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Elevated EBV-going on 3 months

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.
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Avatar universal
Ewford,
Are you still available for questions?
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Avatar universal
I had EBV reactivation back in May and I think it's finally going back into being dormant.  I changed my diet (ate better and ate less junk / fast food), drank plenty of water, and started taking a general multivitamin.  I'm not 100% but a lot better than before...so there is hope.  Just focus on resting and taking care of your body to boost your immune system.  I will take another ebv test the end of this month; I hope it says its not reactivated.  
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14481939 tn?1434752753
Just curious if you ever got your EBV under control?  I have been dealing with this for 10 months and I'm looking for a solution.

Thanks - Damon
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Avatar universal
I have a reactivation of EBV with symptoms of heart palpitations, extreme fatigue, anxiety, low stress tolerance, body aches, headaches, head pressure etc.  I have many more symptoms but won't go on and on.  I only found relief when I saw a Naturopathic Doctor which is a N.D.  She ordered the correct blood tests (a Viral Panel) on the first visit which revealed a reactivation of EBV.  A Naturopathic Doctor in your area might help!  I had seen many M.D's, a cardiologist, General Practitioners, Psychiatrist, Therapist etc. After seeing about 5-6 M.D.'s over the course of about 1 year I still had no relief and the symptoms were getting progressively worse that I had to go on medical leave from my job.  Only after seeing a Naturopath did I start to see results of feeling better.  A Naturopathic Doctor in your area may provide the help needed! You can Google Naturopathic Doctor to find one in your area.  The Naturopathic Doctor has changed my life. I now feel like I have my life back or at least it's starting to come back.
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Avatar universal
Hey,
Seems you may be able to be a source for me. IDC if you are a DR. or not. Four years now I have been sick, misdiagnosed, mistreadted, and now MISS tell it like it is.

Four years ago, I had a dental filling done imroperly, yes a dental filling started a snowball thats a avalnche. Failed root canal, cyst improperly removed, with no antibiotics at the time. Then Avelox, shot of Rochephin, then 72 hrs later horrible fever and sickness, treated with collidial silver. I trusted the wrong Dr. now, 5 oral surgeries later, am in need of another one. Bone graft in the jawbone and being told I need a major jaw reconstruction. I will give the cliff notes version. Been through many specialties and have so many issues I'll tell you what I can remember.

Have had PICC lines and I.v meds. Envanz (emitriptin)? Vorcanazole, rocephin 14 days piggy back, EVERY class of oral antibiotics except Vincya. Also, I have a neighbor who is VERY ill worse than me cancer survivor. She rcv. Vincaymycin for supposed "endocardidtis" Both of us are being jerked around, pushed off, left for dead. WE HAVN'T DIED, THANK GOD I AM ON A Mission.

SO, currently I have diagnosed with and suffer from:

atypical Trigeminal nuralgia, Cronic EBV, Kidney Issues (recently) following a, VERY HIGH IGM level, amenima (that has come and gone,for myself and my friend) TMJ ( previous), damage to 5 cranial nerves, optic neuropathy, was told possible endocardidits, taccychardia, Celiac disease, had to have endometrial biopsy? a to why, shortness of breath, Unilateral edema, yes, been told its impossible foot and handswole up like a balloon, pain and swelling in lymphs, tingling and numbness in limbs, extreme fatigue, doccumented heptomegly of liver and spleen, um...sweilling of the face and neck, frequent puss like lesions in my throat( cultured not strep, bacterial and viral negative) dizzyness, falling out, damage to heart valves, many negative tests but no answers. I can NOT gain weight, night sweats, intermitten fevers, weight loss of over 30 lbs, with no sucess of weight gain regardless of nutition good and bad. Black eye ( on the side of my face that has issues) cronic sinuisitis, cysts on breast, ovaries( friend) kidney myself, abnormal high and low blood pressure., memory loss, loss peferal vision, demylenizaion of optic nerve, hemifascial spasms, memrory loss, loss of congative abaility, suspected stroke, small superficial blood clot, ect

Negatives:
HIV, Hep A B C, Major General Oncology, quite a few more.......NO DR CAN TELL ME WHATS UP?
May be more can not think well please anyone can you help?
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Avatar universal
It seems like this post talks about lyme. How is it transmitted? Could it spread easily in a househld? Parents to kids and vice versa? What are the msin symptoms and what kind of test is done to diagnose it?
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Avatar universal
Yeah, I am so glad that I advocated for the lyme testing, otherwise, I would probably go on forever thinking I had mono and get worse and worse... scary.
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650547 tn?1271773198
Lake32, have you been able to find any answers yet for your situation, from your testing?
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650547 tn?1271773198
Glad to hear you got an answer and can start working on getting better!  Also, sorry I haven't replied to your other post in so long, but I've been VERY busy lately!  Perhaps you won't want to listen to me now since I thought your problems were caused by EBV (which, in my defense, you did admit to having high results on your test), but to my knowledge, EBV and Lyme's are not related.  My guess is that you already had EBV, then you contracted Lyme's (although it could be the other way around... impossible to say now), and the 2 have been having a heyday ever since, at your expense!  I think the lesson to be learned here is that testing is very important in determining what someone is dealing with... and even then, you may test positive for more than 1 thing (as you did).  It's nearly impossible to make a diagnosis on symptoms alone, but everyone here is trying to do just that, based on our own experiences... that's actually the whole point of these forums!!  Again, glad to hear that you're making progress, and hopefully in the future you'll be able to help out someone who's in the same boat you've been in!  :-)
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Avatar universal
I am wondering now if elevated EBV numbers can be related to the lyme's and that I don't have mono?  My monospot was neg...
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Avatar universal
How is what transmitted?  EBV?
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Avatar universal
I passed via all of the interesting post. My question is that how is it transmitted?
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Avatar universal
I am wondering about what to do next?  I have found 3 LLMDs in the Kansas City area (3 hours from me), so I guess I will call them and try to make an appt, but what if they are super full and won't take me for a long time?  Do I try to convince my dr. to put me on higher doses of antibiotics and for a longer time?  What if after this cycle I am feeling better?  Do I believe that I am better?  I have gotten in touch with a couple friends of friends who had lyme's and they seemed to do the typical antibiotics cycle and were back to normal, so I am still hopeful.  I am nervous about taking boards and starting my job (start date right now is Feb 2nd).  I am trying to think positive.
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Avatar universal
Hello. I want to add that I too was set on the right path but I believe the Lord used ewford to set me in the right direction. When you get sick sore throat, swollen lymph nodes, nerves jumping and shaking, pain in joints and feeling hot and cold in your legs etc you freak out and especially when all the doctors out there can't help you or even want to listen to you. I started treatment with an LLMD about alittle more than a month ago and I know it's going to take time but I have that hope in the lord that he is going help me get better. So glad to hear that you got tested I know all of this is pricey but who can put a price on your health. I have heard from so many in a forum I am on that they get miles better but it does take time and I hope that you get better!
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Avatar universal
Hi, I am from the lyme forum, and I just wanted to say that I am so glad that you took ewford's advice. He is who helped me when I was searching for answers. My story is in my journal if you'd like to take a peak, but through all of my problems, I never got an answer, nor did I have a doc. that would listen to me.

Ewford was right on the money with everything he said to me. He gave me very well informed advice and I sought out a LLMD. I went there with all of my symptoms and dx's with a timeline, that very same day I was placed on doxy for 30 days to start. On the second month, I was on flagyl and zithromax for 30 days, The next 30 days I will be on zithromax and doxy.


LLMD's are out there, and they do listen. My doc. is from NY. I do have to travel for 3 1/2 hrs. but it is worth it!! I may not get better right away, but I am finally on the right path.

Good luck to you and come join us on the lyme forum, its a great place to be with very knowledgable people.

Pam :)
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Avatar universal
Mine's in DC.  one of the best.  He's a founder of ILADS , Dr Joseph Jemsek.   If you want to check out his page, it's under The Jemsek Specialty Clinic.  In my opinion, my health means everything.  So that is why I was so diligent to find answers and a reputable physician.   In my opinion, DO NOT use a Dr that utilizes the "Marshall Protocol".  You will never get well.

  On a side note:  Are you planning on being in the medical field?  I remember seeing you say "rotation" which means medical to me.  Remember to take ALL you have learned/will learn about this in your future profession to help others.  And also remember, some patients will do their homework when they are being ignored.
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Avatar universal
I want to find a lyme's dr. in my area, but am having no luck.  I'm in Lincoln NE and willing to travel.
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Avatar universal
Think I'm crazy now?    Here's the problem with that diag.  She will only give you 4 weeks of ABX and that in the majority of patients is not long enough.  You might need MONTHS.  Ask your doc if she is aware of the coinfections of Bartonella, Babesia, Ehrlichia, and Mycoplasmas.  If she does not....run...do not walk to a ILADS doctor who will treat you appropriately.

  What I have found in interviews (1 particular 13 yr old girl I'll use as an example)   Bullseye rash, given 4 weeks abx, told she was cured.   Now she is 19, Arthritis, Chronic Fatigue, Myalgias, Chronic headaches, IBS and a HYSTERECTOMY.    All the bacteria was not killed.  Too short of a treatment regime.  I see it all the time.

Please take my advice.  Sporque in my OPINION is incorrect.  And once again I have helped someone get a proper diag.  Let me know how it goes Nerd.
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Avatar universal
Well, guess what!  I have lyme's...  Now onto the antibiotics.  I'm so glad I asked my dr. to test me for it.  
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Avatar universal
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.
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Avatar universal
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.
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Avatar universal
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. :)
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Avatar universal
  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?????
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Avatar universal
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...
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