Hi all. My name is Ed. I have a sister with MS and I was e-mailing Chris about HiCy when I mentioned to him that I was following Tovaxin also.
If we all take a step back from the emotion surrounding Tovaxin -- believe me, I carry my sister in my heart every single day -- the only rational conclusion you can come to is that Tovaxin, at best, does not work ("no statistical difference from a placebo"), and, in all probability, was a scam to begin with. Yes, I bought $1,000 worth of Opexa stock about 2 years ago, but the real hope here was for Tovaxin to be a CURE. Here is my thread with Chris about Tovaxin:
In fact, in a past life I was a stockbroker. I lost all my money with Tovaxin, but I only put a $1,000 in to begin with. I've taken enough stocks to zero to understand that when a start up is in phase I, you do NOT bet the ranch on it. Tovaxin had all the great pictures and "testimonials" with it, but that means nothing. I've had people look me in the eye, say "I swear to God," and lie to me through their teeth.
Could Tovaxin still work? Maybe. But I'm not putting another penny in it.
I'll post on ThisisMS.
Sent: Tuesday, September 30, 2008 9:43 AM
Subject: Re: HyCy and SPMS
I wish you would go to www.thisisms.com
with what you just told me and put it into the Tovaxin forum there. They will not listen to me.
I think with your credentials, and the fact you and I are able to carry on an intelligent conversation would prove I am no dummy lol.
I tried for Tovaxin and by the grace of God I didn't make the MRTC's needed. I got really lucky with this.
I also got lucky to get my money out of Opexa. I also am lucky enough to be just beginning my TD ameritrade acct and it's a great time!
"A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort."
- Herm Albright
Our friendship is like sitting down to a breakfast of eggs and bacon. The chicken is dedicated to the cause but the pig is committed. I hope you are a pig.
On Tue, Sep 30, 2008 at 6:50 AM, wrote:
Thanks Chris. I know you're not making money off of this, but my God, you would not believe the people out there promising cures and miracles to people with MS, charging THOUSANDS, and then they disappear when the police start closing in. I had high hopes for Tovaxin, but if something gets cancelled in phase II, and the stock goes from $2.40 to 0.20, and the kid's father gets out after the phase II financing, I have to assume it was a scam until somebody proves otherwise.
All the best,
Sent: Monday, September 29, 2008 6:45 PM
Subject: Re: HyCy and SPMS
The biggest way to explain the RRMS SPMS and PPMS is this...in RRMS,SPMS there is still an immune system component to the disease and it shows up on the MRI as a lesion. In the later or worst case of MS aka PPMS there isn't much of an immune system factor. It's jumped it and went to the next stage which is much worse.
If there is no immune system factor in the MS restarting the immune system will not help.
I assure you I make 0 off of this. I hope God lets me have nice place someday as a reward for what I do. If I get worse I will not disappear.
On Mon, Sep 29, 2008 at 4:06 PM, wrote:
Thanks Chris. What do you make of this whole inflammation v. non-inflammation protocol? My sister is diagnosed as SPMS, which I suppose is non-inflammatory, but she gets weaker every year. I now think SPMS and PPMS is an excuse for neurologists and
pharmaceutical companies to throw away MS patients who've had it for more than a few years.
Thanks for fighting for the MS patient community out there. I think about the sham treatments I've seen, and the neurologists who believe that the meds they prescribe must be the only possible treatment option.
I see that Tovaxin has apparently failed a phase II trial, which tells me all of the buzz and the website and the "miraculous" recovery was a scam designed to defraud real patients and investors of their hopes and their money (why else would that kid's dad get out after the phase II financing?!?).
Subject: Re: HyCy and SPMS
Baloney. Until you hear that from everyone you go to don't believe that crap. I know Rush in Chicago is treating SPMS patients one of which has been with this crud for 23 years.
I also know of someone who took a stack load of us to a bunch of oncologists and neuro's until they agreed to do it. I can't
open my mouth about that yet and who it is.
Unfortunately with HiCy it does seem that some lesions being present helps. If the MS is not the inflammatory type aka the
progressive type, this may not work. Let the folks doing the treatments make that decision.
Good luck to you. I hope you can qualify.
My name is Ed and I'm writing on account of the
article about cyclophosphamide this summer in the Johns Hopkins journal.
I just saw the article recently. I came upon your website through the THIS is MS website. I'm writing about my sister Janet. Janet is 40 and has been wheelchair-bound due to MS for 10 years now. I just spoke to [a MS doctor's] office in Bay Shore, L.I. (NY). Terry from his
office just told me that his office is only treating patients who can walk,
even with a walker, and HiCy is only available to patients who
participate in research trials. Is this the case at Johns Hopkins also?
Not to sound cynical as a family member who has watched
his baby sister take Avonex for 16 years now, and seen her neurologist
decline to prescribe her Tysabri and even LDN, but this seems like more of
the same old medical monopoly.
Congratulations on your recovery. I'm glad that people with MS who can still walk have reason to hope for a cure, but I guess people
who've had MS for more than 10 years who can't walk anymore in
America should start making funeral arrangements. And doctors wonder
why people are going to Mexico, South America and China for medical
I'd be interested in any information you can provide.
Thank you, and continued Godspeed in your recovery.