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.

[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.