Tuesday, October 27, 2009

XMRV Study Starting

NOTE: PLEASE DO NOT REPOST WITHOUT PERMISSION

I don't mind the info being reposted on blogs. Everyone has been wonderful about asking and I feel like we all help each other out with things but please ask if you are wanting to post on a message board.

I received a phone call from my doctor's office today. They are starting a study to see what XMRV is doing in the body. It will begin next week so I'll be going up on Monday to get my blood drawn.

I've been worried about how I was going to get the money together to get tested. Now I don't have to worry because they are going to send the blood to WPI (or VIP dx labs which uses the same technology that WPI did in the original study). I will get tested for both active and latent XMRV and it will not cost me a thing! As I mentioned in a previous post both tests cost $650. The study will also involve filling out a questionnaire. It will take a couple months before the results are in but that's fine with me.

Apparently Dr. Mikovitz is very interested in the population that is served by my doctor's office. I'm feeling very grateful for my doctor and even more grateful for Dr. Mikovitz and even more grateful for Andrea Whittemore Goad and her family. If it weren't for them we would still be in the dark ages when it comes to this disease.

Changing subjects: I won't be continuing the Cipro. I took my third pill this morning and had terrible dizziness along with terrible anxiety and a few heart palpitations which doesn't help the anxiety any. I've been feeling horrible all day and just counting down the hours until this stuff leaves my system. I called my podiatrist who changed the prescription to Keflex. I hope the only reaction I have to Keflex is my toe getting better. It has already improved in that I'm having very little pain.

On a completely unrelated note I wanted to share a couple things that fellow ME/CFS'rs have created. One is a website designed by Toni . I always look up blogs that people who comment. I clicked on Toni's name, then clicked on her website fully expecting a blog. What I found instead was beautiful. There is what looks like a painting on the first page. It is stunning. I thought to myself "Wow! Where did she get that painting? I want one!" She painted it! If you want a treat I recommend visiting her website and reading everything on their. There are jewels everywhere. I found it quite moving.

Then there is Pris Campbell's book Sea Trails which can be found at this website It is a story of a life changing journey she took via a 22 foot boat down the east coast. See Pris's blog Song's To A Midnight Sky to read more and to read her moving poems (she is also an accomplished poet). I read a couple excerpts from her book and was so thrilled I purchased a copy for myself and a couple for gifts.

These are just two people who I find inspirational. They also give me hope because both are about as ill as I am and they both created beautiful things. I think I might start mentioning other people's creative blogs here as well.

There is so much pain and suffering in our ME/CFS community but also so much beauty, compassion, wisdom, and kindness.

6 comments:

  1. Thanks so much for telling people about my website, Terri. Your comments made me feel so good! One reason that I haven't taken the time to learn the new program for updating it is that I was finishing work on a book about living well with chronic illness. I wrote it much the same way that Laura Hillenbrand described writing Seabiscuit -- lying on my bed with my laptop. A friend helped me find a publisher and any day now I should be starting the editing process. The title came first: How To Be Sick. It took me several years to complete because I could only write or edit on days when I wasn't too sick to concentrate. I was often so discouraged that I just wanted to give up on it, but I stuck it out and now I'm glad. I'm told it will be published in 12-15 months. It's written to help the chronically and their caregivers. I just want something good to come out of this unexpected turn in my life.

    I'm so excited that you are able to get the testing for free and will be part of a study. I'm just going to pay out-of-pocket for the test and then ask my insurance to reimburse me (which I'm almost certain will not happen!).

    Thanks again for telling people about my website and I sure hope that toe gets better soon.

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  2. Congratulations on getting into to the XMRV study, hopefully they find something beneficial to your treatment

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  3. Congratulations on the study! What great news - AND you don't have to pay for the testing.

    I've been to Toni's site and it is wonderful, very inspirational and beautiful. I wondered myself if she painted the picture on the front.

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  4. I am thrilled to hear your news of being involved with this study. I am delighted they are starting further studies so soon and look forward to hearing more through your informative blog.

    Although I have Lyme Disease and am nearly 100% now whilst on antibiotics I was originally like many other people I am in touch with diagnosed with ME/CFS.

    There seem to be many parrallels with these illnesses and both coming from the same/similar infection pool and the immune problems plus other infections. Also NKT cells involvement.

    So I am very interested to follow outcomes. I suspect and I know others have voiced comments that this might be the reason some Lyme sufferers are unable to throw off their infections.

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  5. First of all, thank you so much for mentioning my book and website. Toni, I hope you read this since I read this after my comment back to you and can't find a way to contact you to say how lovely your art is...and you're a fan of Issa, too!

    Terri, how absolutely neat that you can get this testing for free and with a doctor who'll be in a position to know what to do with the information when it comes back, ie wait and see or go with any recommendations. I wonder what other doctors the center will be contacting.

    Cipro, btw, is one of the few antibiotics I can take but it causes mood changes and a 'wired' feeling in me. The others inflame me, make me throw up, make me so dizzy I can't see straight, etc. Frustrating, isn't it!

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  6. Thanks so much for your excellent blog. I'm a CFS sufferer from the US and I'm in France for the year. Do you know whether I can be tested for XMRV here? Any idea how I go about it?

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