November 3, 2011

November Update – a vaccine in sight?

Posted in Uncategorized tagged , , , , at 2:03 am by serenamuse

Thank you Charlotte for posting this link http://www.menafn.com/qn_news_story.asp?storyid=%7Bc36e3cb1-bf16-488e-988b-faf747cdde75%7D

It sounds interesting but I’m not sure I understand what it means? Can someone out there decipher? Is this technology government owned and up for sale? How amazing it would be to think there might be a vaccine…

November is upon us and I am down with a bug. Funny, I usually avoid these things and just suffer from the parvo stuff, but I am teaching now and know at least one of my students has been out with something similar. I appreciate everyone’s posts. It is so helpful to see that there are things that are helping some of you. We still seem to be dealing with doctors who are behind the times on parvo though and that makes me sad. Please do let us know if you encounter a good doctor who understands the magnitude of what you are going through. They are far too rare.

Do any of you have suggestions on how to survive the coming holidays, along with the social expectations and subsequent feelings of inadequacy and letting others down? That is always a hard one for me. Whenever I think I’ve moved past it, it looms again.

With weather changes usually comes parvo changes too, more joint pain, more fatigue. Please continue to share anything that is helping you get through. I for one, do much better when I can afford a good massage. It usually takes two one hour sessions in a week to make a difference. Unfortunately my insurance does not cover it or I would go more often. Someone needs to lobby for that!

Hope you are enjoying beautiful fall days!

Serena

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6 Comments »

  1. Hi Serena,

    I had the transient aplastic crisis with parvo in 1999 and was followed by a heme onc for 3 1/2 months who thought it was a smoldering AML. Since then I suffer terribly in the fall and sometimes spring with severe bone pain exactly like that during the infection. Is there any way to diagnose a chronic infection beyond the titers that show past infection?

    • serenamuse said,

      Yes there are, but doctors often do not want to request those labs. They are costly and will argue that it doesn’t matter what the results are because they don’t have any treatment to offer. Just demand to be tested for current levels in your system. There are two different tests they will order. Good luck.

    • Leslie said,

      Hi, Jeanne… hope you’re following the recent discussion under “Reply to Oral Meds” I don’t know if parvo can linger as long as 12 years (1999 to 2011) but YES there is a way to test for parvo beyond the IgM and IgG. You can get a DNA test done… don’t give up digging! If need be, try to pay for it yourself just to confirm any suspicion. I think mine was around $300 or so.
      Leslie

  2. Katie said,

    Good morning to all!
    I am so excited to think there could be a vaccine waiting. Am planning on bringing this info to my dr. On nov 15. Last time he and I talked on phone I was pretty much begging him for something… Any info. My heart sank when he said he didn’t know what to tell me. I told him I’m getting worse each week and Friday’s are scary. Always geek like I’m going to pass out on Friday. I took half day this Friday. Knew when I woke up that I wasn’t going to make it through the day! Anyone ever heard of the metabolic institute? Cincinatti ohio?? Praying for all of you!!!!

  3. Hi Serena,

    Thanks! I had parvo in 1999 causing a pancytopenia and aplastic crisis which seems to flare up in the autumn with severe (cold) bone pain and sometimes blood dyscrasias. My titers now show past infection. My question: In chronic parvo are the titers showing “active” infection all of the time (high IGM) and never move to ?IGG showing past infection?

  4. Chaundra Catrone said,

    I have been following this blog since shortly after I was diagnosed 6 months ago. Still dealing with severe headaches, daily joint pain of numerous locations, significant fatigue/exhaustion and nausea. However, despite the stress of the holiday season, there is a blessing in this mess. It has forced me to step back and take more time to enjoy the preparations. I have tried to be more relaxed, and hand over the reins. My children have helped me more than ever with baking and wrapping presents, and my husband’s house cleaning (to keep me de-stressed) has been phenomenal. Sometimes even when you are dealing with a challenging situation, finding the good can help you endure! I look forward to continuing to hear more from others on this site.
    Chaundra


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