cured of some symptoms through some sort of repair or rewiring. I can walk now without a mobility aid, with the exception of longer walks. This was a huge accomplishment and took about a year for me to get there. So something repaired/rewired to allow me to do this. Hope that makes sense.

Great question!

I'm thinking a "cure" would have to disable the inflammatory mediators that are responsible for MS. . . a combination of monoclonal antibodies, perhaps?

?Susie

Cherie,

You really hit on a lot in a little bit of words, I need to learn to do that.

I boil down many of the thoughts -
1) Does a cure require having the ability to prevent/vaccinate others not yet diagnosed?
2) Does a cure mean you must have a ready antidote for someone after the diagnosis?
3) Does a cure mean you are returned to your pre-illness state or is it acceptable if there is irreparable damage left behind?
4) What if the damage is significant?
5) Is the cessation of progression enough to call a treatment a cure?



Too bad you can't set up a poll on this website. Thank you Cherie for your thoughts. I wonder how each of us has a different experience that effects the degree of change we would require of something called a care. Ken