Thursday, January 8, 2009

Thursday 1/8/08

Jessica went to school at 11:00a.m. to go to an Algebra End of Course review. When I picked her up 30 minutes later for lunch and to drive her across campus to her first class of the day, she asked to be picked up after that class. She was tired today. She missed her first class of the semester, but luckily it's U.S. History and one that she could stand to miss. She came home (with her legs hurting), went to bed, and slept soundly for 2 hours. She's dragging still, but has English homework - a short story to write.


Anonymous said...

Hello - I am slowly coming across new blogs as I too am dealing w/ CFIDS and elevated EBV loads. I am 35 and had to quit working over the summer. I admire your daughter's courage and strong will to keep going and your support of her. I can't imagine what it must be like to have a child going through this.

I was wondering if you would be able to share what anti-viral she is on and if any particular supplement/hormone has benefitted. Thank you!

Us said...

I'm sorry that you are dealing with CFIDS and EBV. I had to cut back my hours at work, and we're still trying to figure out how much school my daughter can manage. It's been a hard year (especially with it being my child!), but my daughter's strength has helped everyone involved.

She's on Valtrex anti-viral for the CFIDS/EBV. I'm not sure if that's what her doctor is going to keep her on or not. We are to do some new lab work in a couple of months to check her progress. She's on Florinef for Orthostatic Intollerance (OI), magnesium for her magnesium deficiency, and supplements to boost her mitchonrdrial function, etc. It's still a process. I can't tell you what works. We're still learning ourselves. Have you checked out the message boards at ProHealth Immune Support?

How long have you had CFIDS? Do you have a good doctor that is working with you?

I wish you the best. Feel free to email me anytime if you have other comments.


Paula said...

Thanks Laura, and my name is Paula. I have been on Sue Jackson's blog, and CFS warrior. It's nice to reach out to a kind of family who all understand. Everyone is so strong and brave. I am blessed to have an understanding husband and father who help me out.

I have had CFS for over 3 yrs now. With each year passing, I wonder if I'll ever recover. I got really worse over this past summer and had to stop everything. Sue has offered some great advice about Lyme so I am pursuing more indepth testing with that. I just have so many neuro symptoms (the worst is panic attacks) that I want to make sure Lyme isn't involved. But as of now, I know I have EBV (I take 1000mg/day of Famvir), nutritional and hormonal deficiencies and trouble sleeping. I'm on the magnesium as well, vitamin D, whey protein, fish oil, B's and C. The list never ends. I do order from ProHealth - they are great. I work with a Dr. at the Fatigue and Fibro center in Valley Forge PA. SO far, it's the best Dr. I've had. They run very thorough testing there and do nutritional IV's. The staff there could be a little more gentle though and it's so expensive.

Thank you for sharing - i'm full of questions. I will keep coming back periodically. From everything I've read, it sounds like the ones with sudden onset CFS and being young as well are both strong indicators of greatest recovery chance. (is my grammar right?) I hope this is true for Jessica!

Us said...

Thanks Paula. We are hoping for that better chance of recovery because of Jessica's young age and the sudden onset.

We are also using the Fibro & Fatigue Center - in Dallas. You may have already read that in my blog. We couldn't find a local doctor, and the doctor at F&F is the best and most knowledgeable that we've found. We get Jessica's supplements from them, so I guess you're familiar with their many many supplements. And, yes, it's very expensive. Jessica also has trouble sleeping. I'm awakened by her often. We're still trying to figure out how to best fix the sleep dysfunction.

Oh, and Sue Jackson has been a tremendous help to us from the start. I'm sure she will for you too.

I'm so glad to hear that you have an understanding husband and father to help you out. That's important.


P.S. Do you have a blog?

Paula said...

Hi Laura - I do not have a blog. I should though - even if just to have a place to dump emotions with all of this. My writing ability has gone down hill and sometimes I type the wrong word - but who cares, right? It's not about impressing other people...

Take care..