Reactivated EBV results

[ott70]

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

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

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

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

[misha50199]

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.    

[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.

[crumbelina]

lyme.

[crumbelina]

lyme.

[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!

[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

[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.

[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?