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.
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'.
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.
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?
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.
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.
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?
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.
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.
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?
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.
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?
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.
Pressing on it a lot might aggravate things. There might otherwise be a pattern where the inflammation is worse in the morning.
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.
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.
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).
Will you be speaking to the doctor over the internet or in person at an appointment?
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?
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.
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.
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?