December 28, 2011

The next step for Parvo online data gathering and dispensing…

Posted in Uncategorized at 10:51 pm by serenamuse

Hello all. I’d like to wish you all a very Happy New Year – and a healthy one. One of our readers has been doing a lot of research and has pointed out a website to me, that might be of interest to all of you. Here is the link http://forums.phoenixrising.me/content.php?525-Ottawa-Conference-Reports-III-The-Most-Expensive-Disorder-Clauw-on-the-Fibromyalgia-and-CFS-ness-of-Chronic-Illness This is a well organized website that strives to give the latest information on CFS/ME and Fibromyalgia. First off, I am not convinced that we as people diagnosed with Parvo B 19 are to be considered separate from CFS. (here is an article of interest http://www.prohealth.com/library/showarticle.cfm?libid=9473) So many of our symptoms are the same. I tend to think that we are fortunate that we can pin point a direct cause or at least a correlation to our symptoms, however, that is not to say that CFS is not the result of other viruses. I tend to think the Parvo virus was a trigger, but that other factors were in line for us to get the “chronic” condition. Anyhow, there is some very interesting information on this site that might be of interest to you. This however is not my sole reason for having you look at the site. My question is, what can we as a Parvo Community do to facilitate more effective information gathering? Yes, we can figure out how to put together a fancier website, but I feel we need to have the involvement of some medical professionals. Do any of you have ideas and the means to help pull something together? I am not a web designer, nor have I found any doctors that are committed to our cause. If any of you have ideas or means to help put something together I am open to hearing them. I’d like this to be the most productive forum possible. I also wonder if perhaps we should try to connect with a forum like the one I have posted, as I do feel we are not so far removed from CFS as we might think…What are your thoughts?

Best,

Serena

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18 Comments »

  1. Angel said,

    Greetings All….
    For those of you that have made a career change since encountering our misfortune, have you shared any limitations or “diagnosis” or “disability” during your interview process with various prospects? I would love to hear your thoughts, as well as experience. I know that I must be honest in regards to my situation. My current employer is fabulous and supportive, yet, because of my challenges I must seek a different type of position. I suppose we would have to have the diagnosis of what it leads to since we can’t have a “Parvo” disability- and those that keep testing negative for most, yet have all of the symptoms??? hmmm…thoughts?

    Prayers and healing to each of you…

    • Kelly Ann said,

      I have tears rolling down my face reading all these posts….I have had Parvovirus (I teach young kids and one had fifths desease) for 8 months now. My fingers,wrists, ankles and toes ache 24/7 and my lower back. I NEED to lay down everyday for at least 30 min to rest my body. I don’t share this much or complain. Should I be getting blood work regularly to see if Parvo still present? I’m currently on Day pro 600 once or twice a day. it’s the 3rd one I’ve tried. Doesn’t seem to work any more. Should I be in a study or something? Ugh……

      • serenamuse said,

        There are no shoulds with this disease. You just have to experiment and try to find what is going to help you most and that will change. Nothing works indefinitely. My body seems to constantly be reinventing itself. It is more than frustrating.

      • jellybellykelly9 said,

        Thanks for your reply, I’ve decided I need to except that this is the new way I am, keep experimenting and be happy anyway…

        Sent from Samsung tablet.

      • serenamuse said,

        It isn’t easy, but you will find things that work for you and then you will make adjustments. Over the years I’ve found the chiropractor (a very sensitive manipulation, no wrenching!) helped, as well as yoga, meditation, walks, and of course, diet, clean vegan has worked for me, though at times I cheat and have an egg when I really crave protein. Laughter helps too, try to keep spirits up. Watch comedies! Or for me Jane Austen, pretty shows, where I can get lost in the landscape, and color and soft talking.

  2. Barbara A said,

    Hello again, I just found Dr. Young at NIP, Washington DC that is currently doing research on Parovirus in adults, it would be nice if he had the time to answer some of our questions. Though many relate Parvo to CSF/fibro there are others linking it to aplastic anemia, and symptoms related to lupus. Yet one of the major hurdles is for the medical providers to understand and acknowledge our symptoms and treat us accordingly. I have been to more than five rheumatologist, neurologist, phyiscal therapy the first thing they feel is I am searching for drugs, and as a nurse I find this disheartening when all I am looking for is answers and a decent quality of life, especially for my young children.

  3. parvoless said,

    Ive had off & on pain with parvo for 3 plus yrs. Last week my primary care doc put me on predesone (steroid tabs) plus maxalt 10 mg for headaches. I feel like a new person. This is the 3rd time ive been on steroids in 3 yrs and it has helped me get on a path to remission when long periods of joint/muscle pain and sleepiness persist. You can’t rely on steroids because they are addictive and not good for your body when taken too much. Just wanted to find out other reactions…Blessings.

  4. besteverste said,

    Parvo is one of the “suspects” when it comesto trigger ME/CFS. However, it seems that the current thinking is that ME is a combination of a genetic disposition and an infection. There are also indications that ME might be an autoimmune disease, folowing the Rituximab study in Bergen, Norway by cancer specialists Fluge and Mella. This was a randomised double blind study, where a statistically significant number of ME patients showed marked improvement on Rituximab – an immunosuppressive drug that is aslo used in arthtitis.
    Me has also bee shown to be caused by eg. parasites, like Giardia.
    If you are interested, the newest diagnostic criteria for ME were published last summer, you should be able to find them online.
    http://www.youtube.com/solvecfs#p/a/u/0/hyWSNitU-PQ is a “webinar” hosted by CFIDS on the “virus connection” in ME, among others, Parvo.
    Personally, I have had ME since a flu-like illness in 1999, but Parvo only now – but I seem to have a hard time shaking it off, and I still have lots of joint pain, 6 weeks after onset.

  5. Hello…I have created a FB page of all of the information I have gathered over the months regarding Adult ParvoVirus B19. In addition, my account is documented as well as several others who have written comments and shared their experiences. I hope you find this helpful…L. South

    • serenamuse said,

      Excellent.

    • Roxie Bryant said,

      Thank you for all your advice reguarding Adult Parvo. I have. Not been diagnosed with this but a friend of a friend in my same town has. I’ve been dealing with this for about 6 yrs. Finally 2 yrs ago I went to see everykind of Dr. Possible with no outcome. They make it sound like everything is in my head cuz they can find anything wrong. I’m so tired of living in pain. I plan to go see this Dr. My friend had seen because she now knows all about this virus. I know there isn’t a lot they can do for it but it’ll be a piece of mind not always wondering.

    • Melissa said,

      Where is your page?

  6. lostlangtons said,

    Hi, thanks for this resource, I have just found out I have Parvo IgG 24.6 but negative IgM. Does that suggest a chronic infection?
    I have ME/CFS and was tested along with a lot of other stuff. I get mild arthritis in my knees especially left. Nothing like as bad as most of you I think, you poor souls.
    I am a member of the site you link a nove, phoenix rising. There are a few studies linking Parvo to me/cfs.

  7. Melissa said,

    Serena, I’d be happy to help you pull together a new website 😉

    Melissa

  8. tutu said,

    A website would be great. The more info out there the better.

  9. tutu said,

    I am interested to hear has anyone benefited from fasting? I have had on-going Parvo for six years. My neurologist has offered me an array of drugs, but after reading the possible side effects I have declined, but I haven’t cancelled it out. I am beginning to think it’s helping just to accept I’m in pain and to work my way through it. I took up Karate because the down ward dog in Yoga was hurting my neck,and although I go to my classes in pain and foggy I usually feel much better afterwards. Does anyone have an optic nerve symptom? which causes lack of focus.

  10. stacey turner said,

    Anyone interested in joining a Parvo B 19 support and solutions facebook group to share what is working and info we are learning? I am starting a group and would love to have you join me… my facebook name is stacey turner (McDoanld). Friend me and then send a pm saying you want in the group or send me your email address and I’ll add you to this private group meaning you will be able to see the posts, but your friends will not see it on your wall. https://www.facebook.com/groups/938126616247691/

  11. stacey turner said,

    I caught Parvo a couple of years ago and struggled for about 9 months with terrible joint pain. I found daily flooding my body with at least 30 – 40 fruits and veggies and berries made a huge difference in my recovery and for over a year now I have very little to no pain. I know from all of the research I have done over the last 12 years on the power of whole food nutrition that, with any disease process, what we eat plays a bigger role that what we think. Healthy living doesn’t have to be a chore and there are simple solutions out there. Would love for you to join my support fb group that I am starting so we can learn how to best support our bodies nutritionally to fight and heal this disease process… here is the link to the fb group. It is private so I will need to add you… https://www.facebook.com/groups/938126616247691/ my fb name is stacey turner (mcdonald)


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