Why so many JCV tests Grammie?
I do have my tonsils...

and my appetite is just getting out of control!!!!!!!!!!!!

Congrats Linda on the 3rd negative JCV test! YEAH! It's so strange that you got a false positive, don't you think? Did the neuro have any explanation?

I've had 3 negative tests too. I think I'm due for the next one in Oct. My neuro was confident that doing it every 6 months would still be safe even if you happened to test positive on the most recent one you got and subsequently had to stop. I can't remember why but it had something to do with how long Tysabri stays in your body and how PML develops.

So I miscalculated my Tysabri infusion span and I think the 8 week mark was yesterday not last week!!!! So that means I still have a window of 2 weeks left (10 weeks was the limit my neuro said). I saw my doctors yesterday and they were amazed at how fast the wound is healing. The infectious disease doctor recommended 2 more weeks of IV antibiotics to add to the 2 weeks I have already had. So I am feeling more optimistic overall!

So glad to hear that Nat..

Update on the foot infection and Tysabri! This Friday I will have been on IV antibiotics for 3 weeks. This Friday will be 9 weeks since my last Tysabri infusion. Most likely I have to be on IV antibiotics for another 3 weeks. I was so certain I was a done deal with Tysabri because you just can't take the drug when you have an infection. After waiting anxiously for 36 hours from my neurologist, he and my infectious disease doctor came up with a plan.

If I stay on antibiotics for 3 more weeks that would put me at the 12 week mark for no Tysabri (very bad because of possible rebound effect). The solution is to get 1 large dose of IV steroids (500 mg) ASAP. The neurologist said that not only would this buy me 4 more weeks but the wound is far enough healed that the steroids wouldn't affect the larger healing process (can't remember the details why since he called when I was in a dead sleep). What this means is after the antibiotics are done in 3 weeks I would immediately get a Tysabri infusion the next day. Then I would be back on the regular Tysabri track.

Hallelujah!!!!!!!! I don't have to give up Tysabri!!! If for some reason the infection comes back (small chance) I would just transition to BG-12 which is about to get FDA approval and is not an immunosuppressant. [big sigh of relief....finally some good luck!]

PS: I haven't had the 'roids in 5 years. I'm not sure I can even remember what the side effects are except for manic energy and lots of weeping.

offinthedistance, when you are in the strata trial for the jcv test they take your blood approx every 12 months and my Dr ordered one test outside of the trial.

Natalie, first let me say I am very happy for you that you have a plan of action and that you are healing well What a miserable ordeal When I have had pedicures I ask about their procedures - now I will be even more vigilante

Dr Vollmer and Dr Corboy of the RMmsC have told me there is a 1-3%margin of error in the jcv test. So, when I had one positive and one negative Dr Corboy considered me positive, when it became 1 to 2 he was more into considering me negative-now ...

Linda