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Posts (85)

Nov 30, 2019 · Traveling with Chronic EBV. Any tips? in Infectious Diseases

Hi @januaryjane Here is a link to an article on travel tips written by an MD who has dealt with chronic illness.


Anything you can do to lessen stress will be helpful. Get some earbuds and tune into a meditation app. Ahead of the trip, intentionally spend 10-15 minutes picturing successful travel in which you feel calm and healthy. Those things have been helpful for me. I wish you safe and healthy travels!……Marianne

Nov 8, 2019 · Questions concerning Flu shots and blood sugar in Infectious Diseases

Hi @jbri I didn't get the flu shot while in a relapse as recommended by my doctor at the time. I did get one this year since I am well and my doc had no preference. The flu shot is not 100% effective of course. Things like minimizing stress, getting plenty of water, proper sleep and nutrition are important. You can discuss it with your dictor since he/she knows your unique situation. I doubt the nasal spray would be asvised since that is a live virus. …I have not dealt with elevated blood sugars. I had just the opposite from HPA dysfunction. Wishing you the best in your health journey.

Oct 23, 2019 · Treatment for chronic epstein barr in Infectious Diseases

Hi @cstrandberg Welcome. No, you are NOT going crazy! My story is similar to yours. I also had mono at age 20. My latest major relapse of EBV was at age 43 (although not recognized by doctors — even with a positive IgM). I am now 47 and am just starting to get back to life after a wild roller coaster ride of ups and downs. I now know that CFS was most likely the cause of my EBV relapses. Unfortunately CFS is not taught in most med schools and most of the conventional medical community does not understand what this disease is and what it does to the body. Even the Mayo Clinic website is not up to date. However the CDC is. You can search for info about CFS at their website cdc.gov. There is even a section you can print off for healthcare providers that explains the pathophysiology of the disease and that it is a REAL disease. Keep in mind, doctors thought that those with MS were crazy before the advent of the MRI. They actually called it hysteria until the MRI came along and showed that there was deterioation of the protective sheath around the nerves……. There is a lot of current research in CFS now and it is promising. Hopefully conventional doctors can get up to date on what this disease does to the body and how devastating it can be. I will leave a few links you can check out of you'd like. https://solvecfs.org/what-is-mecfs/ https://emerge.org.au/ If you'd like to hear more about EBV and some of my journey you can check out these posts on my blog https://backtolifewellness.blogspot.com/2019/03/the-sleeping-giant-in-us-all-epstein.html


It is possible to recover! I have made tremendous strides this year since working with Dr. Rodger Murphree and doing the DNRS program (www.retrainingthebrain.com). Less than a year ago I could not walk from my bedroom to the kitchen without having to sit down. Last month I enjoyed hiking for a few days in Kentucky! 🙂
I hate that you are going through this and wish you well soon!!!

Sep 24, 2019 · Bruising in Infectious Diseases

Hi @jnk. I have experienced EBV but not bruising. That sounds concerning! If it were me, I'd be sure my doctor knew immediately and proper bloodwork be done. I hope you feel better soon!

Sep 24, 2019 · Is chronic reactivated EBV different from chronic active EBV? in Infectious Diseases

Hi @mattkl817 ….I had a similar experience with my first known EBV infection when I was almost 21 and then a bad relapse 6 months later. I was working as an RN that included 12 hour shifts, often no breaks, and odd hours which I am certain contributed to the relapse. After 3 months off, I could only go back to work part-time and pretty much had to "couch it" on my days off. I know that is no fun for a twenty-something, right!!?? Anyway, I am now 47 and have a greater understanding of my journey with EBV relapses. I relapsed again in my 30s and most recently at age 43. I am now thankful to be on the upswing of my last relapse. I have spent the past few years reading and researching about EBV and chronic fatigue syndrome. Most people can have an EBV infection or even develop mono and go on to live healthy, happy lives. But there are some, like us, who struggle with those life-changing relapses. The theory is that the stress from the initial virus sets the body into a forever stress mode causing a cascade of challenging symptoms for the patients and the doctors. I obviously can't diagnose or advise any treatment for you or have the room in this platform to explain everything in detail, but I can share a few things I've learned….EBV was only part of my illness. It turns out that it was Chronic Fatigue Syndrome which involves many other body systems, not just the immune system. It is not well understood or even recognized by conventional physicians. Even places such as the Mayo Clinic do not have up to date information on their website. Mayo Clinic still indicates cognitive behavioral therapy and graded exercise therapy for CFS which have been disproven to be effective and may even be harmful. The CDC is a better source. Only recently has there been updated information published in medical journals. Be aware that any kind of stressor whether it is lack of sleep, surgery, work stress, relationship stress, another illness — can set you back. According to the research I've done, there is not one thing (such as a medication or lifestyle) that helped me overcome the debilitating fatigue. It involved hitting it from many angles — a clean diet, supplements, DNRS (retrainingthebrain.com), proper sleep, and stress management to begin to get well. Dr. Rodger Murphree in Alabama (www.yourfibrodoctor.com) has been a tremendous help along with Annie Hopper's DNRS Program (www.retrainingthebrain.com). You can google both of those people for more info if you'd like. Also, be aware that conventional doctors may not understand EBV and the fatigue you are dealing with. Don't be disheartened by that. Most have NOT been educated about recurring EBV and/or CFS. Many of those suffering however, have had results with a functional medicine or integrative physician. You are your best advocate! Don't give up! Take care of yourself!

Aug 19, 2019 · Treatment for chronic epstein barr in Infectious Diseases

Hi @34micasita Your story sounds similar to mine. What you are going through is difficult — understatement!
Here are some links that may be helpful. http://www.ebvhelp.com
You can also check out my blog. http://www.BackToLifeWellness.blogspot.com
Use the search box for my posts on EBV, and Tips For Dealing With a Chronic Illness. Wishing you well soon!!! …..Marianne

Aug 19, 2019 · Treatment for chronic epstein barr in Infectious Diseases

Yes I believe she works with people long distance. I have had doctors chart things that were not helpful in my records as well — such as " have you ever considered that maybe there is nothing wrong?" I can only laugh at that!! Anyway, yes I am doing much better I am hoping to get back to work next year. I have been working with Dr. Roger Murphree since January. He is specialized in chronic fatigue syndrome and that is basically what I have.

Aug 19, 2019 · Treatment for chronic epstein barr in Infectious Diseases

Hi @kittykiernan What you were going through is difficult. My story is a little different but similar in that I could no longer take care of myself and had no help from conventional doctors. Here is a website that may be helpful. Kasia Kines PhD has a passion for helping those with EBV. She provides lots of information in her book and website. ebvhelp.com