Friday, September 23, 2011

How About Some Good News for A Change?

I don't know about you, but it's been another rough week around here.  Craig was home sick two days, and Jamie has been severely crashed all week and missed all five days of school.  I'm doing OK, but we're all feeling bad for Jamie.

So, when I heard some wonderful news yesterday, I wanted to share it with you.  One of our own has recovered!!

Many of you may remember Lori, the mom who blogged over at Living Chronically about her daughter's journey with ME/CFS and celiac disease.  Well, that journey is over now!  Jessica is well - completely and truly well - and is busy attending college and living the life of a happy, healthy young woman.  She has no symptoms, she can do anything she wants without crashing, and she no longer takes any medications at all. 

I talked to Lori about what helped and how she got to this point.  As is usually the case, it's impossible to tell and was probably a combination of things, including a measure of good luck.  Some of the treatments Jessica used that seemed to help with symptoms included:
  • Treating sleep dysfunction and headaches with nortriptyline,
  • Treating pain with Lyrica,
  • Treating Orthostatic Intolerance with Florinef (Jessie was one of those kids who used to think it was normal to feel dizzy and black out all the time!),
  • Lots of vitamins and supplements, based on bloodwork, including D3, B vitamins, multi-vitamin, fish oil, and CoQ10.
In addition - and perhaps most importantly - Jessica has celiac disease and is now on a gluten-free diet.  They suspected it for years and had tried gluten-free before, but she was officially tested and diagnosed in 2008 and stayed on a strict gluten-free diet after that.  Her symptoms didn't magically disappear as soon as she returned to gluten-free, but she has gradually improved over the years to where she is now.

They visited the Hunter-Hopkins Center in Charlotte, NC, and many of the treatments listed above came out of that.  Jessica was officially diagnosed with ME/CFS in 2005, so it's been a long and difficult process.  At one point, she had to quit attending school and finish high school online.

So, recovery IS possible and it DOES happen.  Dr. Bell's studies on kids and teens show that people who get ME/CFS as kids are more likely than those of us who got sick as adults to eventually recover, though I've posted stories here before of adults who have recovered as well.  I hope that hearing about Jessica's recovery inspires you and brings a smile to your face - not only in happiness for her but also in hope for all of us.

13 comments:

  1. That is good news! Love hearing the great stories.
    Love Leanne

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  2. Wonderful news and so hopeful!! Yahoo!

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  3. What a wonderful good news story! Much needed this week around my house too!!! It's been a very long week here too............

    So sorry you all are having a hard time.

    Thanks for sharing!
    Elaine

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  4. Oh yes, bring on the good news!
    Hope you get some more around your place soon.

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  5. Hope things get better for everyone around your house, Sue.

    Thanks you for such a sweet post. Yes, recovery CAN happen!

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  6. Great news....and I hope Jamie feels better soon.

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  7. That is fantastic news! How wonderful.

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  8. It is great to hear a good story about someone that has suffered with CFS....we don't hear them too often.
    Would you share what dose of Nortript. you most usually take at night. I was on 125mg nightly for several years and then this spring was taken off of it and now the doc is wanting to add it back with the generic Remeron that I am using for sleep... I thinki Remeron is a sister drug of Trazadone. I was surprised to learn I could use the Nort with it so was glad to read your old post where you have also combined it.
    He was suggesting 25 to 50mg along with the other med.
    I sure notice it helped with the fibro pain.....

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  9. Hi, Peggy -

    Wow, 125 mg is a really high dose of nortriptyline to use for sleep dysfunction - that must be up into the ranges where it also works as an anti-depressant. Then again, neither my son or I have pain problems, so we're just using it to correct sleep problems.

    I take 100 mg trazodone and 50 mg nortriptyline (taken all at once at bedtime). My son takes 100 mg trazodone and 40 mg nortriptyline the same way. My sleep feels pretty normal at these doses. I do still get up to use the bathroom 1-3 times each night but otherwise sleep soundly. I wake up feeling good.

    I hope you and your doctor find the right combination and dosing for you - it's very individual and relies on trial and error, so don't give up if the first dose/combo doesn't work - try, try again!

    Sue

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  10. Wow!
    First of all I want to wish healing to your sons and to you, Sue.
    Then, about Lori's daughter--stupendous!!
    I have loved reading her blog, and I'm so glad for her daughter and for her! This is just SO GREAT!!!
    It doesn't surprise me one bit that diet is so connected to illness and healing.
    Personally, being off of certain foods for many months now...although now I consume them again occasionally and seem ok...has improved my health and symptoms. When my oldest went off of dairy, her complexion cleared-up...but she missed the dairy more than she didn't want any zits and is back on it!

    Judy

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  11. I hear ya, Judy -

    I told Jamie that giving up dairy might help his GI problems, and he said he'd rather live with the stomach problems than give up ice cream and milk! Sometimes you gotta let them make their own choices...

    He and I are both trying to reduce sugar because of our Lyme problems. I don't eat much sugar to begin with, but I'm finding it's in a lot of Jamie's lunchbox and snack favorites.

    Sue

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