Reactivated EBV results

[ott70]

My recurring symptoms started up back in February. Over the course of the last few months, I've had a multitude of symptoms: Palpitations, abdominal pain, back pain, numbness/tingling in legs/feet, burning in the feet, chest pain, joint pain, muscle pain, fatigue, low-grade headaches, indigestion, night sweats (but not very many of them and not for awhile now), chills, hot flashes, frequent urination, conjunctivitis, ringing ears, and painful testicles. So basically, I feel whatever I have courses through my body because my symptoms change from week to week. Some days I feel like I'm recovering and then the next day I'm dragging. Or sometimes it works in half-day intervals.

Pretty much all of my testing has come back negative: gobs and gobs of blood work, CT of chest and abdomen, head MRI, EMG of major leg nerves, echocardiogram, heart cath, chest x-ray, lumbar spine x-ray, holter monitor, urine tests, ultrasound on thyroid, and upper GI.

Findings, not much: low potassium (briefly), low vitamin D, moderate acid reflux, mild gastritis in stomach, small kidney cysts. Some numbers on my bloodwork at times were a little out of range, but most of my CBC's have been within range.

The one item that has stood out is my EBV test results. The antibody testing shows that I contracted EBV a long time ago, but all of the current antibodies has high titers.

[ThanaC]

Well I was diagnosed in my 20s with EBV and have reactivated EBV again at 51 for a total of 4 times since first diagnoses. So everything you listed is about right. Holistic Doctor is the best way to go. Mine helps with Vitamins Minerals and herbal combos and diet change. Stay away from acidic food like tomatoes as much as possible, red meats tend to irritate as does sugar and caffiene. Hang in there and yes the fatigue can be the pits. Do what you can when you can but never try to do a months worth in one day :) Take breaks between chores. Lots of fluids.

[Bman77]

I’m 40 and have had four flare ups since I was twenty after a nine month battle with mono. It’s super frustrating as a parent and active person with a full time time. This isn’t mental. Stress brought it on just like herpes 1 and 2. I’m on a month and a half thought I was getting better after a few weeks and went back into the gym and got worse? Any ideas /supplements? Normally work out fours days a week but going to the gym right now is not a good idea. Trying to listen to my body.

[ThanaC]

Well I was diagnosed in my 20s with EBV and have reactivated EBV again at 51 for a total of 4 times since first diagnoses. So everything you listed is about right. Holistic Doctor is the best way to go. Mine helps with Vitamins Minerals and herbal combos and diet change. Stay away from acidic food like tomatoes as much as possible, red meats tend to irritate as does sugar and caffiene. Hang in there and yes the fatigue can be the pits. Do what you can when you can but never try to do a months worth in one day :) Take breaks between chores. Lots of fluids.

[jjewell1076]

I was wandering if you ever found anything in addition to the ebv out? I am experiencing the eact same thing right now. For two months. the chest pain, muscle twitches, fatigue, back and hip pain. I get really dizzy often. I aso have really cold hands and feet all the time!  I have had all the blood work, head ct scan, mri of head and back. Only thing positive was a high reading >8.0 of ebv. I as well hope its all it is but cant help but worry its something the drs have missed and this is just the easy answer. I hope our feeling better. Thanks

[esmelralda]

Hello. I diagnosed myself with the EBV virus in July 2013 as my son had it  three years prior. As you all mentioned, regular doctors are completely ignorant or stupid when it comes to the EPV virus. I woke up one morning and literally could not get out of bed, had a terrible sore throat, swollen glands and extreme fatigue. After a day of that my left arm got paralyzed. When I did go to the doctor, she sent me for x-rays and diagnosed as arthritis of the neck. Like you have a sore throat with arthritis. The only way she agreed to the EBV test if I agreed to the x-rays. My test results was 270! supposed to be 30 in a healthy person. Thank you for all your posting. It is a very depressing disease that you think you're very misunderstood. It has been a year and I thought something was wrong as my back was completely paralyzed,  I couldn't turn my head , had horrible night sweats and a headache that won't go away. Dr. said it was a muscle spasm, sees those all the time, take those muscle relaxer and you'll leave. What a crock!
I've spoken to my OB/GYN who is a nurse practionner

[rarmccoy]

Hi Deb. I have Selak's book, and you're right, it IS great. Another good one I recently obtained (am almost done reading it) is "The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life" by Patricia A. Fennell. I have Fibro, evidence of an old exposure to EBV (and am now looking at that more closely), hypermobility syndrome which is now being re-evaluated as possibly Ehlers-Danlos Syndrome and so forth. I'm trying to find a relatively local (within 5 hours or so) geneticist to help with the EDS bit, but have decided to start with a rheumatologist a couple of hours from me who has a very good reputation. I'm really wondering how much, if at all, the EBV might have contributed to the firbo. Lyme tests have repeatedly come back negative despite having grown up in a high-incidence Lyme area. I still think that's what it might be, personally. (Oh, and I have Asperger's on top of everything, so my perspective is occasionally a bit unique. LOL) Cardiac issues, GI issues, Reynaud's, low-normal thyroid (which I think is too low for me), lots of other stuff too....

Becca

[DebMeyer56]

I have been tested for EBV and the labs came back that I have antiboties for EBV.  For all that is battling this illness and CFS please seek out a Functional Medicine Doctor in your area.  They deal with Fibro, CFS, Epstein Barr and all the other "invisible illnesses".  A great resource is Dr Amy Myers in Austin, TX.  Just google her name.  She isa wealth of knowledge on these illnesses.  I have even considered flying to TX from OH to see her.  She requires one in office visit and from that point forward can do phone consultations and labs as well.  She is the best doctor out there on these illnesses.  She was on Dr Oz this week.  She also has a podcast you can download and educate yourself about all these invisible illnesses.  A great book to get is "You Don't Look Sick!  Living Well With Invisible Chronic Illness".  by Joy H Selak