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Reactivated EBV results
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.
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.
When was the first time you had EBV and how long did you take to get over it the first time? Who dx it your primary? also I forgot if you said was dizzy/sinus/ears a problem for you?
I've read that. What I also think is very interesting is how many of these autoimmune syndromes (Sjogrens --- Guillian Barre) are all believed to be triggered by a viral or bacterial infection. I know the flu shot and/or the flu is suspected with Guillian Barre Syndrome. In addition to all of that... I've read that viruses could be the trigger for Hogkin's Lymphoma. I know my friend who had Hogkin's was ill with cold symptoms months before she was diagnosed. Interesting though, isn't it ?
1 Comments
Hi PlateletGal, I am new to this forum and you seem to have quite a bit of knowledge on the EBV front. I thought you and the others might be interested in my story. When I was in my early 30's I became ill with a sinus infection, that just wouldn't go away. A trip to the Medac center revealed I had Mono. I was told to go home and do nothing but rest. I'm certainly glad I did not follow that advice as I would be dead today. Within two days I was in the hospital diagnosed with Guillian Barre' Syndrome, unable to walk and rapidly declining in my ability to breath. To make a long story - short, I was in Duke Hospital for 8 weeks before my condition started to level off and improve. They then moved me to my local hospital in my hometown for rehab where I resided for another 6 weeks. Recovering from that illness took me a couple of years, as my nervous system was really wrecked. That was 30 years ago.
Since then I have had periods of time, a year here and a year there, with debilitating fatigue and pain and finally was diagnosed about 5 years after the GBS with a reactivation of the EB Virus. I only got that diagnosis from my GP after I told my him I refused to take Anti-depressants until he ran all the test he could on me to find out what was wrong. His comment was, "There is only one test we have not done, but you are not in the age group for that illness." It turned out he was referencing Mono / EBV. He came back with an apology and a diagnosis of Reactivation of EBV. I'm certain I had the virus all along and just did not know it. I also had developed Hypothyroidism during the years just prior to this diagnosis, which I'm sure was skewing what they were looking for.
I would encourage everyone who is suffering with this virus, to be persistent with your Doctor, and change DRs. immediately if they dismiss your condition!! I was then referred to an infectious disease specialist, who plainly told me he could not help me. I finally ended up in a bookstore and found a book by Dr. Jesse Stoff titled Chronic Fatigue Syndrome / AKA Epstein Barre Virus. (I think you can still get this book on Amazon) He is a holistic Dr. that studied in England and had a protocol to treat it with supplements and food, and I devoured that book. I did exactly what he said, with my eating habits, food choices natural supplements and all. Within 4 months I was back on my feet again and stayed that way for many years. I did have residual nerve damage from the Guillian Barre' and had to take great care in my routine of rest when needed along with the supplements and diet.
However, I also let my guard down, after several years of feeling good, and was under great stress in 2010 - 2015. Our family went through huge loses during that period of time and I let up on watching my diet, taking all of my supplements, and was working hard as well as trying to manage the care of my Mother-In-Law, who had developed dementia. I started noticing severe joint pain and recurring illnesses, bronchitis etc. Finally in 2016 I mentioned to my GP that this reminded me of a time in my past when I had a reactivation of the EB Virus, and could not get well. They did an EBV panel and sure enough it was back in full force. Unfortunately, my GP did not know how to treat it, so I immediately changed Drs. I am now under a practice that has an Integrative and Wellness approach and believes they can bring my numbers back down again. (Look for a Dr. of Integrative Medicine, they seem to have a more open mind to helping you.) I am being tested regularly, and I'm fighting to get my health back once again.
Yes, Guillian Barre' is definitely caused by EBV, and so are several Cancers. At 66 yrs old now, I am working hard to keep them all from knocking on my door. I've learned from my long history with this virus, you MUST keep your diet, rest and supplementation at the forefront of your mind. Let your guard down and you will pay dearly. It's easy to think when you are feeling well, "Oh I've beat this thing, I can relax" But don't be fooled, always be alert, and don't feel guilty for pampering yourself either. YOU need it to survive. You can treat it, like you said, being good to yourself is part of that treatment. Search for that Doctor that is an Ally who understands the disease, and I wish you all the best in your battle.
Thanks for letting me share,
K. Sanders
Since then I have had periods of time, a year here and a year there, with debilitating fatigue and pain and finally was diagnosed about 5 years after the GBS with a reactivation of the EB Virus. I only got that diagnosis from my GP after I told my him I refused to take Anti-depressants until he ran all the test he could on me to find out what was wrong. His comment was, "There is only one test we have not done, but you are not in the age group for that illness." It turned out he was referencing Mono / EBV. He came back with an apology and a diagnosis of Reactivation of EBV. I'm certain I had the virus all along and just did not know it. I also had developed Hypothyroidism during the years just prior to this diagnosis, which I'm sure was skewing what they were looking for.
I would encourage everyone who is suffering with this virus, to be persistent with your Doctor, and change DRs. immediately if they dismiss your condition!! I was then referred to an infectious disease specialist, who plainly told me he could not help me. I finally ended up in a bookstore and found a book by Dr. Jesse Stoff titled Chronic Fatigue Syndrome / AKA Epstein Barre Virus. (I think you can still get this book on Amazon) He is a holistic Dr. that studied in England and had a protocol to treat it with supplements and food, and I devoured that book. I did exactly what he said, with my eating habits, food choices natural supplements and all. Within 4 months I was back on my feet again and stayed that way for many years. I did have residual nerve damage from the Guillian Barre' and had to take great care in my routine of rest when needed along with the supplements and diet.
However, I also let my guard down, after several years of feeling good, and was under great stress in 2010 - 2015. Our family went through huge loses during that period of time and I let up on watching my diet, taking all of my supplements, and was working hard as well as trying to manage the care of my Mother-In-Law, who had developed dementia. I started noticing severe joint pain and recurring illnesses, bronchitis etc. Finally in 2016 I mentioned to my GP that this reminded me of a time in my past when I had a reactivation of the EB Virus, and could not get well. They did an EBV panel and sure enough it was back in full force. Unfortunately, my GP did not know how to treat it, so I immediately changed Drs. I am now under a practice that has an Integrative and Wellness approach and believes they can bring my numbers back down again. (Look for a Dr. of Integrative Medicine, they seem to have a more open mind to helping you.) I am being tested regularly, and I'm fighting to get my health back once again.
Yes, Guillian Barre' is definitely caused by EBV, and so are several Cancers. At 66 yrs old now, I am working hard to keep them all from knocking on my door. I've learned from my long history with this virus, you MUST keep your diet, rest and supplementation at the forefront of your mind. Let your guard down and you will pay dearly. It's easy to think when you are feeling well, "Oh I've beat this thing, I can relax" But don't be fooled, always be alert, and don't feel guilty for pampering yourself either. YOU need it to survive. You can treat it, like you said, being good to yourself is part of that treatment. Search for that Doctor that is an Ally who understands the disease, and I wish you all the best in your battle.
Thanks for letting me share,
K. Sanders
Oh, EBV can alter DNA for sure, although not nearly as much as chromium-6. There are cancers that are definitely associated with EBV, like Burkitt's lymphoma.
I've heard that medical schools still aren't teaching CFS and/or fibromyalgia to their medical students. They are still trying to sort out which specialists should be seeing these patients. It is frustrating, to say the least. But the good news is... the physicians who do treat our conditions, often post their treatment plans online and give us the support and answers that we desperately seeking.
Trying to track down some docs who understand EBV and got a hold of one infectious disease office that the nurse told me, "Our doctors don't believe in reactivation of EBV". I shouldn't be surprised, I guess. Why even test for it then in older adults? I'll keep searching as Denver (nearby) has some widely recognized medical centers.
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