Hi Juliemd, I'm sorry for what you have been thru.....It has been over 20 yrs for me too dealing with the virus. When I had the typical symptoms my dr. Would run the blood work and would always say it showed the virus had "re-activated " from my initial case of non which i don't remember when that was. Do you think the same thing was happening with us? I have all the symptoms of mono but now i have diabetes, high blood pressure, sleep apnea, and arthritis . My thyroid gland Burnt out from Hashimotos 34 yrs ago. Besides feeling exhausted, i can't find a dr. To help me ,..they are too busy taking care of my diabetes and high bp, lol

I would recommend a functional medicine physician. I am also using LDN therapy and it seems to really be helping.

It does sound similar. I don't have all of the issues you have but the recurrent infections is very familiar. (I am pre-diabetic and have sleep apnea)

I have to say that despite the last year being extra difficult, I just had a great month. I traveled to Europe wtih my family and was blessed with energy to make it through the trip. I don't know what to ascribe it to . . . many, many prayers by myself and on my behalf, more vitamin D, sweating out impurities, walking tons (which usually takes me down fast), the vitamins I started taking before and during my trip (I followed mostly what jenchaney727 posted above as well as liquid coenzyme Q--Costco sells this at a good price--Fish oil supplements--Wild Alaskan Salmon Oil--also at Costco, and a good probiotic.) Maybe it was all of the above. Who knows. It has helped me to build up my stamina and now I can excercise low/moderate intensity for much longer (30-60 minutes) without it making me sick.

I also looked at the reply posted below by akhippiechic and read about LDN therapy. It talked a bit about how endorphins help the immune system. Maybe the excitement of traveling did something too. I don't know, but I am making a point of getting outside daily, getting more exercise and trying to find ways to enhance my endorphins.

I know there are plenty more ups and downs ahead, but at least I am on a good track for now. I hope this helps and I am sorry about your suffering. It is so hard to find a dr. who understands. I haven't found one yet. I guess that is why we have to support each other.

Best Wishes,

Julie

Thanks for mentioning LDN therapy. I am looking into it. I thought the info about endorphins on the lowdosemaltrexone.org website was really interesting.

Thank you ...its great you could enjoy your trip ! There must be something to the endorphins ...when i go on a trip I usually have more energy ...enough to enjoy myself but then when i come home i crash . I am getting set up with a functional dr. My neurologist ordered did order an iron; ferritin and B 12 , the other day for my fatigue . I had a rough year with 3.surgeries on the same year so it could be part of the reason I'm having a bad flare right now. Best wishes to you as well !

My daughter read that book and then asked to get tested for EBV, it was confirmed. Now learning how to deal with it.

What is 'that book'? It's hard to find the thread of all the conversations. Thanks.

Thanks John.

This same author has a new book out called Thyroid Healing and has more Epstien Barr specific info. The book is about healing through eating healthy foods. Great book but may not be the cure all it claims to be. It certainly makes you want to eat more fruits and veggies which is always good!

Yes, I did read the book Thyroid Healing and did appreciate the 'diet solution'. I've always had a healthy diet so following his suggestions hasn't been too hard. I just don't do the juicing that was suggested. I'd rather eat 'plants' than drink them. I do drink vitamin water and love my low sodium V8 juice though I'm sure it doesn't have nearly the amount of fresh healthy vitamins that juicing has. I'm always up for suggestions. We all should keep a healthy plant based diet however, I haven't noticed any change due to diet since there wasn't much for me to change.