That's probably from the vascular congestion in the nodes. IOW, a lot of blood cells packed into the blood vessels, with some possible swelling that causes the tenderness.
"swollen for 8 years"
That's likely mostly from the fibrous tissue, which can last for very many years and is more or less inert. A synonym is scar tissue. It probably occurred from an infection that got into the nodes.
"The findings suggest a reactive lymph node"
So something (that is not-cancer) is still ongoing in the nodes. The term "reactive" usually means that the immune cells in the nodes are reacting to some infection; or are reacting to some sort of imaginary infection so to speak, IOW something like autoimmunity.
If there is an active infection, it would likely be an STD, or something like a cut that happened on a leg or foot. How about cat scratches?
Are you having any joint or skin problems?
That's for starters.
As for disseminated gonococcal infection? I'd think the pathologist could have looked for gonorrhea in the excised node, with an appropriate stain. Since you don't mention it was found, I'd guess with your history they did look but it was not found. Correct or not?
You had the CTDCascade test. If that was after the biopsy, that tends to say the biopsy ruled out gonnorhea in the node because they began looking elsewhere.
ConnectiveTissueDiseases are autoimmune, like rheumatoid arthritis.
"Could you point me in the right direction where to go with this now? I am at a loss."
"I have painful knee joints..."
It might be lucky that you have the knee problem, because that gives you reason to see a rheumatologist. I think months ago I had mentioned to you 'reactive arthritis'. That's when something elsewhere is causing generalized inflammation, which probably stirs up your immune system which can then attack your knee. - and also keep the nodes inflamed.
How much swelling is there? (That'd be easy to know if only one was bad, then you could compare one to the other.) Was there knee swelling from the very beginning day that the nodes popped up?
What happened when you tried ibuprofen? What location internally *exactly* is hurting? A rheumy would want to know e.g. if it's the synovium, or maybe something like a torn meniscus - but it'd be unusual to have two torn at the same time.
Important! Are the knees bad in the morning? For how long? (We're trying to distinguish between mechanical damage and inflammatory problems. Being bilateral tends a lot to inflammatory, being sudden onset might distinguish which kind of inflammation.)
If the knee is secondary to some inflammation, then what the rheumy does would possibly also end the node tenderness.
"I have read that sometimes lymph nodes can stay swollen, but they should no longer be tender. Mine are still tender."
Yep, as discussed, the internal blood can cause the tenderness. You have both that and the fibrosis -- and probably inflammation also which can cause swelling which can cause tenderness.
Having the blood congestion in there is probably much less frequent than inflammation or fibrosis, so that's a noteworthy clue, I think.
"All of my bloodwork is normal; absolutely nothing out of range. If this is, in fact, an infection, how do I go about knowing what infection it is?"
Well, it would be in tissue somewhere. An 'occult infection". It might even be in the knees. Not likely, but possible -- and anything likely for you has been ruled out.
I know somebody who had a knee replacement, all was fine. Then he cut his hand while working in the yard, that bacteria travelled to the knee. He had to have the knee redone.
What Tx does a rheumy do for a rheumatic disorder? Mostly immune suppression. The same as an immunologist might do.
"...small brown lesions on my lips... I had a dermatologist look at it, and he told me it was nothing to be concerned about"
Right, because it's very minor and a dermatologist probably isn't going to consider a systemic inflammatory cause. But a doc whose field is the immune system could consider that a clue to your mystery condition.
I'd also observe myself very carefully and see if anything eaten makes things worse.
Thanks for the nice compliments, crow. Right, it's ridiculous when somebody goes online looking for help/info/insights, they get told to "go see a doctor" or "go see more doctors". What could be more useless?
Before we go further: is there also no heat from the knees? Inflammation has traditionally been described as swelling, heat, redness, pain.
Is the location of the pain in the front by the kneecap, inside or outside (medial is where the knees touch, lateral is the opposite), or maybe deep inside?
Well, lack of swelling or heat changes things. A rheumy is also likely to look for morning stiffness that lasts an hour or more, for the knees to be rheumatic. You don't have that, so the problem seems to instead be mechanical injury such as with torn meniscus. Yet why would that occur in both knees at the same time and to the same degree? Seems very odd, but that's a clue.
A working hypothesis for now: something about the infection weakened some structure in the knees (tendon or blood vessels, e.g.). Then you did something like a run and that injured both weakened knees at the same time, but maybe with a delayed effect. Maybe instead of torn meniscus, there is blood inside the knees, as in the nodes. This is a long shot; but then your entire case in unusual, so we have to look at unusual ideas.
Do you have any long time unusual medical conditions, or family does? Lupus, e.g.
Did you have a knee scan? They might start with just a plain x-ray.
I don't know but I'd guess that seeing a rheumy or immunologist depends on what insurance says and what any particular doc requires. There are also online consults, of which I know little but I think you might get a slapdash doc or a good one by chance. Immunologists are probably less common than rheumies, but could be a better choice because a rheumy might just reject you for lack of morning stiffness and swelling. I forget if you have seen an Infectious Disease doc - the spots seem to point to a virus.
An internist that advertises themselves as 'Functional Medicine' would try to tie everything together, which is what you should want. So I'd say that's choice #1 for starters. Ideally, there also are Diagnosticians; they solve mystery cases but they are rare and would require a long wait at a big hospital/medgroup.
I'd avoid orthopedists since they are likely to ignore the association with whatever infection and inflammation caused the nodes - just as the skin doc ignored the overall picture.
Another approach is to find a DDx for why the nodes are congested with blood, and see what on the DDx can also cause systemic symptoms. I'll try to look into that some time.
"...going to try to go for a jog later on today to try and pinpoint exactly where the pain in the knee comes from. I will also take note of anything else I notice while doing so."
Perfect! Bravo :)
Yes, intensive self observation is very valuable in mystery cases.
It also might be unusual that it takes 100 feet or so before the pain comes. I don't know about torn meniscus symptoms, but that should be easy to find out before you go.
"Would one of these types of doctors be able to help me find a diagnosis for why my nodes are congested with blood?"
The aim is to find a single cause for all: nodes, lip lesions, and knees. There is the diagnostic principle of Occam's Razor, which says that it's best to assume that everything has one cause - else there's a lot of (possible but unlikely) coincidence involved.
Unless in a big city, I'd websearch there for a functional med internist. You want one that's open minded, but not flakey nor a huckster that wants you to get a lot of needless/expensive in house Tx.
If in future any ID doc says, "don't worry about it", I'd immediately say "Yes, but... I also have the reactive nodes and the knees, so what infectious agent can do all three?"
"all I can do is hope and pray that this is not a virus"
I just stumbled on something. It might be vascular, an angiokeratoma or something similar. That could coincide with the vascular congestion on the lips and maybe also the lesion found via the intestinal scoping (plus the sometimes bleeding).
Congratulations on your successful running experiment, crow. That probably also means though that a rheumy would say, "why did you come to me then?" But always personally remember that the knee experience is a clue.
Okay, let's focus on the candida for now. If you're feeling adventurous, you can do a simple test. Eat something heavy in sugar (sucrose), preferably thick like fudge. When candida eats sugar, it creates lots of gas. If you don't get full of gas, then we'll tend to think against candida. (Drinking soda might only mean the sugar gets absorbed before the yeast can start working on it.)
Candida is white, as seen in oral or throat thrush. Can it produce dark lip lesions? Probably not, but I don't know for sure.
What candida can do is generate lots of toxins, including aldehydes. I've even heard that people with lots of GI yeast can sometimes feel alcohol intoxication, that's what fermentation by yeast makes. Heavy overgrowth can also create 'leaky gut', which means lots of bad molecules get into blood circulation. That can create generalized immune activation, like tons of sirens going off, which can make the nodes react.
You don't have periods where you feel tiredness and malaise for days?
"With this information, what is the next step you think I should take?"
A functional medicine internist. Hopefully you can find some with ads and/or reviews, to find one that is not too straitlaced and not too flakey - being just right :) Not too young (inexperienced) or not too old (possibly burned out). I'd certainly mention Occam's Razor, and if the doc dismisses that, Id' think I got the wrong doc.
In the meantime, we can still be going back and forth like we are. The more than you understand going in, the better off you'll be and the less precious time with any doc gets wasted.
Tx for yeast? Trying to starve it, kill it, and/or intervene in inter-microbial warfare - i.e., promote its competitors. However, that doesn't remove the underlying problem, it just removes the trigger. Which is still very good, of course.
Your biopsy pathology seems mostly done only to rule it a cancer. I'd want a doc to have your frozen samples stained and tested for whatever active infection might be present. AFAIK, that would look for microbes, or for whatever immune cells are thronging inside the node. E.g. lots of T-cells can mean a virus is being fought.
"...functional medicine internist. Is this the same as a Diagnostician?"
Nope. I'm curious about the waiting time for the diagnostician. Let me know.
"I don't think they would have a sample of my old tissue still frozen"
Doing that is standard.
"It was extremely difficult to get my PCP to agree to the first one."
Probably because the ultrasound said the nodes were benign. Plus the behavior (not growing) is benign.
It's actually a very good plus for you that someone can examine the biopsy samples to try to see what infectious agent(s) might be present.
I took some time to look into "vascular congestion" in nodes. There is very little info. In 10 years on this forum, I have never seen that before you. So since it is rare, that should be a tremendous clue for a diagnostician.
It might be that the times you have GI bleeding is because you slip and have sugar. But yeast can also live on starch.
There are some bacteria that mimic yeast. Klebsiella is suspect in spondyloarthopathies, which can cause knee problems.
"Do you recommend that I make an appointment with the Diagnostician, or do you think I should try to seek out a Functional Medicine Internist?"
The diagnostician is probably better, but the wait might be half a year or more.
"I should not be bleeding in my GI tract?"
Correct, there is some pathology. But if it's transient, it might not be that noteworthy.
You didn't select an internist that says they are "functional medicine"?
I'd be determined that all your symptoms be seen as related to one underlying cause (the Occam's Razor approach). Each Sx (symptom) is a clue to all the other Sx's. Else each individual Sx could be dismissed as not very threatening and not able to be Dx'ed individually anyway. Most docs (excepting diagnosticians) don't like cases they can't solve right away, so they might dismiss.
Yes, definitely stress the node's vascular congestion - because it's rare. Let's say you want to narrow down an animal. I say it is large. It has hoofs. It runs fast. Then when I say "striped", then BAM that zeroes it in to zebra.
"Do you think I should take my other tests to him as well such as the CBC/differential; metabolic panel; etc?"
If it's not a lot of trouble, yes. Because that doc doesn't know yet that you are smart and capable, and what you say can be relied on. So they might want to see for themselves. Some practices will want to redo all tests anyway, like Mayo.
I would begin by saying, "It all started with the STD, and then I reacted in ways that are not the usual. I think I maybe possibly perhaps have a persistent infection AND unusual immune reactions". Trust your own instincts. You are somewhat lobbying as to which direction you'd like the doc's investigation to go. You don't want to get merely dismissed like with the skin doc.
Write down questions beforehand. It's common for something to come completely out of left field, then you forget your prepared speeches. Good luck. Let me know.
'it states that there is "vascular congestion and rare possible follicles". I just wanted to clarify that the "rare" adjective was specific to the "possible follicles", not the "vascular congestion". Would this change anything in your assessment?'
Nope, I believe the pathologist is talking about quantity of follicles, not the rarity among the population of patients, of that finding. The follicles are like tiny factories where immune cells (the B-cells) would be made when a node is reactive. That node had only a few follicles.
But I do think that the vascular congestion is rare in the population. That's why it's probably a good clue.
Btw, your detailed analytical thinking on all of this is great. I think that's your best shot at getting a Dx, rather than just being a passive patient bouncing from one doctor to another.
Okay, if the good diagnostician-internist is available, I'd go there. I think that outweighs the age considerations, *especially* if his good reviews are recent.
In your mystery case. I'd disregard any good reviews for any doc that are based just on bedside manner. But the trait of "good listener" is valuable for your case.
"Do you think I should look for another appointment with someone else in the meantime?"
"Perhaps with the Diagnostician?
Yes, if there's not a very long wait.
Once again, your thinking is good on all this.
Let's roughly review some terms. Internist (internal medicine doctor) is a "board certified specialty". They have to study that and pass exams for it.
But 'Diagostician" is merely informal. It is meant to indicate that this doc believes they are good at mystery cases.
Also, "functional medicine doctor" is also informal, and is meant to indicate that this doc looks for reasons *why* the patient has particular symptoms. So that's also good for mystery cases. (The ordinary approach, which is standard, is just to 'pattern match' symptoms and get the patient out the door.)
An internist is an ordinary doctor, like a General Practitioner. Except that an internist is for adults only, not children.
Surprisingly, what we commonly think of as specialists (such as cardiologists and rheumatologists) are really a sub-specialty of internist.
Too much info, I know :) But I'm on a roll :)
As always, let me know what happens.