Galaxy-Brain Hobo Antibiotics?
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I do not know real medical answers to this question. However I have some out-there ideas which could be tried in a way with low risk of making things worse, and some small chance of making things better.
First the worst idea -- labyrinthitis is commonly diagnosed by MRI. It's not cheap -- probably costs a couple thousand bucks -- but you can get an elective MRI of your head if you really want to see what's going on in there. That's not a great suggestion for your case because you're looking for cheap. But if you get imaging on your own and it shows abnormalities, it could be a good lever for demanding that doctors take you seriously.
Second, consider simulating fever. Some bacteria which like normal body temps stop working right at higher temps that are still low enough not to damage the human. If you have no other contraindications to spending as long as you can tolerate in a sauna as frequently as you can for awhile, it could be worth a try. Just be careful to know the signs that you're getting other harm from excess heat, and cut back if you notice them.
Third, have you noticed any change in symptoms when taking antihistamines for other reasons? I agree that bacterial infection is the likeliest cause, but there's some chance that inflammation mimicking infection can be due to inappropriate immune response to stimuli that would be harmless otherwise. If you're not already on antihistamines for allergies and you have no known reactions to them, it could be a good data point to determine whether OTCs like cetirizine make any difference in subjective symptoms.
Fourth and perhaps silliest, have you tried reframing the "getting doctors to take this problem seriously" as a social engineering challenge, and prompted Claude (preferably Opus) to strategize with you for how to tell the truth from the specific angle that causes medical professionals to pay attention? You shouldn't have to do this, but the medical system is a mess, and roleplaying your doctor conversations with a bot who can highlight anything you say that decreases your credibility from a health care provider's perspective may help you change your interactions with them in a way that changes the outcomes.
you can get an elective MRI of your head if you really want to see what's going on in there
Ha, I've been trying to get my head scanned for four years. Haven't even come close to getting anyone to take me that seriously. Thank you, though.
Second, consider simulating fever
. . . Huh, that is a new one to me, thanks! I've been hanging out in the heat recently, so that's convenient. I'll see if it improves anything.
have you noticed any change in symptoms when taking antihistamines for other reasons
I'm actually taking certrizine, too, because I was pr...
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Try it anyways. A quick grep in the links you provided suggests there may be some tricks like specifically requesting the differential diagnoses that you may not yet be using (or you're using them and not mentioning it, can't tell from here). From my perspective, the "Haven't even come close to getting anyone to take me that seriously" earlier in your post suggests that more dakka in the social engineering for being taken seriously department may still be appropriate.
Getting a referral may be harder than pursuing the options for it which are available without a referral. It's doable, albeit expensive and annoying, without a doctor's recommendation for it.
If certrizine is the only antihistamine you've tried, it may be worth cycling through all available OTC alternatives to it while carefully tracking symptoms before ruling out the whole class.
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I don't know what you mean by "specifically requesting the differential diagnoses". Care to elaborate?
I just had a conversation with an urgent care doc. I told the office I had a new ear infection, so they wouldn't look at my previous doctor's notes saying I'd been "somatizing" the ETD, and in the hopes that letting them come to the conclusion themselves would prevent them from having an allergic reaction to a patient's "self-diagnosis".
That worked, insofar as the doctor said he saw inflammation in my nasal passages and lymph nodes that looked like ETD. He explained what that was, and said I should try a nasal steroid. I said I'd tried two kinds [ Flonase and Nasacort ] and I'd been taking them for seven months, and the problem just kept getting worse. He said I should try a third kind of nasal steroid. I asked if I could try an antibiotic. He said no, he hadn't seen any signs of infection, and thus he couldn't conscion the risk of antibiotic resistance. I begged as sanely-sounding as I could. I said "I don't have allergies [ that could be causing the ETD ]", but he didn't seem interested in determining the cause of the ETD in the first place. He said no three times to my request to try an antibiotic, and repeatedly said "Steroids are the treatment for ETD".
I now have a follow-up with my new GP on Thursday. If you know magic words I can say to make that go better, I give you the floor.
I genuinely do not have the money at the moment to get my head scanned or pursue other options without a referral, unfortunately.
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asking about differential diagnoses is the doctor-ese way of saying "ok if it's not what you think, what else are we considering as possible explanations?" which opens a conversation about whether it's appropriate to also test for those alternatives. Differentials should include the unlikely stuff as well as the likely stuff, and using the professional terminology can signal that you're capable of understanding that it's probably a likely thing but could be an unlikely one.
and if you end up in that same conversation about "no signs of infection", definitely inquire what signs would be externally perceptible. had he been able to actually examine the affected tissue and culture for bacteria, or was he just guessing?
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No tissue samples, just external examination. Not even bothering to guess at a cause. "ETD -> use steroids to treat".
If the new GP acknowledges that I have signs of ETD and that it must be caused by something, and that something is probably not allergies [ otherwise the steroids plus azelastine plus certrizine would likely have done anything long-term, and/or I would have any other signs of seasonal allergies to speak of ], that'll be mission accomplished. So I'm trying to brainstorm ways to force him to acknowledge that syndromes have causes, which is not a standard most doctors I've ever talked with in this great state of Iowa have met.
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I hope it went ok!
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Update: The new GP took one look in my ear and said, and I quote, "You have a lot of . . . infection!"
And was baffled that urgent care hadn't given me antibiotics.
I imagine it had gotten significantly worse over those few days [ it had subjectively ], as I hadn't been able to stay supplied with garlic.
I'm now on doxycycline 200mg/day; Google says ear infections are usually caused by Streptococcus pneumoniae, and that this strain in America is resistant to tetracyclines around 1/5 of the time. But new GP said if it didn't work to come back and he'd try something else.
So barring further complications I seem to finally be in the clear.
New doc has been in the area for a while but doesn't look/talk like he's from around here; I would hazard a guess that's why he was a lucky roll.
For amusement, I threw the contents of your google doc at Opus and asked it for questions from the perspective of complimentary medicine. Below I have cherry-picked the ones I found interesting:
- Any experience with lymphatic drainage massage, especially around the neck and ears?
- Experience with acupuncture or acupressure for ear/sinus issues?
- Have you tried nasya (nasal oil application) with sesame or specific medicated oils?
- Any yoga practices, particularly inversions or specific pranayama (breathing exercises)?
- Use of neti pot with specific salt ratios or herbal additions?
- Differences when traveling to different climates or altitudes?
- During the periods where symptoms abated, what else was different (diet, stress, location)?
- Have hot showers, steam, or saunas provided any temporary relief?
- Any positions (lying down, head tilted) that change symptoms?
- Have you noticed any neck or jaw tension that preceded or accompanies the ear issues?
- Any history of teeth grinding or TMJ problems?
- Do you hold stress in your shoulders or upper body?
- Any changes in your breathing patterns since this started?
- How much time do you spend in air-conditioned or heated environments?
- Do you notice symptoms changing with humidity levels, not just pressure?
- Do you notice the symptoms worsen with certain foods (dairy, cold foods, raw foods)?
- What's your sleep pattern like? Do symptoms change with sleep quality?
I do not have great personal interest in the answers to these, but reflecting on them might highlight relevant patterns to add to your collection of documentation on the condition.
