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.

[9DodgeFan]

Hi!  First of all, please stop researching online!  I know it's not easy to do (and ironically, it's probably how you found this site), but trust me, if you're having anxiety/worries, reading horror stories online is NOT what you need!  I know this from experience!  Your case sounds quite similar to mine... I'll try to shorten mine a bit:  Came down with what I thought was the flu in May of 2007.  Had a lot of stuff going on in my life at that time, so I tried to "tough it out".  Not sure if that made things worse, but after a few weeks of intense symptoms (by this time had been dx'ed w/mono, despite multiple negative monospot results), started to feel better.  Here's where a made a HUGE mistake... I had been exercising prior to getting sick.  Since I felt pretty much back to normal, I decided to pick up where I had left off.  I handled it fine, but within a week my symptoms came back, and this is where the extreme fatigue set in.  Not trying to scare you, but the fatigue for me was overwhelming and just would not go away.  I used up all my sick time (& vacation time!) at work and finally had to go on unpaid FMLA.  By around September I started working part-days again, and I was able to SLOWLY (*VERY IMPORTANT*) get back to full-time.  After work, all I could do was rest (Video games intead of Netflix for me, haha!), which it turns out was really the best thing I could have done.  In the end, what you need to do is get as much rest as possible.  If possible (and I know it's probably not), it would be great if you could take a month - even a week - and just put your whole life "on hold", just rest as much as you can.  I really wouldn't worry about lyme, etc., because it really does sound like mono/EBV, especially considering your test results.  So good luck; I hope you start feeling better soon!  And I hope I answered all your questions; if not, don't be afraid to ask any more!

[9DodgeFan]

Forgot to mention... it took me about a year until I felt like I should try working out again.  Of course by that point I was completely out of shape!  But I made sure I took things very slowly, and I feel like I've made some great gains... not back to where I was yet, but I'm just being extra cautious... you know what they say about being safe/sorry!!

[AllergyNerd]

hank you so much for your replies!  It makes me feel better.  I am unable to put things on hold now since I only have 3 weeks left of my rotation (I can't believe it!!!).  The good thing is that I have a week and a half off when I'm done before graduation activities (3 pretty intense days of things on campus),  which I don't know how I'll get through if I still feel like this.  My mom is flying in, my dad and stepmom, other family, my boyfriend's family is meeting my family for the first time (and I think there may be a proposal around that time...).  I don't know how I'm going to get through it all if I'm not better by then.  I need to figure out how to put the anxiety to rest I think.  I wonder if I should ask my dr. for xanax or something for a short term thing?
Anyways, I will have that week and a half off, graduate, then have basically a month and a half off before I start my job.  I have to wait for my college to get me my final transcripts, apply for my temp license, register for boards, all that fun stuff, BUT I will have a lot of time off.  I'm hoping that if I'm still sick, that time off will help heal me?  I just can't imagine starting a new job feeling like I do and getting through graduation, the holidays etc... but like I said, at least I will have no work to do for a while.
I've been worried this week that I have a heart problem.  I feel like such a hypochondriac!  The fatigue and light-headedness are scary sometimes.  
Yesterday I had this surge for maybe an hour where I almost felt my usual self and had this shot of energy/optimism.  Today not so much...  Did you find that you felt better slowly or was it a more sudden recovery?  Thanks again and sorry I write so much!

[ewford]

Chronic headaches, eye pain, hyper sensativity to sounds, overy emotional, IBS symptoms, neck cracks, stabbing sensations, neuropathy, ankles hurt, muscles and migrating joint pain, UTI like symptoms, felt like you got the worst flu then never recovered, sleep issues, feel like you are going to gag occasionally?

[ewford]

have days where you  feel "ok" but then have 1 or 2 days where you feel like total crapola, sugars and carbs make it worse, all your tests are normal, except your EBV?

do this...run a 24 hr ECG test.  Bet you will see you heart skipping beats occasionally.  

also, do a blood volume test.  Bet your red blood cells are down 30-60 % for your body weight.

[AllergyNerd]

Where are you going with this, ewford?

[ewford]

Im thinking mycoplasma or Lymes w/ bartonella and babesia coinfections.  If you have had poly cystic ovarian cancer or cysts / endometriosis  I'll put my money on it.

Mycoplasma Fermentans-Incognitus, Mycoplasma Penetrans, Mycoplasma Hominis or even Mycoplasma Genitalium

[AllergyNerd]

The only other health problems I've really had are sinus/allergy issues, tmj problems and anxiety/depression at times.  I've never had any ovarian issues.  Also, I have never been bitten by a tick to my knowledge.  The dr's I've been to said they didn't feel a lymes test was necessary, so I guess I'll trust them for now...

[AllergyNerd]

I also had an MRI, CT scan, chest xray, EKG, etc... and everything was 'normal'

[ewford]

These chronic intracellular bacterial infections suppress the immune system, cause any latent suppressed viruses to re-emerge, ie: HSV1, HSV2, Cytomegalovirus, EBV, Enteroviruses AND most importantly HHV6.  HHV6 has been implicated in MS and other autoimmune illnesses.  When the immune system is suppressed T4 killer cells cannot do their job correctly opening up the potential for cancers depending on your genetic make-up.  Also macrophages are dissabled and yeast infections can go out of control.  So, there is a possibility you have a chronic INTRACELLULAR bacterial infection (that will not show up on ANY labcorp or Quest test) coupled w/ reactivated viral infections and fungal infections.

[AllergyNerd]

So how can you be tested for intracellular bacterial infections and what are treatment options?  Do bacterial antibiotics not do anything either?  I'm hoping it's all just EPV/mono...

[ewford]

MRI , CT, chest, EKG will not show this infection.  It's in the white blood cells, you have to crack open the Leukocytes to find its genetic fingerprint.  Lymes and Mycoplasma patients show pretty much normal test results, nothing remarkable, one way or another.  but this bacteria creates chronic inflammation.

[ewford]

macrolides ie; mino, azithro, omnicef, doxy.    But for a long time.  could be months worth. standard ABX innefective as these bacterias lack a cell wall, hence Mycoplasmas or L shaped bacteria.  VERY slow growing, divides every 10-28 days

[AllergyNerd]

They did blood tests also, 2 separate times, so I'm going to try to just believe it's the EBV/mono and trust my dr.  I was just on doxy for a sinus issue.

[ewford]

pennicillins make this worse as you already could have the fungal infections.  Check out www  IMMED org and look under autoimmune or infectious disease.  This guy is a Nobel nominee cellular pathologist  that has written 3 world renown citation classics and 600 peer reviewed and accepted papers.  Hes a smart cookie.  he helped me figure out what was going on with me.  His name Is Prof Dr Garth Nicolson.  Did you know if you give people with ALS< MS< Lupus and other autoimmune illnesses , they get better?  An ALS patient in a wheelchair is a death sentence.  Give IV Rocephin and they will start walking again.  Fact.

  Mycoplasmas have been implicated in Lukemia and all autoimmune illnesses, but Dr's give you Cymbalta and bezodiazapam and tell you its all in your head.

[ewford]

Your blood tests will NOT show this.  It's INTRACELLULAR, thats why standard ABX will not work, you need the macrolides to catch tese things as they leave the cell.  Your fatigue issues are from the Cytokines being released into your bloodstream and the lipids exiting you cell membranes

[AllergyNerd]

why can it not just be mono?  I would think something would show up in the CBC or leukocytes?  

[ewford]

Mycoplasmas are communicable, ie mycoplasma Pnuemonia.  But these other mycos are more pathogenic., Your working in a hospital facility is a very good possibility for this being passed.  Some are aspirated . Also some mycos can be passed through intercourse via body fluids.  

[ewford]

the bacteria is in the white blood cell "crap' they toss after a centrifuge.  A babesia infection is inthe red blood cells, the CBC will show within range, but the malaria like flagella  will be consuming the RBC's.  It causes them to swell up and not pass through the capillaries properly,  They will be bloated and ridgid where they need to be maleable.   Think of it this way, if there is not an available test on hand for a bacteria(s) not commonly looked for, you will not find an infection.

  Also, get a IFA HHV6 test done to see if you have a high HHV6 titre.  Not a crappy labcorp/quest.

[ewford]

Labcorp uses an ELISA test, they are not definative.  Mine showed 14.7 titre when 1.6 is pos.

[ewford]

If your symptoms get worse, like fasticulations, neuropathy, hot and cold sensations on skin, just weird symptoms that don't seem cohesive there are only a few possibilities.  AIDS, HIV, Syphillis, Lymes or Mycoplasmas.  I would think your EBV would have subsided by now, but since it hasn't you need to be more cognizant for this possibility.

  If they get worse, contact me and I will tell you where to get treatment and proper testing.  If it is Lymes, your WB will show negative as the bacteria is pleomorphic and changes surface proteins continously.  Very rare you will actually test positive.

  Mycoplasma Fermentans Incognitus is a mutated Visna virus shell with a Brucella bacterium inserted.  Dont believe me?  Do some research.  i talked to 3 Nobel prize nominees and 1 winner while doing research.  i could practically write a dissertation.

[AllergyNerd]

Update- I am feeling a lot better in the last week or two.  My dizziness is basically gone and I am left with lethargy.  I still sleep quite a bit at night (10 hrs usually) and cannot expend too much energy, but otherwise I think I am on the road to recovery :)  Hopefully it lasts!

[sporque]

I wish i would of seen this thread sooner, or I would have told you where she was going.  She tells, anyone that visits here they have Lyme, AND need super expensive tests to find out definitively.  It's been the last scam per say since the documentary "under our skin"  which has been refuted by John Hopkins hosptal, Mayo clinic and many more..I could go on, but trust me when I say don't get sucked in.

[sporque]

lol..