Results 1 to 4 of 4

Thread: Friend tested postive for jc virus

  1. #1
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    The South
    Posts
    549

    Default Friend tested postive for jc virus

    My friend who has been on Tysabri for 60 infusions has just tested positive for the JC virus. She will be getting another MRI (6month one) next week to see is she has any changes on the brain to indicate the PML disease. Then she will be getting one every 3 months if she continues on the T.

    It is very sad to see that she is still in a wheelchair after 5 years of T. The MS nurse called today to tell her the news. I really feel sorry that her doctor is leaving the decision up to her. She has heard that some people get worse when they stop the T.

    When did doctors start letting the patients make the major decisions concerning medical treatment? Was it when the lawyers, Big Pharma and insurance companies started running the medical profession? This just pisses me off!

    Gabriella

  2. #2
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    Tehran
    Posts
    664

    Default

    A recommendation from the doctor and offered guidance and information would be helpful (and should be mandatory), but it's the patient who is affected most, so the patient should be making the major decisions when possible.

  3. #3
    Distinguished Community Member SalpalSally's Avatar
    Join Date
    Oct 2006
    Location
    SWOhio
    Posts
    3,569

    Default

    Had she been tested before and came up clean? If the JCV has shown up anew, then, I would drop the TY like a hot potato!! It's apparently not helping her anyway.

    She should still have the PML tests to make sure, though!
    Last edited by SalpalSally; 10-06-2011 at 11:13 AM.
    Love, Sally


    "The best way out is always through". Robert Frost







  4. #4
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    The South
    Posts
    549

    Default Tests

    This is a brand new test just developed for the JC Virus. Sorry, but I don't think the patient has the knowledge nor the background to be deciding her treatment. The doctor has the medical training and should be acting in the best interest of his patient and not just promoting Big Pharma's biggest money maker to everyone that comes into his office.

    I know from personal experience with the past 10 years with this doctor. Biogen-Elan has him on the payroll and he doesn't promote any other treatments as he has the infusion center in his MS Center. This is what I was offered after I failed 9 months on Avonex way back when Tysabri first came out. I was to start getting it the month after it was pulled off the market the first time due to the PML risk. The doctor didn't explain anything only giving me the Biogen package of information which we all know is biased toward the drug. I believe the number of people with the virus is 80-85% and it is dormant until some other process causes it turn into PML. I asked about the test when I was making a decision and it was not available. With my past record of catching every bug that comes along the chances are more likely than not that I am positive also.

    None of these risks were explained to me and when T came back out I did not choose to take these risks that I now knew about as I had researched the drug. Later, I asked him about using Copaxone and he told me it didn't work! Period end of conversation. He is a a*s*s hole and I now have changed doctors within the same practice who found I also have myasthenia gravis with a simple blood test would have shown it 10 years ago. I was diagnosed on the first day I went to Dr. Mengele's (not his real name but it fits) office on the basis of the MRI with "classic definite MS" of 25+ year. I was not given any other blood tests to rule out other problems such as MG or low Vitamin D levels, or B12 levels, etc. The MS is just a part of the puzzle and not the whole puzzle.

    I don't know if she will be tested for PML judging from this doctor's track record until she shows other more serious symptoms. I don't believe she even knows that PML can be fatal and much worse than MS alone. She totally trusts him. I hope I don't scare anyone here who is on Tysabri but everyone should be searching for the right information for theirselves (or is it themselves?) and I know what works for one might not be the drug for another. The information is out there on You Tube for one source and a lot of people have made videos. One young lady who is Italian and married to an American has made videos of her journey beginning at John Hopkins when she enrolled in a study of Tysabri until now after she developed PML after only 22 treatments. You can find her on YouTubeAngelusa73channel or just google Angela MS YouTube to find some of her earlier videos. She has also been posted about on ThisisMS because she has CCSVI and helped transcribe some of Dr. Zamboni's medical information. She was to have the CCSVI surgery when she developed PML so it is out of the picture now. I've been following her story for a while also.

    Sorry, I am being very long winded tonight but just needed to vent a little!

    It's the steroid rage I'm in..... Only 125mg....just think what I would be like on 1,000mg!

    Gabriella
    Last edited by Gabriella7; 10-06-2011 at 08:38 PM. Reason: spelling

Similar Threads

  1. Replies: 8
    Last Post: 01-22-2012, 11:40 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.