[netaustin]

I contracted Lyme disease while on vacation in Cape Cod last year. The first symptom was left-side facial paralysis, which my physician diagnosed as Bell's Palsy, so I spent two weeks on steroids before we figured out the real issue. Three weeks of doxycycline cured the Lyme but left feeling pretty wrecked for more than a month afterwards! I seem to have avoided the chronic symptoms some people experience, but a low-dose antibiotic would have been great.

[dec0dedab0de]

Just to be pedantic, Bell's Palsy is the name of the condition not the cause. So it was Bell's Palsy caused by Lyme disease.

I have noticed that the line between condition and cause is often overlooked, even by doctors. For example this leads to people thinking Pinkeye/conjunctivitis is highly contagious, when it is still conjunctivitis if it is caused by getting something in your eye. I think that holds for everything that ends in -itis too Sinusitis, Arthritis, Tendonitis, etc.

I know that is a bit of a tangent, but you reminded me of someone who had bell's palsy telling me that it was actually shingles. I explained that just because it was caused by shingles doesn't mean it stops being Bell's Palsy, just like how it is still a cough if it's from the flu or from smoking. They ended up getting really angry at me about it, but I think hn might appreciate the semantics a bit more.

[netaustin]

Not a tangent! I certainly appreciate the semantics, and there seems to be some academic interest in the semantics alone! Some Lyme researchers would like to call it “Lyme Disease Facial Palsy” or LDFP to encourage practitioners to differentiate early. Not sure that would’ve helped me, I had no bullseye rash and no fever, just horrible fatigue and facial paralysis. The idea would be to encourage practitioners in Lyme-prone locations to see Bell’s, test for Lyme, which I think your point about overlooking the link between condition and the cause supports. Lyme showed up on a blood test my PCP ordered only after I completed a course of prednisone with no improvement and much misery. He didn’t even tell me he added a Lyme test, but I’m glad he did!

Here’s one paper on the topic I remember reading at the time: https://pmc.ncbi.nlm.nih.gov/articles/PMC8791801/

[brady8]

Much of being a physician is pattern recognition - the vast majority of Bell's Palsy is idiopathic (generally viral), and thus that's how we usually treat it. If we tested everybody for everything everytime the health system(s) would collapse.

It definitely helps as a patient to advocate, and add anything that a physician like myself maybe wouldn't always ask, like if you've been a tick-infested area and/or discovered a tick attached to yourself recently.

[dec0dedab0de]

I don't know why you're being down voted, of course you can't test for everything, and you're going to start with the most likely causes.

The frustrating part for me is when people think of the symptom as the cause. Like they understand that multiple things can cause a fever, but they don't understand that multiple things can cause bronchitis.

When I was a kid I had "sinusitis" multiple times a year, but my doctor never explained to me that it could be the same or different causes. When I learned that '-itis' just meant inflammation, it blew my mind. I have done my best to spread that knowledge ever since.

[cco]

> If we tested everybody for everything everytime the health system(s) would collapse.

Looks like Labcorp made over 3 billion dollars last year, so I think probably that number would go up instead of collapsing?

[refurb]

Labcorp is one of several labs and most hospitals have their own labs and only send out specialized tests.

It is true - you can’t test every patient for everything. There is an estimated 1B primary care visits in the US each year. Assume every patient get 5 tests at $50 a test and you just spent a quarter of a trillion just on tests.

[fsagx]

The test itself for lyme must be inexpensive - The vet did a test for my dog as part of routine yearly office visit. I don't know if it's just in my area, or if it's common now.

[netaustin]

Yeah I agree that’s what happened to me. Alas, no tick, no rash, and I’m not sure my PCP in New York City sees a ton of Lyme. Still, I’m glad he caught it when he did!

[engineer_22]

Do you have trouble reading other people's emotions?

[dec0dedab0de]

No, I could clearly tell they were angry. I just never understood why some people get angry about minor corrections.

[engineer_22]

Maybe it's worth investigating

[perching_aix]

Do you?

[engineer_22]

No, you?

[y-c-o-m-b]

Doxycycline is my favorite antibiotic and the most effective against chronic sinusitis and chronic prostatitis for me. I only take it maybe once a year, but it does wonders for a good long time.

It also cured my nearly lifelong IBS-D about a decade ago. I had a small re-occurrence of IBS-D last year after so many years without it. I was able to convince the doc that it fixed it for me in the past, so he prescribed me doxycycline again. Boom! All fixed just like before.

I have no idea why that particular antibiotic does the trick, but I've taken so many others from amoxicillin line, bactrim, even cipro, flagyl (gross) etc. and only doxy is the silver bullet for me it seems.

[junto]

Doxy turned my IBD into UC. Horrible disease that vastly increases your chances of bowel cancer. Wiping out your gut bacteria richness should not be done lightly.

[raducu]

Stupid question, not a doctor, just for my anecdotal knowledge: did you also take something like a yeast (enterol which would not be affected by doxy) or probiotics?

[Klonoar]

That’s wild that it had that effect for you with any form of IBS. I know two people with Crohns where it set off and irritated their systemd for months.

[speed_spread]

> irritated their systemd

Ouch

[Klonoar]

Ha! I blame autocorrect, but I'm keeping it.

[fuzzfactor]

That's gotta hurt.

Then again if it irritates you, maybe it deserves a little disruption itself.

[voidmain0001]

I'm on a second round of Doxy. The first was 21 days and now I have a 60 day prescription. It doesn't knock me out. I take the first dose early in the morning with a lot of water. I don't eat until noon, but not before first taking a capsule of probiotics to replenish gut bacteria. I take the second Doxy in the evening with a meal. Then 3 hours later I take another probiotic capsule to restore gut bacteria overnight. Maybe that regime is helping or maybe I'm just fortunate.

[ToDougie]

Which probiotic?

[voidmain0001]

Option+ 30B CFU. It was on sale at a pharmacy that was in a convenient area. I bought based on it being discounted and having average CFU.

[raducu]

Not a doctor, but for me it helps if I take Saccharomyces boulardii (enterol) whenever I take antibiotics beause it is a yeast and is not affected by antibiotics. I also take probiotics, not sure if it's the right call to combine yeast and bacteria, but I do.

[hentrep]

Disclaimer: Not a doctor.

I think you’re alluding to this in your last statement, but standard treatment for Lyme can absolutely wreck your natural gut microbiome. This could explain some of the lingering chronic effects post-treatment. Did you try supplementing with fermented foods or probiotics after completing dox?

[netaustin]

Oh yeah, it just took time. Pill-based probiotics didn’t seem to work, but food (or time) did after a couple months.

[mikepurvis]

My kid contracted it from a tick bite while camping in Ontario; it showed as joint pain in the legs that would come and go for like a week at a time. Made it tough to explain to the doctors as by the time we'd get there, he'd be fine again.

In the end it was four weeks of doxycycline— that was several months ago and it doesn't seem to have recurred, thankfully.

[serial_dev]

A couple of years ago I had about 10 tick bites and one of them resulted in the signature bull’s-eye rash. Thankfully, I was aware of the ticks and I was checking for the bull’s-eye rash to appear and it got treated with doxycycline.

Many people face symptoms months after the bite or they might not remember getting bitten by a tick so it’s common that it is misdiagnosed and they get all kinds of ineffective and / or unnecessary meds, so I added it to my “list of illnesses to check” in case I ever get unexplainable neurological issues, fatigue and joint problems.

[tasuki]

> was checking for the bull’s-eye rash to appear

Note that the absence of that wouldn't mean you didn't get lyme disease.

Where I live, most of the ticks carry lyme disease, yet not that many people get infected: if you pull it out quickly, you greatly reduce the chance of getting infected. Of the people I know, perhaps 20% had lyme disease (and knew about it, I must add).

[hattmall]

1 in 5 people had Lyme disease where you live? Where is that??

[tasuki]

Central Europe. Maybe 1 in 10. I know at least 10 people who did, anyway. And I have not talked about this with all the people I know.

Some have no lingering issues, others have lingering issues seemingly for life, and yet others have issues for a couple of years and then they're ok.

[e40]

I had a co-worker that had a Bell's Palsy diagnosis and it turned out to be Lyme disease. Don't know which antibiotic they took, but he did get clear of it in a few months.