Last first phase and first extension visit

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Postby Loobie » Wed Dec 12, 2007 3:42 pm

I'm sorry to hear that Lars. I truly hope you feel better. I hope you make it through the steroid blues. They never did shit for me either.
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Postby Lyon » Wed Dec 12, 2007 6:22 pm

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Postby Loobie » Thu Dec 13, 2007 5:32 am

My experience was something like this. It didn't do shit for my eyes, but on another note, it did make me want to rip my skin off. They just made me jumpy and made me grind my teeth and clench my jaw alot. I didn't like it so much that I stopped right after the IV part (1000 mg.) and only took two days of taper. Whatever bad is supposed to happen when you don't taper didn't happen to me, so I won't do them again unless my Dr. says that he's sure they will help with whatever's going on.
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Postby Lyon » Thu Dec 13, 2007 7:23 am

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Postby Loobie » Thu Dec 13, 2007 8:03 am

Thanks Bob,

I had similar expectations based on what I've read. However, I am an extreme Type-A personality and once the first plunger is pushed, I don't expect anything, but I will feel that I am now "doing everything that I can". That is the way I've always been; if I have even a smidgeon of control over it, I want to make sure nobody is sitting on their keester. I think that is why this has been a hard transition. I mean the acceptance part. Every problem I've encountered in my life I simply beat until it's gone or I realize it can't take anymore beating and I give up. Maybe that's why I've always been a plant manager. At any rate, understanding that I can only control certain things about my MS like my diet and exercise level, it became really hard when the exercise part (specifically the running) got taken away. I was like "hey, that's what I'm doing to 'fight' this and now I can't do that", so it's been hard but I'm making progress.

All I know is that if I feel like something is holding it up, I stick my nose in and see what I can do. Since I have no control over this at all, I just figured I'd bug the hell out of them and make sure that there is not even a day left on the table where someone could be pushing this towards the syringe that's going to be going in my arm.

Being this way has always been a blessing professionally, but in terms of accepting this disease, it has been a curse. It would be much easier (I feel) for me to accept if I didn't have the view that ANY problem can be solved if you pound it enough. This MS problem is simply not in anyone's control, and I simply need to learn how to live with that understanding. That's not easy for someone with my personality type, but I need to get to acceptance if I'm ever going to live with MS.
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Postby Lyon » Thu Dec 13, 2007 1:16 pm

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Postby Loobie » Fri Dec 14, 2007 6:07 am

I think so as well, but I also think it may be as complex as figuring out the human genome. So many environmental, dietary, hereditary, lifestyle and other issues all in their "unique by person" package. I think looking for one cause like what causes the flu is an exercise in futillity because that would have already been stumbled upon. That is why I always reserve my comments when people are "blaming" mercury fillings, or herpes, or Vitamin deficiencies. It just isn't that simple, but I think any or all of those could potentially aggravate the condition.

The point I'm trying to make is that whoever can figure out how to exploit the universal trends that are present in MS is going to be the one who figures it out. I mean 99% of people have filllings, probably 75% of people have some form of the herpes virus, the EBV virus or other pathogens and we all know not that big of a percentage of our population has an autoimmune disease. BUT, there is that seeming trend about how the prevelance of MS goes up the further you get from the equator. I don't know any other trends that seem to be all encompassing like that, but that is why this is so maddening. There are just so many exceptions and so few of the trends that go across the board. My big hope is that there are just a lot of people a whole lot smarter than me working on this like their live's depend on it.
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Anomalous data

Postby lyndacarol » Fri Dec 14, 2007 7:26 am

Loobie, you wrote
BUT, there is that seeming trend about how the prevelance of MS goes up the further you get from the equator.
and I agree there are those exceptions to the "rules" that I think are very important.

Why has MS been almost nonexistent among the Inuit (Eskimos) and the Suomi (Lapps)--folks who live very far from the equator? I think more can be learned by thoroughly examining these anomalous data, not simply dismissing them as irrelevant, than by studying other aspects thirty-six times over!
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Postby Loobie » Fri Dec 14, 2007 8:01 am

LC,

Well said! You said what I was trying to say in like half the sentences! I agree wholeheartedly. Studying those that should be more susceptible but have no occurences could be invaluable. The new Michael Crichton book "Next" dealsl with that as it pertains to cancer and the "guy" who is immune because of his unique genetics. Thank you for making my point so much more eloquently!
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Postby MaggieMae » Fri Dec 14, 2007 8:16 am

Lyndacarol,

If I remember correctly, studies attribute it to the fact that they eat fish - omega 3's. Areas that are farther from the equator (lower Vitamin D), but whose inhabitants eat a lot of fish have rates of MS lower than areas farther from the equator who do not eat fish.
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Postby Lars » Fri Dec 14, 2007 10:48 am

First of all I would like to second Loobies post subject in a shorter version,"Amen".
Which leads to Lyndacarol's post. Maybe no one thing can be singled out as a cause, but the combination of things seems more likely. Like all of you, I have read articles targeting everything from type A personalities, viruses, toxins, latitude etc. and most recently and article making a connection between Lymphoma and MS. Maybe this is all about how our immune systems deal with a combination of issues that would never be expected to harm anyone singularly. Like pieces of a puzzle that have unfortunately fit together to paint this picture. Do toxins on their own cause MS, probably not, mercury, diet, herpes virus, genetic background, vaccines, most likely no, no, no, no. But what about the combining the right elements? I think we will find someday that the answer is yes, yes, yes.
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Postby Loobie » Fri Dec 14, 2007 11:11 am

All I have to say is if it targets Type A personalities, I am F*****!.
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Suomi

Postby lyndacarol » Fri Dec 14, 2007 5:46 pm

MaggieMae, you wrote:
If I remember correctly, studies attribute it to the fact that they eat fish - omega 3's. Areas that are farther from the equator (lower Vitamin D), but whose inhabitants eat a lot of fish have rates of MS lower than areas farther from the equator who do not eat fish.


Yes, fish and their omega 3s are given the credit; but I begin to wonder about that "conventional wisdom."

I have eaten fish twice a week for years and taken 6 grams of fish oil routinely every day with no effect. But most importantly here, the Suomi live inland--they raise and herd caribou! They are not eating fish!

My frustration comes because I think these cases need to be studied inside out and upside down! There is a lot to be learned from these cases that don't fit the conventional wisdom.

I begin to doubt that omega 3s are effective in all we are told they are.
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Postby Loobie » Sat Dec 15, 2007 7:10 am

Well my extension seems to be getting delayed - by Opexa! I don't know if they are actually "delaying" it, but they haven't ordered my blood draw yet and they were supposed to this week. They've had my test tubes to screen since I started this thread. They need to get off their ass. My research coordinator gave me this stuff about them not wanting to dose me or even make the drug up if I'm having a relapse. I told them I just got done with one a few weeks ago and if they don't stop f***ing around I may have another one. I have stabilized since my last relapse.

I got all torqued because I told him that my hope (even though it may not be a valid one) was that I could maybe experience some recovery in my legs. My eyes, bladder and bowels have been screwed for years now and I can't even really imagine that they would improve even if Tovaxin stopped everything 100%. But I told them that since the leg issues have been 'recent' that I was hoping that maybe we could see some natural repair there. I really went off on him and said if you guys don't get this done, my leg issues will no longer be recent.

This is where my Type A (sometimes known as asshole) kicked in. I went to his office and demanded a phone number for Opexa. I know that I probably would get nowhere even if I talked to David McWilliams, but my point being that the holidays are coming up and everything seems to be getting pushed back to "we'll do it after the New Year" so I was just trying to get him off his ass. I told him I would go donate my own blood, put it in a cooler and drive it to Texas myself if I didn't hear something by Monday. I am actually prepared to do that if I don't see some action. I don't think it would do anything, but maybe it would prove a point. I got it out of him that even if we drew my blood today that the drug probably wouldn't be ready for 6-8 weeks. So we are talking freaking late February now before first shots. I don't know if there is any validity to my expectation that something that has happened more recently would be something I could most likely get back if the Tovaxin works, but I can't stand people procrastinating; especially when, potentially, my health hangs in the balance.

I don't want to be this pissed. I signed up for this shit so I could get the drug no later than the end of '07. When I signed up my MS was just not going fast at all and an 8 week delay would have seemed like nothing. I guess I need to take a deep breath and be thankful that my disease is giving me a bit of a break right now. I'm just scared that it's going to be short lived and I'll have another GD relapse before they get around to drawing my blood. I'm not even going to tell the SOB's even if I'm in the middle of one if they ever get around to drawing my blood. I'm very disillusioned with this whole process right now. Once the trial started, "the protocol had to be followed to a T". Well I did my f'ing part all last year. Now they need to do their's. There is a part of me (the cautiously paranoid part) that says this all has something to do with their financial situation but I'm probably just being a neurotic Nancy.

I just can't relate to this kind of inefficiency and lax attitude towards what I consider target dates and deadlines. If I behaved this way in the automotive industry, my company would be out some serious cash. Maybe I'm just used to being in the position of being able to hang something over someone's head to get action like I can at work. Resigning to the fact that I'm 100% powerless over this whole process is not something I've been able to do since all the delays have been happening. I was the 10th person in the IIb phase, so maybe they will have all this shit worked out by the time everyone else gets done with their first year, but it's obvious that not a one of these MF's understand a thing about the dynamic of actually having MS. I guess I shouldn't expect them to since they don't actually have it, but they are awful close to it so you would think they would have somewhat of an understanding.

Sorry for the long post; I need a joint.
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Postby Lyon » Sat Dec 15, 2007 9:21 am

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