Elevated EBV-going on 3 months

[AllergyNerd]

I've been having strange symptoms since the middle of August.  I got really sick at first, all started with a sore throat, which I thought, oh another sinus issue is coming (I have allergies and take zyrtec every day).  A week later I felt like complete crap:  could barely get up to get a glass of water, super dizzy, lightheaded, diarrhea, etc...  I ended up going to the ER and everything was 'normal' except for the CT scan showed a cyst in my sinus cavity.  The dr. said it was nothing to worry about.    

I have a good friend who had had similar symptoms at the same time as I was having, but was across the continent.  She found out she had mono and told me I should also get tested.  My monospot test (or whatever the mono test is) came back negative, but 2 parts of my EBV test were elevated, I know one showed acute, so the Dr. said I had mono.  This gave me a ton of relief because I finally had an answer.  I am wondering if I could have gotten it from my friend because we had seen each other in May and I know we shared a drink (but I think that is longer than the incubation time period).  I also did a rotation in a skilled nursing facility this summer and so I was around various medical issues...

Towards the beginning of this all, after my horrible week, I had a week where I felt great and was biking, swimming, joined a gym etc... Then it came back again.  Was I pushing too hard and now my body is taking forever to heal?  A couple weeks ago I had 2 good days also.  

My main complaints/symptoms are dizziness/brain fog and fatigue.  I have also been very anxious and worrisome.  The more research I do, the more I worry and question everything.  I also think the ER visit was traumatic because now I find myself feeling lightheaded when I see blood etc... so weird because it never bothered me and I am in the medical field. I also notice every little thing on my body that I never noticed before... I don't know how much of what I'm feeling is anxiety?  I also have pretty bad tmj, so I am used to constant headaches etc...

This is all affecting my life so much and I find myself feeling depressed.  

I am a doctorate student and graduate in December, and I already have a job lined up, I have a great boyfriend, etc... so I do feel lucky, but I haven't been myself the past few months and am scared I'll be like this the rest of my life?  I'm in my last rotation in a local school system and I'm scared they think I'm making it all up and it's been a struggle to try to pretend like I feel okay.  Basically I go do my rotation and then come home and sit around and watch netflix etc...  When I'm working, I can't wait to come home and lay down.  

Is it all the EBV/mono and it is just taking me a loooong time to get over?  How do I not worry about lyme disease, cancer, etc...?  I have been drinking a ton of water and orange juice.  I also eat a little virgin coconut oil with honey every day and take a prenatal vitamin every night.  I don't know what else to do.  Any advice or insight?  Thanks so much for reading this, it would help to know I'm not alone.

[AllergyNerd]

Well, guess what!  I have lyme's...  Now onto the antibiotics.  I'm so glad I asked my dr. to test me for it.  

[ewford]

Take this for what it is....IF you are lucky enough to get in at the mayo, or Cleveland, or Yale hospitals, you think they will go to the Nth degree to find out what is wrong?  No.  Will they treat you with more than 4 weeks worth of ABX. No.  Will you be dissmissed as being an anxiety patient.  Yes.

  Lyme doctors who treat Lymes, various coinfections and Mycoplasmas do so knowing it might take years to rid the body of infection (or at least get it to the point that the immune system is strong enough to hold that infection in check).

  I have friends diaged with Gulf War Illness, went to Walter Reed Hospital, and have been painkillers and discharged.  And yet they knew they were still ill.  I gave them info and corraborating info about treatment and guess what.......they are getting better.

  Once again Sporque.  Why is it you troll these boards?  Is it to help people or to hinder their finding a cure?  Just asking.

[ewford]

You do, actually.   Around the world researchers are finding new species in the mix of bacteria found in sick patients.  Bartonella like objects.  But not Bartonella.  Babesia like objects.  But not Babesia.  Spheroblasts supposededly only found in China and showing up in the blood of ill patients.   you wanna follow Sporkers advice?  Then do so...but be prepared to live the rest of your life in pain.  I'm getting better.  Because I listened to Nobel winners.  Not people like Sporque.

[sporque]

You don't need a Lyme specialist to diagnose Lyme.  LLMDs have gotten in loads of trouble for medical malpractice relating to lyme..That's why you can't find any..There's not many left.  Please follow ewford's advice with little weight. Trust me. :)

[ewford]

  Allergynerd,  I hate to use Youtube as a link, but the International Lyme And Associated Disease Society had a 2011 conference in Canada and someone put videos on youtube.  PLEASE, search for 2011 ILADS Conference-Dr Horowitz -Updates on diagnosis and treatment.  There you will find him talking about Babesia and Bartonella species that they have never seen before and no tests had been developed for them, so people test neg on Bart and Babs.  Also that Mycoplasma Fermentans-Incognitus and Mycoplasma Genitalium (GULF WAR ILLNESS BACTERIA) is being found and transmitted as well.

  There is a video on youtube of a speaker doing a talk on Mycoplasma Genitalium called THE LITTLE PATHOGEN THAT COULD/ queen anne science cafe about this bacteria that has surpassed Chlamydia as a STD and Dr's have no clue because you test neg for it on standard STD tests, but it affects you systemically.  How about that?????

[AllergyNerd]

I went back to the dr. and she did more blood tests.  She is having a lyme test done, thyroid, ANA, liver enzymes etc...  Curious for the results.  I looked on the lyme site you mentioned and tried to find one around me, but there are none.  I'm still up and down.  I have talked with others who have had long bouts of ebv/mono, so I am still thinking that's what it is.  I haven't been able to fully take it easy since this is my last rotation in my doctorate program.  I have two more days left and then I'll have a couple weeks to fully rest.  We'll see...