When to go to the ER and what do they do to help.

This question would help just about anyone but I specifically asked for myself and for those of us who live alone and don't have another individual aiding in support.
For someone living alone if I hit something too hard I can't grocery shop I can't cook for myself I can't bathe myself so I have to be very very very careful.
My recent flare this spring was the worst that I had had since the acute phase of my infection years ago and it really made me panic because I didn't realize I could fall that far that fast. Which brings me to my question. It seems like an obvious answer but it's really not when you're in a severe herx or an adrenal crisis because I can't cognitively make executive decisions. So I'm trying to write something down on the refrigerator to let me know when I should call the ambulance.
But I also wanted to ask from other people's experiences do the ER visits offer any physiological benefit.

Yep I agree with dcd2103 here, they will give you a benzo and tell you chronic Lyme doesn't exist.

Then they charge you a couple grand on your way out. And don't even think of staying overnight if insurance doesn't cover it.

I wish I was making this up but this has happened to me several times now.

Brandiwine,

You posted an excellent question and worded it very well.

I only went to the ER once when symptoms first started. I thought I was having an allergic reaction to shellfish. I ended up going to the ER 3 times in one night because I kept having tingling sensations in my head, face, and mouth that came and went in spite of Benadryl, Pepcid, and an Epipen. That was the beginning of sorrows for me.

It was 6.5 years before I found out it was Lyme.
——————————
Skinny Joe indirectly highlighted the dilemma that we face. Many of our symptoms feel life threatening or dangerous or like possible indications of some “normal” emergency. If they are caused only by Lyme mimicking something else, then standard exams and testing often reveal nothing, costing $$ and providing no help.

Then there are the real emergencies, like skinny joe’s appendix. We can’t always tell what’s wrong. If it feels like an emergency, then it’s best to be safe than sorry.
——————-
Are you being treated by a doctor? If so, I would pose the question to them as well and ask their advice.

Post Edited (WalkingbyFaith) : 7/16/2020 9:46:05 AM (GMT-6)

In my many ER and hospitalization experiences from before I was diagnosed with Lyme, they either tell you all your symptoms are "anxiety" (you know, because you're a woman!), OR they would try to force steroids on me. Seemed like they always desperately wanted to give me IV steroids, which I turned down many times. I would have to argue with them to get diagnostic tests done.

At this point I would rather die at home in the comfort of my own bed than ever go to a hospital ever again, but that's because I've had so many bad experiences with clueless doctors...neurologists in particular.

You mentioned adrenal crisis, too. That’s one I want to know about. What do they do for that?

I have often felt like if I had a trauma - car accident or crime or anything that would bring an adrenaline rush that it might kill me. I have strong reactions at times to even minor startles.

I mostly agree with WBF and orbitingaround. Often I would rather die in my bed than put myself through the ordeal of a hospital. The ER's job is to make sure you're not going to die that day and to suppress symptoms until you can see a regular doctor. They're not going to be useful for anything else.

Times I went to the ER since Lyme:
1. First got sick with Lyme and had dozens of debilitating symptoms. They admitted me because I couldn't eat, but all they found was a hemorrhagic ovarian cyst. (And discovered a Pepsid allergy.) Offered me CTs but I declined because I'm not into contrast, and asked for an ultrasound. Not worth it in retrospect, but it was good to know about the ovarian cyst.
2. Pain in urethra and kidneys, thought I had a sudden but advanced UTI. Nope. Bought at-home test strips: https://smile.amazon.com/Parameter-Urinalysis-Test-Strips-150ct/dp/B00XIKQCJC/ref=pd_bap_rp_46?_encoding=UTF8&pd_rd_i=B00XIKQCJC&pd_rd_r=056fd2fc-de82-4c55-bc4f-b8d51b414c38&pd_rd_w=vN1Oo&pd_rd_wg=zkVim&pf_rd_p=dc5d20a9-bdae-4e7d-8edc-f16a5a74b8eb&pf_rd_r=K9S5S9SJ3SGBNRNBQPWQ&psc=1&refRid=SZ429TJXMEPFTANJ3QHT
3. Hemorrhagic ovarian cyst again. This one hurt way worse than the first one, so I wanted to rule out ovarian torsion. Again offered CT and asked for ultrasound.
4. Kidney pain, wanted to rule out stones. Ultrasound.
5. Leg pain, wanted to rule out DVT. Ultrasound.
6. Leg pain, wanted to rule out DVT. Ultrasound.
7. Crazy high heart rate. Literally read to me from Wikipedia about my conditions. Echo. Head of cardiology told me I was "immortal" because I was 35 with a structurally sound heart, so I should go live my life.
8. Massive headache and vertigo (Bartonella herx from DesBio kit) so wanted a head CT to rule out encephalitis.

This isn't including all the awful ER visits I had pre-Lyme.

They like to offer me antacids, steroids, pain meds, and fluids. I always try hard to stay very measured the whole time, so they don't offer me psych meds, but they also might not believe me that what's going on is serious. You can't win. And I just stick with saying I have CFS and see an integrative medicine specialist MD for treatment (both technically true). Bringing up Lyme or alternative treatment modalities shuts down any progress I make in getting someone to take me seriously.

I joke that I need to purchase an ultrasound machine because that's all the ER has been good for, for me - ruling things out via ultrasound.

But! The ER is great if you are worried about an injury or most heart problems. They're very helpful for car accidents and gunshot wounds and broken bones. They would help with DVT or breathing problems. A bursting appendix.

For an adrenal crash or herx, they are useless. Adrenal crashes and herxes could kill us, if sufficiently extreme, but ERs do not recognize those issues or know how to treat them. So on your fridge, I would write:

Heart
Breath
Injury
Clot
Blinding abdominal pain
Fever over 104

And if those things aren't the issue, then wait to see someone who has a real idea about these things, and hunker down in the meantime.