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]

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.

[melmel67]

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!

[drsdonthelp]

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 :)

[ewford]

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.

[AllergyNerd]

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.

[ewford]

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.