Me again
My Dr orders a JVC test every 2 months for me. For a couple years I have been in the indeterminate range of .22 to .26. I rec'd my latest #'s Fri, .19 which is negative?? I emailed my Dr's office asking what this meant. A short time ago I received the reply saying that overtime the body can rid itself of the virus since, my #s were so low that's just what my body did This also explains why I've heard of someone's #s going down !

Since I go to the RMmsC I'm inclined to be a believer !

I am excited for this news and wanted to share!

Linda

Jumps through the door and peers around...
Howdeeee!
Stopping in to report that I'm alive!
It will be 10 years on May 25, 2017 since I started Tysabri.
I am still JC negative. I've had no relapses, no signs/symptoms and no problems since I started way back when.
I've missed two infusions since I started, one for appendicitis and one because of insurance.
I'm off all meds except the Tysabri and MMJ
I am now a full time college student, my full time job ended because my employer went bankrupt. I am back on the river in season and in college all the time, trying to complete my degree in a year (yes, I'm crazy)
I'm hoping to come out of all of this with skills that will allow me to take to the road and travel, while still doing some sort of work to add to the money pot.
The very best thing about being in college (besides the learning, that is) is ...wait for it...
STUDENT HEALTH INSURANCE! LOL!
Gold plan, PPO, full coverage, low deductible and copay and much lower premium costs than the plan I had through the government.
I may have to be a student forever...
Hope everyone's doing well!

Glad to hear that you are negative!!
I never showed any antibodies, every test comes back 0.0. I still don't know how I didn't have any exposure to the virus, having lived all over the world as a kid.

JCV; went back to positive/indeterminate .25. I'm grateful it's low.

Pretty sure I had #114

Been with my significant other for over 3 months It helps that he was my first BF in 1963 till 1966. We have history/memories and the present! Life is good

Glad to hear Linda that you are back into the indeterminate range! Congrats on the lengthy Tysabri journey. Sounds like life is great.

Yeah for college Riverwild!

I just had an infusion a few weeks ago. I've lost count now. But I started in July 2008 - so I'm going on almost 9 years. Knock on wood - here is for many many more!

I haven't been checking in regularly - I can't believe I joined this forum 10 years ago! I wanted to update the forum in case people still visit. I always loved everyone in here.

I was at the nine year mark to the month for Tysabri when I was diagnosed with cancer. I had surgery and started chemotherapy. But my neurologist said that I needed to go off of the Tysabri. My sense is that I will not be able to go back on the drug because of all the chemotherapy medications which obviously suppress your immune system. I am still JC virus negative. I have no idea what I will go back on when the chemotherapy is over. It was emotionally crushing because Tysabri has been my lifeline for so long with zero relapses.

Anyhow I guess it's good news there are more new drugs out there these days. Anyhow it was a good 9 year run on Tysabri. I'm going to miss that drug.

Natalie,
I wish you my very best..
Linda

Natalie, I had no idea this was happening to you and I pray that you stay symptom free during your treatment and are able to get back on Tysabri if you can. I know how well you have been while being treated with it.

I had a lumpectomy, fortunately it was just atypical cellular growth but it was suggested that I go on Tamoxifen, due to family medical history of BC. I had unbearable side effects from it so it was discontinued. I am just supposed to watch and test and mammo until the girls are flat or gone.

Sadly, I too have been taken off Tysabri for now. I tested positive for the first time in ten years for the JC virus antibodies. The doc thinks it is a false positive but due to circumstances beyond my control, I have no insurance at this point and cannot afford to retest.

My fiance took his own life while I was away visiting relatives in June and I am just now coming out of the fog of his loss. I found him when I came home, and believe he took his life less than 8 hours before I got back, after following the clues he left. We had a memorial service for him this past Sunday, and one in his hometown out of state in September. I am learning to live on my own again after almost twenty years with him by my side, and it's not going that well.

I had the blood test for JCV a week after his death, my insurance was done shortly afterwards and I just didn't care at that point. I canceled all my infusions (scheduled six months ahead) and other appointments, barely finished the college classes that I was in, withdrew from two, passed two and just gave up on one and took the F.

So here I am, not a very positive, upbeat report this time, eh? I have no job, no insurance and just don't care right now. I imagine I will wake up at some point and get myself together, but it's not going to be today.

Love to you, and filled with hope that you will get through your troubles,and come out clean and free of illness.

River I am so very sorry to hear about your fiance. I am so sorry you had to go through all that you did. I can relate to it in a way. Having the rug ripped out from underneath you like that makes recovery slow and hard. Wish I could give you the fast forward version of getting through it all but there's not one. I hope you are doing well and have someone there to talk to. If not just come on the forums here and you'll always find someone. Please take care of yourself.

Love,

Kitty

When it rains it storms doesn't it? I'm so sorry to hear about this awful news. No wonder you barely made it out of classes. The positive JC virus must have been a shock, followed by another shock of tragic proportion. I had a parent commit suicide. All I can say is you will get through this eventually and come out on the other side. I'm not saying it's easy or quick but you will make it. In the meantime it hurts so much and you are left numb to the world. I'm sending you all the positive energy and thoughts in the world.

Tamoxifen can be awful I've heard. No boob cancer for me but it did involve surgery that was highly intense. And I think to myself, really universe? You had to give me MS and then exactly 10 years later give me freakin' cancer??

I worry about your MS. Is there nothing you can take with help from the drug companies with free meds? My doc thinks the chemotherapy will keep the MS quiet because it suppresses your immune system. The question is what to do next? Sigh.

Anyhow all I can say is We will get through this.