Why have my lymph nodes been tender and swollen for 8 years?

[thecrow555]

Hello, everyone.  I have had swollen, tender lymph nodes for just over 8 years now.  They are larger than they should be, are very easy to feel, and are tender to the touch (even when I don't touch them, they often have episodes of tenderness even in a relaxed state).  My primary doctor felt them and agreed they are enlarged.  He ordered a lymph node biopsy after an ultrasound.  I have the diagnosis notes, which I have listed below.  In addition to asking for suggestions on what could be causing my ailments, I would also like to know your thoughts on the diagnosis:

"...right groin lymph node shows fibrous tissue and minute fragments of lymphoid tissue with vascular congestion and rare possible follicles.  There are no definite Reed-Stenberg cells, metastatic carcinoma or granulomas identified.  The findings suggest a reactive lymph node".

I have recently run tests such as a comprehensive metabolic panel, c-reactive protein, ESR, TB, Antinuclear Antibody IFA (ANA), Thyroid, Cascade, CBC and Diff.  All of these tests have come back normal.

I would appreciate feedback on this.  

Thank you.

[Ken_PA]

"candida"
Yep, it was unknown by the public until maybe ~1990, then it became very fashionable and EVERYBODY thought they had it (because symptoms like malaise are so non-specific), then as a reaction the pendulum swung the other way too much and it became discredited too much.

I actually wouldn't have put that in the intro except that the 'diagnostician' doc might be attuned. I see it as contributing to overall inflammation at times, but it's not a central feature anyway.

Okay, let's leave that out of the intro, and only talk about it with him at a later point.


"it may very well be that it only tests for candida in the blood"
Yep. Except maybe IgA.

Besides, everybody has some in the gut, it's runaway overgrowth that's the problem. There are also some starch/sugar loving bacteria that behave like candida. Klebsiella (possibly implicated in ankylosing spondylitis) comes to mind.

[thecrow555]

Thanks, Ken.  I have scheduled an appointment with Dr. J. for next Wednesday.  His office has mixed reviews online; some love him, and others have complaints (it seems the vast majority of the complaints are with the front desk staff however, and I've seen no bad reviews for Dr. J. himself).  Either way, if things don't work out, I still have the other appointment with Dr. D., the other Internal Medicine doctor, scheduled for October 16.

I truly hope, between the two of them, I can get a diagnosis.  I'm tired of hearing that I just shouldn't worry about it and it's not a problem.  I'm no doctor, but I know for a fact that I should not have painful, tender, swollen lymph nodes and blood in my stools every other month.  Anyway, as always I appreciate the help/advice, and I will most definitely let you know what's going on after my appointment(s).

[Ken_PA]

---eight years--  I think when you first got here it was seven years :)

[Ken_PA]

Here's your intro to the doc: "STD, plus 7-yr multi-region reactive fibrotic nodes with vascular congestion, plus sporadic lip lesions, plus sudden onset knee pain, plus bad candida".

I would say literally that. In email and/or spoken. To any medico that you talk to at any time.

[thecrow555]

Awesome, Ken.  Straight to the point.  I'll memorize this and take him my biopsy/most recent blood work results.

Thanks, Ken.  I think it is worth noting that many doctors (in my experience, and from what I've read from other patients on online forums) do not take candida seriously, to the point where they believe it is in the patient's mind alone.  Now, I can certainly tell the doctor about my scrape test on my scrotum 8 years ago that came back positive for candida, but to actually prove that I'm still suffering from candida will be difficult.  I even had a candida antibody test less than a year ago, and it came back negative (not sure how accurate this blood test is, and it may very well be that it only tests for candida in the blood).  Any advice on how to approach this?

[Ken_PA]

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.

[thecrow555]

Great, Ken.  All of this is helpful.  And both doctors that I mentioned came with very high reviews on "listened and answered questions".  Most recent reviews are from 2017.  I'm unsure how recently the site was updated so I hope he hasn't retired yet.  It says he's accepting new patients so we'll see.  I'm going to give his office a call tomorrow and see when he can work me in.

I will definitely let you know what happens.  Thank you.

[Ken_PA]

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?"
Absolutely.  
"Perhaps with the Diagnostician?
Yes, if there's not a very long wait.


Once again, your thinking is good on all this.

[Ken_PA]

'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.