December 28, 2011
The next step for Parvo online data gathering and dispensing…
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
Angel said,
January 5, 2012 at 12:04 am
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…
Barbara A said,
January 20, 2012 at 1:38 am
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.
parvoless said,
January 24, 2012 at 4:19 pm
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.