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princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 2/5/2013 2:25 PM (GMT -6)   
Hi everyone,

I'm a veteran of the UC forum – thankfully been in remission for years, but I still try to lurk and help out over there – but I'm new to the CFS section.

I've been feeling lousy for months. A gradual onset makes it hard to track exactly when this started, but I know it at least dates back to summer 2012. Blood tests revealed what I guess would be called chronic EBV. My GP said they tested for EBV antibodies and anything over "11" was a positive infection and mine was 140!

I've read several books, done the online research and I'm still at a loss. It looks to me like CFS is just a generic term doctors use for a multitude of problems. I had a bad bout of mono when I was in college (YEARS ago) that caused me to drop out of school for a semester. I understand EBV can be reactivated, but I've been given no clue what to do to get it back under control. I know with mono, I was told to rest, rest, rest, but that doesn't seem to be helping now.

I'm trying to get back to a clean diet, cut out sugar. I'm taking D-Ribose. I'm doing mild weight training and yoga, trying to get as much sleep as possible. Can't really tell that anything is helping.

Would love to hear suggestions from others fighting EBV.

Thanks!
Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Last scope showed no inflammation at all.

Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 332
   Posted 2/6/2013 4:12 AM (GMT -6)   
Hi princesa, welcome to our corner of the Forum. Unfortunately you aren't getting any treatment from your doctors because there isn't any. Yes this is a redo of mono but 100% worse, it never goes away or sometimes it does, spontaneously, with no medical reason and even though our wonderful practitioners can diagnose it, they still look at us like we are making it up. Everything you are doing is what I do or have tried or would try if I could stay on my feet that long. i don't know about the diet, I have Celiac's too, just diagnosed, and i have heard that the gluten/wheat-free diet is good for everybody with CFS irregardless of why, but i know i would go back to bad, unhealthy bread and pasta in a heartbeat devil . So hang in there and Keep in Touch.
Crainiotomy Lg. Meningioma Dec.02, Bi-Polar 2004, SMI 06, Gluten/Wheat/Dairy Intolerance, IBS 06, Migraines w/pseudo-seizures 07, Dev. Septum Sur. Sept.07, 2nd Men./Tumor Gamma Knife Rad. Dec.08, Radical Hysterectomy Sept.09 w/instant Menopause, Fibromyalgia 09, Disability since 09, EBV/CFS 11,Vomiting/Multiple Ulcers, Vertigo 12, Chronic Fatigue Moderator 2013.No meds list I ran out of space.

falco
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 2/22/2013 9:08 AM (GMT -6)   
Hello,
 
I am a new member and I was diagnosed with chronic EBV and CFS in 2003.  I had a friend in remission and I asked her how she did it.  My friend said to drink 5 cups of green tea a day.  Within 2 weeks of drinking the tea, I felt so much better, I had quit falling and the flu symptoms stopped.  So whenever I feel like the symptoms are coming back, I start loading up on green tea and I get better.  The main thing I have not been able to change is the amount of sleep I need, which is 12 to 13 hours which I can only do on Friday night for Sat.  During the week, I only average 6 to 7 hrs of sleep a night.  It is very hard to work barely can make it each day because of being so tired, not the other symptoms.
 
Try the green tea, what's it going to hurt?  Very good for you in all respects because it stops the free radicals trying to take over in our bodies.  Free radicals are what makes humans sick.
 
Falco

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 3/20/2013 1:56 PM (GMT -6)   
Thanks, Falco. I already drink green tea, but not five cups a day. Perhaps I need to increase my intake.

OTOH, I do have good news to report. As I mentioned in my first post, I was diagnosed with UC that's now been pretty much in remission for years. Dietary changes had a lot to do with maintaining remission. My diet has slipped a lot over the last few years. In combination with stressful life changes, I think that's what's opened the gate for other autoimmune conditions - Raynaud's and chronic fatigue/chronic EBV - to raise their ugly heads.

So, after some research, I decided to not only go grain free again, but to go on the Paleo way of eating and use what's called the autoimmune protocol, which is even stricter. It's only been two weeks so far, but my energy level is already better than it was. I was even able to complete an entire kickbox workout, like I used to do before I got so run down. For anyone who's looking for answers, I'd suggest giving AI Paleo a try.

peachgamom
New Member


Date Joined Mar 2013
Total Posts : 5
   Posted 3/28/2013 7:34 PM (GMT -6)   
Questions to Falco and Princesa:

Falco - is it plain green tea? I will do whatever I can to make it through work. Some days the fatigue is mainly in the mornings but sometimes it lasts the entire day. I try to get my sleep during the weekends but I am so tired during the workweek I am just trying to get through it. Taking the green tea to work tomorrow.

Princesa- the paleo diet seems to be very similar to an anti inflammation diet. I have started only eating anti-inflammatory foods and no proceesed foods but I am thinking about doing the Paleo diet b/c it seems similar.

linchu13
Regular Member


Date Joined Mar 2013
Total Posts : 32
   Posted 4/1/2013 3:52 PM (GMT -6)   
I was diagnosed with EBV and Chronic Fatigue over 15 years ago! Last year I was diagnosed with Fibromyalgia. There are many doctors who now believe that Fibro and Chronic Fatigue are the same thing. When I have a flare of EBV I feel drained, my lymph nodes hurt, headaches and all I want to do is sleep. I haven't had a flare in a couple of years, but now the Fibro has taken over.
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