April 20, 2016

We are back and Live!

Posted in Uncategorized at 3:19 am by serenamuse

Terribly sorry. I have been locked out of the account for months, it wasn’t accepting my pass word and would not let me change it. No live support available. Left a bunch of messages on the blogs and someone must have done something because finally I am in again! I have gone through and approved all pending posts. I’m so sorry for the delay. I hope you can all get chatting again right away. Here’s to good health and very little pain and exhaustion!

October 30, 2014

Interesting new study

Posted in Uncategorized at 5:13 pm by serenamuse

I find this new study encouraging, as they are now finding physical markers for the long term symptoms, but yet it also raises more questions. Were the brain abnormalities there before the Parvo, and thus make us more susceptible to the virus? Or did the virus affect our brains? http://www.iflscience.com/brain/brain-abnormalities-discovered-patients-chronic-fatigue-syndrome

February 20, 2014

A new year

Posted in Uncategorized at 4:51 pm by serenamuse

Have any of you found that you have recurring UTI’s that never seem to grow bacteria on the culture? Do the doctors just make excuses, saying things like, well, the culture may have been contaminated, or we lost the sample, or maybe it is just too early for it to grow, you are just really sensitive to the pain? Do they just throw antibiotics at you, often needing a second round? Do the symptoms improve only to come back at a later date? Well, this has been me for the past ten years. I finally have a new GP who said, you are not having UTIs. I think this is CBP (chronic bladder pain) and sent me to a urologist. I had never heard of it, also known as interstitial cystitis. http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/basics/definition/con-20022439 It is common among women who have other chronic pain issues, like fibromyagia, CFS, Parvo, though men can get it as well. The latest research suggests that it is not an isolated condition but just one more system in your body being attacked by whatever is causing your other pain issues. This makes sense to me as I had an infectious disease doc tell me years ago that the Parvo will affect every system in your body. Of course, there is no one way to treat it, and there is no cure. The first thing they have you do is go on a very restrictive diet until the flare up is over. I’m trying this now and believe me as a vegan I didn’t think I could restrict any more. I was wrong! Nothing to drink but water. Eliminating all

  • Alcohol
  • Artificial sweeteners (aspartame and saccharin)
  • Coffee
  • Citrus juices
  • Cranberry juice
  • Hot peppers
  • Soda
  • Spicy foods

but that is just the start. No fruit except blueberries and pears. No chocolate or chocolate flavored anything. No tomatoes. No nuts, except cashews and almonds. No vinegar, soy sauce or tofu. No bread that has rye or sour dough, or preservatives or MSG. No onions. I am having to rethink my entire way of eating. I’ve lost two pounds in two days. Crossing fingers that it will work! In the mean time life and food are very bland!

August 29, 2013

Summer fun and not so fun – Surgery and ACUPUNCTURE

Posted in Uncategorized tagged , , , at 7:32 pm by serenamuse

Well, as a rule summers are pretty lousy around here. We are either moving, or not moving but broke. This summer seemed hopeful. I am teaching so not so broke we had a few fun family outtings planned. We did manage one weekend away and I pulled together a really great film project that is still in the works, but in the midst of things I got back a mammogram with an area of concern. This started the series of waiting for dates, having horrific night mare inspiring biopsy, waiting for results, while trying to heal from that invasion, getting results, needing surgery, along with another horrific invasive treatment, surgery having complications, long much more involved recovery,…the results were good. But now I have been faced with recovery from the surgery and nightmares. As a person with parvo you know how it goes. You know the fear of “will this set me back?” “will the parvo flare up?” “how long will I be down for the count?”. The pain meds just made me sick, so I decided to take things into my own hands and go to an acupuncture doctor. One session took away all of the stabbing 7 or 8 on the pain scale pains. I’m now on day eight of going in for treatment with needles and herbal tea. The pain is nearly all gone. The swelling is way down and the incision no longer angry. I’m still though exhausted, still have areas of numbness and hard skin. We are working on that but she says it will take time. I’m am drinking the most disgusting witches brew of a tea ever imagined. I do though have a little more energy today. Time will tell. I am wondering, what are your experiences with acupuncture? Has it helped the parvo? How?

November 11, 2012

Fall decline and post mid terms

Posted in Uncategorized at 6:52 pm by serenamuse

I don’t know what it is but every semester a week or two after mid terms I get hit with the exhaustion, shakes, and lower abdominal discomfort. I swear it feels like a UTI, but that never shows up positive on any of the tests. I thought maybe ulcers, but that is a negative as well. So, I chalk it up to another parvo thing. It is getting old though! It disrupts the progress I was making with my work outs and disrupts my eating, because suddenly nothing sounds appealing. So, then I start losing weight and feel like I’m turning into a walking stick figure. Yep, complain complain. Do any of you get the abdominal thing? Just feels achy and unhappy, but never throw up. Usually the doc gives me antibiotics (a sulfa drug) and eventually it goes away, even though they tell me nothing is there…

Heart Failure

Posted in Uncategorized tagged , , at 6:44 pm by serenamuse

So, my husband was listening to NPR yesterday and was shocked by this story. I listened to it online and felt I should share it. Have any of you had such experiences? Have you heard of this doctor or treatment? http://snapjudgment.org/heart-failure

August 3, 2012

Reply to “Oral Meds”

Posted in Uncategorized at 5:43 pm by serenamuse

It is interesting how so many of us have similar experiences. I guess we should pay attention to what is  being said on the blog before trusting doctors. It is painfully obvious to me that we are the best judgement of our own bodies. They don’t understand our experience. So no oral meds for me – of any sort – anymore. I have not tried going without wheat, but am going to. I’ve been really tired as of late. Of course we did make a big move last month – are now in Fullerton California. I find it takes so long for me to just find routine again and I NEED ROUTINE to survive.

February 22, 2012

Oral Meds

Posted in Uncategorized at 2:52 am by serenamuse

So yesterday I found myself scared and miserable. All week I’ve been feeling lousy and after a while you start to fear that your body is spiraling out of control again. Well, last night I had one of those DUH moments. Where I remembered that my dermatologist has started me on an oral medication for hormonal acne three weeks ago. I didn’t have any problems with it to start out, but I did read that it is one that builds up in your system. I read the possible side effects and low and behold… exhaustion, dizzy, faint,blurred vision, difficulty concentrating, head aches, upset stomach and so on. Well, I feel better knowing that there is a possible cause to my decline. and will quit the Minocycline. My experience is that I really can’t tolerate any oral medications. If there are side effects I’m going to get them. Have others experienced this?

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

November 3, 2011

November Update – a vaccine in sight?

Posted in Uncategorized tagged , , , , at 2:03 am by serenamuse

Thank you Charlotte for posting this link http://www.menafn.com/qn_news_story.asp?storyid=%7Bc36e3cb1-bf16-488e-988b-faf747cdde75%7D

It sounds interesting but I’m not sure I understand what it means? Can someone out there decipher? Is this technology government owned and up for sale? How amazing it would be to think there might be a vaccine…

November is upon us and I am down with a bug. Funny, I usually avoid these things and just suffer from the parvo stuff, but I am teaching now and know at least one of my students has been out with something similar. I appreciate everyone’s posts. It is so helpful to see that there are things that are helping some of you. We still seem to be dealing with doctors who are behind the times on parvo though and that makes me sad. Please do let us know if you encounter a good doctor who understands the magnitude of what you are going through. They are far too rare.

Do any of you have suggestions on how to survive the coming holidays, along with the social expectations and subsequent feelings of inadequacy and letting others down? That is always a hard one for me. Whenever I think I’ve moved past it, it looms again.

With weather changes usually comes parvo changes too, more joint pain, more fatigue. Please continue to share anything that is helping you get through. I for one, do much better when I can afford a good massage. It usually takes two one hour sessions in a week to make a difference. Unfortunately my insurance does not cover it or I would go more often. Someone needs to lobby for that!

Hope you are enjoying beautiful fall days!

Serena

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