Dealing with a bunch of symptoms: rash, sun sensitivity, swollen lymph nodes, headaches, and stomach

That’s for the urine test.

Now, look—you could be looking at some insignificant proteinuria caused by just having a fever. It might not even be a big deal. Why don't you have your primary care physician run a follow-up urine test while you're actually feeling okay? If they do find protein in there, then—and only then—will you need to go through the whole ordeal of a 24-hour urine protein collection to get the full picture.

Honestly, those lab results from 2011? They don't tell us anything useful at all.

I think we're looking at the CRP levels in the bloodwork—from what I can see, his was sitting at 53.2, while the normal range is usually just 0.0 to 5.0

Also, does anyone know what proteinuria actually means?

CRP is up in the bloodwork, and there are proteins showing up in the urine.

The relationship between the SE and CRP doesn't quite line up for an acute infection, if you ask me.

Has a specific serum protein electrophoresis been ordered yet?

Kate Collins67 said:CRP is in the blood, and proteins are showing up in the urine.

That ratio between ESR and CRP seems a little off if we're looking at an acute infection...

I’m honestly not sure what to make of it—when I first checked into the hospital, my levels were at 1.7, and back then the doctor mentioned they suspected two different, unrelated conditions.

Unfortunately, my medical knowledge is pretty much zero, so I just have to rely on the doctors to interpret these labs and hope they can give me some actual answers...

By the way, what exactly is ESR?
Thanks so much for the help!

I just realized there are values for the urine work too, so I'll go back and edit my post from July 3rd—when I was at the hospital—to include those.

http://www.aafp.org/afp/1999/1001/p1443.html
This link breaks down exactly what SE is—give it a read.

Did they actually specify which two diseases they were talking about, or was it just some vague, general statement?

So, did the Bartonella test come back positive or negative? And more importantly, have you been running a fever lately?

According to this:

It looks like we're dealing with two separate issues here—the fever and headache, which could potentially point toward early-stage serous meningitis (likely viral), alongside some acute cervical lymphadenitis...
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They've actually ruled out the possibility of meningitis through a spinal tap.

Generally speaking, you’ve got two ways to play this. First, you can have your primary care doctor refer you to an immunologist and just follow whatever path they decide is best. The second option—and honestly, if you start running a fever again without any obvious explanation—is to just head straight to the ER at a major university hospital like Mayo Clinic. If you do that, you absolutely have to make sure you mention the butterfly rash and those swollen lymph nodes you dealt with earlier. With any luck, they’ll end up admitting you to the rheumatology or clinical immunology ward, and then you can finally get some answers. Because look, if they can rule out an autoimmune disorder, you can finally stop stressing about it.

While you're stuck waiting for all those appointments to happen, if I were in your doctor's shoes, I wouldn't be sitting around. I'd be ordering a serum protein electrophoresis, immunoelectrophoresis, repeating a CBC, checking fibrinogen, urine analysis, 24-hour urine protein, lupus anticoagulant, anticardiolipin antibodies, and C3 and C4 levels right now.

If you run another fever and can't get hold of an immunologist immediately, you should at least get your C3, C4, and total complement levels checked alongside your routine labs.

I’d like to touch upon the points regarding the headaches, the neurological exam, the EIA, and the Carbamazepine.

Dear restlessangler, there is a specific category of headaches known as dysrhythmic headaches. These can manifest in various ways—typically resembling migraine patterns—but they carry one distinct hallmark: abnormal findings on an EIA (usually involving dysrhythmic changes). If all imaging results come back clear, we classify this as a primary headache.

Unfortunately, science still hasn't provided a definitive explanation for why these headaches occur. That is likely why you haven't received a concrete answer to your questions about the underlying cause. What we do know is that these headaches often respond remarkably well to medications from the anticonvulsant class. That is precisely why Carbamazepine was prescribed. Patients are sometimes confused, wondering why they are being given such a medication if they haven't been diagnosed with epilepsy. However, an epilepsy diagnosis isn't a prerequisite for this treatment; these drugs are utilized for various other conditions as well.

Whether the headache is a symptom of an underlying disease or a standalone issue doesn't change the clinical approach much. From a treatment standpoint, the goal remains the same: if standard analgesics fail and there is a dysrhythmic finding on the EIA, we move to an anticonvulsant.

Generally speaking, I agree with Kate Collins67; seeing an immunologist is essential. It would also be wise to complete some diagnostic testing while waiting for that appointment.

Furthermore, the facial rash shown in the photo looks somewhat atypical for seborrheic dermatitis. It wouldn't hurt to seek a second opinion from a dermatologist.

Regarding the lymph nodes—are they still swollen?

Best regards. 🙂

Kate Collins67 said:Generally, you have two paths here. You can have your primary care physician refer you to an immunologist, and then follow their lead from there. The other option—if you run a fever again without any clear cause—is to head to the ER at a major hospital like Mayo Clinic. If you do, make sure you definitely mention that butterfly rash and the swollen lymph nodes you had earlier... if luck is on your side, they might admit you to the rheumatology or clinical immunology ward, which would get things moving. Once they rule out an autoimmune issue, you can finally stop worrying about it.

While waiting for all that, if I were in your doctor's shoes, I’d go ahead and order a serum protein electrophoresis, immunoelectrophoresis, repeat a CBC, fibrinogen, urinalysis, 24-hour urine protein, lupus anticoagulant, anticardiolipin antibodies, and C3 and C4 levels.

If a new fever hits and you can't get in to see an immunologist right away, it would be smart to check C3, C4, and total complement alongside your routine labs.

Thank you so much for this... I'll talk to my doctor and we'll see what happens next.

Maria Fisher46 said:I’d also like to touch on the part regarding the headaches, the neurological exam, the EIA, and the Carbamazepine.

Dear Angie, there is actually a specific group of headaches known as dysrhythmic headaches. These can present in various ways—usually appearing as migraines—but they carry one distinct characteristic: abnormal findings on an EIA (most often in the form of dysrhythmic changes). If your imaging comes back normal, then we're looking at what's called a primary headache.

Unfortunately, there isn't a complete scientific understanding yet of why these headaches occur, so you might not get a definitive "why" when asking about the root cause... What we do know is that these types of headaches typically respond very well to medications in the anticonvulsant class. That’s why you were prescribed Carbamazepine. It can be confusing for patients to wonder why they're being given that kind of medication if they haven't been diagnosed with epilepsy, but you don't need to have epilepsy to be prescribed it—it's used for several different conditions.

Now, whether that headache is eventually linked to another underlying illness or is just its own standalone thing, doesn't change much in terms of treatment... since the meds are the same. If standard painkillers don't work and there's a dysrhythmic finding on the EIA, the move is to try an anticonvulsant.

Essentially, I agree with Kate Collins67—getting an evaluation from an immunologist is vital, and it would be wise to get some of those tests done while you wait for that appointment.

I still feel like that facial rash, based on the photo, isn't quite typical for seborrheic dermatitis, so it wouldn't hurt to get a second opinion from a dermatologist.

As for the lymph nodes—I'm not sure if they're still swollen or not?

Best regards. 🙂

I didn't give you the whole story... :S

After my neurologist referred me for a follow-up EIA, I actually stopped seeing him altogether. My primary care doctor was the one who ended up prescribing the Carbamazepine—though, from what I gather, not everyone agrees on that approach. We started with a ten-day trial at half a 200 mg tablet, and once I felt things improving slightly, I moved up to the full dose.
My doctor told me not to stress too much when reading the medication descriptions, and I also found out that Carbamazepine is sometimes used for headaches as well.

What I'm wondering is... if my first EIA showed "dysrhythmic" patterns, why didn't we try the Carbamazepine back then? Or even after the subsequent tests? On the second test, it mentioned in parentheses that such a finding could actually occur in a perfectly healthy person.

Even though I told the neurologist that I’ve already tried everything from Advil and Aleve to Tylenol and Excedrin—some worked sporadically for maybe a month before stopping altogether—he kept suggesting new stuff like Indomethacin or Aleve.

And then there are the lumps...

So, those ones under my right ear cleared up around the ninth month, but they actually came back about a week ago—and now, if I touch them, I can tell they're a little tender.
The one under my armpit has been there for seven months now and just won't go away.

It’s really not in my interest to be sick, which is why I want to get this sorted out. I honestly don't understand how any doctor could look at lumps that have stayed enlarged for more than a week or two and say it's nothing or that I don't need a biopsy.
Look, I'm no doctor, but that's just how I see it. I told him I'm afraid to play sports, and honestly, I'm even afraid of working too hard lately—even though I've been overworking myself recently—because I'm scared my immune system is shot and I'll end up stuck in bed again.

Thanks for checking in, Nicholas Myers,

Best,

The thread has drifted down to page two.

Regarding the introduction of Carbamazepine: given that standard painkillers haven't done the trick, moving in this direction seems both logical and justified. If you tolerate the medication well and see an improvement in your headaches, then it was a smart move. Generally speaking, when dealing with headaches, the protocol is to start with analgesics—moving from milder to stronger options—before pivoting to other drug classes if those fail (for instance, switching to triptans for migraines or anticonvulsants for dysrhythmic headaches). It’s essentially a progression from "simpler" to "more complex" treatments, if I may use a crude analogy, though where one drug sits on that spectrum is always subject to debate. Let's not get bogged down in semantics, though.

An abnormality in an EIA doesn't inherently signal pathology; the person interpreting the results is correct there. However, when paired with your specific headaches, it provides enough evidence to support a diagnosis of dysrhythmic headache, which your primary care physician seems to have identified accurately.

You should definitely follow up with your doctor regarding the suggestions made by Kate Collins67 (specifically the testing and the immunology consult). Your physician also needs to check your lymph nodes, as the hematologist advised, and if they remain persistent for this long, a biopsy should certainly be performed.

I hope you find some answers soon.

Best regards. 🙂

I’m going to jot down some recommendations for myself—I'm heading to see my primary care doctor after work tomorrow, so we'll see how it goes.
She's been monitoring my lymph nodes, and based on her suggestion, I decided to get a second opinion.
I'm actually a little unsure about the process, though... I know there are certain tests a GP just isn't authorized to order, so what about a lumbar puncture? Can she even request that directly, or does it have to come from someone else?

And regarding the referral for the hematologist—my doctor checked my lymph nodes twice (once when I first mentioned they weren't "going away," and again ten days later when they still hadn't settled down). Based on her findings, she sent me to a hematologist, who basically told me it was nothing—just some connective tissue under my armpit. Even though the ultrasound showed exactly how large those nodes were...

Anyway, I'll update everyone with the details tomorrow. I have a feeling I'll be coming back here with a whole stack of referrals in hand... 🙂

I was just sitting here thinking—they ran those serology tests for Bartonella and Toxoplasma for you through the outpatient clinic, right? But what if you're just stuck waiting on those results for another week or two? Have you actually seen the findings yet? Because, look, if they aren't already written down in your chart, it means you're going to have to call them up and track them down. If you already have the results in hand, then just ignore me.

Kate Collins67 said:I was just thinking—they did those blood tests for Bartonella and Toxoplasmosis for you at the outpatient clinic. But what if those results aren't ready for another week or two? Have you actually seen them yet? If they aren't in your records, you might need to call the hospital to pick them up... though if you already have them, just ignore this.

I got them about ten days later. I first went to the ER on July 1st—that’s when they ran the tests for Toxoplasmosis and everything else—then I went back on July 3rd, and finally had my follow-up on July 10th where I picked up the results 🙂

I should mention that my headaches have been acting up more frequently lately—just over the last week. It's not like they're unbearable, but I've been taking some Tylenang effervescent just as a precaution, which helps a little bit...

You can get a referral for a lymph node biopsy directly from your primary care physician; I don't believe you need a hematologist's sign-off for that specific test.

Regarding those headaches—what are we actually looking at here? Is the pain dull or sharp? Does it throb, or is it more of a steady, constant pressure? Where exactly is it hitting? Is it bilateral, or just one side? How long does an episode last, and do you experience any warning signs beforehand? Also, are you dealing with nausea, light sensitivity, or sound sensitivity while it's happening?

Can I ask something? What does a hematologist have to do with swollen lymph nodes anyway?

Lymphoma—lymph nodes—hematologists. In the US, we usually see lymphomas and leukemias handled by hematologists rather than oncologists, though I can't help but wonder if there's a push to eventually shift all of that over to the oncology side of things.

Thanks for the reply. 🙂 I had no idea that fell under their jurisdiction.

Maria Fisher46 said:You can actually get a referral for a lymph node biopsy directly from your primary care physician—I don't think you necessarily need to wait for a hematologist to sign off on that specific test...

So, what are these headaches actually like for you guys? I'm curious about the sensation—is it more of a dull ache or a sharp, stabbing pain? Does it feel like a constant pressure, or is it more of a pulsing thing? Also, where exactly do you feel it? Is it just on one side, or does it hit both halves of your head? I’d also love to know how long an episode usually lasts... and if you get any warning signs right before the pain kicks in. Do you deal with anything else while it's happening—stuff like nausea, or maybe being super sensitive to light or sound...?

Here I am...
I had a little sit-down with my GP today... just caught up with her for a bit...
I mentioned her visit to the hematologist and how it went—but once she saw the doctor's name, she just let out this huge sigh... So, yeah, I'm definitely going to get a second opinion.

I showed her the list of tests that Kate Collins67 suggested—thanks again for that, by the way—and she was totally on board with it...

For now, we're starting with some urine tests and blood work—plus getting a second opinion from a hematologist—so we’ll take things one step at a time from there...

It’s hard to pin down exactly what it feels like—it’s mostly just this dull ache, though sometimes there’s a sharp, stabbing sensation that comes and goes... it isn't constant, but I can definitely feel it "moving" through my head. Most of the time, though, it stays pretty dull...
It feels like it’s hitting both sides of my brain. Sometimes it kicks off in my neck, other times it’s right at the top of my head—or maybe somewhere near my ears, moving toward my temples... There isn't really a pattern to when it starts or what triggers it. It’s just this constant pain—I can feel it there all the time...
When I get a headache, I don't really deal with much light or sound sensitivity...
To be clear, I don't really deal with that whole "can't fall asleep" struggle... that's not my issue. Usually, when I feel a headache starting—which doesn't happen nearly as much now that things have stabilized with the Carbamazepine—I know exactly what to do. I just head to bed, settle in, and try to nap for maybe thirty minutes or an hour... but it feels a bit futile. I always seem to wake up with the exact same headache, and then, just a few minutes after I actually get out of bed (or even if I stay lying there...), the pain starts all over again...

All I really know—and I assume this might be the case for everyone here—is that whenever I hit a sudden spike of stress or a flash of anger, I get this sharp, localized pain in my head... it’s right between my temple and my ear, tucked under my hair. It passes pretty quickly, though, so I haven't been able to draw any real connection between that sensation and what I've been struggling with lately...

It sounds like your primary care physician is quite level-headed and has managed to connect some important dots.

The headaches you're describing seem to share characteristics with tension headaches. These can often overlap with other types, including the ones you're managing with Carbamazepine. Stress, frustration, poor posture while working, and general physical tension are all major contributors here. Taking acetaminophen is a sensible move.

Hopefully, the upcoming test results and a second opinion will provide the clarity you're looking for.

Best regards. 🙂

Maria Fisher46 said:It sounds like your family doctor is quite sensible—she seems to have a good grasp on things and has made some solid connections here.

The headaches you're describing seem to have elements of tension headaches, which can often overlap with other types... including the ones you're treating with Tegretol. Stress, frustration, poor posture while working, physical tension—all those factors definitely play a role in triggering them. Tylenol is usually a decent choice for relief.

I really hope those new test results and the second opinion help clear up everything you're wondering about.

Best regards. 🙂

She really lucked out finding a doctor like that.

It sounds like I have all the right ingredients for tension headaches then... 🙂 But what about taking Tegretol long-term? Someone mentioned they've been on it for years without any issues, but on the flip side, I read somewhere that it can be hard on the liver (if I remember correctly)...

For now, I'm just waiting to get these tests sorted out, and then I'll update everyone.
A huge thank you to you and Meritas for all the medical insight and advice you've shared.
I truly appreciate it!!

I'll check back in soon (hopefully not too long of a wait 😉)