Posted 2/21/2019 9:54 AM (GMT -6)
Hi, Lyme folks,
I'm looking for advice, commiseration, and encouragement.
How do you decide when to push through serious herx symptoms (cardiac abnormalities, brain swelling, gastroparesis, etc.) and when to back off treatment? How do you push through safely without ongoing in-person monitoring by a knowledgeable caregiver?
How do you handle the paradox of not being well enough to handle treatment? (I'm looking for something more than a suggestion to detox here.)
When the exertion of a medical appointment (even in a wheelchair) exhausts you and causes symptom flares for a week or more, how do you get better when you can't access care by physically going to appointments? And when your immune system is so fragile that exposure to the typical germs of a public place is a huge risk?
I know healing from Lyme (when it occurs) happens differently for everyone. I have addressed MCAS, mold, metals, chronic viruses, leaky gut, parasites, detox, nutrition, EMF, reconditioning, homeopathy, herbs, hormone systems, ANS and mind-body work, reconditioning and movement, lectins, acupuncture, energy work, flower essences, infrared light treatments, kinesiology, Neurological Integration System, bioresonance devices, meditation, and mental health. I am open to everything, no matter how fringe. What am I missing?
I continue to deteriorate despite my best efforts. I don't know how to gain a foothold. My providers are at a loss, and at this point they seem frustrated by me. (I have seen 45 medical practitioners about this stuff, more than a dozen of whom are Lyme-literate.) Where do you start when every body system is involved, and a good day is one in which you can walk to the bathroom without assistance and keep food down? What's the right treatment then?
Thanks for any thoughts you can offer. I know I'm not the only one who has been in this situation ... but it's easy to feel so isolated! I just had to cancel an appointment I'd waited for months to get - one that could help me with a really disabling aspect of my illness - because I spent yesterday at the ER for a different issue and wore myself out too much to function today. This has become a trigger for me: How do you heal from a sickness when you can't manage the treatment?
Sara (Lyme, ME, dysautonomias, HPA axis dysfunction....)