Ok, doctor, what's next?
August 31, 2019 9:14 AM   Subscribe

YANMD, but maybe you can help me talk to mine. I've been sick almost a month, and doctors keep flip flopping between two possible diagnoses without a plan for if things don't get better. Their theories could be right, of course, but I'm here for ask help with the language to talk to them what's next--I'm barely leaving the house, struggling with my freelance work, etc. Please refrain from trying to diagnose me, and please also refrain from giving me longer things to read; can't do that right now.

I recently posted this ask about an ongoing virus. My doctors seem to be wavering between that theory and a sinus infection theory. I'm six days into my third antibiotic for the latter, and the only thing improved is a sore throat.

I don't just want to keep trying a million antibiotics.

Wrote my doctor yesterday to say I wanted a plan if I'm still sick in a week. She responded that my latest diagnosis was a sinus infection, and that would explain symptoms. No mention of my actual question.

While I don't know what more can be done, I know I'm not satisfied with the answers I've been getting. What are some ways I can pin down a strategy? I've explained how this is affecting my life, how I'm unable to bring in income, but I still haven't found the magic words to at least chart out a course of action after a month of sickness.

I have not yet been to the ER--in your experience, would they be able to do any tests that might help get to the root of this?

Again, this is a medical self-advocacy question, not a diagnostic one, so I'd appreciate speculation on what I have. (Feel free to PM me if you've been in a similar situation though.) And I know there are books and articles on this--I have some--but I'm not able to read very much right now.
posted by mermaidcafe to Health & Fitness (13 answers total)
It is possible to test for both mono and lyme too early, before your body builds up sufficient antibodies. I would ask to be tested for both again. If you test positive for lyme, then you'll need to keep taking antibiotics, but if you have mono you'll know that you just need more time to recover. Or maybe you'll be negative for both, but at least you'll have a more definitive answer.

I had something similar happen to me last summer, though in my case my doctor refused to run any bloodwork at all and kept just giving me antibiotics for a "sinus infection." I finally got a second opinion, demanded a blood panel (this was 8 weeks into sinus/lymph infection/general weakness issues with escalating heart palpitations by this point) and tested positive for both Lyme and Epstein-Barr antibodies.
posted by PhoBWanKenobi at 9:24 AM on August 31, 2019 [9 favorites]

It sounds like you’re being a good advocate for yourself; going to the ER will cost you $$$ and get you a referrral to your existing doctor. Continuing to be sick isn’t a sign that you need to self-advocate better; sometimes it is just a sign that you’re sick. Definitely follow up in a week, and if you’re not better, consider seeing an(other) internal medicine specialist.
posted by chesty_a_arthur at 9:28 AM on August 31, 2019 [3 favorites]

More succinctly: assuming your symptoms are still there, call and make an appointment for the day after your antibiotics end. I would just go in, plainly explain your symptoms, and say you'd like bloodwork done again because you're not seeing any improvement. Be firm and plain in that you're still sick and things haven't gotten better.
posted by PhoBWanKenobi at 9:30 AM on August 31, 2019 [2 favorites]

I once went to the ER for stomach pain, and they did basically every test they could on me. This is in Boston where the hospitals are pretty comprehensive, so it might vary based on the hospitals near you, but you may have luck going that route. I did have to pay the $100 co-pay, and they didn't come up with anything, but I felt better knowing that I didn't have any terrible thing.

Are you seeing your regular general practitioner doctor? If so, I would ask for a referral to an ear, nose, and throat doctor- they might be better able to diagnose what is going on. Depending on where you are, there might be a hospital that has a specialty in this area, and if so, I would go to that hospital's ER if you feel like you can't wait.
posted by momochan at 9:33 AM on August 31, 2019

I agree with the idea that the best thing you can do is ensure you're being referred to specialists. If you aren't seeing an ENT then get that referral.

Perhaps also advocate for a CT scan. I had lethargy and a persistent fever a few years ago. Went to a GP, an ENT, and an infectious disease specialist. The last one asked for an abdominal CT scan almost on a whim, and that unearthed the rampant intestinal inflammation that was the real problem. I didn't have any traditional symptoms of Crohn's, but that's what it was.
posted by Pacrand at 9:41 AM on August 31, 2019 [1 favorite]

You mention in past questions being exhausted by Metformin and separately by an antibiotic. In your question about this ailment you mention that exhaustion is the main symptom (what are the other symptoms?). Are you sure this isn't related to some medication that you're taking now? Also, could depression be a contributing factor?
posted by pinochiette at 10:19 AM on August 31, 2019

*pinochiette, neither of those are a factor. I appreciate your considering it, but I asked that this be kept an advocacy question, not a diagnostic one.
posted by mermaidcafe at 10:41 AM on August 31, 2019 [1 favorite]

I know you want advocacy advise not diagnostic but perhaps you've advocated too much. 3 rounds of antibiotics in what sounds like the space of a couple of weeks? And they've no clear diagnosis or evidence of a bacterial infection?
Severe fatigue is not an uncommon side effect of several antibiotics. Its fairly well established that the bacteria in your gut can have an incredible effect on how we feel.

Viruses can absolutely cause fatigue lasting longer than 2 weeks, if you add to that antibiotics for an infection that you don't have, feeling really shitty is not unexpected.

I would finish the antiobiotics that you have, then get a really good probiotic and take that for week along with lots of water and as much rest as you can manage (I know you've got to make a buck and at this point probably can't afford just to curl up in bed all week). If there is no improvement then go back to the doctor and be clear that you're not taking any more antibiotics without a proven diagnosis and ask for more tests. If they refuse and just fob you off with this sinus infection theory, find new doctor.
posted by missmagenta at 11:18 AM on August 31, 2019 [10 favorites]

(I also note that you suffered from extreme fatigue earlier in the year due to antibiotic use)
posted by missmagenta at 11:23 AM on August 31, 2019

I wouldn't advise an ED in this kind of situation -- they will rule out anything along the lines of "imminently dying" and then refer you back to your regular doctor.

It sounds like you have been a good advocate for yourself, especially in making it clear how much this impacts you. If you have not seen an infectious disease specialist, though, that would probably be helpful. You still may not get a definitive answer, because viral fatigue is definitely A Thing,* and the recommendation is just ... rest. Which I realize is frustrating. But in terms of making a plan, I'd ask your doctor what their threshold is for referring to ID.

* Most sinusitis is viral, too, so I'm not surprised you haven't improved with antibiotics.
posted by basalganglia at 12:18 PM on August 31, 2019 [2 favorites]

Quick note on an earlier comment: Please don't use probiotics after taking antibiotics. Recent research shows that that's actually a harmful thing to do. The tl;dr is that the bacteria in the bottle are the wrong ones, and you need to allow time for your original stock to grow back.

As to the original question: I'll nth the idea that you should get a second or third opinion, from an ENT if you can. Telling the next doctor "This doesn't feel right", and "I need a plan of action" will hopefully trigger responses that will be positive for your case.
posted by Citrus at 1:02 PM on August 31, 2019 [1 favorite]

I don't think your doctor is going to want to give you a plan now for what should be done if you're still sick in a week. Coming up with the plan is work and it's work that may not be needed, since you don't know yet that you won't feel better in a week. And she doesn't yet have all the information she'll need to make a good plan. "Still sick" can mean a lot of different things - no change at all, getting worse, better but not completely cured, or better in some ways and worse in others. It's possible that a week from now some of your symptoms will have gone away. It's possible you'll have new symptoms. The plan is probably going to depend on all those variables.

I think the most you can expect her to do right now is tell you how long she thinks you need to wait to tell whether the antibiotics are helping. Wait that long and then ask her for a plan or a referral (or find another doctor on your own) if you still need one.
posted by Redstart at 1:15 PM on August 31, 2019 [1 favorite]

Pm sent.
posted by Jubey at 3:43 PM on August 31, 2019

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