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.

[ott70]

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.

[ott70]

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?

[PlateletGal]

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.

[Padro46]

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.

[PlateletGal]

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 !

[ott70]

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.

[Padro46]

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?

[ott70]

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.

[PlateletGal]

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.

[regularjoey]

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.

[Padro46]

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.

[PlateletGal]

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.

[ott70]

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.

[regularjoey]

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.

[PlateletGal]

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.

[regularjoey]

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!

[PlateletGal]

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.  $$$$$$$$$$$$$

[ott70]

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.

[PlateletGal]

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.

[Padro46]

I am like you I dont know why they even test for it

[regularjoey]

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.

[PlateletGal]

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 ?

[Padro46]

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?

[ott70]

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.

[PlateletGal]

"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 !!!

[ott70]

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.

[Padro46]

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)

[PlateletGal]

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.

[ott70]

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.

[PlateletGal]

Check your inbox... I'm zapping you some information that was VERY helpful for me.

[Padro46]

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*

[PlateletGal]

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.)

[ott70]

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.

[PlateletGal]

= )))  --- 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.

[ott70]

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".

[Padro46]

Thanks for the info, will try the Jernigans when it comes in, hope it helps.

[PlateletGal]

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.

[Padro46]

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.

[ott70]

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.

[Padro46]

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

[ott70]

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?

[PlateletGal]

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.

[ott70]

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?

[PlateletGal]

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.

[kk01234]

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

[9DodgeFan]

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!

[thanksgiving]

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.