Asthma

REDHAIRANDTEMPER · Post by **REDHAIRANDTEMPER** » Wed Nov 22, 2006 1:07 pm

bob,
no but have come to the conclussion unless you hold the dr hostage and threathen his life they dont tell ya to much...lol..j/k

Lyon · Post by **Lyon** » Wed Nov 22, 2006 1:24 pm

CureOrBust · Post by **CureOrBust** » Thu Nov 23, 2006 12:15 am

Lyon wrote:On one hand Jamie's normal neuro kind of snubbed her nose at Tovaxin because it isn't a standard treatment and on the other hand I see two perfectly respectible and competant neuros are excited about it.

My neuro didnt think he had heard of it. Maybe he new it by its old name. Still a worry.

Lyon · Post by **Lyon** » Thu Nov 23, 2006 3:45 pm

Chris55 · Post by **Chris55** » Fri Nov 24, 2006 8:23 am

My daughter had severe childhood asthma and continues to have upper respiratory and allergy problems. She was so allergic to milk she finally went on a product ($7.50 a can that lasted one day!) that had nothing from an animal in it and was treated with charcoal for allergenticity. She could not eat solid food until she was about 7 months and that was limited to very bland foods. She has always been severely underweight, extremely strong, very high energy but always sickly. Just prior to her first relapse she lost a huge amount of weight in a very short period.

My daughter is the one currently on an unconventional treatment for a strep infection. Both she and her husband were required to take the treatment, throw away toothbrushes, etc. An interesting point...one of my son-in-law's former girlfriends was also diagnosed with MS.

Lyon · Post by **Lyon** » Fri Nov 24, 2006 9:13 am

Muu · Post by **Muu** » Sat Nov 25, 2006 2:02 pm

Hello Bob.
What was most impressive about my medical history was that there wasn't much of it. I was rarely ill - either as a child or adult. Often described as having the constitution of a carthorse! However, I did have measles as a child, a virus that left me run down for a couple of weeks as a teen (EBV?) an one nasty chest infection. I've had MS over 20 years (ON at 20) but the MS symptoms were hardly noticable until I developed foot drop. Now SPMS but symptoms v mild, EDSS 1.5 and no noticable progression.
My big brother has RA.
Muu

Lyon · Post by **Lyon** » Sat Nov 25, 2006 2:31 pm

ljm · Post by **ljm** » Sat Nov 25, 2006 10:38 pm

Bob, just curious (but also a bit tired//long day//lotsa hiking)

When you said

The situation is REALLY dire if a researcher at a major university hadn't even heard of what is considered one of the most hopeful of treatments in trial.

It started me thinking. Where exactly WOULD a neuro hear about Tovaxin?

I don't recall anyone actually referencing a journal article about Tovaxin, its not coming up in any PubMed searchs. MY first information was courtesy of young "Tim" who provided some miraculous and amazing posts at thisisms in Spring/2005.

Around the same time, "Tim" was busy emailing his story to Accelerated Cure; starting a thread at the Care/Cure forum: posting his story and links at MS Musings; jumping into discussions at BrainBlog: chiming in with his story at JSumption thread.

In fact, google on tovaxin is about 1/2 generated by "Tim" with the other 1/2 generated through more traditional PR methods like news releases and creating your own wiki entry, etc.

I'm assuming that neuros would get regular updates on cllinical trials, but there are currently more than 100+ clinical trials for MS in recruitment . And I'm unclear why Tovaxin would stand out as "one fo the more hopeful trials" if you discount "Tim" and other PR.

As always I look forward to being corrected, its just that the closer you look at the whole "Tim" thing, the worse it smells for Opexa (plus the rather nasty suprise of finding out that Tim's father was a director of the Opexa board).

When I called the Berkeley clinic asking about the trial I asked the administrator if participants would be given further details of the initial trials to better judge potential risks/benefits. She actually referred me to TIM'S WEBSITE. That wasn't too reasurring.

LIZZ

Lyon · Post by **Lyon** » Sun Nov 26, 2006 12:45 am

CureOrBust · Post by **CureOrBust** » Sun Nov 26, 2006 4:27 am

ljm wrote:It started me thinking. Where exactly WOULD a neuro hear about Tovaxin?

This one uses the words Tovaxin. Its also been around long enough. Dont forget that I think most would hope that Neuros also browse the web on the odd occasion anyway.

http://registration.akm.ch/einsicht.php ... KEN_ID=900

When I found my neuro had never herd of it, I was a little dissapointed.

Lyon · Post by **Lyon** » Sun Nov 26, 2006 6:50 am

ljm · Post by **ljm** » Mon Nov 27, 2006 8:02 pm

Thanks Cureo/Lyon.

Lyon, I actually don't think that either "Tim" or his father are getting rich. My guess is that Opexa's IR/PR guy encouraged or placed the "Tim" posts as a carny way of priming the investment market...and priming the ms community. Its not sanctionable, but its questionable, and the question is, if they've got a therapy that works, why this crap?

In fact the internet situation has improved a lot with time. Not long ago about 90% of what you found on the internet was either by Tim or was a link leading to one of Tim's post or was someone using one of Tim's post as a reference

Lyon, when I googled I found about 50% of results were "Tim" or reference to those posts, the other 50% consisted of company news releases or restatements of the news releases. Plus clinicaltrials.org stuff. If you found anything else, can you post the links?

Opexa is wasting a heck of a lot of money for nothing if they really don't have what they're saying they have and I don't see what would be in it for them to do that.

Well first, "Opexa" is a public company, its executive/directors aren't wasting their own money. Second, I don't know about pharma, but in my tech area, companies can keep going, keep raising funds, keep making announcements, keep moving their stock way, WAY longer than you'd think possible without producing anything. Its the risk and tumble of open markets, its just, in this case, I'm sick and I want to be well, and so I find it less exhilerating.

Anyhow, if you have a link to an article that you found particularly helpful/persuasive, please send. I guess maybe I could apply for the trial and just see if I qualify.