Dr. Brian Fallon of Columbia University provided an update on the Lyme and Tick Borne Diseases Research Center - biomarker studies, the establishment of a specimen bank, and most recently, the completion of a large community study in Lyme endemic areas to compare established and novel diagnostic assays. The focus of this talk was on two studies of diagnostic tests. One study examined whether three well-known Lyme specialty labs had greater sensitivity or specificity than one well-known national commercial laboratory in the correct detection of patients vs. healthy controls. The second study reported on a community-based study of 450 patients from Lyme endemic areas in the Northeast to determine whether two new diagnostic approaches imported from Europe and adapted for the ., resulted in greater sensitivity or specificity than currently available tests.
I have been on the trial for this drug and it will last for another year, so I haven’t had to pay for a thing out of pocket. I do agree that we are all just guinea pigs, especially since with this trial, they are only covering MRIs of the brain, not also of the spine. So what if there’s no activity in my brain, but there is in my spine, but without any physical effect? I’m only 23, I was diagnosed at 14, and this is the fourth drug that I’ve been on. Avonex didn’t do a thing except make me feel like I had the flu for half of the week after the injection, then it was almost time for the next shot. On BetaSeron, I also had to add on monthly prednisone infusions because I was ending up in the hospital with a relapse every three months. Finally, at 17, I was given the approval to try Gilenya. It had just been FDA approved for people 18+. This was a life saver. In the almost four years that I was on it, I was only in the hospital once. Towards the end, my neurologist said that there was disease activity in my brain that wasn’t showing itself physically, which can end up being extremely debilitating. That’s where the trial came in.
Since I’ve been on this new drug, I haven’t had many issues. I don’t know if my increased fatigue is due to the medicine or because I work 50+ hours a week, go to college full time, and have a hard time falling asleep. I was offered medication for energy, but it said that it was used for the flu and Parkinson’s disease when I looked it up, so I decided not to take it. The only thing that truly bothers me is that my body aches a lot. Far more than it ever used to. That’s actually what brought me to this page tonight. I looked up pain associated with this medicine because I’ve never had my bones hurt in my hands and my shoulders like they do now.
A "whistleblower suit" was filed against Wyeth in 2005 alleging that the company illegally marketed their drug Rapamune . Wyeth is targeted in the suit for off-label marketing , targeting specific doctors and medical facilities to increased sales of Rapamune, trying to get current transplant patients to change from their current transplant drugs to Rapamune and for specifically targeting African-Americans. According to the whistleblowers, Wyeth also provided doctors and hospitals with kickbacks to prescribe the drug in the form of grants, donations and other money.   A US House of Representatives committee, led by Rep. Edolphus Towns is investigating Wyeth for these abuses.