Everyone's got it

[notasperfectasyou]

Bob,

So here's the rub.......

And, I seriously would really, really, really ......... I'm dying to know why folks need to wait for certainty.

Life is like that. If we don't live life based on judgement very little gets done. Meaning, it's like the, "Honey, where would you like to go out to dinner?". "Oh, I don't know, where do you want to go?". "Oh, I don't know, where do you want to go?" - repeat.

I completely understand that everyone needs to make or not make decisoins. I suppose, I'm just asking ........ "what's so disturbing about ABX that everyone responds so apprehensively? It's not like it's bee stings or chemotherapy or accupuncture.

I understand that I have the advantage of seeing what it does first hand. Maybe that's it. But it kills me that we've found something that makes a real difference and when I share it all I find is a lot if indifference.

Not that I'm intending to be brash with you, I'm not. I'm so glad you're here to share the TIMS experience we all create together. I'm moreso expressing a general frustration with trying to share this amazing thing.

I just don't get it.

If you go to other MS places on the internet I'm sure you know there is little substantive content of folks aggressively trying to do things to make it better. But, here at TIMS we are collectively trying, asking and thinking about it. I understand that at other sites folks think I'm an idiot.

But, here at TIMS - have I travelled so far that I'm now distant from others with MS, even here at TIMS? When I first read Sarah's posts I didn't believe it and I worked at trying to understand what she was doing. I was completely about autoimmune theory. But, I read and checked it out. The hard part wasn't learning about, the hellish part was getting the scripts. But, here was Sarah sharing her experience of disability reversed. Kim is on that path now.

Why do people have to wait? Should I give up on trying to share this with others? Why should I bother? Does anyone really care?

I am frustrated. Ken

Thanks for listening to me, I really do appreciate it.

[Lyon]

oo

[notasperfectasyou]

As you mentioned yourself, a big barrier is the necessity of finding a willing doctor or worse yet, having to try to convince a doctor to disregard the safe and easy road and instead RX off label in a world that is terrified of promoting resistant bacteria.

I understand. All to well the doctor issue, but the resistance part is just a question of reading, reading and more reading.

Honestly? I'm not convinced enough nor knowledgeable enough to take on the task and my wife is the one who would I would have to convince at this point.

Fair enough. But, honestly I'm not prodding you. I do accept the argument that I spent a lot of time on this that I confess I was supposed to be working. Thanks for being a guinea pig for helping me understand.

Side topic, did you keep your Opexa stock? I see it's worked it's way back up to .49 cents a share at some point today. I KNEW I should have bought every bit I could when it was nine cents a share damnit!! My life is a long trail of missed opportunities that I recognized but didn't act upon when I KNEW that I should.

I don't think so. I sold mine for something like 13 cents. The investor perspective is that there really is no company there, just a lot of banter but honestly, if they sell the idea or any patents to someone else, the stockholders will not even see that money. Thank you for letting me rant in your thread. I hope it was not too inconvenient. Ken

[Loriyas]

Hi Ken and Bob
I wanted to jump in here if that's okay with you! TIMS has always been the one site that I have visited over the past years that remains open minded and the people on here are so willing to share their experiences without judgement. Most other sites are not like this one. As you both know, I, too, have gone the antibiotic route and have felt that it has been a successful journey for me thus far. And I journal about my experience here so that others can know what and how I am doing. That is how I learned about this protocol in the first place. So Ken, others may learn through our experiences and make decisions for themselves. Believe me, if this was not working for me at this point I would be looking at alternatives. And I would be learning about those alternatives through others experiences. But if others feel that my experience is convincing enough that they may feel they should give it a try then that is all good. I think since none of us know exactly what works then all any of us can do is try something. By providing the information on how that "something" is working for us makes this site all the more valuable. You know that saying "you can lead a horse to water but you can't make him drink"? That applies here, I think. You can only give all the information you have and let people make their own decisions.

Thanks for letting me chime in!
Lori

[cheerleader]

Yes, we all have "it."
Some say "it" is immune dysfunction related to the hygiene hypothesis and modernization.
Some say "it" is cpn.
Some say "it" is endothelial dysfunction and nitric oxide imbalance.
Some say "it" is a lack of vitamin D.
The docs say"it" is autoimmune, and here's your prescription.

It's just like religion....many paths, many languages, same destination. And we all know how arguing religion goes over.
The problem is, once we pick a path and find it works, we want to "evangelize" others. We don't understand why they won't follow! Until we have 100% scientific evidence (on G-d or MS) it's all supposition.

Human nature is to want to help others, but human nature is also to find our own way (I have a teenager, I see this in action everyday!)
Human nature keeps me checking in for new information....and shooting off my big mouth.
The bottom line...."it" is MS. And we all want a cure.
love y'all-
cheer

[jimmylegs]

don't forget some say at least part of "it" is nutritional biochemistry

[cheerleader]

don't forget some say at least part of "it" is nutritional biochemistry

oops! Sorry, JL. My bad. Obviously a big oversight
I also forgot to include atheists and agnostics!

Here'a a gift for Bob- in NY Times yesterday by Jane Brody...
Why Dirt is Good For You

In studies of what is called the hygiene hypothesis, researchers are concluding that organisms like the millions of bacteria, viruses and especially worms that enter the body along with "dirt" spur the development of a healthy immune system. Several continuing studies suggest that worms may help to redirect an immune system that has gone awry and resulted in autoimmune disorders, allergies and asthma.

These studies, along with epidemiological observations, seem to explain why immune system disorders like multiple sclerosis, Type 1 diabetes, inflammatory bowel disease, asthma and allergies have risen significantly in the United States and other developed countries.

"What a child is doing when he puts things in his mouth is allowing his immune response to explore his environment," Mary Ruebush, a microbiology and immunology instructor, wrote in her new book, "Why Dirt Is Good" (Kaplan). "Not only does this allow for 'practice' of immune responses, which will be necessary for protection, but it also plays a critical role in teaching the immature immune response what is best ignored."

[notasperfectasyou]

Fish eat worms
Sharks are fish
Sharks don't get MS

All makes sense now.

[Lyon]

oo

[Terry]

Ken,
I would be mortified if the ABXers stopped "evangelizing". I follow all the abx posts. I do not try it now for 2 reasons. One is that it does not seem to work for everyone, and the other is that I fear the dieoff reactions would cause me to be unable to work. Simple, real reasons. When I feel backed against the wall, it may be the route I take.
Terry

[notasperfectasyou]

Thanks Terry,
I appreciate your answer and your sharing it. I will say, from our experience, that the die-off is worse in the beginning, but we also did not fully understand all the things we could do to manage it like we know about now - like Ibuprofen. One other thing is that when compared to Novantrone, which completely knocks you down. I think Kim would rate bad die-off like 2-3x Avonex post-shot day. She is clearly functional on die-off days, but, yes it's harder in the first few months.
Ken

[CureOrBust]

Terry, from memory (I have been out of the "loop-" for some time now), only a small group suffer "die-off" from the start of the program (ie Bacterio-statics). This involves taking doxy and roxy, and some that have responded have said they do not get relapses on that simple combination. Most "die-off" is associated with the addition of Flagyl, which is added later, and can be delayed until it suits yourself. I have heard talk it would be possibly to simply use just these two, but it would take forever, as opposed to a few years.

Staying on the Doxy and Roxy only is an option if you wish to try the ABX protocol. And you can slowly build on these starting one at a time, tto see how you go. You are in control of the "die-off".

When I tried it, I had absolutely no noticeable reaction to these two antibiotics. However, I am one of the people who it did not work for. I would still suggest to others to "give it a go". Just be VERY VERYcareful with the Flagyl.

[notasperfectasyou]

When I tried it, I had absolutely no noticeable reaction to these two antibiotics. However, I am one of the people who it did not work for.

I find this interesting, but consistent. I'm sorry it did not have the desired result for you. I wonder if you have thoughts about that. Or maybe that's a different thread. Ken

[CureOrBust]

I wonder if you have thoughts about that. Or maybe that's a different thread.

I'm not big on off topic either, so i'll keep it short.

Thoughts:
1. My MS is not caused / controlled by a bacteria.
2. The bacteria has done its damage, and now a secondary process is in action. Without the need for bacteria.

[she-aardvark]

I think there's no doubt that MS is a multi-factorial disease. Thus us the reasob it's so hard to pin down. Yes we do find that the incidence and prevalence is much lower in tropical climates but now they've also discovered that a nematode (worm) found in most of the population in these climkates is protecting against MS.

Sure bacteria can be a factor but so can stress and vitamin D deficiency (which is extraorinarily high in MS) and fat intake. It seems that a huge proportion of the population is predisposed to get MS but it is only a combination of trigger fators that bring it to fruition. Thus U suspect that widescale MRI scanning would leave is no further foward in identifying the cause.