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Why have my lymph nodes been swollen for 7 years, along with other symptoms?

I will try to make this as short as possible, so please bare with me  I am a 35 year old heterosexual male.  Seven years ago, I had intercourse with a stranger.  The exposure was condom-protected vaginal sex and oral (receiving).  One other detail I will note is that she bled on my leg from her vagina.  She said it was due to her being on her period.  Fast-forward 21 days later...I had a painful throbbing sensation in my penis.  It was not in my urethra, nor did I have trouble urinating at all.  No discharge either.  It was a pain on the bottom side just behind the glans.  I could even feel a small "lump" beneath the skin when I pressed on it.  The same day this started, I suffered from anal itching, a red-colored scrotum, along with a small brown blister on my inner bottom lip.  I saw multiple doctors and ran every STD test.  I had tested positive for Gonorrhea immediately when I had my first STD panel done, and Hepatitis B (surface antigen, no antibodies present) at 11 weeks upon my second testing.  I forgot exactly how high my viral load was for Hep B, but it was in the millions.  I had a swab done on my scrotum, and it was found to be candida ablicans.  I was prescribed fluconazole.  I was prescribed an antibiotic for the Gonorrhea and tested negative upon my second test.  My last complete STD panel was just a few months ago and all came back negative, including the Hepatitis B.  

Still, my symptoms persisted and many do to this day.  At week 12, just after my second STD panel, the pain in my glans slowly went away but was replaced with swollen lymph nodes in my groin and armpits.  I still have these to this day, confirmed by a doctor recently.  In the past seven years, I also had two more small brown blisters show up on my inner lip, but a doctor did not seem to think them significant.  When they first appear, they are mildly sore to the touch, but the soreness goes away after a few days.  I am still remaining with one of the brown blisters, although it is not sore at all.  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 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.  The first time this happened, I had a colonoscopy, and they did not find anything wrong (I assume they were looking for a sign of cancer).  The anal itching has subsided quite a bit, but I occasionally still have spells of it, and it seems I always have a moist feeling around my scrotum with a sort of "fishy" smell coming from the area.

The other major issue are the swollen lymph nodes.  They are larger than they should be, are very easy to feel, and are tender to the touch.  My primary doctor felt them and agreed they are enlarged.  He ordered a lymph node biopsy.  When I got the results, he told me they were benign.  I also 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 came back normal.

I would very much appreciate if someone could offer some suggestions/advice on everything I've written above.  The past seven years have been tough, to say the least.  I would really like to get some answers.
18 Responses
207091 tn?1337713093
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.
1 Comments
Thank you so much for your reply, auntijessi.  To answer your questions, no, I did not undergo any treatment for my Hepatitis B.  As mentioned, the Hep B surface antigen came back positive on my second STD testing at week 12.  They ran a viral load test and, although I don't remember the exact value, I know it was extremely high.  I remember the doctor being surprised that I did not have any antibodies.  I let it go and, after some time, I retested and it was negative.  All liver values since then have been normal.  The thyroid test my doctor had me take was called "Thyroid Stimulating Hormone", and the value was 1.31 uIU/mL with a standard range of 0.47 - 4.68.

I appreciate you forwarding this to an appropriate forum where I may find some answers.
649848 tn?1534637300
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.
7 Comments
Thank you for your comment, Barb.  To answer your questions, I have suffered from constipation since my sexual encounter, and I suffer from the bloating regardless of what I eat.  My doctor also suspected hemorrhoids upon hearing about my bloody stools and constipation, but none were found (through visual examination for external nor the colonoscopy for internal).  There was no mention of diverticulosis either.  Honestly, there was absolutely nothing found from the colonoscopy.  No weight changes; however, I do get knee joint pain, especially if I try to run which was never an issue prior to my sexual encounter.  No hair loss either.

I am all for taking the tests you mentioned if you believe it may help me find answers.  Honestly, as bad as all of my symptoms sound, I can live with them.  The thing that bothers me is, if I have some kind of infection, I don't want to give it to anyone else.  I was with someone earlier last year (I always wore protection when we had intercourse), and when I would have a bout of symptoms such as the night sweats or bloody stools, I was worried so much about passing something along to her that I broke it off and ended our relationship.  That is what's most troubling, to tell you the truth.

I do appreciate your feedback.  Are you aware of any doctors on this forum where I may send him/her my lymph node biopsy report and have them interpret it for me?  I don't mean to question the feedback you gave on it yourself, but I'm hoping that a doctor may be able to provide more insight on the terminology used and perhaps give me a more in-depth conclusion to what it means.  Thank you again!
I honestly don't believe you have anything that would be communicable, at this point, since all the tests you took for STDs, Hep B, etc have come back negative.  The conditions I was referring to are autoimmune in which the body attacks itself - they are not passed from one person to another, except that they may be passed down in families (such as something genetic).   It's not necessary to stop seeing someone if you have something like hypothyroidism or another autoimmune conditon.

It's always a concern when there is blood in the stools and if your current doctor isn't helping you find the cause, perhaps it's time to see a different doctor.   I can't see any reason why the sexual encounter 7 yrs ago would have caused you to have constipation.  The fact that the beginning of your constipation coincides that with encounter would appear to be a coincidence.   What types of things have you done to try to alleviate the constipation?  Adding more fiber to your diet, drinking plenty of water, getting adequate exercise, etc can all help ease constipation.  If those don't help, you can talk to your doctor about trying something like Miralax, digestive enzymes, probiotics, etc, all of which can help ease both bloating and constipation.  Hard stools can also be cause for blood in the stool but that's up to the doctor to figure out.

We don't have any doctors on the site; for a more detailed explanation of the biopsy, you should talk to your doctor.  S/he can explain all the terminology so you understand it.  Ultimately, it's up to your doctor to figure out what's going on.

Since you have some symptoms of hypothyroidism, the thyroid panel and testing for Hashimoto's seems to be the logical place to start - of course, that's just my opinion.   Your doctor may look at your TSH and decide that's not necessary because it's well within the normal limits but as I said, TSH doesn't always correlate with actual thyroid hormones because it's a pituitary hormone AND it's possible that you could have Central hypothyroidism, also known as Secondary hypothyroidism, which means your thyroid works fine, but there's a problem with the pituitary in that it doesn't produce enough TSH to adequate stimulate the thyroid to produce enough thyroid hormones.  This would leave TSH very low with low thyroid hormones.  

There are other things that can cause digestive issues, including, but not limited to celiac disease, which is allergy/sensitivity to gluten which is a protein in wheat, as well as anxiety.  Treatment for Celiac is a complete diet change.  Steps to keep anxiety in check can include meditation, therapy, etc.  
Thank you again for the reply, Barb.  It is relieving for someone to tell me they don't think it is communicable.  I am no doctor, so the only thing I can relate to the constipation is the candida infection (overgrowth) that initiated right when the rest of my initial symptoms did.  From my non-professional research, I have found that candida is a culprit in many cases of constipation, along with bloating.  Again, not a doctor, so I have to take everything I read on the internet with a grain of salt, but it's all I've found so far that makes any sense.  I do take a probiotic and digestive enzymes, and I do believe they help a bit.  

Thank you for suggesting the lab tests.  I will research hypothyroidism to see what symptoms match my own.  I really do appreciate all of your advice.  I will not rule out any kind of autoimmune disease, but I really do feel that whatever I'm dealing with is a direct result of the sexual encounter.  I have/had been healthy my entire life up until that point.

If you can think of anything else you would like to suggest, I would really appreciate hearing it.  Thank you.
I'm no doctor either and I understand that internet research can get somewhat mind-boggling at times.

Were you actually diagnosed with, and treated for, candida or was that something you found online and related to your symptoms?  If you're looking at parasites, H. Pylori is another one that causes very similar symptoms as candida.  It requires specific diagnosis and treatment.

In the event you'd like to go ahead and research hypothyroidism/Hashimoto's, here's a link to 300+  possible symptoms that can be caused by a malfunctioning thyroid.  It includes things that I didn't even realize could be affected by the thyroid, but the thyroid does affect nearly every cell in your body.  It's important to note that one can have Hashimoto's (or other autoimmune conditions) for years without having a lot of distinct symptoms.  

https://hypothyroidmom.com/300-hypothyroidism-symptoms-yes-really/

Along with the information Ken gave you, you have a lot to research, but don't forget to stay on your doctor to get this sorted out.



Hi, Barb.  Sorry, I didn't even see your reply until just now.  Upon my initial exposure, when my scrotum turned red in color, they took a scrape test, and it came back as candida albicans.  I was given fluconazole which took the redness away.  However, some time later after still complaining of symptoms, I was given a candida antibody test that came back positive.  I was prescribed an antifungal once again, but I still suffer from symptoms to this day, some of which are indicative of candida, at least from what I've read online (constipation, bloated abdomen, etc).  

I will be researching hypothyroidism/Hashimoto's with the links you provided, although I still feel like whatever is the cause of my swollen lymph nodes is due to an infection that I received from my sexual encounter.  I will also research the H.Pylori as well.  Thank you for the information.

I really don't think anything will come of me staying on top of my doctor to figure out what is going on.  After wanting clarification from my lymph node biopsy report since there seemed to be some language in it that would indicate something going on with them, then only to hear him tell me they are "benign", I think he believes I am just being anxious and over-worried.  My only other option is to find another doctor, but what will a new doctor do besides what my current doctor did?  He/she will most likely look at the biopsy result and tell me it's "benign and nothing to worry about".  The whole thing is very frustrating and even thinking about it drains me mentally.
Since nothing is obviously showing up, it's come down to a matter of ruling things out.  As auntiejessi has said, STDs can be ruled out because you had protected sex AND you've tested negative, so now it's time to start ruling out other things.  

You can test again for the candida, but you treated for that, perhaps it's time to look at something else, such as the H. Pylori which can produce the same/similar symptoms.

As for your biopsy, Ken gave you a great, detailed explanation of it and basically, it does say it's benign.  It says your lymph node is "reactive", which he and I have both told you means it's reacting to "something" going on in your body.   That something can be anything from an autoimmune condition to anxiety.  Ken and I have both given you several things to research, but ultimately, it will come down to having a doctor who will be willing to do more tests and explain things in a detail you'll be able to understand and live with.  
I understand.  Yes, I understand I've tested negative for all common STDs, so those can be ruled out.  The problem is, these symptoms came right after my sexual encounter.  The gonorrhea, Hep B, and the other unexplained symptoms (including the lymph nodes) all came together, so this feels like much more than just a coincidence.  I am happy and willing to test for anything under the sun including H. Pylori, thyroid-related tests, and any autoimmune-related tests; it just really seems to me that my lymph nodes are swollen as a result of my encounter.

I am going to spend the next few days gathering as much information on H. Pylori, symptoms related to thyroid issues, as well as auto-immune deficiencies.  Ken also mentioned Selective IgA Deficiency, so I'll be looking into that as well.  Thank you for the information and words of encouragement.  I appreciate your input more than I can explain.  It's nice to have someone brainstorm with you and provide suggestions as you have done.
1081992 tn?1389907237
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

"metastatic carcinoma"
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.
1 Comments
Thank you for your comment, Ken.  I appreciate the breakdown of the biopsy notes.  You mentioned in your second paragraph that there may be some activity going on in the node "likely to fight some ongoing infection".  If this is true, is there any way to find out for sure whether this is an existing, present infection?  Or what kind of infection it may be?  

I did have an ultrasound just before my doctor ordered the biopsy.  Sorry, I forgot to mention that part.  The results form the ultrasound, along with the physical examination is what led him to order the biopsy.  

Could you please explain more what you mean when you interpreted the "rare possible follicles" part?  The way I'm interpreting what you're saying is that these cells within the follicles are actively making antibodies BECAUSE I DO have an infection.  Please confirm.  This also, at least in my medically uneducated mind, leaves me feeling contradicted when I read your interpretation on the "no granulomas identified".  If these are not identified in the biopsy, then that would lead me to believe that I am, in fact, NOT dealing with any foreign invaders such as a bacterium, a virus, etc...But then I get to the last part where you suggest that my lymph nodes may be reactive because they are fighting an infection due to my history (sexual encounter).

Sorry, I'm just confused.  I thank you very much for taking the time to explain this to me even though I may need a little more explanation to help me understand.  Sorry to be a pain.

I thought about a biopsy on the blister, but the truth is, it's really not a blister anymore.  It's more like a little scar from where a blister used to be.  I wish I would have gotten it sampled right when it appeared and was sore the first few days.  I've had it for over two years now.   I've had two more in the past, but they did not leave a scar; they just disappeared on their own.  I will also look into the suggestion of late onset Selective IgA Deficiency.  And to answer your question, no, I've never had any lung problems.

Again, thank you so much for your response.  I may not have any definite answers yet, but at least I have people willing to listen and offer suggestions like you, Barb, and AuntiJessie.
1081992 tn?1389907237
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?

1081992 tn?1389907237
"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?
1 Comments
Ken, thank you for the clarification.  Assuming the biopsy indicates that I do have a low grade infection, is there any way to go about finding out what this infection is?

The moment I see another blister on my lip, I am definitely going to request a biopsy.  Thank you for that advice.  Unfortunately, I do not have the results of my ultrasound; I just know that my doctor told me that the results indicated that they look reactive, which is why he ordered the biopsy.  I suppose due to the size/shape of them?  Below is my most recent CBC taken on August 8, 2019.  Any feedback is appreciated.

Component          Your Value            Standard Range

WBC                  8.00 TH/uL      4.00 - 11.00 TH/uL
RBC                  5.47 MIL/uL      4.31 - 5.84 MIL/uL
Hemoglobin 15.9 g/dL                  13.0 - 17.0 g/dL
Hematocrit          46 %                      40 - 50 %
MCV                  95 fL                      80 - 99 fL
MCH                  31 pg                      27 - 34 pg
MCHC                  33 %                      32 - 36 %
RDW                  13.8 %                      11.5 - 14.5 %
Platelet Count      288 TH/uL              140 - 400 TH/uL
MPV                  10.1 fL                      9.4 - 12.3 fL
Nucleated RBCs 0 /100                      0 - 0 /100
% Neutrophils 55 %                      45 - 78 %
%Lymphocytes 30 %                       15 - 47 %
%Monocytes 10 %                       0 - 12 %
%Eosinophils   3 %                       0 - 7 %
%Basophils           0 %                       0 - 2 %
% Imm Grans   0 %                       0 - 1 %
# Granulocytes 4.46 TH/uL               1.70 - 6.80 TH/uL
# Lymphocytes 2.43 TH/uL               1.00 - 3.30 TH/uL
# Monocytes 0.80 TH/uL       0.20 - 0.90 TH/uL
# Eosinophils 0.27 TH/uL               0.00 - 0.40 TH/uL
# Basophils          0.03 TH/uL               0.00 - 0.10 TH/uL

Also, here are a couple other test results:

C-Reactive Protein    <5.0mg/L   Standard Range:  0.0-10.0 mg/L
ESR   3mm/Hr.    Standard Range:  0-12mm/Hr.
TB - Negative
Antinuclear Antibody (ANA Qualitative) - Negative
1081992 tn?1389907237
"...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 ?
4 Comments
Thank you, Ken.  I am going to research the links and other suggestions you mentioned.  I have been tested for Mycoplasma genitalium which came back negative, and I believe LGV, from what I've read can only occur if Chlamydia comes back positive, although I could be wrong.  I have not been tested for Neisseria meningitides, although after reading the symptoms, it does not sound applicable; I would definitely not be opposed to testing for it, however.

Also, I have been taking supplements that are supposed to clear the lymphatic system, including the lymph nodes (it was worth a shot at this point).  I've only been taking them for a week or so, so it's too early to tell whether they are having any effect.  I'm also doing dry brushing and self-lymphatic massages which encourages lymph movement.  Do you know of any "western" medicine that is designed to cleanse the lymphatic system?  In all my research, nothing seems to exist.

Other than that, do you have any suggestions?  I'd be happy to test for Neisseria meningitides or anything else.  I'm just at a point where I don't know where to turn anymore, and I don't know what to do.  The whole process is extremely exhausting.  I appreciate your thoughts.
You keep coming back to this as an STD.

For LGV -

https://medlineplus.gov/ency/article/000634.htm

You had a biopsy of the lymph nodes, correct? It would have shown LGV. You have some of the symptoms, but not all.

No STD lasts for 7 years without either going away or getting significantly worse.

Neisseria meningitidis is a medical emergency. If anyone suspected that, you'd have been hospitalized long ago, very ill.

I'll let Ken and Barb answer your other questions, but really, you are doing a disservice to yourself by focusing on STDs as a cause. You've even tested for MGen, which is a feat in itself, since most docs don't know about it.

You also had condom-protected sex and oral sex, which means a lot of these don't even apply. You'd have to have unprotected sex to get most of these.

Thank you for your reply ,auntijessi.  I completely understand where you're coming from when you say I should stop coming back to an STD as a possible cause of this, but as I told barb above, all of these symptoms came immediately after my sexual encounter.  Also, to put things into perspective, and for what it's worth, I had no sexual contact with anyone else for nearly a year prior to this particular encounter, and I did not have any contact with anyone for over a year afterwards (protected, of course), so this single incident really singles itself out to me.

Thank you for the information on LGV.  Turns out I was wrong; you do not need to have Chlamydia in order to test positive for LGV.  And many of the symptoms match my own.  But you're right, if it was in fact LGV, then surely it would have shown up on the lymph node biopsy.  Not to mention, the antibiotics I took for the Gonorrhea would most likely have taken care of any presence of LGV as well.  I would also think that a bacterial presence would have shown up on a urinalysis, which I have completed and came back normal.

On the MGen, I used a private online testing service and ordered the test myself.

I will continue to research any and all other possible causes, starting with the information that you, barb, and Ken have suggested.  I appreciate all of your help.
As a point of information: Neisseria meningitidis is the name of the bacterium that causes its meningitis. Neisseria meningitidis is not the disease itself. By all means that meningitis is a medical emergency, so you probably didn't have it.  Good luck.
1081992 tn?1389907237
"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.
11 Comments
Hi, Ken.  In my lengthy first post, I thought I had gathered all the information I needed that may be relevant to my situation, but I did forget to mention that my sexual encounter happened in southern Africa with a local woman (for what it's worth, I'm an American currently living back in the States for a number of years now).  I only mention this since you stated in your third paragraph the possibility that this is a "pathogen...from another world region so it's not much known by docs here".  Well, I can tell you this; if it's a pathogen, it's not much known by docs over there either, which is where my tests began.  They test for the exact same STD pathogens as docs do here.

To address your other comments below regarding the night sweats, I recently had a CBC and ESR; I posted the results above.  All is within normal ranges.  

It is not in my nature to give up, but yes, I've come close.  I'm going to research everything you've sent my way and see where I end up.  Also, you have no idea how much I appreciate your comment about agreeing that these issues have been caused by my encounter.  It's nice to not have the people you speak with online, as well as doctors, try to brush it off as "not serious" or "just in your head".  So, I do thank you for that.
Okay, that's a fair statement, Ken, and herpes comes to mind as one that doesn't get worse or go away, so I really oversimplified that statement greatly.

Since I now know that it was in S Africa, granulomas are a possibility, but it still wouldn't account for all of your symptoms. https://www.cdc.gov/std/tg2015/donovanosis.htm

I'm confused about a lot of this. You had condom-protected everything with this woman, but tested positive for gonorrhea. You hadn't had any other contact prior to her for a year. You must have had gonorrhea for a year, because if everything was protected, you didn't get gonorrhea from her.

I'm also confused about the hep B, because if you traveled from the US to Africa, I'm surprised you haven't been vaccinated for hep B. If you tested positive for surface antibodies, you could have been vaccinated for it and gotten that result. You wouldn't have gotten it from her, though, since you had condom-protected everything.

There is something called disseminated gonoccocal infection, or DGI. You have some of the symptoms, but it's not a perfect fit - https://www.healthline.com/health/gonococcemia-disseminated#symptoms

No STD causes bloody stools unless you were infected rectally as a result of unprotected, receptive anal sex.

No STD causes constipation.

You say this happened 21 days after your encounter - medically, that's not necessarily connected. For a syphilis sore, yep, that would be perfect timing. For symptoms of gonorrhea, for example, it wouldn't be. The incubation period for granuloma is 1 to 16 weeks, so maybe.  You'd have to come into direct contact with a granuloma sore. Did she have any sores?

I still don't think this is an STD, and wish you'd keep your mind open - way open - to other possibilities. I've worked with so many people on this site who stay focused on STDs only to find out they have something else entirely, and they end up suffering for far longer than needed.
Thank you, auntiejessi.  First, I think I should clear something up as I believe I worded it poorly in my initial post.  I had condom-protected vaginal sex with this woman.  The oral was unprotected.  This would explain the gonorrhea.  From everything I've read, Hepatitis B generally does not transfer through saliva (although some sources I've read say it can).  This is why I mentioned that she bled on my leg as perhaps that is the way it transferred?  I'm not sure, maybe you can confirm whether Hep B is transferred this way.

I was never vaccinated for Hep B.  Depending on what country you travel to in Africa, you are not required to have certain vaccinations.  There are several other things about Africa that you probably wouldn't want to know, but I'll tell you anyway.  When I was there, you were "required" to have a yellow fever card which indicates that you've been vaccinated for the infection.  Problem is, I know several people who just paid to have the card and never actually got vaccinated.  It's not a good thing, but it's the way some things work in third world countries-money talks.  Why you wouldn't want to just go ahead and get the vaccine that you paid for is beyond me; it's not expensive anyway, so bribing at a lower cost doesn't make any sense either.

Thank you so much for the links.  I will check them out.  

I'm not saying my symptoms were from Gonorrhea, even though I did test positive for it.  All I know is my first symptoms started 21 days after the encounter.  To recap, they were:  pain behind glans in penis (inside, bottom, not exterior of penis), itchy anus/scrotum; scrotum was red in color (swab test shows it was candida), small brown blister on my lip that was slightly painful for a few days then went away.  Then...at week 12, the swollen lymph nodes in my groin and armpits.  Pain in penis went away at around week 13 or so.

I really am trying to keep an open mind.  I am open to all suggestions, and I appreciate you three offering them to me.  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).

Thank you, auntiejessi.  Your participation in this conversation means a lot to me.
Thank you for explaining that. It makes more sense about the gonorrhea now.

Her blood on your leg is not a concern. The skin on your thigh is too thick to penetrate, so her blood wouldn't have gotten into your blood stream.

In theory, you can get hep B from oral sex, though there aren't any documented cases of it.

It sounds like some of your symptoms were gonorrhea, and some were something else. When did you get the treatment for it? I'm assuming shortly after you got symptoms and got tested? The symptoms wouldn't have lasted that long if something else wasn't going on.

Hang in there, ok? I've gone years myself trying to get things diagnosed, and it's so discouraging, I know.

Syphilis can be dormant for MANY years. Then, BOOM, you have a gumma. At certain times in the progression of syphilis,  routine tests can be negative (due to what we used to call the pro zone phenomenon). I can't comment on whether the tests have improved.
I don't know about "improved", since I don't know the time frame your referring to, but his tests 7 years ago, were certainly reliable.

Prozone effect is rare -

https://www.ncbi.nlm.nih.gov/pubmed/8090401

https://www.ncbi.nlm.nih.gov/pubmed/24803377

It could happen, obviously, but I'd doubt 2 syphilis tests would miss the infection. You could always get another one to rule it out.
Thank you both for the comments.  Auntiejessi, then I have absolutely no idea how I would have gotten the Hepatitis B.  I wore a condom, and it did not break during the vaginal intercourse.  I also did not have any other types of risks anywhere even close during this time frame.  Could the Gonorrhea in her mouth have somehow made it easier to pass Hep B on to me orally?  

I was given an antibiotic right away when I first went to the doctor and explained my symptoms and risk factor.  I really had no "typical" symptoms of Gonorrhea as the pain I felt in my penis wasn't anything like I've read online (you can read my description of the pain below in my very last post on this thread).  Either way, you're right, I was/am dealing with something else.

I don't mind getting retested for Syphilis.  I'm up for anything at this point.  I have also been researching more about disseminated gonococcal infection since you posted the link.  You're right; it's not identical to what I'm dealing with, but close in some ways.  

Would you do me a favor and check out the photos I posted on my profile?  Sorry for the blurry one of my lip, but you can make out the small mark left by the blister/lesion that was there a couple of years ago.  The other one is of my left calf.  I got that mark shortly after my initial symptoms started.  Not sure if it is related to this, but thought I'd post it anyway.  It was never painful at any point.

And yes, I am hanging in there.  I appreciate your help and support.
Yes, the prozone phenomenon is rare...but not if it happens to a particular patient.  I had more than two secondary lues in my practice, each with prozone phenomenon, and others who didn't have it. I can't prove it, but I do believe that for L2, the prozone phenom must exceed the approx 1% it's generally accepted to be.

How did at least two secondary syphilitics get to my derm office, you ask? You may know that before political correctness took over, our specialty was called "Dermatology and Venereology,"  or "Dermatology and Syphilology," or other similar "official" sobriquet.

So I was a real pro at recognizing the skin manifestations of syphilis, and demurred when I could to shaking hands. All patients I know of warned me to not shake their hand because they knew they had something there.

I also tried to sneak a peak at their palms before shaking. I also washed my hands a lot.

Further, out of my private office, I offered to have and did, in fact, have a county VD office which I funded and took care of gratis.

I wouldn't dismiss it, but no good way to tell now except perhaps to re-test before potential gumma symptoms/signs.

I assume it was not syphilis, hope that's correct. And what's to stop a person from getting syphilis and gc at the same time? It's not a rare occurrence. And who really believes that condoms are infallible? Not me.

As you know, AJ, not every diagnosis fits into a specific compilation of signs and symptoms. And certainly not every doctor is equipped to deal with much.

In my first class in med school, our professor/doctor apprised the class that 90+% of our patients were going to get better "in spite of" us.  And I do believe he was correct.
Thank you for your comments, Gerry.  I am going to get retested for Syphilis this week just to be sure.  Do you have any other suggestions as to what might be causing my symptoms?  Please do me a favor and look at the two photos I posted on my profile a couple days ago.  The first one is the small brown mark on my lip that started as a slightly tender lesion about 2 years ago.  Tenderness only lasted 2-3 days, then left a mark.  I've had two more of these lesions in the past, but neither of them left a permanent mark like this one did.  Sorry for the poor quality on that photo.  The other photo is a mark on my leg.  It started within a couple weeks of getting initial symptoms (so, I've had this mark for close to 8 years now).  I don't recall it ever being tender or painful though.  Not even sure if it's related, but since it started around the same time as my other symptoms, I figured I would mention it here.

Again, thank you so much for your time and comments.  I appreciate it.
Sorry, Crow. I did look at each of the two pictures. But, as you know, they are poor quality and I can't make anything out of either of them....
I understand, Gerry.  I do appreciate you taking a look.
1081992 tn?1389907237
"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.
1081992 tn?1389907237
"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 :)
1 Comments
:-)
1081992 tn?1389907237
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.



1 Comments
Ok, everyone.  I want to schedule another appointment with my doctor and press him to dig into this more.  My lymph nodes have started to ache a bit more, and I’ve had the night sweats for the past several days (isolated to my lower back).  

I’d like to get all of your input on everything I should tell/ask my doctor.  I’m going to mention the things you’ve suggested here, I.e. the thyroid issues, h pylori, autoimmune diseases, IgA Deficiency, etc.  I’m also going to ask him to take a sample of any blister that may come up in the future (although it’s been about 2 years since my last one).  

Is there anything else I should ask him?  Maybe request an infectious disease doctor?  I’m open to all suggestions.  Thank you all so much.  

Side note:  the lymphatic drainage supplements I’ve been taking for the past few days seem to be making me feel a little drained and fatigued, like a have a “foggy” mind.  It’s the only thing I’ve changed in my regiment, so I can’t pin it on anything else.  

Hope to get some suggestions from you guys.  Thank you.  
1081992 tn?1389907237
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.
1 Comments
Ken, are you saying you think there's a possibility that my nodes are enlarged and painful simply due to fibrosis (I believe you said this term means "scar tissue", correct me if I'm wrong).  I can see that, but would they still be tender/painful if it was just old scar tissue from a possible past infection?

I did actually end up going back to my primary care physician this morning.  Honestly, he wasn't much help himself.  I asked him to explain some of the terminology in my lymph node biopsy report, and I can say that you explained it way better than he did.  He admitted to not knowing what "rare possible follicle" even means.  He is also having me retake the CBC, diff, and metabolic panel testing again.  I also mentioned possible autoimmune disorders, but he said the ANA test I've already taken would have come back abnormal if that was the case.  He was also not interested in hearing about the possibility of a thyroid issue.  I think it may be time for a new primary care physician.

The one good thing I did get out of this appointment though is that he is referring me to an infectious disease doctor (after some encouraging on my part).  It will be about 2 weeks before I can get scheduled in, but at least I'm heading in some direction instead of just sitting here idle.  

I do have a question.  During my searches online this week with the information you guys have given me, I also researched things such as "blood tests to show whether you have an infection".  It led me to immunoglobulins which, to my understanding, are antibodies.  The way I interpret what I read is that, if there is an infection in the body, immunoglobulins will be elevated.  Can you shed some light on this?  Am I understanding this correctly that if I do, in fact, have some sort of infection, it should show on an immunoglobulin test?  If not, are there any other tests that would show the presence of an infection besides the ones I've already taken?

Thank you.
1081992 tn?1389907237
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?
1 Comments
Ken, thank you for the explanation regarding the pain and tenderness I'm feeling in my lymph nodes.  And no, I never knew the node size.  I suppose I will just need to wait and see if the Infectious Disease doctor can find anything out.  Assuming I am suffering from some sort of infection, it is admittedly disheartening to hear that my Ig levels may come back normal.  Can you think of any other type of general testing that would indicate the presence of an infection?  

Thank you for the suggestion on a Diagnostician.  Last night, during my research on some of the things you mentioned in your post, I also researched Diagnosticians near me, and found one that came with very high reviews.  

As for the blister on my lip, I've had some theories of my own in my research over the years.  In my opinion, whatever primary infection I suffered/am suffering from caused a gut flora imbalance.  This would explain the candida overgrowth on my scrotum, and I would assume the candida is what was also causing the anal itching.  Although I never was tested for thrush, I believe this flora imbalance affected my entire GI tract, including my mouth (I did have a white-coated tongue early on shortly after my initial symptoms began).  The blister may be a manifestation of the candida overgrowth.  I also believe I still have a gut imbalance, whether it's due to candida or gut bacteria, and this is what is causing my constipation and other digestive issues.  This is all just my medically-uneducated theory however.  I have had a total of (3) blisters.  They are a bit sore for a few days, then lose their soreness, then eventually disappear, except for the one that left a mark on my bottom lip.  The first one came at the exact same time that I felt the anal itching and pain behind the glans in my penis.  I remember that part perfectly; it's like they were all within minutes of each other.

In short, I believe a pathogen (besides the Gonorrhea that I was diagnosed with) entered my urethra, and I remained symptomless for 3 weeks.  Upon the third week, this pathogen caused my prostate to become inflamed which is what caused the pain behind my penis glans.  At the same time, it also affected my GI tract causing a gut flora imbalance, which caused the candida overgrowth.  I don't believe I "caught" the candida from the encounter; I believe it is/was a secondary ailment as a result of the primary infection.  Again, this is just a theory I came up with in my attempt over the years to try to make this situation make sense.

I did look in to the link auntijessie posted above on DGI.  Although I agree with her that it is not a perfect fit, I do have some of these symptoms and it would make sense because I was diagnosed with Gonorrhea.  This may be worth looking in to.

One last thing; is there any way we can post pictures on here?  If so, I could post a photo of the small blister on my lip.  If not, during my research last night, I found a photo of a blister that looks identical to mine.  If you scroll down to "Images", it is the very first photo (Figure 1) that shows a small brown dot on the man's bottom lip:  http://www.pcds.org.uk/clinical-guidance/melanocytic-macule#!prettyPhoto

Sorry for the lengthy post.  I was just sitting around last night researching all the suggestions I've been getting from you guys, and this post is basically a summary of all the things that were popping up in my head as a result.  I know I've said this several times, but you guys really have no idea how nice it is to have you giving me advice, suggestions, and support.  Obviously, it's impossible to diagnose things over the internet, but it sure helps to get ideas from other people who are much more educated in these subjects than myself.  I appreciate all of you very much.
1081992 tn?1389907237
'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.
1081992 tn?1389907237
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


1 Comments
Thank you for the information on posting photos.  I will get that added to my personal page later on today.  I should note that the candida was diagnosed prior to any antibiotic treatment.  They took a scrape test from my scrotum at the same time they took a urine sample.

Do you have any other comments on my post above?  I would appreciate some feedback on my theory as to what might be going on.  Thank you.
Avatar universal
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.
Avatar universal
Hope everyone had a great weekend.  Does anyone have a response to my recent comments above?
1 Comments
Honey do some research on Crohn's disease!!!!! I've been dealing with the endless random symptoms of this debilitating  disease most of my life going on 20 years diagnosed and probably 15 years of symptoms before diagnosis! Look at all possible symptoms and side effects not just what people assume the "norm" is! Crohns of the small bowel is not seen on a colonoscopy and I can't tell you how often my blood work would come back in the "normail" range but I could still be incredibly sick and headed for another surgery. The blisters can definitely fit, all your digestion issues, swollen lymph nodes and autoimmune disease make it so much easier for any infection to take hold in our body. I've been a guinea pig for a world renowned GI doctor at Mayo clinic these last 20 years and they have discovered and correlated so many random symptoms to the disease through all the studies and drug trials. Also more often than not if there is one autoimmune disease at work there is more. It's always great to hear "WOW, I'VE NEVER SEEN THIS BEFORE" so many times from one of the world's leading medical facilities lol
Avatar universal
I
1081992 tn?1389907237
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.
1 Comments
Thank you, Ken.  Wanted to let you and the other know that I have an appointment scheduled with an Infectious Disease Specialist on April 6th.  I honestly don't know how much he will be able to help me since it seems all of my blood tests are completely normal.  I will take him a copy of my report of my lymph node biopsy, as well as present my ongoing symptoms to him.

I tested negative for Trich last week, so that's ruled out as well.  I also took a PSA and Candida antibody test, and both of them came back negative.  

I am still waking up at night with mild night sweats.  The dampness is mostly isolated to my lower back.  This has been going on for the past couple of weeks.  This symptom comes and goes.  I will not have any sweats for weeks, or even months, at a time, then I'll start getting them, and they'll last anywhere from a few days to several weeks.

I will report any findings from my visit with the Infectious Disease doctor.
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