chronic Epstein barr + Chronic Fatigue Syndrome..

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vplaingirl
New Member


Date Joined Jun 2006
Total Posts : 1
   Posted 6/22/2006 6:20 AM (GMT -7)   
Like everyone on here im looking for ways to eliminate symptoms.. the tiredness and ext.
My doctor put me on a antidepressant, to help give me more energy.. but ive been taking it for almost a year, and still do not feel a difference. All over the web, i read of people changing their diet.. i was wondering to what exactly?
Has changing your diet helped you? and if so what do you eat regurarly?
When i asked my Dr. all she told me was to eat a well balanced diet.. but some of the food to a well balanced diet i find make my symptoms worse. I also read somewhere that when you have CFS you should try to get under your normal weight?.. really doesnt sound healthy to me, especially considering with the EBV every few weeks I catch the flu or something flu like.. has anyone else heard of that? confused
 
 

ohthepain
Regular Member


Date Joined Mar 2005
Total Posts : 353
   Posted 6/22/2006 7:27 AM (GMT -7)   

Hi, first off let me elcome you to Healing Well!

I don't have CFS or Epstein Barr, but I have Fibromyalgia and this has caused me a world of trouble with extreme fatigue. None of the anti-depressants they gave me did much for the fatigue. I was falling asleep at my desk at work, in the middle of conversations with people, pretty much anytime anywhere. Then my doctor prescribed Provigil and it has made a big diffrence.  I feel much less fatigued and I'm able to stay awake most days, I don't feel like I'm dragging myself around as much anymore either. I haven't had any side effects with it, it doesn't make me jumpy like the aderall they gave me before did. I am wondering if anyone else here has tried it and what it has done to help their CFS or EB symptoms.

Again, welcome to Healing Well, I hope you get some answers soon, good luck.

~Carina~

z1
New Member


Date Joined Jul 2006
Total Posts : 5
   Posted 7/19/2006 1:55 AM (GMT -7)   
I've been on Provigil for the last four years, and it has made a world of difference for me. It is by far one of the most effective treatments that I've found. On the other hand, I haven't found anything related to diet that has made a dramatic difference.

Most doctors know next to nothing (or less) about CFS. Dr. Paul Cheney, one of the two doctors in the Incline Village epidemic who has become one of the leading specialists in this illness, has said that patients who want to fully recover from this illness will have to do a lot of the work of managing their health themselves. My own experience backs him up completely. (I've been totally disabled with CFS for the past eight years, with sporadic episodes in the eight years before that.) I would strongly recommend the book "From Fatigued to Fantastic!" by Jacob Teitelbaum. The title is a little corny, but it contains a wealth of information, and is overall the best book on treating this illness that I have found. By following many of the suggestions in this book, I've experienced major improvements in my health.

Antidepressants are a common treatment for CFS, but in many people they do nothing. For energy, I think the single most effective supplement I use is Co-E1 NADH (formerly Enada), which you can find at www.enadh.com. You can find on their site reports in peer-reviewed medical journals of trials demonstrating the usefulness of Co-E1 in people with CFS.

This illness may not be curable yet, but it is certainly very treatable. But it does take a bit of work to find out what treatments are best for you.

Aldo
Regular Member


Date Joined Jan 2006
Total Posts : 289
   Posted 7/20/2006 7:30 AM (GMT -7)   
Vplaingirl, I was wondering what foods make your symptoms worse? I do know that shellfish and alcohol makes it worse for people with gout. It used to be called the "rich man's disease".

I would also love to be underweight a bit. I am about 20 lbs overweight.

Thanks for the very good info in this thread :)

Rj

Ronnie99
Regular Member


Date Joined Jun 2006
Total Posts : 122
   Posted 7/20/2006 5:59 PM (GMT -7)   
Did you have an active EBV infection where you got either mono-like symptoms or the more chronic symptoms such as slightly swollen glands? I was diagnosed with an active EBV infection in March and have not been right since although I've gotten somewhat better over time...

panicky
Regular Member


Date Joined Jun 2006
Total Posts : 163
   Posted 8/11/2006 11:08 PM (GMT -7)   
is mono an ebv infection and if i was positive for mono should they have tested me for ebv i been so weak since like march and my muscles ache and feel weak my nodes are sore i get itchy skin had light sensitivy when light would hurt my head and rib soreness once in a while, does anyone know what this sounds like does it sound like fibromylagia,or CFS

LexiLex
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 8/12/2006 3:50 PM (GMT -7)   

Hi panicky,

I'm sorry you're not feeling well.  I just wanted to say that EBV causes mono.  I tested positive for Chronic Epstein Barr a couple of months ago.  Then I had a more sensitive test done to check for the active virus, not just antibodies.  Although I've learned lately that nothing is ever 100% reliable, mine shows it was in the past and I'm hoping that really is the case.  I had mono when I was 12, so it would make sense that I could have antibodies but not an active infection.  If your doctor hasn't made sure it's an active mono/EBV infection, maybe that's worth a try.  You can do the same kind of test to look for an active case of cytomegala virus (CMV).  This is the herpes family of virus that causes mono, chicken pox and all that stuff.

Good luck!

Alexia 



panicky
Regular Member


Date Joined Jun 2006
Total Posts : 163
   Posted 8/15/2006 7:30 PM (GMT -7)   
thank you lexi i still get pain deep in my muscles and been tired alot but can't fall a sleep without my xanax but i can't move much i have no energy and sometime itchy skin, pressure in back of my head, does this sound like cfs at all thank you all sorry to be a pain

scaredofswine
Regular Member


Date Joined Oct 2009
Total Posts : 52
   Posted 11/15/2010 9:57 AM (GMT -7)   
Wow here is an old thread i found from my old nickname panicky from 2006
Fibromyalgia, Manic depressive, Panic disorder, Anxiety attacks, Degenerative disk disease,

Xanax 1mg twice a day, hot baths for the pain, due to strange doctors where i live
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