"1. Lymphocytes 56% (a limited panel of antibodies was performed due to low cell yield)
2. Mixed population of B-lymphocytes (5%) and T-lymphocytes (51%)
3. No B-Cell surface light chain restriction is detected
4. CD45 negative 44%
5. Events/Debris: (may represent degenerated cells/unlysed red blood cells, debris, etc)
6. Each marker in this analysis was used to assess for potential antigenic abnormalities or to evaluate detected abnormalities. "
Yes, this new info is exactly what I was talking about, for the biopsy to see what immune cells were present. That can point to what the infection is/was. T-lymphocytes are of two subtypes, the killers (CD8) and the orchestrators/managers (CD4).
I don't know why they didn't assess the ratio of CD8 to CD4. If there are a lot of CD8s, that would tend to say that they were in the node to kill virus infected cells.
CD8s kill by making a hole in a target cell and then putting into the target cell a biochemical that makes the cell destroy itself. A virus can only replicate itself inside a cells, so that's how the virus gets eradicated.
This might be a useful avenue to find an FM ID doc, crow: https://www.ifm.org/
If absorbing all the knowledge makes you feel like your head might explode, then you know that you are on the right track and are proceedng correctly :)
"I'm just brainstorming and trying to weigh all possibilities."
Excellent. Therefore, you need a doc that won't just put you on the standard conveyor belt, because you are not a standard case. I'd look for a Functional Medicine ID doc, if such exists there. "Functional Medicine" is not a board certified specialty, it's a self-described approach to diagnosing.
Make sure any good reviews aren't merely for being pleasant.
However, an actual Diagnostician (not a fake one with a false promise) is still the #1 preference.
CT is like having a loaf of raisin bread and looking for raisins in it by slicing with a knife. The more slices = more radiation, so it's done at specified places only. CT is not a top-down full body scan.
"Is there any possibility that the pain from the nodes is entirely caused by fibrosis"
Very very unlikely.
"... and that I'm not actually fighting an infection?"
or it might be autoimmune or autoinflammatory with no infection, which we'd call "sterile inflammation". If a doc doesn't know that term, I'd be unhappy.
"I know I have the small brown blisters on my lips, but the last one was over two years ago."
Show photos.
"...but I'm wondering, is it possible that an infection that I may have been fighting in the past left residual symptoms, i.e. my digestive system is chronically affected possibly due to an intense candida overgrowth?"
Yes. And antibiotics can do that also. Imagine digging up a lawn, then anything opportunistic can grow there. But most ordinary docs probably would ignore this.
"And perhaps even the brown lip blisters are related to the digestive issues?"
Everything is almost certainly related in one way or another. That's why a Functional Medicine doc is useful for you, they want to know the 'why'.
Here's a handy guide :)
1) In your first minute with any new doc, tell the chief complaint and the intro. Don't let them take you off track.
2) Optional: Ask if your biopsy specimens can be re-stained to look for pathogens and immune cells such as macrophages and T-cells, etc. Let me know the answer.
3) Optional: Ask if you can be tested for serum interferon or something similar to look for any virus infection in general. Let me know the answer.
4) Mandatory: Restate your chief complaint so you don't merely get told that you have "nothing serious" and get ushered out the door.
It's possible that the fibrosis is the cause of the vascular congestion, if it interferes with blood flowing out of the node.
Then I'd call the nodes "intermittently tender". Probably, the internal inflammation is increased then, which could come with more swelling. But no, infection wouldn't increase nodal size as far as I know as there is no pus. There is no caseous necrosis, either, else the biopsy and even the US would have seen that.
There should be size(s) on the US report, though that is not nearly as accurate as CT or MRI. However, we can say their size is unchanged over the eight years, so exact measure doesn't matter over the long term.
Nodes can "wax and wane" because of inflammation. And inflammation usually gets worse overnight, then better as morning progresses. Inflammatory chemicals can cause pain.
"I asked him what the next step would be if the CT scan came back with abnormal results, and he said I’d probably need to go see an infectious disease specialist"
Okay, that fits with what we'd discussed.
That reminds me: "I only ask because my love life has been put on hold essentially since this all began. I was dating someone a little over a year ago, but I was so worried about passing something on to her that I broke it off with her."
I'd make it a point to emphasize that as the CHIEF COMPLAINT to any doc you see. Right along with the intro we made. Otherwise docs would tend to brush you off as not having any serious condition that needs resolving. Like so: "We don't know why it is or what to do, and it's not threatening anyway, so just don't worry."
"and the report states that nothing of the sort was found."
I didn't see that in what you had posted. Did you?
"he said it is standard protocol for them to look for those things in the first place"
That's not what I've seen happen, with people who've come through here.
"Mine have a sporadic throbbing, tender pain on nearly a daily basis."
The throbbing is not usual. Tender to the touch/press is usual, if tenderness exists.
Usually the tenderness in reactive nodes exists when the node gets large enough to press against the enclosing capsule. Sort of like a sore pimple. But yours aren't that large, IIRC. I don't recall the size offhand.
Cancer doesn't typically have tenderness because the cancer grows right through the capsule and therefore doesn't press it from inside. A cancerous node, though, can have pain when there is a necrotic center that is bleeding, which you don't have.
My best guess as to why you have throbbing is that it's related to the vascular congestion, which is creating some pressing.
I'll repeat that I have never seen vascular congestion mentioned on a path report. It is then either so commonplace that no one mentions it, or else it is rare and it therefore is a top clue. My guess is that it's the latter.
The DDx for nodal vascular congestion didn't seem to indicate that it is commonplace. It is rare and the condtions that can cause it are rare.
A means for detecting that some sort of virus is generally present? How about a lab test for serum interferon (IFN). IFN is an antiviral cytokine.
That could be a blazingly useful idea. But then just now I don't see it on walkinlabs or even on labtestsonline. So maybe it's only still a research test for now. Oh well.
Hmmm... if I was going to have the CT, I'd mull over having sugar beforehand, because of your strong reaction. It's possible that'd make the abdominal nodes enlarge. This would be akin to a 'provocative test'. Well, this is thinking out loud. I'm not sure if it provides any useful info even if the nodes do blow up.
"Would a CT scan provide any evidence that it's not just fibrosis, but in fact, they are reacting to a pathogen/other condition?"
Well, if there were many of them in chest/abdomen, that would be a clue to some condition. But you don't have granulomas, so TB and sarcoidosis would be ruled out. Cancer is pretty much ruled out. There could be infection or hypersensitivity reaction to things in the gut, but that doesn't fit with your history.
I never tell anybody to *not* do something. If you want the CT, it would be like a fishing expedition, but there is some small chance they'd find something useful. It's of course up to you. If they found many nodes then that would probably provoke more investigation, yes.
I'm thinking the last doc ordered the CT because he has no idea of what else to do, and because that's almost the standard path.
Would the CT see nodes as reactive? As far as I know, CT would only see the hilum if contrast is used. Without contrast, it just sees dimensions. It won't see the follicles, fibrosis etc.
But your point of how to convince them that something is ongoing and not just leftover remnants of past infection? Well, that's good thinking and something to mull over.
[mulling...]
"Would it show anything INSIDE the nodes to show that they are, in fact, tender?"
Hmmm... maybe Doppler US on neck, axillary or inguinal nodes. That'd show any increased central blood flow, which means ongoing inflammation. (Cancer has increased blood flow, but it's peripheral -- on the outer parts of a node.)
That's unexpected about LabCorp. I guess they are expanding their business that way.
"another pathology review of my tissue sample (as suggested in the link you posted)."
I don't think that just a simple review of the same slides is very helpful, if they haven't stained for pathogens. There's nothing new for the reviewer to see. But we're getting out of my field here, so that's just my guess.
"Is there any possible way to culture a virus or finding out if there is one present other than testing for the specific antigen?"
There is such a thing as culturing virus, though I've never heard of it being used. Besides the other method of looking for antibodies to the virus, there is yet a third: looking for virus RNA or DNA. A technique called PCR can take a sample with a minute amount of DNA or RNA and amplify it to where the level is high enough to be detected. But they need to look for specific DNA, not just 'general virus'.
If there were lots and lots of T-lymphocytes in your specimens, then that would point to virus infected cells. T-cells kill virus infected cells.
Looking in specific tissue is not the same as looking in blood.
"Hell, I even told my PCP who ordered the biopsy that I wasn't concerned about cancer, and I was leaning more towards an infection. You'd think he would have felt the same when I explained my chronologically listed symptoms."
Yep.
Overall, I'd guess that the possibility of an infection is 50%. I'd think the chance was less than that, except you had the lip lesions which seem to point to an infection. That's why I think that docs dismissing the lip lesions (simply because it is not a major problem) is a mistake, they disregard it as a clue to the overall problem.
I would guess that the pathologist who did the biopsy path report won't talk to you, but it's worth a shot, or even to talk to whoever answers the phone in their office.
I know that somewhere somebody had told me they had their specimen taken from storage and re-stained for a new examination, I can't say how common that is.
Let me answer this quick while you still have time to make calls. The hospital where your biopsy was done most likely has custody of the specimens.
Also, take a look under "How long are pathology specimens kept?" https://www.cancer.org/treatment/understanding-your-diagnosis/tests/testing-biopsy-and-cytology-specimens-for-cancer/what-happens-to-specimens.html
It's for various years, and it's a law.
Some are frozen, some are fixed with formalin (like formaldehyde). Freezing doesn't destroy the DNA.
About blood donation, that's good thinking but it's tricky, so we can take that up later. Generally, I don't think they look for everything. But bacteria in the blood (bacteremia) can surely cause sepsis, which is a major killer.
Now imagine if your biopsy specimens had been deliberately examined for the presence of bacteria and fungi.
A pathologist can also make a good guess about possible infection by seeing what types of immune cells are congregating in the node, and at which exact spots.
Now we're cooking, crow. Everything up to this point was just the preliminary groundwork.
"I've done some research..."
Excellent.
"Chronic Fatigue Syndrome which I have found can sometimes manifest after a viral infection,"
That's some good zeroing in. Because a Post Viral Syndrome can change the immune system so that the body thinks there is still some infection when there isn't. Nodes mostly react the same either way.
(More generically but less often used is the term Post Infection Syndrome.)
"If I'm understanding this right, then if there IS a pathogen, then the B-lymphocytes, which are blood cells, proliferate inside the nodes."
Yes, but autoimmunity can also cause B-lymphocyte proliferation.
"In my mind, this would mean that my white blood cell count would increase."
Yes, but it's not all or nothing. E.g., there could be a slight rise on the CBC, but still within normal. But you are quite correct that any doc who suspects infection would do a CBC and an elevated B-cell count would usually point to a virus infection. (Elevated neutrophils generally point to bacteria or fungus.)
Most of the increased numbers of B-cells stay in the node, hanging out at the exit and secreting antibodies. But still, a significant number of B-cells go traveling around in the bloodstream. They would show on a CBC. They also travel around in the lymph fluid.
(Just as a counterpoint: If all the new B-cells stayed in the node, blood levels would not increase. That's usual with lymphoma.)
I don't think that Chronic EBV shows a high B-cell.
"If I were to take an immunoglobulin test, and the result was high, would that mean that I have a high amount of antibodies in my blood (which may suggest an infection)?"
That's typically done to look for a B-cell cancer, which would produce huge numbers of antibodies. But you are correct, that test might be helpful in looking generally for infection. I'd ask for it. Good thinking on your part.
Btw, what's more famous is looking for antibody levels to a specific antigen. Say, Hepatitis C and so on.
Most cases of Chronic Fatigue Syndrome are likely immune mediated, but CBC and every other blood test is normal. Besides counting levels of cells, there are also levels of immune system molecules like IL-6, IL-10, interferon and *histamine*. The complexity can be endless.
Many, many people with mystery immune conditions are told "it's all in your head because your tests are all normal".
Many of them say, "I've been to so many doctors and all different kinds of specialists, and I still don't have a diagnosis. I was so healthy and fit before this started, I just want my life back."
Btw, do you flush a lot? Have bad reactions to bee stings?
"I'm just trying to piece information together to see if it leads me anywhere"
Excellent! That's the best chance you have, so you can guide doctors and not just go along passively for the fruitless ride.
Remember the term "unrefreshing sleep" to tell to docs.
"I have an extremely difficult time falling asleep"
Did you know that sleep-inducer drug Sominex is really an anti-histamine? Histamine is an immune chemical.
"Wouldn't it make sense that, if my body were fighting off a virus/bacteria/fungus/parasite/etc, that my white blood cell count should be out of normal ranges?"
Usually, but not always. Look up Chronic EBV and occult infections, e.g. Chronic Lyme may or may not actually exist, it's up in the air -- but we do know that some pathogens can sort of evade immune surveillance.
I doubt a tooth infection or an infected cut would create noticeably elevated CBC. Or a bladder UTI, but a UTI in a kidney usually will.
"After all, isn't it white blood cells that rush into the lymph nodes during an infection, thereby, increasing in total count on a blood test?"
Lymphocytes proliferate inside nodes. The B-lymphocytes do so inside the tiny structures called follicles of nodes, which is what your path report referred to. B-lymphocyte proliferation occurs either in reactive nodes, or else in lymphoma (which you don't have). Nodes can be reactive because there really is a pathogen, or because the body wrongly thinks there is a pathogen (generally that's auto-immunity).
B-lymphocytes manufacture antibodies, which is another name for immunoglobulins. Did you ever have high or low?
Here's a shot in the dark. Try a naturopath. Find one that's not flakey. Not the "new age" type. By chance you might hit on one that has seen somebody like you.
"Do you think whatever’s going on with me is contagious?"
It's possible, because the path report said "reactive". If the nodes are reactive because of a live pathogen (that's the most common cause), then it's also possible that the pathogen is contagious.
Your own lymph nodes are a more sensitive indicator than any array of lab tests. (Then again, since nothing is simple I have to add that *sometimes* lymph nodes can be falsely reacting when there is no live pathogen.)
"I am otherwise... 100% healthy."
Nope, I'd have to disagree. Somewhere above you talk of tiredness, which is very common in mystery immune conditions. I'd make it a must-do during the coming week to get sufficient sleep, no matter what else. If the tiredness doesn't go away, that's "unrefreshing sleep" and that's a clue. The tiredness can be from immune biochemicals.
I'm sorry to hear that, crow. This is the one who said he likes to tackle and solve mystery conditions? What he did sounds like merely the basics that any ordinary primary doc would do. Like going back to step 1, instead of doing any advanced thinking.
I don't see any reason to do the CT. Neither did any of your previous docs. That's also just a beginner thing. Whether there are many or zero enlarged nodes found, so what? That tells almost nothing about the 'why'.
If it was me, I wouldn't go back to him. I'd also be leery of the radiation. Did you ever post your age?
How about you find a Diagnostician listed as such at a large hospital, and see what the wait time is. Maybe because of the virus, you can get in quickly.
Ken, I have an update. I just saw the internal medicine doctor. Here's the good news: he was very attentive and a great listener. He also explained things extremely well. I spent probably half an hour with him, an opportunity that I have not had with any of my previous doctors. I don't necessarily have anything new to add other than the fact that he wants to do a CT scan to check for all enlarged lymph nodes from my neck down to my groin. I mentioned that I heard (from you, although I left that part out) that further tests could be done on my lymph nodes since it was general practice to keep them frozen and stored. He didn't know anything about that, and he also didn't really have any inclination to do any further testing on the nodes. That was a little disappointing. However, I'll wait to see the CT scan results and go from there.
He felt my nodes, and although he agreed they were enlarged, he felt that it was a good sign that they have not changed in size over the past 7-8 years. I brought him the lymph node biopsy report along with all other generic blood tests I have taken. He clarified that "vascular congestion" was just excessive blood in the tissue but did not know what "rare possible follicles" means. He did not feel the lip mark/lesion was a concern, and although I told him about the bloody stools, he really didn't have any answers for me.
At the end of it all, I suppose there's good and bad news. I didn't really learn anything that I haven't already been told, and it was somewhat disheartening that he kind of glossed over the bloody stools and lip lesions. However, if there is any positive takeaway from this, at least he is willing to perform a CT scan.
Do you have any thoughts on this?
That sounds very good, crow. Nice and soon. If he worked at a large hospital, with the word Diagnostician right on his door as an unofficial but promoted/advertised designation, it might take longer.
Tell me your opinion: how is Covid influencing how long it takes to get an appointment these days? Quicker because patients don't want to go in? Or the opposite?
"blood in my stools every other month"
You can ask him to write a standing order for whatever tests are appropriate, that you can use whenever the bleeding occurs again. E.g., an INR (blood clotting time) test. Maybe CBC (for platelets). Live function tests (the liver makes clotting proteins).
Or you might choose not to bring that up this visit, but wait and call when the bleeding re-occurs.