Hi, let's start with your exact question, "does it seem like I should press for a biopsy or some kind of imaging of my lymph node or of my back or anything?"
I wouldn't want a biopsy at all, because that would only get in the way of finding the real cause. I think the real cause is very complicated but also is actually very identifiable here. But first let's discuss why it's very unlikely to be cancer.
"subsided about 2 months after first coming on"
"they all started at the same time (almost overnight)"
Cancerous nodes don't behave like that. Cancer doesn't grow super fast and then just decide to stop growing for months and months, or just go partly away.
"that grew overnight and has stayed hard, fixed, and swollen since April"
There are two reasons that a node can stay enlarged for an excessively long time, while still being not-cancer: (1) you're still having an immune reaction that keeps the inflammation going, and/or (2) some things have formed inside, that take a very long time to get chipped away, if ever. Those would be fibrosis (scar tissue) made by immune cells, and/or granulomas; both are made by immune cells.
"it might be useful in some cases to biopsy if the lymph node is under 1cm?"
Are yours rounded, rather than long ellipses? Do they keep growing? Other new ones still popping up? Those are bad signs.
That leads us to having a scan or not (which should be a sonogram rather than CT or MRI). If the sono shows a fatty hilum and normal 'architecture' and a shape where the length is at least 2x the width, then you can really believe it's not-cancer. Though if the reverse is true, that still doesn't mean that it is cancer, because severe inflammation can mimic those effects.
But I don't think that a sono is really called for at this point - because it seems very much more like immune system dysfunction. Not autoimmune, but auto-inflammatory and centering on mast cells with probably eosinophils thrown in also.
"I feel like for months and months the lymph node has been much bigger"
It's often hard to tell exactly without a scan because there can be associated swelling. When you say 9mm, do you mean the long dimension (called 'axis') or the short axis?
As a related issue...
"stage V TMJ derangement"
Are you long and thin? Hyperflexible and/or with very stretchy skin?
If so: EDS (Ehlers Danlos Syndrome) is a connective tissue disorder that can result in TMJ problems.
EDS is associated with mast cell disorders.
Did something occur right before the onset of all these problems? Like a very bad cold or an accident, and/or extreme stress?
"I think I may have gotten one in my groin area"
Generalized lymphadenopathy. That's a little worrying, though not necessarily cancer.
Did you travel anywhere that there would be unusual pathogens like parasites or bacteria or virus that a local doc wouldn't expect?
React very badly to bee stings? Many allergies, with you or family? Odd immune system disorders like Raynauds or Lupus, Sjogrens?
"have general malaise after working out"
It has a name: PEM. Post Exercise Malaise.
Some say that if they push it, they dig a much deeper hole. Others don't.
Well, ajacobs, I think we are 85% to am answer :) Just the details remain. Plus that little 'detail' of convincing your doctors.
I am very glad to be of help and this has been enjoyable... because it's going so well :)
That's not a brushoff, there are still those 'more details'. And please ask any questions that you have.
This is very important: do you flush spontaneously, without exercise or heat or any other trigger? Just out of the blue?
"I haven’t tested positive for the antibodies for any of those autoimmune disorders,"
Okay, good. Though keep in mind that this isn't autoimmune (which requires auto antibodies or t-cells). This is auto inflammatory, because mast cells go off too easily and too strongly.
Mast cells have many dozens of inputs (receptors) and hundreds of outputs (chemical mediators, such as histamine). They use those mediators to orchestrate other immune cells, even other MCs.
Btw, ~10% of normal people show ANA on tests but are completely healthy. It's not a simple thing.
"Yes, it is just random. Like sitting on my couch, walk into the bathroom and my face and chest is completely red!"
Okay, that opens the door for a firm diagnosis through blood tests. Not just by symptoms. Did you tell this to any doctor?
Mastocytosis means too many mast cells.
Do you get long term brown or red speckles on your skin? Almost like freckles. (Urticaria pigmentosa)
Can you draw a line on your sternum and it is pronounced and stays a while (dermographia)?
Now imagine a roughly similar thing happening from MCs in your GI tract. Pain, highly irritable, food sensitivities, no appetite.
In the lungs, something similar but with leukotrienes as mediators. Out of breath when passages constrict.
Yes, there is an established procedure for testing.
After you flush, you immediately get a serum tryptase level done. Before the perishable tryptase breaks down and is gone. It even gets sent in to a specialty lab on ice.
Or in urine, methyl histamine. Maybe a skin biopsy to count MCs. Maybe a genetic test for Kit mutation.
Don't get frightened when reading about systemic mastocytosis because I don't think you have that.
Treatment is mainly various antihistamines. They block the effect of histamine, like jamming a wrong key in a lock. Also mast cell stabilizers - some of which just come from plants and can work better than drugs - to keep the MCs from going off too easily and too powerfully.
Also identifying triggers (which is not necessarily easy) and eliminating them. It's management, not cure.
Sorry to say, it won't be a quick and easy thing. But far far better than going many many more months without help and even no answer.
"Does this fall in line with a Mastocytosis?"
Being inflammatory and reactive is consistent with all of this.
-----mastocystosis is too many MCs, which also are dysfunctional
-----MCAS is normal number of MCs, which are dysfunctional
Remember this well for the future: MCs don't show up in usual staining methods, so the pathologist HAS to be told by doc's order to look for MCs with special staining.
You are welcome!
Sorry, I have to go for now, so let's talk tomorrow about which doctor. It's best to get one who knows these things by experience with relevant patients, not just any immunologist etc. If possible.
You can find an intro youtube from Dr Afrin with '101' in the title. He's a famous MC doc. The venerable grandaddy of this topic is Dr. Theoharides. You are very sharp and will pick up these things quickly.
And please let me know how things go along the process. I would really like to know, if you don't mind.
"Is there a specific specialist that would run these tests or would it be fine for my primary care doctor to order them?"
Your pcp can and should do the screening tests. Are they open to suggestion, do you think? Or do we need to prepare an evidence based case to convince them? I believe you'll need an order that you can use to rush to get a blood draw immediately after a flushing attack.
Remember this well: I think the sample has to be sent in to a specialty lab ON ICE or it gets degraded.
Then the pcp has to know what to do with the test results.
I know that Theoharides has had a mastocytosis article published in a top journal, maybe BMJ or Lancet. That should convince any doc that this is not just some flighty thing.
There would also be a WHO classification for this. That's useful because it seems that no doc that you have seen so far is aware of mast cell diseases.
Organizations like TMS always have a list of docs that specialize, but the list is likely short.
Btw, when I'd said not to worry because you "don't have that", the "that" I was referring to was the version that's like a cancer.
You do have more than just the cutaneous kind, so it's systemic. (These subtypes can and probably will change in the future anyway, that shows you that it's not all set in stone.)
Okay, first things first. To send the minimal to your pcp that he can scan through quickly:
1) WHO has clasified this condition, send only the url (and maybe the title): http://www.bloodjournal.org/content/127/20/2391.long?sso-checked=true#T9
That means that WHO says this is not just some flaky thing. Also, every doc has heard of Blood Journal, so he'll know it's not one of the tens of thousands of little med journals that he wouldn't take seriously. That's Table 9 there.
2) Next, Dr. Theoharides has an overview published in the even more prestigious NEJM, which your pcp undoubtedly subscribes to: https://www.nejm.org/doi/full/10.1056/NEJMra1409760 This shows that NEJM also says it is not just some flaky thing.
3) Then, if he wants to know the Dx procedure, also include this url: https://tmsforacure.org/overview/ which is made by MC doctors.
Yes, you should want to ultimately go to the doc you found (good work!) that advertises that they deal in MCs. But as a courtesy you of course go through your pcp first. Maybe the MC doc requires a referral anyway because they are swamped with these cases, or maybe not.
If you feel like your head is going to explode from all this, then you're doing it right :)
"that it's just symptoms caused by a depressed mood (though I became depressed BECAUSE I have felt sick for so long!)"
That happens also to many thousands of Pts worldwide, when it comes to nebulous immune system conditions. But when you included the list of even more symptoms, that was also even more of a tipoff, at least to me and almost certainly to the doc you found.
E.g, histamine is a vasodilator, so when flooded with it and other mediators, that would lower BP. Known from long ago: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1666775/
"The effects of histamine and some histamine-like agonists on blood pressure in the cat." 1975
Thank you! It's great to be appreciated :) You've suffered a lot, and I'm glad to help. So don't think you might be imposing.
Here's a fact which you will be able to now appreciate: Pepcid and that whole class of stomach antacids? They're actually antihistamines. So is Sominex.
Interesting story about your BP. Did they say, "you're just that way naturally"? That's not true. Btw, for the entire future, tell this background about your BP to any doc (even a dentist) before you get anesthesia.
And... tachycardia can be a reflexive response to low BP.
...and it's suspenseful about what the pcp will say. Are you going to submit that today online?
Maybe tomorrow we can get into why extracts of cherries or olives might be very helpful. (Mast cell stabilizers.)
It would be entirely unreasonable for the pcp to react negatively. Doctors do get bombarded all the time with printouts from blogs like "The Ultimate Guide to Cosmic Health". But we instead submitted high grade authoritative sources.
I have to correct myself. The test that needs to be sent on ice is the urine test sample, not the tryptase blood test.
MCAD can cause enlarged nodes anywhere. MCAD is the umbrella term for mastocytosis and MCAS. The WHO has a classification for mastocytosis, but not for MCAS as far as I know. I'm guessing that you have mastocytosis (not just MCAS) because you get *spontaneous* flushing, besides from triggers.
Drugs are probably more powerful than natural substances in most cases. But not always.
"Quercetin Is More Effective than Cromolyn in Blocking Human Mast Cell Cytokine Release and Inhibits Contact Dermatitis and Photosensitivity in Humans"
Quercetin is a 'flavonoid' plant compound, found in onions, citrus, berries, etc. This experiment shows that it works better than the very expensive drug cromolyn, as a mast cell stabilizer preventing the release from MCs of powerful inflammatory biochemicals called cytokines.
Other flavonoids do similar things, like fisetin from strawberries. Just as there is a very large variety of symptoms in MCAD, there is also variability in which treatments work better in whomever. The flavonoid that Theo uses most is luteolin, from olive pits and olives.
It would probably take a lot of food to equal the amounts in extracts. I have never seen any reports that these flavonoids are harmful. All of this is meant to be a quick overview so that you don't have to pick up things willy nilly from scratch.
As you know, another thing that a person can try on their own is food elimination. Either you track what you eat and observe what makes you feel bad, or eliminate likely suspects and see if you get better. This can be tricky because a bad food might not take effect for a day or two or three afterwards.
The problem might not come from particular foods per se, but from a component in foods -- like salicylates or oxylates, or especially histamine which is found in some foods. Bacteria in raw fish can generate a lot of histamine if it sits for a while until cooked.
If what happens in your gut creates inflammation in your gut, the inflammation can spread to anywhere and everywhere else. It's like a chain reaction and a rising tide together.
When water triggers a painful reaction in you, that might be because the stomach lining is so inflamed that just the pressure from the water sets things off even worse. You sure have suffered a lot. It's really awful that you get told it's not real.
Temperature is a known trigger in MCAD. Stress of any kind is a very big trigger.
"But now I wonder if I should maybe look into more of a diet tailored to histamine production?"
Well, that's for your experimentation. The gut microbiota is a big long-term factor in some people. But consuming histamine can probably have immediate bad effects. There is a hormane called DAO that should break down histamine in the gut. But some people genetically lack that. DAO can be bought as a supplement. On the other hand, some people lack the biochemicals to break down histamine in blood circulation. There's a different supplement for that.
"Unless they are similar?"
Completely different concept and mechanisms. Maybe both have benefit for you.
"...this would also be the cause of the increased C-Reactive Protein and ESR, yes?"
That certainly seems a reasonable assumption, but MCAD is so variable so let' see.
(Afrin went in on her practice group, moved to the big city so to speak)
"Some MCAS patients manifest elevated "inflammatory markers" (for example, an erythrocyte sedimentation rate (ESR) or a C-reactive protein (CRP)), while other, equally symptomatic/inflamed MCAS patients show completely normal levels of certain inflammatory markers. We do not yet understand why certain markers are elevated in some patients but are normal in other patients despite seemingly similar types and degrees of symptoms."
"More research it is!"
That's the spirit :)
"but I wonder if that’s the temp increase rather than the sun...hmm!!"
Excellent thinking pattern.
"a vitamin D deficiency, a somewhat severe one"
Though there has been a lot of useless hype over vit D in the past many years, for some people it is a real problem. Have your levels been coming up from taking the D3?
You need magnesium to make D3 from the sun, a lot of people are Mg deficient.