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This topic contains 14 replies, has 14 voices, and was last updated by  Parisa 8 years, 9 months ago.

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  • #303511
    Forum Admin
    Keymaster

    Please join the Road Back Foundation (RBF) in welcoming its newest discussion forum volunteer, Parisa.

    Parisa has been participating regularly as a valued poster on the discussion forum for the past several years, advocating on behalf of her husband who was diagnosed with dermatomyositis and also sharing much of what she has learned with others along the way. As a result of her advocacy, not only is Parisa's husband well on the road to remission from this very debilitating disease, she has very generously agreed to continue to extend the wealth of information she has accrued by supporting others here on the discussion forum in a voluntary role.

    RBF is grateful to have Parisa join its team of dedicated volunteers on the discussion forum. Thank you, Parisa!

    RBFV

    #341661
    Trudi
    Participant

    Thank you for becoming a volunteer, Parisa.  Somehow I had the feeling you would be the next one–you have a wealth of information.  We are so lucky to have such knowledgeable volunteers!!

    Trudi

     

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #341662
    mschmidt
    Participant

    I was very happy to hear you were joining us as a volunteer.  Your advocacy and knowledge already has been, and will continue to be such an asset to everyone here.  Thank you for your dedication and help!

    Maria:D

    #341663
    Eva Holloway
    Participant

    Parisa,

    Congratulation for you to become a volunteer. It is so good to have volunteers that are diversified in the different autoimmune problems. Each of you has experienced a different illness, in your case your husband, but you have been there for him. Again congratulation.:D

    Eva:D

    Eva Holloway

    #341664
    Lynne G.SD
    Participant

    FORMIDABLE!!!!!

    Parisa,your never ending beliefs will help many.UM… that sounds weird in English.Hope you know what I mean.I am so proud of you and ALL those that give so much time.
         lynne

    #341665
    nspiker
    Participant

    Parisa, so glad we will be hearing more from you….you will be such a great addition with all of your knowledge, and success. 

    Just had someone mention you on lymenet.  Is it my imagination, or does every volunteer on RB have lyme associated with their autoimmune disease? 

    nancy

    #341666
    Maz
    Keymaster

    Parisa, it really is fantastic that you have hopped on board as a volunteer here! Thanks so much for all you have contributed over the years to date – I've learned such a lot from your hard-earned pool of knowledge! You really have supported so many along the way that it's like you've been volunteering all along!!

    Peace, Maz  

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #341667
    Cheryl F
    Keymaster

    [user=1552]nspiker[/user] wrote:

     Is it my imagination, or does every volunteer on RB have lyme associated with their autoimmune disease? 

    nancy

    Nancy,

    I love your question, you would almost think that RBF has a Lyme diagnosis as a requirement for service, huh?  But no, not all the RBF volunteers have Lyme, just the ones that have been tested by the accurate tests! LOL:roll-laugh:

    Cheryl

    #341668
    Patti D
    Participant

    Pinch me please!
    Another great volunteer!!! Thank you Parisa. We are grateful for your service to all of us here on Roadback.
    By the way, I have always loved your avatar and your words of wisdom as well!!!
    Patti

    #341670
    Parisa
    Participant

    Thank you everyone for your support.  I've been running around all weekend doing everything but look at this site.  A testament to how well my husband is doing.  We're digging out and reorganzing all the things in the house that slid during the past four years.  Once I get the house organized, maybe I can get organized enough to put all of my AP/Lyme research in one place (that might be harder than overcoming an autoimmune disease!)

    #341671
    Kim
    Participant

    A huge thanks from me too, Parisa, and not just for agreeing to help with the board, but for your many helpful, thoughtful posts over the years.  You've saved my bacon on more than one occasion. 😉

    Our board has grown in numbers and it's because we have so many active posters coming to this party with all sorts of complex problems, but there still seems to be some common threads running through all of us.  We always encourage the lurkers to join in because whether you know it or not even your question could be helping someone else.

    Parisa, you've always treated everyone with courtesy and respect which is part of what makes our board a comfortable place to visit, so thank you.

    Good luck organizing 4 years of medical stuff.  I've tried……..unsuccessfully. 😕

    Take care…..kim

    #341669
    mkbeeliever
    Participant

    This is spectacular news!  Great choice RBF!  Congrats US and Congrats Parisa!
    Hope everyone had a nice weekend and a wonderful St. Valentine's Day!

    Blessings,
    Michelle

    #341672
    Rosey UK
    Participant

    Hi Parisa,

    That's GREAT NEWS!

    Thankyou!

    Rosemary :roll-laugh:

    #341673
    TischSEB
    Participant

    Parisa,

    I am so happy to hear this! it was your story that kept me coming back to this website when I first learned about AP. With all of your knowledge, I know you will be helping many more people get on the road back.

    Tisch&SEB

    #341674
    Parisa
    Participant

    It's nice to know that some of my posts helped people to try AP or look at Lyme disease.  I know when I first came here there was very little on dermatomyositis but there was one poster and I read and reread  her story a hundred times.  I knew that if she had found a way to make this disease go away then we could too.

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