ER visit annoyed

MedicalNerd said...
...has anyone else gone through ... know it all nurses or docs at hospitals or is it just me?!

It's definitely not just you. However, I'm sorry you had to deal with it.

Because I'm a slow learner, it took me several years of disappointment and frustration to stop mentioning anything tick-/Lyme-related to doctors and nurses who were not Lyme literate.

When I did mention "Lyme," I should have said "Lyme and/or coinfections." A minor distinction, perhaps. But, when doctors and nurses hear "Lyme," I believe they're thinking about ONLY one bacteria -- borrelia burgdorferi.

Also, I had to realize that the doctors and nurses only know what they're taught. Which, at best, is incomplete. Even if they did have some knowledge outside of IDSA guidelines, they couldn't act upon that knowledge, as it's not the "standard of care."

Thus, I just learned to stop talking about it, unless I felt there were a good reason to do so. Even then, I tried to stick to high-level facts and not try to inject my opinion about the matter. Self-diagnosis is an irritation for some doctors. And, I can understand why. I don't agree with it, but I understand it.

If there's something tick-/Lyme-related that I want to share with a doctor or nurse, I try my best to provide a credible source of my information. For example, I might bring a printout of a study on PubMed, a cut-and-paste from the ILADS website, a quote from the website or book of a doctor like Dr. Horowitz, Dr. Jemsek, or some other actual medical doctor with clinical experience. A chiropractor, naturopath, health coach, and this forum are sources I would never mention.

In the doctor's eyes, I have zero credibility. Therefore, I try to leverage the education and experience of actual doctors or cite scientific information. Doing so makes them less able to argue or tune out. I don't need them to believe whatever I'm sharing, necessarily, I just need them to consider it as a possibility. It's sort of like a legal trial where my intent is to cause reasonable doubt.

Finally, since you mentioned Lyme to the nurse, the doctor may try to briefly discuss it. If you don't want to get into a debate about it, then just listen to what the doctor has to say and respond with "Okay, I understand. Thanks." You're not agreeing, but you're acknowledging their opinion. That gives them nowhere to go. Then, you can discuss the reason for your ER visit. Good luck, I hope you feel better soon.

I also had to try to learn not to bring lyme Into the convo, even though you really want to I've realized it's a waste of time. I only help people who want the help basically. So I had a missed call for my results, and I called them bk. They said they found a mass on my bladder and uterus area. Yikes. Who knows what it can be. My mom had a history of fibroids bt I never had anything like this. All I know is it hurts like hell,prickly sharp pain with an urge to uri aye and back pain with bladder pain. Pain is more in the urethra. Thought it was kidney stones and found out it's a mass! Well at least I know something is there. Will keep updating updated when I know more. Thanks

i have recently spent a day in ER

the doctors there are really only concerned with making sure they follow a set of pre-determined steps to do what they can to try and ensure you are going to die within 24hrs if they discharge you

so they are really not very interested in complex chronic illnesses of any type - and as mentioned above - mentioning the word Lyme is just something that they cannot usefully deal with

in my whole 12 hrs in the ER i spent the sum total of around 4 minutes with an actual doctor - the rest of the time is waiting, having blood drawn, tests run etc.
there is no way they can do anything useful for Lyme in 4 minutes
compare that the the typical 2hrs for a first appointment with a good LLMD and you can see the contrast

of course they will ask how is you general health - and i have the same dilemma as other here -

in my case i was having acute chest pains - and since many arthropod born infections can cause various direct and life threatening conditions with the heart that cause chest pain - like myocarditis, pericarditis, valve growths etc - so the fact that is have such infections is important and relevant info to give them -

the way i chose to deal with that is to say -

"i have been sick for several years since getting bitten by insects on a picnic on farmland"
which is true -
but i did not go on to explain that i have been tested privately as positive for lyme disease
or that i have since self diagnosed with bartonella based on microscopy of my blood
both of which would be red flags for them to dismiss me as some kind of crank

but they are trained that insects / arthropods can transmit various diseases - and that these diseases can cause problems with the heart.
i guess a certain percentage of people who end up in ER have also have things that have been missed by the genera practitioner - so they took that seriously - and did appropriate checks to try to rule out things like myocarditis.

since one of the main reasons people with Lyme end up in the ER is due to chest pain or heart symptoms i thought i would mention how i got on here

It wasn't even the doctor is was just a nurse! She was so snobby, the next nurse that came In snatched my curtain closed and was also snobby because I kindly declined the pain meds they offered me lol. Gosh. Also I've figured out that if I mention mold, they'll say it can't get me sick or that's not even a thing smh. So I've learned to stop mentioning mold at all also.