I'm sorry you've been feeling so badly for so long. I'm going to answer the STD part of this, and then have your question moved to another forum so that others can answer it.
None of this is due to an STD. You had gonorrhea, it was successfully treated and cured. You don't mention a lot about the Hep B - did you undergo treatment for that, or did it resolve on it's own? If you had treatment, what treatment did you take?
I'm assuming you've had liver testing to make sure you have no liver damage from hep B, and all the testing was normal, since you didn't say otherwise.
Also, what thyroid tests did you have done? Doctors don't often run a complete panel of thyroid tests. Thyroid isn't my expertise, but I've read enough on this site to know that they usually omit quite a few of them.
I'm going to have this moved to our Undiagnosed Symptoms forum so that others can chime in since this isn't caused by an STD. I hope you get some help and relief.
Hello, like auntiejessi, I'm sorry you've had to go through all this for such a long time. It sounds like you've been pretty miserable. auntiejessi has already answered the STD portion of your question, which I'm grateful for, because that's not my area of expertise. I do have a few other questions I'd like to ask, though...
When you have the blood in your stools, does that correlate with either constipation or diarrhea?
Do you have the bloated stomach all the time or do you get it, like, after you eat or maybe after you eat certain things? Do you take anything to try to alleviate the bloating? Do you have acid reflux?
When you had the colonoscopy, did they mention whether you have hemorrhoids (either internal or external)? You would probably feel external hemorrhoids, but not necessarily internal ones and if you have trouble with constipation, that could cause them to bleed.
Did they mention (also as a result of the colonoscopy) whether you have diverticulosis, which is small pouches that bulge outward through the colon? It's believed these are caused (at least partially) by low fiber diet.
Have you had any unexplained weight changes? Fatigue, muscle/joint aches/pain, hair loss, dry skin issues, etc?
Although there are many reasons one can have digestive issues, they are one of the main complaints with thyroid issues, however, the one thyroid related test was somewhat useless by itself. Thyroid Stimulating Hormone (TSH) is actually a pituitary hormone, not a thyroid hormone and only tells a small part of the story. In order to get the full pictured of what's going on, you need a full thyroid panel, which includes actual thyroid hormones, along with antibodies to determine if you have an autoimmune thyroid condition. The thyroid hormone tests you need are Free T4 and Free T3. The antibody tests you need are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb) to test for Hashimoto's, which is the most prevalent cause of hypothyroidism. The definitive test for Graves Disease is Thyroid Stimulating Immunoglobulin (TSI). Graves Disease is always associated with hyperthyroidism (over active thyroid). Although Hashimoto's is, typically associated with hypothyroidism (under active thyroid), it often begins with periods of hyperthyroidism in early stages and ends with hypothyroidism.
As for the node biopsy, I would, basically interpret it mean that you don't have cancer but there's something going on in your body causing your lymph nodes to react. Our lymph nodes protect us from infections, viruses, etc. They also react as a result of an autoimmune process in which the body attacks itself, which is what happens in diseases like Hashimoto's and Graves Disease, which are both autoimmune thyroid conditions. It's up to your doctor to find out what your lymph nodes are reacting to.
Hi, Draven. Roughly speaking:
"...right groin lymph node shows fibrous tissue"
fibrosis results from inflammation, it is like residual scar tissue and it can easily last inside a node for seven years and longer
"and minute fragments of lymphoid tissue with vascular congestion"
I'd say that this means there is/was some small activity in the node still going on, likely to fight some ongoing infection. Immune cells proliferate and that requires more blood flow in the central part of the node. (This would also show on a Doppler Ultrasound. It's surprising, to me anyway, that your doc went straight to a resectional biopsy instead of a scan.)
"and rare possible follicles."
the follicles are places inside nodes where B-cells proliferate. B-cells become plasma cells, which make antibodies to fight infections.
"There are no definite Reed-Stenberg cells,"
i.e., no Hodgkins Lymphoma
no spread from a body cancer into a node
"or granulomas identified."
granulomas usually develop from aggregating immune cells called histiocytes/macrophages, to wall off invaders such as bacteria etc. when the body can't kill them off. But granulomas can also occur in mystery immune conditions (an example is sarcoidosis - which you don't have).
"The findings suggest a reactive lymph node."
In this context, 'reactive' means enlarged but not-cancer. It is likely reacting to an infection because of your history, but might alternatively be some self sustaining immune process going on.
Sorry if there's too much jargon, but I figured it would be useful to you if you intend to research more. Hope that all helps somewhat.
Tossing out an idea: why not press some doc to biopsy/sample the brown blister lesion on your inner lip and try to culture that, or look for viral RNA? (The principle of Occam's Razor roughly says that it is reasonable to at first assume one cause, or the fewest causes, for all the problems.)
And/or since you did get so many infections including candida and possibly in the gut, maybe test for late onset Selective IgA Deficiency. Do you have any lung problems?
"Sorry to be a pain."
Not at all. Followup questions from a patient are downright refreshing, as opposed to silence.
Let's take the easy thing first: the absence of granulomas in no way means there was/is no infection. Granulomas can be a not-usual result of an infection, but are not required.
Here's a simplified normal life cycle of a node: it is resting until immune cells bring in chopped up pieces of an invader. The pieces get copied and passed around for ID purposes, alarms are sounded, the production of immune cells that fight invaders is ramped up (which makes the node enlarge), then finally the invaders are defeated. The node then returns to a resting state and size.
Granulomas and fibrosis are possible results, if the invaders had gotten right inside the node and been battled there. They can make the node stay enlarged. Also, ongoing infection can make a node stay enlarged. Sometimes, fake alarms can make a node stay enlarged. All of that gets to the title of your post.
"it's really not a blister anymore."
Sorry, I'd meant the next time you get one.
Overall, I'd suppose that the pathology report from the biopsy is evidence that there is an ongoing, though low grade, infection that started with the encounter. Before proceeding, can you post the ultrasound report, and your most recent CBC?
"...is there any way to go about finding out what this infection is?"
I don't know, esp since there is apparently nothing to culture, and you can't just use a shotgun approach on DNA/RNA or antibodies. You can try a different style and try to guess the pathogen by its behavior and other clues. E.g., it wouldn't be the STD called granuloma inguinale because that exhibits granulomas. It is also ulcerating, but then again here is mention of nonulcerative granuloma inguinale: https://www.medscape.com/answers/219907-26404/what-are-the-signs-and-symptoms-of-klebsiella-chronic-genital-ulcerative-disease (Were you tested for that? Maybe what you have is a different species of Klebsiella, which also causes gut problems...)
Your CBC etc. are right in the middle of normal on everything, so that gives no clue. Thanks for providing the test ranges. Btw, you can also look up "occult infection" - which wouldn't necessarily be reflected on a CBC.
Were you tested for these: https://www.nydailynews.com/life-style/health/ny-news-std-sexually-transmitted-disease-20181209-story.html ?
"No STD lasts for 7 years without either going away or getting significantly worse."
I know very little about STDs, so I'd readily accept that such is extremely unlikely. But I don't think it is valid to say that it is impossible - especially with any condition that has the immune system involved. It's possible for a pathogen to escape immune surveillance by going intracellular, and also possible that extranodal granulomas are providing a reservoir of live pathogen. Some might emerge at times.
After all, one of the main uses of published case reports is to say that "we thought this never happened, but here it is in this patient - rare but true". thecrow has been seeing doctors for seven years on this, so we are looking at something unusual, to say the least. Maybe he's got a mutated pathogen, or an individual immune deficiency, or whatever. Sometimes there really is a zebra in Central Park.
That said, if it is extremely rare, then it's better for now to look at other possibilities that might be less rare. Offhand, I can't think of any - unless if there is some non-STD pathogen that came along for the ride, and maybe that pathogen is from another world region so it's not much known by docs here.
All of this might be moot if the overwhelming volume of the biopsied node is from fibrosis - which seems more than a little likely to be the case from the path report. Let's say a doc agrees to give an antibiotic for 2 weeks to see what happens, which is often done with unexplained enlarged nodes. thecrow's nodes might go down only 5-10%. But then again, he might experience a beneficial reduction in other symptoms. Or... on the other hand, maybe his previous Abx for the STD messed up his gut microbiota, and more Abx would make things even worse.
"I have occasional night sweats about once every 6 months or so that last anywhere from a few days to more than a week"
I'd get a CBC and CRP/ESR then immediately. Just to see.
"I also suffer from digestive issues, i.e. constipation, bloated stomach, and about every 3-4 months, I suffer from blood in my stool that will last anywhere from a couple days to a couple weeks"
I see that you've looked into how the gut microbes can dramatically affect overall health. For some people, it's rightly a huge topic. Unlike most of the trendy things that come down the pike, this one seems like the real deal. For years, there have been patients self reporting improvements in severe immune conditions like rheumatoid arthritis and ankylosing spondylitis. Actual scientific research is underway. You might go super gung ho on this, and make it a long term hobby. This would be managing, not curing.
"The whole thing is very frustrating and even thinking about it drains me mentally."
Yep crow, it can be very draining. Most people give up. If it helps, I agree with you on it all somehow being an infection from the encounter, and on how a new doc wouldn't likely be of much help, and so on.
If you take a day or two or three off, I'd encourage you to get back at it again. We'll be here :)
Many people with mystery immune conditions go through years with many specialists before they find improvement or even a Dx. It can be a long road.
P.S. Barb, thanks for the compliment :)
The South Africa angle might point us right back to some non-STD infectious agent that is prevalent there but not here.
"just in your head"
There are lots of people with mystery immune conditions who have been told that.
auntiejessi, your reply to me was so well spoken. I salute you for having such class.
crow, I think it might be a little premature to end the think-tanking and go to a doc. Also, I can't think of any mechanism whereby lymphatic massages would decrease the intranodal fibrosis.
crow, there are some complicated topics here, and they would take anyone a long time to properly digest. Let me repeat what I roughly think are the main two: I believe (from the pathology report) that the major volume of the node enlargement is from fibrosis -- and there is also a minor fraction from inflammation/reaction/infection, which also produces the pain*. Secondly, "autoimmune" is just one subtype of immune self-destruction, and furthermore ANA is just one subtype of self-destructive antibodies. E.g., if a doc were looking for rheumatoid arthritis, they'd look for certain antibodies which are not ANA.
Since your possible low-level chronic infection does not show on a CBC, I'd guess that your Ig levels would be normal. If you knew what particular infectious agent to look for, they could look for DNA/RNA from that - or for particular antibodies, rather than just an overall level of all Ab's.
Btw, I'm also thinking that your lip's clear-brown-fluid blistering is from a virus, since a bacteria would have redness and swelling, not to mention pus. But that's just a guess.
Thanks for relating what happened with the PCP, that was informative in a way. You might look instead for a functional medicine Internist, as they would give a different approach to your problems - seeking the cause of maladies, rather than just pattern matching by symptoms. Or a Diagnostician -- but they are much rarer, and mostly btw work in large hospitals.
pain* can be from pushing against the node's enclosing capsule, or from a necrotic center. Those do not come from fibrosis. So yes, you had an insightful observation--> "but would they still be tender/painful if it was just old scar tissue from a possible past infection?"
I don't think you ever knew the node size, right?
'I am just not ruling out an infection that may have been passed on to me during this encounter (even if it is not a "typical" STD).'
Right, just as candida is not an STD, but for you it is a D that was ST'ed.
Also be aware that there are such things as 'post viral syndromes' and more broadly 'post infectious syndromes', That is, the immune system goes haywire long term and produces many mystery effects.
Glad to be of some help, crow.
2 very quick things:
- you can post photos to your personal page
- don't discount that antibiotics are infamous for disrupting gut bacteria, and thereby also paving the way for candida
I just uploaded a couple of photos to my profile. One is of the small brown mark on my lower lip (sorry for the poor quality; I tried many different times but it kept coming out blurry). The other is a photo of a dark brown mark on my left calf. I had forgotten about this, but this mark appeared within a couple of weeks of my initial symptoms. I have absolutely no idea whether it is related; I just wanted to point it out since it happened around the same time as my symptoms started, and I have no other explanation for it.
The only other thing I wanted to mention is something that was interesting to me. I was complaining about the throbbing pain internally behind my penis glans to the first doctor I saw at week 3, post-exposure. They gave me an antibiotic while we waited for my test results to come back. As you know, I tested positive for Gonorrhea. The thing is, the pain behind my glans did not go away. Even after another round of antibiotics, it remained. It did not go away until I went to see an urologist. He stuck a thin tube inside my urethra. Obviously, it was painful, and remained irritated from the procedure for the next 24 hours. But what's interesting is I felt immediately different after he did this. Even with the pain from having the tube inserted, the throbbing pain had more or less subsided. By the next day, it was pretty much gone. He performed this procedure at week 12, post-exposure. Now, I will say, he also gave me a one-dose antibiotic while I was in his office, so that also may had played a part, however; if it did, then I have no idea why the first two round of antibiotics didn't work the same way.
The pain behind my glans was very strange. When I researched STIs, the web results always claimed that symptoms of Gonorrhea made it difficult to urinate, was painful inside the urethra and on the opening of the urethra, and oftentimes included a discharge. I had none of this. The pain, as I mentioned was on the underside, just behind the glans, and slightly to the right. And it was internal. No visual abnormalities, but I could feel what felt like a small lump there. Just thought I would mention this.
Ok, guys. I'm finished with the walls of text. Just wanted to fill you in on all the details I could possibly think of in case there is anything that comes to mind as far as suggestions. As always, I do appreciate you reading this thread and helping out any way you can. I hope everyone enjoys their weekends.
Hope everyone had a great weekend. Does anyone have a response to my recent comments above?
I'd also keep in mind that your lymphadenopathy is generalized, not just in one region. That makes a difference in the DDx, as you can see e.g. on the AAFP.org site.
If nothing else pans out, there is also the oddity of the negative titer -- which apparently can be brought about by 'heterophile antibodies'. Figuring that might reveal something useful.