Welcome, Ardhi!
Please don't apologize for being dramatic. This stuff is dramatic, and traumatic. You are welcome to vent here, and have any of the normal human range of emotions that we get when faced with confusing, challenging, freaky garbage coming from inside our own bodies, sometimes with no competent help in sight! This past week, I also had some scary symptoms and did not go the the ER for them, since past ER jaunts have been useless at best, and sometimes counterproductive. I just waited, hoping the issues would pass, and hoping it wouldn't kill me. I think many of us on this forum have those thoughts from time to time!
Your post title mentions carditis - has your heart swelled? If not, then the high BP sounds like dysautonomia to me (autonomic nervous system dysfunction). The form of dysautonomia you hear about
most is POTS, but the ANS controls blood pressure and can cause issues with just that. No cardiologist will figure that out, probably, because it's neurological. Your heart will test fine with ANS issues. Lyme and co-infections do love the nervous system! Regular neurologists won't know much about
dysautonomia, so if that's what's going on, then you'd need a specialist, who unfortunately are few and far between! Some people find help with dysautonomia by impacting the nervous system directly, like through tapping (EFT), meditation, limbic system retraining programs (DNRS), TENS, biofeedback/neurofeedback, neural trigger point injections, acupuncture, yoga, qi gong, and methods of stimulating the vagus nerve https://selfhacked.com/blog/32-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about
-it/ Maybe one of those things can help you. Carditis is acutely dangerous, but ANS dysfunction almost always is not.
For me, it's very typical to have flares of ANS symptoms following a herx. My guess would be that the BP issues you are experiencing are part of the herx.
That first incident you described sounds so frightening! Many people here are no strangers to scary health surprises, so you definitely can find support here of all kinds - from the most technical to purely emotional. I'm glad that you were safe (in an immediate sense) and are on the waiting lists for some specialists. If you have not noticed this already, keep in mind that most conventional specialists who are not Lyme-literate will not find much wrong with you, because their tests and evaluations are geared toward finding illnesses with which they are familiar. A Lyme-literate doctor (or other healthcare practitioner with Lyme expertise) should be able to help interpret test results from the specialists and guide them in terms of what to ask for and check, so those specialist visits you wait so many months for (ugh) can be more useful for you!
You mention anxiety and hormone imbalances, as examples of diagnoses you received from dismissive doctors, and I want to throw out there that anxiety and hormone imbalances are symptoms of something else, for everyone who has them, so no doctor should stop there. Many (I'd say the vast majority of) people with Lyme and co-infections have anxiety and hormone imbalances in our obnoxious soup of symptoms. Some people treat those symptoms directly, and others just treat the underlying infections and hope the symptoms resolve as the infections do, and probably most people do a combination. Some Lyme doctors insist on treating certain symptoms like pain, for example, even if patients say they do not mind it much, in order to give the body a break from managing that sensory input and to avoid creating neural pathways that perpetuate pain, allowing the body to fight the infections better. So there's a school of thought that says to treat any treatable dysfunction, which can help your body heal from the infections. I say this just because initially I was so scared of being dismissed that I did not address any symptoms, sort of throwing the baby out with the bathwater. (I was told it was "just" migraines, "just" anxiety, "just" PMS, "just" PTSD, etc. and I knew that if I said I had migraines and anxiety, then doctors would stop helping me look for real answers.) I'm not saying this is what you are doing, just sharing my experience.
I had no idea pharmacists could withhold prescribed meds. That is infuriating! Are you taking any herbs, nutrients, or other supplements, either supportive or antimicrobial? Rawlsmd.com or Stephen Buhner's website might be good places to get some ideas about
treating yourself, if you want to get started or just familiarize yourself with some of the diverse approaches people take. Also here: https://www.treatlyme.net/lyme-disease-treatment-guidelines A doctor who "seems to know something about
Lyme" doesn't sound very promising, as this is such an intense and complex illness that's different for everyone - really best to have a specialist unless you feel very confident in your ability to navigate it yourself. So many conditions tend to arise with Lyme - unusual co-infections, gut issues, psych and cognitive issues, mast cell activation syndrome, mold toxicity, dysautonomia, peripheral neuropathy, HPA axis dysfunction, autoimmune disorders, etc. - and most of them are fairly specialized to treat. Are there any functional medicine doctors in your area? Possibly traditional or classical Chinese medicine practitioners or naturopaths? Acupuncturists and herbalists can help as well, and also resonant frequency devices like Rife and AmpCoil, and other therapies like ozone.... It can be so terribly frustrating to find a solid medical team.
Good luck with everything, and let us know how it goes!