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523927 tn?1257022304
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.
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I think the long list of problems react differant in each person, for example I have not had the joint pain that you have but have had the chest pain,  Fatigue comes and goes now but at first WAS in the bed all the time.  If you dont mind me asking how old are you, I am 47 and they say the older you are the more severe the problems and the more time it takes to get over them (just like everything else lol)
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In my case, for many years I was able to keep my symptoms under control and work full-time. However, when I attended college classes after work... I couldn't do it. I also had so many absences at work that I had to get the FMLA a few times (thank you Clinton !)  So there are people who manage CFS, as I did. But if you get stressed or get worse... you would be surprised what can happen. And that is why it is important now (my opinion) to address the pathogens and/or take supplements to manage your illness and not let it eventually get worse.

It is funny because with this illness... sometimes I would have blurry vision. I would say it has happened about 10 times over the last decade or so. And then I would have another symptom. Now I have joint pain, although I didn't have joint pain when I was working. It is a very complicated illness... as I'm sure you are realizing. And one that most physicians do not want to take the time to research or treat.
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523927 tn?1257022304
I'm 38 years old. I used to take pride in the fact that I would never get sick, or if I did it was usually just once a year during cold season and I wouldn't have to miss any work. Maybe my immune system suppressed all of those colds and now I'm getting a big gotcha. Maybe my age is helping with the severity of the systems, although they sure weren't any fun a few months ago.

I agree with addressing it now. I think my holistic doctor has helped the most and sometimes I tell myself that it should be enough and I shouldn't bother with the regular medical doctors. But then I tell myself that I sure would like some hard medical evidence of what's going on. No matter what, I'll stick with the holistic approach because there has to be something good in those herbs for people to be using them for thousands of years.
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Check your inbox... I'm zapping you some information that was VERY helpful for me.

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Could you share some info on what kind of herbs you are using,  I sure can relate to what you have said about being healthy before this. I did not even have a primary before this thing, had been to a doc maybe 10 times my whole life and most of them were for pre-employment.  I have ordered Jernigans anti-detox 2 will let you know how it goes when it comes in.   Padro*
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These are the supplements that my Endocrinologist recommended for me. I found out later that many fibro/CFS experts recommend these supplements for CFS:

ACETYL-Carnitine
COQ10
B Complex (sublingual - I buy my drops at Walgreens)
Zinc
Powered Magnesium
Vitamin E & Vitamin C
D-Ribose
Omega 3 Acids (fish oils, flax seed oil, etc.)


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523927 tn?1257022304
Multi-vitamin too, of course.

The herbal tinctures I'm taking are a combination of vitamins and herbs. I don't have the bottles with me at this moment, but they are herbal tinctures. The holistic doctor I am seeing has the mixes made specifically for him, so they are proprietary and not something purchased locally or off the Internet. However, I believe they are somewhat similar to what some other companies offer for herbal tinctures. I believe PlateletGal sent us both a link that has some type of virus tincture.

For me, I have taken tinctures that are labeled for the adrenals, immune system, detox/lymph, heart/lung, thyroid/brain, kidney/bladder, liver, and some trace minerals. It varies from office visit to office visit on what tinctures I will be taking at the time. The ingredients are a variety of vitamins and herbs that are known to support the certain areas of the body they are labeled for.

My holistic doctor sounds somewhat similar to PlateletGal's in that we are supposedly kicking up a lot of stuff in my system that I have accumulated over the years. The goal is to combat the viruses and bacteria in my system one by one to get the immune system working properly again.
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= )))  --- I was also taking many of those herbal tinctures for years... even before I was FINALLY diagnosed with CFS. I found out then that the only thing that helped me was alternative medicine. And the alternative medicine practitioners spent more time with me and didn't accuse me of faking an illness. Unfortunatley many CFS patients have been through that, although I haven't.

It is amazing what some of these homeopathic remedies / herbal tinctures do. I mean Dr. Jernigan formula's are actually killing the bacteria in lyme patients ! He isn't using antibiotics either ! It isn't necessarily the herbs that are in his formulas... he does something called "imprinting"... which is similiar to homeopathy. If you've ever had EAV testing (highly recommended, but very expensive) done.. you'll know what I'm talking about.

Glad you are on a good path, ott ! I hope you found the information I sent helpful.


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523927 tn?1257022304
Definitely, thanks for the info. While I know the good path will take awhile, I sure could have used a dose of it last night and today. Chest pain, palpitations, back pain, and abdominal pain. Ugh.

Curious enough, we splurged on some Subway yesterday and the wife and one of my sons also experienced some stomach aches. So I'm wondering if my compromised immune system made me more easily susceptible to some bad food. My guess is "yes".
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Thanks for the info, will try the Jernigans when it comes in, hope it helps.
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For those of you who wish to actually see CFS patients worst nightmare... L-form bacteria:

http://bacteriality.com/2008/05/07/mpintro/

Highly recommended.


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I failed to ask you did you have a colonscopy and/or a endoscopy done on your ab pains?  I did along with a AB CT and was told all good rx a anxeity pill for the second time, have not taken any of them.  It seems that if the Dr does not have a positive test it MUST be in your head.
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523927 tn?1257022304
Endoscopy for myself. Moderate acid reflux in the esophagus and mild gastritis in the stomach. Taking a prescription for the acid reflux. No colonoscopy since I haven't had much change in my bowel movements. I also had an AB CT after a weekend of back and abdomen pain a couple of months ago. Negative results other than a couple of small kidney cysts.

My abdomen pain has subsided for the most part today, but I have some numbness and tingling going on with my right side. Since everything has checked out okay so far, I'm going to have to assume a CNS effect with my nerves. Hopefully it subsides sometime today because it's unnerving (no pun intended). I believe I have read that EBV and CFS can cause numbness and tingling from affecting your CNS.
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Thanks Ott, My gatro just wanted to make sure because I was approaching that 50 thing, Still no clue on the minor ab pains, as you said I guess CNS, just dont want to take the anxeity meds, to me that will not help the main problem what ever that may be
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523927 tn?1257022304
Thanks for that link about L-form bacteria and the MP. That really opened my eyes and now I'm wondering if I should take myself off my 2000 IU daily dose of vitamin D3. Even more creepy is the holistic doctor I'm seeing told me awhile back that my body is telling him I don't need any extra vitamin D.

Did you say you were doing the MP?
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I was on the MP and then recently switched to Jernigans... only because Jernigan's does the same thing, but without the antibiotics. And Jernigan's formulas apparently are designed to "mop-up" the toxins that are dying.. so the herxing isn't as bad as some other protocols and that means less stress on your organs.

The vitamin D issue. Wow. Dr. Marshall took a lot of heat for his research, etc. on vitamin D. I can just tell you that an Endocrinologist and a Naturopathic physician told me about the MP. Everyone agress that vitamin D is a seco-steriod hormone and it plays a role in people with chronic illnesses, but nobody understands what that role is. Dr. Marshall's research is relatively new and very controversial. I agree with Dr. Marshall on many issues because it all makes sense to me. I just listen to my body.... I notice that when I'm outside, I'm shielding myself away from the sun. So that tells me what I need to know. I'm currently avoiding vitamin D at this point.

Its funny because several years ago, I quit craving milk. This was before I had a diagnosis.  My personal opinion on this is to listen to your body.

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523927 tn?1257022304
You would agree though that the MP is probably doing something for its patients? The extreme herxing and staying out of the sun concerns me. I would like a cure but I would like to know what's not so extreme that is out there. The wife was fairly skeptical about the MP when I told her and I can't say that I blame her to some extent. I believe there's something behind it, but I'm not sure I'm ready to push my body there yet. In fact, my holistic doc wants me to avoid a lot of other avenues because he said kicking up too many toxins can hurt your body. I think one case he made was a patient of his was taking the herbal tinctures and then she went and used a fife machine. It was too much for her body and she ended up getting her appendix removed.

I haven't studied Jermigans yet, but it does claim to attack the bacteria? Any special restrictions with Jernigans that make everyday life difficult? Do you get your vitamin D tested like the MP?
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I agree with your wife. I think the MP should be a last resort because it requires long term medications and restrictions.  I did have my vitamin D levels tested (D and 1,25 hydroxy) before I started the MP and I was told that my vitamin D ratio was 2.23 --- a clear sign of Th1 inflammation. I was also told that 99.89% of the population would be expected to have a lower vitamin D 1,25 level. This was a clear sign of vitamin D dysregulation, due to intracellular bacteria. Before I started the MP, I had a low vitamin D level and osteopenia. I'm hoping once I finish Jernigans... my vitamin D will convert normally again and my osteopenia will be gone. (amazing things are happening with that protocol !)

There are no special restrictions with Dr. Jernigan's protocol. It is natural and I've had less herxing symptoms with it. I noticed my herxing symptoms are also easier to control. It does the same thing that the MP does. Dr. Jernigan had lyme disease himself and his formulas are killing numerous pathogens involved not only in lyme, but autoimmune diseases and CFS. I'll zip you some links and you can read everything and discuss with your physician.

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It sounds to me like you just need to rest!!! cutting down trees is not the way to go with EBV, or when recovering from EBV. I understand that you may not feel unwell all of the time, and don't feel unwell enough to be lying in bed all day but perhaps thats just what you need to do for a good few weeks!!!

I currently have EBV and have had it for at least the last month. I had very unusual symptoms where doctors could not give me a diagnosis. This was even after spending 2 nights in one of London's top hospital St.Thomas'.

I've had all sorts of symptoms which change each week.. including pain in the backs of my eyes, a rash all over my body, stomach pain, muscle and joint ache, panic attacks, conjunctivitis, cold sores, very bad back ache and at one point kidney pain. After many many blood tests, 2 course of antibiotics, and ultrasound the doctor finally decided to test be for EBV.

I have been resting fully now for a week, and havn't developed any new symptoms. I feel much better, however the panic attacks are continuing.

I think sometimes its hard to tell yourself to stop! We all have busy lives, and plans, however its a time in your life that you just to sit back and realise your health is more important than anything else. The symptoms will probably only continue if you continue to keep trying to push through it.

Your immune system is probably very low too and anything that comes in your path you will probably catch!!

sounds like you have been through a terrible time and I hope things are sorting out for you. x
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650547 tn?1271776798
Hello, the advice you've given is right on target!  Unfortunately this topic is 3+ years old, but hopefully someone will find it useful anyway!  Regarding your panic attacks, have you taken any steps toward resolving those?  I'm just asking because I hadn't had panic attacks until I got very sick from EBV; and now, even though I'm over the EBV (thankfully), I've still had to deal with the panic attacks and general anxiety.  But that's something you can defeat as well!  If you ever have any questions, feel free to check out the Anxiety forum, as there's a wealth of information there on that topic.  Above all, I hope you get well soon!
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Have been reading this forum for the first time, and most of the posts are very old, but I've had all the symptoms that have been discussed here, and won't go into my life story, but I am 61 and have suffered from chronic fatigue and pain for yrs. I did have the EBV tests which I could not read, but from what I could understand they looked high, and my primary at the time also agreed and wanted me to go to an infectious disease ctr. but just never made it, probably money issues.Then another doctor just blew off the tests and said most people have had mono, and those tests were just that way because it showed I had had it, but the levels were way high. Does anybody here know how to read those tests? I am very familar with reading lab tests, but this one I just couldn't make out. I have had severe fatigues just like coming down with something, nobody took it serious, but mornings were the worse. I kept insisting it could be thyroid, which my tsh levels were just on the cusp of being high and I could not get treatment for it, finally my T4 was low and I was treated with a low dose of synthyroid, definitely helped. I also use to have severe panic attacks, but treating the thyroid has helped, have not been having them, and I use to wake up in the morning almost paralized, and would start dry heaving and could not stop. Thyroid can cause a lot of problems, and doctors fail to treat it if it is subclinical. Anyway, that did help me, but I also have severe pain issues and neuropathy, Raynauds syndrome, numbness tingling in all left fingers. I have given up on a real treatment, I do eat well. But, I've also been researching connection to some of the symptoms with RH Negative blood issues and incompatibility, just something to throw in here to muddy the waters. But, now I just take my pain meds, and Vyvanse which is a timed released stimulant and that gives me a tolerable life. I've tried the holistic approach, that did nothing, but glad it is helping you guys. I will say this, over the yrs whenever I had to take an antibiotic, had several pelvic infections and such, but I would have this renewed energy, amazingly, every time, so I don't know. But, I do know this other people don't understand the misery of this. I am 61, and most people think I am in my 40's partly because I have excercised and eaten well, and excercised usually came with a price, had to be very careful not to overdo when I had a few good days, but the point I am trying to make here is that you look ok, so people don't get it, neither do I. Good luck to all.
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lyme.
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lyme.
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i HAVE SUFFERED FROM INTERMITTENT BOUTS WITH REACTIVATION OF CFS.  EVEN AFTER MY TITERS WENT DOWN I HAD ABUT A 6 TO 9 MONTH RECOVERY PERIOD.  THE ANTI ANXIETY MEDS DO HELP YOU GET THROUGH...IT DOESN'T MEAN ITS IN YOUR HEAD.  ALTHOUGH I HAVE FOUND IT IS DIFFICULT TO GET ANY DOCTOR TO PAY ATTENTION TO ANY OF THIS.  WHAT HAS WORKED FOR ME IS TO BE GOOD TO YOUR BODY.  SLEEP EXTENSIVELY WHEN NEEDED.  TAKE VITAMINS AND PROBIOTICS BROUGHT IN THE REFRIGERATOR SECTION AT YOU LOCAL VITAMIN STORE.  THEY COME ALSO WITH VITAMIN WITHIN THEM.  SLEEP AS MUCH AS POSSIBLE AND EAT AS HEALTHY AS POSSIBLE...YOU WILL NOT FEEL BETTER OVER NIGHT.  B12 SHOTS ARE ALSO GREAT(TAKING ORAL B12 IS NOT THE SAME YOUR BODY ADSORBS MUCH LESS)  MY AVERAGE RECOVERY WAS ABOUT 9 MONTHS.  THIS IS WHAT HELPED ME...NOT A DOCTOR BE ANY MEANS BUT I KNOW THE DESPERATION YOU FEEL.  YOU JUST WANT TO FEEL BETTER AND EVERY DOCTOR YOU SEE OFFERS LITTLE HELP. XANAX OR LIBRAX DO HELP ME GET A BETTER QUALITY OF SLEEP.  TRUST ME I HAVE BEEN THROUGH THIS 4 TIMES...DEFINATELY NOT A FUN ROAD.  HOPE THIS HELPS...I DID EVENTUALLY FULLY RECOVER EACH TIME.    
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You sound like Me!did they check your 'VCA IGG'&other ebv titers? check your Lymphocytes&histiocytes,&Histiocytosis,your symtoms are like mine! I had a Great Immulogist&Ruemotoligist in 05 but they retired&seen 100 Drs since&hvnt had a DR that'll listen!I have severe burning&crushing bone pain-molted appearence,Rib& organ under rib,leg pain-,lung issues-adhesions&grounglass appearense,Mast cell disease,10 ruptred disc,Deg.joint&disc disease,swollen lymph nodes-removed&bx-3reactive lymph nodes w/sinus histiocytosis, Reynauds,severe neuropathy,fatigue, rashes,hives,etc,etc.I do have 'flares' that my symtoms get way worse-I get a fluid filled rash,chest pain,swollen gums/lose teeth/jaw pain,organ under rgt rib swells&hurts+worse fatigue i can barely walk!when rash subsides other symptoms do too-but are always severe.GOOGLE HISTIOCYTOSIS. I cant get a Dr in Ohio to listen with all these results!If U have biopcys or bloodwork you can try sending it to Dr McClain@Texas Childrens or M.D.Anderson in Texas. Good Luck! IF ANYONE KNOWS A DR IN OHIO PLEASE REPLY!
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I was never been diagnosed with EBV except when I was having all these symptoms in my 50 t's with chronic fatique  and a lot of the things discussed here. I will always remember when I was about 16 I came down with something that took me forever to recover. I had extremely swollen glands around my throat and severe sore throat, pain, and  everything else.  I was in such pain, things were rough at home, and back then out in the country, you just usually layed there until you either died or got well. When I was finally able to get out of bed and looked in the mirror, oh my God, I looked like death warmed over. But, I never went to the doctor, so I assume that is when I had Mono.  Finally, my Gyn tested in me when I was in my 50t's   because I kept complaining about  feeling bad and having these extreme fatigues, no sore throats or swollen glands. He did look at the test results and said that they  looked very high to him and he suggested for me to go to an infectious disease doctor, never got there. My question is, how do you read these results? I can usually understand most test results, but when my primary doctor saw this he just waved it off pretty much and said a lot of people have these kind of results, but he just took a glance at it, so I don't know what to believe, it probably doesn't matter now anyway at my age, but I would like to know. If anyone knows how I can find out how to read these things please let me know.
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Hi there. I have located an excellent bit of information about testing from an organization bearing the web address  labtestsonline.org. Hope you get the clarity you need in interpreting your results!
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Thanks a so much, will check it out.
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I read most of your story and when time permits will read it more carefully.  I'm a 63 year old male and developed basically all of your symptoms.  At first my doctors were dismissive.  I was sick for 8 months.  My symptoms began in December of 2011.  Night sweats were so bad I would soak 3 shirts and the sheets.  I could hardly get out of bed I was so fatigued.  Prior to all this I was playing Tennis 3 x per week.  I was misdiagnosed with every thing from arthritis to depression.  I had never been depressed until after six months of being ill.  I really thought I would never recover.  As was tested for everything under the sun.  My Epstein Barr  anti bodies were very high, but also had mono when younger.
      Now here's the amazing news.  I found a medical acupuncturist.  An MD who practices acupuncture.  He looked at my labs and confirmed what I had suspected, reactivated Epstein Barr.  He treated me with intense herbal supplementation and acupuncture 2 x per week.  The process boosted my immune system and I fully recovered.  It was a miracle for me.  My daughter is a nurse practitioner and aided with my recovery.  She spoke to my Doctor and said the man is a genius.  I live in Richmond, VA and would be glad to provide my doctor's info.
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can you please post md name?
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I am a 50 year old female. I learned 6 years ago that I was a carrier of EBV and that they dont know much about it and I should research it myself. I think that was a load of crap coming from a medical professional. Basically I have been dismissed by him and the endocrinologist I saw last year.
I have been to an endriconologist an have mild Postural Orthastatic Tachycardia.  I was also tested for Addison's Disease which came back inconclusive. They run tests with no consideration for EBV so they really must know nothing about it or just dont care.
This month alone my symptoms are through the roof and I am so frustrated. Chills, sweats, pain, everything I have read I have experienced. I am to see the doctor tomorrow because I have had a headache for 5 days and a ridiculous amount of urinating.
I wish I could find a doctor who cared or at least one who can refer me to a more concerned specialist. Sending someone to the Internet to research diseases on their own is irresponsible and very scary for the patient.
case in point, I learned today that EBV carriers are candidates for Hodgkin's Lymphoma. These findings just contribute to stress and more unrest. I need help and some medical compassion.
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My symptoms are similar to yours.  Heart palpitations, extreme fatigue, anxiety, low stress tolerance, body aches, headache etc.  I have many more symptoms but won't go on and on.  I only found relief when I saw a naturopathic doctor. She ordered the correct blood tests on the first vist only after seeing about 5-6 M.D.'s with no relief.  The blood test revealed a reactivation of EBV.  A naturpathic doctor in your area might help!  good luck!
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My symptoms are similar to yours.  Heart palpitations, extreme fatigue, anxiety, low stress tolerance, body aches, headache etc.  I have many more symptoms but won't go on and on.  I only found relief when I saw a naturopathic doctor. She ordered the correct blood tests on the first vist only after seeing about 5-6 M.D.'s with no relief.  The blood test revealed a reactivation of EBV.  A naturpathic doctor in your area might help!  good luck!
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I really sympathize with you so much. My test looked like I was re-actived also a long ago, never went to an infectious disease doctor but I just had a
really bad spell of pain all over, like lightning striking me all over burning like I was laying in a bed of coals, it was horrible!! It lasted about 3 wks. But, your symptoms sound like POTS which I think you mentioned and I've always had symptoms of Addisons myself, and having been researching my problems for yrs and finally settled on Ehlers-Danlos, or hypermobile joint syndrome, but POTs is one of the things that can go along with it, and I also think having both of these conditions it sets you up for these attacks one sets the other off or whatever, the chicken or the egg. But you should check out Dr.  Dianna on you tube, her speaking POTs, mast cell, EDS. web site prettyill.com,  or .org.Anyway, am rushing no telling how this is written so bare with me.
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I live in windsor, Ontario, Canada.  I have a 17 year old son that has been sick since December 2011.  After almost a year of making trips to our family doctor! many test, scans, (I had to request) a trip to see a specialist in Texas etc.  In December of 2012 he was diagnosed with EBV and CMV.  He has been under the care of a naturopath and a doctor of internal medicine.  He was recently been put on a treatment of prednisone (6 week treatment) to try to suppress his immune system because it is attacking his body.  (He has a lesion on his brain that is post viral). He is halfway through his medication and last Saturday seemed to be getting better, Thursday he started with the headaches coming back (not as severe) and today he has pain in around his liver area.  I really don't know where to go next.  My son has always been healthy.
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I live in windsor, Ontario, Canada.  I have a 17 year old son that has been sick since December 2011.  After almost a year of making trips to our family doctor! many test, scans, (I had to request) a trip to see a specialist in Texas etc.  In December of 2012 he was diagnosed with EBV and CMV.  He has been under the care of a naturopath and a doctor of internal medicine.  He was recently been put on a treatment of prednisone (6 week treatment) to try to suppress his immune system because it is attacking his body.  (He has a lesion on his brain that is post viral). He is halfway through his medication and last Saturday seemed to be getting better, Thursday he started with the headaches coming back (not as severe) and today he has pain in around his liver area.  I really don't know where to go next.  My son has always been healthy.
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I  am in NH.  After close to 15 years of unexplained immune disorders, including temporary loss of my eyesight, mono at 35, clinical diagnosis of Lyme and 2 years of treatment for Lyme - I am now told that I have EBV with CFS.  Of all the symptoms, the crushing fatigue is by far the worst and has had the most impact with trying to function at work and home.  After years of antibiotics for Lyme, and antidepressants for being told this was all in my head, it is now suggested that I start on Ritalin or Concerta to offset the fatigue.  Has anyone had luck going in that direction?  I can't believe how conflicting the internet is when searching for info on EBV and CFS.  The Dr told me blood test was indicative- Mayo clinic says there is no blood test.  I am so tired and don't know where to turn. The days I feel "normal" I can count on one hand a year.   Do the symptoms ever go away for good or is this just something I have to accept as my new normal?  Any reliable resources for me to study would be appreciated.  
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I've had the same symptoms as you man and more. I was diagnosed with EBV in the February of 2012 and this thing has took it's toll on me ever since. I had these crazy symptoms then all the up to August where it subsided. At the beginning of Dec. these symptoms came back a little stronger this time. And it's been going on ever since. More symptoms like pain in clavicles, and numbness/pain in armpits. Was wonder if you ott70 or anyone else experienced these two symptoms..
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I have had those debilitating fatigues, and it is like being in a fog, and it is not like normal tiredness, indescribible, and yes when you are trying to work and have a fast pace job, just horrible. It eventually passes, and I just wake up one morning and it is gone. And, most of the doctors don't take it serious, as soon as I mentioned it they said that just shows that you've had it before, but they didn't even look at it.But, my GYN did do the test and and said it definitely looked like I was having a reoccuring EBV and suggested I go to an infection disease specialist, but never got around to it, so have never found out. Guess I've said all this before (forget) anyway I do take Vyvanse which is a timed release stimulant, which I think is actually a new version of Atterall (sp?)which is timed released, and it definitely helps, there is also Provigil another drug they say helps. Vyvanse and Provigil is expensive but my insurance does pay pretty good and I get a coupon which makes it about $30.00, worth every penny. I also take Synthyroid, for hypo thyroid. I spent yrs trying to find out what these spells were, still don't know  for sure, but haven't had a serious attack in a while, and it is usually after extra busy times, or stress. But, I don't work anymore and that helps. Good luck everybody, and maybe this is wrong but after being left out of every fun occasion because of this, I BELIEVE IN MEDICATION, now can have a life.
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Hey I seen that you also have had reactivated EBV. I see you mention body aches and more symptoms. Do you care about sharing some or all of your symptoms? I also have a platoon of symptoms and haven't hear of anyone with a few of the symptoms I have.
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Hi. I'm just stumbling across this site. I'm floored by everything, everyone is saying. I was diagnosed in May 2004. Both my spleen and liver are enlarged, I'm curious, what to do?! Any help, suggestions, I'm thankful for. I've never heard of CFS,but I didn't completely fail a sleep study, I woke up nearly 300 times, despite, only remembering a few times. Thanks. I know it's been years since the last posting. My hematologist discovered everything, as a heads up. Its a blood problem. Great place to start, if y'all haven't already been.
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Well. Clearly not years, lol, gotta love smartphones
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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
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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
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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
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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
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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.
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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.
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I have had Epstein Barr for many many years in combination with an H. Pylori infection.  This combination has been shown in at least one study to cause severe gastritis.  That was definitely the case with me.  Also, I experienced what I thought was lyme disease like symptoms, similar to the ones referred to in the above comments.  This included joint pains, severe back pain that recurred for no particular reason, debilitating brain fog and lethargy, hemorrhoids, eye issues, strange white patches on my tongue, sleep problems, etc.  

A device called the "doug coil", uses resonant frequencies to destroy this pathogen.  It is very simple in construction and because it is open source, plans can be found on the internet very easily.  To be concise, it is a stereo amplifier which drives a homemade coil of wire to produce an alternating magnetic field.  A bank of capacitors is used to tune the coil and a computer can be used to feed the frequency to the stereo which drives the coil.

I built one of these devices myself from parts purchased on ebay for about $400.  It was worth every penny.  I originally thought I had Lyme disease, and noticed how many glowing reviews the device had in the lyme forums.  Many people said that it gave them their lives back.  I fully agree with this assessment.  I was literally at the end of my rope hoping I would just die of this nonsense and be done with it.  

There are a couple of videos on youtube which demonstrate what properly tuned magnetic fields do to microorganisms (it is sometimes called "rife" therapy also).  They will spin and sometimes spontaneously explode.  Unfortunately, it took me almost a year of experimenting to find the frequencies that benefited me the most.  This is not a blanket therapy, but when it works well, it works very wonderfully.  I have my energy back, I can actually function again.  It has helped with my eye issues and joint pains.  I am definitely pleased with the results.  I can resolve any back pain that comes on in 1-2 days instead of weeks.

A guide called the "CAFL" can be located online which is a published list of frequencies that other people have had good luck with.  I highly recommend using this as a starting point.  Many of these frequencies do work as advertised.  I also had a 15 year festering staph infection that antibiotics could not eradicate.  1 month of treatment with high intensity magnetic therapy with some of the published CAFL frequencies stopped the infection and keeps it away.

Like I said, it's not a magic bullet, but it can definitely make you functional again and relieve lots of pain.  Persistent experimentation is key.  Keep a log book of frequencies used and reactions.  EBV is actually somewhat delicate, so when I found the correct frequency, I experienced a massive "die off" reaction.  This occurs when your immune system is overwhelmed by the sudden appearance of debris which was otherwise hidden to it.  Be prepared for EXTREME depression.  This bug is very psychologically manipulative.  But with continued treatment, you will be feeling MUCH MUCH better!  BTW, I've found that power output is very important.  The original inventor "doug" recommended 2000watts.  I have been using 600 watts, but I feel I could get better results with more.  I'm the happiest I've been in years and without spending thousands of dollars in poison medications or doctors bills.  Good luck to all of you!  :-)
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Firstly, I'm so glad I found this post! I contracted EBV (glandular fever) at age 6 (1990) and suffered chronic fatigue and swollen glands for months. I was undiagnosed for a long time as I was "too young" to get the kissing disease. I remember having numerous blood test and seeing numerous doctors. I have since been told by doctors here in my area that once you've had EBV, that's it, you don't get it again. My doctor didn't believe in flare ups or re-occurrences, but I believe I can recall at least 5 significant flare-ups in my life and am currently experiencing one now. With two children, 3yrs and nearly 12 months, I am finding it extremely hard to re-build myself. I don't even know what to write due to the brain fog and the fatigue is unbearable. I'm seeing an acupuncturist tomorrow and am crossing my fingers that I get at least some relief (he has treated my mum who has Lyme disease very effectively)
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David, please send me dr info. I too live in RVA area.
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DITTO!!!!
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I have recently been told my EBV has reactivated.  I suffered with EBV/CFS 25 years ago but did recover very nicely.  I was treated by Dr. Susan Levine, in NYC.  She is wonderful, and is an expert in this field.  I will be going back to her to see if she can help me again.  The dr who tested me and said it has reactivated put me on antiviral Valtrex, and I feel worse.  My leg pain is awful along with my glands and now I've started to have gum pain.  Has anyone else had this?
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I also have high EBV and mono since Feb, 2016. I have been on Valacyclovir for two weeks, It seems to be helping. 1000mg 3 times a day.  
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I have been suffering from CFS/chronic mono for over two years.  It has been absolutely incapacitating at times.  At one point neurologists thought it may be MS.  Many doctors, many tests, all results negative.  Symptoms come and go, BUT there is hope.  One thing that was revealed about 4 months ago was very high titers for both EBV and HHV6 (herpes 6).  There is a known relationship between these two viruses and CFS.  Do an Internet search for Dr. Martin Lerner and also Dr. Jose Montoya.  They have had success treating this combo with antiviral meds.  Unfortunately, Dr. Lerner passed away back in October, but his treatment guidelines are still on his website and my doctor has been using it as a treatment reference.  I have been on Acyclovir for almost four months and I have seen a good deal of improvement.  I still have a ways to go, but there's no doubt the Acyclovir has been helping.  Do yourself a favor and get bloodwork for EBV, HHV6 and CMV titers.  If u find a combination of high viral titers, perhaps u may benefit from antiviral meds.  Good luck, it's a long miserable road.
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Has anyone on this thread had b-12 levels checked? Many of these symptoms plagued me for about three years. Finally I found Facebook support group Pernicious Anemia/B-12 Deficiency, had my b-12 tested, and it was the first test that came back normal. Turns out I have macrocytic anemia due to low b-12. I'm now on day 73 of self injecting hydroxocobalamin, taking 5600 mcg methyl folate, vit d3, K2, magnesium, and potassium-rich foods. I have my life back after spending Jan/Feb 2016 in bed.
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I had a severe case of mono over 25 years ago, and have never recovered. It left me with CFS and many other weird symptoms. This illness is brutal, and needs more research. I don't know if its the mono reactivating, or if the original illness did some sort of permanent damage to the body.
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Candy man what are your symptoms? How long do they last? Have u had flare ups? Are u still having trouble?
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