Anyone with Lymph node enlargement +12 weeks with EBV?

[CJ1971]

After 5 months of weird and crazy symptoms which started with elevated liver enzymes(they thought gallbladder) and sore throat I was tested last week  for Mono and came back with very high EBV titer.  This according to my ENT is diagnostic of a recent mono infection. I also had a neck ultrasound that showed several posterior cervical lymph nodes swollen with the largest being 1.2 CM.  My question is have any of you that have had Mono had swollen lymph nodes for 12 weeks or more?????  I am very concerned that it is lymphoma and not mono at all but my ENT insists that I just sit and watch and we will recheck my lymph nodes again in 4 - 6 months.  This of course is easier said then done because I am a 36 year old Mom of 2 year old twins and panicked that I could have something much more severe since having mono at this point in my life seems strange to me.  Thoughts?

Thank you!!!

[PlateletGal]

Are your lymph nodes tender to the touch ? It does sound like you may have EBV. I know I often have swollen lymph nodes and a high WBC.

[CJ1971]

Nope, not tender to the touch.  I poke at them all the time which I know does not help. Just want them to go away so badly.  I just spoke with my ENT and she has scheduled me for an FNA in mid June.  She said now that I am aware it is best to proceed.  She said she will also check my blood again then.  She said she will take 3 samples with the FNA which makes me feel a little better that she will get a good sampling. Have you had a node biopsy?

[pvn]

I have had severly swollen lymph nodes up and down my neck for two years!  They did two FNS, could never seem to get enough sample to say for sure it was lymphoma, so they did a biopsy of one.

It came back negative.

My EBV test numbers are the highest my doctor has ever seen, they've continue dto be high for two years, my lymph nodes, although huge, are never tender.

The only relief I have received is from a LICENSED Lymphatic Drainage Therapy person. NOT a massage therapist!!!  He is a Physical Therpaist and we have finally gotten them reduced, after 7 months, to almost normal.

My doctor wants me to go to a Infectious Disease Doctor, but so many people in the yahoo EBV forum that have gone, said they felt like nothing more than a number in a research project. All they do is redo your EBV test, say yes you have EBV, then give you experimental drugs.

Others have suggested going to a Fatigute and Fibromyaligia center. Several went to Allergy/Asthma/Immunology specialists and received great help there.  

Almost all have ended up going back to their own doctor--someone they felt knew them and cared.

Hope all that helps.

I found the most important thing is to RELAX as much as possible, don't overdo anything and remain calm through all the up's and downs. When I do too much (deadheading roses for an hour on a hot day/driving for 3 hours without a break, spend two hours on the computer, etc), I get a flareup and my lymph nodes pop out again.

I focus on getting one to two things done a day and remaining relaxed with deep breathing into my neck and chest.

I am getting better...you will too!

Good luck!

[CJ1971]

Thank you so much for taking the time to give me some insight.  I really appreciate it.  I had my FNA on Friday, yes, the 13th ughh!!!  Anyway, I hope to learn something later this week.  My understanding is that FNA's only have about a 70% chance of getting me an answer which is a bit frustrating.  Anyway, fingers corssed I will get  good news, or some news and in the mean time I will take your advice and try to relax.


Again, thank you!!

[PlateletGal]

You know I think that Lymphatic Drainage Therapy is the only alternative medicine procedure that I haven't tried... LOL ! Although I do have a homeopathic remedy by NOVA called "lymphatic" that helps with inflammatory conditions, low immune system, toxins and swollen lymph nodes.

I have actually found that alternative medicine has worked better for me than conventional medicine has. I read a recent research study where they interviewed CFS patients and found the same results. I can understand why Mitt Romney's wife, who has MS, is treating her condition with alternative medicine instead of western medicine.

[pvn]

Hi again. What did you FNA show? How are you?  
I saw an ENR last week who said EBV lives in the lymphatic system...so no big suprise that some of us get swollen lymph nodes...yes, even for 2.5 years like me!  BTW, my lymph nodes are severely swollen, yet never hurt. Even if poking and prodding...so don't worry; not all lymph nodes hurt.  

[CJ1971]

HI!  My FNA came back benign in nature?  However, My ENT Dr. reiterated that FNA is not 100% and said  will ultrasound it again in September to make sure they are not chaning or growing. Also, we will redo BW. The lymph node following the FNA got really big but now is back to where it was before.  I was hoping the good poke with a needle would make it go away but no such luck.  The good news is I feel okay so fingers crossed it truly is benign.  It is a posterior cervical node and by a major nerve so she does no want to do a full biopsy unless absolutely necessary.

Thank you so much for checking back.  I really appreciate the boost.  I am trying to relax and some days it seems to be working.  

Thank you.

[pvn]

My IM doctor told me that since following my situation, he gives everyone who comes in with swollen lymph node(s) an EBV test...and ever one of them has high EBV numbers.  

My ENT said he KNOWS EBV lives in the lymphatic system...therefore, swollen lymph nodes.  

I have found that lymphatic drainage massage my LICENSED LDM really has helped.

I am now taking Anti-viral