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Why do I have an submandibular enlarged lymphnode?

Hi, I've been having an enlarged lymphnode in my neck for about almost 2 years now. I've been to the doctor several test have been done with everything coming up “negative" for cancer, but the enlarged lymphnode is still there and it hurts from time to time.

First, on January 8th, 2018 the doctor did a SOFT TISSUE ULTRASOUND and it showed a Sonography right submandibular prominent node measuring 1.6 x 1 x 1.5 cm with prominent blood flow involving the entire lymphnode. The medulla of the lymphnode is effaced and the cortex is thickened, at list 5 mm thickness.

So in January 29th, 2028 he suggested a CT Neck Intravenous contrast for further evaluation. And that came with the next results:
Limphnodes: Prominent to borderline enlarged bilateral level 2 lymph nodes each meassuring 1.0 cm short axis. At the level of the hyoid bone, there is a enlarged right cervical lymph node associated with the carotid sheath measuring approximate 1.0 cm short axis. At the level of the right thyroid lobe there is a enlarged lymph node measuring 1.2 cm short axis. There is an enlarged right submandibular lymphnode measuring 1.1 cm short axis by 1.7 cm in AP dimension. The conclusion of this CT test is: Multifocal prominent to enlarged cervical lymph nodes, right greater than left. Largest lymph node is seen within the right submandibular region measures 1.1 x 1.7 cm in cross-section.

Given this results, the Dr. referred me in February 2018 to do a FINE NEEDLE BIOPSY of the right submandibular lymph node, level 1B.  The final diagnosis of this was: No metastatic epithelioid infiltrates, granulomata, or Reed-Sternberg-type cells seen. Current flow cytometric analysis performed and reported to show no flow immunophenotypic evidence for a lymphoproliferative disorder.

So after all of this the doctor told me there is not showing of cancer. Which is a positive results. Then in September 9th, 2018 the doctor proceeded to make lab work for some viruses and it came positive for the Epstein-Barr Virus IgM Antibody with 153.00 u/mL range. He also checked for Lyme Disease which came negative with <0.90 Index. And he also did the Thyroid Screen and it came negative with 0.717 mIU/L range.

Given all this tests and results, could it be the Epstein-Barr Virus that is causing the enlarged lymphnodes or could it be something else?
22 Responses
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1081992 tn?1389903637
COMMUNITY LEADER
Hey, ElFuete! It's good to see you!

Thanks for the update, it's great to know that all is still okay with you. I just reread your initial post again and it brought all the memory back :)  Yes, your doctors have been very thorough and have left nothing undone. You can relax.

It's early, but I'll still say: I hope you have a very, very Merry Christmas, my friend! Please feel free to write again at any time.
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
Sorry, I can't guess about the tongue - except that it's possibly from the immune system or else from some food or irritant that you have repeatedly.

Thanks, I like knowing that about the phrase 'El Fuete'. I will use that in a conversation one day :)   I even listened to an audio to make sure how it's pronounced. It apparently comes from the word 'whip'.
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1 Comments
Thanks!! And yes it does come from the word “whip”.

Will let you know whats going on if I find out when I go to the doctor.
1081992 tn?1389903637
COMMUNITY LEADER
There happen to be several posts on this forum right now about lymph nodes that don't go back down. If you care to take a look sometime out of curiosity.
Helpful - 0
1 Comments
Hi, never had a patchy looking tongue. I just thought that what I have was called Geographic Tongue but just found out is “fissured”. About the bumps, they dont have any liquid, pus nor blood. They dont hurt and they just look as if they were part of the tongue. Soft to the touch, but its weird.

About ElFueteDom, LOL, funny you ask. I am from Dominican Republic and a phrase to express being surprised or thats something is surreal to you is “El Fuete”. For example, a Dominican could say “ El fuete”, instead of saying “Oh my God” to something he sees or hear.  And “Dom” stands for “Dominican”.

Greetings!
1081992 tn?1389903637
COMMUNITY LEADER
Well... a fissured tongue has cracks and geographic tongue has patches. So I don't know what to make of the dentist's comment. Have the patches gone away?

"color bumps on the sides if my tongue"
It's possible that they are related to the geographic tongue. The immune system can do lots of strange things. Or maybe it's from the same virus that possibly caused the nodes to enlarge.

It certainly is noteworthy that the dentist doesn't recognize it --> so that means it is very unusual. I'd bring it up to any doc that you see in the future. The fact that it appeared on both sides at the same time argues a lot against it being any cancer, I'd think. Do they look like they might be filled with pus or with clear fluid or with blood?  Rough or smooth?

I'm glad to hear that the B12 is giving a benefit to you. Thanks for the update, it's nice to hear from you. I hope you have a good day, too.

Say, I've meant to ask: what does ElFueteDom mean?
Helpful - 0
1 Comments
Hey Mr Ken_PA, it has been a while since I have commented here. I just wanted to keep you up to date about the enlarged Lymph-node.

Remember I had a needle biopsy done early 2018 and results came back negative for cancer, well a new doctor referred me to another ENT and ge referred me recently, last month, for another Needle Aspiration Ultrasound Biopsy and it came out negative for cancer and Lymphoma back again. Then he also sent me to do a TB test just in case and it came out negative also. So, almost 3 years later, two biopsies done and enlarged lymphnode its still there but not cancerous, so taking it as it is and not worrying so much about it anymore.

Thanks!
1081992 tn?1389903637
COMMUNITY LEADER
A B12 supplement is a great idea if you're not getting much of animal products, even dairy. Sublingual B12 might be better absorbed than other types. There are also "methylated" types which might be best of all.

While immune dysfunction can cause reduced absorption of B12, I don't think that B12 deficiency can cause the node problem or the geographic tongue.


In diagnosing, it's always a good idea to start out your analyzing by asking yourself if there is one central problem which is causing everything. I'd always keep that approach in mind. Your central problem seems to be coming from the immune system.
Helpful - 0
2 Comments
Thanks I appreciate your advice. I will give a try to B12 and will let you know how it goes.
Hello Ken_Pa, I wanted to give you heads up about the B12 supplement I’ve been taking and the enlarged submandibular lymph node.

The B12 supplement has help me get away the tired feeling I had. It seems like its working just great!

The enlarged lymph node is still there. Has not increased nor decreased in sized. I was a the dentist recently and while they were observing my mouth they noticed some tongue looking color bumps on the sides if my tongue. They asked my for how long I’ve been having them, and as far as I remember for about 3 years. I noticed them because I did bite into it without noticing was it was then checked on the mirror and saw them. They don't hurt and don't bother me but the dentist did not like them. He wonders if they are related to the enlarged lymph node which I think started about the same time. What do you think about this? Have you heard anything about this condition? The dentist told me I don't have a Geographic tongue, that what I have is a fissured tongue. Thought to mention that to you since I had told you that I had a Geographic tongue.

Please advise and have a good day!
1081992 tn?1389903637
COMMUNITY LEADER
Yes, I'd asked about digestive system upset because that can cause a problem with absorbing B12.

(I assumed you would have mentioned if you were a vegan.)

As you probably know, besides accounting for macrocytic anemia, B12 deficiency can also cause peripheral neuropathy   --- which probably could explain the arm symptoms.
Helpful - 0
1 Comments
OK thanks and no I’m not a vegan  but I don’t eat  a lot of meat.  I might take some b12 supplements see how it goes.  Any other suggestions ?
1081992 tn?1389903637
COMMUNITY LEADER
I have to compliment you on your self-investigations. Most people just won't make the effort. You might also try just plain hot water.

There are immune cells called 'mast cells' which are known to get activated by heat. They can cause all kinds of mysterious problems, especially because they secrete many kinds of powerful inflammatory chemicals. That could be the link with the inflamed node. Mast cells line the whole food-processing tract, including the tongue. Biochemicals from there flow down through lymphatic vessels to lymph nodes in the neck. While lymph nodes usually get enlarged because of infections, in some cases there is no infection - there are only inflammatory chemicals involved.


Your high bilirubin might be because your red blood cells are getting destroyed at a faster rate than normal - which also is a cause of anemia. Your numbers are only slightly out of normal range, any doc probably won't be concerned. But still, it's wise to first assume that all your symptoms and blood tests have the same underlying cause.

Overly reactive mast cells often cause itching. Do you also get flushing of the skin? Or have allergies, or have upset digestion a lot?

Is there a history of odd symptoms or immune conditions in your family overall?

Helpful - 0
1 Comments
Thank you I appreciate your comments .  About the itching yes I do get some dry places and itching spots.  About odd  immune symptoms in my family no really. Do you think it will be related to b12 deficiency?
1081992 tn?1389903637
COMMUNITY LEADER
Take a look at this, ElFuete:
"In some cases, pain may occur or the lymph nodes under the lower jaw (submandibular lymph nodes) may become enlarged. In rare cases, pain or discomfort may be persistent."

https://rarediseases.org/rare-diseases/geographic-tongue/

At this point, it seems probable that in your case, the averages don't matter because you are not the average case. You can show that web page to your doc, because that site is 'authoritative' enough to be taken seriously.
Helpful - 0
2 Comments
Thanks Ken_PA, will do! :)
Hello Ken_PA, hope you're doing good!! I tried hot chocolate and it did the same thing on my tongue... I think its just because of the hot liquid that its causing the red spots on my tongue.

On another note, I forgot to mention that I had some lab work done last September and some of the results came “Low" and others "High". I don’t know if it has something to do with the Enlarged Lymphnode but here it goes...

Low White Blood Count: Result was 4.15 (10x3) Ref. Range is 4.5-11.0

Low Red Blood Count: Result was 4.51 (10x6) Ref. Range is 4.6-6.2

High Mean Corpuscular Volume: Result was 98.2fl. Ref. Range is 80.0-94.0

Low Lymphocytes #: Result was 0.89 (10x3) Ref. Range is 1.0-4.8

High Total Bilirubin: Result was 1.7mg/dL. Ref. Range is 0.2-1.3

High Uncojugated Bilirubin: Result was 1.5mg/dL. Ref Range is 0.1-1.

I would like to add that since a few months ago I've been feeling a little tired on my arms, hands and shoulders with some intermittent pain in my hands from time to time. In the last visit I had with the doctor, he told me I have some anemia but did not recommend anything. I know my mom suffers from anemia and that it runs in my family from my moms side.

What do you read out of this results and do you think it could be related to what I have mentioned or the enlarged lymphnode? You're help is appreciated!!
1081992 tn?1389903637
COMMUNITY LEADER
That's good thinking, ElFueteDom. Please let me know how that works out.

They say that geographic tongue is harmless, but it might be a good idea just to abandon coffee forever anyway. Since you do have the geographic reaction to it, maybe the immune system in other parts of your system are also reacting.  Maybe you have reactions to other foods, also.


Can you figure out a way to measure the node yourself and be able to tell if it's shrinking? This is an interesting experiment.
Helpful - 0
1 Comments
The Lymphnode feels a little smaller sometimes, but it has not grown more than it has been.
1081992 tn?1389903637
COMMUNITY LEADER
Good analyzing on your part :)

Yes, heat can activate certain immune cells and that can set off inflammation. Do you happen to have a bad time in hot weather generally? Do you flush/blush a lot?
Helpful - 0
2 Comments
I dont like hot weather but I can manage. I dont swet a lot on hot weather and dont feel unconfortable either even though I dont like it.
Hello Ken_Pa, I had the same reaction with Decaf the other day. I decided to hold off on coffeee at all for around two to three months and see what happens with the lymphnode.
1081992 tn?1389903637
COMMUNITY LEADER
Well, since Geographic tongue is a mystery condition involving inflammation, and the enlarged lymph node is also undergoing inflammation, then that's the connection I see. It's about having unusual immune system reactions in general.

It might be the caffeine, or maybe some other molecule in the coffee. If you test with decaf and still get the tongue reaction anyway, let me know.
Helpful - 0
1 Comments
Hello, I took Decaf and it did not have the tongue reaction. I was wondering if it would be because of hot liquid, but it did not have same results anyways. Im going to try regular coffee today and will let you know.
Avatar universal
Hey Ken_PA, hope you're doing good. Another thought, I few people have been telling me that coffee can also cause the lymph nodes to enlarge sometimes. I usually drink a 16oz cup of coffee (not decaf) everyday. I have what is considered a Geographic tongue and when I drink coffee I notice I get some small red spots in my tongue. Do you think the enlarged lymph node may have something to do with excess in caffeine?
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
Severe stress tends to weaken the immune system.

Btw, I was talking to someone just a week ago who said that they get cold sores a lot and taking lysine makes them go away. You can read a lot about that online, too. Lysine is said to be an anti viral, and cold sores are caused by a virus. Might be worth a try.
Helpful - 0
2 Comments
Great thanks!
Hey Ken_PA, hope you're doing good. Another thought, I few people have been telling me that coffee can also cause the lymph nodes to enlarge sometimes. I usually drink a 16oz cup of coffee (not decaf) everyday. I have what is considered a Geographic tongue and when I drink coffee I notice I get some small red spots in my tongue. Do you think the enlarged lymph node may have something to do with excess in caffeine?
1081992 tn?1389903637
COMMUNITY LEADER
Pressing on it a lot might aggravate things. There might otherwise be a pattern where the inflammation is worse in the morning.
Helpful - 0
1 Comments
Ok, something I forgot to mention is that I’ve under a lot of stress recently and since a long time ago I’ve always gotten cold sores inside my mouth regularly. Would these two factors have something to do with it?
1081992 tn?1389903637
COMMUNITY LEADER
Yes, the larynx pain probably has the same cause as everything else: inflammation which is probably due to the EBV.

In scientific investigation, there is the principle that it is most reasonable to assume for starters that the variety of odd things have the same cause. That's called the Law of Parsimony, and also called Occam's Razor or Lloyd Morgan's Canon - it's so important that there are three names for it.

You seem to be saying that it is higher up, not low on the throat as near the thyroid.
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1 Comments
Yes, it is higher up... like at this exact moment (11:34pm) it doesnt hurt when I move it or press on it on the same area I was telling you about, but from time to time it does. Weird!
1081992 tn?1389903637
COMMUNITY LEADER
Let me know what happens. I don't think that things should just be left alone, it's been two years and seems still active. There should be some kind of treatment to try.

Sometimes nodes can get filled with inactive scar tissue (fibrosis) and not go down, but your situation is different.
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1 Comments
Something I forgot to mention is that if I try to gently move my laringe with with fingers from side to side, it hurts on my right side. If I push a little with one finger also. The pain is mostly in the right side. It doesnt hurt if I dont move it. Anything to do with the node?
1081992 tn?1389903637
COMMUNITY LEADER
I think that every doc would know that there is an association between chronic EBV and eventual cancer.

Regarding your node(s), there is every reason to believe it is chronic (or frequently  reactivating) EBV causing it.

So I'd start by asking the doc over the internet, maybe the doc will go for that right away. If not, then you can assemble some evidence to take to the actual visit.

The doc might want to treat the EBV or else to try and kill off the proliferating lymphocytes (which is what was done in the case study that I'd cited above).
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1 Comments
Thanks a lot. I’ll keep these suggestions in mind and we’ll see what happens.
1081992 tn?1389903637
COMMUNITY LEADER
Will you be speaking to the doctor over the internet or in person at an appointment?
Helpful - 0
1 Comments
Either way is possible with my insurance, but maybe in person would be better.
1081992 tn?1389903637
COMMUNITY LEADER
Okay then, this newly added info means we can forget all about being IgG deficient. You are not one in a million after all  :)

That leaves the ordinary 'chronic active EBV'. I suspect that is what your doctor has diagnosed.

However, your case seems to be extra intense, since the node's medulla (center portion) is effaced (obliterated). Your system is not killing off the proliferating lymphocytes which are taking over the node.

You don't want that situation to continue as it is, because proliferating lymphocytes might turn into something much worse after many years.

For the next step, I would ask the doctor to have your existing biopsy sample be tested to confirm that the node is filled with lymphocytes that are infected with EBV. That would likely involve a test using 'PCR' to find virus RNA. Or has that been done already?
Helpful - 0
1 Comments
Thanks for your specific responds. No, the test using PCT to find virus RNA has not been done. What do you suggest? How do I come about explaining this to my PCP?
1081992 tn?1389903637
COMMUNITY LEADER
A small addition, though I don't want to make this even more complicated: it's usually T-cells that kill off virus infected cells.
Helpful - 0
1 Comments
Hi Ken_PA, according with the last lab in September the EBV IgG Antibody is 96.30 u/mL out of the range <18.00 u/mL. And the Epstein-Barr Nuclear Assoc AG IgG id 213.00 u/mL out of <18.00 u/mL.  According to the results is "Suggestive of a recent Epstein-Barr Infection".
1081992 tn?1389903637
COMMUNITY LEADER
Okay, there is no history of infection... but let's proceed anyway to look at EBV as the possible cause.

One odd thing is that in response to an infection, a person first develops IgM antibodies to fight it. Then after some days they develop IgG to continue the fight against the infection, and the IgG works even better. But you say that you have IgM present, but not IgG. That would ordinarily mean that the infection is very new, yet you have had this problem for 2 years.
(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3782265/  Table 2)

How to explain this? Well, it's possible that your system can't make IgG. That would be very rare. But then why don't you have a lot of infections? Maybe that's because what you have is even more rare: an EBV-specific IgG deficiency. So then you can fight all other infections but not EBV.


The EBV can infect lymphocytes and cause them to proliferate, sometimes this is benign and not-cancer.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4314582/
"EBV-driven B-cell lymphoproliferative disorders..."

A node can then have way too many lymphocytes inside, and that can efface the normal parts that should be inside a node, as in this case study:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3934580/
"The lymph node was effaced by paracortical expansion of small lymphocytes..."
Your sonogram shows effacement, which is what cancer does --- but also it can be from benign lymphoproliferation.

At the same time if you have an EBV specific IgG deficiency, then your system is not killing off the proliferating, infected lymphocytes as it should.

So while your sonogram *looks* as if the big node could be cancer, and also the nodes behave as if their might be spreading cancer, the biopsy pretty much rules out cancer. What I described above about EBV is rare, and a doc would maybe tend to discount that. But this does provide an alternative explanation for your nodes.

That's complicated, but it's possible. If it was an easy diagnosis, your doc would have found the diagnosis by now.

Please tell me what parts of all of that are confusing, if any, and I will try to explain that part more.


If you ponder this and agree that it seems possible, I can post about what to possibly do next.


Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
Hi, That's a very unusual situation. I have a guess as to the cause but first it's important to know: do you have a history of getting infections, or a family history of getting infections?
Helpful - 0
1 Comments
hi, no I dont have a history of infections, nor my family either.
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