I meant ultrasound not MRI.
Without seeing the scan reports, I'll have to assume they say that all is normal as far as nodal shape and internal architecture. Therefore, no doc would order an excisional biopsy, though that is the only way to rule out a lymphoma with near certainty. But some docs might be pressed into ordering an FNB because it is such low risk. Even so, FNBs are known for false negatives and there is apparently no suspicious spot to target with a *guided* FNB. A negative FNB is therefore not an end to worrying.
Docs would likely want to see some significant change before investigating further on a blood cancer. Everything seems to point to an immune system reaction at this point. In future, US is better than CT even if w contrast, IMO.
A benign node can be filled with fibrosis and stay enlarged forever.
However, with platelets low and something off with RBCs, you might wonder about possibility of occult (hidden) bleeding somewhere.
'I had a CBC back in 2019 which was truly normal, and in which I was almost perfectly down the middle of normal (except for very very low end of "normal" platelets)'
It would be unlikely for a blood cancer to cause low counts only in platelets. But unfortunately, nothing is simple and almost anything is possible. Still, it's most reasonable for now to look for some other cause of the low-ish platelets, not a cancer in your marrow.
Btw, I see nothing wrong in how your doctors have been doing things.
"So at this point I am wondering if I am out of bound on asking my GP for a referral for a fine needle biopsy?"
Not out of bounds at all, in your case, to ask -- but I'd still expect a "no" answer for now.
Thank you for your gracious expression of gratitude, I appreciate it.
"Over these past 7 months I've experienced labored swallowing, throat dryness, very mild hoarseness"
Whatever caused those symptoms (it is commonly strep throat, from strep bacteria) also caused the enlargement of the jugulodigastric node.
"[patient] ultrasound showed 10mm jugulodigastric node...(please do CT w/ contrast)..."
Since that node is deep and also behind a muscle, a CT can penetrate and see it better than the US that first spotted it - otherwise US is better on surface nodes. Using contrast along with CT means the CT can see the structure inside the node, not merely its outer dimensions. "Loss of hilum" would have been alarming for cancer, but thankfully you don't have that.
"glass of wine It doesn't burn or hurt per say but it certainly becomes uncomfortable."
Probably swelling, because alcohol is a vasodilator.
"Recently the area has started to itch, and the lymph node feels tight (if that makes sense).?" Yes, swelling again... plus the itch is likely caused by histamine produced by immune cells.
Btw, the "B-symptoms" from lymphoma are usually in late stage, not beginning.
"but touching it does make it feel more tender."
Probably you have still some reactive process going on inside there, even if there also is fibrosis.
"another CBC"
In the US, a CBC is around $35. So a doc should not be resistant to order such an inexpensive test for you there.
===================
Now let us switch to a grand view, considering the effects seen in your lungs and also liver via CT. Is it possible you might have had tuberculosis? The alarm word is "granulomas". Please research that a bit, then get back with any questions. Granulomas are something of a mystery entity, produced by the immune system and can be involved in mystery conditions. And granulomas can also fill up a lymph node.
Granulomas are found with TB, but also in a mystery condition called Sarcoidosis. Each can effect lungs, and less commonly the liver, and also neck nodes. Each can also cause throat symptoms.
In addition, a damaged liver can result in reduced liver-produced "coagulation proteins", which can cause easy bruising/bleeding, such as in petechiae.
Have you had the common "liver function" blood tests? If they are abnormal, I'd straightaway want testing done for the levels of your clotting proteins.
cris, everything here is screaming out to me, "forget lymphoma and zero in on the granulomas".
But still, we'll need more clues, in order to work out how the low platelets factor in.
"Since this started I have had problems retaining weight."
If it's from reduced calorie intake, then that's nothing to do with wasting from cancer. Immune system dysfunction can easily affect the GI tract and squelch the appetite.
"Hard gainer/ectomorph."
Bravo to you, for being knowledgeable on those terms and also for being dedicated in the exercise. What would life be without working out, eh? :)
Taking any immunosuppressive meds would likely be quite bad. Vaccines might be bad.
In another vein, blood thinners like aspirin, vit E, fish oil and even cinnamon would be bad.
Well, Cris, there's definitely something pervasive going on - despite all the negative tests.
Normally, I'd follow Occam's Razor and look for one single underlying cause. But in your case, there might be at least two:
- early hemachomatosis creating various bad effects (such as your heart SVT; and perhaps your early onset cataracts [without hyperglycemia] because of hyperferritinemia)
- some genetic immunodeficiency leading to the intractable cold sores, toe fungus, and also to the possible granulomas and to the lymphadenopathy
The geographic tongue is seen by most docs to be just an isolated, benign oddity; but I'd see it as as sign that there is other immune dysfunction present.
It's good that you are so thorough. I think your best chance is to become very educated in this theory as above; and then you can make a logical presentation to any consultant that you see, and hopefully get them to investigate. I'd want a serum ferritin test for starters. This is guesswork but that's the only way to proceed for now.
That's off the top of my head. What's your reaction? This can use further discussion.
Why taking Bromelain and Quercetin?
A small matter: I'd triple the zinc for a month to see if the nail ridges lessen.
You are 6' 7"? That might also correlate with something.
You've traveled a lot. No exotic infections? Anything besides the HSV? Frequent colds or very infrequent colds? Severe allergies or sensitivities?
"Moving to the cold sores…I’m going to risk jinxing myself here and say that I haven’t had any since I got the yellow fever vaccine in early 2019. I know it’s just a coincidence"
Probably not coincidence at all.
"stretchy skin"
Oh, I was thinking of a Connective Tissue Disorder, which can have a dizzying array of symptoms.
"As a kid I grew up flipping through my mom’s nursing books, so I figure at least I’m not starting from scratch with all of this.?"
Yes, you have advantages over the average patient.
"combating general inflammation"
Yes, that's a worthy and necessary goal.
"I have wanted to up the zinc, but every thing I read talks about the dangers of over doing it."
It's maybe possible to overdo it, that's why I'd said "...for a month" as a trial. (The Polident zinc-copper lawsuits were inconclusive, as I recall.) I personally have taken that much. You can find warnings about anything and everything online. It's important to know what's credible as opposed to what is just talked about at the health food store.
"I really am 6’7”….and it’s mostly terrible."
How is it terrible? Healthwise, or just for buying clothes, etc?
"Again, since the 2019 yellow fever shot I’ve only gotten truly sick (stay at home in bed style) twice."
Likely because it changed your immune system generally. Btw, as something of a parallel: there are a few credible stories of spontaneous cures of cancer, most or all involve the person getting some infection which changed their immune system generally.
"(I was 210ish then and lifting all the time, eating a 3000-4000 calorie diet (not a very healthy one) just to stay that weight)."
That shows true dedication and discipline, which ability will be very useful now.
"I was prescribed doxy 100mg per day as a preventative. It made my hair and skin look great and I never got even a sniffle when I took it. The more I read about it the more I am impressed by it!"
Interesting. Please elaborate some more on that. Doxycyclne has anti-inflammatory and antiviral properties, not only anti-bacterial - as you likely know.
"You’ve given me more feedback and more to think about in these past few days than any doctor I’ve seen to date."
And we're just beginning :)
from your tests:
C-Reactive Protein <1 0-4 2
Was that CRP or hs-CRP? The latter is what we'd want.
Height: you apparently aren't near to being anything like Marfan Syndrome. Nor acromegaly. Still, it might somehow correlate with something somewhere along the line.
Doxy: I found just a little as to the Method Of Action. "There are indications that the anti-inflammatory actions of doxycycline and minocycline in osteoarthritis are mediated via inhibition of nitric acid synthase."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4958212/
So you might see if you can identify and take a natural inhibitor of NO, just as a shot in the dark.
But now listen, same source: "Attempts have also been made to elucidate the mechanism by which doxycycline reduces pathology in lymphatic filariasis." That might be nothing but it does involve tropical parasites AND the lymphatic system. And granulomas: https://www.cdc.gov/parasites/lymphaticfilariasis/health_professionals/index.html
"More recently it has showed promise against COVID-19..."
Yes, and was suppressed for political reasons, the same now with Ivermectin.
"I was given to think low C-Reactive Protein was actually sort of a good thing (low level of inflammation)."
Yes, a very good thing. hs-CRP became popularized ~2008 in the famous JUPITER trial as relates to heart disease. However, I'd say there is no such *single* thing as inflammation, so then low CRP or low hs-CRP doesn't mean there is no inflammation.
"Just so I am straight here, are you leaning more towards hemochromatosis and less towards cancer (lymphoma, leukemia, or otherwise)?"
I personally won't give any more thought to cancer in your case, unless new evidence arises.
"I just wonder because lymphadenopathy still trends toward cancer"
Nope.
"I just wonder because lymphadenopathy still trends toward cancer"
Nope.
==========
In a study some time ago of people concerned enough about enlarged nodes to go see a doc, only 4% ended up Dxed with malignancy.
With your negative scans, that figure should drop to almost zero.
I also see the opposite happening with Yellow Fever vaccine and herpes: causing outbreaks. So something is going on, probably "molecular mimicry" as a guess. That makes it very interesting, as opposed to exhibiting "no activity".
https://www.startpage.com/do/dsearch?query=Yellow+fever+vaccination++herpes++molecular+mimicry
"I take this to mean it has off-target effects"
Yes. THs are commanders, while CD8s frisk cells and kill them with a poisoned dagger if they think the cell contains virus. A "neutralizing antibody" can bind to a target like a virus and make it not work, just because the antibody is stuck on to it. E.g.: try shooting darts with screws embedded sideways in them.
apoptosis = tell cell to kill itself in an orderly fashion
"I could spend all day reading articles on https://www.ncbi.nlm.nih.gov/"
That's the spirit.
"Just so I am straight here, are you leaning more towards hemochromatosis and less towards cancer (lymphoma, leukemia, or otherwise)? "
Nope, I think your immune system is doing the node.
"If it's not cancer than how do I get this thing back to normal?"
Ending any ongoing internal inflammation for starters. And hoping for some regression. Macrophages taking tiny tiny bites for years maybe.
"Drainage"
Nope, your scan would probably have seen cystic (fluid) areas, but saw none and that would have been alarming besides.
"surgery"
Yes, excision. But they won't do that probably, because it's benign. Even if you would pay privately, a surgeon might say it's not worth the surgical risk.
"medication?"
There are some for (deadly) pulmonary fibrosis, but maybe they don't apply and probably you would never get them. If you run across anything OTC being discussed, let me know.
Yes, I did notice that the "deep" sub-muscle node is palpable by you, but didn't address that with so much else going on. A sober radiologist would not make such a gross mistake, so I don't know the answer. It was also not very large for its type anyway.
"There's a fine line when addressing a doctor, between coming off to brash or as ignorant, information overload/dumping or as a hypochondriac."
Yep, that is correct. Good luck.
"So now it's wait and see on what comes back with the blood work"
Okay, let me know.
Btw, many people with immune dysfunction eventually get (wrongly) told that it's all in their heads. They might get prescribed tranquilizers or anti-depressants.
Well, we can rule out a genetic excess-iron problem, so that's some progress. The hard spot is probably a calcified node or a calcified nodule. Because of your history, I don't think that's a big deal - it's likely just the immune system going overboard in a new place.
Yes, mechanical stress can aggravate inflammation. Pollen can, too. Or a common cold virus. But I'd say the throat infection is driving all downstream inflammation, and other factors only aggravate that.
Circadian rhythms can cause feeling worse at night, with a spike in immune system activity.
'Had a nice little "heart fit" as I like to call it, on my run today.'
Okay, that's the thing I'd concentrate on for now. Make sure the beat is not irregular during fits, or anytime. Maybe your monitor does that, or else feel your pulse to make sure the beat is steady with no missing beats. Let me know about that when you check it. We want to be sure there is no viral myocarditis. Not to be alarmist, but to be prudent: the worst case is sudden cardiac death (SCD), which is what healthy athletes die of during exertion (2nd only to a genetic malformation of the heart, HOCUM). E.g., in many places even teenagers can't resume a school sport after a bad cold without an EKG first. Important: did you ever have that *before* the throat infection?
There is a guy who's been here off and on over a period of time, named Spartan. You can check out his recent post if you like, he's got similarities with you - but not the heart.
Inflammation of the heart muscle can affect electric conduction and make the heart not pump efficiently. Heart block. Nothing to do with atherosclerosis, aka blocked arteries.
"As for the heart issue: It started in 2008"
Okay, then we can discard SCD. Probably. But check if any future episode has irregular beating. Keep in mind that the heart episodes are an oddity that might be related to everything else. This is called Occam's Razor.
You might know that the max heart rate that you can achieve declines with age, and is generally 220 - age. It's a casual, back of an envelope kind of thing.
"Behind the jaw bone one finger width up (but below the ear lobe) I noticed a very hard knot... just muscle or tendon"
Muscle wouldn't be *very* hard. But if the bump isn't more or less rock hard, then it's not calcification.
So then, Cris, if you accept that you shouldn't worry about lymphoma, what would be your chief complaint at this point?
"The truly disturbing thing was it happening a few time from '15-17 when I was doing almost only weight training."
You might have paroxysmal superventricular tachycardia. The EKG report might say that. Maybe you were over stressed during that period.
"right side jaw pain"
Likely inflammatory chemicals leaked to there, including such as bradykinin and Substance-P, which cause pain.
"even more palpable"
It could have expanded, or have swelling/edema around it.
"I need to go back over all my notes, bloodwork, and suggestions you have offered again."
Wow, that's terrific :) It's really up to you now to self-observe and learn and experiment. That's your best hope, there is very likely no magic consultant that will set things right.
"My doc isn't likely to see me anymore in regards to this, pending a drastic change, so that avenue of input seems lost."
True on all 3 points.
"It just worries me that something my be manifesting silently,"
True, it is. But no reason to think it is lethal or even near that. It might be mainly a nuisance.
"that I could stop it early,"
Maybe. You said you were trying to live anti-inflammatory. I think that is very much the thing to do, but it is exceedingly complex. Inflammation is not like a single stream, it's more like the Mississippi River delta. Imagine that seen from overhead, various interacting pathways.
"and instead the problem is just going to get worse"
Usually, but not necessarily. There can even rarely be spontaneous remission.
Hi, cris. I do remember you. You are very methodical and self-observant, which is very good.
"I'm trying not to be one of those people."
I appreciate that, thanks.
"I still have chronic lymphadenopathy on my right jugulodigastric lymph node..."
Ongoing reactive/inflammation. Something is causing release of inflammatory biochemicals, which in turn are causing all your regional symptoms. You also possibly have some fibrosis and/or granulomas in the node.
"lethargy, low energy"
The systemic symptom of fatigue/malaise, as in Chronic Fatigue Syndrome aka ME, fibromyalgia and other mystery illnesses. I'm not saying you have CFS/ME, I'm saying that inflammation like that is present in several conditions which are not well understood. Btw, there has been huge controversy in Britain over CFS/ME. It's also more prevalent there. Also btw and as a parallel example, people who take the drug interferon have the lethargy, it's a synthetic version of the natural immune system biochemical. The tiredeness from flu is from immune system biochemicals.
"lightheadess at some points of the day (diminishing)"
Probably from low blood pressure, brought on by vasodilating inflammatory biochemicals. Take note if it especially happens upon standing; stand then observe your pulse rate, e.g. (reflex tachycardia occurs because of low BP).
"Off to my GP tomorrow"
Who hopefully is not clueless :)
"who I hope in-turn does either a laryngoscopy or endoscopy of some kind."
I'd ask for CRP and SED-rate blood tests, for starters.
"An MRI or PET Scan would be nice for the lymph node"
PET they would never do for this, it's whole body and it's also not helpful for this situation anyway. To scan the specific node, they won't use expensive MRI. If the node is near the surface enough, then the most used and most useful is ultrasound. If deeper, then it's the stodgy CT - but if they don't use contrast, then the CT will only see the size/shape which is not all that useful. Though contrast has a (small) risk attached, that's still what you want in order to see the "internal architecture" of the node and especially wanting to see the presence of the "fatty hilum". You should want the ultrasound because that gives better info regarding demonstrating that it's not-cancer.
Overall, the enlarged node is just part of the overall inflammatory clinical picture. Too many docs will just want to rule out cancer, then they'll not investigate any further for the true cause. Expect that, and try to present a case that you want more.
Good luck, cris.
"I was given Prednisolone"
Brilliant! I suggest that myself in mystery immune conditions, but few docs ever do it. She's a rare one. It's a trial, not suitable for long term management except when completely necessary, as there are too many sides. But the trial can give useful clues, as yours did.
"blood was drawn"
It's important to state which particular tests, then I can know what they're thinking. Probably CRP and ESR are included.
"Prednisolone today and my swallowing seems slightly better"
Yep, as anti-inflammatory - which includes being anti edema in your case.
"It was a real issue"
Emphasize that to the ENT so they will take you more seriously.
"Maybe just a placebo effect"
nope
"lightheadedness is still present but only when I stand up quick"
POTS and the underlying orthostatic hypotension are a common feature in mystery immune conditions. People can actually pass out during a tilt table test. [You can see I'm throwing in terms which you can look up as you educate yourself into becoming a pretty fair expert in what you have :) ]
"When I was heavier (195lb and above) it actually went away completely for a few years"
If you can discover/infer the mechanism for that, you can possibly reproduce the benefit.
"when not properly hydrated"
reduced circulatory volume, i.e. less blood = lower BP
"vaso-modulating spikes"
Your trial drug is a mineralocorticoid, so you will retain salt and probably thereby increase circulatory volume. I'd try increasing sodium intake as well to see if altogether that helps. A different mineralocorticoid steroid is commonly given for POTS, btw.
"4 night sweats. Two were drenching and 2 were just uncomfortable. When I mentioned that to my GP her eyebrows went up"
Me, too. Very much so. Not that it's a danger, but that it's a marked progression and is also a clue. It's an inflammatory thing - not a cancer in you. Try to think if you did anything different before that appeared. Or did you catch a cold, e.g.?
Take your temp when it happens to see if it is a real temp change, or just a perception.
If the ENT turns out to be just a plodder, then your insightful GP will be your greatest asset. She seems to be tops.
I'm glad to be of help. Let me know anything new, cris.