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Reactivated EBV results
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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.
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523927_tn?1257022304
So I have seen numerous doctors, as you can well imagine. It's at the point where my primary, the infectious disease doctor, and the neurologist are pretty much in agreement that I will need to ride out my EBV reactivation.

I'm okay with that if that's what it takes. I would like to think that with all of the testing I have done, that anything major would have been caught. I am thinking about getting one more opinion though.

I did also get checked for Lyme disease, but it was one of those inconclusive tests (PCR, I thnk) and the results were negative.

So far, what has seemed to help the most is a homeopathic doctor who prescribes me some herbal tinctures to help support my immune system and organs.

So some questions I have:
- For EBV-related issues, is an infectious disease doctor the best choice?
- For those who are also plagued by EBV, I assume that fatigue is not too uncommon? I had some large tree branches that I had to saw down to smaller lengths last night and it just seemed to wipe me out afterwards.
- Based on everything I have searched for, chest pain appears to be a symptom. I tend to get it in the center of the chest and more of a pinpoint pain. It's obviously not radiating and I have followed up with my primary about it who concludes its in the chest wall.
- EBV also appears to cause some organ pain? Mine will migrate around. For the last week or two, and it comes and goes, I would say my current back pain (possibly organ pain) would be the spleen area.
- How about uncomfortable sleeping? These last few nights have felt like someone beat me with a baseball bat. I tend to feel better as the day progresses, but getting up in the morning has been a little bit of a bear lately. I also seem to shift around a lot at night because my hips, and sometimes ribs, will ache.

I think I'm also leaning to some CFS I have perhaps developed, but none of my doctors have suggested such yet other than ruling out fibro.


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Oh, and I should add that the neuropathies that I have are considered small nerve. My neurologist just wants to see how I'm doing in a few months unless the numbness and tingling worsens. It comes and goes and seems to be a little worse towards the evening.

- So does EBV or CFS create neuropathies?
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Welcome aboard !! I'm so glad that you found this community, as most of us here can relate to what you are going through.

I'm going to try to answer your questions one by one.


- For EBV-related issues, is an infectious disease doctor the best choice?

Not necessarily. I've found that there is no specialist for CFS and many specialists don't want to deal with CFS patients because we take too much of their time. My Endocrinologist, who is awesome, told me that. He can only handle so many CFS patients because we are so complicated and have multiple issues. And then we still have to deal with those physicians <>, that have refused to read the literature on CFS because they already judged this illness because of its name (my opinion).

I highly recommend googling "Co-Cure's Good Doctor List" and searching for a physician who knows about CFS in your area. I also have that link on my website.... just read my entire profile and the website address is listed.

- For those who are also plagued by EBV, I assume that fatigue is not too uncommon? I had some large tree branches that I had to saw down to smaller lengths last night and it just seemed to wipe me out afterwards.

CFS patients have unrefreshing sleep... some CFS patients have trouble sleeping at all and others will want to sleep for many hours. Fatigue is our # 1 symptom.

- Based on everything I have searched for, chest pain appears to be a symptom. I tend to get it in the center of the chest and more of a pinpoint pain. It's obviously not radiating and I have followed up with my primary about it who concludes its in the chest wall.

Yes... chest pain and shortness of breath are seen in many CFS patients.

- EBV also appears to cause some organ pain? Mine will migrate around. For the last week or two, and it comes and goes, I would say my current back pain (possibly organ pain) would be the spleen area.

I've never had the organ pain. I have had back pain before. If you are having pain in your spleen area, I would suggest telling your physician and asking him/her whether or not you should have a CT scan done. I know that the spleen is often enlarged in patients who have mono.

- How about uncomfortable sleeping? These last few nights have felt like someone beat me with a baseball bat. I tend to feel better as the day progresses, but getting up in the morning has been a little bit of a bear lately. I also seem to shift around a lot at night because my hips, and sometimes ribs, will ache.

Yep... all too common in CFS. There is a physician (Ken Friedman, Ph.D) whose daughter was attending college. She had mono like symptoms and unfortunately, the health clinic on campus blew her off.  Her father was furious when he found out that she had EBV and then CFS. He said, "that the damage had been done".

Some CFS patients will fail the sleep study test. Dr. Friedman's daughter was waking up over 200 times every night. This was probably due to her pain...  but can you imagine ??

- So does EBV or CFS create neuropathies?

You bet they can. I often have tingling in my feet & in my hands. CFS patients also can have tingling due to an intolerance to gluten. We seem to do much better on a gluten free diet and without alcoholic beverages.




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Your story and mine could almost be the same with the exception of mine started in Dec07, have had alot of the same testing to include colonscopy,  EBV is one of those problems as plateLetgal said is hard to get help on,  still dealing with it but you are not ALONE.
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You are definitely among friends here and I hope that you will continue to post. There are treatments for chronic EBV and CFS. I've read from the experts that the sooner that you are treated, the better.

It bothers me that so many physicians are diagnosing people with EBV, chronic EBV and CFS but NOT treating them !
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523927_tn?1257022304
Thanks for the kind responses. I've posted here a couple of times in the MS and Undiagnosed Symptoms section and it was suggested to check out Lyme disease. I've had a lot of Lyme-like symptoms, but I'm not quite to the point of paying for the iGeneX tests yet. I would at least like to have one physician start to delve a little deeper into my symptoms and agree that I have something going on. At least I've had 3 or 4 of the docs agree that my EBV reactivated.

Platelet Gal, I've lurked on these boards long enough to say you always have great insight and suggestions (perhaps, answers! -- but I won't hold you to it). I appreciate the doctor link and have found a doctor that is less than 20 minutes away who is covered under my insurance plan (yeah!). Thank you.

The organ pain is an assumption on my part. It very well could be my back or muscles. The pain can be a little sharp and focused sometimes, so that's why I kind of lean towards some organ pain. My homeopathic doctor has suggested as such when he tests may body's electrical impulses and usually he's dead-on with what he prescribes in clearing up the pain (herbal tinctures). I have had my innards CT-scanned with no significant findings and the pain will migrate and then just go away sometimes for days.

Obviously, when you have so many symptoms going on, you start to worry about cancers or bad diseases. However, I've read enough in the last few months to open my eyes to all of these chronic viruses and conditions that plague people.
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were u like me and had no medical issues prior to this EBV, I did not even know what it was prior to Jan of this year,  My primary has all but given up on me.  Going to see a ENT doc in 2-months have you been that route yet?
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Yep, I have seen an ENT. Nice fellow and one of those old-school doctors who seems to care about you. I went to high school with his daughter also. He was the first one to comment on my EBV results. My PCP had told me my results came back normal previously. Afterwards, the ENT doc takes a look at my recent tests and made a comment of, "Looks like you had mono recently". Ummm, actually not that I can recall. So he was the first to clue me into something popping up on my tests. He ended up doing what he could for me by checking out my thyroid with an ultrasound and extra blood tests. Everything normal. Being a specialist, he said that was about all he could do for me and everything looked okay to him.
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Thank you for the compliment. I am happy to hear that you are seeing a physician who knows about EBV & CFS. Since your symptoms started in February... they may be able to treat you now and hopefully you can make a fully recovery. If not... there are treatments out there and few of them are set out to cure CFS. I'm on one of those treatments. There are no magic pills... it takes time to heal.

And just so you are aware, there are tests that CFS patients (EBV symptoms for 6 or more months) are failing. One test that all CFS patients are failing is the Holter Monitor heart test. Patients with CFS show repetitively flat to inverted T waves alternating with normal T waves... this is not a normal result and apparently, something only seen in CFS patients.



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Perhaps you can figure out what's going on by tracing back to what has led to the onset of your illness.  This could be an adverse reaction to something.  Are you taking any medication?  Were you taking any medication (like antibiotics) in the months preceding your illness?  Also, EBV is primarily spread by saliva.  Did you have any new sex partners in the beginning of the year?  I wish you all the best, hope you feel better soon.
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My Ifectious Disease Doc called and advised today there is nothing more she can do for me, so the ENT is my last call.  They must really keep a busy office 4 of them and my appointment is still 2 mos away.  As you were told by your Doc Ott70,  Looks like riding it out and taking supplements and trying to find Docs that will help are the only avenues to take on this thing.
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I went through the same thing. I think I've mentioned before that Co-Cure.org has a "Good Doctor List" where many CFS & fibro patients have listed their physician because they were satisfied with him/her.

But you also have some possible treatments and other physicians on the internet who can help you a great deal ( in my opinion, but of course ! ). I've made significant progress and my Endocrinologist was the one who told me about the treatment protocol that I was on.

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The only trigger I can recall is what I perceived as a heart problem one day. My heart skipped a beat, I thought to myself "Boy, that's odd", and then went weak and flushed in the face and thought I was going to drop to the floor. That's when it all started. Fortunately, my extensive cardio work-up came back all good. Unfortunately, I'm on 5 months of migrating mystery symptoms.

Chronic EBV seems to get thrown into the same boat as chronic Lyme. At least there's an EBV test that gives some values of what the virus is doing in your system. Now, if I can find a doc that believes enough in it. I do have an appointment now with a doctor listed on Co-Cure at the end of August.
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The good news is that it sounds like you've had a thorough check-up and there's nothing life-threatening going on.  As far as EBV goes - I don't really know of the treatments that PlateletGal is mentioning.  From what I know, the only thing that works is maintenance: plenty of rest, lots of fluids, healthy food, avoiding stress, vitamins etc.  Things should improve with time.
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Hi Joey,

There are various treatments for EBV and/or CFS. I list many of them on my website (you can find my website address in my profile). I started the MSN group website because I knew that there were other frustrated patients like me who were getting the run-around.

The treatment I was on was using low-dose antibiotics to kill the pathogens (mycoplasmas, etc) that supposedly are the cause of my immune dysfunction and are responsible for my symptoms. I recently switched to a natural treatment that is doing the same thing. I'm having herxing (similiar to detoxing) symptoms, so that tells me that the treatment I'm on is working. I'm very happy with the progress that I've made so far, but I still have a ways to go.
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219662_tn?1223862160
Thanks, PlateletGal, I visited your website.  What I meant to say is that, to my knowledge, there is no well-proven treatment for EBV/mono, all of the treatments are experimental and there is no one approach that works for everyone.  Obviously, things are even less clear with CFIDS/Fibromyalgia, since both are unfortunately still poorly defined medical conditions with no real diagnostic tests and no known causes.  I am one of the people that believes that EBV and related viruses can cause serious chronic illness, but the fact remains that most people with EBV don't develop any symptoms, so it can't be that simple...  It seems to me that the holistic approach (like the one you are trying) and healthier lifestyle improves the immune function and enables people to keep the virus in check.  Hopefully, the researchers will be able to sort this out eventually.  All the best to you!
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Hi Joey,

I agree. I honestly wish we had more answers. It's a shame that funding for CFS was recently cut. What is also a shame is the CDC's scandal. I'm not sure if you heard about that, but I believe that is why the CDC tried to redeem themselves later with the "CFS Public Awareness Campaign". I think back to the time when I had mono... I was only 18 years old. I try to remember if I was stressed out then, but the only thing I could remember was that I had a full life. I was working and also attending school.

I was excited when I heard that geneticists had identified a biological basis for seven different subtypes of chronic fatigue syndrome. However... I'm wondering whether or not the pathogens are able to alter our DNA ? Do you remember in Erin Brockovich how the toxicologist had said that chromium 6 can alter DNA ? Why couldn't pathogens ?  I'm happy that many parent's are storing their babie's cord blood and maybe that will give researchers more answers in the future.

I hate to say this, but I believe the pharmaceutical companies are focusing too much on making drugs to treat CFS symptoms, but not treat the disease.  $$$$$$$$$$$$$
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523927_tn?1257022304
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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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.

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Avatar_m_tn
I am like you I dont know why they even test for it
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219662_tn?1223862160
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.

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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 ?
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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?
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523927_tn?1257022304
This is the first time that I have been aware of it. My titers from the EBV test suggest I contracted EBV a long time ago and now had a recurrence of it. My PCP actually told me my test was fine but then it was pointed out by the ENT I saw that I must have had mono recently (which I didn't -- haven't had a cold before this for at least two years).

Dizzy, not much. My holistic doctor has given me stuff to support the thyroid which is supposed to be the cause of dizzy spells. Sinuses have always been an issue to some degree, so I can't factor mine in as being an EBV symptom. Ringing in the ears, and sometimes some quick pressure, is a symptom that I have had.
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"Ringing in the ears, and sometimes some quick pressure, is a symptom that I have had."

I can tell you that tinnitus (ringing in the ears) is very common in CFS.

Let us know how that doctor's appointment goes and good luck !!!
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Thanks for the wish of luck. I have been looking at CFS/CFIDS as some possible cause of all of this. The one part that I'm not sure about is I don't get -- at least IMO -- real fatigued. I do have some spells of fatigue or malaise, but I have yet to be bedridden from it. Maybe it's possible to have a mild case or have a bunch of the other symptoms without the major fatigue.

The doc I see at the end of next month is supposedly an expert on chronic fatigue issues. It's a blessing that he's an MD under my current medical insurance. He's been in practice over 30 years, so should be an interesting visit.
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Avatar_m_tn
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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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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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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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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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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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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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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Avatar_f_tn
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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Avatar_f_tn
You sound like Me!did they check your 'VCA IGG'&other ebv titers? check your Lymphocytes&histiocytes,&Histiocytosis,your symtoms (symptoms) 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 (symptoms) 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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Avatar_f_tn
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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Avatar_m_tn
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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Avatar_f_tn
Thanks a so much, will check it out.
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Avatar_m_tn
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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Avatar_f_tn
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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Avatar_m_tn
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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Avatar_m_tn
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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Avatar_f_tn
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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Avatar_f_tn
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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Avatar_m_tn
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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Avatar_f_tn
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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Avatar_m_tn
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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