Monthly Archives: July 2015

Chronic Active Epstein Barr Virus

I’m still here!  Moved back to Utah.  We found a beautiful 1938 Art Deco home.  I wanted to be near my Sons and Grandkids, have all my things in one place, have a garden and a dog.  Done, done, done and done.  Now if I could only get my health back.  I dream about riding the mountain bike trails around here.  Absolutely fabulous and fun.

2015-07-18 08.48.57 2015-07-21 14.38.37 2015-07-25 12.13.21 2015-07-04 19.42.49  I Wish I could say I’m totally better.  I was at least functioning somewhat and having some really GREAT days here and there!  Unfortunately, I’ve recently been going through another “flare” of this Chronic Epstein Barr Virus thing.  I know there are others out there that are going through the same thing or worse and I want to say I understand what you’re going through and I pray for you and wish you healing.  I hold on and hold on….then cry and cry…then pick myself up again and focus on something else wonderful in my life that I’m grateful for.  This last episode started 2 years ago and the thought that I never fully recovered yet and it’s going to start again is almost more than I can bare.  But, I will, because I have no choice….plus, maybe what I’m going through could help someone else in some way.

I signed up to be a part of a study, Solve ME/CFS Biobank see Solve CFS an organization trying to raise money to research Chronic Fatigue Syndrome.  Researchers have discovered so many amazing new things for other diseases….hoping the focus can lead to something for this as well.

There are a few things I’ve been reading about where people have had some success.  One is using Tagamet and Zantac for chronic fatigue….read excerpt from the book here:   Tagamet and Chronic Fatigue.  I guess the idea is that it helps an overactive immune system that is attacking your body attack the drug instead.  It’s inexpensive and something worth trying.  Great Plains Lab has an article about using Zinc and Tagamet (cimetidine) helping with Candida and immune deficiencies see Zinc and Tagamet for Immune Deficiencies.  They have some great protocols for children with autism, down syndrome and seizure disorders.

I have an appointment in September with two doctors in the Infectious Disease Department at the Utah University Hospital.  I’m hoping I can at least make sure I don’t have anything else going on besides the chronic EBV and come up with a plan of action from here.  Other than that I’ve decided nothing I’ve tried with naturopaths, supplements and diets has worked…so I’m DONE with all that!  I’m just going to eat a good healthy diet, stay gluten free, continue doing qigong, meditation, keep a positive attitude and laugh.

For the people that have good health and look at me and say, “You look fine to me.” or “Maybe you’re just depressed”  or “Maybe it’s just the weather” or “I know how you feel, I was real tired today”…please, if you’re my friend all I need from you to accept me for who I am…even if I can’t do the things I used to do, I’m still the same person inside.  If you were experiencing what I am you’d feel a little down sometimes too.  I promise I won’t constantly talk about my illness, but I may need a shoulder to cry on occasionally…then I’ll be okay and can keep on keeping on.

From the book, How to Practice the Way to a Meaningful Life, “Under no circumstances should you lose hope.  Hopelessness is a real cause of failure.  Remember, you can overcome any problem.  Be calm, even when the external environment is confused or complicated; it will have little effect if your mind is at peace.  On the other hand, if your mind gives way to anger, then even when the world is peaceful and comfortable, peace of mind will elude you.